Expert: Mary Gordon - 1/9/2010

Question
My father turns 85 in March. He was diagnosed about 5 years ago with dementia (vascular/Alz or both)though he probably had it before that, but he is clearly now in the last stages.  

Although he still recognizes and is glad to see me, we cannot interact much anymore(conversationally he is having trouble with both receptive and expressive language, and his memory is nonexistent).  It is so upsetting to see him so debilitated knowing it only gets worse from here.

To make matters worse, he suffered a hip fracture last June and since then has been wheelchair bound.  He hasn't regained function/ambulation despite therapy attempts.  In addition, at the time of his fall, he essentially refused to eat for about 6 weeks and lost a great deal of weight.  We placed him on hospice care in July.  Although at some point he began eating again, he has continued to decline physically and cognitively.  He appears to be shrinking away. It is sad and difficult to watch.  

As hard as this is, it is made more difficult by worries about the future, specifically funding his ongoing institutional care at the now-highest level.  He first entered assisted living in 2006. Could you provide any insight into what to expect given his current condition -- and how long I might need to be prepared to find a way to fund his care?

Answer
Hi Katharine, I'm very sorry to have taken so long to reply - we had some family issues over the weekend.

I know you realize that it is very hard to say how long he may survive.

My mother in law lost her ability to walk suddenly due to a fall as well. She was living in the locked AD ward at the time. She stood up from a chair and without taking a single step, fell straight down onto a carpeted floor and broke her hip. Just like your father, it was repaired and just like your father, therapy was not successful in getting her walking again. She lived a full two years after that point - unable to do much of anything for herself. She completely lost intelligible speech within a few months of her fall - quite out of the blue, over a two week period, it just went. After that point, she still tried to talk, but what came out was garble and nonsense syllables, with a very occasional word or phrase that made sense.  

The AD ward wanted ambulatory patients, and because we couldn't get her walking again, she had to go to the heavy care ward, and there she stayed for the rest of her life. Her trajectory was very similar to what your father going through. It was a slide down hill. Thinner and thinner, sleeping more and more, less and less alert. Ultimately, she took in less and less food and drink until she essentially stopped, lapsed into a coma and passed away.  

If your father has other health issues to complicate his situation, his survival horizon may be shorter than my mother in laws. Other than her dementia, she was quite healthy - she had no history of heart disease, cancer, diabetes, lung problems etc. And she was five years younger than your father.

Because it is so very hard to predict, the safest thing to do is plan for his living another year or so. As you have seen for yourself, people with advancing dementia are simultaneously incredibly fragile and incredibly tough. The smallest thing - even a cold - can tip the balance into a final spiral. On the other hand, they can live on in such poor condition that it seems impossible.

Generally, the indicators that the end is within 6 months include a pattern of continuing weight loss, recurrent infections, being too weak/floppy to sit without propping (they often cannot hold their heads up and will slump over if not propped), sleeping all the time etc. It's not pretty.

If you haven't done so, you may want to consult a lawyer regarding the situation, including medicaid, and medicare and hospice care where you live. As you know, the laws are very convoluted and vary from state to state.

I know this is just gut wrenching to watch. Hang in there. I'm thinking of you.

Mary G.