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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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This is a story from a childhood friend of mine. Her Dad was diabetic, he had beaten one round of cancer, several years before, but now was on home dialysis. He had other complications from diabetes.

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.
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JuliaRose don’t be terrified of allowing nature to take its course.

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.
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JuliaRose Feb 27, 2019
Thank you So much for your kind message.
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I don't envy your position here. In my estate planning documents, I am including no dialysis. Again, I am sorry you are in this. I think those with actual experience will chime in.

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.
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JuliaRose Feb 26, 2019
I’m actually glad he went on dialysis because a person can live a long time with a kidney function of less than 15 and be extremely uncomfortable (lung edema was one of the worst early symptoms before starting dialysis). I understand your reasoning, but I might encourage you to consider going on dialysis if needed to allow the kidneys to get bad enough so that when you choose to stop this medical intervention, you can pass pretty quickly and easily.
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Two of my mom's doctors discourage dialysis with dementia for a couple of reasons, most important is the safety with the catheter lines if they are dislodged or pulled. Her nephrologist explained that the natural process of death in renal failure is one of the easiest. The person just gets sleepier without pain
You will also find as he gets weaker how difficult it will be in transporting him since insurance may not pay. With dementia, are you willing to be with him for 4 hours every other day for his safety? Dialysis techs will not be able to accommodate his personal needs.
It sounds like your husband's body is beginning to shut down if food is getting less important. His statement about getting ready to go home is his pronouncement of near death awareness. I recommend the book Final Gifts by Callinan and Kelley.
You say you are terrified about making this decision, but what about his quality of life and this disease having the effect even on your quality of life as all of your waking hours become only caring for his life
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JuliaRose Feb 27, 2019
MAC, wow, thanks. I included that short exchange in my initial post because it did seem odd, and as I typed it I started bawling wondering if it was near death awareness. Thank you for the book recommendation. I uploaded it, and it confirmed what you wrote.

The dialysis is done at home each day by me, so there’s no issue of transportation. I agree, the main issue I can see with dementia is the challenge of safety and sterile procedures. Thank you for your insight.
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You can contact Hospice now and see if even with dialysis if he is hospice eligible. There may be other factors that would make him eligible.
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.
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JuliaRose Feb 26, 2019
Thank you, Grandma. He doesn’t want me to “give up on him.” He’s not ready to go although he’s fed up with his limitations. This makes it more difficult.

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.
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I am under the impression that the dialysis your husband is doing is a last ditch effort. I had friends on it. Was your husbands numbers checked to see if the dialysis is helping with cleaning out the toxins. If Toxins are high, maybe be contributing to the confusion.
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JuliaRose Feb 26, 2019
Thank you, Joanne. You may be right. We changed to the cycler machine two months ago, and it’s not doing as good a job as manual exchanges were. His numbers are being rechecked tomorrow.

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.
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Dear Julia Rose, please don’t be frightened. Your husband’s body is making the decisions, not you. What you are trying to do is to make things as easy and painless as possible for his end of life, which you know is coming. You have been a wonderful wife, and you have shown huge respect for him and for all that you could do yourself. Have courage! Your, Margaret
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JuliaRose Mar 2, 2019
Thank you, Margaret, for your support. It’s good to know people care and have been through it before.
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JuliaRose..it sounds like Dad is helping in his own way to make some of the decisions. I can't imagine all that you have done and have been doing for so long. Love is a powerful force.
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Wait and see.
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.
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If you take him off dialysis, at least you will have the knowledge that he won't linger more than a couple weeks, if that is of any consolation.
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JuliaRose Feb 28, 2019
Yes, this is a consolation. There’s too much suffering in this world.
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