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 Drastic and Sudden Decline 
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Drastic and Sudden Decline
Hello again everyone! I haven't posted in a while for several reasons. One being my own health and recuperating from surgery for kidney cancer. The other being, just no time. Some of you may remember my situation with my father. He is 69 years old. My husband and I moved him to our home about 2 years ago. He was unable to keep track of his meds, falling, forgetful, etc. I just didn't feel like he was safe living by himself. At that time, he had not been diagnosed with Lewy yet. Once he was living with me, is was apparent something severe was occurring. After taking him to doctor after doctor and several hospital stays he was diagnosed last June. Since then it has been a giant roller coaster of ups and downs. I've had home health coming in, which consisted of a nurse checking on him weekly, physical therapy, and a monitoring system for his vitals. He was able to get around with his walking stick and at times didn't need it. Driving stopped months ago after he ran into another car changing lanes. He has suffered from extremely frightening hallucinations and nightmares. Tremors. I could go on and on but I will get to what has happened recently.

For about 2 weeks in January, Dad started staying in his room, in total darkness. TV and music were a love of his and suddenly not even the TV on. I would open his blinds. He would say shut them. I would turn on the TV. He would say turn it off. Total darkness! I was so worried and so was his nurse. Dad was also bouncing between incontinence and retention. He was becoming weaker and weaker and his balance was not good at all. So, during the night of February 1, he had two falls. Both times he was attempting to use his urinal. Dad is a very large man at 330 pounds. It took three of us to get him up. That morning I called the home health nurse and his doctor. He was unable to get up from his recliner much less stand or walk. Also, very lethargic. I new he had to go to the hospital and I wouldn't be able to get him there. I had to call 911 to take him. He just kept saying not yet. But I had no choice. In the ER they did a brain CT, chest X-ray, and tons of blood work. Everything was stable except his pulse-ox, which had been fluctuating recently. He was admitted for further evaluation. Once admitted medications were also ruled out as a reason for this sudden decline. His cognitive state was declining rapidly. Finally, I was told he would need to go to a rehab facility in hopes of him regaining enough strength to at least get to the bathroom. On February 4, we moved him to the rehab. Since being there, he is continuing to decline. He can no longer feed himself. He can barely complete a sentence because he either can't think of the words or he falls asleep. His voice has become so weak and quiet. He will just have this blank look and just stare off in the distance. He can't bath, brush his teeth, or shave. He very rarely is able to hold urinating long enough to get the urinal. Or, he doesn't go at all and needs to be catherized to empty his bladder. He is either confined to the bed or in a wheelchair. Continued hallucinations.

I spend every minute I can with him to make sure he is being cared for properly. My heart is just breaking. I've worked so hard to keep him home. Every day I go there hoping and praying this is the day he will have a turn around. He will have a bit of time in the morning that it great and I think today is the day. But then as the day goes on he declines again. I'm sorry for such a long post. I guess my question is whether anyone has seen a severe decline like this and then a turn around. And, if not, how much time might he have left? I soooo don't want to have to keep him in that place. But, at this point I'm just grasping at any hope there may be for me to care for him at home. I just don't see how. I have been a bundle of nerves and spent most of he day today crying. I feel as though I'm grieving for his loss, but he is still here!!!! Tomorrow, he has an appointment with his neurologist and I can't even get him there. I have to have him transported. I would be very thankful for any input or advice.

Hugs,
Michelle


Tue Feb 21, 2012 11:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Drastic and Sudden Decline
Hi Michelle - my dad had precipitous decines also. After the first, and most dramatic one, he recovered a few ADLs but that only lasted about a month. Does his dr. think he might be hospice-ready at this point? Perhaps a hospice eval. can be of some help. How long does he have? That can vary so much from person to person, but if hospice does accept him, that means THEY think he has up to 6 mo. Having some sort of timeline is very helpful in planning his care, etc. but frankly, it is just so damned hard to predict when the end will come. Please take care of yourself as you help your dad through this very, very difficult journey. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Feb 21, 2012 11:37 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Drastic and Sudden Decline
I'm not sure about hospice. See the doctor tomorrow. Would hospice get me enough help to bring him home? He needs 24-hour care. I also have a full time job.


Tue Feb 21, 2012 11:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Drastic and Sudden Decline
You haven't said how many hours a day he's sleeping. That would be a strong indicator of whether he's nearing the end. If he's sleeping 22+ hours a day, I'd definitely get a hospice evaluation.

I suggest you speak with the social worker at the care facility.

Is your dad capable of any sort of discussion at this point? Could you ask him a question along the lines of "Are you tired and ready to let go?"


Wed Feb 22, 2012 12:07 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Drastic and Sudden Decline
I think he would sleep all day if they didnt get him up for therapy. He even dozes off during that. The speech therapist said she doesn't understand why he sleeps so much. It's hard for me to say exactly how many hours since I'm not there at not. He falls asleep with food in his mouth. We have to wake him and tell him to swallow.


Wed Feb 22, 2012 12:35 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Drastic and Sudden Decline
And I don't think I am strong enough to ask him that question right now. Don't think I could get the words out.


Wed Feb 22, 2012 12:37 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Drastic and Sudden Decline
Then perhaps the social worker at the facility can ask him that question.

It seems that if he's still willing to be woken up for therapy and eating, he's not near death.

BTW, you'd have to decide between hospice and therapy. Medicare won't pay for both.


Wed Feb 22, 2012 1:25 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Drastic and Sudden Decline
I think hospice services can vary widely. My experience with hospice was that they came into the ALF where my dad was and provided additional assistance to the nursing and caregiving staff there. Even in his last few weeks (and it was obvious at that point that he could die at any moment) hospice nurses came in 2 or 3 times a week for maybe up to an hour each time. That would certainly not have been enough care if that's ALL the care he was getting.
At home, I don't know. You'd need to ask that of your hospice organization. If your LO is incontinent and immobile, I think you'd need a lot of help at home. My dad was a 2 - 3 person assist for every time he was gotten out of bed or put into bed, round the clock, in his last year. I can't imagine how anyone would be able to provide that amount of care at home unless you have endless funds to pay for a staff of people to be there all the time.
Making a list of questions and then talking with your area's hospice org. will help you in making informed decisions as things progress. Good luck, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Feb 22, 2012 9:06 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Drastic and Sudden Decline
No hospice provides 7x24 care, unless death is imminent (and the family wants 7x24 care, and the agency is staffed to provide it).


Wed Feb 22, 2012 1:49 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Drastic and Sudden Decline
Hi Michelle, I have been where you are now so many times. I don't know if you can remember, but I even posted that Dad was on his final journey way back last August. Like your Dad, he had had a major decline, became doubly incontinent, totally immobile and was very weak. We all have named him Lazarus, as he has declined so much several times, we really thought he was going to leave us, and then made a miraculous recovery. Medical staff, nursing staff, his priest, were all amazed at how he could decline and then recover. He is stable at the moment, but who knows with this awful disease.

I also know how your heart is breaking not being able to keep him at home, but I know I reached a point where I had to admit that I could no longer cope. It sounds to me that you are at that cross-roads now. You have to look after yourself as well - your own health has taken a beating, and the physical stresses alone of everyday caring would be too much for you, not to mention the emotonal turmoil of trying to cope. You could never manage on your own. Dad is a thin, but tall man, and it came to the stage where I could no longer change his diapers, as he couldn't help me by lifting his bottom. It broke my heart, I had to give in.

He is now in a wonderful nursing home where he is extremely well cared for, and though he is not happy there, he is comfortable and not as miserable as he was 6 months ago. Part of his settling in there I think is due to the fact that I have told him that my mother is in the same building upstairs from him. I never thought I would say this, but I am so glad I placed him - he is so much better cared for by the professionals, better than I could ever do with all the love I have for him.
I wish you all the best on this very difficult journey,
God Bless,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Feb 22, 2012 3:31 pm
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