Dialysis and dementia. Does anyone have insight into this?
My husband has vascular dementia and has been on nightly peritoneal dialysis for 4 years. Recently, he has been eating much less, saying he's not hungry. Within the last week I've noticed a decline in his ability to sit upright and increased confusion. Three days ago, I took him to the hospital to check for a UTI, but there was none. They only found that he was a little dehydrated.
...As he asks me to get ready so we can go home and he can sleep and I explain to his delight that the furniture he's on (an adjustable bed) actually lays back into a bed, I don't tell him that he's lived in this house for 35 years. I've already tried that today and although it usually helps to ground him, this time it didn't...
My concern is that at a certain point if the dementia continues, dialysis will be discouraged and he will go on hospice. (Death after stopping dialysis occurs in approximately 1-2 weeks.) I'm terrified of facing/having to make that decision. Does anyone have insight into this? thanks.
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We know of a company worth checking into, Hospice At Home and Always Best Care-Mesa.
I found that answers unfold before us.......
You will just know what to do and what not to do at the proper time.
YOU will make the decisions, not hospice (you can always fire them and hire another hospice company). Trust yourself.
Your husband may do *whatever it may be* all on his own, too.
Be present and watchful.
Bless your heart.
No matter what, we are only human and humans run out of steam. We’re not meant to live forever.
When I was a dialysis nurse and folks were faced with discontinuing dialysis I saw a lot of guilt from families who feel that by stopping dialysis one is essentially “dooming” their loved one to a slow painful death. Most deaths after ceasing dialysis treatments are not painful if handled in partnership with Hospice (if they were called).
Dialysis is life sustaining treatment, but its artificial - a renal replacement treatment option. The person’s diseased kidney can’t clear toxins or fluid from the blood. But what of those who chose to pass from ESRD? Are they wrong? Not in my opinion. By withholding dialysis their CG or the person themself is making the decision to simply allow nature to take its course.
Please don’t be terrified of this inevitable outcome because you may be faced with the decision to end dialysis sooner rather than later. Try to remember the person as he once was as those great memories will help you get through this.
But please don’t feel so guilty because as the days progress you may be faced with difficult decisions. Remember quality of life counts for both of you.
If the cycler doesn’t adequately do the job, we have to change back to manuals... ugh. That means each day I will have to connect, drain, fill and disconnect his dialysis every three hours between noon until 10 pm. 😑 I did this for more than three years, every day, no break, no vacation, no freedom. I was sincerely enjoying having a little freedom since he went on the cycler.
He was diagnosed with cancer again and knew he did not have the energy to fight it again. He talked with his wife and children about this decision. This was about 15 years ago, before Canada's Medical Assistance in Dying laws came into place.
He did not have any degree of dementia.
His decision was to stop dialysis, he did this with the full support of his family and medical team. He was given the information you have that he would die within 2 weeks. He was told he would go into a diabetic coma, be moved to hospital and die there.
At this point the cancer was in his bones and he was in great pain. No one could touch him without bones breaking.
3 days after he stopped dialysis, he died at home in his bed. It was a peaceful death. His grandchildren who were under 5 were told he was sleeping, but no longer in pain and they were allowed to hug him goodbye. They had not even been able to touch him as his bones were so brittle.
I think he was 67, he died on his terms, no longer suffering. It was a good death.
I hope my reply does not sound heartless. Not my intent. But I want DNR/DNI, no feeding tube, no dialysis, no spoon feeding. I do want pain, anxiety and breathlessness (oxygen) treatment.
I have been reviewing the advanced directives which consider dementia.
Then you can discuss the options with Hospice trained people.
Did your husband ever express his wishes to you "way back when"? Anything that would give you a clue as to what he would have wanted? If not all you can go by is your knowledge of him and what his other choices in life were or comments he may have made.
I am a firm believer is Quality of life VS Quantity of life. If he is no longer the man you fell in love with, spent over 35 years in that house can you honestly say he would want to prolong his life that may not be much of a life? When he smiles at you does it seem vacant? or do his eyes smile as well? That was one thing that surprises me looking at photos of people with dementia. They say the eyes are the window to the soul, if that is the case then God had taken my Husbands soul long before his heart stopped beating because the pictures I see taken the last year or so of his life, most of them there is no life in the beautiful blue eyes I fell in love with.
What ever decision you make when the time comes will be the right one.
I always said there were 2 organs in my body that would make a decision like that my Heart and my Brain. I would want the Brain to win the argument with the Heart. It would not have been fair to him any other way.
I did look into Hospice a few months ago, but he doesn’t qualify unless he stops dialysis. This is because kidney failure is his primary diagnosis, and the dialysis is considered life sustaining treatment.