Even before the dementia took hold, I was never "allowed" to see a movie without her or go on vacation with just my kids without her. Sure, she realized the importance of me spending time alone with my kids, but didn't understand why SHE couldn't be there too? She would tell me that she would never do that to her mother (her own mother died when my mom was only 15 months old. Clearly that made a huge impact on her parenting style with me).
She is now living with me. I spend FIFTY FOUR HOURS with her a week. When she is out with the caregiver, she constantly asks "where's Karen?" and the caregiver has found that a simple "she's out with friends" or the like, won't work. She has to say something my mother would approve of, such as "she's at the gym" (I"m overweight and mom has been trying to get me to lose weight forever!). I guess the thought is that if it's fun, mom should be there with me. I shouldn't be enjoying any time away from her. I should be including her. Well, guess what? I don't want to include her! 54 hours a week is MORE than plenty enough hours for me to spend with her!!
So here's the issue. I just can't do this anymore. I thought a good alternative to assisted living would be to hire caregivers to do as many hours as it would cost to do the assisted living. This would give me lots of free time.
I don't want to abandon my mother, but I thought that say, ten, twelve hours a week would be great on my end. When I discussed this with the caregiver (who found a new job and will be quitting us anyway), she said that might be good for me, but she doesn't think it will be good for my mom to spend less time with me.
I was just about handling the guilt, but now it's back again. Sadly, she's right though. If you were to ask mom, she would say that she doesn't see me enough even at 54 hours a week!
I'm just so burned out. Other than the paid caregiver, there's only me. No family other than us.
It doesn't surprise me that mom only wants me. I'm all she has ever wanted since my dad passed away in 2005. Her entire existence revolved around only him. Now it revolves around only me. Maybe he liked it but I HATE IT. I feel emotionally strangled to death. I feel her eyes bore into me when I come downstairs as if to say "oh thank God you're here, now I can breathe again."
I Love my mom. If I didn't I would just stick her in AL and never go see her again!
I want to do what's best, but is me seeing her less really best. It's best for ME, but it's not best for her. So, who matters more? Me or her?
I fear if I see her less it might accelerate the dementia as she will be more frantic not being with me as much.
Please help, I just feel so overwhelmed and burdened and guilty and resentful and unloving and wishing one of us would just die to get this over and done with.
The only difference is that I am also able to find time to clean my house, go out with a friend unencumbered by thoughts of my mother continuously playing over and over again in my head, start my own business, laugh once in a while and ..breathe. I was not able to do any of those things before. I made the decision that I DESERVE to smile.
When I get old, OF COURSE I want my children to be there for me, to love me, to fight for my needs, to kiss me. But to what extent? If my wants (e.g. be with me ALL the time and never leave me. Never. Ever) are so overwhelming for them that they want to kill themselves JUST to get out of the torment, then that is NOT what I would want for them. IF my mother was in her right mind, it's not what she would want for me either. The problem is that at an old age, some people can become self centered and do not think about how their actions affect others. And dementia exacerbates that. I expect to be the same way if I live that long. I also expect my children to spend SOME of their time with me, but to have a life also, otherwise what's the point in living?
To those who held their mother's hand 24/7 until they died, good for you. Truly. I really mean that. If my mother didn't have all of the disabilities she does, if I had a family to help out, if..if...if.. then I would have loved to have been in that situation also. Hugs to all of you wonderful, kind, loving daughters and sons.
I think that some people wrongly think that AL is prison. It's not. She just lives somewhere else. Big deal. If I want to spend 24 hours a day with her I can. I can take her out whenever I want to. The only difference is that I now have time for me, and I deserve that. The stress was killing me. Now I feel I have a life.
It is different for each patient and caregiver. As difficult as it was to keep her at home with me, I treasure the precious moments that we could connect. I feel like the gift of the end of life love is one of the most important accomplishments in my life. Caregiving is not easy and we must take care of ourselves first. i could no have done it without hired help in the home and hospice guidance. I pray for the caregivers on this journey with their loved ones. In the end, we need to feel that we honored our loved ones with the decisions we have made. One shoe does not fit all. God Bless!
Let the sulking begin. Don't bother to try to make them happy. That's never gonna happen!
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