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.
I have 2 brothers but they were no help to me, but my best friend watched her so at least I could still work a little and keep a job. If you have no help, you only have two options: Quit your job and be her 24/7 carer, or nursing home. Her condition WILL deteriorate just as my mom did, and it eventually took 1-1/2 hours to feed her per meal. When that was no longer possible, I got the feeding tube which was only a ten minute procedure for the surgeon. It took care of mom's needs and she was comfortable right to the end.
Hospice was helpful, but they have limited in-home care. Volunteers can sit but they do no hands-on care. A CNA can come in a half hour twice a week to help bathe, and you probably have to wait all day for them so I never used either. Cleaning mom was a daily endeavor and I had to change her diaper about 4 to 5 times a day. I used hospice to reorder mom's routine medications (Lopressor and insulin, and lactulose for her bowels), and routine lab work. Hospice did provide all the supplies I needed such as diapers, gloves, tube feedings, tubing, pump, hospital bed, lifts, gerichair, and so on. Diapers are very expensive--about 50 cents a piece--so I used about 4 or 5 a day representing $2 to $2.50 a day just for diapers. That's why I got her on hospice. Besides it got too hard to take to the doctor. Hospice still means care, but you have to make certain everything is done right. I fired two hospices before I found one I liked.
What are the plans for when it gets worse? How old are your children? Do you think this is good for them?
Is your own physical/mental health suffering? Do you think your and your family's needs come before your mother's?
As someone previously suggested, I would contact Social Security and begin the process of having her approved for SSI. You could also contact a local Senior Center, they have a boatload of information and will help point you in the right direction.
Take a deep breath, you are not alone. Do not feel as though you have failed if you need to institutionalize her, you gave more than most in a very difficult situation.
Keep fighting the fight. Thinking of all of you CG’s out there. 🤗
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.
xoxoxo
susan
Wishing you the best of luck!
** Just saw your question about an NH that has Chinese-Mandarin speaking personnel. Check around the NHs in your area.
Does your mom have no money? Happens, no doubt. She obviously needs more care than you can provide. I don't know how you go to work and have kids to take care of on top of that. There is NOT enough of you to go around.
When there is no money, except a SS check, there are still options. Perhaps there are some volunteer organizations in your area? It sounds like she needs to be in a nursing home where they can more easily provide the 24/7 care she needs. Get in touch with someone to find out about medicare (or medicaid, I always mix them up). Talk to a local nursing home.
Get the ball rolling so that you can reclaim some of your sanity and get your mom the care she needs too.
Best of luck.