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GBpacker Posted April 2020

I'm Tired...

My mom has had dementia for 5 years now and I have been retired for 2-1/2 years now and taking care of her in my home. She's getting worse to the point I can't take it anymore, I'm single never married no kids I should be able pick up and go when I want to but can't because I have Mom. I have four siblings and none of them help me with mom they all live out of state and mom never wants to leave.
So I get the double whammy they figure I'm the single one of the family and
they say what the heck, he can take care of mom. The one that sometimes does help me is the older sister of the two. Every time I talk about a home, mom gets all worked up so I don't know what to do. I never thought it would be this hard to be a caretaker.

Frances73 May 2020
There is no easy answer, especially now. Start checking around to find a facility now so you will be prepared. Ask family, friends, religious community, doctor's office, etc. Call A Place for Mom and ask for recommendations. There will be a point in time when you will need the support and you should be ready.

Some facilities offer respite care of a week or more. I believe Medicare will pay for this. I convinced my mother to take a "vacation" in a local AL to test it out while I was out of town. It showed her what it would be like without making a commitment. Then we toured multiple facilities, had lunch, talked to people, etc. She chose the one she was the most comfortable with.

Don’t talk to her about a "home." Talk about the advantages to her. 24/7 supervision, social interaction, activities, meals, housekeeping, laundry. Assisted Living may be an option for your Mom. It's for people who are fairly independent but need some assistance with daily life.

Guilt works too, my blood pressure started to increase when Mom was staying with me and that got her worried for MY health.

It took about 6 months for her to feel settled. It’s a big change but worth it for all concerned.

I realize this advice might be difficult if not impossible right now but you could start the discussion now. Mom's doctors all told her it was the best choice for her, advice she took to heart. It’s hard for a parent to take advice from their kids! And it’s a big, scary step for an elderly person to take.

Good luck.

Beatty Apr 2020
Mum needs round the clock care (or maybe not just yet but her care needs are increasing).

GB, question #1 Does it ALL have to be done by you?

At some point (now?) it gets too much for one & more helpers must be sought. It takes a village. So either helpers come to her or she moves to where the help is.

Those with big families of willing caregivers living nearby may avoid paid helpers for longer but even then coordinating a team becomes hard to manage. And you just don't have that.

So question #2 Will you 'rock the boat' by standing up? Standing up for yourself, your needs & your life?

Consider it - please don't sink!

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Llamalover47 Apr 2020
GBpacker: So even though your siblings say no to the caregiving, one or two of them may HAVE to be the respite now that you so desperately need. Sorry, respite centers may be non operational during this Novel Coronavirus.

Llamalover47 Apr 2020
Good grief! You need respite badly, else you drop over and faint. Locate a respite center near you. Prayers sent.

Texasgal Apr 2020
I feel you - I'm the youngest daughter and this caretaking has basically been dumped on me for what seems like forever. My mom is 93 and has moved back in for about the past 3 years. I SHOULD be able to go out, have people over...DATE! (What the heck is that?)..but pretty impossible to do with her in my home that watches every move I make. I was supposed to go out of town - had it all worked out then..PANDEMIC HELL! I can't do the things that used to bring me joy - and happiness like see my friends...go out to eat. If I have to listen to Wheel of Fortune one more damn night! Geez today is really bad - as I feel like I'm losing it. I'm trying to find things to be grateful for - which are plenty. I'm still working, have a home, decent health. I just want FREEDOM!!!! Anyway just thought I'd reach out...I'm needing to vent. Feel free to reach out. Peace!

Taarna Apr 2020
Seems you need to reevaluate your situation.
What do you want to do with your life - with mom and without mom?

What areas of your mom's life does she need assistance with right now?
Please be aware that with most types of dementia that you loved on will increasingly need more help.

What are the resources that are available to help and their costs?
Look into assisted living, memory care units, home health care aides and respite care. Ask your family in what ways they can commit to helping with mom's care: finances, weekends, longer visit (respite) in their homes or yours... Friends and faith groups can also be of assistance. You may not need any "total care" assistance, but it helps to know all your options.

Consider how much "time away" from your loved one you need to maintain your mental health. Consider how much "time with" your loved one may be needed for her physical, mental and emotional health. Create a plan that meets both of your needs. You can do it!

Grandma1954 Apr 2020
How would you like a little "vacation"?
There are plenty of facilities that will offer Respite care. Now you might not be able to get her into one right now but start your planning. You will probably have to take her to the doctor, or at least get the doctor to fill out forms indicating she is in good health and the medications she is on. She may also need a TB test.
1 week in respite and you can decide then to place her permanently or would a week off every 6 months work for you?
The nice thing about placing her in Respite is you can see how she might adjust and you can see the care that she would get.

And..does mom qualify for Hospice? Forget about the "6 months or less" usually as long as there is a continued decline Hospice will keep a person on their service. They do have to follow Medicare guidelines though. My Husband was on Hospice for just under 3 years. And Medicare will pay for Respite when a person is on Hospice. And you will get help. A CNA will some in 2 or 3 times a week to help with a bath, changing bedding, dressing and personal care, a Nurse will come once a week to check her and order medications. Medications will be delivered to you. And if you need equipment Hospice will order that as well as supplies you might need. And you can ask for a Volunteer that will come and sit with your mom while you run errands.

As far as your mom getting worked up when you talk about a Memory Care facility that is common no one WANTS to leave their home but if you could ask the mom you had 30 years ago would she want you to be giving up your life, increasing your stress level caring for her?
Then comes safety. It will come a point where you may be putting your safety or her safety as risk trying to care for her. What happens if you get hurt caring for her...who will care for you and her? How would you feel if you accidentally hurt her trying to lift her, or transfer her?

(my Husband was the football fan..but BEARS all the way!..can't tell you how many dinners he had to buy when the GBP had a better year than the Bears!)

SisterCare1953 Apr 2020
The facility we have decided on was offering a transition plan (on hold because of "stay home/stay safe"). The plan was to start taking my sister to the facility for lunches and activities so it would feel more familiar when the time came to move her in. That isn't an immediately available solution but hoping for "near future".

Find a facility - see what their plan would be for placement and when a room will be available. Don't talk with Mom, but I would recommend speaking to the siblings - more in terms of "this is the decision I have made" than in seeking input. They are still her family and yours.

dogparkmomma Apr 2020
Find the place where you want her to live. Don't take her on tours of facilities or ask her to pick what she wants. She cannot make decisions. There are lists of things to consider on various sites; there probably is one here and maybe someone will post it for you. You will need to go on tours yourself to see the various options. I would recommend assisted living with option to move to memory care but the facility will do an assessment of her, in your home so she does not freak out, and help you decide.
Then she moves. You will need to provide furniture; some facilities like the memory care where my FIL is, provides, bed, nightstand and a basic lamp. If she has furniture you want her to take, then arrange for a mover to take it to the facility while you take her to lunch. Then when the room is set up, bring her there, spend time with her when she gets there and then, maybe at dinner, leave her. You will not get her to agree; you will not get her to vote or to understand that you have done your share.

I would not really inform siblings until you have picked the place and are ready to implement plan. Assuming you have POA duties as well, they don't get to vote. They could of course vote to take her in themselves; otherwise, sorry, they don't get to pick. She is going to have to move, somewhere. They never want to move but they will move and do fine.

sjplegacy Apr 2020
Ditto the previous 2 comments. Five years of caring for her is commendable but you have your own life. Tour some MC facilities in your area and if you think she's up to it take your mom along. Her impression of a home, I'm sure, is a nursing home. MC facilities are a far cry from nursing homes. You must make the decision (I assume you have durable healthcare POA for her). It will only get worse for you. You may even feel guilty for placing her in a care facility, but I think the feeling of relief will be greater. Eventually you won't be able to care for her, why forestall it?

PS_ if GBpacker means a Packer fan, I, too, am a transplanted Packer backer.

cwillie Apr 2020
I agree with Daughterof1930, what do you hope to accomplish by talking about it? If you are hoping for some kind of selfless admission from her that of course she values your needs above her own it ain't never gonna happen. Even if she was that kind of woman once upon a time dementia has eroded that part of her personality and she is now only capable of seeing the world through her own needs and wants - just as with a small child it is up to you to make the tough decisions, even if they aren't the most popular ones.

Daughterof1930 Apr 2020
Please don’t talk to your mom about going to a home. With dementia it’s too much for her to process and only upsets her over and over. When you decide you can’t do this any longer, and it sounds like you’re there, get any interested siblings to look at facilities with you (they may or may not be virtual tours if done right now) or go it alone as you have been if they aren’t interested. There are others here who can tell you in detail how they’ve moved loved ones with minimal upset. Even if there is upset, she will settle eventually and you’ll still be a caregiver, one that is rested and oversees her care, making sure she’s as well as can be in her new setting. I wish you well

Kimber166 Apr 2020
Mom needs to go to a home - you are burned out and she needs more care than you can provide. You won't be abandoning her - you will visit. But you should take your life back and not feel guilty.

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