Expert: Mary Gordon - 10/8/2011

Question
My mother has been diagnosed with Alzheimer about two years ago. She still recognizes most everyone. She is 87 years old. She is having black outs and stops breathing.Usually she is revived by applying a cold towel to her face neck and just by talking to her. This last time she had to be given CPR. She had made many trips to the hospital but this was the worst.Is this one of the stages? She is seeing a heart specialist and does have a slit seepage in one of her heart valves. I might also mention that she has lost the will to go on.So please let me know if this could be part of the disease or maybe the final stage.
Thank you so very much.

Answer
Hi Sondra, what you are looking at has NOTHING to do with her dementia. Blacking out and stopping breathing are not Alzheimer's symptoms. They suggest cardiac problems which you are already aware she has.

Keep in mind, that physical illness like heart issues will make her dementia appear that much worse. If you think about it, if you are feeling at all unwell and tired, even with your healthy nervous system and brain, you can feel groggy and not "with it". Now imagine those feelings layered on top of her dementia, and you can imagine her challenges. At the very best of times, when she is rested and fed, relaxed and feeling very well, she will be just holding on with her fingernails in terms being able to cope. If she is sick and exhausted as well from a faltering heart, it is many times more difficult for her.

In later AD, people get very apathetic - it's not their fault, it is related to their brain injury. She can't comprehend what is going on with her, much less what she should do about it or feel about it, or be able to imagine a future that involves getting better. Of course she is lethargic and apathetic. She's sick and confused and not capable of understanding what is happening. She's like a baby, living in the now, not able to think through anything.  

The true end stage of dementia is not pretty, but it involves the natural extension of the loss of abilities. People in end stage dementia lose their ability to talk and respond to questions, to recognize where they are, or who they are with. They can't walk at all, or move around much. They sleep all the time and are pretty much oblivious to what is going on around them. They get thinner and thinner and more and more wasted because they can't chew and swallow, and don't move around, so they lose both fat and muscle. They totally lose interest in food and drink - and this does not seem to bother them at all. They start to get opportunistic infections. They spend their days propped in bed or in a chair because they can't hold their heads up. Eventually, even with careful hand feeding and coaxing, they stop eating and drinking, lapse into a coma and pass away. It is a long, slow, brutal process for everyone involved. The only positive is that the person is not really aware of their own situation. They are past the point when they can comprehend what is happening, and can no longer have regrets about the past, distress about the present,  or fears for the future, and although they go on for some time, they don't seem to be suffering. They are like an empty shell.

So, the question for you now, and it is a serious one, is do you want to continue with all this running around, poking and prodding, tests, procedures, CPR and trips to hospital or even (God forbid) surgery? Is this in her best interest at all? Is this what she would have wanted? What would the goal of treatment be? Is longer life necessarily better life? Do you want her repeatedly revived and returned to her steadily declining quality of life to survive to the end stage of dementia? Or, is it time to call in hospice, go for palliative care and keep her entirely comfortable, free of pain,  and as happy and content as possible, and let nature take its course. You really need to be thinking about this and discussing this as a family, with honest input from her medical team and any caregivers, and religious counsel if you are part of a faith community. You have to be at peace with your decision. You can hate the disease that has taken her mind, you can hate the situation, and regret that you have to make these choices - the entire situation is crummy, and unfair and tragic, and no one deserves this - but you have to be clear minded about why you are doing anything you do from here on in, and whether it is the right choice for who she is right now. Will your choice be the best and most loving, and the one that minimizes suffering. You know her better than anyone, and you know the condition she is in now, and you also know her views from the past.  

My mother in law was robustly healthy physically, so she was not fortunate enough to have a health complication like a heart problem carry her off before the end stage - she survived almost two years in that stage. I know this sounds unkind, but we prayed for her to develop something that might spare her the misery of those last months, which were a total grinder on all of  us.  She lived on and on, and it truly was like having a corpse laid out without the closure of a funeral. My husband is an only child, and he could not bear the situation, because he knew this was her worst fear come true - to linger in the twilight for so long, unable to live and unable to die.  Quite honestly, if she had had heart difficulties, cancer or even a serious pneumonia, we would not have treated it. If she had developed a crisis, we would have only allowed comfort measures. We would not have carted her off to hospital. We would have loved her and sat by her, and made sure there was no pain, and we would have continued to do everything possible to bring whatever small pleasures or comforts we could have to her life. But we would have held her hand and let the tide go out, because heart and soul, we believed that was what she wanted and what was the most compassionate choice.

As it was, we did end up sitting by her side and holding her hand, but it was a long, soul destroying journey that she was oblivious to, but that tore those who loved her up. She did have hospice care once she would no longer take enough oral sustenance to sustain her life. I have to say, hospice was wonderful. They were so kind and compassionate, and supportive of our family . They took wonderful care of her, and I can't say enough good about the experience. When she passed, it was very gentle and peaceful, with family by her side, and we feel we did the right thing.

Below my signature I have pasted the most commonly used description of the last two stages (developed by Dr. Reisberg, and commonly referred to as the FAST tool - Functional Abilities STaging.

I am thinking of you. I know this is very frightening and difficult emotionally.

Mary


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 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