My mom had a stroke a few years ago that left her permanently disabled. She has severe aphasia and mobility issues, compounded by depression because her life does really suck.
From very early on, I knew I couldn't be a caregiver long-term. I hated everything about it. Which was unfortunate, because my dad and sister were convinced that the only responsible thing is to spend the rest of our lives hovering over Mom 24/7. I tried to explain caregiver burnout, talked about bringing in outside help, was told I was a horrible daughter, and my sister took over as my mom's primary caregiver. Fine by me.
Sure enough, 6 months later my sister was nearing a breakdown...and she still wouldn't listen. She's continued on this course for nearly a decade now, regularly tells me how much she hates her life, and still devotes her life completely to taking care of Mom. Pre-COVID, I was begging her to send Mom to an adult daycare facility so Mom could get out of the house and my sister could rest. "But what if they don't take care of her? What if they can't understand her?" And so it went.
This all came to a head when she had another stroke a few months ago. Since then, my father and sister have spent Every. Single. Day. in the hospital with her. Every day! They call me, wanting to know which 'shift' I can take. Why can't I do more during the weekdays? Can't I come after work? I had to put my foot down immediately at the start and say that NO ONE was doing overnight stays with her even if the hospital allowed it - it wasn't necessary, it wasn't healthy, it was going to keep her from actually sleeping.
What are we doing during our time with her? Well, for the past three months, we were basically watching her empty, semi-vegetative shell twitch around on the bed for 9 hours at a time. Now she's more awake, and so it's just...sitting with her. For hours. While she watches TV and sometimes is aware that we're in the room.
My father and sister claim it's not "safe" to leave her alone for long periods, IN A HOSPITAL. The hospital that saved her life and installed a feeding tube in her and has been actually keeping her alive. I'm going to admit that I've lost a lot of perspective on what is normal vs. what is their desperate, guilty need to constantly hover over Mom, but this strikes me as totally nuts.
Anyone else deal with a similar situation? Anyone successfully convince the family to actually accept help?
1. No one can take care of -------------as well as I can. (Or another family member.)
2. Asking for help in caring for ------- means admitting that you can not handle it.
3. Getting an "outsider" in to care for---------is an invasion of privacy. (it is to some degree)
4. I can't trust someone else because------(insert reasons not covered by above)
5. It is my "duty, obligation" to care for ----------.
6. I will feel guilty if I have someone else care for --------.
7. -----------does not want anyone in the house taking care of them.
8---------(spouse, sibling, and anyone else that has any input) does not want anyone in the house taking care of ---------.
9. It is going to cost to much, we need to save so you can inherit----------. (My logic is they saved for their "old age" this is it spend what you have saved on the best care you can afford)
Lots of excuses and reasons.
The reality is Caregiver Burnout is REAL.
Accept the fact also that some people are NOT cut out to be caregivers. They are typically ones that take on the role of Care Manager.
The important thing is SAFETY.
If it is not safe for the one you are caring for or for you or any other family member then it is important to get help or begin the process of looking for a facility that will meet their needs. That could be anything from Assisted Living, Skilled Nursing Care to Memory Care.
Safety is not just physical safety it is mental, emotional safety as well.
Generally the first step is getting paid caregivers to come in and help. With anything from Direct Care to help around the house. Light housecleaning, laundry, meal prep and or making meals would be included in these duties.
Know what you can do, what you can handle. BOUNDARIES....
I would qualify as a reluctant caregiver. I'm almost 30 and I've helped my mom to some degree since I graduated high school. I did graduate from college, but graduating college was my peak. I was never interested in caregiving duties from the very beginning, but ultimately, I happen to be in the nest when my mom started needing extra help and she put it all on me.
I'm suffering from burnout. I'm not getting any younger. I'm not going to get back any of the moments that were lost to caregiving. I'm tired of helping her. And that extra help might be coming sooner rather than later if this goes on. I'm almost ready to tell her "screw it, you're getting extra help." One day, she's going to need the type of help I can't provide and only professionals can.
Their dil is now head aide. She had never done a bed roll. She actually has convinced my mil, who herself uses a walker, that the two of them can just handle the push pull sheet routine to change his depends or more unrealistically get him, pivot him, to sit on the commode.
These in laws are eight figure people. They could easily afford more care if this crass sil just for one minute quit being protective of her 70k illegal salary plus her, sil, being the queen bee. FIL was the only one who even tried to stand up to her. At the moment he’s probably holding on to his no 2 in bed. She’s incapable
I never did see the necessity of sitting next to someones hospital bed 24/7. Actually, Hospitals are not visitor friendly IMO. I may do this for a very sick child or my DH (he hates hospitals and is deaf). I may stay with a parent for a while but not 24/7. We did this with my MIL. Oldest brother felt we should be there from 9 to 5. And my DH went along with it. Most of the time she was in therapy when we got there. We did leave for lunch but came back. Left at 5 because they were serving dinner. TG tablets had become popular, kept us busy. I can't imagine sitting there looking at walls. So I am with you.
Your sister and Dad chose to care for Mom. There were options they refused to take advantage of. That's not ur fault. And I think in this instance, Mom needed to be let go if a feeding tube is keeping her alive.
How old is Mom? Did she not have a Living Will or an Advance Directive? Because, depending on her age and the severity of her stroke my daughter, RN would never have recommended a feeding tube. Once inserted, its very hard to get them to remove it. The only way sometimes is by placing her on Hospice.
Yes, I think your the logical thinking one. Your sister and Dad are making decisions using there hearts.
But this is a long long term situation and they are just setting themselves up for a very stressful life of very poor quality. You do not need to do what they are doing. Decide what you think is an appropriate visitation schedule and let them know that that is what you will be doing. They won't like it, but they're going to have to accept it. Tell them - mom is stable, she is in a reputable hospital, the nurses do know what they are doing. That they need to take care of themselves too! Your suggestions will likely fall on deaf ears. Set your boundaries and stick to them. You can change your plans for yourself whenever you want, but not because they are pressuring you.
Good luck. Sorry your mom is in such bad shape. Sad.