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.

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You have committed yourself to a prison with invisible bars, ask yourself why?

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 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.
Helpful Answer (25)

You are indeed trapped and it’s up to you to change the situation. Please accept that unless and until your mother has a life changing event she isn’t going to change anything. So it’s on you to make changes. You don’t need to defend yourself or make excuses, but calmly let her know the living arrangement isn’t going to work any longer and new plans for you both are required. Don’t listen to complaints or argue. You’re not a good caregiver under this circumstance, and your mom needs good care. That’s not your fault, you’ve done all you can, it’s time for you both to live better. I wish you well in making changes
Helpful Answer (20)

It sounds like she needs to get off of second floor and live somewhere on first floor. It does not sound like assisted living would work, but I don't know her health all that well. Has she seen her doctor lately and have you asked him or her what level of care she needs? Would she qualify for medicaid. It sounds like both of you need her to.

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.
Helpful Answer (18)

I felt exactly as you do. In fact, I was trapped. I felt weighed down until I made decisions to change my situation.

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.
Helpful Answer (15)

You take action.
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.
Helpful Answer (15)
Kittybee Jan 2020
Seconding "time for a fresh evaluation."
Yes indeed you need a break. It’s a New Year...decide to make your life better. If she won’t welcome Aides in her apartment, then you have to get ball rolling on a facility. Then deal with Medicaid application process. If she’s coming in from Community, she needs nursing assessment (PRI) for admissions. Otherwise, if she can afford, ALF. Welcome to the club of burnt out Caregivers. ...a club nobody wants to really join. Hugs 🤗
Helpful Answer (10)

Keep in mind that you do not need her approval of you and your decisions.  You are an adult. Lots of advice here on your options - why not explore possibilities since this is no longer working? With an elder, health goes downhill with time, so sooner or later you will have to deal with the realities.
Helpful Answer (9)

You need to go. You have to show Mom that ur life is not hers. Just make sure she has what she needs. Is there a neighbor who can check in on her? Don't ask, tell.

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.
Helpful Answer (9)

The bad news is your guilt, co-dependence, exhaustion, etc. has you paralyzed. The good news is you're not actually stuck! Much good guidance has been given below. You are not trapped. You are not obligated. You are not a bad person for wanting to be done with it. Please take care of yourself and live your best life. Blessings!
Helpful Answer (7)

Omg, this is why I don't come on very often. You take care of her because you love her and weren't brought up to dispose of your loved ones.
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.
Helpful Answer (7)
Upstream Jan 2020
Anybody can tough it out for 6 months. Try 10-20 years. Then tell us how great you are.
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