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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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Wow, this is a very tough situation! I do NOT know how you do it!! I wish I had some wonderful advice to make your life exponentially better.

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.
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It may be time to have your mom moved into nursing home. If money is an issue, contact your state's Medicaid office and apply for long term care for her. If there's a good NH in your area and there are beds available ( if not, go on waiting list), she will get 24/7 care and you can return to taking care of your children, concentrating on your job and having time for yourself and your husband.

** Just saw your question about an NH that has Chinese-Mandarin speaking personnel. Check around the NHs in your area.
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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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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
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Ricky6 Feb 2020
Have thought of getting a get u up lift to transfer your mom?
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I did it for 15 years. I was raising two daughters when mom moved in. I wish I could help you. I had to stop caring for mom because it became too hard. Please look out for your well being. Be very careful not to burn out..
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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.
xoxoxo
susan
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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.
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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. 🤗
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keepingup Feb 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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Look into getting SSI (Social Security Supplement)which is what I got for my mother in law in order to have her placed in assisted living.
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cetude Feb 2020
Assisted living does ***NOT*** cover hands-on care. If they require toileting this is nursing home placement which means putting her on Medicaid, and that is a very tough complex situation requiring an elder-care attorney.
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I have hired a caregiver thru an agency and I found that the agency coordinates the schedule for me. I have the caregiver 8 hours a day 6 days a week. She has been a total blessing and even cooks for my mother and I. When I first started caring for my mother 24/7 it was easy because some of my siblings helped then they quit coming so now it is all on me too! If your mother is eligible for veterans benefits that would help with expenses or check with the Council On Aging in your area.
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I am also sole caregiver for my 99 yo Mom. My only living sibling is battling his own health issues. But, I am so lucky, Mom is healthy, mobile (with a walker) and alert! But it still takes its toll on me, so I can’t even imagine the burden you are carrying.
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.
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I hope your mother is paying for the caregiver. Is she? How many times a night do you have to get up to change your mother's diaper?

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?
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You are a great person to care for your mom. I took care of mom for many years until she died at age 90. She needed a feeding tube at the end because it spared her of dying of dehydration which can take 2 weeks even under hospice. Ironically OTHER natural causes killed mom--not her Alzheimer's--with her feeding tube her body got much stronger, just no mind left. She was pretty much a person alive without a brain left; still she never suffered, and knew even at her much advanced state she was surrounded with love, her home, daily routines, and around-the-clock care.

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.
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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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I am also an only child who had to care for my mother with Alzheimer’s. The last time she was hospitalized, a doctor mentioned that she qualified for hospice in a hospice facility nearby. She was transferred there and died a week later. Is there a possibility that you have a similar situation?
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.
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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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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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Put her in a home. Your children, your husband, and YOU come before Mom.
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I am an only child also. I had to place my mom in a nursing home but I visit her often. Have you considered placing your mom in a nursing home?
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DJHN9hyi Feb 2020
First of all, God bless you abundantly. I too am an only child. I took care of my Mom also but had to put her in a nursing home. It was the best thing for both of us. Instead of her "caregiver" I became her daughter again. The CNA'S at the nursing home did all the work and I came several times a week to see her. We played games, watched TV, had dinner, visited the other residents and attended the activities that they offered. She adapted to her new life and I got my life back. She was only there for 1 1/2 years, but we both enjoyed our time spent together so much.
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There comes a time when you need to insist she move on to a nursing home. This is your life and not you obligation to do this. Your obligation is to your husband, children and and to yourself.
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I am an only child I was working but my husband is able to support us without me working. But working helped my sanity.
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!
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Daughterof1930 Feb 2020
“I really have no use for them unless I have an appointment or errands to do” I hope you’ll reconsider this. After reading your post I feel your exhaustion and emotional burnout. Your mother going to the daycare could be a huge break for you, one you need more than you might see right now. Even if you come back home after taking her and do nothing but enjoy the silence it will be time well spent
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I took care of my dad who had Alzheimer’s. When he fell, I couldn’t get him back up on my own, I would have to call for help, when he fell out of bed, he broke his femurs. I had shingles in my shoulder, my strength was not enough to be able to change him and clean him up, not to mention his cries from pain and hanging onto the bed rail with all he had because it hurt to move. I totally lost it when he cried out “ don’t hurt me”! After I quit crying I called the hospice nurse and they arranged to put him in respite care for me, this went to in hospice care. We knew he was going to die but I suffered from guilt because I wasn’t able to handle him being home. Don’t do this to yourself, please make arrangements for her to be in care somewhere else. Then you can enjoy her as your mom. I know it sounds heartbreaking but it really needs to be done. By the way, I’ve told my kids if I end up having Alzheimer’s they and I are going to look for a nursing home, I will not put care for me on them, it’s too hard on everybody.
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As you can tell, I am an “only.” I took care of my mother for a year, but she didn’t need nearly as much care as your mother does. My mother chose to move into an AL facility where she has some independence which is very important for her. She didn’t want me to sacrifice my life to being her caregiver. Rule #1: take care of yourself (which you are not doing) At this rate you will crash either mentally or physically. You need to make changes now before it’s too late. You’ll figure it out.
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Oh I hear you. I am an only child and felt that this was a situation that was too much for one person. Lessons learned after 6 years of having ADL help for mom so I could work. My mom just passed away and I now realize how burnt out I was. It sounds like your mom needs more care and you should get info on getting her on Medicaid and to a nursing home. I did not like the choices of nursing homes in my area and my mom did sleep at night. There comes a point where Mom needs more care . You can check with local hospice and pallative care alternatives. Talk to her primary care Dr and get information. I should have arranged for respite care but I did not know it existed.
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
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Our loved ones don’t want for us to have to give up our lives for theirs... if you’re sacrificing time, sleep, money, whatever it may be.... it’s TOO MUCH. There are Elderly Waivers and Respite Dollars available to help alleviate some of this and your local Aging Resources Center can help determine what you might qualify for.

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.
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I honestly don't think that one person can manage the load you described. I take care of my mom 24/7, but I quit my job and I don't have kids. God bless you for trying to do all of this.
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I'm right there with you as an only child and only caregiver. Well, my husband helped out when he could, which helped a lot, but still, the majority of her care fell to me: bathing, driving her around to keep her calm, walking with her, also, to keep her calm, feeding her, etc. When it became hard for her to get up out of a chair, we ordered an electric cushion for her, to ease her up from a chair. You should have seen the looks that my husband got, when he was trying to describe the dimensions to the postal worker who was looking for it. Hubby said, "I'm not exactly sure how big it is; it's an electric chair for my mother-in-law!" I even wrote about this funny anecdote in a book I wrote about our travails:"My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (Humor can go a long way; trust me.) On another note, you might get in touch with your local Aging Care services. Many counties and cities have them. Sometimes they have volunteers to come to sit with people. Best of luck.
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I see lots of responses I don't have time to read before work...but please, call your local office on aging if you have not already or your local area agency on aging for resources. I don't know how you are carrying such a load...and you also might want to connect with hospice. My mom is so far continent and semi functional but needs supervision. Her sundowning is not so much a safety factor concern, but it is very much disrupting my sleep. And that's enough to be a challenge for me which is nothing compared to what so many go through.
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Does your mom have Medicare? She might qualify to be in an assisted living facility that offers 24/7 care. Sounds like you need help. I know the last thing we want is to place our love ones in a facility but I don’t know how you can keep going with that schedule. I just lost my sister who was my mom’s main caretaker (she wanted to be the one to do everything for our mom). She was so depressed and cried about mom all the time. She went to sleep and never woke up. We think it was alcohol dug related. Now it’s all on me. I’m trying really hard to take care of mom but also don’t want to end up like my sister. Take care of yourself too.
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I have nothing specific to add here, but just chiming in that you have too much on your plate - do take the advice of the good folks here and get help for your mom/you...! You're doing the work that professionals do in shifts, with all the emotional attachment of mom caring to boot.

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...
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