I am the ONLY child caregiver for my mom that requires 24/7 care, for toileting, eating, immobile, pretty late stage dementia. Mama had a stroke which made her unable to walk or bear weight for very long. She needs help with everything and is on a strict toileting schedule in which needs transfer help. How did you handle it?
I am working full time from 8 - 5 in which a caregiver helps during this time but I have anxiety on if the caregiver will show up or if they quit. I have kids in the house and take care of. I take care of mama at night and get up in the middle of the night to change her diaper. I have a little support from my husband who gives me grief from time to time. I have no other help. How did you handle this if you went or going through a similar situation? Can I get more help? No, It's expensive and my friends can't help. Post me your life schedule, maybe we can bounce ideas off of each other to lessen the load or pain.
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Wishing you the best of luck!
xoxoxo
susan
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i recently had some health issues of my own that reminded me I can’t do everything. I have to work—I gotta pay my bills and save for my own retirement—I’m not married and have no kids. I’ve been running over to the nursing home several times a week to try to make her happy (impossible!).
As the nurse told me when I was in my room after emergency surgery (let’s just say I ignored the many warning signs my body was giving me)—“you can’t pour from an empty cup.”
if you’re getting up in the middle of the night to toilet and change your mom, it’s probably time for a nursing home.
it doesn’t make you a bad person to get help.
I wish I could say that I have all the answers, but I don’t! With that said, here are some things I have learned:
- Get control: Because my mom was so stubborn and no longer able to make decisions, I had to go the extremely expensive route of getting guardianship. However, I’ve known many folks who did well with just a durable power of attorney. Without doing this I would have not had the ability to make necessary financial and legal moves for my mom.
- Get support from every source possible: I have discovered that The Alzheimer’s Association, my local Agency on Agency, and support groups had invaluable information. Also, even though they might not always be able (or willing) to provide hands on help, family and friends are essential for reminding us that there is life outside the dementia prison!
- Admit when her care is above your pay grade. If your loved one is blessed to live long enough with this disease, it is likely that it will be too much for any one person to handle. Explore the options now for when that happens. I’ve had to use respite care, aides, sitters, hospitals, rehab, and currently memory care and hospice. It is possible that I will need to use a nursing home before mom finishes her journey.
- Learn about government programs. I’ve had to learn more about Medicare, Medicaid, Social Security, and the VA’s Aide and Attendance program than I ever wanted.
Good luck!
Without knowing any details about your situation, it truly sounds like you are already overwhelmed. You must get help, or else place her where others can give her the care she needs. This might cost some of her money, but I see no alternative. You need a social worker to help explain what alternatives are available. If you live in the US, contact your state council of aging.
I wish you all the best. Hope too you stay on this site for resources and support. You do not have to be a martyr.
Keep fighting the fight. Thinking of all of you CG’s out there. 🤗
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