Expert: Mary Gordon - 4/5/2009

Question
QUESTION: Mom will be 90 next month. I first noticed something wrong in March 1990 a delusional moment that progressed every 6 months.  I have learned everything on my own and with the help of alzheimers.org. Her Doctor FINALLY recognized the problem only 3 years ago because her lucid moments were frequent. I now have Mom in my home after assisted living. I have been 24/7 for 2 years and now am back to work with caregivers (private care) and finally some assistance with the council on aging (thank God)  What a difficult road this is!!!!!  Ok, my question is this.  She is in level 6 by my best guess and arrived there about 6 months ago.  No medications, physically ok, but the rest is textbook level 6.  How much longer do you think she might have?  This has been 10 years now.  (She has a strong heart)  Oh yeah, she doesnt think anything is wrong with her.  No surprise, huh?  She has trouble putting sentences together but still can speak.  Any thoughts?  thanks.....o tired one here.

ANSWER: Hi Lori, I know this is so hard on everyone who cares about her.

As you know, when they are in the final stages, they tend to lose weight, and become bedridden. They spiral down, getting thinner and weaker, sleeping all the time, and pretty much oblivious to what is around them. They reach a certain point and stop eating or drinking, lapse into a coma and pass away.

Quite often in the frail elderly, what actually carries them off are minor infections, or complications of other health issues and not the end stage of the dementia itself - although the dementia is the underlying reason they are in such poor shape overall.  So many have quite a constellation of problems, and families often opt for palliative hospice type care and allow nature to take its course. It often takes very little to tip the balance - a minor cold, winter flu, a skin infection. They just have no reserves left to fight anything.

Your mother sound like her overall health is fairly good even though she is almost 90, so there is less going on with her to make her teeter on the edge. My mother in law was not as old as your mother, but also in overall good health. She lived for over two years in stage 7 - not what anyone in your shoes wants to hear. It could be a few months - or it could be a few years.

I am very glad you have some help. The final stages are just exhausting, physically, mentally and emotionally. As she progresses further in the illness and becomes more and more helpless, and less and less aware of her surroundings, you may wish to reconsider placement in a nursing home - because there really is no way to predict how long she will survive. It will be like running a marathon up hill on rocky ground. She is unlikely to be able to communicate at all, or have any idea where she is or who is with her - and at that point, it really doesn't matter as much where she is, as long as she is getting good and compassionate care. Your real job will not be to physically care for her, but just to love her and make sure everything that can be done to keep her comfortable is being done. Hold her. Tell her stories. Look at pictures. Laugh if you can. Those are the things that are your part.

You need to be looking after yourself and not let guilt make you endure so much that you start to resent her. She wouldn't want that. So give yourself permission to consider all the options, and include yourself in the equation!! If you let yourself get worn down, no one is helped. She needs you rested and glad to see her.    

Hope this helps. Thinking of you.

Mary
Toronto

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

QUESTION: Thank you Mary. A very thoughtful and informative response.  Another question for you. I am wondering if it is hereditary?  From my memory banks..my grandmother had a stroke at age 75, home care to nursing home to sanitarium as it was called back then where her mind snapped. HER mother (me great grandmother) healthy vegetarian was 92 then she was placed in a sanitarium, although I do not know the circumstances.  Mom displayed symptoms at 80.  Am I next?  yikes!!  BTW, I decided a long time ago that I would only put Mom in a nursing home when she no longer knew who I was. Since I have 7-day wk caregivers now, a live-in will cover nights (if I can find one to exchange rent for) and I will be ok. Although a sibling tried to put Mom away immediately, I eventually had her back within my grasp and will keep her home as long as possible.  She is after all my mom, the only one I have.  I miss her terribly, but I am ok now.

With advances in medicine I know they can slow the disease and perhaps stop it in it's tracks down the road, but I am wondering if genetics play a factor with me.  Thanks again.

Answer
Hi Lori,

What a lot of people don't realize is just how delicate the brain is, and how many causes of dementia there are. Alzheimer's is just one. Lewy Body dementia is extremely common, as is multi-infarct dementia and other vascular dementias. Parkinson's causes a form of dementia, there is normal pressure hydrocephalus - and the list goes on and on.

Multi-infarct is particularly pernicious. A person can be having tiny mini-strokes and show no outward signs. They used to think that TIAs (transient ischemic attacks) were harmless, but now they know, every teeny blockage or stroke, with no symptom, or just a very transient symptom causes a bit of damage, and over time it accumulates to the point where the person starts to appear cognitively impaired.

In the past, a lot of GPs did the diagnosing and the family never got more than a dementia diagnosis (i.e. essentially saying the person was cognitively impaired, but not telling the family anything helpful about the underlying cause). The term Alzheimer's gets used pretty loosely as well - the label gets slapped on people with dementia who actually have some other cause of dementia.

To make things even more complicated, a person can have more than  one cause of dementia going on at one time. For example, it's not uncommon for a person to have Parkinson's,  Alzheimer's and a vascular cause all assaulting their brain at the same time.

If you have a first degree relative with Alzheimer's (and by that I mean REAL Alzheimer's), your odds are very slightly raised, but not by much. The research isn't super meaningful at this point, because it is often retrospective, and can include people with other kinds of dementia who were improperly diagnosed. There have been a few genes that seem to be associated with a higher risk, but no one really understands what triggers the illness. There are many people, for example, who carry the genes but who don't get the dementia. so there is a lifestyle component to it, or perhaps some exposure to environmental factors - which doesn't help any, since no one knows what the triggering factors might be exactly so they can be avoided.   

There is a really nasty sub-form of Alzheimer's that is early onset familial, that does have a very strong genetic component. It runs in families, and can hit people as early as in their 30's. It tends to rear its head in the under 65 crowd. If this was in your family, you would know about it. Sadly, this variant is 50-50 for inheritance.

If you tote up all the causes of dementia, your odds of getting one if you are lucky enough to live to 80 or over, are about 50-50 - and that is for anyone, irrespective of family history. So age alone is the #1 risk factor.

So, how to reduce your risk - well, same stuff the doctor tells all of us about our general health and few of us really take to heart. Keep your blood pressure and cholesterol under control. Eat well and get your vitamins. Get enough sleep. Keep your weight down. Exercise. Don't smoke. Avoid stress. Stay active and involved. If you develop diabetes, do everything in your power to manage it properly.

Doing these things will keep your brain in tip top shape, plus will keep you physically in good shape to up your odds of being able to enjoy those senior years. Hope this helps.

Mary G.