I am the sole caregiver for my 88 year old mom. My siblings live 9 hours away and call her a few times a month. My mom no longer drives after totaling her car 2 years ago. She had a stroke but physically recovered. A recent CT scan showed mild periventricular white matter disease, nonspecific, most likely representing microvascular disease. She officially has mild cognitive impairment, but it doesn't feel mild. Doesn't remember birthdays, buildings, people, etc etc. Is socially awkward because she stares and blurts things out. I take her to all of her appointments and take her grocery shopping and to dinner once a week. She refuses to get an aide or to visit these lovely senior apartments nearby. We had an argument recently where I told her she was being selfish and I am tired and don't want to be her sole social/medical/etc person. She patted me, said she was lucky to have me but she wasn't interested in moving. I felt something change in my and now I just don't want to be bothered. I used to call her everyday, not to chat becasue she is incapable of holding on a conversation, more as a wellness check, now I don't want to. I will still do the things that HAVE to be done, but just feel over it. Is this terribly selfish of me? I feel guilty about it, but I also have raised my kids and now it is my time.
The real question is: Are these really *your* responsibilities?
I didn't see anything in your post that suggested you, personally, were responsible for her choices or hand-on care. Do what you legitimately can to see to it she has the care she needs, not the fantasy care she wants.
Being a bitter, unhappy person going through the motions of caregiving won’t work out well for either of you, as you are finding. I was lucky to have at a young age (19) taken a job in a care facility. I saw the people who had the skills and gifts for personal hands-on caregiving, and what they were like. More importantly, I saw I didn’t have those qualities and quit within a week. That lesson stuck with me through caring for my mom (only one of four siblings to do so), so I knew what *my* limits were compared to her needs and wants. Taking care of her finances, real estate, etc., I was there with meticulous accuracy and care. Seeing to it she got into the assisted living she, herself, had chosen while she was still in her right mind, I was on it. Organizing family to help with moves, I handled it all. Changing adult diapers? Oh, heck, no! I’d push the nurse button (bless those angels who do that kind of work!).
Sounds like you, sadly, hit the wall before figuring this sort of thing out. Work on sorting it out, and stay on this forum and keep reading. The folks here, their experience and wisdom, helped me enormously.
I think that you need to raise this issue with her again. Tell her that you’re tired and no longer want to be a caregiver. Ask her if she understands that you’re tired. Be very pointed about this. Tell her that as you are no longer willing to do it, she has to move (or get in-home support, if that is an option). Expect resistance. Persist. Really, it’s up to you.
She is holding you hostage (just as my own mother did). She is the one who is being selfish.
In my own case, nothing changed for me until I said that I was done. Had I not finally set a limit, I would still be running over to her old apartment, driving her to endless appointments, and propping up the myth of independence. She finally moved into a retirement home closer to my sister (in another city) 6 months ago.
I am relieved that she left, and also still working very hard to get my life back.
Don’t underestimate the toll that this is taking on you. As Leonard Cohen wrote: ‘It’s either me or you’. Choose wisely.
I would encourage you to start making her accept outside help or go without, otherwise, she has no incentive to not suck you dry to prop her up. You will be the only one making change here, she's told you where she stands and quite possibly doesn't have the ability to comprehend how hard her needs, wants and interests are on you.
I am so sorry for you that your mom was so belittling about your needs. It hurts our hearts in a way that does change how we feel, deal and respond to the offender. I do want to let you know that getting terribly selfish and self centered is common with old parents, they have forgotten or choose to deny that we are no longer children under their authority. Getting them to see that truth can be a challenge, especially if dementia is involved. That being said, you are not obligated to behave as being under her authority.
“I will still do the things that HAVE to be done”
Examine that idea a little bit because there will be more, much more, that will have to be done. This is too open ending.
Your idea and mom's idea and possibly even your siblings idea will be different on what the things are that HAVE to be done.
Expand on that declaration.
I will still do the things that HAVE to be done,,,to keep mom safe and myself sane..might be an idea to start with.
I will still do the things that HAVE to be done to allow me to live my own life instead of mom’s life.
I will still do the things that HAVE to be done to manage mom’s life from a safe distance to insure my own health and happiness.
I will still do the things that HAVE to be done to allow my siblings an opportunity to care for their mother.
I will still do the things that HAVE to be done to remove myself from a caregiver role in order to once again be a daughter on equal footing with my siblings. I might even call a few times a year.
Think of the iceberg. The tip that is showing doesn’t reveal the majority below the surface. You wanting to pull away indicates that you are most likely extremely burned out. That you have compassion fatigue and need this separation.
You HAVE to follow this inner knowing for you and mom. it takes much more time to recover than we realize after burnout.
Don’t compare your burden to anyone else’s. No two people are alike. We all have our own emotions and ideas of what is selfish etc. we have to live with ourselves not someone else. If you are done then you are done.
You don’t owe anyone, including mom an explanation.
Your mom lacks insight, is not able to understand that she has issues that require a lot of help. Anosognosia is a medical condition, not a choice or denial. Don’t spend your Emtional energy trying to make her understand. She can’t.
Satisfy yourself that you have done the responsible thing to get her the care she needs and the responsible thing to acknowledge you are in over your head and have to take action. Mom’s approval is not needed. Your approval on how you live your life is mandatory. You will actuslly be a better daughter when you start caring for yourself.
And indeed mom is lucky to have you.
Keep in touch and let us know how it is going.
You go and tour ALs near you. You pick one you like. Thats what I did. Someone kept my Mom busy while her furniture was moved into the AL. We put her into the car and when she asked where we were going, I told her to a nice apartment where she will make new friends. Took her in, took her to her room, stayed just a little while, and then left her with the staff. I did see her every day for not longer than a half hour unless somekind of entertainment was going on. Sometimes as short as 15 min just to bring her laundry back. When I left would just say "see you later and a kiss on the cheek". Never said I was going home. Mom was literally up the street from me, so it was easy to just "check in". The AL may tell you to stay away a few days so they can acclimate Mom. I have to admit, wherever Mom went, she acclimated well.
Mom has no idea of her needs. Her mind is telling her she is young and can do anything. You need to place her for you. You matter too. Don't discuss it with siblings, they aren't dealing with her. If your POA needs a doctor to invoke it, get it done. Be Moms daughter that visits.
I would replace guilty with grief. You are in a grieving period due to burnout and the fact that your mother is refusing any other option and is in her declining years.
Are you POA? If not get it NOW. If it is too late, if she is not competent, then you need to consult with an elder care lawyer to determing the best next steps for your mother and you while you are there.
Another Poster said her PC said it is either you or them. Please, always choose you and then you are better to physically and emotionally help them.
Wishing you all the best, it certainly isn't an easy task. Only the fierce, and you are fierce, take this task on.
It's my aunt who has dementia, and my family were trying their best to push me into caregiving even though I live five hours away. I felt obligated, because she named me as her POA, however, it wasn't activated until she became incapacitated. However, it's all I heard from them. "You have POA. I have a family. Can you come and stay for a week or longer?" Or "You should know that aunt doesn't want any strangers in the house to help her. We don't want to put her in a facility because we don't want her to think we're forgetting about her, so can you come and stay with her?"
Mind you, aunt and I would butt heads. She didn't want me helping her, except what she wanted to be done, like clean her house or buy or make her favorite, expensive dishes. Aunt continued to say, "I'm sorry I'm such a burden, but I really appreciate your being here and helping".
It wasn't working for me. She only wanted help on her terms. What SHE wanted and not what she NEEDED. I was only there propping her and giving her false independence.
I was tired of hearing this sentence, "You have POA". The POA I had wasn't activated, and I kept explaining that. Told by her neighbor to take her to court. It was just an overwhelming nightmare for me that lived out of state with a job and her own life.
I sent the attorney a letter cc'ing aunt that I could not fulfil this request as her POA, and that aunt should choose someone closer, since she chose to move near these pushy relatives.
Aunt was livid. I chose to take back my life. She wrote me out of the will, which is fine by me. I couldn't take anymore of any of family and aunt's neighbor constantly calling me, texting me with pitiful pictures of my aunt and updates on her and asking when will I be back to help or stay for a bit.
No, you are not wrong. Step away and reclaim your life. It will only get worse.
So that you get a much needed break I'd immediately stop taking her to dinner. I'd stop taking her on the grocery run. Pick up her groceries when you get yours. If she balks and wants you for both hire an aid (from her money and have the aid take her to eat and take her on the grocery run.)
No need to call her every day. You will see her once a week on the grocery run. Maybe call her every 3rd day and keep it brief.
Since she is 88 limit medical appointments to only critical ones.
If you have some coming up that are routine/borderline call to reschedule the appointments 3-4 months out.
Schedule yourself for an out of town vacation.
Not only is it ok, it is often necessary for your well-being, it was for me.
I pulled away a lot a year ago, and now I'm feeling like I need to pull away more. Sometimes you are doing more harm than good, by enabling them to continue to live in an unhealthy situation.
I called the Area Agency of Aging . A very wise social worker told me to “ Stop helping , let her fail , it’s how to show her she’s not independent “.
The social worker came to my mother’s house to interview her and determined my mother was not safe to live alone at home . The social worker helped me get her out of her home and into an assisted living that I chose ( because Mom refused to tour ).
It’s not fair that your mother expects you to prop up a false independence because she’s “ not interested in moving “. 🙄🙄Her flattering you is manipulation to keep you doing what she wants .
You sound burnt out . On top of it you felt that shift because Mom ignored your telling her that you are tired . Your mother gets what she needs not everything she wants . You do not have to be her sole solution .
Will you both cry about this? Certainly. Is this not WORTH grieving? I think if this isn't worth grief, what is. But throwing yourself bodily on your mom's burning funeral pyre won't help her and won't help you, and you will get no help for it. People will mutter and shake their heads and say "What a shame" and move on. That's life.
I am so sorry. I know how brutal that sounds, and I don't mean it to be. But the decision s now are tough, and they are yours and no one can do this for you. Heart out to you. I hope you'll update us.
Know that I am 82. THIS is what I would tell MY OWN DAUGHTER.
I would continue to cut back on your calls and also what you all do for her so she will see just how dependent she actually is and that she will either have to move into an assisted living facility or hire in-home help, both using her money.
As long as you continue to step up and do everything for her, things will NEVER change.
And just FYI, after you step away, I would certainly put a call in to APS and report a vulnerable adult living by themselves and they will come out and do an assessment and if need be, take over her care, as your mom really doesn't need to be living by herself anymore with the dementia she has going on, because as you know that will only continue to get worse.
Your mom has had and enjoyed her life, so now you deserve to do the same thing.
I wish you well in getting this all figured out before it's too late for you.