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Old 11-25-2012, 11:32 AM   #1
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Unhappy Help with understanding my Grandmother's prognosis

My grandmother has Alzheimerís and is towards the end. She was recently in the hospital for an infection where the Dr. informed us she was in the end-stage, as if we were unaware. The day she went into the hospital she also lost control of her bowels and was unable to walk. She was in the hospital for three or four days. When she was released we took her home where we have hired help in during the day. She now sleeps in a hospital bed beside my grandfather. Her balance is very bad now so we have her using a walker and guiding her along the way (using the walker to allow her to feel more independent when her walking is decent enough). She is stilling losing control of her bowels and now has a very poor appetite. For the first few days she was bed/chair bound because she became tired really easy. She has gained the urge to walk back but cannot do it without assistance, and it is only the early hours that she is able to have the best balance. We believe she has had a stroke since the first day in the hospital, done a CT on the first day and no stroke, but now she will occasionally take a bite without assistance, but for the most part we have to feed her. She is unable to comprehend how to grab the fork if ask her too. It is like her vision isn't in line or she is overlooking the fork and mistaking it for something else. We have been told be lucky to be more than 6 months left, but just hoping for the New Year í13. She will be 83 in January and was first diagnosed with Dementia in 2002. For the most part of memory was shot prior to the hospitalization but besides a few accidents now and then, she was walking around on her own and eating fine. She still speaks but it isn't accurate as far as what she is talking about, unless of course it is God and then she can still give you a preaching. Has anyone been in this situation or similar, if so based on her rapid decline in just a week and a half, how long are we looking at? I realize no one can predict it and it is in Godís will, but I am supposed to study abroad for a few months, May-July, and trying to decide what to do.


Oh, we discharged her from hospital with Home Health, PT, and CNA. Dr mentioned hospice, but as of right now we haven't enrolled in them. We do have to go to her Primary Dr asap to continue the home health.

 
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Old 11-25-2012, 12:41 PM   #2
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Re: Help with understanding my Grandmother's prognosis

If she is really in end stage, I would suggest that hospice is good for her. Hospice doesn't mean she will be dead soon or anything. It is comfort care only and she may get out of hospice in 6 months and etc. No one can tell you exactly when it will come. Usually if she survives 6 months in hospice, you can renew the hospice again. Hospice is meant for comfort care. My late FIL had Alzheimer's and he lived to the very last stage of AD. In the end, it was the eating that caused his weakness and heart attack given heart failure. Out of all the symptoms for AD (Alzheimer's disease), I will say the eating is crucial. In end stage, the patient stops walking/talking and needs to be fed. My late FIL had not got into hospice yet before he died (we were about to consider hospice.)
Some kind of palliative care is important. Feeding her and making her comfortable and etc. It could be 6 months or 1 year... Eating issue is complex. My late FIL took 3 years to go through this eating issues. First he could not use forks and then he could not tell what food is and forgot to take food in the kitchen - this took a year or two to go through. Last year he had pureed food to prevent his swallowing problem. This April this year he needed to be fed. When he could not digest and take any more food, he became weak. The nurse director told us the eating issue was part of the reason that he died (he needed oxygen the last week.) My late FIL could not talk anymor except for some "Ah" and he was mostly bedridden. He could not walk and needed help to put him to bed - literally moved his head down to the pillow and moved his legs downward for sleeping...
It took him a year when he stopped walking before he died. He first needed the walker last year in May and then he needed the wheelchair totally in Oct. last year. Overall, he had lingered around for a year or so after he stopped walking with his cane.
He died in July this year.
Many times we were told he may die by the home care nurse but he died suddenly much later.
Your grandma doesn't sound very very severe but it is in severe stage. My late FIL had all these things that she has now. He was incontinent and had adult diapers. At this point, you have to go through it one day at a time. She can be given pureed food and etc. Lots of things should be done for her before you give up. Hospice can be very good for her. We never sent my late FIL to the hospital in the last 2 years in the NH (2 ERs only.) Hospital is not friendly to dementia people. So you may need to consider home care since she hates the tubse and etc. If she has other health issues, then things will get complicated and worse.
Usually for Alzheimer's the hospice starts for eating problem - when she cannot eat anything without help. Not knowing how to use a fork is not that bad. But she will decline later on.

Take care,
Nina

Last edited by ninamarc; 11-25-2012 at 01:09 PM.

 
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Old 11-25-2012, 01:00 PM   #3
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Re: Help with understanding my Grandmother's prognosis

We definitely have the medical side of things situated for her. Between Pharmacists and RN's in the family we have 24/7 care set-up to keep her from being placed in a nursing home. When you try to get her to eat she claims she is full. She definitely is severe, but she is not as severe as some patients become, which I am thankful for. They were not optimistic on her prognosis based solely on the factors at hand, but as stated above no one can predict Alzheimer's due to the number of factors that affect it. She weighs around 125 with shoes on, which is down. She is also using depends. Thanks for the reply. It feels comforting to discuss with other people who have been in the same situation, although each one is different, it is nice to have at least scenarios to refer back too.

 
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Old 11-25-2012, 05:36 PM   #4
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Re: Help with understanding my Grandmother's prognosis

Jsetht, what you have described is typical of Alzheimer's patients. Any medical condition, especially those that require hospitalization, will cause a sudden decline in their cognitive abilities. Everything you described is a symptom of cognitive decline. Alzheimer's is not just a memory problem but brain damage that affects everything. Every thing we do is control by our brain and each function is eventually affected by the damage that Alzheimer's does to the brain.

Mom had a UTI in June. She was walking on Friday morning. She started leaning to one side and slowing down during the day. Saturday morning she walked tentatively to the bathroom door. From that point forward she has been in a wheel chair. The UTI literally knocked her off her feet! The effect of the infection caused her brain to lose the ability to tell her legs how to walk. We have been though another such journey in the last eek. In just a few days she lost the ability to eat anything but puree foods. She forgot how to use utensils over a year ago and has been fed since. She would eat finger foods herself but eventually lost the ability to do that. A emotional break down and UTI took her ability to communicate effectively almost 4 years ago. Amazingly, she will still hold her urine and bowl movements if she is physically put on the toilet frequently. There was a time she ate non stop and never seemed to be full. Even during that time she began to lose weight. That is an indication that the digestive system is not functioning properly. She is not getting the necessary nutrition and calories out of the food to maintain her body weight. At this point she eats very little. Her weight 4 years ago was 130 pounds. She has lost 11 pounds in the last 2 months and is now down to 91 pounds. Yet when I saw her today, she was sitting up and smiling at me I too think my Mom has had a TIA. This differs from a stroke in that the symptoms don't last for a short time and they do not show up on CT scans. But in a few hours to a couple of days she is back to her old normal. Basically, she is not in a wheel chair and depending on the staff for everything. Yet her heath is relatively good. I have no idea how much longer our journey will be.

As you say, each is different but eventually they all lose their abilities. The order may be different but in the end, they all go. I am glad you were able to bring Mom home with help. Just be sure to have plenty of help and not over tax anybody. The care givers have to take care of themselves.

A word about Hospice. There is still a bit of a stigma attached to Hospice. It is thought of as an end of life organization. In fact they are for much more than that. My Mom has been on Hospice for almost a year and a half. Every 6 months she is reevaluated and re-certified I can not say enough about their services. Mom has an assigned nurse that visits with her once a week or as needed. As her conditions deteriorates that will increase to one a week or once a day as needed. She has a CNA that comes in once a week to shower her and wash her hair. She also has a volunteer that comes for a couple of hours a week just to be with her. Beyond there there is a social worker assigned to her case that visits with her once a week and then gives me a phone call to find out how I am doing. If I need anything on the weekends or at night, I just have to call the main triage and I get a nurse quickly. Beyond all of that, the doctor comes to visit Mom. No more taking her out to the doctor. The doctor is always on call and in constant contact with the RN. They also pay for most of her medication, incontinent supplies, medical supplies such as hospital beds and wheel chairs, and a list of other items. ..... and it is all covered by Medicare!!

If you make the decision that you do not want Mom back in the hospital for aggressive treatments, and you are comfortable with your Mom receiving comfort care at home... then you really do need to get a Hospice consult from your doctor. Hospice evaluations here are done within a few days and you will get your acceptance immediately there after. The process with Mom took three days and her nurse visited on the fourth day. So give that some consideration.

Love, deb

 
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