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???
I 🤔 think she needs convincing, let’s try it see how this can assist you.
Do you have any POA Medical , or does mother still in-charge of her own decisions. Mother is miss attention and this might be her way of receiving it .
possible she requires activities, new reading books, word search . Does nursing home have arts craft, bingo, ect . To assist. Converse with Social Worker they are full of suggestions and assistance with anything . They are your go between. What you need to do is pull back your visitation for a week . Don’t go every other day try one day out week .
Let her breath , you will be the one whom feeling bad . Pull yourself by bootstraps.
you will see the change . If you need to know how she During just call the unit .
it might take couple of weeks . One visit week. Then third week twice week not back to back . Suggestions only .
i found out it works .
Is the Phyco. Saying she’s depress from what ,have they conversed with here. Don’t let them prescribe any anti-drugs to her. They need to find why depress , once medication on hard to stop. Medication alter brain chemistry and causes another problem .
She refusing treatment because???
Have they informed her its to help her.
you might need to converse with an Elder Law , you not even an advocate for her.
She is calling her Medical Condition situation, how did she get in Nursing Home to begin with. PCD stayed she couldn’t live alone anymore,it took two Official Medical Doctors to approve her in Medically Unstable, need Professional Medical .
Long as she incharge of her decision, and Deny treatment , they can’t force her, they tell her it’s t help her , yet she’s continue to tell them no, they try encourage her, yet she doesn’t what to do it . They just record it in her records denied treatment today . You can’t even ask to see Medical Records because she making all her decisions.
You need to try let go for that week one day visitation only .Don’t argue with her telling her what to do, you will see the difference. Stay calm , speak calm a whole different change . It’s her decision, it might not be yours see the change .
God Bless
Respectfully
Brown Sugar signing off
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."
THIS IS BY FAR THE VERY BEST RESPONSE I HAVE READ. YOU NAILED IT.
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.
"Just depressed" is a pretty significant comment from the psych staff; did they have any suggestions? As a person who was clinically depressed at one time in my life, I am well aware that anti-depressant pills can be very helpful, but talk therapy is needed as well. There is no magic pill that will "cure" a person's depression. The right medication can, however, lift one's spirits enough so that they might be willing and able to talk about what's happening in their life and to work towards some solutions. Perhaps you could meet with the psych staff for some guidance here.
You posted your question hoping to find a way to handle this. Sometimes gratitude and acceptance is the best we can do. You can be grateful that you had (hopefully) many good years with a loving mom, and that she's in a place where she's getting good care. You can try to accept that this is how she wants things to be, even if it goes against her recovery. It seems that she wants the treatments she wants and nothing else; perhaps she wants to sleep so much of the time to escape her reality. In her situation, I'd want to sleep too.
It is so hard to watch someone go downhill, mostly because of her own actions. We all wish you the very best as you go through this very sad situation with your mom. Be sure to take care of yourself in the meantime, and this means "Don't feel guilty!" You're certainly doing the best you can.
Our mother has dementia and has been in MC for over 3.5 years now. She just had what is likely a TIA yesterday. She refused transport to the hospital, so they called me. I told them to take her for testing IF they can get her to agree (even with dementia, they can't take her if she refuses!), but no hospitalization. I also said I would like to talk about this with YB, which I did and he agreed. In mom's case, she just turned 97, has little or no hearing, was being treated for Mac Deg (I cancelled the next appt in Oct and future ones - too much for her now!), refusing to stand/walk without major assistance for months now, and high BP (long time, takes meds.) At this point, I see no benefit to testing and do not think she would do well being in a hospital. Could they give her meds to try to ward off future TIAs or a stroke? Sure, but to what purpose?
I fully expected something like this to happen long before now. She is overweight, med records show enlarged heart (not recent!) and with high BP and no activity (her choice - they've tried to keep her active!), it would happen sooner or later. Last real visits, she was living about 40+ years ago. Other than reading (over and over) and esp sales flyers, she has little to no life at this point. It would, in some way, be a blessing if she could go in her sleep!
Your mother isn't nearly as old, but if she continues to refuse some or all treatments, it is her choice. There isn't a lot you can do other than be supportive. Working with staff, perhaps they could get her evaluated better to fine tune the medication(s) for depression and anxiety. Not all meds work with all people. If what she is taking isn't helping, something else might work better. Otherwise, sympathies to you. Do not feel like you are failing her and certainly don't hang on to any guilt. These are her decisions.
A POA must be GRANTED by the person, and given what we have been told, it doesn't sound like this woman would grant anything.
Since the mother is still competent, guardianship is out of the question as well. The courts won't likely grant that when someone is considered competent.
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.
My mother had a fall and hip replacement and was out of commission for several weeks. She paid all the bills and finances for my parents after Dad's stroke. It took us a week to find out where she had hid her checkbook!
After that I convinced them to appoint a POA so someone else had access to to pay bills. It doesn't have to be a family member. An attorney or accountant can be appointed.
Also, a Medical POA is needed to make medical decisions, make sure you discuss your mom's wishes, write it down, and send copies to all relatives who might feel they have a right to n opinion on the topic.
And, the POA needs to be signed BEFORE someone is unconscious or unfit. Otherwise it's too late and a guardianship will be needed and guardianship are expensive and difficult to obtain.
If you cannot get the forms signed and she continues to decline care, let her know that her medical care might end up being totally out of your hands should she not be able to tell them what she wants.
"just depressed" seems to simplify her situation. She is depressed. Have they given her any meds to help with the depression. Have you had anyone else in the family ask her about how she wants her health handled? Maybe it's just hard for her to have the discussion with you.
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
But pills aren't going to fix her depression.
She will be depressed and probably will die within 6 months in a Care Center if she can't have family visit. Prayers.
The best scenario would be for her to live with you and having her dialis done in your home.
There have been great strides in producing better antidepressants providing more options than were in the past.
These medications do work imo. No doubt this poor woman’s entire life changed in 10 months. I would probably be depressed as well.
But with time may come acceptance of her own health conditions and she may improve. Every option should be explored.
If mom refuses that’s her prerogative.
Daughter please don’t feel guilty about it either; you are doing the best that you can under the circumstances.
It’s up to mom to make decisions with her health but I would support her and discuss her care with her physicians & at least try an antidepressant.
For the daughter to take her home and provide dialysis is way too much for the daughter. We’re talking needles, blood and infectious waste in the daughters home. I don’t even think at this point mother is stable on dialysis & needs staff supervision. It wouldn’t be safe to dialyze her at home. Someone needs to be present the entire dialysis treatment.
It will take a huge commitment by the daughter to assume the responsibility of putting her mom on dialysis, monitoring her throughout and then taking her off the machine. It would quickly cause CG burnout. It is not for everyone and takes months of training. Daughter should not take on that responsibility.
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.
I have to wonder if she is giving up but is afraid to say. Is a therapist available for her to talk with?
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?
That in itself is enough to be depressing for her. js
Being in a Nursing Home at such a young age and dialysis on top of it can be very depressing for her. A lot of people don't understand the severity of it.
Have you ever heard how bad "stress" is to your health? It is a silent killer.
Just curious if she really has to be in a nursing home? If not, it could be a start in helping her if she could go elsewhere. No harm meant here .
You and your mom are thought of.
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.