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By lynn On 2010.03.15 08:56
I need some advice from experienced caregivers. My husband is end stage with full dementia. He swings from being lethargic to squirming in his wheelchair. He is fully dependent on caregivers. he seems to be having diarrhea lately and I don't know what to give him because he is usually constipated. Any advice would be appreciated. Also he continues to lose weight. this is probably unavoidable. I really don't know what to expect but his decline has been rapid since surgery in early November to repair damage from repeated falls. His cognitive loss has prevented any benefit from therapy. Talk to me caregivers who have gone thru this.

By caregivermary On 2010.03.15 13:34
Lynn,

I know you are trying to resolve all of these issues. For the diarrhea, try some binding food. I believe your husb is on pureed foods-right? Can he have milk shakes or ice cream? Is there another reason for the diarrhea? Cutting down on what you are giving him for the constipation may also help.

The swings between lethargic and squirming as you called them may be helped with some ativan. My husb has been doing this and many people told me to use the ativan for it and it does help.

Losing weight at this point is par for the course. I know how you feel but there is really not much you can do except giving him high calorie drinks.

You mentioned once before asking the Dr. for a hospice eval. You can contact a hospice and have them do the eval for you and then communicate with your Dr.
Hospice will benefit you greatly in answering your questions immediately and help you through this each step of the way.

My husb is not far behind your husb based on the description you gave so I understand how you feel. You can not fix all of these issues. Unfortunately, nature needs to take it course.

Take care

By Mary On 2010.03.15 14:14
Lynn, you are at such a difficult place. I agree, it is more than time to get hospice services to help you and answer all of your questions. My Dad had diarrhea for the last month of his life. It was explained to me that we all have a balance of good and bad bacteria in that area and his bad got out of hand causing the diarrhea and whatever it was, it was very contagious. He never recovered from that problem. The weight loss is part of the end. I believe it is nature's way. The anxiety can be treated with medication. Hugs and blessings to you, Lynn, from Mary

By annwood On 2010.03.16 10:51
As you may know, I lost my husband to PD two years ago. The last three months of his life were pretty much like what you describe is going on. The hardest thing for you to do is accept the fact that you can do nothing to halt this progression. We spend years trying to right things and then you reach the point where there is nothing else that can be done.

I believe that the most important thing is making him as comfortable as possible. Don't worry about nutrition at this point - give him whatever he wants or will eat. I would talk to the doc about the diarrhea and see if starting him on low dose Immodium won't reduce it. (Only if the doc approves). It is important that he get a lot of fluids if the diarrhea continues.

The weight loss is part of the end stage disease. I was shocked to learn that my husband had lost 25 lbs the last three months of his life. It is hard to not feel guilty about this but try.

A recliner is sometime more comfortable than a wheelchair but you will need assistance to get him in and out of it.

Call Hospice TODAY. They can really help you with much of this. Supplies, meds and most of all a resource for you.

By sjcostello On 2010.03.17 12:54
Lynn,
I lost my dad to PD almost two years ago, and it was traumatic. My having PD also didn't help much. the hardest thing to accept is that you can't stop the progression. I had to keep telling myself that in spite of his dementia, he knew I was there. That little mantra paid off, for he was able to mouth an "I love you" before he went to sleep the night he died.

Along with the others, I cannot recommend hospice care with enough enthusiasm. May I also suggest a wonderful book by a hospice chaplain, Wooten-Greene entitled "When the Dying Speak.? It helped me tremendously in dealing with my father's seemingly off-the-wall comments that really fit a pattern of communication that became my most treasured memories.
The whole ordeal is just that - an ordeal. Forgive yourself for not being able to make him better. You never could. You can only help him to be more comfortable, and even that has a time limit.
The book helped me more that any minister, friend, or medical personnel.

My heart goes out to you,
Sue

By Emma On 2010.03.20 05:51
Lynn,

We haven't gone through this yet but I just want you to know that I am thinking of you. Stay strong.

By lynn On 2010.03.20 17:28
You all give such good advice. I will call hospice because I know it is time. My husband has been totally dependent on caregivers for over 3 months. His speech is mumbled and when I do understand, he talks about his delusions. He can still sit upright in his wheelchair or in the recliner. Once in a while he can stand with great assistance for a few seconds to go to the bathroom. I wonder how much quality of life he has. He still knows me and the people who visit but can't remember a few hours later that someone was with him. I'm very anxious now because I feel I'm just waiting for the next bad thing to happen. I'm struggling most because I don't know whether to treat an infection at this point or let nature take it's course.

By janb On 2010.04.02 11:44 [Edit]
during my mothers last months we dealt with the problem of going from diarrhea to constipation. Her Dr. had us monitor this closely, quickly going from Imodium, sometimes as little as half a dose to lactulose for constipation. This close watching the situation seemed to keep things from getting out of hand.

By Emma On 2010.04.02 18:17
lynn,

Just want to let you know that you continue to be in my thoughts a lot. Only you can decide what to do about the infection issue. If I were in your situation I think that I would elect to go with comfort care only which I believe is the Hospice protocol as well, but I'm not in your situation.

Keep us posted, we care about you.


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