My Mom suffers with dementia. I have family members that will give me a relief but only on their time. So I still feel stuck and responsible. My mom lives with me, I've been taking care of her all my life being that she was an alcoholic. Actually since the age of 5. My mom has now developed dementia. She's had it ever since she was 65 she's now 78. I have kids that will come in and do 4 to 5 hours a day to give me a break but that seems like it's not enough. Some nights she does not sleep. She's up all night long. I've tried every sleep medication under the sun and they don't work. Once I'm in bed I have a fear of not being able to sleep all night because she calls my name all night long just to make sure someone is home with her. Even though I have help and relief at times, it is still overwhelming. She's not combative. She just wants someone around her 24 hours a day because she has a fear of being alone. She knows nobody's name but mine so whenever she needs something she calls me all day long. I have a lot of anxiety, I'm overwhelmed and I'm burnt out even with help. I don't want the responsibility anymore. At the age of 55, I talked with my children about this all the time they are stressed with the fact that they are concerned about me. I feel really sorry for what my mom is going through and it hurts me so bad. I feel guilty when I have to leave her in her room by herself alone, but that's the only way I can get time to myself when I'm stressed out about her situation, and then on top of that no sleep some nights. She always wants to be around me all the time even when others are here. We have to take care of her everyday needs. She can feed herself but she can't use the bathroom or walk on her own due to neuropathy and other illness. I cry a lot thinking about her and that one day I might be in this situation. It is so scary.
I agree with those who say to transition her to a facility. What is being gained by cloistering her and you burning out? Nothing. You taking care of her in your home by yourself will not change the trajectory of her dementia one bit. My MIL is in LTC as a Medicaid resident and getting excellent care, while enjoying social interactions and the activities and events that the facility has to offer.
I would talk to your mom's physician about getting a recommendation for LTC. Then go online and download the Medicaid app for your county. It may be possible to get her into a place as Medicaid Pending, or enter on private pay and then apply after a few months. You have options -- you just don't like how you think changing the situation will make you feel. You can feel grief, but not guilt -- since you've done nothing wrong, there's nothing to feel guilty about. Maybe you have a dysfunctional, co-dependent relationship with her due to the lifelong alcoholism. In this case, maybe a good therapist will help you sort out a solution and put up boundaries to protect yourself and help your mom. I wish you much peace in your heart as you start to save yourself.
If these 'kids' coming in to help are no longer enough.. whether your kids or hired help, when you reach the point the care team can do no more, either not enough family helpers, they are at capacity or they are stepping back - it is time for more people in the team.
This may be aides through an private care agency, or via local aging services.
There is also a limit to how much can be done in a home setting. It can be exhausting managing all the team - especially dealing with lateness, no-shows, replacements.
It is time for a new plan.
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Unfortunately, you were groomed to be her life long caregiver. So it is going to take some tough decisions on your part to get beyond being responsible for her 24/7/365.
Her choices have led to this outcome, alcoholic dementia isn't hereditary, so unless you have followed in her actions the odds are you won't be in her shoes.
Sorry, a loving mother doesn't put her children through what your mom did, so in my opinion, you have gone above and beyond to help her, it is now time, because it is adversely effecting you, to put her in a facility.
Statistics show that 40% of caregivers die before the person they are caring for. Please don't become a statistic because she trained you that she is the only one that matters. It's a lie. YOU MATTER TOO!