Expert: Mary Gordon - 9/1/2011

Question
QUESTION: Hi my MIL is in stage 6, I was wanting to know the length of time it takes from stage 6 to the end of her life if that is possible to know .

ANSWER: Hi Evelyn, it's extremely difficult to say how long a person will survive. As you can appreciate, the overall health and age of the person has a lot to do with it. After all, if the person is very frail and elderly, with a constellation of difficult health complications, they will survive a much shorter time than a younger person in very robust health.

For example, my mother in law was about 76 when she hit Stage 6, and survived another 4 years - about 2 years in Stage 6, and a little less in Stage 7, passing away just before her  f.  However, she was extremely healthy. She had no chronic heart, lung, kidney problems to shorter her days, nor did she have any history of diabetes, cancer, etc. She trudged on to the natural end of her dementia.

Most people will be carried off by other health issues prior to that point. It is not just due to overall frailty. As people pass into later dementia, they can't answer questions. They can't describe symptoms. They may not show signs of pain or other discomfort. They may not even feel physical symptoms the way a healthy person might. A caregiver is left to try and observe behavioral changes or external signs to guess if there are new health issues. Quite often, health concerns are not diagnosed promptly as a consequence.

Equally, a family may decide that since the person's quality of life and life span itself is limited due to their dementia (in itself a terminal illness), that there is no point to put the person through frightening or uncomfortable tests, procedures or treatments. They may decide to put the emphasis on quality of life, rather than quantity - not to drag the person to hospital, not to feed or hydrate with tubes if the person is not eating or drinking well, not to keep on with drugs with unfortunate side effects, therapies that pester, surgeries, etc,  etc. After all, as the dementia progresses, the person can't understand the purpose of medical care, much less cooperate with it. Most medical care does involve a degree of suffering, whether emotional or physical, and you and I cooperate because we understand the aim and the point - i.e. we know we may recover and go on to additional years of happy, involved living, which is not true for many dementia patients.

We knew my mother in law's wishes, and as she moved into later dementia, we opted for palliative care only with the full support of all of the family and her care team. We wanted her kept free of pain, and serene and comfortable and happy as humanly possible, despite her very restricted quality of life. We would only have treated the kind of medical issues that would have made her uncomfortable. Had she developed anything serious, we would have only treated pain. We had a "do not rescusitate" order on her per her wishes.

These are very hard things to talk about for many families, but it is important to start the dialogue about how you all will handle things going forward. Unfortunately, if you treat all her medical issues aggressively and allow tubes, they may well be able to keep her body going long after there is a compassionate reason to do so. However, some families really struggle with this due to a fear of death. If they are not ready to say goodbye they may wish everything possible to be done for the person. Only you and yours can have the discussion about what is right for your mother in law and the rest of you based on her wishes, her condition, quality of life, your religious and other beliefs etc.

Hang in there, there are tough days ahead - but it may be as much as several years to the end. I know this is likely not what you want to hear. They can also plateau and live on in the twilight.

They can be as tough as steel and as fragile as glass. They live through things you can't imagine they can survive, and yet something small, like a cold or other minor infection, can be enough to start a final spiral. My mother in law lived through TWO broken hips during her final years. When they die from the natural end of AD, they get frailer and frailer, thinner and thinner. They eat and drink less and less, sleep more and more and get weaker and weaker. They no longer move much or react much to what is around them, including people, spending their days propped up in a bed or chair. Finally, they lapse into a coma and drift away. It doesn't seem to be painful or distressing to them at all, which is merciful. However, it is very hard on the family, and as odd as it may sound, we prayed for something else to mercifully carry off before the long, brutal process took its course because we knew she would not have gone on in that condition.

Hope this helps

Mary
Toronto


---------- FOLLOW-UP ----------

QUESTION: hi Mary , thank you for your answer, another question I am puzzled about is the specialist has my MIL on a drug that will slow down the ALZ , this drug seems to be making her worse and very tired . why oh why would they want to slow this decease down when her quality of life isn't good . she can still shower , brush her teeth , and all the rest I have to prompt her to do or it doesn't get done . It might sound selfish but this is so hard on her as well as us and I wish a quick ending for her as this is no life for her.So do the Doc's think she will have a better life on these drugs ?

Answer
Hi Evelyn, I know this is very hard. I very much suspect that the drug that you don't think is doing anything is helping to preserve function more than you realize. Quite often, if the medication is discontinued, the decline is really shocking - but that does not mean the person will necessary die any sooner. They may just instead live on like a empty shell for longer, causing suffering for everyone, including the family, who may not be able to care for the person at home.

If she can still walk, talk, shower and do things with prompting, this is so much better than what is to come - she still can participate in life and enjoy some things, so yes, believe it or not, she does have quality of life left to preserve. I know it is hard to look ahead into the future and get your head around what is to come. With AD, you wonder how much worse can it get, and then, you find out. Right now is still pretty good, although you may not see it that way.

My mother in law got her AD before the present generations of helpful medications came along. She was diagnosed at 73 or so and died just before her 80th birthday, and as I mentioned, she was very healthy. Were it not for her AD, I have no doubt she might have lived into her 90s. First three years were not too bad as we could look after her in a home environment with hired assistance and supports. Last four years were a marathon nightmare requiring expensive institutional care.

She lost her ability to walk in Stage 6 from a fall. At that point, she became incontinent because she couldn't walk. She was in wheelchairs for the rest of her life. She lost her ability to talk around the same time quite suddenly, and this included understanding what was said to her. And she lived on. Totally physically unable to do for herself. Unable to perform the most simple hygiene for herself. She needed special hoists and bathing facilities and a hospital bed with a special mattress. She had to be dressed and diapered and washed like a 130 pound baby and repositioned every hour or so to prevent bedsores. She had to be hand fed, a very slow and time consuming process. She lost her ability to chew and swallow properly, requiring purees and thickened liquids. Never mind the cognitive impairment and behavioral issues that went with her decline, her total physical disability meant she needed heavy care 24/7, and I could no more have looked after her at home than flown to the moon by flapping my arms.

All of this is probably ahead for your mother in law and anything that will help put off the evil day is a good thing. The day WILL come when she can't do many things at all even with prompting or assistance, and you will say, enough with the medications because there really is no point.

I am so very sorry you are going through this. It is painful and difficult beyond belief. Look after yourself.

Mary