Alzheimer`s Disease/end stages Alzheimers

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Question
My father is in a High Functioning Alzheimers Unit, Stage 6.  When there are repeated episodes of fecal incontinence, he is no longer welcome in this unit.  I may bring him home then.  Will he be able to walk at this stage, speak at this stage?  OR will he be silent and immobile? OR does it vary ?

Many thanks to you

Answer
Hi Diane, not everyone progresses through various losses in exactly the same pattern or rate, but there is a general trend. Below I have pasted the most commonly used set of descriptions for the last two phases based on functional abilities. Usually people deteriorate slowly and gradually, with abilities lost in a particular order.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

You may want to consider all your options once he is no longer continent so you have contingency plans other than looking after him at home (in case this does not work out). Because he will be so mentally and physically impaired, it can be a massive challenge to look after someone at that stage in a home environment. Communication with him will be more and more challenging, and his mobility will be going down hill very quickly, so every aspect of physical care becomes a struggle, particularly if he is relatively heavy and requires strength to deal with. He will not be able to follow directions or cooperate with changes of clothing, diapering, bathing, or other hygiene etc.

My mother in law survived a full two years after she became incontinent and lost her ability to walk. She also lost all intelligible speech around the same time (it happened very rapidly, literally over a period of about two weeks). She was very confused. She did not appear to know where she was or who she was with. She couldn't answer questions or assist with what became very, very heavy care (like looking after a 130 pound infant). She couldn't even stand up on request. Keeping her clean and fed was a very demanding routine, and she was in a dementia facility that had graduated care - when she couldn't walk, she moved from a locked ward for ambulatory patients, to a heavy care "nursing" floor.

She really didn't engage with other people or participate in activities - most of her time was spent in a wheelchair staring vacantly or dozing. Eventually, when she could no longer even sit, she spent her days propped up in bed. She had to be repositioned frequently to prevent pressure sores. She also could not feed herself, so had to be carefully and frequently hand fed which was very time consuming. Essentially, it was 24/7 duty of a relentless nature, including supervision all the time. She couldn't be left alone at all in case she fell over etc.

The nursing floor staff were lovely. I honestly couldn't have coped with her at home, without a lot of round the clock help and a lot of equipment (i.e. lifts, hospital beds, adapted showers, wheelchairs etc.). It also was very disheartening because she was no longer herself, but more and more an empty shell. There were few flashes of love or happiness. Looking after her was thankless in that she was no longer able to be glad of anything or in any way aware or appreciative for the loving care she was getting.

I don't say these things to be depressing - just to give you some idea of how difficult a task this could be. It sounds kind and personal to look after him yourself, but it could be much harder than you bargain for, in terms of emotions, the amount of time it takes up, and the very real yu physical challenges.

So, even if you are still sure you wish to try, I would advise you to do your research. Go and look at local facilities that can handle him, so you know what is available to you. Find out if there are agencies who offer home care who might be able to assist with his care at home. Find out about medical supply rentals, so if you need special equipment, you know where to obtain it - for example, should you need a special lift to move him from chair to bed.  

I'm thinking of you. I know this is very difficult to witness. He is lucky to have his family concerned about him.

Alzheimer`s Disease

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Mary Gordon

Expertise

Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience

Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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