Expert: Mary Gordon - 10/4/2009

Question
My mom is 85 years old and suffering from dementia (multi infarct). She was hospitalized in May 2009 for very severe stomach ulcers. A feeding tube was inserted. At the same time there was severe deterioration in cognitive functioning. She is now completely bedridden, incontinent and continues to be fed by the feeding tube. She is on a urinary catheter. She is unable to speak or swallow. She is totally immobile except for some very limited movement in her legs. She is being cared for at home. There is 24 hr assistance available.
We are aware about pressure sores and urinary tract infections.
She is on a two hour turn schedule. She is asleep most of the time.She does open her eyes sometimes for just one or two minutes - sometimes an hour or more and on some days not at all. She is being exercised daily to maintain flexibility of muscles. She is also being lifted and put onto a wheel chair two times a day. This process has become increasingly difficult. In the beginning there used to be some participation from her, but that has gradually reduced to nothing at all. She now needs to be lifted by two people and placed in the chair. She cannot hold up her body or neck and has to be propped to maintain a sitting position. Most of the times she is not even aware that she has been so lifted and placed in the chair.
Specifically, what are the advantages and disadvantages of continuing to put her into a wheelchair ? How many times a day should this be done and for how long every time? Should it only be done when she is in an "alert" state ? - which could mean only once to three times a week? - instead of twice a day?
It is heart wrenching to see her deteriorate like this. How long can this stage continue? What more can we do for her ? What else should we expect? Does she feel physical pain? Is she aware emotionally?  

Answer
Hi Al, its very hard to know how long she can continue like this. However, as you know, even people who are completely comatose can and do survive for long periods of time.

Generally, when a person with dementia, particularly someone who is frail and elderly, reaches the point your poor mom is at, they have a expected lifespan of 6 months or length. As you probably know, in most places, the condition she's in would qualify her for palliative programs such as hospice care.

It might be time to sit down with the doctor or other health care specialists involved in her care, and have a talk about the goals and expectations for her treatment and care, and what is best for going forward, in light of her current condition and whatever wishes she may have made known. As part of that conference, you will want to go over all her current treatment and care, and determine what should be continued and why.  I know these are hard things to talk about, much less think about - but really think about purpose - if there is a genuine purpose to getting her into a chair (as opposed to propping her in bed, or repositioning her), perhaps the health care professional can go over it with you. Everything that goes on should have a purpose that is in harmony with the goal, and the goal needs to be very carefully thought through. Is the goal to prolong life....or prevent suffering...or ?

if you are ready to consider palliative care, are there things going on right now you may wish to discontinue doing. One area you will want to discuss is what you would consider doing if she experiences any kind of crisis. Would you want her rushed to hospital? IVs? Tests? More tubes? Respirators? Antibiotics? Other drugs? Would you want her resuscitated if she stops breathing? Do you want to continue with the feeding tube?

I ask because you have to be at peace with all of this, and feel you are doing the most compassionate things for her. You know recovery is not a possibility, but you have to comfortable with the coming choices. Just keep in mind that "more" isn't necessarily "better" when it comes to end of life care.  We always feel like we should be doing something, or throwing more weapons into the fight - and the reality is, sometimes the best choice is to keep the person out of pain, surround them with compassion and love, and let the tide go out. You knew her best. What would she have wanted for herself.   

At this stage, I don't think she is aware of her surroundings, or of what is happening to her. I don't think she feels much in the way of discomfort or has any real self awareness. Her brain damage mercifully means she won't be torturing herself with thoughts or fears - if she is sleeping most of the time, I'm sure she is at peace.  At this point, they also don't feel hunger or thirst like a normal person would - I just don't think their poor injured brains can really process most physical sensations. I think this is much harder on you than on her. She is passed the point where she is aware of her situation. It really is as though she is already flown, and there is just the slenderest of threads holding her to her body.

We opted for palliative care with my mother in law, and her last weeks were very peaceful and comfortable. We regret deeply that her last years were so blighted by dementia, but we feel very strongly that she got the very best care in her final weeks and that we made the right choices. She got the kindest, most loving treatment possible, and exactly what we knew she would have wanted. She had Alzheimer's. Like your mother, she slept all the time. We kept her repositioned often and propped comfortably. She was kept clean and dry. We offered her food and drink (which she had no interest in) and kept her mouth moist. She was not in any pain. We sat by her bed and held her hand, although I don't know if she knew anyone was there. We discontinued all medical treatments beyond comfort measures - and we watched the tide go out. It was just her time, and we were there to see her off, and not trying to stop her little boat from launching. It was not a fast process - that final period lasted several weeks.

There are some really good links to various articles on this page http://pdcronline.com/
Try under the Dying with Dignity and Ethical Issues and End Stage Dementia care tabs and you will see all kinds of useful articles that may spark some thought for you, and help you with the difficult decisions.

Mary G.