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My mom and sister have lived in the same area since we were kids where I left at 18 to do my own thing.


About a year ago, I moved back home, from several states away, so that my mom could move in with me due to her Dementia progressing into the advanced stages. My mom was previously living with my sister, but because of our mom's mental decline and my sister's kids entering high school and having a part-time job, our mom would have to be home alone a lot, which we weren't comfortable with, hence why I moved back. Thankfully, I'm able to work from home, so it works out.


My schedule revolves around my mother. I basically can't leave the house for more than an hour or two. Any periods longer, I have to ask my sister to come over and watch mom. While it's a little annoying that I have to work around my sister's schedule, I've accepted it because my sister has her life and her family's lives to manage.


What has me at a breaking point now is that my sister's not accommodating when my schedule changes. My sister agreed to watch our mom for a week because I'll be in a training class. However, I have to now take that training class in a different week. I proposed two new sets of dates and my sister said she couldn't do either week because she has appointments or because her son will be in a basketball camp.


Am I right to be angry that she's not accommodating my schedule change? Should I tell my sister she needs to change her schedule? Or am I just mad at the fact that I'm not getting my way? I just feel like my sister has no burden when it comes to the care of our mom because everything is around my sister's schedule, while I'm always accommodating my schedule around my mom. I've already lost a girlfriend because she and I weren't able to see each other much (granted, the pandemic didn't help things). I should point out that my sister takes our mom to her medical appointments most of the time, but those appointments work around my sister's schedule; if they don't, I take mom instead.


Putting my mom in a home is not an option, but I feel like I'm at a point that enough is enough. But if she is put in a home I'll feel like I let her down because I didn't suck it up and accept the way my sister is.


I'll look into possibly having a worker come during the day to watch my mom while I'm in class, but I want to know if I have a valid reason for being mad at my sister so that I can talk to her about it.

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Based on what you’ve described, it sounds to me that you BOTH gave taking care of your mother your best shot, and you’re both in the process of learning that neither one of you wants to do caregiving any more.

It’s perfectly OK for you both to admit that neither of you want to take care of your
mom, but it’s time to stop thinking that “Putting my mom in a home is not an option”. Not only is it a safe, LOVING option, but in fact, from the situation you’ve described, it’s the only realistic option you and your sister have.

Your sister has a lot going on with her family, and you have job responsibilities. You each need to balance what you want to do for your mom with what you are ABLE to do for yourselves.

NEITHER OF YOU has a valid reason for being “mad” at the other, but BOTH of you need to agree that your mom’s care has become too much for either of you to do.

”Guilt” doesn’t solve problems, but planning for safe care for your mom will.
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lifeondetour May 2021
That's where I struggle with: have I really gave it my best shot? I feel putting her in a home would be a failure on our part because we couldn't make the sacrifices necessary to keep her comfortable at home with us. Maybe it's a cultural thing (our mom is Korean), we look out for our elders.
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Lifeondetour

As a caregiver we notice (often in hindsight) that our loved ones have entered a new phase or that we have. Usually we are caught off guard. Things stay the same for long enough that we feel we’ve got this wired and then “life happens”.

No, you should not be upset with your sister. You should be thanking her. She has shown you that it’s time to elevate moms care. Perhaps that wasn’t her intention but she has had to make a choice and you will need to do the same.

You need outside help. You may have some outside help already.. If so, it’s time to look for more.

Contact your local Area Agency on Aging and talk to them about respite care. Find out about Home Health. Assuming your mom is homebound then she would probably qualify. It’s provided by Medicare and can give you a level of support. Depending on your moms health, you may come to a time where you are forced to place her. It’s best to learn all about that now rather than later. Work with a case manager to uncover all the available now help there is and what the options are in your moms future. It sounds like you and sis may be in your early 40s. Your mom may live a very long time. It’s a very difficult job and it does not get easier.

Life needs to work for everyone. For you and sis and your nieces and nephews and mom. Not just moms life. Just because we can take care of someone at home, doesn’t mean we should. Explore your options. Good luck and let us know how things are going. We care.
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lifeondetour May 2021
Thanks for your insight. I've had that "I've got this nailed down" feeling a few times and makes me optimistic that I can support her until her passing. However, as you mentioned, I need to think realistically and talk to my sister about it. We'll look at part-time help in the meantime and come up with a plan when things do get worse.
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Caregiving for even mild dementia is hard. Even with her family, your sister made herself available for your mom for what sounds like years. She has the right to prioritize her family’s needs, which is what she’s doing. Just because her scheduled plans aren’t related to a 9-5 job doesn’t make them any less valid, especially as she still seems to be available to do some care for your mom to support you. If she couldn’t change her plans due to a job, would you still be so put out?
Sit down with her, discuss what you both are willing to do. Would your mom want to be a source of tension between you two or want her care to dominate your lives?
If you cannot get a caregiver in, then consider either a week stay at an assisted living facility that provides respite care, or start doing your education about assisted living and memory care.
See the forums on this site,
and here:
https://www.alzconnected.org/discussion.aspx

Your mom’s needs will only increase. You will second guess your decisions, no matter what, and that’s ok.
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I agree with the others that there's no need to be angry at your sister. She took care of your mother full time. We can't know how worn out she was, doing her best to care for her and her family. You both are doing the best you can.

Does your mother have any finances that can hire part-time help to spell you?

Having cared for my mom in her home (my home sat empty in another state while I was caring for Mom), I can tell you your mother's dementia will only get worse. She'll require more and more assistance. Have you discussed with your sister and your mother how you'll handle that need?

Lastly, there's no shame in putting your mother in a nursing home. It can provide round-the-clock care that your mother may require.
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lifeondetour May 2021
We'll look at hiring part-time help. I'm not sure we've really considered what we'll do when our mom deteriorates to the point she needs 24/7 help. I think my sister and I are in denial that it'll get to that point. But we'll have that discussion the next time we see each other.

Thanks for your reply.
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All I know is relatives & siblings love to ease their mind by sacrificing one person to do it all. They rationalize everything out so they don’t feel any guilt or concern over your sacrificed life. Try to make the best of it & be glad if you have someone that even helps at all. I’ve been doing it by myself for 10 yrs.
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First I think you must remember that initially your mom lived with your sister, while you were states away,(did you help her any then?) so she at one point had the full responsibility of your mom. So now it's your turn, and you're wanting things done on your terms just like your sister is wanting them done on hers. You both have your own lives, and there must be understanding on both sides. You both should be compromising, and doing what is in the best interest of your mom.
And I know you say that a facility is not an option, but at this stage, what if that is in the best interest of all involved, including mom? Something to think about for sure. This situation is certainly not worth risking your relationship with your sister over now is it?
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lifeondetour May 2021
Back then, I helped with 100% of the finances, sending money home every month and my mom was self-sufficient.

I say a facility isn't an option because my mom is Korean and she's not fluent in English. Putting her in a home with Dementia and her not being able to communicate adequately with the staff would isolate her so much and that's what we're trying to avoid. Living with me, my mom's able to watch all the Korean TV channels to her delight; she wouldn't have that in a home. Me and my sister is all my mom has here in the U.S. and she doesn't want to go back to Korea as she's been in the U.S. for the last 60 years.

Having said all that, it might reach a point where we don't have an option other than to put her in a home. My work could have me traveling again when things get back to normal and if my sister can't accommodate, then we have to realistically look at that option.
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What funds does mom have?
Use what funds she has to pay for caregivers to come in a few days a week so you can get out or get some things done without having interruptions.
You should also be "charging" mom rent, for caregiving, food, utilities and all of the other household expenses.
Getting "mad" (by the way my Grandma always told me Dogs get Mad, People get angry) does no good. It will do more harm to you physically, emotionally, spiritually than it will upset your sister.
Your sister may realize that when you begin spending mom's money there will be less for an inheritance she may decide that a day or two a week is not such a bad deal.
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lifeondetour May 2021
I take her monthly Social Security check and put it towards her expenses; everything else is out of my pocket. We do have a sizeable emergency fund for her because we'll need that when she passes as she'll be flown back to Korea for the cremation ceremony, etc.

I'll bring up hiring additional help and my sister can decide then if she wants to help or not.

Thanks for your reply.
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It's one incidence that you and your sister can't work out, and you're ready to lose it with your her?

Yeah, I think you're overreacting.

Hire someone if need be, and tell your sister that's the plan. She may end up finding another way, or perhaps she can take a couple of days and a hired person can take the others.

Picking a fight is never useful.
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lifeondetour May 2021
It's not just this one incident; this has happened numerous times before but this is one where I said, "ok, that's it!"

We'll look at getting a day time worker to come over the house and watch her.

Thanks for your reply.
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I wish you best of luck in working things out as best you can. I would be, I am afraid, your sister. I would not attempt in home care. I understand and accept my limitations. We really cannot change the choices of others. You made this choice in care, and you say you still do not find in facility care an option. As that is your well thought out choice, then you will do the best you can understanding there is no good choice here, and there is no "fix it", and you cannot control your sister's choices. We really can't stop "feelings"; if we are angry and resentful we should allow that feeling. But we do need to know what we can "control" and what we cannot.
I hope you will find excellent help for yourself and your Mom.
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A good plan should attempt to meet the needs of ALL of you.

Sounds like you & your sister are intelligent hardworking people, trying to add full-time caregiving into your own already busy lives - whether
business career or part-time working/bringing up children.

Now that Mother's need exceed one or two caregivers, it is time to add more.

Another way to think of it is rather than continue as a *lone wolf* or actually two lone wolves, add to your pack!

Employ a good home care company to be the 'sub' or even better, add regular care you can count on/plan for & then add on to as time goes on. Maybe a Korean speaking aide could be found?

Once Mother's needs exceed the home setting, find the best fit/most acceptable facility option. Approach any Korean community services you may have for volunteer or paid visitors. Some ethnic communities where I live work with aged care homes to ensure their members are able to celebrate cultural days & have access to translator service.

One area in my city has many Greek people, who also have been raised to always care for their own. But as people are living longer, having less children, more woman working, home care is not always possible anymore. The Greek community have aged care homes now (open to all) but have many Greek residents & attract many Greek staff & serve Greek food. It is the next best thing.
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