My mother, 89, still lives at home on the second floor of a two family home. My partner and I live on the first floor. We reluctantly moved there to care for her a few years ago. She can't get around, can barely walk, has terrible balance and doesn't do much to help herself. We can't afford much help but I do have someone come in 2 hours a day three days a week to bathe her and tidy up just to give myself a break. I dress her and get her meal ready before I go to work. I can only work part time because I can not be gone the whole day which has put me in debt.
I cook, clean, wash, shop, bank and do everything for her since she is housebound. I take care of her the nights that the helper isn't in, bathing, dressing etc. Mom is negative, unappreciative, bad mouths me to everyone and won't do anything to try and help herself. My partner and I want to go visit her family for a quick holiday visit (no more than 6 hours) this weekend and mom is having a fit. She doesn't want me to go. She feels she needs me home even though I would be downstairs in my apartment. I told her how it isn't any different than the 5 or 6 hours I got to work. She says it is and now she isn't talking to us. I wanted to ask her aide to come for a few hours that day but mom says no, she doesn't want to deal with her. I am at the end of my rope. I feel trapped, tired, angry and guilty because of how I feel. All I do is care for her or work both in and out of the home in order to try and pay my bills. I am guessing this is normal situation for caregivers but how do you deal with it. I just feel like I need a break.
my care for my wife “returning “ from a stroke has made my chest often tight for want of air.
I see that the weekend in question has passed. I hope you went.
Please see the post called “saying ‘no’ to a parent”. On this site, begun by Barbbrooklyn in Dec.
She is safe for 6 hrs while you work. Respectfully, you don’t owe her an explanation of what you do with each hour or YOUR day.
Boundaries !
I often wonder if having a part time job would be a break for me because I get NO outside interactions except at the grocery store lol. (I doubt it. I probably would have quit the job to lessen the stress.)
Your so lucky to have in home helpers! How I wish for that!
So, I feel for you but you have to get your own breaks. TAKE THEM!
charlotte
🙏🏻🕊🌈
Please see the post called “saying ‘no’ to a parent”. Was posted in Dec by Barbbrooklyn.
Boundaries !
It might be time to research what services, if any, she might qualify for. Would she accept Meals on Wheels? That would cover one meal/day. Any care you bring in should be paid for from her income, not yours. Aide to help with bathing, light housekeeping, simple meal prep would take some of the burden off of you, including the payments. Sometimes Medicare can pay for in-home PT/OT, or other (minimal hours) in-home assistance, if she is housebound (sounds like she is.) It never hurts to get an assessment and ask! Consult with EC atty (her assets should pay for this, but often you can get an initial consult for free - have all questions/concerns written up and take notes!) They can determine if mom might qualify for Medicaid (even if they don't cover AL, sometimes they can qualify for some in-home help, depending on assets/income.)
https://www.naela.org - using your zip code, you can locate EC attys. Call and ask for details and if they offer free consult. Go see any that do, and assess who might be the best fit, both for help and cost.
Please look into medicaid long term care, sounds like you can qualify for a lot of aide help. And Medicare for therapies.
I am right there with taking care of my mom, but I'm alone and disabled and still choose to do it because I want to. She's my soul. I would never put her anywhere.
Sounds like the upper floor gives her some control and the guilt she gives is another example that she loves you but feels like she's lost all control of her life.
I deal with guilt and I don't leave that often.
Try positive reinforcement to get her to want to help herself. See if you can get therapy at home for both of you.
You are doing a great job. Go to your family but leave the aide with your mom even if she stays downstairs.
Look into services please.
You're lucky to have any support. This has been a horrible 6 months for us and I still have hope for a normal baseline recovery. I on the other hand am a mess. But I can get myself together when she's better.
Not every answer is to abandon your loved one. Not all of us were brought up that way. Good luck. Message me if you want, just had to say my 2 bits. Take time for yourself. I know I need to do that. But it's all time consuming. Get her to focus on what she loved and how she can't do it now but can if she works at it. Sounds like she's a lot better shape than most. Just my opinion.
If Mom is low income, you may be able to get Medicaid homecare. Your income is not considered. You don't need to bathe her everyday. 3x a week is enough. Thats all they give in ALs and NHs. Bathing Mom wore me out.
You have given your mom an opportunity to stay home probably about as long as possible under the current arrangement.
If your mom is on original Medicare she can get home health for the home bound. It will give her a nurse once a week to check vitals, it will provide a bathing aide for a couple of times a week. You can also get OT and PT to help her with her mobility issues. Her doctor will need to order it. You can call a HH Agency that works with Medicare and ask for them to come assess your mom and then work with her dr for an order. (If she is on an Advantage Medicare plan I’m not sure how that would work. Ask the HHA)
Then you can have the other aides you are paying do other things for mom. This would stretch your dollars a little further.
If you are living in a home your mom owns and you are trying to hang onto it then seek out a certified elder attorney well versed in Medicaid law in the state where your mom lives. They will let you know if they can help you keep the home even if mom is in a facility on Medicaid. Some states have provisions for the caretaker to remain in a parents home if they have provided care for a length of time for a parent who would have otherwise been sent to a facility.
You need professional advice appropriate for your state and your mom’s circumstances.
Another resource is your county office of Area Agency on Aging. They can do assessments and advise you of what resources your local Area might have available for you and your mom.
She sounds very vulnerable in her current situation. I’m sure it does frighten her for you to be gone. That’s why you have to recognize that her circumstances have progressed. This has worked for several years but it’s time for a fresh evaluation.
The circumstances have changed and she needs a new care plan for this next stage. And you need to recognize that there may be a period of time before death where she will need more care than you can adequately provide on your own. You may have had the idea that you would care for her as long as you could or until she died. Stop and take stock of where you are now. You need that break to figure this all out. I hope you find a way to take it.
Your mother knows how to push your guilt buttons, that is called manipulation and she is a seasoned veteran in pulling this on you.
Stand up, if she is unable to care for herself think about placing her somewhere, you don't have to have a front row seat in order to help her.
You hold the key to releasing yourself from this prison...why not use it? So she doesn't talk to you..so what..no big deal...this is just another part of her manipulation game.
Go on your trip, forget about her, worrying about taking a 6 hour trip is just plain foolish, stop planning and living your life around her.
I was in your situation. I am free of the responsibility now but had mom living in my home for 15 years. I did everything for her too. Mom is now living with my brother.
Have you contacted Council on Aging in your area? They came for us every other week for a four hour shift. So, a total of 8 hours a month. Not much but better than nothing. They bathed mom, prepared a light meal, tidied her room, played a card game with her, etc.
It’s draining to care for others. Is placing her in a facility a possibility? Why do you need her approval to hire someone for you to get away? Just tell her arrangements are made. Explain that you are not a machine and need a break.
I am so sorry. I feel your pain. Take care and many hugs.
You do need a break for 30-35% of caregivers die before the person they are caring for. If she made you promise years ago to never place her in a nursing home, forget it, circumstances are different now and you didn't know what you were promising.
I wish you the best.