My brother and I care for her 24/7. We don't have any family where we live now. We are able to have two 3-1/2 hour days each week and have recently added an evening of 3 hrs. The problem is that our mother hates us to leave her with anyone. It feels like I'm leaving a child with the babysitter each time we go out. She breaks my heart but it's not really so much time for us. She has been the best mother. I have tried to explain things to her and she seems to understand at times but then I wonder why I even bother as she's only going to forget everything I said. She has told me she doesn't want us to leave her with anyone. When the caregiver gets here my mother will at times close her eyes and say she's sleeping. At times she's okay when we get home but we don't know what went on while we were gone. Thinking of getting a camera that's disguised as something else. But the other night when we went out for close to 3 hours she didn't want the caregiver and she wasn't being friendly. We don't know if people will want to stop coming over with her attitude. Does anyone else have a similar situation? Does anyone have any suggestions on how to help our mother to understand we need to get out and will be back soon? And how to help her to be nice to caregiver? Thank you

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Here’s my take on caregiver guilt: All too often, we take the SUCK of the situation and blame ourselves for it. But reality is that your mom is no longer capable of rational, reasonable thought. But this is not your fault. Place the “blame” for this upsetting situation squarely where it belongs — on this terrible disease that robs us of our loved ones. Keep getting out. Thank your caregivers profusely, and pay them well. Forget the camera unless you suspect abuse; you don’t need to carry the burden of supervision with you on your short outings — enjoy them! And hugs to you, Karyll. This is hard, hard work you are doing, but it’s good work and work you won’t regret. ❤️
Helpful Answer (2)
Reply to FarmJelly

She has advanced dementia, you will not be able to get her to understand. She is not able to think or reason. Do you attend any sort of caregiver support meetings?

Yes, you need to get out and will need caregiver for mom. Just like when your kids were young, tell her you are going out, when you will be back, without any sort of explanation, and just go!

How old are your kids? Are you burnt out? Do you get easily frustrated? Are kids angry with the situation? Maybe it is time for mom to have 24/7 in a facility where she will get care she needs, you will be a daughter again, and your children will get you back.
Helpful Answer (3)
Reply to gladimhere

Totally agree with cwillie. My mom has Parkinson's and developed dementia, the doctor told me to think of her like a 5 year old, because that's where she is cognitively. Definitely take the respite, it isn't that long and it's imperative for your health.
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Reply to kbuser

Your mother has advanced dementia. Expecting her to understand what 'back soon' means or to welcome caregivers she doesn't recognise is... futile. She can't.

You DO need respite breaks! But the thing is to make sure the caregivers have the skills and understanding they need for the situation. What sort of caregivers are you hiring? Are they trained?
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Reply to Countrymouse

Hi Karyll
Good to see you back on the forum.
I think it’s too much to ask of your mom at this stage of her illness to remember what you are telling her.
Having a caretaker that you trust, that treats your mom well and is experienced with dementia is probably the best reassurance that mom will be fine. Also if your mom can see the same caretaker often she will become more comfortable with her.
Cameras do help although I see no reason to hide them. We are all on camera these days as we go about our business. I have them for my aunt and they are useful to make sure she’s up and about. That her aide is there on time etc. in your case it would hopefully help you see that your mom is fine.
If you arent familiar with Teepa Snow, do a google search and watch some of her videos. She is a master at communicating with dementia patients. You might also suggest Teepa to the caretaker for better communication between the three of you.
But expecting mom to understand may be setting your expectations too high.
Take comfort in knowing that your getting out is helpful to you and brother and mom.
Helpful Answer (3)
Reply to 97yroldmom

Dear Karyll,

With advanced dementia your mom is unable to understand other people's needs. She is unable to understand that you need to get away and that you'll be back.

You have no control over how she behaves toward the caregiver. Are these caregivers friends or family? You said you were concerned about people wanting to stop coming over because of your mom's attitude. If you're hiring professional caregivers don't worry about them, they're used to difficult clients. That's their job.

That your mom isn't friendly with the caregivers isn't a problem. If your mom threw things at the caregivers or spit on them or screamed at them the entire time, that would be a problem. But unfriendly? That's not a big deal. No one expects a person with advanced dementia to be a hostess.

Keep getting out. You need to get out. It's OK to leave your mom with a caregiver and as long as you trust the caregiver you can enjoy your time away.
Helpful Answer (4)
Reply to Eyerishlass

You mention leaving a small child at the sitter, that's exactly the way it is. You need time away to run errands, have respite, just to live - that's reality. She can't be alone, that's reality too. Stop explaining why, just state the facts - "mary's here to sit with you mom, I'll be back at 2:00" and out the door you go.The less you discuss it the less time you have to tie yourself in knots feeling guilty, your mom will may not enjoy it but she will be safe. And good for you for getting respite, take as many hours as you possibly can.
Helpful Answer (5)
Reply to cwillie

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