Expert: Mary Gordon - 10/15/2004

Question
MY DAD IS IN LATE STAGES OF ALZHEIMERS AND NOW SEEMS TO BE GETTING UTI'S MORE FREQUENTLY...WAS JUST HOSPITALIZED YEST. WITH THE 2ND INFECT. IN ONE MONTH...HE IS 86 AND HAS DIABETES ALSO...HIS
BLOOD SUGAR #'S HAVE BEEN OVER 200 CONSISTANTLY FOR
4 MONTHS NOW WHILE IN THE NURSING HOME..THIS TIME
HE RAN A TEMP OF 104.8 ...THE DR. HAS SAID HE FEELS THAT DAD'S SYSTEM IS SHUTTING DOWN AND WE NEED TO DISCUSS WHETHER TO CONTINUE TREATING HIS
UTI'S OR JUST LET NATURE TAKE IT'S COURSE...I'M ALL FOR FOLLOWING HIS DIRECTIVE WITH NO DNR, NO
ARTIFICIAL NUTRITION OR HYDRATION...BUT DOES THIS
COME UNDER THOSE DIRECTIVES...LETTING ONE SUCCUMB TO AN INFECTON SEEMS SO HEARTLESS...JUST LOST MY
MOM SUDDENLY ON 10/1 SO I AM HAVING A HARD TIME COPING WITH THE REALITY OF LOSING MY DAD...I DON'T
WANT TO BE SELFISH...HE WOULD NEVER HAVE WANTED TO
LIVE THIS WAY...BUT HOW DO YOU LET GO? DO YOU HAVE ANY SUGGESTIONS ON BOOKS OR MATERIAL THAT WILL HELP ME...THANK YOU   TERI

Answer
Hi Teri

My heart breaks for you - I've been there/done that - my mother-in-law died from Alzheimers - not from an infection or other illness - but from the real deal. AD took her right to the end of the line.

I think you already know what goes on in the last stage - essentially less of everything - motor abilities deteriorate, the person looses the ability to walk, talk, sit, smile, bladder and bowel control goes, eating difficulties begin (both loss of interest and loss of ability to chew and swallow), they loose the ability to recognize people, sleep a lot, don't know where they are etc. etc. )

I know what you are going through - just when you think it can't get worse, it does, and family members ask themselves how much longer can this go on because it is just so painful for everyone - and its doubly hard for you because of your recent loss. I've been in your shoes. Both of my parents were gone by the time I was 34 (and I had to give the "pull the plug" instruction for my poor father after a catastrophic brain bleed at 63), and both my husband's parents were gone by the time we were mid 40's.  

I don't know if there is a way to prepare. Certainly in our house it was very hard. We found that most family members and her friends stopped visiting during the last two years or so. Once my MIL could no longer talk (just garbled nonsense syllables), and was sleeping all the time, many of them could not figure out what to do with her on visits. She couldn't be taken out, she couldn't walk (she broke her hip and couldn't do the physio, so that was the end of walking), she couldn't be conversed with, she got agitated easily, she was often disheveled (despite excellent staff who worked very hard at keeping her presentable), she was very thin - and the sight of her in such a state was so upsetting, that many just stopped coming.

I think when it comes to AD, the lucky ones who are those who are carried away by other illnesses - because the natural end of AD is pretty brutal on everyone, as I'm sure you have an inkling of - I recall seeing some of the "living dead" in the nursing home long before my loved one reached that stage and I just couldn't imagine her like that.  Towards the end, the person really is gone in every way that matters - it is like having to have the corpse laid out indefinitely without the closure of a funeral.

One thing you could do is to talk to other family members about what might come next and what the options might be. If your father had a major illness such as pneumonia or cancer, do you want him treated other than comfort measures (i.e. pain killers). If he had a heart attack or other sudden emergency, do you want them to try to recuscitate him - or let God and nature take their course? Did he have a living will expressing his wishes? I ask because these are things to consider, even if they seem callous.  The question becomes - is it kinder to let the person slip gently away from something like pneumonia, or aggressively treat them and keep them going (which can involve suffering in itself) and then bring them back to their steadily declining existence where they have no quality of life. There are a lot of moral and religious issues involved for many families - and only you know your father, what his wishes were, and also what he has left in terms of awareness and quality of life.

As I know you know, it is very common in later AD for the person to develop serious problems with eating - they can have big problems chewing and swallowing even soft foods (their muscular coordination goes), or, like my mother in law, they completely loose interest in food (not sure if they have no appetite or just have no idea what food is). They can even start to refuse to eat. This means you have to think about artificial feeding or IVs - or letting things take their course, which is a very hard thing for most families. I know you are struggling with the idea of not treating infections. Imagine what it means to stand by and let the person die from dehydration or starvation, which is essentially what happens in the very end stages of AD.

There is very little evidence that a feeding tube prolongs life OR alleviates suffering - in fact, most of the evidence suggests it actually causes suffering. Very few doctors who are experienced with end of life issues for Alzheimers patients would recommend such a measure - the majority would support palliative care as the most humane.

We made the latter choice - not something every family is prepared to do. We were fortunate in that my mother in law had written out a living will so we knew what she wanted (no artificial or invasive means to keep her alive, no resuscitation etc.), and we had the support of the doctor, the care facility and our religious counsel, so we were personally at peace with doing what might seem a terrible thing to some people (and something that can create wars within families when there are disagreements about what the right thing to do is).  

This is gut wrenchingly difficult to do, because you have stand back from wishful thinking. I know if there was a chance to restore your father to the way he was before he got AD, you would move mountains. But that isn't going to be - and the hardest choice of all is...to do nothing, hold his hand, and let the tide go out. You can't let this decision be about you. I know its so hard - but this is one of those times when you have to stand back and really make decisions based on what is really best for your Dad, based on what you know he would want. You have to summon up every bit of maturity and strength you have, and hold back that dear little girl who can't bear to see her parents go. Our culture has a hard time with death - we have this notion that it is something to fight at all costs - but honestly? I personally think there are some things worse than death. Being held somewhere between earth and heaven because someone we love isn't ready to let go - this seems like a terrible thing to me.

My mother in law essentially stopped eating about 6 weeks before she died. We kept her very comfortable and kept offering her food and drink many, many times a day right to the end (and she continued to refuse, right up to the end).  I'm sorry to be so graphic - but it actually was a very gentle death, with my husband holding her hand. She did not seem to be suffering - and she did not seem to be at all interested in food or drink - she just sort of faded away over a period of a couple of weeks. I wonder if what was left of her just decided she had struggled enough and it was time to go. It was a terrible 6 weeks though. I won't minimize that - it was hell. You can see how a little infection might actually be a prayed for "friend" to help them on their way. If you ask my husband (an ony child) now how he felt about those last weeks, he will tell you he 100% feels he did the right thing, no question in his mind at all, and he was so grateful to be there with her at the end.   

You might want to talk to your local Alzheimer's support organizations to connect with others who have gone through the late stages and had to make various hard choices.  

Your father's doctor is also broaching the palliative care idea. Does the care facility have a good palliative program? Can you get some councelling about palliative care and what it means? Your father's last months should be as comfortable and peaceful as possible - as painfree, as gentle, as free from fussing and messing with him as possible (i.e. no panicked trips to the ER in the middle of the night). He should be surrounded by love - this is a profoundly spiritual time - and let it be that. This is a time for you to really come to terms with the end of his life. Its a priviledge to sit quietly by someone's bed, loving them, saying goodbye and not have the swirl of pointless manic activity and terror that goes with so many people's last days. I know you are having trouble seeing it that way now, but I promise you, your heart knows the truth - and if not now...soon.  

This hurts so much - but consider he is already leaving you in a very real way - your "real" father is already like a point of light in the sky, and whats left in the bed is a shadow. Part of the pain is the grieving process. With Alzheimers, you do so much of your grieving before the person actually dies physically. I know when my mother in law died, we were actually relieved. We were sorry she got AD, we were sorry she had to suffer so much, we were all  sorry we'd lost a mother, a mother in law, a grandmother, a sister, a friend - but we weren't sorry at all that at last she was free and at peace.

I hope this helps. I know how very painful the entire subject is - and how much you loved your parents and want to do the best for your father. If I haven't answered your question well enough, or you want to ask for clarification (or something else entirely), please feel free to e-mail me again.

Mary G.
Toronto