Expert: Mary Gordon - 9/17/2009

Question
Dear Mary,

My beloved mother is in the final stage of AD.  She is 78 years old.  She has had the disease for almost 7 years.  She seemed to be in Stage 6 for many months until, in July of this year, suffered a mild heart attack.  One week later she was re-admitted to the hospital for a UTI and mild pneumonia.  Her decline since these events has been shocking.  She currently has complete incontinence, no language, cannot walk without assistance, sleeps deeply in a reclined lift chair most of the day and, most recently, is having trouble swallowing (holds food in her mouth).  Why such a rapid decline after the illnesses?

She is at home with my father, 80 years old, frail himself due to arthritis and heart issues.  He has 2 caregivers for mom;  one during the day and another for a few hours at night to get mom in bed.  They have been a godsend as they keep her clean and fed.  She really has no interest in food and often falls asleep at the table.  Her doctor recommended hospice once the eating became an issue a few weeks ago.  We agreed.  She is comfortable.  Most of her days are spent sleeping, walking (assisted) to the table, to be fed pureed food, back to the chair, table, then to bed.  We have a hospital bed in the dining room since she forgot how to climb stairs after her illnesses.  Once in awhile we'll get a smile from her.  And once in awhile she will sit, somewhat alert, at the kitchen table after meals.

This has been heartbreaking for myself, my sisters and my father.  Sometimes we think a good facility would be a better choice at this time.  My father lives this every moment of every day and is miserable.  He demands that she be home.  He is also extremely dependent on us, his daughters, for shopping, doctor visits, caregiver management, socially.  It is exhausting, especially mentally, on us as we are also trying to raise our own families.   I think he forgets that we're hurting and grieving, too.

Based on mom's condition, how long do you think she will linger?

Thanks for letting me vent.  We love our mother and will do this as long as we have to.  

Answer
Hi Sharon

This really is a heartbreaking phase for everyone - and so relentlessly wearing. I feel for you and for your poor father.

I wish there was a good answer for you about how long this may go on. A lot depends on her overall frailty, and whether or not you are ready to opt for palliative care.

My mother in law lived almost two full years in the last stage, and she was almost exactly the same age as your mom when she entered Stage 7. However, she was robustly healthy overall - she had no health issues to complicate her situation or bring a merciful close to that last period.  Her entry into Stage 7 was precipitated by a fall. She broke a hip, and despite a good repair, that was the end of walking, of continence, and shortly thereafter, intelligible speech.

It isn't uncommon for the person to be totally knocked for a loop by new health issues. Your mom's reaction to the heart attack, followed by infections is sadly quite normal. Sometimes, they will come back a bit with time - and as you know, they take much longer to recuperate even from even small things than a healthier individual. When you think about your own health experiences, I'm sure you've had episodes where an illness makes you really muddle headed, exhausted and distracted, feeling punk and not yourself - and that is you with your intact brain. Imagine that layered onto your mother's situation, where she was barely holding on with her fingernails to the little cognitive ability she had. Even a head cold can make them appear to decline dramatically. She may also have had a mini-stroke or infarct. These can be so small they cause no symptoms you can see other than a gradual cognitive decline - i.e. they can be tiny, and happening frequently, with the damage accumulating, and you won't see any big symptoms you'd associate with stroke.

Generally, the indicators that the person is heading into their final months are sustained weight loss (i.e. they start to drop weight no matter what you try), sleeping a lot, getting weaker to the point where they have to be propped or they will slump over, and starting to get repeated infections. It is as though everything is starting to shut down. I don't think they feel hungry - or if they do, they don't know what it means, much less what food is all about and why they should be interested in it.

I'm glad you were offered hospice care. Palliative care as per hospice type programs can be wonderfully supportive and compassionate - not just for your mother, but your father and other family members.

My husband was completely torn up by the last phase of his mother's illness because he felt there should be something he should be doing something more than sitting by her bed and holding her hand. She'd lived to see her own worst nightmare. He regrets that she ever got Alzheimer's and that such a blight was laid on her final years, but he doesn't regret opting for palliative care. He feels very strongly it was the most loving and compassionate choice, and it was what she would have wanted. It was kind, supportive and caring - the workers were wonderful. She finally stopped eating entirely, lapsed into a coma, and gently drifted away.

You really have the whammy between your mom and your dad. Might it be possible to move them both into a single facility ?  I only suggest that, because there are many facilities that offer a range of options for graduated care - so, for example, he might be able to go into his own apartment with assisted living type supports, and she might be in the heavier care section or hospice ward within the same complex. You'd have to shop around to see what is available where you live.  If you found the right facility, he might actually thrive - it might take some stress off him, and give him opportunities for activities and socializing, and access to on-site services that would make him more independent. Being housebound and dependent can really be depressing and isolating.

Certainly, the next period of time, whether it be months or years, will be increasingly difficult for him and you. The last stage is not for the faint hearted. You don't want him getting worn down. He will make himself sick, and then there will be few options left - both of them would have to be placed, and you might not get your first choices in a crisis.

It's funny isn't it, how what happens so often is their insisting on being independent actually makes them MORE dependent than they would be if they would consider a wider range of options.  You will have to watch how he does. He may not have much insight into his own situation (i.e. he's so dug in and enmeshed and distressed, he can't see the larger picture, much less think clearly about alternatives). If I were you, I would do the research and the leg work - and if you find something viable, you might have to make some arrangements and ask him to give it a try.  Could you spin it as something he could do to help all of you?

I know you know that his real job is to love her. That doesn't mean she has to be in their home, particularly since at this stage, she may have a very hazy idea of where she is or who she is with. What is important isn't who changes the sheets or spoons the pudding, or whose house she is in, but how she is treated. By late Stage 6, my mother in law forgot she had ever been married. She would ask to go home, but by that she meant to her girlhood home and her parents.  

Hope this helps a bit. I know you love both of them. This must be very difficult for you.

Mary G.