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Mom has been home from rehab for about a month now. She is obsessing about how much 'was wrong with her' and how she is lucky she is able to do 'anything' for someone who was at 'death's door' (these are real quotes).



She is refusing to do the work the PT has told her - walking up and down the hallway and what the OT has told her - shower twice a week. Husband and I are at our wits end because we are running around like chickens while all she is interested in doing is watching the tv. We think she got used to having everything done for her while in rehab (meals, laundry etc).



At first I was happy she came home and was encouraged she is dressing herself and toileting. The issue now is that my husband and I are burned out (the care of her has been ours alone for 15+ years, coming to her rescue financially and more). I want a life again and am ashamed that I told her I hated this situation (this was after she called me names for asking her to shower/eat).



We didn't sign up for this but I am beside myself not knowing where to turn or what to do. I suspect there may be beginning of dementia at play so I know it's not her 'fault' but it is draining hubby and myself. The button pushing is awful... she aims to hurt me and usually succeeds.



She was approved by Medicaid in rehab for LTC but I have no idea how to move forward. Her social worker is coming tomorrow so we plan to ask her for input.



I am putting this out there to see if anyone else feels the same as well as the awful guilt for saying hurtful things and not wanting to do it anymore. Husband and I don't feel like doing anything at all and are bogged down with the whole scenario. I think part of me worries if I don't do this for her then karma will bite me on the butt when I get older.

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You start by putting one foot in front of the other.

You have already taken the first step by seeing a social worker.

Trust me, I understand what you’re going through. My mom lived in our house for fourteen years.

Life becomes very difficult and challenging for full time caregivers.

Best wishes to you and your family.
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orangemonster99 Jun 2023
Thank you
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Social worker?
Well, you may hear that it's time to place Mom, and to (WITHOUT anger) explain to her that you cannot go on any longer, and intend now to live your own life. That she will be going into placement.
This would have been MUCH more easily done from rehab.

Then again from the Social Worker you may hear "You just need to see someone about burnout", "put mom in respite, take a vacation". "We can get you help (they can't) and make this work (it won't)."

This is up to you. There's no nice way out of this. It is time for the hard truth.
You may want to feel guilt, but grief is the word you need to go for instead. You didn't cause this and you can't fix this, and imho it's wrong to sacrifice your life to it.

Time for the hard talk with Mom and her social worker. Any wishy-washy behavior on your own part will send you back to square one, so speak when you and your husband AGREE TOGETHER that you are at the end.

I am so sorry. I wish there was some good news in this, but there isn't. All will grieve this, and it is worth the grieving.
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orangemonster99 Jun 2023
Yes - it would have been easier from rehab but she was mobile and getting more independent and also swore up and down she would do all the right things. I feel like a fool for believing it.

Thank you for your comments - I agree with them all and grief is a very apt word to describe how I feel. <3
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Yes, that's normal. You need to move her to a different mode of care - but you see that now, right?

If it helps, think of mom as not the same person that she used to be. Her mind isn't mom's any more. Her body isn't, her mind isn't, her reactions aren't. When you're feeling guilty (and you shouldn't), remind yourself, THAT'S NOT MOM.

You'll feel better when she's out of your home getting the better care that she so clearly needs. Remember the good times when she was herself and then move on. It's sad, but you and husband need your lives back. Like yesterday.
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orangemonster99 Jun 2023
She is definitely not the same - but she always had some issues with selfishness it's just that now nothing seems to matter to her but getting what she wants. Thank you!
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Hi orangemonster - has your mother felt "awful guilt" for saying hurtful things to you in the past? I'm guessing probably not - and neither should you take on that guilt. It sounds to me that you've provided amazing care to your mother for over 15 years - you're placing way too much pressure on yourself - and being way too hard on yourself - for one minute of thinking that it doesn't naturally cause mental and physical burn-out - we're human and can only take so much.

Please look at the positives for all you have done - no one is perfect in this process - whenever you have a moment of blaming yourself for any negative emotion you've felt, just stop - and turn that thought into something productive you've done instead - in all the help you've provided to her. She's lucky to have you, for sure.

Congrats for her being approved for LTC - you can focus on finding a wonderful place for her continued care...hoping the situation lightens from here on!
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orangemonster99 Jun 2023
You are so kind with your comments - thank you. I have a sister who doesn't do anything for her so it's always been on my husband and I.
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How and why did she come to live with you over 15 years ago? Why did she need financial rescue?

The move to LTC should have taken place immediately after rehab. Why didn't it?
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orangemonster99 Jun 2023
Hi - sorry I should have clarified! She has lived with us for 7 1/2 years but was dependent on us for MUCH longer to bail her out of situations due to her bad decisions. It's a very long story but it has been stressful and we are just tired. See above regarding the non-placement after rehab.
Thank you...
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Good Grief 15 years? Gotta wonder why. Time for her to be placed in a home so you can start living your life with your husband.

Don't worry about Karma you have already paid your dues when it comes to her.

Forget about all the mumbo jumbo verbiage stuff, get your life back, there are no guarantees, you could die and your mother could still be pampered.
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orangemonster99 Jun 2023
Thank you so much - she has lived with us for 7 1/2 years but we have been caretaking for her for much longer. Sister has not helped at all so it's always been on us. She has just become used to calling the shots all her life and expects far too much.
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You’ve been a tremendous asset and gift to your mother for an incredible 15 years. You’re experiencing very understandable burnout and as such the current living arrangement is not working for anyone. There is zero judgment, it’s simply a fact, mom is refusing to cooperate with the help you offer, you’re exhausted from trying, and your home life is suffering. All those point loudly to the need for a new arrangement. Please do all of you the favor of feeling the social worker, and anyone else necessary, that this isn’t working anymore for anyone. Please reclaim your home and life. Mom has shown you she doesn’t like your input, there is nothing to feel guilt over, you’ve done a great job. Time to focus on your husband and your future. Please let us know how it goes
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orangemonster99 Jun 2023
You are 1000% correct - we are frazzled and worn out from trying to get her to do the right things to help herself. The catch 22 is mom wants to make all her decisions and have us clean up the mess when it hits the fan however she will not listen to anyone's input to actually prevent problems. She has never learned this lesson throughout her very long life. Thank you...
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Thank you all for your thoughtful comments - I am struggling to get past the feeling that it is my duty as her daughter to be the caregiver... this is from years of being brought up by her to think that way. Oh and she 'always helped her mother' (despite the fact that she did not have her mother living in her house).

Husband and I are just beyond words right now - we feel drained and sad that it has come to this. When we came to her rescue so many times we never thought it would become a life like it has. Her expectations are not at all in line with what we are now willing to give. It is just a matter of figuring out what we need to do - the thought of her being in a nursing home hurts my heart and I am still grappling with it.

It does help to know that I am not alone in feeling this way - thank you again.
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faithfulbeauty Jul 2023
Hi, I can identify. I'm an only child and my father is getting to the point of needing extra help in his home. I do a lot already. I clean once per week, do grocery shopping, take him to doctors appointment and wash his clothes weekly. He just told told me today that his doctor asked him if he had thought about having someone live with him. I think he was trying to give me a hint. I'm emotionally unable to do this because of very tough childhood of which I was mistreated. But I feel guilty for not being there all the time. I asked a question about guilt a few weeks ago pertaining to feeling guilty for wanting to suggest assisted living to him. I got some great answers. One of which said wanting your parent to have the best of care is no cause for guilt. I know I'm not trained to care for him properly and I have to work. I retired a couple of years ago but will be going back to work soon because I can not afford not to work. I wish you all the best!
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You are not horrible, and you're definitely not alone. Almost every one on this forum has been burned out from caregiving. Welcome to the club no one wants to join.
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You are not horrible by any stretch and I know exactly how you feel. So many of us feel just eactly like you and your husband.

It's very good that her social worker is coming for a meeting. It is at this meeting that you have to tell her everything and that you and your husband can no longer be responsible for your mother.

Make sure your mother hears this. Say to the social worker right in front of her in plain language that she will do nothing for herself evern where she is able to, will not bathe, and is nasty and abusive towards you. Make sure you speak very plainly indeed and let this social worker know that you and your husband have been meeting her every need for 15 years and WILL NOT UNDER ANY CIRCUMSTANCES continue being her caregivers. Tell her that you believe the only option for your mother is placement because she cannot afford to hire live-in help.
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