Expert: Mary Gordon - 10/1/2010

Question
QUESTION: My father has had Alzheimers for several years now he is 72. My family
believes he is in the final stage due to a number of symptoms but one this
week is troubling as we are wondering if his kidneys are failing. He has had
some accidents and we just began depends but the last few days he has had
no bowel movement or urination. He is weak and lethargic. Not eating which
has been off and on for months now. Drinks very little. We give him ensure
just to be sure.  We had our hospice nurse over and she checked his blood
pressure and all was fine. She has said its possible that his kidneys are failing.
My question is could he be falling off this quick even though he had just
started the beginnings of incontinent? How do we manage this slow death or
not and what other suggestions do you might have as to what's going on, is
my dad in any pain that we can't figure out as he can not speak.
other symptoms have been with us for a very long time. He weighs 118 from
a loving proud 155 in just ONE year but as i said earlier he has had the
disease for almost 8 yrs now. Thanks for your time and i hope answers.



ANSWER: Hi Dana, it may well be that he has some health complications.

As you observe, if his incontinence has only been occasional up to now, he is not in the final spiral of the Alzheimer's itself. For those unfortunate enough to survive to the bitter end of the dementia itself (such as my mother in law), the usual drill is that they become incontinent, lose the ability to walk, talk, or do anything for themselves. They generally spend their final months being carefully hand fed, propped up in a chair or bed, sleeping most of the time or staring into nothing, not really aware of where they are or who they are with. They eat and drink less and less, lose more and more weight, and finally stop eating entirely no matter how you coach them. Within days - although it can be as long as a week or even longer - they lapse into a coma and pass away.

My mother in law survived two years from the end of all continence and walking. Having been through that slow long process, although my mother in law didn't seem to be in pain at all, it was brutal on all of us, and not at all what she would have wanted for herself. I think it would have been much kinder had some other health problem mercifully carried her off before those final months, but she was extremely healthy other than her Alzheimer's.

It sounds like perhaps some other issue has arisen with your dad - and that could potentially carry him off. Here are the symptoms of kidney failure, which do sound like what could be happening.
http://www.medicinenet.com/kidney_failure/page2.htm

Because they become so frail and their immune systems so compromised, people in later dementia are very susceptible to assorted health problems. Not only are they physically frail, but it becomes very difficult to detect and diagnose health concerns when all you have to go on is external observations. The person can't tell you how they feel or answer questions, and so many families decide that unless their loved one appears to be in pain and distress, it isn't worth trying to put them through diagnostic tests and procedures that could be scary, uncomfortable or even painful - never mind try to treat some major problem. So many families opt for palliative care, such as hospice as you have, and wouldn't treat most issues anyway, beyond keeping the person comfortable and out of pain.

If he does have kidney failure, it may be from his not taking in enough fluids, or might be secondary to some other problem entirely. Even if you knew exactly the cause of what you are seeing, would you want him treated for it, or any underlying condition? Does he seem fussed at all by his condition? Does he seem to be in pain?

I know the uncertainty, the watching and waiting and is very, very hard on everyone who loves him. All you can really do is watch and wait. If it would make you feel better, ask if a doctor could drop by to see him. At least then you might get some reassurance about his feeling comfortable.

Thinking of you. I wish I had a good answer for you.

Just as an aside, during the year when he has lost all this weight, has he been assessed by a speech pathologist for dysphagia? If he comes out of this and starts to eat again, you may want to get some expert advice on diet and how to get more calories into him with careful handfeeding (whether that involves higher calorie foods, difference consistency foods or more frequent small meals). At his stage of the disease, he shouldn't have been plummeting in weight like that.

Mary G.

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

QUESTION: Dear Mary,
Thanks so much for your suggestions. At this time we have had the nurse
from hospice come over to have an evaluation and its as we all know Dad is
slowly passing away possibly to other complications but all in all Alzheimers.
He does not seem in any pain just very tired and not responsive as he usually
is. He is hallucinating still but he did go to the restroom and that was good
news. The color of the urine was a deep orange/red. He seems to be in no
pain just sleeping more.
My dad has not been able to express words for almost 2 years now and he
has not known any of the family members in years just some what of
familiarity is all.
My mother is the prime caregiver and she has had made sure he is
comfortable and continues to try and feed him to a point  as you know loving
frustration. I agree that there is something more but at this stage we have
decided to keep him in hospice care as our crew have been extremely
amazing and we are so fortunate to have them with us.

The disease is painful for everyone as you know but we are in good spirits as
we hold on and we are making sure that our dad and our mom are taken care
of. You are  kind to be able to reach out to others the way you do .....thank
you, you really have helped us.

all the best, dana

Answer
I really feel for you Dana, having been in your shoes. I am so sorry you are all going through this. It isn't fair, is it? None of you deserved this, least of all your poor father.

I know what bothered me the most about my mother in law was that after a lifetime of hard work and sacrifice, she should have had some happy golden years to enjoy her grandchildren and family,  and maybe even some travel. She was so healthy physically, and she should have had some good years which were stolen by her dementia - it's that much worse that your father is so young.  

You sound like a wonderful daughter. He's lucky to have a family that is so involved and caring and making decisions based on love and kindness.

It just breaks your heart. And you are absolutely right, the Alzheimer's will be what caused his death, whether it's now or later, because having a dementia means an earlier death than would be likely in a person without it. After all, if his mind was intact, treating medical issues would be a no-brainer - but in his current condition, it just feels like torturing the person to send them to hospital or for tests and procedures - especially if all you accomplish is give them more time to suffer with a steadily declining quality of life. Not all families are as mature and brave as yours. You are doing exactly the right thing for him, in my opinion, to surround him with love, peace and compassionate care, and let the tide go gently out.

Wishing you peace and hope the coming days are gentle on all of you.

Mary