- What factors are making this decision difficult? - Does he understand he needs it and what it entails? Would he be compliant with the dialysis? - Who would be driving him, staying with him during dialysis? Is the nearest dialysis center in reasonable proximity? - Does he have other health issues? - Are you his MPoA?
Per your profile, you have a lot on your plate already if you are his main/only caregiver...
Please discuss options with the doctor and with Hospice. Depending on the stage of Kidney Disease would depend on the life expectancy if he deicides to discontinue dialysis. If dad is fully cognizant he and you and any caregiver should be made fully aware of the process that he will go though. Hospice can help with symptoms and pain management.
Who is going to do transportation and is it feasible? Will he sit still for 3 or so hours and not try to get up or pull out lines? That could be deadly. Did you ask about side effects post dialysis? What decisions will be made if he goes on hospice? He most likely never be a transplant candidate. At this time you might want to get a hospice consult to balance the decision making
I'm 86 and competent (at least as far as I know). FWIW, if I could still participate in making a choice, I likely would refuse dialysis and elect hospice/palliative care were I in the elder's position here. From what I've read/heard, the dialysis process is physically draining for the patient and time consuming. Frankly, I'm too old for that!
My 80 yo mom (retired ER nurse) has decided that when she's a candidate for dialysis, she will decline. Quality of life is more important to her than length of life.
Hi, I'm new to posting, but have been reading on this site for several years. I have been caring for my husband for approx. 5 years. He has many medical problems, being on dialysis is one. He is 85. Please get all the info on what it takes to be compliant with the food and water restrictions when on dialysis. There is a lot to adjust to. Who does the cooking? You can talk with the dietitian at a dialysis center. Get all the info you can and see if he is able and willing to follow the recommendations. Wishing you the best.
Dialysis will involve having a access to his blood stream surgically - either a special IV catheter that will have 2 hubs that stick out of his skin or an AV shunt (huge, thick area where a vein and artery are surgically connected) under his skin. The access are for a catheter is usually in the neck or chest but some folks have one near their groin. The AV shunt is usually in an arm, but it takes awhile to heal and "mature" before it can be used. He will need to go to dialysis 3 days a week - Monday/Wednesday/Friday or Tuesday/Thursday/Saturday for the rest of his life. Dialysis can take 3-4 hours to complete. He will feel very tired and "washed out" afterwards and many times have muscle cramps. The days he doesn't have dialysis can make him feel uncomfortable since toxins are accumulating. Most dialysis patients have problems with very dry and itchy skin that smells a bit like urine. Lotions and very mild soaps can help this. He will need to follow a special diet and may have to have fluid restrictions.
P.S. I am an RN and take care of dialysis patients (as well as other types of patients) in a hospital.
Not sure if this applies to your situation but several months ago my husband was told he would need to go to dialysis 4 days a week, 4 hours a day based on his lab work. He is 78 yo; e does not have dementia. He has numerous health issues as he was exposed to agent orange and asbestos when he was in the Navy during the VN war.
We asked if there were any alternatives. The doctors said we could possibly reverse it if we could RADICALLY change his diet. So we met with a kidney specialist and still currently meeting by Zoom with a dietician every month who specializes in this area. By completing changing his diet, eliminating all meat protein, as well as eggs, dairy, and as much potassium as possible (which is very hard on the kidneys), we were able to bring his labs back into range and eliminate the need for dialysis. While I realize this is not possible for everyone, it is worth discussing with his doctors. It isn't easy because of the labor-intensive food preparation (which falls on me). I follow the diet with him to support his efforts. We have to eat extra plant protein and take calcium supplements. If you had told me six months ago it is possible to reverse the need for dialysis just by changing diet, I never would have believed you. But I believe now!! I am also praising God for this turn of events as neither of us was ready to lose him to this disease. The doctors were amazed and say if we can stay on the diet, the prognosis looks good. Best wishes to you both!!
Big decision, especially when you think of all the issues that other people mentioned. My father was diabetic for years, on home dialysis that he managed for several years and then on hemodialysis for years. Late in life, he could hardly walk due to neuropathy and was losing his eyesight, so basically had little quality of life. When he was hospitalized with pneumonia, the hospitalist (who was formerly his personal physician) told my sister that they could cure the pneumonia but not everything else that was going on with our father medically....and that we would have to make a decision sometime about what/how much to do to prolong his life. Along with our third sister, we decided to discontinue dialysis and move him from the hospital to a hospice facility. We had some precious moments with him in his final ten days. So my point is that quality of life is likely to be a major factor in the decision(s) you make now and in the future.
I have posted before about the diet that needs to be followed. I'm not a natural cook, but hubby was. I finally asked the dietitian about meals that I could get that were prepared. Mom's Meals make meals for medically needy people. My husband liked their meals and now we have them come weekly. Just heat and eat. What a life saver for ME. Helped cut down on the caregiver burnout. I'm sorry I didn't find out about Mom's Meals earlier. I strongly suggest that anyone who doesn't like cooking special meals check out this site. They have many "special meal" plans. Hubby has early morning dialysis, eats "brunch" when he gets home and then goes to bed. Sleeps most of the day and is too tired to do anything else. I never plan on doing anything else on a dialysis day.
My stepfather was on it for 7 years, first at home, that was a disaster as he was deaf and if the thing went off he couldn't hear it, his wife probably didn't sleep for a year.
Then he went to a clinic for it, 3 days a week, took about 4 hours each time.
His health continued to decline, he needed a shunt put in for a heart issue, he had bladder cancer and more.
The man was miserable, in pain, back and forth to the hospital for kidney/cancer related issues.
A lot more to the story, he died during COVID so when he was in rehab we were not allowed to see him, he was deaf and scared.
Finally I bought a huge white board and my brother and I stood outside of his room, in the bushes, security came out and said if you don't leave I will call the sheriff. Me, I said fine I will sue your company. We are NOT leaving.
Finally an administrator was put in his room with him and I asked him 10 questions to determine if he was of sound mind, he was.
The final question "Do you want to stop dialysis"? The answer was yes, finally the dialysis ended, he died 24 hours later, it was a blessing. He was 91 years old, basically dialysis kept him alive, but he had no quality of life.
After he died and we got his stuff there was a sign there that he had written "Call 911, I am being held against my will and being tortured". Why?
Because the doctors kept sending him to dialysis, while fighting cancer, and being deaf he could not properly communicate with the staff, they all had full face shields on so he could not read their lips and they basically ignored them.
Yes, we had his DPOA. but he was of sound mind. We knew the pain was due to the cancer, no one would listen to us.
After he died the doctor who came to the AL said "I didn't know he was that sick"? Give me a break, we kept telling you that he was, you wouldn't listen.
Still upsets me today, we all went through so much and the medical community only cared about making money, the year he died, Medicare paid out 3 million dollars to keep him alive.
- What factors are making this decision difficult?
- Does he understand he needs it and what it entails? Would he be compliant with the dialysis?
- Who would be driving him, staying with him during dialysis? Is the nearest dialysis center in reasonable proximity?
- Does he have other health issues?
- Are you his MPoA?
Per your profile, you have a lot on your plate already if you are his main/only caregiver...
Please discuss options with the doctor and with Hospice.
Depending on the stage of Kidney Disease would depend on the life expectancy if he deicides to discontinue dialysis.
If dad is fully cognizant he and you and any caregiver should be made fully aware of the process that he will go though.
Hospice can help with symptoms and pain management.
Will he sit still for 3 or so hours and not try to get up or pull out lines? That could be deadly.
Did you ask about side effects post dialysis?
What decisions will be made if he goes on hospice?
He most likely never be a transplant candidate. At this time you might want to get a hospice consult to balance the decision making
Are you and him ready for that?
From: ElizabethAR37
I'm 86 and competent (at least as far as I know). FWIW, if I could still participate in making a choice, I likely would refuse dialysis and elect hospice/palliative care were I in the elder's position here. From what I've read/heard, the dialysis process is physically draining for the patient and time consuming. Frankly, I'm too old for that!
Improve symptoms & quality of life?
Extend life?
Please get all the info on what it takes to be compliant with the food and water restrictions when on dialysis. There is a lot to adjust to. Who does the cooking? You can talk with the dietitian at a dialysis center. Get all the info you can and see if he is able and willing to follow the recommendations. Wishing you the best.
P.S. I am an RN and take care of dialysis patients (as well as other types of patients) in a hospital.
We asked if there were any alternatives. The doctors said we could possibly reverse it if we could RADICALLY change his diet. So we met with a kidney specialist and still currently meeting by Zoom with a dietician every month who specializes in this area. By completing changing his diet, eliminating all meat protein, as well as eggs, dairy, and as much potassium as possible (which is very hard on the kidneys), we were able to bring his labs back into range and eliminate the need for dialysis. While I realize this is not possible for everyone, it is worth discussing with his doctors. It isn't easy because of the labor-intensive food preparation (which falls on me). I follow the diet with him to support his efforts. We have to eat extra plant protein and take calcium supplements. If you had told me six months ago it is possible to reverse the need for dialysis just by changing diet, I never would have believed you. But I believe now!! I am also praising God for this turn of events as neither of us was ready to lose him to this disease. The doctors were amazed and say if we can stay on the diet, the prognosis looks good. Best wishes to you both!!
Then he went to a clinic for it, 3 days a week, took about 4 hours each time.
His health continued to decline, he needed a shunt put in for a heart issue, he had bladder cancer and more.
The man was miserable, in pain, back and forth to the hospital for kidney/cancer related issues.
A lot more to the story, he died during COVID so when he was in rehab we were not allowed to see him, he was deaf and scared.
Finally I bought a huge white board and my brother and I stood outside of his room, in the bushes, security came out and said if you don't leave I will call the sheriff. Me, I said fine I will sue your company. We are NOT leaving.
Finally an administrator was put in his room with him and I asked him 10 questions to determine if he was of sound mind, he was.
The final question "Do you want to stop dialysis"? The answer was yes, finally the dialysis ended, he died 24 hours later, it was a blessing. He was 91 years old, basically dialysis kept him alive, but he had no quality of life.
After he died and we got his stuff there was a sign there that he had written "Call 911, I am being held against my will and being tortured". Why?
Because the doctors kept sending him to dialysis, while fighting cancer, and being deaf he could not properly communicate with the staff, they all had full face shields on so he could not read their lips and they basically ignored them.
Yes, we had his DPOA. but he was of sound mind. We knew the pain was due to the cancer, no one would listen to us.
After he died the doctor who came to the AL said "I didn't know he was that sick"? Give me a break, we kept telling you that he was, you wouldn't listen.
Still upsets me today, we all went through so much and the medical community only cared about making money, the year he died, Medicare paid out 3 million dollars to keep him alive.