It has been many months since I last posted, and much has happened. We moved from PA to Ohio, where our boys were raised, I went thru a period of deep depression, where I was out of work before hand. The psychiatrist told me I had to start thinking about taking care of me, and think about what would happen when this journey ended.
This prompted the move, along with a change back to the job I had for 17 years. God was watching over us, as I was able to find a job thru an old co-worker, for which I am very grateful.
We moved Craig soon after we moved, and at that time Hospice discharged him saying he had stabilized his weight loss and had not had a seizure in months. Everything seemed to be going along smoothly, when Craig started to refuse meds and food.
I bought special food and beverages, hoping to get him back on track, but each day it became more apparent he had decided to refuse. Hospice was called in, and after much discussion, it was decided not to give IV fluids, or a feeding tube.
I informed his brother, who had not spoken to us in many years, and after a very disagreeable conversation, he made a short trip to see Craig.I truly believe he only did it so he wouldn't look bad.
Arguments aside, the boys and I agreed that if Craig did not want to eat or drink, we would honor his choice unselfishly.
Craig lasted 3 weeks in this state before he passed, and I can tell you that it was the hardest thing I have ever done to watch him seize over and over, to stay with him constantly,knowing I could do nothing.
I spent the last few days with him trying to cool his fever, asking the nurses for his next dose of morphine, at times holding his hand and stroking his head, at times crawling in with him to hold him in my arms.
The time since his passing has been hard too.Paperwork, funerals, lost wages, informing his stepmother, answering condolences, and awaiting his ashes.
Now I am trying to figure out how I move forward after so many years of my world centering around taking care of him. And how do I help the boys to get on with the lives they have deferred to help with their Dad.
Father's day was 2 weeks after Craig's passing, and it was hard, but his birthday is July 6th, and since I have
not yet gotten past the numbness of his passing, I am sure it will trigger a flood of emotion.
Perhaps a memorial on his birthday, which I could not do when he passed due to funding issues will help me to finally mourn like I have been unable to do yet. I'm not sure if I am broken, but I haven't really cried much, except when people ask about his passing. And I have tried not to talk about it. I am afraid I will lose all control and melt into a puddle from which I will not be able to recover.
All I know is, I am trying to remember him as the love of my life, not the shell I sat with as he fought for life.
And I really need a hug......
Sunday, June 27, 2010
Monday, March 15, 2010
Can't believe it!
I thought after the observation of last weeks events, something would be done. Went to the NH over the weekend, and was told they added twice daily doses of tylenol. No other orders.
Told the nurse I wanted to talk to the doctor. Also told her that the symptoms I described to my online doctor friend indicated he may have tardiv dyskenesia. Now nurse is telling me can't be that.
Went to the NH this morning and spoke to the NH admin, who also called down head of nursing. Explained about the incident and the floor nurse who lied about meds. Told them I was concerned not only about Craig , but others whose meds were life sustaining. I was told they would review the chart, check the med records and get back to me.
Craig seems to be more relaxed, and is snoring while sleeping now. But also seems to be having trouble with swallowing his spit and coughing again. Pale and cold. Unable to wake him in the 2 hours I was there.
Time to speak to the doc again.
Told the nurse I wanted to talk to the doctor. Also told her that the symptoms I described to my online doctor friend indicated he may have tardiv dyskenesia. Now nurse is telling me can't be that.
Went to the NH this morning and spoke to the NH admin, who also called down head of nursing. Explained about the incident and the floor nurse who lied about meds. Told them I was concerned not only about Craig , but others whose meds were life sustaining. I was told they would review the chart, check the med records and get back to me.
Craig seems to be more relaxed, and is snoring while sleeping now. But also seems to be having trouble with swallowing his spit and coughing again. Pale and cold. Unable to wake him in the 2 hours I was there.
Time to speak to the doc again.
Friday, March 12, 2010
Eventful day
I will try to post more often since I seem to have acquired a few followers.
I started oput the day yesterday with my trip to the psychiatrist. I bemoaned my lack of friendships, and he told me that I needed to tell people up front what I expected from a relationship. I always thought that friends did for each other without being tols or asked, but guess I was misinformed.
Went at lunch time to the NH, spent some time with Craig and then attended the care plan meeting. I asked for weekly updates from Hospice, and once again complained about the incidents where Craig seemed to be either having a seizure or in pain. Apparently nothing in the chart despite my repeated requests to have it checked out.
Down the hall to see Craig again, and after being with him few only a few minutes he starts to get aggitated, and begins the all too familiar epsiode. This time it is so intense, a nurse runs around the corner to see what the noise is, and I pull the nursing supervisor out of her office. he is shaking uncontrollably, arching his back, hyperventilalting, eyes are bulging out and grimacing. NOW he has everyones attention! they take his vitals, BP is at 72 over 60 and someone finds the PA for our doc in the next wing.
Now comes the really cute part: the NS asks about what medds and what schwedule he is on. The charge nurse tells her he is on Depakote 2x day at 8am and 8pm. I ask what the med was she gave on the way out of the lunch room. She says did not give him a med. I say then what was that you stopped me to give him. She says Magic cup. I say no the stuff n the med cup mixed with applesauce. She admits it was his Depakote.
When NS asks why he was getting at 1pm she says she was busy and had just gortten around to it!
So the doctor is now looking into changing meds.And now everyone knows what I have been compalining about for weeks. They can no longer think it is just my overactive imagination. I feel better that now they will do something about the pain he has been dealing with.
I know that he is not is such great shape, but there is never a reason to suffer because someone just won't listen.
Waiting to hear from Doc. Will let you know what happens .
I started oput the day yesterday with my trip to the psychiatrist. I bemoaned my lack of friendships, and he told me that I needed to tell people up front what I expected from a relationship. I always thought that friends did for each other without being tols or asked, but guess I was misinformed.
Went at lunch time to the NH, spent some time with Craig and then attended the care plan meeting. I asked for weekly updates from Hospice, and once again complained about the incidents where Craig seemed to be either having a seizure or in pain. Apparently nothing in the chart despite my repeated requests to have it checked out.
Down the hall to see Craig again, and after being with him few only a few minutes he starts to get aggitated, and begins the all too familiar epsiode. This time it is so intense, a nurse runs around the corner to see what the noise is, and I pull the nursing supervisor out of her office. he is shaking uncontrollably, arching his back, hyperventilalting, eyes are bulging out and grimacing. NOW he has everyones attention! they take his vitals, BP is at 72 over 60 and someone finds the PA for our doc in the next wing.
Now comes the really cute part: the NS asks about what medds and what schwedule he is on. The charge nurse tells her he is on Depakote 2x day at 8am and 8pm. I ask what the med was she gave on the way out of the lunch room. She says did not give him a med. I say then what was that you stopped me to give him. She says Magic cup. I say no the stuff n the med cup mixed with applesauce. She admits it was his Depakote.
When NS asks why he was getting at 1pm she says she was busy and had just gortten around to it!
So the doctor is now looking into changing meds.And now everyone knows what I have been compalining about for weeks. They can no longer think it is just my overactive imagination. I feel better that now they will do something about the pain he has been dealing with.
I know that he is not is such great shape, but there is never a reason to suffer because someone just won't listen.
Waiting to hear from Doc. Will let you know what happens .
Monday, March 8, 2010
The fight for me
No matter how hard I try, I just can't seem to get a break! Went to the doctor and had blood work and the yearly done.All seemed to be smoothing out.
Enter the suicide threats! Niece tries to hang herself, several girls on the website threatening, spent days trying to talk to them , only to have them tell the others that I was being mean to them! Telling them they needed to call 911 or check themselves into a mental health clinic is being mean? Been there , done that!
Still no communication from my brother in law, Craig having more seizures, 5 days of plugged up toilet... too much at once!
Called and applied for Short term disability and FMLA. Just want to get my shit together and get some help.
Doc calls and asks about STD papers, go to office to talk to her, have a total meltdown.Try to explain that I'm so out of it, don't clean, don't balance checkbook, don't leave the house.Even doctor is hugging me trying to calm me down.
Get text from boss asking when I'm coming back to work at 11 pm. Told her I emailed, and she should check with HR.Woke up by phone the next morning, panic attack! The phone never rings unless somethings wrong with Craig. Answering machine comes on , yelling into phone to hold on, twist ankle getting to answering machine, only to find out it is STD people asking "If your husband has been sick all this time, why are you depressed now?"
When was the last time you had to watch you husband die slowly? When was the last time you cried until you threw up? When was the last time you had to deal with a sister out of her mind because we had to kick in her daughter's door and cut her down? When was the last time you felt like you had no one to hug you, or talk to you, have dinner with?When was the last time you had to try to balance a 45 dollar 2 week paycheck against
taking care of your husband? When was the last time you shopped for baby food to try to get your husband to eat after 4 days with no food or drinking, only to have him gag trying to swallow and have a seizure?
I can feel myself swirling around that pit waitjng for the suction to pull me in! God I hope this psychiatrist call pull me out of this funk. Doubling the meds has helped some, but they are for the depression, what about the
stress? And how am I going to keep paying for these doctor visits and meds? What a catch 22...
Even the chatroom on the ALZ site is starting to depress me.So many self centered why me people. STFU and step up! It's ok to share, vent, ask for help, but don't sit there telling me what a wonderful person you are for putting up with Grandma/Mom/Dad/Grandpa.Then tell me in the next breath you are not going to get them treated for a serious health problem, or how you are planning your next vacation to Paris.
Guess I've vented enough for one day. If Craig wasn't in such bad shape, I'd chuck it all and move back to Ohio.At least someone there would call if they hadn't heard from me in 3 weeks...
Enter the suicide threats! Niece tries to hang herself, several girls on the website threatening, spent days trying to talk to them , only to have them tell the others that I was being mean to them! Telling them they needed to call 911 or check themselves into a mental health clinic is being mean? Been there , done that!
Still no communication from my brother in law, Craig having more seizures, 5 days of plugged up toilet... too much at once!
Called and applied for Short term disability and FMLA. Just want to get my shit together and get some help.
Doc calls and asks about STD papers, go to office to talk to her, have a total meltdown.Try to explain that I'm so out of it, don't clean, don't balance checkbook, don't leave the house.Even doctor is hugging me trying to calm me down.
Get text from boss asking when I'm coming back to work at 11 pm. Told her I emailed, and she should check with HR.Woke up by phone the next morning, panic attack! The phone never rings unless somethings wrong with Craig. Answering machine comes on , yelling into phone to hold on, twist ankle getting to answering machine, only to find out it is STD people asking "If your husband has been sick all this time, why are you depressed now?"
When was the last time you had to watch you husband die slowly? When was the last time you cried until you threw up? When was the last time you had to deal with a sister out of her mind because we had to kick in her daughter's door and cut her down? When was the last time you felt like you had no one to hug you, or talk to you, have dinner with?When was the last time you had to try to balance a 45 dollar 2 week paycheck against
taking care of your husband? When was the last time you shopped for baby food to try to get your husband to eat after 4 days with no food or drinking, only to have him gag trying to swallow and have a seizure?
I can feel myself swirling around that pit waitjng for the suction to pull me in! God I hope this psychiatrist call pull me out of this funk. Doubling the meds has helped some, but they are for the depression, what about the
stress? And how am I going to keep paying for these doctor visits and meds? What a catch 22...
Even the chatroom on the ALZ site is starting to depress me.So many self centered why me people. STFU and step up! It's ok to share, vent, ask for help, but don't sit there telling me what a wonderful person you are for putting up with Grandma/Mom/Dad/Grandpa.Then tell me in the next breath you are not going to get them treated for a serious health problem, or how you are planning your next vacation to Paris.
Guess I've vented enough for one day. If Craig wasn't in such bad shape, I'd chuck it all and move back to Ohio.At least someone there would call if they hadn't heard from me in 3 weeks...
Tuesday, February 23, 2010
Just have to vent
Wow! What a long time it has taken me to get back to this!
Aside from the obvious deterioration on hubby's part, I am now dealing with the toll it has taken on me. Between the stress of work, Craig, home and family, I am at the breaking point. I no longer keep my house or my self in any kind of presentable shape. I can't go to sleep, have panic attacks, cry all the time and can't breathe half the time. Sometimes it feels like a boa constrictor is squeezing the air out of me. I have no attention span, and find myself floating off when driving. Scares the crap right out of you! I, the spelling and language queen, find myself fighting for common words. Sometimes I'm afraid I'm getting it too. Wouldn't that be ironic? Who would fight for me the way I've fought for him?
Craig's mother passed away a few weeks ago, and his brother, who waited until the last days to tell us, curtly informed me of her passing, but has made no contact since, despite repeated attempts on my part. Guess we are no longer part of his life. Whatever.
Speaking of which, after a few Web searches, I found out that the story he told about stopping on the way to Arlington for his Uncle's funeral was bullshit. The man was buried in Erie.
Craig is back to the depakote along with a small dose of zyprexa now, is still seizing, having trouble swallowing and now breathing is difficult. I have told them several times he is in pain of some kind, but nothing has been done to try to figure out what the cause is. I will have to address this with the Hospice I guess.
Funeral plans have been completed, again, all alone.Everything is done all alone now days. Even the few people who used to keep in contact have drifted away.
Thank God for the people on the Alzheimers websites. They are the only support I have now.
I miss my life, I miss my sanity, but most of all I miss Craig. He is already gone....
Aside from the obvious deterioration on hubby's part, I am now dealing with the toll it has taken on me. Between the stress of work, Craig, home and family, I am at the breaking point. I no longer keep my house or my self in any kind of presentable shape. I can't go to sleep, have panic attacks, cry all the time and can't breathe half the time. Sometimes it feels like a boa constrictor is squeezing the air out of me. I have no attention span, and find myself floating off when driving. Scares the crap right out of you! I, the spelling and language queen, find myself fighting for common words. Sometimes I'm afraid I'm getting it too. Wouldn't that be ironic? Who would fight for me the way I've fought for him?
Craig's mother passed away a few weeks ago, and his brother, who waited until the last days to tell us, curtly informed me of her passing, but has made no contact since, despite repeated attempts on my part. Guess we are no longer part of his life. Whatever.
Speaking of which, after a few Web searches, I found out that the story he told about stopping on the way to Arlington for his Uncle's funeral was bullshit. The man was buried in Erie.
Craig is back to the depakote along with a small dose of zyprexa now, is still seizing, having trouble swallowing and now breathing is difficult. I have told them several times he is in pain of some kind, but nothing has been done to try to figure out what the cause is. I will have to address this with the Hospice I guess.
Funeral plans have been completed, again, all alone.Everything is done all alone now days. Even the few people who used to keep in contact have drifted away.
Thank God for the people on the Alzheimers websites. They are the only support I have now.
I miss my life, I miss my sanity, but most of all I miss Craig. He is already gone....
Monday, November 2, 2009
Tornadoes have nothing on this
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.
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.
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....
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