My mom is 57 years old and her colon burst last December, she went septic. She had a colostomy bag for 6 months. She has been on dialysis since January and has been in a nursing home. She will have to remain on dialysis for the rest of her life. She was starting to do better until she had her surgery to put her bowels back together a couple months ago. It's been downhill since then and the doctors can't figure out why, her labs are normal (for her). She wants to sleep 24/7, she is extremely difficult to wake up. She is completely incontinent now. She refuses dialysis or comes off her dialysis early almost every session. She has been in and out of the hospital 3 times just since her most recent surgery to reattach everything. I feel like she is spiraling and is miserable every single day, especially since Covid means I can barely visit her. Her nurses and doctors and I keep asking her if she wants to give up, each time she FIRMLY states she wants to live. She always has an excuse as to why she can't do this or that- she had to come off dialysis early yesterday because she was anxious (she is given xanax before every session in order to aid with this). Last week, she refused a session because she wanted to eat first (she took an hour to eat one cheese sandwich). She has been evaluated by psych and they say she is just depressed. She fully understands what happens when she misses dialysis, yet she still misses it and insists she wants to live. I am not sure what to do. POA would be a battle because she has clear days where she is fine! As of now, she is still her own POA. The nursing home staff says she is hospice appropriate, but she refuses to even talk to anyone with hospice. How in the world do I handle a situation like this???
This also meant that he was let go from work after a year. He was on dialysis for 5 years. He was very depressed and on medication, although no one ever changed or updated it. He had plans to stop dialysis this past January after we reached our 50th anniversary, but he passed away in November from unrelated issues. But when asked by palliative care, he wanted to live until our anniversary but did not want to continue dialysis. So it's a mixed bag of emotions.
One thing that stood out in your comments is that your mother gets her Xanax right before dialysis. My husband was always told not to take his meds, all 8 of his morning ones, prior to dialysis as they would be cleaned out during the procedure. His dialysis started at 6 a.m. so that might have been the reason also. Up until the last 6 months of his life, I was still working and he took himself to dialysis and I know that I was not always, if seldom, given all or the correct information.
Although we had talked to hospice 3 years prior and because the kidneys did not cause his death, I don't remember what exactly we discussed, but it may be that dialysis is not given once one is placed on hospice. My husband always wanted me to tell him when it was time to stop and I always told him that it was not my decision. I didn't have to live with the severe pain of his arthritis, crushed discs, inability to walk very far (he would not use the scooter), and the isolation of not working. But I supported whatever decision he would make.
When he was hospitalized with intestinal hemorrhaging, I did make the decision that he would have no surgery. Luckily he had the same doctor at the hospital who had treated him through the aftermath of the heart surgery and agreed with me. We had talked enough for me to know that he wanted no surgeries. My husband also made a Durable DNR over 4 years ago.
I empathize with you and understand how unsettling and stressful this can be. My husband's timeline and bucket list kept changing over the course of several years and I eventually decided that I couldn't do anything about it and we would face the end when he finally made a decision. In the end, I made the decision.
I know that this was lengthy and probably of no help to you, but it has helped me. I wish you peace and a strong heart. It is a tough decision for your mother to make, especially being so young.
I see some similarities in our respective experiences with our husbands. Especially the part about the bucket list. We still have things we'd like to do, but I know deep down that we never will. The hardest part is that my husband will never get to see his brother again who lives abroad.
So, thank you for sharing. It really touched my heart.
My mother would sleep as long as 24-30 HOURS when given a very small dose of Xanax. Have you asked for a trial of some other medication?
The Covid complication is TERRIBLE. Could you get in touch with whoever handles her psychiatric medication by phone?
In the meantime, for your peace of mind realize that you can lead a horse to water but you cannot make her drink - you can drown her trying, but you cannot make her drink! Your mom has to make decisions for herself, and frustrating as it may be for you, you have to accept that you cannot force her to make the same (right) decisions you would make. When you ask her if she wants to live, she may just be giving the answer she thinks is the right one, or she may be answering honestly but not know how to dig her way out of depression. Either way, you can only do the best you can and accept that she is making poor decisions, but they are hers.
Is there anything that will help her want to keep living? For my mother her will to live comes in sharing time with her great grandsons. Maybe if you can find something that sparks her, she will take better care of herself. However, if she is very depressed even that may not work.
Know that you are doing the best you can, and maybe talk to someone yourself so that you have support in accepting what is happening. Hospice and/or palliative care often offer help to family members
Your reply is refreshing. Like opening a door into a totally different place, into a garden instead of grey walls.
Quality of life over quantity is something really worthwhile to think about.
This depression, and all of this, would not be abnormal. What did the psyc crew suggest to address the depression?
She is making her own decisions and it does sound as though every effort is being made to suggest things that might help. Other than to wish you good luck I can't imagine a way out of this spiral. She has been through so much.
Mom will have to make her own decisions now; you will have to allow her to do so.
I have to wonder if she is giving up but is afraid to say. Is a therapist available for her to talk with?
She is depressed and who wouldn’t be? I’m 60 and I can’t imagine. Depressed people aren’t logical. I can’t believe they aren’t addressing the depression. I would think she would fight for her life if she wasn’t depressed. To me, that needs to be addressed first which means therapy.
They always want you to go with hospice or palliative care. My Mom would be dead right now several times if I did what they recommended.
I fought for her, and I have her at home with care.
If you don’t want to lose your Mom at such a young age, you need to fight and advocate for her.
Can you get her to her primary physician who knows her? Or call them and tell them what’s going on?
It gets tricky when they are in a nursing home because they have their own house doctor etc. but I can assure you they won’t fight for her.
And with her being depressed, it’s going to be up to her family to fight for her until she can get her fight back.
Maybe that isn’t possible. Obviously, I don’t know her but you do. If you could get her home with care, that would be best. But that’s takes money and time. That also might not be possible for you. I just hate for you to lose your Mom at such a young age.
Its really terrible that they just release people from the hospital to a nursing home without treating the whole patient.
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