Expert: Mary Gordon - 12/18/2009

Question
My husband is 62, having been diagnosed with AD in 2005. At the time, he was considered 10 years (min) into the disease.Unable to work since '99, I was his caregiver until his entrance into an AD facility in 12/08.  His deterioration has progressed to severe leaning and head tilting - -has had frequent falls, still eats well, is very tired but resists sleeping, and has begun having frequent UTIs. Speech is unintelligible, but walks constantly, which I'm thinking is still a good thing.  All of his doctors are amazed he has lived this long, as early onset is usually death within 5 years.  I know his present quality of life is not what he wants as we had extensive conversations many years ago about this.  He has a living will and all assets have been transferred to me several years ago.  Is his release from this hell near? I have discovered through reading that he is in stage 7, but how long does this stage last?
Thank you! Bonnie

Answer
Hi Bonnie, I really feel for you.

He really has defied the odds, hasn't he - what a heart breaker for him to have developed dementia so young. It can be really hard to predict survival time in younger victims - mostly because their overall health can be so good, other than their dementia.

Many older dementia patients have all kinds of complicated health issues that contribute to overall frailty - so overall, they may live on for some time, but they are like an egg balanced on end - they are so fragile and they have such a constellation of problems to gang up on them that it takes very little to tip the balance and send them into a final spiral. Something as simple as a cold can do it.  

Dementia can make it very difficult to manage health concerns. It is very hard to diagnose or treat health concerns in a person who can't report symptoms or answer questions, and who can't cooperate with tests, procedures, treatments and therapies. Most families decide after a certain point that they are not going to put their loved one through any more scary or uncomfortable poking and prodding, and decide they will just keep them comfortable and as happy as possible. Medical procedures are only worthwhile if they buy the person better quality of life - and after a certain point in dementia, it just isn't worth the trauma to put a person through all that misery.  It's such an emotional paradox - and so guilt inducing - when loved ones start to pray that health complications will actually carry the person off to a merciful release.

However, your husband is still relatively young, so he likely doesn't have too many of those factors that can shorten his life expectancy. Generally, the signs that a person is going into their final six months or so include loss of ability to sit unaided (they slump over and need to be propped), ongoing weight loss, and a pattern of infections.

The weight loss becomes really pernicious. As you know, they have more and more problems with muscular coordination, and that includes chewing and swallowing. Even with very careful hand feeding of soft foods, the person will start to lose weight. It's not just a matter of it being difficult to get food into them - it's also that they really lose interest and don't seem to feel hunger or thirst.  There probably is something physiological going on as well, because feeding tubes don't really help. Part of it may just be loss of muscle mass as they move less and less. Obviously a person who is skin and bones has very little left in terms of stores to fight any opportunistic infections that may happen along.

My mother in law was much older than your poor husband but overall very healthy. She lost her ability to walk two years before she passed away. Over that time, she got weaker and weaker. She started off in a wheel chair and over time, got to the point where she had to be propped in the chair or she'd fall over. Eventually, we had to keep her in bed, propped and padded up as well - often in the last months, they can't hold their heads up.  

I wish I could tell you something more definitive, but right now, with him still walking and eating, it doesn't sound like the end is looming in the next months. I know this is horrible to be watching someone relentlessly go down hill and know they are living their nightmare. We wish we could do something, but find outselves powerless to help. It's torture. I know my husband (an only child) was just torn apart by his mother's situation - he couldn't bring her back or help her move on. My heart really goes out to you.

Hang in there. All you can do is what you are doing - looking out for him and doing what you can to make him comfortable and content.

Thinking of you.

Mary G.