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 an only child of one remaining parent who needs a lot of care. She, however, lives in a Memory Care Assisted Living home until her money runs out. Then I will apply for Medicaid to get her placed in a Skilled Nursing Home. There is no way on God's green earth I have the desire or the ability to care for someone in my mother's situation, with moderate dementia, incontinence, is wheelchair bound, and requires help with EVERYTHING all the time. Why are you doing this? You have way too much on your plate working full time, having a family, kids and husband to attend to, in addition to a mother who requires 24/7 care. There is no way to lessen the load or the pain you're dealing with unless you place your mother into care. There is only SO much of you to go around, so naturally, something/someone is going to suffer since you can only spread yourself so thin. It's too much to expect of yourself and your family. Look into applying for Medicaid or, if she has the funds, getting her placed into a private pay Memory Care home. My mother is VERY well cared for where she is by a staff of people who love her. She has stimulating activities every day, socialization, and 3 hot meals and 3 snacks to boot.

Wishing you the best of luck!
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Reply to lealonnie1

Our amazing, wonderful, faceless family here on agingcare! That’s how we do it, my friend. Here you will find unconditional, non-judge mental, helpful advice, luv, support and sincerity from the best people you’ll never meet. Here is where your sanity is salvaged and you’re never alone. You will laugh, learn, cry, vent, and share with others who truly understand. Opinions may vary, but camaraderie is unwavering.
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Reply to OUHyperop

I don’t do it. My mom went into a nursing home in July, and while that’s been a hassle in some other ways (oh, can I even begin to tell you about her many, many complaints???), there was just no way for her to stay at home anymore.

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.
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Reply to MissMemphis

I am also “an only child” taking care of my Mom with dementia for almost two years. Initially, I considered myself lucky because I was retired and had my husband and young adult daughter available to help. However, shortly after mom moved here my husband died and daughter moved out. Also, mom’s dementia worsened and made her very combative, incontinent (with urine and feces), and immobile.
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!
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Reply to EverHopeful1

I am taking care of my mom alone and her needs have escalated to needing 24/7 help. Wheelchair bound, I do all transfers (even when I have a caregiver from an agency, they refuse to move her), bowel care, plus she gets a bit needy. I found respite care through my local ADRC. They directed me to a grant through the county that provides roughly 4 hours a week respite. Care giving is the hardest job on earth, you just have to take it one day, sometimes one hour at a time
Helpful Answer (11)
Reply to kbuser
Ricky6 Feb 18, 2020
Have thought of getting a get u up lift to transfer your mom?
You say that getting paid help is too expensive. But what about the value of your own life ? How long can you go on doing what sounds like the job of three people ? (Full time employee, Parent, and Caretaker) Realistically, she will probably need even more care over time. No one can do it all.

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.
Helpful Answer (11)
Reply to Nancymc

Yes, give yourself permission to place her in a facility that has the expertise to care for her. I know how painful it is to do that. I made the decision in July to place Mom in an AL facility. She gives me the guilt trip every time i see her. However, it was the right thing to do for everyone. Good luck!
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Reply to Pr0f3ss0r

Yes, I am an only child and was the caregiver for both parents. Sadly, my dad passed away and after 57 years of marriage my mom withdrew and her health declined dramatically. I continued to work a full time+ job (balance that with incontinence and falling). I began to have heart issues and then turned to my mom's physician who somewhat took over. He had Medicare Home Health come out 3x/week for showers. While there, they would change her bed, clean her bathroom, check / fill meds, That's all good but aids quit often and there are good and not-so-good. Like you, there was the angst of *IF* someone would show up at the appointed day/time. I had guilt anxiety that I wasn't doing enough. SO...I get it! I understand your concern, stress, and work overload. Mom's physician realized **I** needed the break so he suggested we admit mom to a rehab facility, which is part of our nursing home. I recharged and guess enjoyed it so she was admitted as a full-time resident. She is no longer a prisoner of our house and has constant interaction with nurses, aids, and people of her own age. She is under constant supervision and they have better equipment for her care. This is about you, not me. I wanted you to see we are here to support you and let you know you are not alone. Many of us have thought we were doing the best for our parents (and tried) but it isn't always the best for all concerned. We have damaged marriages and relationships, our own health..mental and physical. My suggestion is to begin with your mom's physician or a geriatrician, then discuss your options with Department of Health and Human Services; they too are a great resource. If you have a local college, sometimes their nursing students would like to earn extra money and can help you during off-hours; you can work through the Dean of Nursing for names or suggestions. Good Luck and Chin Up!
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Reply to Bumberella

I am doing it. I’m new here and have just been reading until I saw this post. I had a stroke recently so it’s very difficult. My mom refuses to allow outside care to come in. She’s so paranoid. She also refuses to leave home. Demands to die at home. She is not a kind person at this stage. We never got along. My little sister died 14 years ago and dad died 5 years ago. Mom’s friend have all “disappeared.” Before she got bad it was all “if you need anything...” or “if I can help...”. Now they just don’t return my calls. Mom is 72, me 48. It’s very frustrating somedays. Extremely depressing others but I do see how this group can be a lifesaver.

Keep fighting the fight. Thinking of all of you CG’s out there. 🤗
Helpful Answer (9)
Reply to hdakers
keepingup Feb 18, 2020
The best advice I ever got from this wonderful site is to take care of yourself in any way you can. It is neither selfish not irresponsible. You have friends here.
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Don't beat yourself up if you can't do it any more. It's hard hard hard to make the decision to find a placement in long term care but none of us is superwoman and we all have our limits. 🤗
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Reply to cwillie

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