Confused and Concerned

[JV20189765]

Hello. I’m looking for advice and help for my mother in law. Last year, she was diagnosed with Renal failure. She did dialysis for several months and then stopped. She said she felt fine and didn’t need it. She was doing well until 2 months ago. She started to get very tired and exhausted. She couldn’t get up the stairs very easily anymore. She had to stop half way through. She stayed in bed for 3 days before she finally agreed to go to the hospital. They determined she had pneumonia and was in the end stage of renal failure. She agreed to do a few rounds of dialysis to get some fluid off but wouldn’t do more. The doctors basically told her if she didn’t agree to do more, she would be dead soon. Well, we’re 1 month out from her being in the hospital and she’s really not doing well. She can no longer get up the stairs without sitting and resting several times. It takes about 30 minutes to get up 15 stairs. She refuses to move her bedroom downstairs and there is no way to convincer her otherwise. She hasn’t eaten in 2 days. She’s had diarrhea and is exhausted. She walks 5 feet and has to stop. She also has had heart failure and 2 heart attacks and is diabetic. Dialysis is out of the question. She will not do it. So, what I’m wondering is, are we at the end? Are we looking at her choosing to die? How can we help, what can we do? It’s very difficult. Thanks you for any help and support.

[Jayhawker]

Some people with end stage renal failure do choose to deny treatment. Instead they choose palliative care.

If your mother-in-law has chosen to deny treatment you might talk with her and her doctors about palliative care options in your area.

However, has she talked at all about why she no longer wishes to receive dialysis? There may be changes that could be made in a dialysis treatment plan for her.

But ultimately, it is her choice as to whether she will choose treatment or palliative care. I still remember my mother, who had been battling colorectal cancer, saying to me as she decided to pursue no further treatment, “This is no way to live.”

Of course I honored my mother’s decision. The goal at that point was to keep her comfortable and enjoy the time we had left as she received palliative care. Of course, this is never an easy situation for anyone involved.

Jayhawker

[EchoMax1012]

It sounds like she has made her decision to not engage in any more medical therapy, and is at the very last stages of her life. I think she has a right to do this, and the best you can do, if this is true, is to support her through to the end. I know it is very difficult to do, and my best thoughts are sent to you and her.

[KidneyCoach NKF Ambassador]

May I add that the "feeling crummy from kidney failure is a gradual effect. Oftentimes you don't realize how very ill you are until you feel better. She has gone a month without dialysis so yes I'd imagine she has symptoms from headaches, shortness of breath to foggy brain. By now her gut is trying to get rid of toxins (diarrhea) as the bowel is the largest transporter for potassium. Her vision and cognitive thinking may be off as well.

Has she had any opportunity to discuss this with you? Her clinic, social worker, nephrologist should have reached out and discussed how they can help her feel better with palliative care like maybe one session of dialysis per week for fluid removal only to alleviate shortness of breath. Is she still taking all of her prescribed meds. There are options in making her feel comfortable without dialysis.

Request a home visit with a clinic nurse and social worker to address your mother's and your concerns. Is she open to speaking or listening to others?

Due to machine or access issues (I am a home dialysis patient) there have been times I've gone 5-6 days without dialysis. I feel poorly but because it's a gradual cumulative effect I often won't realize how badly I felt until 2 hours or so into a dialysis treatment. Then I begin to realize just how icky I had been.

You are kind and I'm sure this is hard to watch. Remember fear, depression and denial are major players in her choices all of which are valid.

In the meantime please take good care of yourself. You come first. You can't help your mom if your sick or not getting enough rest, exercise and eat well.

Let us know how things are.

Many Blessings