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 am disabled and knew i couldn’t take care of my mom so she went into assisted living. Even then I was running to the home all the time because she was in and out of the hospital.
I now care for my Autistic sister after my mom passed and she lives with my husband and I. Every day is a challenge.
if you want to chat, I’m here. Good luck
Also maybe even consider it a blessing that you may make decisions as a sole child. Having siblings can be helpful but also can complicate decisions.
I work full time care take full time and there are times that I want to give up. No one helps me beside the youger lady that I and recently and FINALLY have been graced with
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!
Does she have Medicaid, or does she receive VA pension? There are services available if they have either, unfortunately Medicare (unless u have a supplement that does pay) much of anything for seniors in this condition😥
It is difficult and doing it alone is definitely overwhelming.
Explore your local senior services agency for more help in daytime and then maybe hire someone for night duty. All u can do is the best you can.
The emotional toll is seriously draining. You may need to consider placement in a facility, before you say absolutely not, ask yourself, if she were in her right mind would she want u to live like this?????
Sometimes we have to place our loved ones. I want to keep my dad in his own home as long as possible but the the may come that I do not have a choice if 24 hour caretakers are not affordable! Hugs and prayers for ur strength
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...
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.
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
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 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 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.