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FedupinCO Asked April 2023

Caregiver burnout. Any advice?

My 97 y.o. M.I.L. has lived with us for 3.5 years. She is a terror. She lies to us, curses. My question is: She makes $1,700 mo Soc Sec. When we go for respite care we use her money. We go once per week for 3 hours. We have had 2 overnight stays. We need more. She sends her 5 great grandchildren money every month. Some $50, some $100. They all are grown, and have very good paying jobs. They never say thank you. Is it wrong for us to stop sending them money so we can hire more caregivers so we can get away from her? My husband is her power of attorney in all things. She is able to go to day programs for free, but refuses to go unless she can take her dog. She cannot live alone as she forgets to feed him. AL was chosen, but all the extra services she would need would banckrupt both of us. Your honest advice is welcomed. She is low maintenance at home, but depends on us for her food, transportation. She causes us so much anguish. She is extremely opinated, and doesn 't care who she hurts. She has us hostage in our own home... Seems she has more rights than we do. Help.

southiebella May 2023
Deary me I'm in the same boat so I totally get where you're coming from. My 96 year old mother has lived with me since November 2017 when it became unsafe for her to continue to live alone. Years prior to that she had pleaded with me to never put her into a "nursing home" and I agreed without counting the cost. So here we are.

I've been caring for her in some form or fashion for 17 years, and as the duties have increased, my life has decreased. I almost have nothing left of my former self - my job, interests, hobbies, friends...all gone now. Some drifted away and others had to be put aside because I have no time to devote to them.

I'm also a hostage in my home unless a sitter is here - I now have 3 who come on various days for a few hours. I use my mother's SS income to pay them. Even with 3 sitters, I'm a prisoner in my own home most of the time. If I even walk out into the yard, I have to take an alarm with me in case she gets up from her chair or bed. It's like being on a leash 24/7.

The "please" and "thank you" are very uncommon. My mother has always had an attitude of sarcasm or "snarkiness" and it triggers the heck out of me.

To answer your question, yes, I think that you should use the amount of her money that you need to pay for more caregiver/sitters. You're doing all of the caregiving work so make no apologies and accept no false guilt.

Peace
betskand May 2023
Oh southie...your situation breaks my heart to hear about. I DO SO know that feeling of being a hostage and also of losing everything in my life: friends, health, even a tooth (which I don't have time to get replaced), exercise time such as long walks with a friend...my husband (93) seems to get physically stronger every day, but I feel as though I am 103 (I am actually 73). I just read a chapter in Sherwin Nuland's book, "How We Die," and (without specifically referring to caregivers) he points out that our vital left ventricles lose micro-patches of muscle with stress and hypertension. So the whole situation is killing US while it is keeping alive people whose loss of capabilities and understanding really should allow them to go.

Recently my hubby had a medical procedure done at the hospital (outpatient). It took about 3 hours of getting ready, waiting, and having the procedure. He was so nasty and demanding to EVERYONE that I felt I had to go around and apologize afterward. One nurse who helped with the procedure came to get me when he was ready to be rolled out to the car. He said, "Are you the primary caretaker?" I said, surprised, "Yes. How did you know?" He said kindly "You look like it," meaning that I looked exhausted, ground down, sad and despairing, I think. He said he and his sister had the same situation with their father. They could not be with him (both nurses), could not afford official home helpers or assisted living. Finally they found through a friend a young woman and her sister who were immigrants from Central America, intelligent and caring. Latin Americans have much more of a culture of families staying together and taking care of the elderly, and she had already taken care of her own mother and father. They moved in with the nurses and took care of the father for 7 years, until he died. He said they became like sisters to him and cost much less than official home helpers or assisted living. I live in a place with a lot of immigrants and am asking around trying to find such an experienced and trustworthy person who has taken care of someone here until he or she died. We can't possibly afford more than 2 years of assisted living or helper companies, and I don't think hubby will die that quickly, although I well may.

Nice to see your face always. You are indeed bella.
MargaretMcKen Apr 2023
My first suggestion would be to write to the 5 descendants she sends money to, and say that her own care needs more funds than are available. Explain that DH has POA and needs to stop sending the money so that it can be used for better and more appropriate care. Ask them to let you know (with details) if this will cause serious difficulties for them.

Than stop it!
FedupinCO Apr 2023
Thank you for responding. My concern is it legal to decide for her?

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Patathome01 May 2023
Your MIL should stop sending money to her family and use it for her care. It's your house, with your rules, so do something to avoid burnout. You know, she could outlive you and require a facility anyway, so save yourself by moving her out to one now.

InFamilyService May 2023
Stop sending money to her great grandchildren. We found out aunt ,94, was sending money to all kinds of charities and churches. Put a stop to that. That money should be spent on caregivers for her giving you a break, much needed. Caregivers can also prepare simple meals for her.

Try to put up some boundaries and set a schedule that suits you for doctor appointments. My parents about killed me running both of them each week to various doctors.

Please take her poor dog away and get him well cared for. He is a helpless animal and does not deserve to suffer with hunger. If she lives with you I hope some one takes responsibility for the pet.

Do not allow her to be so demanding and run your house.

Justretired99 May 2023
Honest opinion, the dog has to go (find a good home), you don’t need any extra responsibilities, stop sending money to GG kids. Sounds like your MIL is on Medicaid since she can go to programs for free. Tell her she is going to the program, this will give her the opportunity to get out of the house, meet new people and most of all give you and your husband a break. She will be given breakfast and lunch while you are doing whatever you need to do while she is gone. Medicaid also provides a few hours a week a home health aid. Check to see if your MIL is eligible for EBT (food stamps), every little bit helps.

She needs to be on a schedule that doesn’t include you and your husband constantly doing for her.

Try to limit your time around your MIL. This doesn’t give her the opportunity to give her opinion or hurt your feelings.

You and your husband are letting her control your home and make you feel like hostages. Stop it. Take control.
Jennycap May 2023
Agree.
EstherBernard May 2023
Absolutely, it is legal for you to decide for her.

Taarna May 2023
Stop paying the "kids" - they don't need it and don't appreciate it. Use the money to hire more help. Get the respite you need.

Since MIL has a difficult personality, consider getting her help from a psychiatrist - geriatric specialty preferred. Also read any of the "boundary books" by Cloud and Townsend to create a plan for dealing with her problem behaviors.
Jennycap May 2023
agree - they need to take over all control of finances.
gardener3 May 2023
I hope your husband has both medical poa and financial which is durable poa. With these you have every reason to make all decisions. With Medicaid there are home services which may not cost anything. Taking back control will be so positive for all of you. Hire what you need. I use Alpha one for free caregivers. Take advantage of all services you can. You need to out live MIL.

rlynn123 May 2023
Hello. I can empathize as so many people on this forum can as well, with caregiver stress. I had a mess of stress taking care of my mom for 5 years, when she had Alzheimer’s. My mom tried a local adult activity center for 1 or 2 times, but she didn’t like being around the “old people.” (She was 89 at the time, and made it to 94). She’d also curse at Hubby and me, mostly me, over nothing. I had to remind myself that it was the disease talking. The following things helped me keep stress under control: I’d go for a walk, when it was reasonable and feasible. Hubby would look after my mom, and I’d either walk by myself, or with a friend in the neighborhood. I found that the walking and talking (if I were walking with my friend), was very therapeutic. I also found writing to be therapeutic and cathartic. I wrote down funny things that happened during my caregiving journey, like when my mom wanted to tell someone that she had pounded the pavement, looking for an accounting job in NY after college, but what she said was, “I walked the streets of NY, if you know what I mean.” My mom might have been a sweet talker, but she wasn’t a street walker. These musings became a book: “My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale.” (I thought of the title when I was driving home from work one day, and I realized that my once broad life was reduced to the pressing health concerns of my mom and dog.) I’d also watch TV at night, after my mom was safely in bed. Of course, I had to carve out time for the essentials in life: laundry, dishes, answering emails, etc., but I also dedicated some time to watching TV shows that I liked. Between real friends and the “Friends” TV show, I made it through. I hope the friends on this forum help you too.

dkiely33 May 2023
" They all are grown, and have very good paying jobs. They never say thank you..... Is it wrong for us to stop sending them money so we can hire more caregivers so we can get away from her?"
------------------------------------------------

NO!!! It is not wrong! You don't need anyone's approval to make sure her money goes to her care and grown adults do not need an allowance. Since your husband is POA can you make a plan with him to stop paying all the grandkids? He should be very involved, it's his mom.

One other tip: stop having so much vitriol/ hatred towards your MIL. She can't help her condition and she's not doing this on purpose. Yes, you need a break from caregiving but she also deserves to be cared for by people who do not resent her.... and you sound like you hate her.
ventingisback May 2023
I don’t get the impression OP hates her MIL. I think OP is just honestly describing MIL’s personality.

I do get the impression that you, dkiely, luckily most likely care for a loving, appreciative mother. I hope so. Also, your mother lives alone, so you’re not dealing with her every minute in your home.

I think you’ve never cared for a mean person. And yes actually, some mean people can control themselves, but purposefully hurt others.
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