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Tuckdot1 Asked August 2021

My mother lives with us. Sister will only have mom stay with her if she has 24 hr care while we vacation. Too expensive. What do we do?

Mom refuses respite. Not sure what to do. Mom's finances are dwindling. Sister will only agree to take her if she has 24 hour care. Sister comes once every other week for a couple hours. I do everything else, finances, shopping, and general care. We do have 5 hours a day help. I honestly can't take this much longer.

BurntCaregiver Aug 2021
If you're the one taking care of mom and making her decisions, put her in respite care while you go on vacation if your sister doesn't think she can look after her.
Let your mother refuse all she wants. It's not her decision to make. She'll get over it.
If you truly don't want her living with you anymore, find an appropriate care facility to put her in.
This happens all the time. Families feel they must obey the wishes of a stubborn senior with dementia. You don't have to. What you are actually responsible for be it legally or morally is to make sure your elderly family member is living in a safe environment and receiving the proper care they need. This does not have to be done by you personally or in your home.
disgustedtoo Sep 2021
110% correct!!!!!
Grandma1954 Aug 2021
You mention you would love to have her in Assisted Living. With dementia she would be better in Memory Care not AL.
Personal opinion here and I know others may disagree bit with the diagnosis of dementia mom has little to say about going to Respite or not. If you had a 5 year old and were planning a getaway with your husband and your child said they did not want a babysitter or a nanny would you let them make that decision. If your 5 year old did not want to go to school would you let them make that decision?
Your mom may say she does not want to go for respite, she may be angry, frightened, confused and all the other emotions but she will get over it.
I would chose a place where you would consider placing mom in Memory Care when you get to the point of placing her. That way she will know the staff, the place and it will not be as confusing later.
You may even find that she has adjusted better than she and you thought she would.
disgustedtoo Sep 2021
Before anyone jumps all over Grandma1954 for using the child comparison, we do NOT call them children, nor do we treat them like children. The comparison ends with neither the child nor the dementia patient being able to make good rational safe decisions all the time. It does depend on the age/maturity of the child AND the progression of the dementia, but the issue IS similar. Sometimes we have to make those decisions. We can't always make dementia patients happy. That's all.

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Isthisrealyreal Aug 2021
Yeah, mom doesn't have to agree for you to put her in respite.

Find an AL that will do one month and go have a great vacation and some time at home without the responsibility of taking care of your mom.

Ask yourself why you are allowing a demented mind to run the show?

You and your spouse matter as much as your mom. Get her assessed while she is in respite at a lovely AL and get her placed before you become a statistic.

Tell her she is getting a vacation and leave yours out of the conversation.

notgoodenough Aug 2021
This is in no means a criticism of you; please do not take it as such.

Do you know the reason WHY your sister is refusing to take your mom without 24/7 care? Is she just being difficult, or are there legitimate reasons? Does your sister work at a job that doesn't really afford her any time off? Is she babysitting grandchildren? Is her health - or the health of say, a spouse - not good enough to be able to additionally take care of your mom?

Or perhaps she is seeing something that you, because of your close proximity to your daily care of mom, does not?

My sister dutifully visited mom every other week to see her and give me a hand with everything. Because she wasn't here every day, she really, really noticed my mom's worsening decline in a way that I just didn't, because it wasn't as abrupt from my perspective.

Has your sister expressed concern that mom's care needs are starting to "outgrow" the 5 hour daily help that you get?

I firmly agree with the others who say place your mom in a respite facility and go on your vacation. When you get back, you might end up seeing mom's condition from a different perspective and start to consider some other options for her care.

Good luck!
lynina2 Aug 2021
I agree. In fact, if finances allow, having mom stay in respite for a week after the vacation is over is also important. In addition to seeing her mom from a new perspective, the poster needs to view her life at home from a different perspective. It may motivate her to make changes for her mom and for herself and her family.
lkdrymom Aug 2021
This is not on your sister. This is on your mom. She should do whatever in her power to make your life easier. As someone else posted, you wouldn’t put up with this from a child so why are you putting up with this from an adult

Taarna Aug 2021
It appears your mom's care has reached a point that you can not keep up or feel yourself burning out. At this point you really only have 2 options:

1 - Get a larger group of people to support mom's care. You need enough help so that not only mom's needs are met, but so are the needs of every other person in the household. That means 7-9 hours of good sleep for each person, 3 healthy meals at a reasonable pace, enough "time off" to meet health needs, daily "time off" to relax and "recharge personal batteries" daily and weekly doing enjoyable things with enjoyable people. If mom uses all her finances, consider what options she has on Medicaid.

2 - If everybody in the household is stressed, it might be time for mom to be cared for by professionals. The least expensive is an adult day program in a nursing home or personal care home. Next options is home health care. This one works only if you have reliable staff so you can get out of the home while they are there. Lastly, is placement into a residential facility. This one can be paid for with private funds and/or Medicaid. The last one I recommend if everybody in the household is burnout with caring for your parent.

You could try to set up a respite "vacation" where mom is either cared for 24/7 in your home or in a residential facility. I understand that mom doesn't want to go to a nursing home, but the health and sanity of others is just as important as her happiness.

JoAnn29 Aug 2021
Have you looked at respite costs to compare with 24/7 care? And if I was going to do 24/7 care, I would leave Mom where she is.

Do you have POA? If so, its no longer what Mom wants, its what she needs. If thats 24/7 care and your burned out, then she gets placed.

pipruby Aug 2021
I believe that Medicare covers two weeks of respite placement so care givers can catch a break. You might also want to have her assessed for appropriate level of care. AL requires relative independence...get in touch with your mom's doctor and with your local Aging services for help. And yes, respite in a placement she could remain in would be good ( and a miracle)

There is no shame in being burned out. It was the hardest (unpaid) job I ever did.
my2cents Aug 2021
No Medicare doesn't pay for respite. Respite is for folks who have money. And there may be some very low income type programs that help in some cities. Not Medicare.
Momheal1 Aug 2021
How much care does your mom require?

Are you looking for your sister to take her to her house or your sister will come to your house?

Im not sure of your moms needs but if she is somewhat active maybe your sister would consider it more if mom was in a day program during the day? Maybe your area has some cheaper day programs she may qualify for free or even a very low cost and then you could still have her personal aide and convince your sister to take on the rest?

Maybe try your local Council on Aging they may be able to suggest a day program. When I first took mom home after her stroke and we started outpatient rehab there was a local program that offered centers mom could go to for the day if she wanted to - they also provided up to 10 hours a week aide (that I used to help for my 2 person travel to rehab)etc.

By no mean am I saying your sister shouldn’t just figure it out and do it - but as your saying “she won’t” so therefore how can we can you the much deserved vacation.

Depending on moms needs does she qualify for any respite care? That your sister could still be part of and oversee.

This all depends on your moms level of needs and how much your sister is willing to budge. Don’t give up - you deserve a vacation.

TouchMatters Aug 2021
Is this your sister or your mother's sister?
If your sister and she won't help (more and as needed), then your mom may need to exhaust her savings and get on Medi-Cal. It certainly is not 'fair' that you carry the weight.

Question:

1) Do you want your sister there since she basically doesn't want to take ANY responsibility for your mom('s care).

2) What is she willing to do if she does stay there with 24/7 care provider also present? Is this a vacation for her, too?

3) Perhaps ask your sister to pay for the 24/7 care since this is her request / conditions to 'help' out ?
- If she won't ask her why not and what is she willing to do?

4) Who has the POA ? This is important - both for finances and healthcare.

* Your vacation is likely more than a few days. Get people lined up ASAP for future needs. Always plan ahead as much as possible.

If this was MY sister, I likely wouldn't have much, if anything, to do with her.
Pure selfishness and mean, cold. Putting all this on YOU. REALLY ? 

_________I wrote this to someone else here . . . worth repeating (I hope)

If anyone gets volunteers or official caregivers, be sure to look at documentation: 

* Covid tested (weekly) (ask how often)
* Vaccines given
* Do they wear a mask as needed (6' distancing, etc)
* References (Check)
* Experience (ask questions... how would you handle this?
- If not hired by an agency, these things are the responsibility of the hiring person. I'd double check anyway.

Gena / Touch Matters
Flowerhouse1952 Aug 2021
I wouldn't be too hard on the sister. She can probably see the problem and the answer to the problem more clearly because she's not there all the time. Sometimes, caregivers tend to try to please their parents at every crossing by letting them have their way. The mother should be placed. That way it can be an enjoyable experience to go see mom instead of feeling pent up and angry at mom and sister.
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