Mom (88-years-old, widow for 40+ years) has been on Hospice for 18 months. Recently, Hospice required 24/7 care. I set it up then mom “terminated” them because she didn’t need that and doesn’t want anyone in her space. Hospice continued to care with the notation that mom was not following required protocols. Two weeks later, she called and thinks she has a blocked intestine. Mom wants to go to ER for pain, Hospice nurse thinks that is wise. If they treat the symptoms and send her home, nothing changes with Hospice. The ER did a CT scan, so mom had to come off Hospice. Mom was diagnosed with a UTI, sent home with antibiotics. Hospice called and won’t reinstate her without 24/7 care. Last night mom was up with diarrhea and vomiting at least 3 times, I didn’t do anything, but I was there if she needed me. I need help getting a very hardheaded, independent lady to see that she has very few choices and one is no longer to stay in her condo by herself. What if that is what she decides? How do I deal/cope with that? Before she became this ill, I had researched and visited assisted living places, but she never would make a move. I live 3 hours away. Our relationship has always been good, but I am starting to feel bitter and hurt that she only wants what she wants. I get that, I just don’t think that is the option, but I know she will not see it that way. Mom is still very mentally competent. She has little to no money, so that is a driving force behind a lot of her decision making. My brother and I can assist a little. I am full of anxiety, fear, sadness and just want my life to go back “to the way it was" then I feel guilty. I am at a loss on how to proceed. Thank you for your wise words.
She has a few options.
1. She has a caregiver 24/7 and remains at home.
(From your profile It does not sound like she needs a "medical" caregiver a "companion" might be all that Hospice would require. (You did not give details about why Hospice thought she needed 24/7 care)
2. She moves to Assisted Living and continues with Hospice in the AL facility. She would have help when she needs it but can be as independent as she can be.
3. She does not get a caregiver or companion. She remains off Hospice. When she needs emergency medical care SHE calls 911 and goes to the ER.
YOU and your brother stop "helping" her so that she realizes that she is not as independent as she thinks she is.
I only wish I had found this Forum sooner where I learned that , so long as they were competent to make their own ( poor ) decisions , you are not responsible . And it’s Ok to leave them be .
You give Mom her options .
Hospice with 24/7 or a facility .
If she refuses and stays in her home …
You let Mom know what you are willing and able to do to help ( if any ) . You don’t have to do anything . At any time You can tell her you have responsibilities of your own and go home .
If she is home alone , that’s on her.
I’m getting much more used to accepting the elderly’s “ right to rot” in their own homes without feeling responsible for them .
I’m on parent number 4 ( between DH and myself) . Bent over backwards for the first 3 . Two had dementia so we did step in to place them . This last one though , is competent , struggling at home , refuses a facility or hire home care . We can’t help her she’s 4 hours away . She doesn’t ask us for help so far . Her “ right to rot “.
or
Tell her it’s hospice 24/7 in her home or she had to go to a nursing home (unsafe discharge from the next ER visit) or inpatient hospice.
or
Let her go out how she wants which is to die at home by herself. Ask her if that is what she wants. No ER visits for pain.
I decided to just let them be and let nature take its course. Oh, I did help knowing they no longer could drive. Finally I set boundaries which I should have done years earlier, and finally learned to say "no, I cannot possible do that". Easier said then done, I got that "hair on fire" look from my Mom. Hey, I was a senior citizen, too, but in their eyes I still that young daughter who was in her 30's.
Then comes the phone call where someone had fallen and is hurt. Call to 911, hospitalization, rehab, and returns back home without the parent learning anything from this adventure. Then comes another panic phone call, this time more serious. Then and only then was my Mom placed into a nursing home. Dad moved to senior living.
My mom has a degenerative back.
Lives alone, brother is POA and supports this. But I get all the calls and do all the appointments.
How do I handle it. This is not the best week to ask me that. I have a lot of worry, but I do know, sence joining this forum and realizing a lot and being more informed about everything, has helped tremendously.
I back off for a few days at a time, try to think of the good things in my life and try not to worry. Some days are better than others.
The thing is, we have to realize that no matter what we are internalizing, this is there right. " Right to rot" as someone said. And to be honest I want my rights to live or die when I'm at that place also.
Another thing is we did not make are parents old, it's nature and it sucks , I suspect mom is probably going to have a fall, sooner or later. Worrying about that is only going to make me ill. Why should I worry myself sick because she chose this. I didn't. If it was up to me, I would sell the house and move her into a nice AL but giving up her home is completely not in her realm of thinking.
So I have to let it go. Some days are better than others. I say to myself yesterday was a good day, today not so good. But I know Ill have a good day soon. And I hold on to those good days.
I'd say get yourself a therapist, possibly an anti anxiety meds. Because this can be a long haul. Read this forum as much as you can and join in when ever you want. It has all helped me a lot.