I know it has been a while since I last posted, but life has been one thing after the other lately.
Craig's seizures have gotten worse, and he spent 5 days in the hospital, 2 of which were in a coma.Then fine then unable to swallow, then catatonic.
Finally got him released, and he has deteriorated to the point of looking into hospice, and telling the staff no to a feeding tube.
He cannot chew, and is on a puree diet, cannot drink thru a straw,does not move or speak.
They have adjusted his meds so many times in the past month, I can hardly keep up.
His visit to the neuro started the whirlwind when he removed all but his xyprexa and depakote.
The AD meds were restarted after his hospital trip, and his depakote was changed to time release, because his levels come up too low all the time.
It is so painful to see him in this condition, I can hardly stand to see him at all. I know he would be devastated by living in this shape, so the boys and I have agreed to no feeding tubes, no extra treatments.
Monday, November 2, 2009
Friday, October 9, 2009
one step forward 2 steps back
It has been a week since my last post, because I have been having one of those Murphy's law weeks.
I gave permission to give a Pnemonia vaccination to Craig last weel, and it seems to have undone all the progress he has made and then some. The first day after the shot, he could barely speak and shuffled, not recognizing me.
The next visit was worse, with him walking into walls, and trying to avoid me at all costs.
I spoke to the ombudsperson and told her ot to schedule a follow up.The first meeting yielded mixed results, and I haveno time for a second ineffectual meeting.
Then I called the prospective nursing home, only to be told that the admissions person was no longer there.
The woman I eventually spoke to was the person that initially evaluated Craig, and said she would check the status of the waiting list and get back to me. It is now 4 days later, and nothing.
I also tried to call in intermittent hours on my FMLA, only to be told it expired in September, but no one told me. Nor did they ask if I wanted to renew it.Now I will have to go thru the hassle again of trying to get a doctor to fill it out.
I placed a call to the SW at the nursing home, and left a message (in a meeting as usual) asking if she would contact Craig's docotor about filling the forms out ( he is associated with the nursing home).Twio days later and no call back. When I arrive at the nursing home, she is gone both afternoons long before office hours are done.
Also got a call from the attorney's office today, from an assistant, who didn't even know what I was going to the office for, but wanted to know if I wanted to schedule a follow up appt. Set it up for the same day as the Neuro appt for Craig. Might as well blow the whole day!
On top of that, Craig's disability check did not come on schedule, and I panicked. I received a call from the nursing home stating they had the check.Only on my arrival to pick up the check did I find out that they had applied and been designated his rep payee, without anyone notifying me. I told them I had applied to have the check direct deposited the day before, so we would have to wait and see what SS did with his future checks.
Anyone who thinks that placing their LO will ease the caretaking burden, needs to rethink.The challenges are different, but they are not easier.
I gave permission to give a Pnemonia vaccination to Craig last weel, and it seems to have undone all the progress he has made and then some. The first day after the shot, he could barely speak and shuffled, not recognizing me.
The next visit was worse, with him walking into walls, and trying to avoid me at all costs.
I spoke to the ombudsperson and told her ot to schedule a follow up.The first meeting yielded mixed results, and I haveno time for a second ineffectual meeting.
Then I called the prospective nursing home, only to be told that the admissions person was no longer there.
The woman I eventually spoke to was the person that initially evaluated Craig, and said she would check the status of the waiting list and get back to me. It is now 4 days later, and nothing.
I also tried to call in intermittent hours on my FMLA, only to be told it expired in September, but no one told me. Nor did they ask if I wanted to renew it.Now I will have to go thru the hassle again of trying to get a doctor to fill it out.
I placed a call to the SW at the nursing home, and left a message (in a meeting as usual) asking if she would contact Craig's docotor about filling the forms out ( he is associated with the nursing home).Twio days later and no call back. When I arrive at the nursing home, she is gone both afternoons long before office hours are done.
Also got a call from the attorney's office today, from an assistant, who didn't even know what I was going to the office for, but wanted to know if I wanted to schedule a follow up appt. Set it up for the same day as the Neuro appt for Craig. Might as well blow the whole day!
On top of that, Craig's disability check did not come on schedule, and I panicked. I received a call from the nursing home stating they had the check.Only on my arrival to pick up the check did I find out that they had applied and been designated his rep payee, without anyone notifying me. I told them I had applied to have the check direct deposited the day before, so we would have to wait and see what SS did with his future checks.
Anyone who thinks that placing their LO will ease the caretaking burden, needs to rethink.The challenges are different, but they are not easier.
Wednesday, September 30, 2009
Busy week
It has been a very busy week.Craig's cuddlewrap is missing, his new glasses are missing after only 2 weeks.
I started an irrevocable burial fund for Craig, which was depressing.
The longer Craig is on the patch, the more he improves.He recognizes me with no prompting, remebers his mother is alive, but his father is dead, and is once again angry with "brother". Not sure who's but it doesn't matter...he didn't like his or mine. He is conversive to a point, and is showing interest in magazines and the tv
again.
More paperwork battles with the Medicaid people and still no word from the Nursing home I placed Craig on the waiting list for.
I am also concerned because of the exposure to Swine flu. Not that I am worried, but I don't want to expose the people in the nursing home if I can help it.After a brief fiasco at work this week, I am not sure if I have been exposed to the regular flu, or the swine flu. The nursing home asked permission to give Craig a pneumonia vaccone today, and I gae permission for the flu vaccine earlier.
Here's hoping the improvement will continue for Craig.
I started an irrevocable burial fund for Craig, which was depressing.
The longer Craig is on the patch, the more he improves.He recognizes me with no prompting, remebers his mother is alive, but his father is dead, and is once again angry with "brother". Not sure who's but it doesn't matter...he didn't like his or mine. He is conversive to a point, and is showing interest in magazines and the tv
again.
More paperwork battles with the Medicaid people and still no word from the Nursing home I placed Craig on the waiting list for.
I am also concerned because of the exposure to Swine flu. Not that I am worried, but I don't want to expose the people in the nursing home if I can help it.After a brief fiasco at work this week, I am not sure if I have been exposed to the regular flu, or the swine flu. The nursing home asked permission to give Craig a pneumonia vaccone today, and I gae permission for the flu vaccine earlier.
Here's hoping the improvement will continue for Craig.
Wednesday, September 23, 2009
We enter a new set of complications
Well, I finnaly got the doctor to switch Craig from Aricept to the Exelon patch. After a week of waiting, I am able to see a distinct difference in Craig. Although his speaking doesn't really make much sense, he is suddenly very verbal. He called me by name again for the first time in weeks, and his walking has improved a lot.
It will be interesting to see if he continues to improve.
We paid a visit to the Elderlaw atty this week, despite the flu bug taking it's toll for the past several days. He has given me advise on Craig's SSDI and Medicaid, written sevral letters on my behalf, asked the Legal Aid for help in obtaining Guardianship, and is preparing MY will, DPOA and POA, along with my living will.
If this experience has taught me anything, it's that I never want to leave my family witht the burdens I have been forced to take on.
I also received a phone call from Craig's brother, after texting him to see if he was still alive. I have tried to explain the highlights of his experiences since being placed, but untill you actually see with your own eyes, I guess it's hard to accept the rapid deterioration that has occurred in the past 6 months.
I subscribed to National Geographic for Craig, and he actually turned the pages and looked at it when I gave him his first copy.How much he actually understands is a matter of conjecture at this point, but he seems to like the pictures.
This visit, he was fascinated with the cuffs on my shirt sleeves, asking what they were.When I had to leave, I bent to kiss him goodbye, and he looked up at me and said"hello", as if I had just arrived.Guess that short term memory is getting pretty short.
It will be interesting to see if he continues to improve.
We paid a visit to the Elderlaw atty this week, despite the flu bug taking it's toll for the past several days. He has given me advise on Craig's SSDI and Medicaid, written sevral letters on my behalf, asked the Legal Aid for help in obtaining Guardianship, and is preparing MY will, DPOA and POA, along with my living will.
If this experience has taught me anything, it's that I never want to leave my family witht the burdens I have been forced to take on.
I also received a phone call from Craig's brother, after texting him to see if he was still alive. I have tried to explain the highlights of his experiences since being placed, but untill you actually see with your own eyes, I guess it's hard to accept the rapid deterioration that has occurred in the past 6 months.
I subscribed to National Geographic for Craig, and he actually turned the pages and looked at it when I gave him his first copy.How much he actually understands is a matter of conjecture at this point, but he seems to like the pictures.
This visit, he was fascinated with the cuffs on my shirt sleeves, asking what they were.When I had to leave, I bent to kiss him goodbye, and he looked up at me and said"hello", as if I had just arrived.Guess that short term memory is getting pretty short.
Sunday, September 13, 2009
That didn't take long....
I have been trying to vary my visiting schedule, so I can see if appearances change when I am not expected. Guess they do, or they just don't get it.
Craig's clothes are still in bags in the bottom of the closet, he has not been showered, and his snugsack is missing. In the time I was at the nursing home ( about 90 mins), I was unable to
find one RN (although the med cart unattended in the hall was there). I did see an lpn who kept steering Craig back into the room ( I think so I wouldn't come out). The aides apparently decided to all take their breaks at the same time, and the whole wing looked to be unattended.
Now I understand it is a weekend, so there are staffing difficulties, but this is a 24/7 facility. That means the care should be equal no matter what day it is. I also think the staff should be aware that even if the residents are unaware of the things they are saying, the visitors aren't. And I heard some very unpleasant things being said about the residents and their care, and to the residents also. I was under the impression that we placed our loved ones when we, the amateurs, could no longer handle the care needed. That is why we have placed them in the care of these "professionals". The people who are trained to handle this with patience and caring.
I guess I was wrong based on what I have heard. I hope this is specific to this facility, or that I just happened to hit in a bad year.....
Craig is truly zoned today, no recognition, no sensible conversation, shuffling gate.I brought coffee in a travel mug and mini bagels, which he ate laying down. When he insisted on drinking in a reclining position also, I held my breath, but apparently he is gettin good at it.
After multiple tries, he's off and running again. I also noted he is still exhibiting muscle spasm signs, but since I could not find a nurse, I couldn't ask about the requested meds changes either.
I also made an appt with the Elder law atty for the end of the month. I will inquire about guardianship, and what to do with the lump sum and Medicaid at that time.
I will be calling the new nursing home for an update on the status of the waiting list this week too. Apparently, this is the only way to get him better treatment.
I am sssooooo tired. Mentally, physically and emotionally. They say what doesn't kill you makes you stronger. Well I certainly don't feel stronger, so what does that mean?
Craig's clothes are still in bags in the bottom of the closet, he has not been showered, and his snugsack is missing. In the time I was at the nursing home ( about 90 mins), I was unable to
find one RN (although the med cart unattended in the hall was there). I did see an lpn who kept steering Craig back into the room ( I think so I wouldn't come out). The aides apparently decided to all take their breaks at the same time, and the whole wing looked to be unattended.
Now I understand it is a weekend, so there are staffing difficulties, but this is a 24/7 facility. That means the care should be equal no matter what day it is. I also think the staff should be aware that even if the residents are unaware of the things they are saying, the visitors aren't. And I heard some very unpleasant things being said about the residents and their care, and to the residents also. I was under the impression that we placed our loved ones when we, the amateurs, could no longer handle the care needed. That is why we have placed them in the care of these "professionals". The people who are trained to handle this with patience and caring.
I guess I was wrong based on what I have heard. I hope this is specific to this facility, or that I just happened to hit in a bad year.....
Craig is truly zoned today, no recognition, no sensible conversation, shuffling gate.I brought coffee in a travel mug and mini bagels, which he ate laying down. When he insisted on drinking in a reclining position also, I held my breath, but apparently he is gettin good at it.
After multiple tries, he's off and running again. I also noted he is still exhibiting muscle spasm signs, but since I could not find a nurse, I couldn't ask about the requested meds changes either.
I also made an appt with the Elder law atty for the end of the month. I will inquire about guardianship, and what to do with the lump sum and Medicaid at that time.
I will be calling the new nursing home for an update on the status of the waiting list this week too. Apparently, this is the only way to get him better treatment.
I am sssooooo tired. Mentally, physically and emotionally. They say what doesn't kill you makes you stronger. Well I certainly don't feel stronger, so what does that mean?
Wednesday, September 9, 2009
More to worry about
Satuday's visit went fine, but I mentioned taking hubby outside and I got the response"you may not be able to get him back in", leading me to believe that they had no intention of helping.
Scrap that.Craig's things were not all moved, so back to the old room to collect them.
The CNA seems to be trying to impress me by smothering me. Not working.
Craig is cleaned and dressed, and seems to like this location better.
Leave to celebrate youngest son's birthday.
Return to the NH Tuesday after work, admin is lying in wait at the door.I think she is stalking me.
Asks lots of questions, give lots of answers.Tell her about taking hubby outside being poo-poo'd on Saturday.
Find Craig in fine shape, walking the halls again.Follow him up and down the halls for 1/2 an hour and give up. He does not want to talk to me today.
I stop and introduce myself to the nurse. She is a hoot.Ask about the aricept to exelon conversion, nothing in her chart. Ask her to please note, since doctor comes on Wednesday.
Craig has been switcged from SSI to SSDI, so call Medicaid, told have to pay directly, and they will pay the balance.
Also got back money, so emailed elder atty, no response email for an appt, still no response.
Guess I will have to call to get a response.
Mail copy to Medicaid, they will tell me what the spend down amount will be. Hopefully, the atty can help preserve some of what I should be able to recoop for all the time I paid for everything.
Not much of a settlement, but something's better than nothing.
They also placed his disability at March 2008, so he will be eligible for Medicare next year.
Then more fun renegotiating all the payments again.
Still waiting to hear from new NH on an opening. I will call to remind them later this week.
Old NH not too thrilled with hearing he is on a waiting list to move, but tough.
I feel like superman.... the neverending battle for truth, justice and the American way......
Scrap that.Craig's things were not all moved, so back to the old room to collect them.
The CNA seems to be trying to impress me by smothering me. Not working.
Craig is cleaned and dressed, and seems to like this location better.
Leave to celebrate youngest son's birthday.
Return to the NH Tuesday after work, admin is lying in wait at the door.I think she is stalking me.
Asks lots of questions, give lots of answers.Tell her about taking hubby outside being poo-poo'd on Saturday.
Find Craig in fine shape, walking the halls again.Follow him up and down the halls for 1/2 an hour and give up. He does not want to talk to me today.
I stop and introduce myself to the nurse. She is a hoot.Ask about the aricept to exelon conversion, nothing in her chart. Ask her to please note, since doctor comes on Wednesday.
Craig has been switcged from SSI to SSDI, so call Medicaid, told have to pay directly, and they will pay the balance.
Also got back money, so emailed elder atty, no response email for an appt, still no response.
Guess I will have to call to get a response.
Mail copy to Medicaid, they will tell me what the spend down amount will be. Hopefully, the atty can help preserve some of what I should be able to recoop for all the time I paid for everything.
Not much of a settlement, but something's better than nothing.
They also placed his disability at March 2008, so he will be eligible for Medicare next year.
Then more fun renegotiating all the payments again.
Still waiting to hear from new NH on an opening. I will call to remind them later this week.
Old NH not too thrilled with hearing he is on a waiting list to move, but tough.
I feel like superman.... the neverending battle for truth, justice and the American way......
Saturday, September 5, 2009
Whirlwind week
Called the ombudsperson and see if she's heard from NH, nothing.She calls to set up meeting,
Friday at 10 am.
Suddenly magic happens, glasses appear, new NH calls, doctor calls!
Speak to doctor,asked for EEG results, told will tell you, but you won't understand.
Please don't assume! Says results are typical of elderly brain, but nothing to indicate the cause of the seizures.
I tell him I think meds may be cause of seizures, he says may just be progression of AD.
Guess no changes here.
Craig has not addressed me by name since the seizure, lays in bed the whole visit. Give him candy, unwraps it throws candy away and tries to eat the foil wrapper. Then yells at me for taking foil away.
Call from NH craig fell again, told them may be due to new bifocals, never had them before.
SW calls to say potential NH came to evaluate Craig for the AD unit.Receive a call next day
(thank her for at least calling). She says he doesn't qualify because cannot perform any self
care functions.
Now I get on my high horse. Tell her that I want him out of the current facility, and explain goings on at current facility.Also explain thoughts about overmedication. She says will speak to administrator about possible admission to regular unoit for meds eval and possible transfer after
seeing if that corrects some of the problems.
She asks me to come for a tour. Leave work early, arrive at new NH. Meet admissions nurse, says SW is in meeting. Given tour of new facilty.She asks what I am looking for, I say I just want someone to care about him.
Asked and said yes to placement on waiting list.
Friday has arrived, I take my sister(who is more vocal than me) and meet ombudsperson at
NH with printed list. Ask for elder law atty referral, told they do not do referrals.
This meeting has everyone who's anyone, pass out printed lists. I am slow at first, then kind of get wound up into it. The head administrator seems shocked at the problems listed.
NOW everyone wants to help. tell them I placed Craig on list for new NH due to AD unit.
Ask to have Craig removed from Aricept placed on Exelon.Say they will converse with doctor.
Try to fib a few times, thank God I brought sister to back up .Ombudsperson takes furious notes.Offered and accepted new room for Craig by outside access with view.Set appt with ombudsperson to review in 1 month.Set appt for review with NH staff every 2 weeks.
Seems like too little too late to me. New room directly accross from nurses station. Guess they will be watching him closer now.
Will return after room move complete.
I have made it plain to all that although they may be correcting my concerns, I worry what
happens with patients who have no one to oversee their care. Everyone is happy-happy and shake their heads in agreement.
We shall see if this has made any impact in the coming days.
Friday at 10 am.
Suddenly magic happens, glasses appear, new NH calls, doctor calls!
Speak to doctor,asked for EEG results, told will tell you, but you won't understand.
Please don't assume! Says results are typical of elderly brain, but nothing to indicate the cause of the seizures.
I tell him I think meds may be cause of seizures, he says may just be progression of AD.
Guess no changes here.
Craig has not addressed me by name since the seizure, lays in bed the whole visit. Give him candy, unwraps it throws candy away and tries to eat the foil wrapper. Then yells at me for taking foil away.
Call from NH craig fell again, told them may be due to new bifocals, never had them before.
SW calls to say potential NH came to evaluate Craig for the AD unit.Receive a call next day
(thank her for at least calling). She says he doesn't qualify because cannot perform any self
care functions.
Now I get on my high horse. Tell her that I want him out of the current facility, and explain goings on at current facility.Also explain thoughts about overmedication. She says will speak to administrator about possible admission to regular unoit for meds eval and possible transfer after
seeing if that corrects some of the problems.
She asks me to come for a tour. Leave work early, arrive at new NH. Meet admissions nurse, says SW is in meeting. Given tour of new facilty.She asks what I am looking for, I say I just want someone to care about him.
Asked and said yes to placement on waiting list.
Friday has arrived, I take my sister(who is more vocal than me) and meet ombudsperson at
NH with printed list. Ask for elder law atty referral, told they do not do referrals.
This meeting has everyone who's anyone, pass out printed lists. I am slow at first, then kind of get wound up into it. The head administrator seems shocked at the problems listed.
NOW everyone wants to help. tell them I placed Craig on list for new NH due to AD unit.
Ask to have Craig removed from Aricept placed on Exelon.Say they will converse with doctor.
Try to fib a few times, thank God I brought sister to back up .Ombudsperson takes furious notes.Offered and accepted new room for Craig by outside access with view.Set appt with ombudsperson to review in 1 month.Set appt for review with NH staff every 2 weeks.
Seems like too little too late to me. New room directly accross from nurses station. Guess they will be watching him closer now.
Will return after room move complete.
I have made it plain to all that although they may be correcting my concerns, I worry what
happens with patients who have no one to oversee their care. Everyone is happy-happy and shake their heads in agreement.
We shall see if this has made any impact in the coming days.
Thursday, August 27, 2009
What do I do now?
It has been a week since I called the ombudsperson. Nothing from social worker, nothing from
podiatrist.No glasses. No EEG results.
Craig has been walking better since I cut his toenails, but seems to be less cognitive this week.
Today it hit the fan.......
Got 2 voicemails from nursing home. Another seizure. Nurse asks if he has a history of seizures.
Which part of his chart is missing? Or do you even read it?
I decide this time I am going to go thru the process myself, sp I will have some input.
Rush to nursing home.Charge nurse says doctor ordered MORE meds. I ask why more meds.
She says they add to existing seizure meds if not effective. I ask if not effective, why is he getting them? Go to room. LPN is sitting on bed with hubby trying to keep him from getting out of bed.
He is unable to speak, non interactive. Keeps trying to scoot himself up in the bed. There are tears in his eyes. I tell the nurse I think he is in pain, and she agrees.
I tell them I want him to go to the hospital, so they call the doctor, and he writes the order.
Vitals are taken, and his BP is high. Nurse tells ambulabce driver he is tachycardic too.
Follow to hospital. After 1 hr in waiting room, ask for update and am sent to his stall. He still cannot focus, speak or interact. Has no idea who I am. Nurse states they drew bloodwork, did chest xray.Are waiting to see if doctor ordered CT scan.
Sit for 1 1/2 hrs. nurse comes back to tell me they are waiting for transport for CT. Wait another hr. Step out for coffee and food. Realize past lunch and no food for hubby, so buy overpriced cookie and M&M's for hubby.
takes another 20 mins to get back to hubby.Wait another hr, nurse asks if PA has been in. NO.....
Says they are going to send him back to nursing home. What?
After feeding hubby cookie and candy watch monitor for another hour. Watch bp spike, watch
respirations drop to 7, watch pukse race up and down, spiking at 157.
PA comes in and says blood work and xray good except his Depakote (seizure med) level is low.
Guess he didn't get his meds today. Wonder how that happened.
I ask why his pulse and BP are acting weird. Told they ran cardiac on his blood and NPF.
Said she reviewed his history. Asked why EEG results were never divulged. Dodge that question.
Tell her he never had seizures until on meds.She is surprised, since chart says history of seizures. Says should have seen Neuro after first seizure. Told her I asked for referral when hubby was admitted to NH. Says get pushy.
Then says something that made me sit back...says seizures are not normal for AD.
Wonder what school she went to????????
Ambulance comes to take hubby back. I call NH ask nurse to note on cgart for Doc to call me.
Tell nurse about request for Neuro,she asks what insurance he has.Tell her Medicaid.
She tells me there are NO Neuro's in our county who accept Medicaid. She says he will be put on list. I tell her can't get to the top if no one puts you on the list!
Call ombudsperson again and leave message. Will talk to her about NH, doctor, Neuro.
Wonder if Craig will last long enough to see the neuro? Not if this bunch has anything to do with it...
How much more can I take? How much more can he take?
How awful it must be for older spouses to try to navigate this mess,,,,,
I am still fairly young (relatively speaking) and I am losing my mind!
podiatrist.No glasses. No EEG results.
Craig has been walking better since I cut his toenails, but seems to be less cognitive this week.
Today it hit the fan.......
Got 2 voicemails from nursing home. Another seizure. Nurse asks if he has a history of seizures.
Which part of his chart is missing? Or do you even read it?
I decide this time I am going to go thru the process myself, sp I will have some input.
Rush to nursing home.Charge nurse says doctor ordered MORE meds. I ask why more meds.
She says they add to existing seizure meds if not effective. I ask if not effective, why is he getting them? Go to room. LPN is sitting on bed with hubby trying to keep him from getting out of bed.
He is unable to speak, non interactive. Keeps trying to scoot himself up in the bed. There are tears in his eyes. I tell the nurse I think he is in pain, and she agrees.
I tell them I want him to go to the hospital, so they call the doctor, and he writes the order.
Vitals are taken, and his BP is high. Nurse tells ambulabce driver he is tachycardic too.
Follow to hospital. After 1 hr in waiting room, ask for update and am sent to his stall. He still cannot focus, speak or interact. Has no idea who I am. Nurse states they drew bloodwork, did chest xray.Are waiting to see if doctor ordered CT scan.
Sit for 1 1/2 hrs. nurse comes back to tell me they are waiting for transport for CT. Wait another hr. Step out for coffee and food. Realize past lunch and no food for hubby, so buy overpriced cookie and M&M's for hubby.
takes another 20 mins to get back to hubby.Wait another hr, nurse asks if PA has been in. NO.....
Says they are going to send him back to nursing home. What?
After feeding hubby cookie and candy watch monitor for another hour. Watch bp spike, watch
respirations drop to 7, watch pukse race up and down, spiking at 157.
PA comes in and says blood work and xray good except his Depakote (seizure med) level is low.
Guess he didn't get his meds today. Wonder how that happened.
I ask why his pulse and BP are acting weird. Told they ran cardiac on his blood and NPF.
Said she reviewed his history. Asked why EEG results were never divulged. Dodge that question.
Tell her he never had seizures until on meds.She is surprised, since chart says history of seizures. Says should have seen Neuro after first seizure. Told her I asked for referral when hubby was admitted to NH. Says get pushy.
Then says something that made me sit back...says seizures are not normal for AD.
Wonder what school she went to????????
Ambulance comes to take hubby back. I call NH ask nurse to note on cgart for Doc to call me.
Tell nurse about request for Neuro,she asks what insurance he has.Tell her Medicaid.
She tells me there are NO Neuro's in our county who accept Medicaid. She says he will be put on list. I tell her can't get to the top if no one puts you on the list!
Call ombudsperson again and leave message. Will talk to her about NH, doctor, Neuro.
Wonder if Craig will last long enough to see the neuro? Not if this bunch has anything to do with it...
How much more can I take? How much more can he take?
How awful it must be for older spouses to try to navigate this mess,,,,,
I am still fairly young (relatively speaking) and I am losing my mind!
Wednesday, August 19, 2009
Finally had enough
Went to see Craig yesterday, fed him pudding, yoohoo, boost and a few pieces of candy.
His new roommate is already gone. He tried to converse, not making much sense.
I notice had tons of flaking skin in his hair. Brush is gone, found the comb. After 15 minutes of combing got most of it out.Must be relaxing for him, as he yawned thru most of it.
He's wearing pajama bottoms that aren't his, even tho he has clothes hanging in his closet.
I have no idea where this stuff keeps coming from.
After a few hours, I decide it's time to leave before the rain starts, and tell Craig I have to go home and feed the cat. He asks why I have to feed the cat. I say because he'll bite me if I don't feed him. He says that would be bad.
I start to leave and he calls my name, and starts to follow me. This is unusual. Then he starts saying toesover and over with mismatched words attached.
I ask if his toes hurt, and he says yes to my surprise.
Now I have seen him with some pretty severe injuries say they didn't hurt, so this gets my attention. I sit him down, pull off his shoes.They are caked in the tread with old food.Yuck!
Then I pull off his socks, and it is immediately apparent why his toes hurt.
His toe nails are so long they are growing back into his toes. And he has one on his right foot that is black and falling off. I get a pair pf scissors from my purse and clip them, with him saying ouch a few times. Then I find his slippers and put them on, as they have more give on his toes.
I kiss him and tell him I love him, and he says it back this time.
I go to the nurses station, no one there.I see a nurse up the hall, but am told she doesn't work that end.Nice.....
I find an aide and ask to leave a message for the nurse. I explain about Craig's toes, and ask to have them looked at.
As I am leaving the nurse comes in and I repeat the story to her.She says she will look at his toes.I am told the Podiatrist hasn't been in for a while. I say it doesn't take apodiatrist to cut nails that long and leave.
I wait, but as usual, hear nothing from the nursing home.
I understand bumps and falls, but the lack of basic care is more than I can handle.
Today I called the Ombudsperson, She said I should ask the Social worker where she tried to place Craig. I tell her she doesn't return my phone calls anymore. She tells me to leave a message saying I spoke to her.
Magic does exist! How quickly the call was returned this time.
I explain about the call, she asks what happened. I tell her about the toes. I tell her they are not equipped to handle him and ask for a placement at an AD facility.She says she will get right on that, and that she will have the director of Nursing services call me too talk about the care concerns.
We shall see what happens now.
I will continue with my discussions with the Ombudsperson, because even if Craig is placed elsewhere, ther are so many people who have no one watching over them, I am afraid they may not have someone to notice this is happening to them too.
Someone has to care. Even if it is a perfect stranger.
His new roommate is already gone. He tried to converse, not making much sense.
I notice had tons of flaking skin in his hair. Brush is gone, found the comb. After 15 minutes of combing got most of it out.Must be relaxing for him, as he yawned thru most of it.
He's wearing pajama bottoms that aren't his, even tho he has clothes hanging in his closet.
I have no idea where this stuff keeps coming from.
After a few hours, I decide it's time to leave before the rain starts, and tell Craig I have to go home and feed the cat. He asks why I have to feed the cat. I say because he'll bite me if I don't feed him. He says that would be bad.
I start to leave and he calls my name, and starts to follow me. This is unusual. Then he starts saying toesover and over with mismatched words attached.
I ask if his toes hurt, and he says yes to my surprise.
Now I have seen him with some pretty severe injuries say they didn't hurt, so this gets my attention. I sit him down, pull off his shoes.They are caked in the tread with old food.Yuck!
Then I pull off his socks, and it is immediately apparent why his toes hurt.
His toe nails are so long they are growing back into his toes. And he has one on his right foot that is black and falling off. I get a pair pf scissors from my purse and clip them, with him saying ouch a few times. Then I find his slippers and put them on, as they have more give on his toes.
I kiss him and tell him I love him, and he says it back this time.
I go to the nurses station, no one there.I see a nurse up the hall, but am told she doesn't work that end.Nice.....
I find an aide and ask to leave a message for the nurse. I explain about Craig's toes, and ask to have them looked at.
As I am leaving the nurse comes in and I repeat the story to her.She says she will look at his toes.I am told the Podiatrist hasn't been in for a while. I say it doesn't take apodiatrist to cut nails that long and leave.
I wait, but as usual, hear nothing from the nursing home.
I understand bumps and falls, but the lack of basic care is more than I can handle.
Today I called the Ombudsperson, She said I should ask the Social worker where she tried to place Craig. I tell her she doesn't return my phone calls anymore. She tells me to leave a message saying I spoke to her.
Magic does exist! How quickly the call was returned this time.
I explain about the call, she asks what happened. I tell her about the toes. I tell her they are not equipped to handle him and ask for a placement at an AD facility.She says she will get right on that, and that she will have the director of Nursing services call me too talk about the care concerns.
We shall see what happens now.
I will continue with my discussions with the Ombudsperson, because even if Craig is placed elsewhere, ther are so many people who have no one watching over them, I am afraid they may not have someone to notice this is happening to them too.
Someone has to care. Even if it is a perfect stranger.
Saturday, August 15, 2009
New set of problems
It's been a busy week.
After waiting an hour in the room, leaving work early and arguing when the eye doctor wanted to leave, I finally got Craig's eyes examined. Took forever, no co-operation, but finally, Doc says he really only needs reading glasses, but we get Bi focals ordered so he can wear them all the time
without killing himself trying to walk. Doc says his eyes lok healthy, so his focusing problems must be from the AD.
Then find out the MA doesn't pay for the glasses.Wonder where I'm going to come up with this money......
Went again Friday and foud Craig sitting on an unused porta potty at the nurses station.After 15 minutes of coaxing, I finally got him up and down to his room, where he promptly flopped into a wheelchair. Got him to drink a whole quart of gatorade, as the nursing staff called to inform me he was dehydrating. Brought snack packs of m&m's which he really liked. Then the hospital intake person showed up with Craig's new roommate.
Tried vainly to get him up and out of the way so they vould get the wheelchair past. I finally grabbed the chair and pulled it and him across the room. THEN he gets up.......
Now he's off and running, dinner trays are coming, so I make my exit.
At home, my cell rings, which hardly ever happens, and for a minute, I am scared....
It's Amy from Cleveland.It seems that only people I haven't seen in years, and people I've never met are still concerned about me and what is going on with Craig.
By the way, Hi, Mark! Amy says you read my blog too. Thanks for caring!
And please keep reading Lisa's blog too.It is a good view on the opposite side of the fence.
In the mail I find the SSA letter stating Craig has been approved for Disability. At first I am thrilled, then the tax and medicaid implications start to roll thru my head and I am spastic.
I will need an attorney to figure it all out I'm sure.
Again, wonder where that money's going to come from.
Then the call comes from the nursing home. We found your husband on the floor during dinner.
They are not sure if he fell, layed down or had another seizure, so he is on watch for the next 3 days. They say he has no injuries, and that after a short while he ate, took another walk and went to bed.
I also noticed that the package I have been waiting for delivery on is taking an excessive amount of time to arrive, so I go onto the website, find out there is a USPS tracking link and click.
According to the tracking info, I received the package a week ago, while all 3 of us were home, and we had no mail that day. Send an e mail to customer service asking about a replacement package. I can't afford to lose a package with 150 dollars worth of goods in it to some crooked
postal worker. We'll see what the company has to say.
Looks like we're heading for another of my famous downhill slides. They keep telling me God only gives you what you can handle.
I think God has overestimated me sometimes......
After waiting an hour in the room, leaving work early and arguing when the eye doctor wanted to leave, I finally got Craig's eyes examined. Took forever, no co-operation, but finally, Doc says he really only needs reading glasses, but we get Bi focals ordered so he can wear them all the time
without killing himself trying to walk. Doc says his eyes lok healthy, so his focusing problems must be from the AD.
Then find out the MA doesn't pay for the glasses.Wonder where I'm going to come up with this money......
Went again Friday and foud Craig sitting on an unused porta potty at the nurses station.After 15 minutes of coaxing, I finally got him up and down to his room, where he promptly flopped into a wheelchair. Got him to drink a whole quart of gatorade, as the nursing staff called to inform me he was dehydrating. Brought snack packs of m&m's which he really liked. Then the hospital intake person showed up with Craig's new roommate.
Tried vainly to get him up and out of the way so they vould get the wheelchair past. I finally grabbed the chair and pulled it and him across the room. THEN he gets up.......
Now he's off and running, dinner trays are coming, so I make my exit.
At home, my cell rings, which hardly ever happens, and for a minute, I am scared....
It's Amy from Cleveland.It seems that only people I haven't seen in years, and people I've never met are still concerned about me and what is going on with Craig.
By the way, Hi, Mark! Amy says you read my blog too. Thanks for caring!
And please keep reading Lisa's blog too.It is a good view on the opposite side of the fence.
In the mail I find the SSA letter stating Craig has been approved for Disability. At first I am thrilled, then the tax and medicaid implications start to roll thru my head and I am spastic.
I will need an attorney to figure it all out I'm sure.
Again, wonder where that money's going to come from.
Then the call comes from the nursing home. We found your husband on the floor during dinner.
They are not sure if he fell, layed down or had another seizure, so he is on watch for the next 3 days. They say he has no injuries, and that after a short while he ate, took another walk and went to bed.
I also noticed that the package I have been waiting for delivery on is taking an excessive amount of time to arrive, so I go onto the website, find out there is a USPS tracking link and click.
According to the tracking info, I received the package a week ago, while all 3 of us were home, and we had no mail that day. Send an e mail to customer service asking about a replacement package. I can't afford to lose a package with 150 dollars worth of goods in it to some crooked
postal worker. We'll see what the company has to say.
Looks like we're heading for another of my famous downhill slides. They keep telling me God only gives you what you can handle.
I think God has overestimated me sometimes......
Sunday, August 9, 2009
My turn
I guess I have concentrated on Craig since starting this blog, but now days I am seeing the effect all this is having on me too.
Fitful sleep, aches and pains, headaches. I have a low tolerance level for things I would have laughed off in the past. But the biggest thing is the realization that I am alone. Alone in fighting
for Craig's dignity, alone in trying to keep him from thinking he's been abandoned, and alone in my personal life.
Craig has always been with me since I left home.We have never been apart. Now that the initial
flurry of making arrangements is over, I find that I have no ambition to interact with people.
I used to find solace in busying myself with making sure Craig was taken care of properly. Now that I have come to realize that I am wasting my breathe trying to improve his conditions, I have
stopped waiting for life to be Normal again. Life will never be normal again. I will never be normal again.
Fitful sleep, aches and pains, headaches. I have a low tolerance level for things I would have laughed off in the past. But the biggest thing is the realization that I am alone. Alone in fighting
for Craig's dignity, alone in trying to keep him from thinking he's been abandoned, and alone in my personal life.
Craig has always been with me since I left home.We have never been apart. Now that the initial
flurry of making arrangements is over, I find that I have no ambition to interact with people.
I used to find solace in busying myself with making sure Craig was taken care of properly. Now that I have come to realize that I am wasting my breathe trying to improve his conditions, I have
stopped waiting for life to be Normal again. Life will never be normal again. I will never be normal again.
Monday, July 20, 2009
Flip a coin
It has been a long week. I finally got the social worker on the phone, pnly to be told "she oesn't get medical updates" to "talk to the nurses' station".Guess the honeymoon's over!
In checking with the nurses station, I am told there have been no additional notes on my husband's seizure, except to increase his meds. I ask if there are any results from the EEG, nothing! I ask if they can get the results, and they tell me they can call the hospital and ask, but I should call the doctor. I ask them for his name, and find he has an office downtown.
I arrive to visit Craig expecting the same catatonic man I saw last visit, only to find him extremely alert, conversive, mobile and only slightly confused. We have our ritual chocolate pudding, and I give him the YooHoo drink box, but he cannot negotiate the straw, so I squeeze it into a paper cup.
His roommate is gone now, so he is alone in the room. After a bit of strange "conversation", he tells me he has to get to the car and get back to work. "Nothing is free you know!".
I am relieved that he seems to have recovered so well from the seizure and meds change.
I actually perform some "normal" household cleaning projects over the weekend. I actually anticipate the next visit with Craig with anxiety. The last time he seemed really up, was when he had the seizure during the night.
This visit was very different. He does recognize my voice, seems mildly co-operative....until we get to his room.
Now I have to chase him down to eat the pudding. He cannot negotiate the spoon or pudding cup. I feed it to him. He keeps grabbing my sleeve, and at one point tries to pull my thumb into his mouth. I get him onto the bed, and as usual, he falls backwards in an odd position. After a few minutes, I decide to try to swing his legs onto the bed and he yelps, saying that hurts. Then tells me the cat scratched him. I tell him there is no cat there, and now he says it is a dog. No sense arguing.
After trying vainly to talk to him, I notice he is making jerking movements intermittently. I ask if he wants to sit up. He tries, but can't get all the way upright. I offer help, but he is dead weight and fights me trying to sit him up. I ask him if his back hurts an he says yes. I tell him I am leaving and try to kiss him goodbye, but he wants nothing to do with it. I tell him I love him, no response. I gather my things, turn to leave, and tell him again I love him. He looks at me and says "bye Peg". Then starts to mumble about ingratiation.
I stop at the nurses' station and tell them about his back, but tell them he is irritated right now, so might want to wait a bit to check his back.
I actually have a nice chat with the nurses for the first time. I leave defeated again.
I hate the up and down of this disease. If I expect the worst each time, I will miss the few good pieces there are left. But if I let the good moments lift my expectations, I am always so sadly disappointed. Just like flipping a coin.....
In checking with the nurses station, I am told there have been no additional notes on my husband's seizure, except to increase his meds. I ask if there are any results from the EEG, nothing! I ask if they can get the results, and they tell me they can call the hospital and ask, but I should call the doctor. I ask them for his name, and find he has an office downtown.
I arrive to visit Craig expecting the same catatonic man I saw last visit, only to find him extremely alert, conversive, mobile and only slightly confused. We have our ritual chocolate pudding, and I give him the YooHoo drink box, but he cannot negotiate the straw, so I squeeze it into a paper cup.
His roommate is gone now, so he is alone in the room. After a bit of strange "conversation", he tells me he has to get to the car and get back to work. "Nothing is free you know!".
I am relieved that he seems to have recovered so well from the seizure and meds change.
I actually perform some "normal" household cleaning projects over the weekend. I actually anticipate the next visit with Craig with anxiety. The last time he seemed really up, was when he had the seizure during the night.
This visit was very different. He does recognize my voice, seems mildly co-operative....until we get to his room.
Now I have to chase him down to eat the pudding. He cannot negotiate the spoon or pudding cup. I feed it to him. He keeps grabbing my sleeve, and at one point tries to pull my thumb into his mouth. I get him onto the bed, and as usual, he falls backwards in an odd position. After a few minutes, I decide to try to swing his legs onto the bed and he yelps, saying that hurts. Then tells me the cat scratched him. I tell him there is no cat there, and now he says it is a dog. No sense arguing.
After trying vainly to talk to him, I notice he is making jerking movements intermittently. I ask if he wants to sit up. He tries, but can't get all the way upright. I offer help, but he is dead weight and fights me trying to sit him up. I ask him if his back hurts an he says yes. I tell him I am leaving and try to kiss him goodbye, but he wants nothing to do with it. I tell him I love him, no response. I gather my things, turn to leave, and tell him again I love him. He looks at me and says "bye Peg". Then starts to mumble about ingratiation.
I stop at the nurses' station and tell them about his back, but tell them he is irritated right now, so might want to wait a bit to check his back.
I actually have a nice chat with the nurses for the first time. I leave defeated again.
I hate the up and down of this disease. If I expect the worst each time, I will miss the few good pieces there are left. But if I let the good moments lift my expectations, I am always so sadly disappointed. Just like flipping a coin.....
Monday, July 13, 2009
At wits end
It's been a week since my last blog entry because of the events of the past week.
On Thursday, I made my usual trip to see Craig. I was surprised and encouraged when I arrived.
He was so lucid and friendly! Knew who I was, even commented on a news story on the tv. After being there for a while, he kind of laid back on the bed and started pulling his legs up into a kind of fetal position. I asked if his back hurt, and he said "Not anymore". After a couple of kisses and hugs,
he drifted off to sleep.
I was wakened at 2am to my son telling me I needed to take the phone call. It was the nurse from the nursing home telling me that Craig woke up and said he needed to use the toilet, and that they had put him on the toilet, only to have him yell loudly and start to seize. She said they had gotten him to the floor safely, but the seizure had lasted 3 minutes ( a long one), and that the doctor wanted to send him to the hospital. I quickly agreed. Why would you even have to ask?
In the morning, after laying awake most of the night, I called the nursing home, and they told me to call the ER.
After 3 hang ups, I finally asked for admissions and was told he was admitted, and they transferred the call to his room. Now forgive me if I seem like an idiot, but why would you send a call to a room with a sedated Alzheimer's patient?
I hang up and call back, asking for the nurses station. I ask the nurse why he was admitted, and she says I will have to ask the doctor. I ask if I can leave my cell number, and she reluctantly takes it down.
Now I do not know the name of the doctor who is seeing him, and wait for a call. I dress and go to work, hoping to avoid yet another day with no pay. I explain to my boss what has happened and bury myself in the work.
Several hours later, the hospital nurse calls to say that they are trying to schedule an EEG, and that if they can get it done today they will, but if they can't they will send him back to the nursing home.
Several more hours later, the hopital social worker calls to say he is scheduled for 1pm, and that theu will return him to the nursing home around 3pm. For the first time I am speaking to someone who actually gives me some information! I ask how long until the results are back and she says later that day, or Monday.
I wait to get a call saying Craig has arrived at the nursing home. Silly me!
I go to the nursing home on Sunday after I am sure he is rested and no longer sedated from his hospital trip. I stop at the nurses station, and ask how he is. After looking around at each other,
one of the CNA's says he was finally up today. That is ominous.
When I arrive in his room, his roommate is gone home, and Craig is sleeping. I wake him and tell him I brought coffee and pudding. He looks at me with dead eyes. I realize he has no idea who I am. After a lot of prompting, I get him to sit up. He stands and stares for a minute and heads for the door. I ask him where he is going and he says to the car. A blank stare follows as I tell him he has no car. he shuffles off out of the room several times, and I return him each time, finally getting him to focus on the coffee I brought.
Iplace it in his hand, and as I start to release the cup, realize he is not gripping it. My hand under the cup, we finally get it to his mouth, and he turns to leave again. Another redirect to the pudding cups. He tries to pick up the spoon, but cannot grip it, and starts to dip his fingers in the pudding. I retrieve paper towels from the bathroom, clean his fingers and place the spoon in his fingers. He stirs the pudding into an almost liquid, pulls the spoon out, and pudding runs all over him and the floor.
I start to wipe the floor, and realize he is falling back on the bed.I take the pudding cup and see that it has poured onto his stomach. More clean up.
By this time, he is starting to close his eyes again. I hold his hand and he grips back. I cover him with his blankets, his hands are cold. My eyes fill with tears as I look at this man who has been so strong willed and independent all his life reduced to this shell of his former self.
Then I see him looking at my face and his eyes start to water too. He closes his eyes and falls asleep. I have to leave before I start to blubber.
Monday first thing, I call the social worker at the nursing home.In a meeting, leave a message.
I want to talk to the doctor, need to know if the condition he is in is due to the seizure, the meds, or another advancement in his condition. I want to know what the EEG found.
I sit at my desk waiting for the phone to ring, afraid to use the restroom, afraid I'll miss the call.
At 4pm, I call again, and am told she has left for the day. I think she is avoiding me by leaving early.
How can people not understand the need to know what is happening? What if it was YOUR Husband/Wife/Mother/Father/Brother/ Sister/Son/Daughter? Wouldn't you lose your mind worrying? Wouldn't you be afraid the next call would be one you could do nothing about?
My Sister and Brother say I should report the entire bunch for the treatment ( or lack of) that we are receiving. I just want him to have a little care and dignity. Just because he can't complain doesn't mean he shouldn't get the same respect as anyone else.
We will see what happens tomorrow. Maybe that will be the day I finally get pissed off enough to call the ombudsperson.
On Thursday, I made my usual trip to see Craig. I was surprised and encouraged when I arrived.
He was so lucid and friendly! Knew who I was, even commented on a news story on the tv. After being there for a while, he kind of laid back on the bed and started pulling his legs up into a kind of fetal position. I asked if his back hurt, and he said "Not anymore". After a couple of kisses and hugs,
he drifted off to sleep.
I was wakened at 2am to my son telling me I needed to take the phone call. It was the nurse from the nursing home telling me that Craig woke up and said he needed to use the toilet, and that they had put him on the toilet, only to have him yell loudly and start to seize. She said they had gotten him to the floor safely, but the seizure had lasted 3 minutes ( a long one), and that the doctor wanted to send him to the hospital. I quickly agreed. Why would you even have to ask?
In the morning, after laying awake most of the night, I called the nursing home, and they told me to call the ER.
After 3 hang ups, I finally asked for admissions and was told he was admitted, and they transferred the call to his room. Now forgive me if I seem like an idiot, but why would you send a call to a room with a sedated Alzheimer's patient?
I hang up and call back, asking for the nurses station. I ask the nurse why he was admitted, and she says I will have to ask the doctor. I ask if I can leave my cell number, and she reluctantly takes it down.
Now I do not know the name of the doctor who is seeing him, and wait for a call. I dress and go to work, hoping to avoid yet another day with no pay. I explain to my boss what has happened and bury myself in the work.
Several hours later, the hospital nurse calls to say that they are trying to schedule an EEG, and that if they can get it done today they will, but if they can't they will send him back to the nursing home.
Several more hours later, the hopital social worker calls to say he is scheduled for 1pm, and that theu will return him to the nursing home around 3pm. For the first time I am speaking to someone who actually gives me some information! I ask how long until the results are back and she says later that day, or Monday.
I wait to get a call saying Craig has arrived at the nursing home. Silly me!
I go to the nursing home on Sunday after I am sure he is rested and no longer sedated from his hospital trip. I stop at the nurses station, and ask how he is. After looking around at each other,
one of the CNA's says he was finally up today. That is ominous.
When I arrive in his room, his roommate is gone home, and Craig is sleeping. I wake him and tell him I brought coffee and pudding. He looks at me with dead eyes. I realize he has no idea who I am. After a lot of prompting, I get him to sit up. He stands and stares for a minute and heads for the door. I ask him where he is going and he says to the car. A blank stare follows as I tell him he has no car. he shuffles off out of the room several times, and I return him each time, finally getting him to focus on the coffee I brought.
Iplace it in his hand, and as I start to release the cup, realize he is not gripping it. My hand under the cup, we finally get it to his mouth, and he turns to leave again. Another redirect to the pudding cups. He tries to pick up the spoon, but cannot grip it, and starts to dip his fingers in the pudding. I retrieve paper towels from the bathroom, clean his fingers and place the spoon in his fingers. He stirs the pudding into an almost liquid, pulls the spoon out, and pudding runs all over him and the floor.
I start to wipe the floor, and realize he is falling back on the bed.I take the pudding cup and see that it has poured onto his stomach. More clean up.
By this time, he is starting to close his eyes again. I hold his hand and he grips back. I cover him with his blankets, his hands are cold. My eyes fill with tears as I look at this man who has been so strong willed and independent all his life reduced to this shell of his former self.
Then I see him looking at my face and his eyes start to water too. He closes his eyes and falls asleep. I have to leave before I start to blubber.
Monday first thing, I call the social worker at the nursing home.In a meeting, leave a message.
I want to talk to the doctor, need to know if the condition he is in is due to the seizure, the meds, or another advancement in his condition. I want to know what the EEG found.
I sit at my desk waiting for the phone to ring, afraid to use the restroom, afraid I'll miss the call.
At 4pm, I call again, and am told she has left for the day. I think she is avoiding me by leaving early.
How can people not understand the need to know what is happening? What if it was YOUR Husband/Wife/Mother/Father/Brother/ Sister/Son/Daughter? Wouldn't you lose your mind worrying? Wouldn't you be afraid the next call would be one you could do nothing about?
My Sister and Brother say I should report the entire bunch for the treatment ( or lack of) that we are receiving. I just want him to have a little care and dignity. Just because he can't complain doesn't mean he shouldn't get the same respect as anyone else.
We will see what happens tomorrow. Maybe that will be the day I finally get pissed off enough to call the ombudsperson.
Tuesday, July 7, 2009
The Birthday came....and went
For me , birthdays are special.
Being born on Christmas Eve, and having my birthday forgotten, ignored, combined with Christmas, makes it a special event to me.
I spent the weekend plotting and planning, worrying what I could give for a gift that he would be able to appreciate. I also tried to decide whether to take the time off work to spend the day with him, on what might be the last birthday he will remember. I tried in vain to talk the boys into
visiting their Dad.
At the last minute, I called work to tell them I would not be in, and gathered up the gifts, went to the bakery, and headed off to the nursing home, pleased with myself that I was going to make his birthday special.
When I arrived, Craig was asleep, which gave me time to decorate the room and the pie and cake I brought. I also brought the camcorder, thinking I would take videos of him opening the gifts and smiling.
Wrong again! When he woke, he had no idea who I was. I asked if he wanted pie, no problem there! His roommate and I sang "Happy Birthday", as they ate the pie, the Craig had cake, chocolate milk and Peach smoothie. I tried to interest him in the gifts, but he just laughed that
I'm confused laugh, as I pulled the presents out and showed them to him.
Even the cards from the boys and me were stared at and dropped. I tried to give him a kiss and
no co-operation....guess he thought his wife would get mad.
The aid came in and introduced herself. She said he tells her everyday that his wife is coming.
I tell her it's too bad he doesn't know she's there......
He's off and running again! I clean up, after unsuccessfully trying to get even the nursing home staff to have cake with us., tuck my tail between my legs and retreat.
On the way down the hall, Craig looks at me and tells me my waist is too big....add insult to injury.....
At home, I sit on his bed, look around and lay down and cry myself to sleep. I can only imagine what he must think, since his "wife" didn't come for his birthday.
Not that our marriage was perfect, but before this disease, we did pretty good. There has to something when you've been together 36 years. I miss my friend as much, maybe more than my husband.
Being born on Christmas Eve, and having my birthday forgotten, ignored, combined with Christmas, makes it a special event to me.
I spent the weekend plotting and planning, worrying what I could give for a gift that he would be able to appreciate. I also tried to decide whether to take the time off work to spend the day with him, on what might be the last birthday he will remember. I tried in vain to talk the boys into
visiting their Dad.
At the last minute, I called work to tell them I would not be in, and gathered up the gifts, went to the bakery, and headed off to the nursing home, pleased with myself that I was going to make his birthday special.
When I arrived, Craig was asleep, which gave me time to decorate the room and the pie and cake I brought. I also brought the camcorder, thinking I would take videos of him opening the gifts and smiling.
Wrong again! When he woke, he had no idea who I was. I asked if he wanted pie, no problem there! His roommate and I sang "Happy Birthday", as they ate the pie, the Craig had cake, chocolate milk and Peach smoothie. I tried to interest him in the gifts, but he just laughed that
I'm confused laugh, as I pulled the presents out and showed them to him.
Even the cards from the boys and me were stared at and dropped. I tried to give him a kiss and
no co-operation....guess he thought his wife would get mad.
The aid came in and introduced herself. She said he tells her everyday that his wife is coming.
I tell her it's too bad he doesn't know she's there......
He's off and running again! I clean up, after unsuccessfully trying to get even the nursing home staff to have cake with us., tuck my tail between my legs and retreat.
On the way down the hall, Craig looks at me and tells me my waist is too big....add insult to injury.....
At home, I sit on his bed, look around and lay down and cry myself to sleep. I can only imagine what he must think, since his "wife" didn't come for his birthday.
Not that our marriage was perfect, but before this disease, we did pretty good. There has to something when you've been together 36 years. I miss my friend as much, maybe more than my husband.
Thursday, July 2, 2009
I'm so confused...
It's been a while since my last post. Several visits since the last post have me so confused.
Monday, Craig was asleep when I arrived.I woke him, he looked at me for a minute, and I held his hand as he drifted back to sleep.Left the cookies and YooHoo I brought for him.
Made myself wait until Thursday to visit again. His roommate will be leaving in a few weeks,
and I will have no outside inout into his behavior when I am not there.
Craig seems in great spirits as I arrive and find him almost right at the entry door. He puts his arm around my waist and we walk to his room.He eats the pudding I brought for him with a smile on his face.My spirits are lifting.
The charge nurse comes in and hands Craig his meds, and reality smacks me ...
" I don't take any pills" The argument ensues, and the nurse says he will try again later.
Now the familiar behaviors come rushing to the surface again, incoherent phrases, repetitive
small finger motions, the inability to sit or stand still.
I ask him what kind of cake and ice cream he wants for his birthday, on the sixth try, I get
:banana cream pie". Now I tell him I have to leave and he walks me down the hall asking me
if today is someone's birthday. No, Craig, Monday is your birthday. You will be 56.
I feel like the directions on the shampoo bottle, repeat, repeat, repeat.
Hopefully, he will take his meds later. I see his up and down swings and wonder, is the medicine really helping? Or are we just dragging out the suffering for him. I know that he would be horrified at his situation if he was still able to understand it. He would never want to live like this.
I remember him telling me many times that his father told him there were 3 places you never wanted to go; prison, the military and a mental hospital... because they own you in all 3.
I think Craig would add one to that....
Monday, Craig was asleep when I arrived.I woke him, he looked at me for a minute, and I held his hand as he drifted back to sleep.Left the cookies and YooHoo I brought for him.
Made myself wait until Thursday to visit again. His roommate will be leaving in a few weeks,
and I will have no outside inout into his behavior when I am not there.
Craig seems in great spirits as I arrive and find him almost right at the entry door. He puts his arm around my waist and we walk to his room.He eats the pudding I brought for him with a smile on his face.My spirits are lifting.
The charge nurse comes in and hands Craig his meds, and reality smacks me ...
" I don't take any pills" The argument ensues, and the nurse says he will try again later.
Now the familiar behaviors come rushing to the surface again, incoherent phrases, repetitive
small finger motions, the inability to sit or stand still.
I ask him what kind of cake and ice cream he wants for his birthday, on the sixth try, I get
:banana cream pie". Now I tell him I have to leave and he walks me down the hall asking me
if today is someone's birthday. No, Craig, Monday is your birthday. You will be 56.
I feel like the directions on the shampoo bottle, repeat, repeat, repeat.
Hopefully, he will take his meds later. I see his up and down swings and wonder, is the medicine really helping? Or are we just dragging out the suffering for him. I know that he would be horrified at his situation if he was still able to understand it. He would never want to live like this.
I remember him telling me many times that his father told him there were 3 places you never wanted to go; prison, the military and a mental hospital... because they own you in all 3.
I think Craig would add one to that....
Thursday, June 25, 2009
Another road block
I finally got the social worker to answer my call.The hospital I was trying to have evaluate Craig's meds say he's not in crisis, so no help.She also says there are no psychiatrists that will take his medical card except the one I don't want to see him anymore.
Wednesday, I am excited.I am going to a support group meeting for the first time. I arrive early, as usual.I meet the gentleman running the group, and several others also arrive.We each tell about our loved ones and our situation, and tell what we need from this meeting.
The others are caregivers for a family member at home, so their situation is different. When I tell my story, I say I am looking for help in getting my husband better care.
I guess I spend a lot of time researching and talking to others, because I seem to know things that are still questions for the others.
The gentleman running the meeting gives me his card and some literature, and suggests that I call the local chapter for advise, and perhaps consider the idea of stating a support group for
Early Onset families.
I tell him I would be glad to help others that find themselves in this unusual circumstance, but that I think that it will be the new wave of AD patients soon.
Thursday, I get a call at work. The speech therapist is calling.I am confused. She tells me that Craig is having difficulty chewing his food, and they are going to ask the doctor to put him on a soft diet. Another step........
I stop on the way from work and buy soft foods for him. He has bruises and nicks on his left hand and wrist again, but laughs when I ask if he hurt himself. He laughs a lot these days.
I think he laughs when he doesn't understand.
The aide brings in his regula dinner, but he picks and insists on getting back to his unending walking. I kiss him goodbye, and he tells me he really likes me.........
I need to find time to call the local chapter soon.
Wednesday, I am excited.I am going to a support group meeting for the first time. I arrive early, as usual.I meet the gentleman running the group, and several others also arrive.We each tell about our loved ones and our situation, and tell what we need from this meeting.
The others are caregivers for a family member at home, so their situation is different. When I tell my story, I say I am looking for help in getting my husband better care.
I guess I spend a lot of time researching and talking to others, because I seem to know things that are still questions for the others.
The gentleman running the meeting gives me his card and some literature, and suggests that I call the local chapter for advise, and perhaps consider the idea of stating a support group for
Early Onset families.
I tell him I would be glad to help others that find themselves in this unusual circumstance, but that I think that it will be the new wave of AD patients soon.
Thursday, I get a call at work. The speech therapist is calling.I am confused. She tells me that Craig is having difficulty chewing his food, and they are going to ask the doctor to put him on a soft diet. Another step........
I stop on the way from work and buy soft foods for him. He has bruises and nicks on his left hand and wrist again, but laughs when I ask if he hurt himself. He laughs a lot these days.
I think he laughs when he doesn't understand.
The aide brings in his regula dinner, but he picks and insists on getting back to his unending walking. I kiss him goodbye, and he tells me he really likes me.........
I need to find time to call the local chapter soon.
Monday, June 22, 2009
Father's Day
It's been a while since I had the time or the energy to post.
Called the nursing home Friday and left a message for the social worker asking about the referral to the hospital for Craig's meds and to ask about the treatment plan meeting which they scheduled for the last day of July.
Let's start with how can you go over a treatment plane for someone who's treatment is in limbo?
And to schedule it during the last day of the month for someone in accounting? Almost like they don't want me there.
Waited all day, no return call.
Spent all day Saturday catching up laundry I haven't done so sis could get ready for vacation.
Argued with sons about visiting their Dad. Older one says makes him too angry to see the way his dad is treated. Younger one says he doesn't like him and won't go. Try to explain that soon he won't know them, and nothing.
Calls from 2 of my friends to see how I'm doing this week. Nice to know someone cares. Nothing from family as usual.
Father's day is here, and I package up the new beard and mustache trimmer and head out.
Stop at store, buy ice cream, chocolate milk and pudding.
Arrive at nursing home and he's not in his room, but roommate says Craig told him "he lost everything because he was a bad father".
Found him walking as usual. Still trying to understand why he turns and walks away when I call his name. I wish him happy father's day, and he asks me why his wife doesn't come to see him anymore.Sigh.......
I tell him I am his wife and get him to the room with the word chocolate. I trim his hair and shave his neck. Then we try to trim the mustache. After a minute or so, starts fidgeting so stop.
He says it 's pulling hairs. Dinner arrives.I think how much will he eat after all that chocolate stuff? He eats almost everything!
I am amazed that he has sat with me for almost 2 hours without leaving.Now he is up and walking again, so I say my good byes, get a kiss and head out to grocery shop.
I wait all day Monday, and STILL no call back from the social worker. Call the local AD support group for directions. There is a meeting Wednesday night, so I will make my 1st trip to a support meeting this week.
Called the nursing home Friday and left a message for the social worker asking about the referral to the hospital for Craig's meds and to ask about the treatment plan meeting which they scheduled for the last day of July.
Let's start with how can you go over a treatment plane for someone who's treatment is in limbo?
And to schedule it during the last day of the month for someone in accounting? Almost like they don't want me there.
Waited all day, no return call.
Spent all day Saturday catching up laundry I haven't done so sis could get ready for vacation.
Argued with sons about visiting their Dad. Older one says makes him too angry to see the way his dad is treated. Younger one says he doesn't like him and won't go. Try to explain that soon he won't know them, and nothing.
Calls from 2 of my friends to see how I'm doing this week. Nice to know someone cares. Nothing from family as usual.
Father's day is here, and I package up the new beard and mustache trimmer and head out.
Stop at store, buy ice cream, chocolate milk and pudding.
Arrive at nursing home and he's not in his room, but roommate says Craig told him "he lost everything because he was a bad father".
Found him walking as usual. Still trying to understand why he turns and walks away when I call his name. I wish him happy father's day, and he asks me why his wife doesn't come to see him anymore.Sigh.......
I tell him I am his wife and get him to the room with the word chocolate. I trim his hair and shave his neck. Then we try to trim the mustache. After a minute or so, starts fidgeting so stop.
He says it 's pulling hairs. Dinner arrives.I think how much will he eat after all that chocolate stuff? He eats almost everything!
I am amazed that he has sat with me for almost 2 hours without leaving.Now he is up and walking again, so I say my good byes, get a kiss and head out to grocery shop.
I wait all day Monday, and STILL no call back from the social worker. Call the local AD support group for directions. There is a meeting Wednesday night, so I will make my 1st trip to a support meeting this week.
Wednesday, June 17, 2009
Murphy's Law
Tuesday Morning I woke to the alarm, pulled myself out of bed, and headed for the bathroom.
What is the puddle on the floor? Seems someone stuffed something behind the garbage cans and turned off the upright freezer! Turn freezer back on, cat's are howling for breakfast and attention.
No coffee! walk to living room to ask about freezer, both kids sound asleep.
Make coffee, feed cats, curse , get dressed and head to work.
Call home at 11 am, sons says "just throw it all out". I say maybe you can go without eating for a few months to make up for the food that thawed. Silence.
Finish work, run home. Check freezer contents, and pull contents that are questionable.
Wash dishes, cook the questionable meat, wash more dishes.
Text chat buddy to tell her my day sucks, end up on phone.Listen more than talk. Sorry have to get off phone to run errand. Onto chat. Everyone deserts me. Back to phone.
Here voice at back door, brother looking for company I think.
Give him some of the thawed meat, shower and to bed.
Wednesday morning grab things to take to Nursing home after work. Remote I bought for the roommate, and snacking food. morning routine and off to work.
Realize that batteries are needed for the remote, so stop at dollar store. One register open, stand in line for half an hour. debit card reader will not work. Cashier says " do you have another payment method?". "No" would you like me to hold them while you go to the bank? "No, I would like my things after standing in line." well I can't fix the machine! In the mean time, the newly opened cash register is checking everyone thru WITH their debit card.
I think to myself " I wonder if common sense is part of the PHD program, since no one seems to have it anymore".
On to the hardware store next door, buy batteries at twice the price and rush to the NH for dinner time.
Found hubby walking the halls again. He is so pale! It takes me 3 tries to get his attention.
I have to take him by the hand to get him to his room, promosing him coffee when he gets there.
The aide drops and runs, and I sit down to help him with dinner.
Plastic wrap is the enemy of AZ patients! Craig cannot figure out why he cant pick up his roll.
I ask him if he wants me to put sugar and milk in his coffee. He says yes, but picks up the cup, with the lid still on, and tries to drink.
After several tries, I get him to put it down to take the lid off and 2 more tries before I get the sugar and milk in . I unwrap his food. he picks up the spoon, and tries to pick up food, but pushes it all over his tray, I cut it up with the fork, and he gets it onto the spoon, but can't maneuver it into his mouth and reverts to his fingers.
I am trying to get napkins into place to catch the overflow, and trying to convince him to try the spoon again.
Finally, he has had enough and gets up, walking in place again. Iask if he doesn't want to visit with me and he sits down, they lays back on the bed.
I place his pillow under his head, sit next to him and hold his hand. I remind him that I always said he had beautiful eyes, and that he should let the eye doctor get him glasses so he can see mine. he grabs my sleeve and stares at me. He says he likes my shirt. I tell him I got it in India when I was there. More blank stare.
Now up and walking again, I tell him I need to go home to make dinner for the boys.I ask for a kiss, and I get 2 ( and a grope).
Another day of watching him be ignored by the NH staff. I am so sad......
What is the puddle on the floor? Seems someone stuffed something behind the garbage cans and turned off the upright freezer! Turn freezer back on, cat's are howling for breakfast and attention.
No coffee! walk to living room to ask about freezer, both kids sound asleep.
Make coffee, feed cats, curse , get dressed and head to work.
Call home at 11 am, sons says "just throw it all out". I say maybe you can go without eating for a few months to make up for the food that thawed. Silence.
Finish work, run home. Check freezer contents, and pull contents that are questionable.
Wash dishes, cook the questionable meat, wash more dishes.
Text chat buddy to tell her my day sucks, end up on phone.Listen more than talk. Sorry have to get off phone to run errand. Onto chat. Everyone deserts me. Back to phone.
Here voice at back door, brother looking for company I think.
Give him some of the thawed meat, shower and to bed.
Wednesday morning grab things to take to Nursing home after work. Remote I bought for the roommate, and snacking food. morning routine and off to work.
Realize that batteries are needed for the remote, so stop at dollar store. One register open, stand in line for half an hour. debit card reader will not work. Cashier says " do you have another payment method?". "No" would you like me to hold them while you go to the bank? "No, I would like my things after standing in line." well I can't fix the machine! In the mean time, the newly opened cash register is checking everyone thru WITH their debit card.
I think to myself " I wonder if common sense is part of the PHD program, since no one seems to have it anymore".
On to the hardware store next door, buy batteries at twice the price and rush to the NH for dinner time.
Found hubby walking the halls again. He is so pale! It takes me 3 tries to get his attention.
I have to take him by the hand to get him to his room, promosing him coffee when he gets there.
The aide drops and runs, and I sit down to help him with dinner.
Plastic wrap is the enemy of AZ patients! Craig cannot figure out why he cant pick up his roll.
I ask him if he wants me to put sugar and milk in his coffee. He says yes, but picks up the cup, with the lid still on, and tries to drink.
After several tries, I get him to put it down to take the lid off and 2 more tries before I get the sugar and milk in . I unwrap his food. he picks up the spoon, and tries to pick up food, but pushes it all over his tray, I cut it up with the fork, and he gets it onto the spoon, but can't maneuver it into his mouth and reverts to his fingers.
I am trying to get napkins into place to catch the overflow, and trying to convince him to try the spoon again.
Finally, he has had enough and gets up, walking in place again. Iask if he doesn't want to visit with me and he sits down, they lays back on the bed.
I place his pillow under his head, sit next to him and hold his hand. I remind him that I always said he had beautiful eyes, and that he should let the eye doctor get him glasses so he can see mine. he grabs my sleeve and stares at me. He says he likes my shirt. I tell him I got it in India when I was there. More blank stare.
Now up and walking again, I tell him I need to go home to make dinner for the boys.I ask for a kiss, and I get 2 ( and a grope).
Another day of watching him be ignored by the NH staff. I am so sad......
Monday, June 15, 2009
More fun for the caregiver
Saturday, I went to the bank to open an account for Craig's SSI allowance checks. First the woman tells me she cannot open an account without him there. Now it is necessary to explain
to her about hubby. I produce the Rep payee form from SS, and we painstakingly go thru the
long process of opening the account.
While we are ting, she mentions her Mother is caring for her Grandmother and is having a hard time finding help.I give her the web address and tell her about ALZ.org. She says she didn't know there was a website.
One and a half hours to open a checking account.What fun!
Back to the house to empty out the metal closet I promised my sister because my brother is coming to stay with her. After 4 hours of moving things around, it is finally ready.
Brother arrives, and soon Sis calls to ask if i have any Dawn. Yes, Why? Brothers cats have fleas, momma and 6 4 week old kittens.
Five adults and several hours later, we have bathed and dried them all after trips to my place for a box and a blanket.
Up Sunday, off to my co-worker's place for some plants she is going to give me. Stop for gas, $10
should last me a while. Follow directions, and end up in the middle of God's country, cell phone has no signal. Where the hell am I? Turn around and head back to town.Still no answer from co-worker. I think maybe I didn't go far enough.
Up the mountains again, only this time I see a sign for a town I KNOW is nowhere near where I am going. Finally get text from co-worker. Seems the "hump" she wrote down meant right then left......
Finally get there and get plants chat awhile, have to go, time to see hubby.
Stop at local market, by dinner from hot foods counter and a qt of chocolate milk.
Arrive at NH, hubby walking in hall as usual. "Hi, Craig!" Hi! " You keep telling me you miss my cooking, so I brought dinner and chocolate milk" Chocolate milk?
He follows the chocolate milk down the hall, telling me "Peg isn't here". I tell him I am Peg, and he asks when he is going to get his 3 hours with his kids.
I'm not sure if he thinks he is divorced (has happened a lot) or if he thinks he is in jail.
Off to the room.I pull the tray over, and after 3 tries , get Craig to sit down by pouring him chocolate milk. I set up the food and cut it up. Craig picks up the fork, and after a few tries puts it down in favor of the spoon. 3 bites, more choc milk. No more until you eat some food.
Tries to pick up meat with spoon, but pushes it around and goes to carrots and potatoes.
More choc milk? I am back in the days when I had to do this with my sons.......
Actually, that's the most I've seen him eat in a while, and he obliterated the chocolate milk.
Now that the choc milk is gone, he's off down the hall. The nurse asks him why he is leaving me behind. "I want her to go away!" My heart breaks again......
Monday I get a call from the Social worker. Craig has refused to allow his eye exam for glasses.
And she cannot find a Psychiatrist that will take his medical card.
We will have to send him to an out of town hospital with an AD unit to get his meds straightened out. I tell her whatever it takes to get him back to what little he was able to do on his own again.
I tell her that there is a new wave coming, of younger people with this disease, and that they need to prepare. New ways of caregiving for people still in their prime, still vital, with the challenges of EOAD.
Maybe if I tell enough people, they will listen, and the next family will not have to go thru the
same obstacle course we are facing.
Hell, I'd like to yell it from the roof top! Your time will come!
I tell her that
to her about hubby. I produce the Rep payee form from SS, and we painstakingly go thru the
long process of opening the account.
While we are ting, she mentions her Mother is caring for her Grandmother and is having a hard time finding help.I give her the web address and tell her about ALZ.org. She says she didn't know there was a website.
One and a half hours to open a checking account.What fun!
Back to the house to empty out the metal closet I promised my sister because my brother is coming to stay with her. After 4 hours of moving things around, it is finally ready.
Brother arrives, and soon Sis calls to ask if i have any Dawn. Yes, Why? Brothers cats have fleas, momma and 6 4 week old kittens.
Five adults and several hours later, we have bathed and dried them all after trips to my place for a box and a blanket.
Up Sunday, off to my co-worker's place for some plants she is going to give me. Stop for gas, $10
should last me a while. Follow directions, and end up in the middle of God's country, cell phone has no signal. Where the hell am I? Turn around and head back to town.Still no answer from co-worker. I think maybe I didn't go far enough.
Up the mountains again, only this time I see a sign for a town I KNOW is nowhere near where I am going. Finally get text from co-worker. Seems the "hump" she wrote down meant right then left......
Finally get there and get plants chat awhile, have to go, time to see hubby.
Stop at local market, by dinner from hot foods counter and a qt of chocolate milk.
Arrive at NH, hubby walking in hall as usual. "Hi, Craig!" Hi! " You keep telling me you miss my cooking, so I brought dinner and chocolate milk" Chocolate milk?
He follows the chocolate milk down the hall, telling me "Peg isn't here". I tell him I am Peg, and he asks when he is going to get his 3 hours with his kids.
I'm not sure if he thinks he is divorced (has happened a lot) or if he thinks he is in jail.
Off to the room.I pull the tray over, and after 3 tries , get Craig to sit down by pouring him chocolate milk. I set up the food and cut it up. Craig picks up the fork, and after a few tries puts it down in favor of the spoon. 3 bites, more choc milk. No more until you eat some food.
Tries to pick up meat with spoon, but pushes it around and goes to carrots and potatoes.
More choc milk? I am back in the days when I had to do this with my sons.......
Actually, that's the most I've seen him eat in a while, and he obliterated the chocolate milk.
Now that the choc milk is gone, he's off down the hall. The nurse asks him why he is leaving me behind. "I want her to go away!" My heart breaks again......
Monday I get a call from the Social worker. Craig has refused to allow his eye exam for glasses.
And she cannot find a Psychiatrist that will take his medical card.
We will have to send him to an out of town hospital with an AD unit to get his meds straightened out. I tell her whatever it takes to get him back to what little he was able to do on his own again.
I tell her that there is a new wave coming, of younger people with this disease, and that they need to prepare. New ways of caregiving for people still in their prime, still vital, with the challenges of EOAD.
Maybe if I tell enough people, they will listen, and the next family will not have to go thru the
same obstacle course we are facing.
Hell, I'd like to yell it from the roof top! Your time will come!
I tell her that
Friday, June 12, 2009
I used to love Fridays
Yesterday began with a call to work to tell them I would be late (again).
Wait for the government to start the business day, call the number on the new form asking my husband to provide MY insurance info. As usual, sent to voice mail. Leave a message asking her to return the call, and explaining that they are wasting time sending the mail to the nursing home, and can they please redirect it to our home address. Inform them that a court order is required to add hubby outside of open enrollment, plus a doctor's statement of health. Also tell her that pre-
existing conditions are not covered for 2 years.
Wait for return phone call.
In the meantime, place call to Head of nursing at the nursing home to ask about the new psychiatrist. Of course, she is not in, so I ask for the Social worker.
Apparently, they screen her calls now, so had to ID for the operator before she connected me.
I explained that the NS was not in, and I had not heard anything.She tells me that the Psychiatrist that I "requested" does not accept Medicaid patients. I tell her I did not request him, he was suggested by the NS. She asks do I have anyone else in mind.
I reply that he saw several when he was in the mental hospital, and give her the name of the one who actually bothered to speak to me BEFORE he evaluated my husband.
We will see if that works.
It is now time to return to work, but still no call from Medicaid, so I fill in the new form myself
with my work info, scan it into the computer and email the form to the address from the voicemail greeeting, along with an explanation of why I think it will not work.
Off to work.Stay later to make up some time.Can't make it all up, but having to take all this time off is seriously hurting my budget (or lack thereof).
I receive text from sis on her way to work telling me my brother in Georgia, will be moving in with her this weekend.
Don't know what happened, but then again, he hasn't really shared anything with me in a long time.
I need some friendly interaction, and I am concerned about one of my new found friends on the Alzheimer' s org chat room, so off I go.
After chatting for a while, my friend logs in and tells us her Dad passed away that morning.
Try to comfort her long distance, as we all do, and can't help thinking about our future. Another
loss to come after so many already passed. I should call my hubby's stepmother she has terminal throat cancer, and his brother to check on his Mom in her Alzheimer's unit.
While on line, phone rings. Fear strikes me! What has hubby done now?
It is Sis telling me they got sent home due to computer errors at work. Now will have to work her day off to catch up.
Finally feed cats and am ready for bed when it hits me, I was supposed to make food for a wedding potluck at work.
Oh, well another night with 4 hours of sleep........
Friday has gone pretty well so far, I goofed off a lot today.
Sister texts to ask if she can have the metal closet in my living room. Sure.
Arrive home. Tell kids to move speaker so the Closet can go to my sister. 1/2 hour of arguing over where to put it.
Tomorrow will be a busy day.
Think I will try not to think tonight............
Wait for the government to start the business day, call the number on the new form asking my husband to provide MY insurance info. As usual, sent to voice mail. Leave a message asking her to return the call, and explaining that they are wasting time sending the mail to the nursing home, and can they please redirect it to our home address. Inform them that a court order is required to add hubby outside of open enrollment, plus a doctor's statement of health. Also tell her that pre-
existing conditions are not covered for 2 years.
Wait for return phone call.
In the meantime, place call to Head of nursing at the nursing home to ask about the new psychiatrist. Of course, she is not in, so I ask for the Social worker.
Apparently, they screen her calls now, so had to ID for the operator before she connected me.
I explained that the NS was not in, and I had not heard anything.She tells me that the Psychiatrist that I "requested" does not accept Medicaid patients. I tell her I did not request him, he was suggested by the NS. She asks do I have anyone else in mind.
I reply that he saw several when he was in the mental hospital, and give her the name of the one who actually bothered to speak to me BEFORE he evaluated my husband.
We will see if that works.
It is now time to return to work, but still no call from Medicaid, so I fill in the new form myself
with my work info, scan it into the computer and email the form to the address from the voicemail greeeting, along with an explanation of why I think it will not work.
Off to work.Stay later to make up some time.Can't make it all up, but having to take all this time off is seriously hurting my budget (or lack thereof).
I receive text from sis on her way to work telling me my brother in Georgia, will be moving in with her this weekend.
Don't know what happened, but then again, he hasn't really shared anything with me in a long time.
I need some friendly interaction, and I am concerned about one of my new found friends on the Alzheimer' s org chat room, so off I go.
After chatting for a while, my friend logs in and tells us her Dad passed away that morning.
Try to comfort her long distance, as we all do, and can't help thinking about our future. Another
loss to come after so many already passed. I should call my hubby's stepmother she has terminal throat cancer, and his brother to check on his Mom in her Alzheimer's unit.
While on line, phone rings. Fear strikes me! What has hubby done now?
It is Sis telling me they got sent home due to computer errors at work. Now will have to work her day off to catch up.
Finally feed cats and am ready for bed when it hits me, I was supposed to make food for a wedding potluck at work.
Oh, well another night with 4 hours of sleep........
Friday has gone pretty well so far, I goofed off a lot today.
Sister texts to ask if she can have the metal closet in my living room. Sure.
Arrive home. Tell kids to move speaker so the Closet can go to my sister. 1/2 hour of arguing over where to put it.
Tomorrow will be a busy day.
Think I will try not to think tonight............
Wednesday, June 10, 2009
Here we go again!
Today I went to see hubby at the NH. He was wandering the halls again as usual.
He didn't see me standing in the hall, but when I called to him, he knew who I was, and tried to turn around.The wrong direction, but he tried.
I put my arm around his shoulder and gave him a kiss, and he put his arm around my waist.
As we walked towards his room, his hand slid down until his hand was resting on my hip, and he asked if that was my cigarettes. I told him no, that was my behind. The CNA laughed, and we continued down the hall.
I told him I had brought him so Yoohoo (his favorite drink), and he walked down the hall with no resistance.
I got him into the room and sat him down, handing him the drink box and getting a good look at the shiner that is the remnants of his facial injury.
He tries to talk a little, words spilling out with no connection to each other, and grasps my hand.
I notice he is not falling over when he sits and seems more alert. Then his roommate informs me he has been spitting his meds at the nurses stating " Now you understand, I don't want to take them".
Funny, not one call from the NH telling me he is not taking his meds.
As I am sitting with him, the Psychiatrist who screamed at us last time he was in comes in to talk to the roommate. He hesitates at the end of the bed we are sitting on and leaves. Good!
I don't think he would win an argument with me again.
I have heard nothing from the nursing home concerning the new psychiatrist, and see no indication they have made any change to his treatment.
Upon arriving home after my visit, I find and envelope from the NH addressed to me with a note inside requesting that I "take care of this immediately".
In with the note is a form letter from Medicaid, addressed to my husband (who cannot
toilet himself, let alone read a form letter), telling him he has 10 days from the date on the form to report if someone in the household (I am assuming that would be me) has insurance thru work
that could be applied to him.
I look at the date, and the date has already passed....
I have insurance at work, but my husband has never been covered.I also know that since it is not open enrollment time, I must have a court order or significant life event (birth, death, divorce, adoption) in order to add him. I also know that pre-existing conditions are NOT covered for the first 2 years, and that the coverage I have from this Insurance company won't cover many of my BASIC needs.
I guess I will have to call tomorrow, and remind them that all communication must be done thru me, or there will not be any compliance.I will also have to go thru the long process of trying to explain my insurance situation, at which time I'm sure they will insist I try to have him added anyway.
And I am now waiting patiently for the inevitable phone call, since hubby is refusing his meds,
Stating they are having him removed again, or are sending him to the mental hospital.
It never ends..................
He didn't see me standing in the hall, but when I called to him, he knew who I was, and tried to turn around.The wrong direction, but he tried.
I put my arm around his shoulder and gave him a kiss, and he put his arm around my waist.
As we walked towards his room, his hand slid down until his hand was resting on my hip, and he asked if that was my cigarettes. I told him no, that was my behind. The CNA laughed, and we continued down the hall.
I told him I had brought him so Yoohoo (his favorite drink), and he walked down the hall with no resistance.
I got him into the room and sat him down, handing him the drink box and getting a good look at the shiner that is the remnants of his facial injury.
He tries to talk a little, words spilling out with no connection to each other, and grasps my hand.
I notice he is not falling over when he sits and seems more alert. Then his roommate informs me he has been spitting his meds at the nurses stating " Now you understand, I don't want to take them".
Funny, not one call from the NH telling me he is not taking his meds.
As I am sitting with him, the Psychiatrist who screamed at us last time he was in comes in to talk to the roommate. He hesitates at the end of the bed we are sitting on and leaves. Good!
I don't think he would win an argument with me again.
I have heard nothing from the nursing home concerning the new psychiatrist, and see no indication they have made any change to his treatment.
Upon arriving home after my visit, I find and envelope from the NH addressed to me with a note inside requesting that I "take care of this immediately".
In with the note is a form letter from Medicaid, addressed to my husband (who cannot
toilet himself, let alone read a form letter), telling him he has 10 days from the date on the form to report if someone in the household (I am assuming that would be me) has insurance thru work
that could be applied to him.
I look at the date, and the date has already passed....
I have insurance at work, but my husband has never been covered.I also know that since it is not open enrollment time, I must have a court order or significant life event (birth, death, divorce, adoption) in order to add him. I also know that pre-existing conditions are NOT covered for the first 2 years, and that the coverage I have from this Insurance company won't cover many of my BASIC needs.
I guess I will have to call tomorrow, and remind them that all communication must be done thru me, or there will not be any compliance.I will also have to go thru the long process of trying to explain my insurance situation, at which time I'm sure they will insist I try to have him added anyway.
And I am now waiting patiently for the inevitable phone call, since hubby is refusing his meds,
Stating they are having him removed again, or are sending him to the mental hospital.
It never ends..................
Monday, June 8, 2009
I raise Cain with the Nursing home
It's 8am, and my day starts with a phone call to Medicaid to tell them hubby was approved for
pre-emptive SSI.
Then a phone call to the nursing home social worker's voice mail. I said please call me about the incident with my husband on Friday, before I call someone else.
That is the fastest return phone call I have ever gotten!
Apologies all over the place for the incident and the Nurse's attitude. Now we have an eye appointment, and will have the Nursing supervisor call.
Missed the call, got a VM.Returned the call, "she's in a meeting". Right....
Called back 2 hours later and actually got her on the phone. More apologies....
Now we are going to find another psychiatrist to evaluate the meds, get him to the eye doctor, adjust his diet and address the nurse's attitude.
I nicely explained to the NS that I spent years in the medical fields before switching careers, and that I was not complaining to the nurse, just wanted them to evaluate the missed injuries.
Good for them (no liability), good for hubby, gets proper treatment, good for me, I don't worry.
I express my worry at 2 significant incidents in 2 weeks, and suddenly evryone agrees with having him reassessed.
Guess I'll have to take those "how to be a pain in the butt" classes I missed.
Now that I know what motivates them, I guess I will carry those phone numbers at all times.
And taking a picture and keeping a journal will help I'm sure.
Now let's see how the follow thru is.
pre-emptive SSI.
Then a phone call to the nursing home social worker's voice mail. I said please call me about the incident with my husband on Friday, before I call someone else.
That is the fastest return phone call I have ever gotten!
Apologies all over the place for the incident and the Nurse's attitude. Now we have an eye appointment, and will have the Nursing supervisor call.
Missed the call, got a VM.Returned the call, "she's in a meeting". Right....
Called back 2 hours later and actually got her on the phone. More apologies....
Now we are going to find another psychiatrist to evaluate the meds, get him to the eye doctor, adjust his diet and address the nurse's attitude.
I nicely explained to the NS that I spent years in the medical fields before switching careers, and that I was not complaining to the nurse, just wanted them to evaluate the missed injuries.
Good for them (no liability), good for hubby, gets proper treatment, good for me, I don't worry.
I express my worry at 2 significant incidents in 2 weeks, and suddenly evryone agrees with having him reassessed.
Guess I'll have to take those "how to be a pain in the butt" classes I missed.
Now that I know what motivates them, I guess I will carry those phone numbers at all times.
And taking a picture and keeping a journal will help I'm sure.
Now let's see how the follow thru is.
Sunday, June 7, 2009
One right after the other
June 07
I always imagined that Craig and I would always be together, but the universe has a way of throwing curve balls at you.
It has been only a few months since I had to force him into an evaluation, and learned that he has EOAD.
And advanced at that.
After a month in the mental hospital for evaluation and meds, I had to place him in a nursing home.
First it was very hard to find one that would take him. They are not set up for people this young with the severe impairment
stage he is at.Then there were the everyday calls to tell me that he just wasn't co-operating.
He was only there a few days, and assaulted a nurse and tried to escape.They had him remove by police, who took him to the local
hospital. After 2 days of not being able to find out anything and calling everyone I could think of, I went to the nursing home to talk to
the staff, and Voila! There he was wandering the halls!
Not one person thought to call me and say he had been returned.The Psychiatrist added meds to "calm him down".
Which translates to making him a zombie.When I asked to have the meds reduced, I was told it was for "everyone's good".
He has since fallen and had to have his wrist xrayed, started walking bent sideways, stopped being able to toilet himself, stopped eating, and "walked into"
a patient lift face first.
He is not showered or shaved, and his dentures were so nasty, i took them out and cleaned them myself.
I asked the social worker, pre-admission to have him examined for eyeglasses, as he had broken his a while ago....
Still waiting.
I asked her to find another facility more equipped to handle him, but only got screwed around by the other nursing home.
Surely people deserve to be treated better than this when they are already suffering so much! Since when does a disease rob you of
the right to live with dignity and care?
And since when has it been alright for the people entrusted with our most precious possessions, our loved ones, to treat them
as if they were an irritation?
I have always been an extremely polite, friendly, non-confrontational person, but this is changing me in ways that I would never have believed.
And the lack of support from former friends and family is hurtful too. Just a call to ask how he is doing would be a great support.
If you don't know what to say or do, just listen! And learning about the disease will help you to help us, as well as helping you to avoid the
heartbreak we are experiencing because we waited too long.
Until next time, become informed.And tell someone you care!
Peg
It has been only a few months since I had to force him into an evaluation, and learned that he has EOAD.
And advanced at that.
After a month in the mental hospital for evaluation and meds, I had to place him in a nursing home.
First it was very hard to find one that would take him. They are not set up for people this young with the severe impairment
stage he is at.Then there were the everyday calls to tell me that he just wasn't co-operating.
He was only there a few days, and assaulted a nurse and tried to escape.They had him remove by police, who took him to the local
hospital. After 2 days of not being able to find out anything and calling everyone I could think of, I went to the nursing home to talk to
the staff, and Voila! There he was wandering the halls!
Not one person thought to call me and say he had been returned.The Psychiatrist added meds to "calm him down".
Which translates to making him a zombie.When I asked to have the meds reduced, I was told it was for "everyone's good".
He has since fallen and had to have his wrist xrayed, started walking bent sideways, stopped being able to toilet himself, stopped eating, and "walked into"
a patient lift face first.
He is not showered or shaved, and his dentures were so nasty, i took them out and cleaned them myself.
I asked the social worker, pre-admission to have him examined for eyeglasses, as he had broken his a while ago....
Still waiting.
I asked her to find another facility more equipped to handle him, but only got screwed around by the other nursing home.
Surely people deserve to be treated better than this when they are already suffering so much! Since when does a disease rob you of
the right to live with dignity and care?
And since when has it been alright for the people entrusted with our most precious possessions, our loved ones, to treat them
as if they were an irritation?
I have always been an extremely polite, friendly, non-confrontational person, but this is changing me in ways that I would never have believed.
And the lack of support from former friends and family is hurtful too. Just a call to ask how he is doing would be a great support.
If you don't know what to say or do, just listen! And learning about the disease will help you to help us, as well as helping you to avoid the
heartbreak we are experiencing because we waited too long.
Until next time, become informed.And tell someone you care!
Peg
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