15 years ago, my mom had a massive stroke at 60yrs old leaving her paralyzed on one side. After 9 months in rehab, she went home where my father has cared for her. An aide came in about 2 days a week. Fast-forward to 2024...she had another stroke in June, went to rehab and the plan was for her to go back home and my dad would care for her. After 3 days at home, my dad realized he could no longer do it. She's incontinent and can no longer help move herself in the bed, etc. My dad is 78 and she needs to have two people move her to change her, change sheets, bathe, etc. All of us decided it was best to move her to a SNF. However, 2 months into this my mom continues to cry, state she's signing herself out, says she was forced to go there, and states she wants to die. She doesn't want to wake up, and even stated that maybe she'd roll out of bed, hit her head and be dead. She said she will refuse going to the hospital due to any infection, dehydration, etc. She is on 2 types of meds for anxiety and depression, but we feel she needs a psych evaluation. The nursing home's communication is terrible, we've had issues with aides, called the police against one for abuse, etc. We don't know what to do anymore. They gave her a dose of Ativan, but said it can't be used for long-term. There are no other options locally to move her with "better care". All she wants is to go home, but my dad can't care for her anymore. Her needs are too high. We all feel terrible. We don't have the funds for private pay. I still work full-time and have a special needs child myself. Thoughts? Suggestions?? We feel is 100% depressed. This stroke was in the frontal lobe where all decision making occurs, emotions, etc. She used to be the MOST positive person and always felt someone else was worst off than her....that "mom" is now gone. :(
Having had a second stroke, mom may indeed qualify for hospice because strokes often lead to more strokes. It doesn't hurt to ask.
Good luck to you.
You are grieving as well .
When you visit , If allowed bring her foods she likes , that is safe according to her swallowing abilities, ask speech pathologist . Bring her flowers , offer to read to her , music she may want to listen to . If her mood improves , offer to bring photo albums she can look at .
Would you want to continue to live in these circumstances?
Personally I would not. I feel that her feelings should be understood and respected. I would tell her "Mom I am so sorry. We understand you no longer wish to live. But this is not currently an option. We have to do the best we can. We know this hurts you, and it hurts us, as well".
While an anti-depressant try may help a bit, I feel your mother's feelings are rational and are being expressed. Your negating her honest feelings may be making her feel more and more despairing and desperate. This is a dreadful dreadful sentence to have to serve at the end of life, losing EVERYTHING you every had, everything you ever were. Here feelings are, imho, justified. I would have long ago done VSED (voluntarily stopping eating and drinking), and would have included my family in that decision.
I think it is time to get an MD to order a psychological or psychiatric consult and time to try and anti depressant. I have little hope that it will help, but I cannot think of anything else you can do now but allow your mother to mourn the fact she no longer has a life, but is forced to live this one.
I would just continue to try and be upbeat when you all visit and call her and make sure that someone is visiting her on a regular basis to be able to keep an eye on her care there.
If your mom is truly that miserable then I do hope and pray that the Good Lord will take her Home sooner than later.
It is hard on family to watch a loved one suffer.
My prayers and thoughts are with you.
I WOULD go to palliative care.
That means that you are not treating toward "cure" and that you understand there is little now to "treat". It means you would not do things like have tube feedings go. You would not attempt to prolong her life. You would opt for comfort care. You recognize that she is not going to "get better" and that comfort and quality of life in so far as possible is now the goal.
You can easily find explanations of Hospice care, Palliative care online.
So sorry your Mom is suffering so. This is hard for her to bear, and for you and your father also.
She was/is similar in her moving as well. She had therapy to at least stand and/or walk, but she did nothing, so they discharged her from there (she was given 2 chances).
Eventually, she got her wish to leave, cried while waiting for them to take her to the other facility. didn't like it, wanted to come back, and was denied.
I can hear her now, yelling help,, crying and banging on her bedside table.
I've asked for meds to be changed to help Dad's tears. Dr has done this.
Dad will bring what little talking he can do, back to himself. I am working at saying "we are talking about whatever, and not you for the moment.
I find bringing in flowers or an apricot crumble slice, seems to help. If I dress up a bit it helps me too.
Best wishes, but this last bit is really tough.
It's just awful.
A good distraction is to begin conversations about what kind of legacy she wants to leave. Help her plan for what will happen after. She needs this.
A good book on it is Nothing to Fear: Demistifying Death by Julie McFadden.
Some good conversations can be started on what special things she wants you or others to have, to know, to remember.
Hope this helps!!
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