Expert: Mary Gordon - 11/12/2010

Question
From what I see and read my wife has now been in stage 6 Alzheimer's for at least the past 4 months.  She is 62 and was diagnosed 6 years ago at age 56.  She has no other health issues.  She is most times pleasant except for the times I don't get her to the right 'place' to buy the right 'thing' then I am the scum of the earth because I can't read her mind.  I thought 6 years ago she would last 12 years but she went from stage 3 to six in six years.  So what is your opinion as to how long she'll be in stage 6.  I can't retire until I am 62 in a year and a half but if time is that short maybe I should re-think my plans?

Answer
Hi Ed, my heart really goes out to you. I know this not what either of you had envisioned, and it's so unfair. No one deserves this.

It's very hard to know how long she will survive. Because she is relatively young and in good overall health, it's likely she will live several more years.

My mother in law was in her late 70's when she went into stage 7, so much older and frailer than your wife, and even she survived a full two years not able to walk, talk or do anything for herself. She was in a wheelchair or propped in bed, incontinent, being spoonfed purrees, not really knowing where she was or who she was with. It really is astonishing how long they can survive in really pitiful condition, particularly when they have no underlying health concerns to carry them off before the natural end of their dementia.

If I were you, I would keep working as long as you are able, especially if you are able to manage her care while working (i.e. have adult daycare or in home "sitters", friends or family pitching in etc. so she is not alone in the home at any time). You know this is a relentless slide down hill, but she is very likely to hit Stage 7 and live on for some time. She is likely to need heavy physical care, which many families find too much for a home environment.

Signs that a person is in their final months can include weakness to the point they can't hold their heads up (i.e. they must be propped up in their chair or bed, or they will slump over), eating less and less and losing more and more weight no matter what strategy is tried, repeated infections, sleeping more and more and being less and less aware of their surroundings.  it can be very slow and brutal.

You really need to be looking after yourself in all of this. To keep your health and sanity, put yourself near the top of the list - if you become worn out or ill, no one benefits. You also need to look after your future financial protection. I hope you have consulted with a good estate lawyer to make sure your interests are protected, as your wife is likely to need costly supports, and you will likely survive her, and will need funds for your own security into what I hope are many years to come. Do whatever you can to maximize your own financial security, including working as long as you can contribute to a pension fund.

Pace yourself. This disease is not a sprint, but a marathon - up hill through the boulders and prickle bushes. It is not like other illnesses where the person is themselves until close to the end, and you can take a relatively short time off and have them know you are with them to the end. Sadly, what so often happens with the dementias, is the person is gone in every way that matters long before their body dies. It can go on for years - which is not what anyone wants to hear. It's like having a corpse laid out indefinitely without the closure of a funeral. Expect to do most of your grieving long before her body gives out.  

I wish I could give you a better idea of what to expect or the time frame, but its impossible to know. Assume worst case - that this will go on for years.

I wish you peace. Make time for yourself. Be good to yourself. Take breaks and get away. Your story goes on in a way that hers cannot.

She's lucky to have such a caring husband.

Mary