Expert: Mary Gordon - 2/4/2008

Question
QUESTION: Hello Mary,
My Father is in the beginning of stage 7, he can no longer speak, has not for over a year, is incontinent, can walk but only with tiny baby steps. Has to have help eating,requires total care. Cannot be left alone.

Is this a time to stop treating pneumonia and when can we qualify for Hospice care?  I do think his life span is still much longer than 6 months.

Vicki

ANSWER: Hi Vicki, this is a tough question. Its always hard to know, since if he is generally healthy other than his dementia, he may well live some time.

My mother in law survived for a full two years in the last stage, incontinent, unable to walk or talk, or do anything for herself - but she was 78 when she went into the last stage, and probably would have lived to be 95 if it had not been for the Alzheimer's. She had been robustly healthy to that point, and thus had no factors to add to her frailty, complicate her situation, or hasten her end.

As you know, now that he is spending most of his time in bed or in a chair, he will start to spiral. His muscles will deteriorate, he will be weaker, he will sleep more and more, and become more susceptible to infections.

There are going to be some big issues for you to grapple with. If he starts losing weight, even with careful hand feeding, or starts to refuse food and drink, have you thought about how you will handle it? Are you ready to let him go, or if tubes and IVs were offered would you be tempted? If he suffered a heart attack, would you want him resuscitated? If he developed any serious health problem, can you deal with him receiving comfort measures only? If he got an infection, when would you treat it? Would you treat the minor ones and not the major ones? Are there circumstances under which you would allow him to be taken to hospital? Did he have any specific wishes (i.e. a living will etc. ). If he developed bedsores, what would you want done?

One of the first places to start is by calling a care conference with his caregivers and his doctor to discuss how to manage things going forward. The staff at my mother in law's facility were willing to let the family make the decision, but they all expressed relief when we told them that we wanted palliative care - and that was an option the facility was very comfortable with, and quite equipped to offer.

My mother in law ended up living her own worst nightmare. Her mother had lingered after a stroke, so we knew that her preference was not to be resuscitated should she fail, and to be kept comfortable and out of pain. My husband was an only child, and it was a very hard decision, as I know you know.  At some point, living or dying, each involves suffering, and you have to be ready, and know in your heart you are doing the right thing. You have to be sure you can live with it, and not feel guilty. You need to reach a point of clarity.

We actually prayed for her death - and you know what an odd feeling it is to even think a thing like that. To love someone so much, and actively hope the end will come soon for them. It sounds like a terrible thing to hope.  

It is extremely difficult to sit by their bed, love them, hold their hand - and do nothing to intervene other than make sure they are in no discomfort or distress. We always feel we should be doing something to fight the inevitable. We found the staff at the facility were very compassionate and supportive. I can't tell you the final weeks weren't difficult - in truth, it was brutal. Many people with AD actually die from starvation. They don't seem to feel hunger or thirst, and they just take in less and less until they stop eating entirely. We kept trying to offer food and drink to my mother in law, and she would push it away. It was very slow and peaceful, but it went on for weeks, which was very wearing on everyone who loved her.

You will have to ask about hospice care and what the rules are where you live, because insurance rules vary so much from place to place. Generally, when the person is expected to live six months or less, hospice care can be called in.  You need to have a frank talk with her doctors and any staff involved with her care.

I'm so sorry you are going through this. Its very hard to know when to "stop" with the efforts to keep someone going. It wasn't one specific incident that told us when it was time - it was more that there was really no quality of life left for her, and we felt the tide had turned. We just decided that the time for fussing and poking and prodding was over, and the most loving thing we could do for her was to keep things quiet, serene, and peaceful.

I'll be thinking of you. Your father is fortunate to have you asking these questions. This is a subject that requires a depth of courage and maturity that some people just don't have. Clearly you love him very much.

Mary G.
Toronto

---------- FOLLOW-UP ----------

QUESTION: since my father still may live for quite a while, even though he is in stage 7, Do you mean for several years? He is 68 and has had the disease for 8 years. We still care for him at home.
How do you know if someone has 6 months with Alzheimer, I thought there was no way to perdict with this disease and therefore it would be hard to know when Hospice could become involved.

Vicki  

Answer
Vicki, I would ask the doctor that question - but yes, given that your father is quite young, he may live on for a couple more years. Its very hard to predict. Signs that things are moving south are continuing weight loss and infections, and problems swallowing.

Obviously, the older you are at this stage, the more likely you are to have a constellation of health problems that will contribute to deterioration.

I know you don't want to hear this, but I had a neighbor who lived on in the last stage for about 6 years, and as I said, my mother in law lasted two years.  The neighbor was like someone in a coma. She was in a facility when she got to the point the family just couldn't manage her,  but they never used tubes on her - if you stroked her throat she would swallow, so they managed to keep her fed.

Your father's doctor is the place to start, because you need his signature to qualify. I'd also call your local Alzheimer's Association and see if anyone there can give you advice about hospice services in your area, and the ins and outs of when to call them in.

Here is a very helpful website with information about Alzheimer's and hospice care
http://www.ec-online.net/Knowledge/Articles/hospiceknox.html

Mary G.