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I care for my 97 yr/old mother who has dementia. Mom lives with me in my small house. The hospice bed is set up in my living/dining room and she is now bedridden and needs more care.



My younger sister has visited 3 times over the past year, only because it looked like mom might pass. (Really bad UTI, Covid 2 times, hospital stay, skilled nursing) She has ALWAYS stayed with me when she visits over the past 9 years.



My sister is coming next week, for 3 days, along with my older sister for 2 days. I do have a guest room but one sister will have to sleep on the couch. Caring for Mom now is extremely hard and I was looking forward to a break and some help. Plus, I wanted them both to experience what I deal with on a daily basis and see that I am not exaggerating! Mom is bedridden now and not at all like she was (physically or mentally) on my sister's last visit in November.



My sister just informed me that she is renting a VACATION RENTAL and a CAR because she doesn't want to "create any more stress for me." WTF? The whole point of their visit was to stay here to help out and give me a break! My older sister drives me crazy, so my younger sister said she could stay at the VRBO with her too! My head just exploded! She kept trying to justify renting a place, so I told her to just do whatever floats her boat!



Lately, I've been very angry and frustrated with everything! This is HARD work and I no longer have a life! I'm home 24/7 with the exception of respite care 6-8 hours a week, where I just run around like a crazy person trying to get errands and shopping done! It's not like I'm doing anything FUN! I had hoped to sneak away for one night and day during their visit but I guess that's squashed now.



I also fear my sister won't be here to help with any of the things I deal with and do all day long since she will have a car and knowing her, will want to go do things when mom is sleeping. News Flash: Mom wakes up ALL THE TIME needing something or she tries to climb out of bed!



Am I wrong to be pissed off at her? Or is this just her not being able (or willing) to deal with the situation? I'm trying to see her side, but failing.

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Your sisters are telling you loud and clear they are ViSITORS not actual HELPERS.

Maybe I am wrong..? Maybe they don't wish to add to you burden by being in your space?

Invite them for dinner (don't cook! Ask them to bring takeaway). Have an honest chat about the reality now & as things go on. That more help is needed is fact. Discuss who, when, where this will come from. Ask for their honest intentions regarding help. Either they say they will step up & do so, or be honest & say no. If no, then you discuss how to pay for help. Either in your home with CNAs or transferring Mom to a care facility.

Be clear about what you need.
Be clear about needing honesty. No wishy-washy empty promises.
Be ready to replace them with 'staff'.

Then do what you cam for Mom - with a lighter load & heart ❤️
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BurntAllOut Apr 2023
Thanks Beatty. I've had time to cool down and I think the reality of what is happening (mom in the final stages of life) is it's just too hard for either one of them to witness and they don't know what to do or how to help.

I've already told them I will not be cooking! LOL!

We've had numerous discussions about me getting more help, and I've tried a couple of agencies and private people and had to fire them all because of their lack of experience with a very old person. I've finally found one girl who is amazing, but she can only work on Sundays. I'm still searching and the hospice RN is helping me out with that.

I moved mom out of MC and home with me because she was about to run out of money and then, after they drained her bank account dry, they were going to kick her out! Mom also does not qualify for Medicaid. =(

My younger sister has tons of solutions! She talks to all her friends about this, heeds their advice, and then tells me what they say, never listening to me and what I'm telling her. It's always easy to tell someone what they should do when they aren't experiencing it. I'm probably overly protective of Mom too.

I'll have no problem asking them for help with daily things and do intend to get out of the house for a couple hours each day and taking my dog for a long hike! =)

Thanks for your reply.
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OP, you say “the whole point of their visit was to stay here to help out and give me a break!”. Did they know that it was “the whole point of their visit”, or did you assume it was obvious? Did you give them details of what it would mean “to help out and give me a break”?

Your own life is overwhelmed by your mother’s care, so I can certainly understand that you thought your need for help would be obvious. Perhaps you could take a step or two backwards, and tell them what you were hoping for. Give them some detail of what you are doing, and ask if they are willing to take it on for a few days? I can see why you are upset, but the upset should perhaps be with the whole situation, not with your sisters for getting it wrong. Your mother will die, and you don’t want to lose both your sisters at the same time.

I’d suggest that you put this in a letter to both of them, so that you have a chance to write a good list of what’s involved, ask politely if they will help, and vet the anger out of the letter before you send it. Whatever they say, the letter would be a good start to a family meeting about what happens next. You shouldn’t be ‘BurntAllOut', they should understand how things have gone downhill since the last visit in November, and they should be part of a solution.

Good luck! Best wishes, Margaret
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BurntAllOut Apr 2023
Thanks for your reply Margaret. In answer to your question, it's two fold.

1. Yes, they do know the whole point of vising was to give me a bit of a break. We all three FaceTime every Sunday where I fill them in on the week (the good, the bad, and the ugly) and then they also talk to mom.

2. I'm pretty sure Mom is in the final stages of life. Their visit is to also say their goodbyes. I know this will be extremely hard for them and I guess I'm scared too and don't want to have to be their support system.

I am going to make an appointment for the Hospice Grief Counselor to come while they are here. I have talked to her before about everything and I think she will be a good neutral voice and mediator.

I have written many emails to my sisters over the years... only to never get a reply back. Usually when I'm most frustrated with everything! LOL. I doubt I'd reply to an email like that either! My bad!

I'm sure their visit will all be fine and work out as it's supposed to. I can't control their actions, only mine.
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You could blindside them with a family meeting. Take charge and tell them you can’t do it alone anymore. Then present alternatives, such as inpatient hospice and brochures for care facilities (some near them).

Then sit back and see what happens. Maybe nothing, but it would be a dramatic way to present your case.

You need to do something out of the box, and the surprise factor could provide useful information in their reactions because they won’t have had a chance to come up with a rebuttal beforehand.
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BurntAllOut Apr 2023
Thanks for your reply Fawby,

I do get daily hospice visits now. A facility is not an option since Mom's money is just about gone. She was in Memory Care for 6 months at $6500 a month! I pulled her out before they drained her bank account, just so there would be some money in case she needed hospitalization again, and to pay for respite care. She does not qualify for Medicaid. =(

I believe Mom is now in the final stages of life, and it would kill me to put her somewhere now and not be with her when her time comes. I'm sure this reality is affecting me too and adding to my stress. =(

Your comment about surprising them and them not having time for a rebuttal made me laugh. I do that all the time! I have my answers all planned out when I get another stupid suggestion from my one sister.

Thanks!
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I would approach it like this.

”Hi sis. Mom is going to need a sitter from 6 a to 6 pm. Thanks in advance for coming out to help with this as I have matters to tend to.”

And then the hard part.

”Sis, if you don’t want to do this, I have no one else. Im old too.”
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BurntAllOut Apr 2023
Love it! And I am old(ish)! LOL!
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Yes. I know all to well from a caregiver standpoint what you are going through. However, getting upset with your sisters won't help you or your mom. You do need rest and peace of mind. It's a tough road and middle of the night you might have to get up and sometimes get no sleep all night. That's unfortunately, the downside of being a caregiver. As far as your sisters, all you can do is express to them that you were hoping to get a respite and they watch mom for a some days. That's the least they can do considering they get to go back to their life. But, just express how you feel. That's all you can do and then just let it go. You can't force them to do things they don't want to. Even if they do stay with her and leave it might not make them appreciate what you do or them say we are going to help you more. Let those feelings go as hard as it is because you have enough stress. If you can afford it get a home health aide. Get some help to help you and your mom. Or look for a facility. Someone should be able to help you not take on everything. The one thing you don't want is regret. Don't get so upset you don't take care of her like you know you should and something happens and she's gone. You couldn't live with yourself. Help and support are critical in this situation. Having someone to talk to and just listen at your frustration. It's not against your mom but it's overwhelming and people who haven't gone through it have no idea. Don't give up. Get help!!! Whatever you have to do. Hopefully when you express your feelings one of your sisters will help or help you get some help. Take times when she's sleep to try and meditate or find some clarity within your mind and soul. It's therapeutic. Any hobby you can find any time to do. Whether it's a hour or however long. It's a tough road and long journey especially by yourself but trust me... In some way you will be rewarded. I was. And I wouldn't change anything. All I could be was grateful. You'll look back on this one day and say you made it through and did all you could and be at peace and proud of yourself for doing so. But please find some peace for yourself and help!!! I wish you, your mom, and family the best!!! Keep doing what your doing. DONT GIVE UP!!
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Your anger and frustration are likely more related to your burnout than to your sisters.

Did they commit to providing hands on care when arranging the visit or did they just want to see her?

I would suggest arranging for facility respite care during their visit so you can have a true break. You also need to have a discussion with them about how you can all work to make better arrangements.

Your example of self sacrifice and the misery of burnout is unlikely to inspire them to volunteer to move in and do the same. You would be better off if you could follow their lead in being a daughter who visits rather than an exhausted 160 hour a week caregiving staff.
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Please tell them what you said here.

PLEASE just say "It's fine for you to stay wherever you like, but I need to ask you both please to stay with Mom for a few days and let me get respite.

Just ask.
I would also let them know you are going to have eventually to consider in facility care of your Mom before you die of it.

Why would you not be truthful with them? What in the world do you have to lose by it?

I am so sorry and I so wish you respite at this time.
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You've chosen to attribute all sorts of motivations and actions that they have yet to do, so of course you've gotten yourself all wound up -- you're making it all up and have gone from zero to sixty with all the bad stuff that could happen.

I think it's very good of them to not add the burden of two houseguests on top of dealing with your mother. I wish I never had houseguests at any time -- I just hate it.

When your sisters get there, discuss (don't order) what's going to be going on while they're there. If Mom needs help in the night, then sure, you could ask that they take turns staying at your place to help out and give you an uninterrupted night's sleep. Maybe you'll get to stay at the rental place instead.

Just try to be fair and stop making up what will happened before it happens. Be aware of your own burnout (totally justified) and know where your upset is really coming from, because it isn't from your sisters -- yet.
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I think you are blowing things out of proportion here because you are understandably burnt out. Instead of being "pissed off" at them, look at this as a blessing that they won't both be underfoot in your small house.
I'm sure they will still come spend time with you and your mom and you just need to be prepared to tell them EXACTLY what you need them to do for you while they're here.
Plus you must remember that it was you, not your sisters that opted to take care of your mom. You didn't have to you know? It was your choice.
And yes it's a lot caring for someone who is completely bedridden. I know, as my late husband was completely bedridden for the last 22 months of his life.
Instead of expecting your sisters to come rescue you, you need to now get serious about either placing your mom in the appropriate facility, or hire(with her money)more full-time help so you can get your life back, before you end up dying before your mom does.
Your mom(if in her right mind)would never want you killing yourself all because of her. She's had her life and you still have yours to live, so please, please, please, start taking better care of yourself and do what is not only best for your mom but for you as well.
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Nope, you don’t have the right to be upset. You chose to take her in, they didn’t. A bedbound person should be in a facility. No one’s fault but your own if you want to martyr yourself.
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Well. Every other night while they're visiting, they can stay at home with your mother and you can get a night off sleeping over at the rental. No?
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I think you and your sisters are all trying to do their best but you need to TELL YOUR SISTERS what you need. They think they are just making a visit and they don't want to put you out so they're staying in a VRBO. You NEED someone to understand that you can no longer do the 24/7 caretaking of your mother. Just be very honest and TELL THEM - "I need a break so I'd like to be here with mom", or "I can't keep doing this so we need to discuss what we're going to do about mom's care." They don't want to see that things aren't working and you need them to see that things aren't working. So many of our problems are because we expect someone to read our minds. What we need to do is be specific on what we need. Please have an honest conversation with your sisters before they arrive so that you can get a little break and also start looking at the next step in your mom's care.
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lkdrymom Apr 2023
I was going to say the same thing. They think they are there to “ visit” and OP thinks they are supposed to be coming* to “help”. A long conversation is in order
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Just bc your sisters are staying elsewhere does not mean they're on a mission to piss you off, or that you can't honestly ask them for the help you need and want. Me, I'd be happy to have guests who did not feel entitled to impose on me in a small house, but that's my preference.

Don't expect your sisters to read your mind or be able to comprehend the magnitude of your stress right now. Write out a list of things these gals can help you with regarding mom's care, and a schedule of her needs. Then give a copy to each and let them know how exhausted you are and how them pitching in would be a huge help to you.

This is a very tough time you're going thru and my heart goes out to you. Try not to let exhaustion fear and stress spoil the time you plan to have w your sisters. They don't get it.
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1. hug!!! ❤️🙂
2. you're very kind
3. you're understandably totally burned out
4. you're totally right to be upset. your sisters are extremely selfish. you absolutely deserve a break, and they CAN (but aren't willing, because they're selfish) help out by being IN your house. you're helping ALL the other days; they can pitch in and help for a FEW days, just so you can finally breathe and relax a bit.
5. my brother did the same. he rented a hotel room, to make sure he could escape and not help out.

conclusion?
please be informed that i'm a professional butt-kicker.
i look forward to kicking your sisters' butts.
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bundleofjoy Apr 2023
❤️🙂
true to my word, i’m warming up for some butt-kicking. currently stretching my body. neck rolls, shoulders, hips…
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No, but you need to stand up for yourself, let one of them stay with Mom and you go the VRBO.

Also, why not consider placing your mother so you can regain your life? She has lived a long, long time, might be your turn to do the same.

My mother is 98 and in AL, doing just fine. Your mother might need MC, but it may be time to do what is best for you.

You are not squashed, just take a stand, set your boundaries and stick to them.
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