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Let me ask you a question and I want you to really think about the answer.

What happens to your mother if you die?

I believe it's 40% or so of caregivers die before the loved one (or ones) they are caregivers to. There's an even higher statistic and risk for elder abuse when the recipient of the caregiving has dementia and they live together.

So think about what happens to her if you go. Your family won't help out with the caregiving now. No one is going to step into your shoes and take it over.

She gets put in a nursing home/memory care. This is what happens if something "happens" to you. So this is what you do with her now.

Put her in LTC while you are able to be an advocate for her and make sure she gets good care and is treated decently. You can visit her often and still do much of her care. The best part of this is you won't be responsible for all of her care and needs 24/7-365. You will get to have a life outside of caregiving. Even hire a private caregiver/companion to work a few hours a week to help her in the LTC facility. Even if it's just for company.

Please look into placement for her. Tour a few facilities and check them out before you get burned out so bad that you have a nervous breakdown or worse.
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AlvaDeer Oct 4, 2024
I second all of this.
It is impossible to do what should be done by three shifts of multiple caregivers. One person cannot replace what is needed. It isn't sustainable. Burnout is inevitable, and death is possible. Burnt and I are on this Forum long enough to see the stories of devastation, of illness, of despair.
Please don't attempt this.
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It often isn't easy no matter how much I am (was) aware of it. With that said, I spent quality / focused time finding / securing volunteers to support my friend-companion to visit him (in a nursing home) which gave me two days a week 'off' to myself / a respite.

* Contact volunteer organizations
* " Churches; ask for volunteers
* College students can often use experience which helps on their resume (geriatrics, nursing, social workers). Contact dept heads.

Gena / Touch Matters
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SoulSurvivor,

What would happen if you left her alone for a few hours?

You need to figure out what you are able and willing to do, and what are not able to do, then Don't do more.

Let other family members know what you will and will not do. Then, make a plan and stick to it! If the siblings are concerned about her needs being met , they can help, or hire outside help. If no one is willing to do it, then mom will simply be on her own for some things.

If you leave mom alone for a while, she could fall, she could go hungry, she could be unhappy. That's the reality many elders face because they don't have someone like you looking after them. It may be time for her to go to a care home which can meet her needs and keep her comfortable.
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You prevent burnout by taking care of yourself. Make your health a priority: doctor visits, 7-9 hours of daily sleep, 3 healthy meals are a reasonable pace (not gulping them down quickly to do more tasks), and making sure to maintain healthy relationships outside of caregiving. Yes, this requires time away from caregiving. Yes, enlist help from family, friends, faith community and paid help. If your loved one does not have resources to pay for help, then help him or her apply for Medicaid - and Medicare right before reaching age 65.
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One of the problems with the ‘24/7 365 days’ caregiving workload is that you don’t have the time or freedom to find out what else is available to help. This site may give you ideas about what other people have found, but not what is available locally for you.

Could you call APS to say that you are approaching burn-out, which will not be good for the care you can continue to give? Don’t tell them that currently it’s excellent. When they turn up, ask for all the local options, with phone numbers and contact details.

When you go out to check on the options, tell your siblings that you will be gone for the morning, and they will need to cover the care for M while you are out. Don’t ask, tell them.
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SoulSurvivor: Perhaps home health can be added.
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If Mom's primary care physician will prescribe home occupational therapy order it. It will get Mom used to being around others. We also had home physical therapists and also speech therapists coming around to the house.

It sounds like Mom has money. At a minimum I'd get an agency to send someone in 3 or 4 hours in the morning to get Mom bathed, dressed and breakfasted.

When you start with an agency call the CNA's your friend. "My friend will be helping me out"

Can you schedule yourself 2 weeks of vacation to visit your kids? Have the siblings cover?

Everyone deserves 1-2 weeks of a real vacation a year.
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We started off with 5 hours of free home healthcare from the department of aging, then found another organization to give us another 8 hours. If you can find organizations in your area to provide some free help like we did, you could have a break.

Then my family didn't put it all on one person, it is split between multiple people.
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“The pt asked if we needed occupational therapy help. I definitely think we do, though siblings thought it was best that I keep up with that. 🤦‍♂️”

I saw this as a response to one of the responders.
THIS is completely unacceptable. No one but YOU can decide what you will do.
Never turn down help that insurance covers..Never allow anyone else to speak for what YOU can “keep up with”.

Contrary to appearances, you are not an indentured servant.

The very idea that you did not override this mistaken idiot shows just how burned out you are.
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ChristineS Sep 24, 2024
When my mom first came home from rehab, I set up the Wound Care people to come and I was traveling out of state and found out when I came home that my brother was at the house when they came and he sent them away. I set it up a second time and I was traveling again and twice my brother sent them away. he thought we could handle this on our own, I had the conversation with him about getting Mom And Dad used to having other people in the house and we tried a third time and it was wonderful and it was wonderful after that but we had to have that uncomfortable conversation between us. I think most siblings want to do what’s right for the parent.
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Hi soul survivor , my Dad is a man that didn’t want strangers in the home with He and Mom . But then … Mom had a fall and broke her ankle - once she came home from rehab we had wound care , PT and OT come in. Dad was happy to see these wonderful people attending to his wife and love of 65 years . It also got him comfortable having others in the house . Fast forward to when my brother and I were getting burned out , we hired a family member to my brothers girlfriend ( retired nurse ) that we trusted and day 1 mom and dad welcomed her into the house and looked forward to her visiting 3 days a week . It’s been so much better on my brother and I and truthfully for my parents . They notice when we are stressed and they feel guilt over it and they shouldn’t feel badly about things they don’t control ( like aging and needing help ) . My suggestion - start introducing people into the mix .
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Please look into personal care homes. 24 hour custodial care is a blessing.
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SoulSurvivor Sep 25, 2024
I will, thank you for the suggestion. I will definitely look into it.
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Hi soul surviver, welcome!

Just to start with, I would figure out what you are willing, and capable, mentally and physically to do and never go beyond what you can do.

It's great to do for are loved ones, but first and foremost you have to put you first!

And when you figure out how much you can do , then you have to make a plan to get help with the rest. People on this forum have great ideas and places to go.

I would also suggest that you stick here, and just read old post for a while. There is so much information here, and support, ignore the stuff you don't agree with but soak up the stuff you do..

Also I want to add, think about the future, which when I came on I was only thinking about today and next week. I was shocked at how many people did caregiving for 10 plus years, it really opened my eyes that I needed to put much more boundaries down now, instead of waiting until there are more and more setbacks.

My family now knows exactly how much I'm willing to do now and how much I'm not willing to do. For example when I came on here, my brother was made because he had to leave work because I wouldn't bring mom to doctors during a snow storm. They definitely get that now.

Let us know more about, who your taking care of, and there health issues etc....

Oh yes boundaries are a must!
Best of luck
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FixItPhyl Sep 24, 2024
Such sound advice, as I too was shocked at the percentage of folks dealing with this over many, many years!!! Yikes! It helped by put things in perspective and start setting healther boundries with my self-absorbed, 93 yr. M.
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Check your newsfeed , I responded to you on another thread where you had posted your very first post , more details about your situation.

You are allowed to stand up and say I can not do this anymore. You do not have to fulfill Mom’s request of staying in her home without accepting help from others besides you or because she doesn’t like being around strangers .

I’m very saddened to read on the other thread how this has impacted your children’s mental health and your relationship with them .
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SoulSurvivor Sep 25, 2024
I’ll check it. Is it easier posting on a computer rather than a phone?

Yeah, I definitely think I need to. There are not enough boundaries at the house.

It definitely has been difficult for them. I am thankful that they are in a good place right now and recovering from the environment they knew too long. My elder child is close to their sibling and feels that things will get better. Hopefully I will have more time with them soon, but we really enjoyed the few days we had for summer together.
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I was told right away, by people who had tried it already, when I took on the care of my mom that I couldn't do it alone. You can't either. You have to find help. Look into home care for immediate help and start researching facilities. Of course she does not want to leave her home. But it isn't a want now, it's a need. Ease her into having more help instead of just you. You can be her advocate, help with getting everything set up for her. I didn't see here that you have POA or guardianship. If you are the one doing the care to make final decisions you need to have the authority. Banking, medical, all of it.
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SoulSurvivor Sep 25, 2024
They had some good advice for you then, I agree. I can’t do it alone. My siblings are helping out a little more, but I’m definitely still feeling burned out. Good idea on searching for facilities. I used to take her to appointments though another sibling does that now as she was causing too much drama at the offices. She doesn’t have a poa yet.
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IMHO what you are attempting isn't sustainable. I think if you stay around on the Forum and read posts here it will help you realize that. You tell us in your profile that you suffer from a heart condition. You are already worrying that this isn't going to work. You have hard decisions to make that only YOU can make for yourself. I wish you the very best.
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SoulSurvivor Sep 19, 2024
Definitely, I am beginning to realise that. The threads are helpful. I have asthma, anemia, low blood pressure and some conditions that complicate each other with stress. Ironically, my siblings don’t have any. My mom has Afib we recently found out. That is very true. Thank you.
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Does your Mom have a PoA? If so, who is it?
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waytomisery Sep 19, 2024
Good question .
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Thank you. It’s a good feeling not to be alone on that. I understand.

Yeah, I think I was as well. I left home for a decade, went through a rough divorce and had young kids. I came back for a bit, Mom thought I needed to stay permanently though we don’t get on. I got on with my dad though. She wanted to move to a home with him, but that didn’t happen so she’s still clinging to the house basically.

yep, I get praised for my efforts sometimes and then they march out the door to go somewhere fun. I would prefer not to have to be a caregiver 24/7. It’s up in the air right now if we can get more help in with her medical issues. Afib is one new thing
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waytomisery Sep 18, 2024
They keep praising you so they don’t have to do anything .

So long as you are the solution , your siblings and Mom are happy with this arrangement .

What would happen if you said you were going away on vacation for a week because you needed a break ? Would they be willing to fill in ?

Also many assisted livings will take Mom on respite care so you could go away or just stay home for a week and get a break . If Mom has the money this could also be a trial that turns into permanent residency at some point .
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Hi welcome .

Is there adult daycare available near you so you can get breaks ?

Does your mother have money to pay for caregiver aides to come to the house so you get breaks and get to leave the home ?

It is important to take care of yourself ( I know easier said than done ) . Make sure you go to your doctor appts. Eat well , get sleep .
Try to keep in touch with friends , hobbies , get out for walks etc . All the stress reducing things we see written about .

There are multiple threads that address this exact question . Look under the burnout section to read more ideas .

If your mother can afford it , it wouldn’t hurt for you to tour some memory care facilities so you know which ones you prefer ahead of time , should there be a reason you want to or need to place Mom in a care home.

Edited ….add ons .
You don’t say how much hands on care Mom needs , if she can walk , feed herself etc . Just FYI , thinking ahead if Mom does not have money for memory care , when she gets to the point she needs a lot of hands on care , feeding , in a wheelchair , Medicaid will pay for SNF in any US state . Some US states Medicaid will pay for assisted living /memory care , although most don’t .

Also you could look for a local in person support group for caregivers of Alz/dementia sufferers .
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SoulSurvivor Sep 18, 2024
Hi, waytomisery, and thank you.

Im not sure if there are some places for adult daycare. I’ll take a look online. She has pt these days, and my siblings stop by a little during the week. I can’t leave the house unless someone is with her so I don’t get out much. I think so on affording care aids. The pt asked if we needed occupational therapy help. I definitely think we do, though siblings thought it was best that I keep up with that. 🤦‍♂️

I definitely try. Agreed, that can be hard. I try to keep up with doctor appointments and friends. I’ll take a look at the threads. Thank you for that suggestion. I’ve been taking a look at the narcissistic mom threads.

that’s a good idea. I have seen some of the care homes available and my late father left a plan for her if she needs it. I think they have some tour options available. She hasn’t wanted to leave her home of 40 years.

Edited: Oops, Mom is 86, finally uses her walker and wheelchair, her legs give out often so she has had a number of falls. She can’t dress herself without help, needs help in the shower and getting into/out of the elevator. She can feed herself, but she can’t cook anymore or serve herself anything. She gets confused and agitated often, less around my siblings. That varies too though. That is good to know on the options.
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