I am the sole caregiver for my 95yr old mother. I am 64yrs old and still work full-time. She lives next door to us. She has macular degeneration, an ileostomy and colostomy, breast cancer (stable), and now mental issues. I have been caring for her for over 12 years. Up to 3 months ago I did everything for her including changing her bags. She has recently started receiving hospice care which helps immensely. I could deal with it all if it wasn't for the mental part of it. It is literally draining the life out of me. She accuses people of stealing her toilet paper, toothbrush, one sock, and sees people sleeping outside her window, even coming in through the window, and this is on repeat. Of course, it is all in her head. The final straw was when I went over there and heard her saying over and over "Let something bad happen to her" which was about me! I couldn't believe it! She is totally dependent on me for everything. It hurt me to the core. I feel anger, on top of the guilt of wishing this would all end. We were never close and she did very little for me when I was growing up. I am nearing retirement and can't stand the thought of this continuing. She doesn't qualify for Medicaid. Thank you for reading this. I would love to here about your experience. Just feeling a little down today.
You work full time, too.
Hospice can help.
Although that is not enough.
Your mother is perhaps both scared / frightened of what will (continue to) happen to her physically and mentally, along with perhaps being a narcissistic personality type (or other mental illness / or dementia).
You CAN NOT take her words personally although this is almost impossible NOT to do ...
What you have to do is realize YOU deserve a life besides 24/7 with mother and working full time. You will have a nervous breakdown if you do not change how you think, believe, and behave.
* Create a schedule for a caregiver. (If mother doesn't want, that is her decision).
She will do without that help. You WILL NOT fill in.
* Decide on a seriously reduced caregiver/work schedule with mother to a few hours a week or whatever you feel you still want to do (to maintain your own health and well being)
* Expect her to be mad, pissed, etc. This is new to her and she won't like it. Too bad.
* She pays for her care.
* Be serious and when you set your limits / boundaries, stick to them.
* When she bi**hes at you, tell her "the way you are speaking to me now is unacceptable. I am leaving." Then leave. She may or may not get it that when she speaks to you in derogatory/ demanding ways, it is not acceptable. With dementia, she may not be able to help it ... but it sounds like she has enough cognitive abilities now to know what she is doing. Either way - leave.
You can hire ind contractors, a college student, through an agency.
Do something very soon. You've done way too much already for way too long.
Do not wait until you have a breakdown and can't care for her - or even do your full time job. You must learn to take care of yourself, first.
We've all been there. It isn't easy and you have to make these changes.
When you expect her to be pissed, it will be easier for you to handle it / her.
Tell her you cannot do it all anymore and that you need to take care of yourself, TOO.
Gena / Touch Matters
But, I chose to be my mother's caretaker when she started to have problems and needed care. My counselor told me I kept going back to Mom because I needed to resolve my relationship and feelings toward her. I believe that's true.
In the end, after living together for 22 years and being her only caretaker, I finally resolved to let her be, keep her comfortable and fed, and to let her go. No doctor's ever talked to me about hospice or pallative care, and her last days were filled with with only me there for her. In the end, I decided that was a fitting and just end-of-life for her, and just for me as well.
I had feelings of guilt and mourned her deeply. But, I also realize that I did the best I could with the tools that I had. Sometimes, we actually give them more than they deserve, but in the end, you can let go and realize you did a wonderful thing in your life.
My mom is in a memory care yet I still deal with what you describe. All I can say is that dementia really is what they say, the cruelest disease one can live with.
I can’t even offer advice, just support in knowing you are not alone. I don’t think there are any answers. Understanding our loved one is no longer themselves helps a little. But, our feelings and emotions still control us. It’s painful for all involved. I am trying to engage in support groups and counseling. It seems to help some. You might look into that.
My final thought is that it seems there is a new issue to deal with daily. Just when you think one issue has been fixed, another appears.
Try to take care of yourself.
She's angry, she's old, and has very little time left, and she's imagining things that aren't real. You can't fix that for her.
You were never close, yet you've spent 12 years caring for her? You have nothing to feel guilty about. You can't stand the thought of this continuing. Don't continue! It is draining you, and you need your strength and health to take care of yourself as you age! You do not need to take care of her. Let hospice take care of her. Let her hire aides to help her. If her care is unmanageable at home, she can go into a skilled nursing facility. If she owns her home, then the home will be sold to pay for her care.
Caregiving kills caregivers. 40% of caregivers die before the person they care for. It is hard. It is exhausting. I've been caring for my husband for 10 years.
I hurt every day. I'm only 63. I can't find anyone to help with his care - he's difficult, and I haven't found someone willing to manage a difficult patient. Everyone wants to take care of a sweet, easy-going, 90 pound grandmother.
No one wants to take care of a strong, 165 pound man who hits people away and freaks out at every diaper change. I don't want to either. It just has to be done. And he's been kicked out of 2 nursing homes. I have a social worker who says she's trying to help me get him placed in a skilled nursing facility, but she tells them that he is difficult, and they say they can't take care of him with his behavioral issues. I feel this is going to kill me. And then I worry what will happen to him?
Anyway, that's my experience. Pretty different from your own. Just back off from being your mother's sole caregiver. She is nearing the end, and she has hospice to manage her care needs. Let someone else figure out this situation. You have done enough!
When one is burnt out at their job they usually quit and look for a new job .
I’m a nurse . Looking through that nurse lens only works for so long when dealing with an abusive family member on top of caregiving for them and holding down a job . Been there done that .
OP please find a better solution that works for your mother and you . It’s time.
You matter too .
After a decade of caregiving , while working, raising a teen , and neglecting my husband , my mother’s doctor suggested placement for my mother to protect my physical and mental health. Elders tend to be more abusive to their caregivers who are also their family .
Her Medicaid qualifications aren't your problem. Not dying before you retire is. You've put in 12 years, enough time as a free slave with extreme stress. I'd be planning your retirement. Start early with a 2 week cruise, to give your Mom a wakeup call.
She can hire help since she's saved a small fortune getting free home care for 12 years. In addition to the emotional drain, do the math:
12 years x 365 Days = 4,380 days. Say you spend (average) 4 hrs. a day on Mom's hands on care, which comes to 17,520 hours the last 12 years. At $20/hr. (a very low rate) that's $350,400 of free caregiving that Mom has gotten from you, her unappreciated and unpaid slave.
Do you see the light yet? Now that Mom has Hospice care, take that cruise. Then become "sick" with something Mom can't dare catch (Covid, RSV, Shingles). Let Hospice carry your burden now. You have paid your dues long enough. Mom can hire extra help if she needs it, I'm sure she has plenty of cash stashed.
Call her twice a week to complain how miserable you are, how nobody helps you at all. Then book another cruise. She won't even know you are gone. No, you are too kind to do this.
You are just too much a honorable and devoted person for your own good. You have gone beyond the call for 12 years, plus worked at the same time. You are so unselfish you should get a medal. Stop being so wonderful to someone who never really deserved it. Focus on you, your family and your retirement. Make your life as happy as you rightfully deserve. You have served your time and owe her nothing. You did what was right and then some. People like you are very rare. Don't let her end of life depression hurt you whatsoever.
Without your 17,000+ hours of personal sacrifice, she would have never made it to 95. You did a fabulous job, and the end is near. You got this!
She's trying to hurt you, it seems. I think you should try to separate yourself from the desire for her to recognize your sacrifice and care for her. You have zero control over how she acts and what she says. So let me tell you this:
I think you are a wonderful person for what you are doing. Truly, you are doing something that you don't have to do, and you are getting nothing but hurtful statements and lack of respect and regard in return. But you're still helping another human being, and I think you must be a very decent and caring person to do that. I know how hard it is to take care of someone and it is worse when you are in this type of relationship with someone who has failed you. There are some parents who are just not right for parenting, and they can be difficult. But you are putting that to the side and helping this person anyway. That is not required, but you're doing it. That doesn't mean you have to keep doing it, you'll still be a good person even if you stop right now. I am recognizing your hard work and your sacrifice. You deserve to be recognized by someone for this, so I am doing it right now.
I have known some folks that were like this, and the only way their relatives came to any peace was to simply stop hoping for love and respect, to keep a distance emotionally and realize that anything the cranky, disordered thinking individual said was a product of a disordered mind and not an actual pronouncement of truth. They were just saying things to hurt the person, and you can get to a point where it has just as much weight as someone saying the sky is purple. Not true, doesn't matter, don't care. It takes some emotional work to get there, but you can do it.
I'm sorry that your parent wasn't up to the job, but I am glad that you have made a life for yourself anyway, and that you will be retiring at some point. I wish you peace and happiness. And remember, if you have to place her at some point, that's ok, too. I know there's qualification that has to happen and money spent down, etc., but if it does have to happen, that's ok. You've done a lot, more than most would. Those bags? They don't change themselves. It's not easy, and it's not failure if she ends up elsewhere. In the meantime, make your current reality as peaceful as possible, and try to use the grey rock technique. I think if she was in her right mind and wasn't a problem (some would use other words) to start with, she would never say these things. A normal person would be so grateful that you were helping them.
It sounds crazy but maybe get yourself an amulet of some kind. Italians use horns, often as jewelry to wear to ward off the evil eye. It sure sounds like she might have been "casting a spell" in some way, and an amulet would ward it off. Or maybe designate a rock or something that you can carry with you as your protection when she says hateful things to you. Let the item absorb it for you. You don't even have to believe any of it, just carry the amulet to remind yourself she has no power over you.
You deserve a life of your own, and the freedom to relax and enjoy your time at the end of each workday.
Sounds like she needs 24/7 care ( supervision ) . She’s confused , should not be alone .
People get old. their filters fail. Mom said stuff to me I couldn't believe. My MIL hated me with a grand passion, and when I divorced her, she said it to my DH so he could come home and tell me how much she hated me.
Sadly, talking to them is pointless. Your mom really probably belongs in a facility by now--would she agree to that? At 64, you probably have your own aches and pains.
As far as the 'seeing things'-my MIL was on antipsychotics the last couple years of her life and it did help with the 'hallucinations'. And also some benzo of some kind, IDK what. Their goal was simply to keep her calm. It took a while to find the right combination of meds, but she was finally able to be dealt with, most days.
Can you keep her on Hospice? My MIL was on it for 18+ months. It sure cut back on needless dr visits and testing and stuff.
This is easier said than done, but try not to take it personally. My mom was kind of cranky with me, but she really didn't mean a lot of it. Since my MIL was simply saying exactly what she FELT...I was OK to walk away.
If she doesn't qualify for Medicaid, then she must have some Medicare coverage. MIL's hospice was totally covered by Medicare.
Good Luck to you. This is very, very hard!