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.
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.
** Just saw your question about an NH that has Chinese-Mandarin speaking personnel. Check around the NHs in your area.
Wishing you the best of luck!
xoxoxo
susan
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. 🤗
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.
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?
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.
My heart goes out to you - I know how difficult and agonizing your situation is. Ask to have her evaluated and search for facilities near your residence. As much as you care for her, it is difficult to watch your mother in her decline - unfortunately, with advanced dementia, you lost her long ago. It was a relief for me to know that my mother was finally at peace, as I knew she would never want to continue living in her tormented situation. Take care - keep us posted.
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.
My Mother has been living with us 30 years now, only the past 3 she has LBD, only able to feed herself. It was a progression at first I would make her a lunch and go to work, but would find her on the floor when I got home, and her lunch was not eaten, finally I had to quit my job to stay home. Now I am her 24/7/365 caregiver. I feel like a prisoner most of the time. I get time off when she goes into respite that is such a relief. I know I sound horrible but I know she is in good hands. I did find an adult daycare nearby but haven’t tried it out yet. Maybe when the weather gets better. But I really have no use for them unless I have an appointment or errands to do. I have scheduled my life to do these when my husband is home. But golf season is coming I believe she will be in daycare at least once a week. My husband isn’t going to stay home for her. oh yes I don’t receive any payment from her, anyway she isn’t of mind to discuss anything. She doesn’t even know who I am, just a nice girl she stays. Well
my day starts: get her out of bed, diaper dress, feed, put her in her chair, listen to her crazy stories, listen to her outbursts of noises, crying to go home cause she hates it here, bring her to the bathroom, she cannot go by herself I must basically carry her there put her on the toilet hold her up while I wipe clean and pull up her depends. Oh she does help by holding the walker. Then bring her back to her chair. Give her her meals, do the tv remote for her cause she says she doesn’t know how, she says that for everything, that’s not new I heard that my whole life. But I do catch her at times changing the channel or shutting it off, but it wasn’t her, it is one of her Imaginary people who live with us.
people become empty nesters, well I never did my daughters moved out on their own, then it started all over again being a caretaker for my mother.
such is life!
I understand that you are on high alert because you are the one responsible for the care.
I had to take breaks. On weekends I would make her breakfast and head to the farmers mkt and come home and make lunch for her . When she slept in the afternoon, I would hang with a friend or take a walk. I did use paper plates and streamlined my cooking and got take out. I did get some help with cleaning the house once a month.
SO you have my permission to get a break and get hospice/pallative care ASAP with the help of Primary Care Dr. I am glad that I took care of my mom but know it is time to get more help. You are doing the best you can but it is a changing picture. You are in my thoughts and prayers
As only one human, you cannot be available to help another 24/7/365 because eventually YOUR own health will be at risk. I realized this on a day when I couldn’t get anyone to come over and be with my loved one in order for my own self to go to the doctor... I was so entrenched in caring for another that I couldn’t care for myself — and how is that helpful?? It isn’t - if I died or was too sick to move, I couldn’t help them anyway. And what good is that?!?
For everyone involved - yourself, your loved one, anyone who loves you... consider Assisted Living. There’s a team of folk to care for your person 24/7/365. They work in SHIFTS and are able to go home and rest in between said shifts in order to best serve your loved ones needs. There are other residents around for the social aspect. Laundry, cleaning and cooking are done for them. Someone checks in on your person and their health regularly. There is a plan of care established the moment you sign paperwork to ensure Optimal Care. Obviously choosing the best place and figuring out the financials is the biggest challenge, but it was the Best decision I ever made.
My concern is for your physical and mental health. In my case I didn't do/don't do nearly as much as you but being the solo 'on call' daughter took a tool in a sneaky way. First it was flare-ups of my usual physical bugaboos ( old injury, that kind of thing ) which has not helped, but then I started getting really bizarro physical symptoms which culminated in getting tested for vulvar cancer. No cancer thank god, but that was the wake up call! And I did good self care too - it was pure stress that did it! I've had to step back and am still trying to get my footing while being responsible for mom.
People here will support you while you take steps to take better care of yourself! You're worth it. Many blessings...