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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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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 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 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 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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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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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 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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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 2019
Thank you So much for your kind message.
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I had checked once into Hospice for my Dad and you pretty much have to know if your Loved one has only 6 months to live. I am sure Hospice is not the way to go but Perhaps a Facility outside your Home for Him to Go, Maybe be Best from the Rest now....
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anonymous875604 Feb 2019
Six months is not required for hospice care. You can go off it if the patient improves and go back on it later. This lady needs hospice care for her husband.
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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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Hi, I really feel for you as I just went thru a similar thing. I lost my mom less than a year ago to lung cancer and did in-home hospice for her by myself. After she passed dad went down hill fast. He had stage 4 Mesothelioma and CHF. He also had dementia. I live in Southern NH he lived in Maine. 2 Hours away and insisted on living alone. He kept taking spills. At first they were small ones just a bump here and there but as time went by they got more dangerous. I took a leave from my work to try and convince him to go into a assisted living but he would not have it. I kept telling him if he fell and broke his hip it would be over. So one day while I was getting dressed he took a spill on the bathroom floor. He broke his back. I still remember him saying as the ambulance wheeled him out..."At least it's my back and not my hip." He was dead a week later :( It is sooo hard to get them to help themselves and the sad part is you don't even have the law on your side. I tried to get his doctor to say he couldn't make good decisions for himself but he told me he could make decisions good or bad still. I really felt the doctor knew he only had a short time to live and didn't want to take on the fight. When my dad finally went into a nursing home after his broken back. I went up to see him as I had moved him down near me to recover. I went after work and his oxygen tubbing was wrapped around his neck and he was choking. I couldn't even find a nurse to help me anywhere. Needless to say I had him moved ASAP to a beautiful hospice where he passed in peace. The stress is so hard. I totally understand what you must be going thru. I was exhausted in everyway possible. No one knows what this is like until they walk in your shoes. Hang in there. Give as much love as you can. Make time for yourself. There is no cookie cutter answers as each elderly person is so different. There are some great places out there to help you and wonderful people you just have to do some weeding. You can only do the best you can do. Hang in....prayers
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gdaughter Feb 2019
Oh...my eyes are filled with tears as I read your words. I am so sorry for your loss and all you have been through...but take comfort in knowing you helped your dad live his life on his terms to the very end and that is really what we all want.
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Can you afford even one day per week of nursing care? A trained individual to do the manual dialysis if necessary? Then you could have a much needed day off...my heart goes out to you, you are such a loving spouse, hang in there.
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I can't imagine the anguish of this. In your mind I expect you know there is an end coming, and of course do not want that, and your heart is breaking, let alone knowing the decision will be yours. I'd guess hospice could already be involved, if that were your choice. These days there is usually more than one hospice to choose from and so I might use this time to investigate and get feed back on which is the best. If your husband has limited interest in food/eating, I'm guessing he may be making some decisions indirectly. I hope you have some support, and hospice could be part of that as they have probably dealt with this many times unfortunately. ALthough I haven't used them personally, I know the guy who started an organization called Curadux, which means care guide. There is a fee, and I don't know how it works insurance wise, but they have a website and the people involved have been through similar situations BUT they are also very experienced professionals. The guy who started it for instance is an MD who has been critically ill himself and has nothing but compassion for patients and family members going through hell. This is a guy who called me from his vacation when I emailed about the care I was distressed about that my father received that fell in a branch of his department. Will hold good thoughts for you. Sending hugs.
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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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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 2019
Yes, this is a consolation. There’s too much suffering in this world.
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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 2019
Thank you, Margaret, for your support. It’s good to know people care and have been through it before.
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My husband is trying to give away the furniture now. He was always generous, but! It feels like he’s preparing for the journey.
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I'm praying for your husband. God bless you. Oftentimes the person will predict their own demise. My late mother did. Big hugs ((( ))).
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JuliaRose Mar 2019
He’s been predicting it would happen for 4 years now! Until my unitial post, I had become desensitized. Let’s see what happens.
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We would encourage you to look into a non medical in-home caregiver that is trained in dementia. That disease can progress very quickly and if you are thinking he would be put on hospice soon there are hospice out there who partner with in-home care agencies to help. That why you can spend quality time with your husband and even taking a break.

We know of a company worth checking into, Hospice At Home and Always Best Care-Mesa.
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JuliaRose Mar 2019
Thanks, yes. We have outside help from an agency 5 days a week.
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