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I’d like to know what steps people have taken or plan to take once they’ve realized full-time caregiving is no longer sustainable. Mental and physical health strains immediately come to mind. People who have felt “trapped” in their situations, only children with an elderly parent, etc. Has anyone had success transitioning into something more functional? Even if you are still caring, how have you lightened your load? Much love to all.

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I lightened my load by doing two things.

1) I learned how to 'Grey Rock'. In fact, I've learned how to grey mountain. Basic needs only. Food, clean and safe environment, medications. I refuse to be my mother's medical secretary and do not take to visit her doctor collection. I also refuse to be her entertainment and socialization anymore.
I just walk away and completely ignore her. She is not able to have even a basic conversation with me without instigating a conflict of some kind so I ignore her. Yes or no answers and that's it.

2) I got a job. I am not an only child so there's no reason why the whole burden has to be on me.

This is how I've lightened my own caregiving load.
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ZippyZee Oct 19, 2021
Grey Mountain. I like that.
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Starting point: To really look at the situation. What are the needs? How can these be provided for? What can I provide / what I can't?

For me it was a giant learning curve: multi-stepped, full of snakes & ladders!

Limited 'hands-on' care & sought replacement services.

Stopped being the 'fill-in' when services cancelled by choice.

Redefined role to 'emergencies only' not everyday needs.

Stopped being available 'on call' for emergencies when other options were available.

Redefined what constitutes an 'emergency'.

Quite different situation to 24/7 home caregiver situation though... But if the physical demands are unsafe/high potential for injury - call time. Same goes for mental/emotional demands.

If the care needs exceed what one person can do, add a bigger team to the home or moving to where a bigger team exists is the next choice.

You are wise to be evaluating. It takes courage to face a situation & wisdom to know your own limits. 'Love' or notions of 'family' are not enough.
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applejuice Oct 18, 2021
This is wonderful. Thank you for sharing some of your experience. I did write a list of all the things that I currently do to care for Mom so that I can see what could be done more efficiently or by someone else. That helped and yes, a total learning curve with all of it!!
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This answer is from an only child who provides 24/7 care for Mom (almost 90, low vision and bedridden.) And also, unfortunately cannot afford to hire care for respite or to help out with my Mom.

And, no matter how often others advise to ask friends, neighbors, church etc for help - that isn't going to happen in the real world. I've yet to find a single person on the planet willing to help for free for even one minute. And God knows, I've tried. Have finally given up that thought.

Here are some things that I've done to simplify things:
Mom has Meals on Wheels delivered. That's a really big help. Good nutrition, less shopping, cooking, expenses.
We also use paper plates at times. Less washing dishes by me. (No dishwasher here.)
I start the laundry while I'm in the middle of changing her. It's done by the time I'm done & it doesn't seem like a separate chore.
Since I am physically disabled also, I use a Hoyer Lift to lift Mom into a wheelchair from time to time. That saves on back strain, etc.
I take advantage of her nap time to do household chores, and often go online during the middle of the night while she's sleeping.
I do as much shopping online as possible, as delivery makes life much easier.
I've found a Doctor who sends a Nurse to the house for House Calls at a reasonable price.
And use no-rinse shampoo to help with her hair. I've learned to cut hair, but not very well. And have learned how to do manicures and pedicures. Not very well, but I try my best.

It took me a long time to realized that "it is what it is." There's not going to be any help for me. It's up to me to figure out how to lighten the load. The load is still heavy, but these tips have eased it some.

My biggest issues have been keeping up with the house chores. Hired a Gardener for the yard, & a handyman for small repairs, etc.
Both of these are much, much, much cheaper than hiring a Home Health Aide to sit with her.

I understand how hard this is for you, and one thing I've learned is to try and keep my mind clear from the stress and accept the fact that extra help is not available for me. And to have some goals for the future to help my mindset strengthen.
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Riverdale Oct 15, 2021
All your care and methods including scheduling is very impressive. I wish you and your mother the best possible under the circumstances you face.
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My Mom (and before he passed my Dad) have lived in my house since 2012. My brothers are out of the country/state and are not viable for covering for respites. So, I schedule and plan. I put forth the intellectual effort to help save the physical and emotional.

First thing I did was arm myself with an understanding of what problems will arise with the progression of illnesses for my Mom it is dementia. And accept that it is a one way road out of this life (I REALLY dislike when people compare dementia patients to children and babies. My "baby" weighs more than me and has occasional flashes of a past that included driving vehicles and such. All of which makes my life...interesting)

Then I studied what financial resources there are available and to be honest, it's not good. But, budgeting helps. I can afford an aide twice a week, GLORIOUS!

I used what I could to get assistive devices slowly as I saved up for them: hoyer lift, Bidet, transition pole next to the bed, etc.

Next, finding places to be in contact with others: this forum, Bible groups, a book club...whatever there is that lets you speak to other adults, even if it is online. But, if you can do in person groups, it is far better.

I moved my Mom over to my doctor's office and they are kind enough to have us both scheduled for an appointment at the same time, whenever needed...saves me money and travel issues. I just pointed out the issues with scheduling and since they knew Mom's issues...they understood.

It's difficult, but who really wants an easy life?
Remember to laugh at how absurd it all gets, cry when you need to relieve stress, and occasionally act like an idiot because we all need to do those things.
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applejuice Oct 18, 2021
It sounds like you’ve done a fantastic job of streamlining care to the best of your abilities. I love how you have phrased it…“I put forth the intellectual effort to help save the physical and emotional”. It makes so much sense. Very helpful and inspiring for me. Thank you.
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For me, I had to stop helping my parents when I had fallen and broke my arm. It was my primary hand so writing was like that of a 3 years old, same with eating, and it felt odd trying to brush my teeth using my other hand. I couldn't lift anything. Couldn't write checks. Heck, even dressing was a challenge. I could type left handed but using the Mouse left handed was comical, as I was able to go back to work. I caught a ride.

And I had to stop driving which was pretty what I was doing for my parents. I couldn't turn on the engine much less use the gear shift. Of course they looked at me and said "but who will drive us?". I finally had a good reason to say "not I". I started order groceries on-line, what a godsend, after all these years I still do that for myself. My parents were ok with cancelling all their doctor appointments, and believe me there were many. My sig-other did some driving for situations that couldn't be avoided.

It took me 3 months of re-hab to get my arm strengthen and back to normal after it had healed, the healing took awhile as I was a senior citizen myself. My therapist knew about my folks, and with a big smile he said, wear that sling whenever you are around them :)

Oh, I don't recommend falling off your shoes and breaking an arm !!
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applejuice Oct 18, 2021
Thanks for sharing your story! Of course I am sorry that you were injured and hope you have since fully recovered. The therapist comment is hysterical. The ordering groceries on-line is definitely a godsend.
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My sister and I are the primary caregivers for our mom who will soon turn 94, has vascular dementia, and has lived with me for the past 12 years. My husband was also a part of our care team until his passing in 2018. My sister's husband has been having health issues which precludes her from helping with mom, and I knew there was no way I could care for her alone. We sold mom's house--which we had been renting to my brother (who has been no help at all) so now he refuses to speak to either my sister or me since we "kicked him out"--so we could afford to hire a caregiver. We found a private caregiver who now comes 5 days a week, Tues-Saturday from 10-5 to help with mom while I work and run errands. We pay her more than she was making while working as a caregiver for a company, but less than we would have to pay the company had we gone through them. (She had already left that company and went into private caregiving, so I didn't hire her away from that company.) At 5 p.m. I roll into caregiver mode and take care of my mom throughout the evening and night. (Sundays and Mondays I'm on my own with mom.) Our caregiver is amazing and is not only mom's caregiver, she helps with everything--laundry, cleaning, cooking, you name it. Before finding her, I'd been through several caregivers who were content to just sit on the sofa and play Candy Crush--even ignoring mom's needs at times.

There is no right or wrong way of doing things--you need to do "you" and find out what works best for you. This is what has worked for me...

Since I'm the sole caregiver a couple of days a week, I moved my office set up (I work from home) to the living room where I can be closer to/keep an eye on mom. It's not ideal, but it works.

We put slide locks at the top of all doors so that mom can't wander outside, and replaced door knobs on interior doors so she can't lock herself in. (Getting her out was always so much fun, though! LOL)

I've re-assessed my priorities, and have come to the conclusion that dust bunnies have never attacked or murdered anyone, so I've learned to live in harmony with them when needed. My house is not pristine by any means, but it is clean and safe for my mom.

I buy extra sheets for her bed when they go on sale, and make up her bed in layers--mattress pad, fitted sheet, incontinence pad, flat sheet, mattress pad, fitted sheet, incontinence pad, flat sheet, etc.--so that when she soils the bed I only have to remove one layer (down to the next set of clean sheets) and throw on a clean blanket (instead of having to remake the entire bed at 3 a.m.).

We keep several sets of mom's clothes in the bathroom, so we don't have to run back and forth when getting her bathed and dressed or ready for bed.

We reached out to local churches and others who have gone through the same thing, and were able to get a wheelchair, Hoyer lift, and other supplies that they no longer needed for free. I was amazed at the offers for equipment that I received; people really do want (and are happy) to help. I promised to donate all the items to others in need once we no longer needed it.

I contacted a few social workers as well as the Dept on Aging, and was able to get incontinent supplies, gift cards, and respite grants.

There are days when mom refuses to change her clothes, so we clean her up and let her stay in her jammies all day, or sleep in her "day clothes" at night. We've learned to choose our battles.

I found a local guy who will help me with yard work and handyman type stuff for a reasonable rate, and stopped trying to do it all myself.

It's been a journey, for sure, but we're doing our best and, according to her doctors, mom is thriving. I get exhausted, frustrated, angry, depressed, and would loooooove to be able to take a nice long bath in the evening (which never happens), etc., but I know this won't be forever.

Good luck in your journey.
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I searched for resources that would make my "job" easier.
My Husband was a Veteran so I was able to find an Adult Day Care that the VA had a relationship with and his Day Care was covered.
After he was "kicked out" of Day Care I had to find something else. I did private pay on Day Care at a local Memory Care facility that I talked into taking him for 3 or 4 days a week.
Through the VA I got a set number of hours of In Home caregiving so that I could get out. This continued for a while.
Then I found out about another program focused on keeping Veterans in their homes and with that program I was allotted a certain budget and I had to choose services that would be paid for from that budget. This allowed me to have more hours of caregiving. The catch was I had to hire them privately, the company that did this though did background checks and they took care of all the paperwork. Taxes, insurance....Life saver if you ask me. Along with this I had Hospice. I got the equipment that I needed, the services of a CNA, Nurse, Social Worker, Chaplain and Volunteers if I needed or wanted them.
Hospice alone was a gamechanger They arranged the equipment delivery, they ordered supplies and they were delivered, they ordered medications and they were delivered. (I think so many are afraid of Hospice that families and patients are not able to take full advantage of all it has to offer. It covers Respite care if needed. that is a huge perk)
With all the help I had there were only a few times when I felt "trapped" that was when one service had been discontinued for one reason or another and before I found another. And that was the time when it became more dangerous to take my Husband out to the store. I could not safely get him into the car by myself.
The help I did have though was from 9 am until 3 Monday through Friday. Nights, Weekends and Holidays I was solo. But he was always compliant so I never had a problem using equipment by myself.
And my Support Groups helped a LOT!!!
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THEIR HEALTH:
I took care of both my parents in my home, for 10 mths. They were on a cocktail of meds and while in my care never saw a doctor nor took all the pills in their blister pack. My father before living with me was on a monthly schedule of blood transfusions, once with me he no longer needed them since his red blood count went up to normal. He was in the doctors care with congenital heart failure, spinal disease, and 2 other major issues which now I cannot remember sorry. Before moving in with me the doctor had a conversation with my sister and my brother on separate occasions basically giving the impression that my father was on his death bed and would not last. Yet under my care he has lasted 1 year & thriving. Of course his aging continues and there is decline :). My father did what he wanted with his meds, (being stubborn), for my mother I administered to her and gave her only her diabetes pills, I monitored her blood and believe that she does not need them either, she is a strong women with a weakened mind and physical pain because of 3 night drugs she takes for sleeping and pain??, one being Oxy another an antipsychotic drug and another sleeping pill, her main complain is pain, but due to habit and age she never moves which causes more pain. And Oxy creates more pain, thank you doctor. The doctor tried to get me to give her insulin, which I did and her blood sugar started to climb, so I stopped . They had her on meds for cholesterol, high blood pressure, stomach issues, and it turns out she did well without and still is not taking them. I know this because they had blood tests done while under my care, both came back fine, strangely my mother's blood sugar the doctor says was at 10, and that is the one thing she was taking her pills for. I did speak to the doctor over the phone sometimes, only because he would call, otherwise there was no reason for them to see nor talk to him.

I did everything for them, cooked, cleaned, shopped etc,, you get the idea. I was burnt out, not because of the work but the emotional work it takes to care for 2 uncooperative elderly parents. I had no outside help because drama would surface if I even mentioned it. At the same time I run a small business and my husband works. My parents like drama and were very uncooperative and created a lot of it with my siblings involved. They constantly threatened they would leave and so with the help of my sister, at their constant request and harassment, we found them an apartment. You see while they lived with me, they did absolutely nothing, and gave the impression they could handle nothing, that is why they moved in with me and that is what I believed, and everyone was under the visible impression that my father's days left were few.

They are now living in a condo complex that my sister lives in also, we found them a rental unit. They cook and do the dishes for themselves, and are quite capable. My sister helps with cleaning and groceries and I take care of all their administration.

The best situation, if possible is to keep them in their own place with outside help. Our situation is perfect for us, because my sister is 2 floors above. She is not living with them, and can retreat whenever she wants to her own sanctuary which has not been affected by their negative behavior.

It's been 3 weeks since they moved out. I have yet to visit them, will be visiting them tomorrow. I have spoken to my mother over the phone, and her tone towards me has changed. I guess they never thought I would agree with them and help to find them their own place. Of course it is harder on them, doing some for themselves, but, their whole time with me, they behaved like they were miserable with me. This is my guilt talking, justifying. Overall I think everyone is better off. It is not a good idea to live with your parents as an adult. I do things differently & I think differently than them. This offended them. Everyone as an adult should have their own space.
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Nonstop Oct 19, 2021
Sounds like a disaster lol. There's only a small chance they will make it in that apartment by themselves with a relative upstairs checking in from time to time.
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It is wonderful for all those who have a support system of family/friends. We do not. It has been just my youngest daughter ( 39 ) and me who live together with my mother ( 96 ). It was hard bringing mom here to live with us, and then things got better for a long time. Now over the last year, the sundowning is every day and earlier and earlier. Mother was always a negative, narcissistic person to begin with and more and more frequently is just really bitter and acting out.

Tonight took the cake when daughter fixed dinner ( really very good ). Mom ate part of it, and then was very expressively angry and we asked her what was wrong and she angrily tried to show me her plate accusingly indicating that daughter had put very little on it (after she'd already eaten probably half) and boy was she fuming!!

This is it. It has been only 5 years here, but I am definitely ready for her to go live somewhere else. Even before dementia, my mother was always a negative person. She was never a happy person and always saw me as the extension of her. She was jealous of my relationship with my children, and I have done what I can. But now, it is time for me. I am a young 67 and "retired" early last year throughout this pandemic to be here with her. I want to live my life now, go back to work, and have a bit of life outside of home. Now I will start visiting some places to figure out what she can afford. I am really down tonight, and I have always been a "happy person".
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Are you wanting to move out? Or get in home assistance for your mom? Or is she ready to be placed somewhere?

You can work on figuring out what needs to be done. And then set some boundaries of what you will and will not want to do anymore, find someone else to fill those needs.
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applejuice Oct 15, 2021
Thanks, that makes it clearer. I don’t need to move out, I just need any kind of break that feels safe. I guess I need to delegate chores, companionship and things like that.
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