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.
Wednesday, September 30, 2009
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.
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