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I am the parent of a mentally retarded autistic adult with health issues who will live with me and my husband his entire life. He is self sufficient to the extent that I can leave the house for a few hours to do grocery shopping and other necessities but could not be left overnight alone.


My mother has dementia but still lives in her own home about three hours away from me. My sister lives about twenty minutes (or an hour depending on traffic) away from her and does all the routine caregiving duties-pays her bills, cleans her home, takes her out and does her grocery shopping usually on Sundays in addition to her regular job. My mother's house is in terrible condition but she has no money for repairs. Early on I suggested that she sell it and move near me--she would have made a very handsome profit as real estate is much cheaper here and I would have been available to help her every day, but my sister (she has POA) wouldn't hear of it. There's a lot of emotional baggage that I won't go into here.
My problem is that my sister is angry and resents my inability to help out more. I've taken mom to a couple of doctor appointments and have come up to clean her house several times. In order to do that, my husband has to take off from his job to stay with my son and I have to pack a suitcase and at least stay overnight with mom. While I haven't had a vacation in twenty plus years, I've come to do the caregiving while my sister vacations in Europe and Mexico but she acts as if it's the least I could do because SHE needs a break!

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I really don't think that anyone needs to go live with anyone even on a short term basis for I'm afraid that would be too stressful and escalate into more mess.

Trips to Europe and Mexico aren't cheep. Does she personally have that much money? Does your mother have enough money to pay for more care in her home that she has right now?

I must ask, does your sister have her own family and if she does, does she have autistic adult living at home. Does she even understand what that means. Or is she so busy jet setting off to Europe and Mexico to grasp all of that which would explain why you only have so much time and energy?
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And any other $ expenses and add that dollar amount to the "bank" for a caregiver and contribute that way
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If your sister can afford vacations to Europe and Mexico she can afford to pay for home caregiver help several times a month. Sorry no sympathy for her. The only thing i would suggest is have mom come and stay with you for a time or take your son with you to stay there. You have an obligation to your son and husband. If she has a hard time understanding that well, too bad. What you may also try is figuring your time ,gas expense ,groceries
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Hugs to you, Sendme2help! You do get it. :-) Living with someone in the Autism spectrum is, well, a unique experience.
My son has invented new names for many things and places in his life. Hartford is "Saskatchewan", the minivan is a Bluebird bus, the convertible is "the Lincoln Town Car." Pity the person who forgets and calls them their real name in his presence. LOL! EVERY restaurant commercial triggers a barrage of requests--can we get that new hamburger, when are we going, can we go now, why can't we go now (you were just there yesterday), can I get fries with that? Yup, we gotta laugh!
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If sis can afford overseas travel then she may be able to afford respite care? I think you may also need some respite!
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That is funny, when we think about "respite" as 'sometimes, in a strange way' it is almost respite! What an accurate description!
Will sleep well tonight, after the big smile of understanding you have put on my face, and shared so accurately, my life that is sometimes, in a strange way.....!
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Humor helps tremendously! Larkspur, I get that going, changing the scenery can be a sort of respite. Leaving someone home with aspergers is always a challenge when returning. Has the electrical been re-wired and now doesn't work? What has he done, how can I find out without waiting 3 days to discover the often funny things he's done. It is also more of a challenge to take him with.
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Sendme2help, I have taken my son with me to visit Grandma. Mom vacillates between being glad to see him and being agitated because she thinks he's "getting into something." (He's not) So last time Grandma tripped and fell on the vacuum cord even as I was telling her not to move. UGH. Sendme2help, as you said you've "been there done that" you'll understand when I say that sometimes, in a strange way, going up to take care of mom for the day is actually a bit of respite for me, if only to have a change of scenery. I try to have a sense of humor about these things.
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One can always take shelter for their own safety, between a rock and a hard place.
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I absolutely DO understand how much my sister does and have told her how much I appreciate it. Mom is VERY difficult! I did offer to be Mom's full time caregiver because I'm already doing it with my son, but my sister wouldn't allow it. When I did take care of mom while sis went on vacation she complained that I didn't do a good enough job. I feel like I'm between a rock and a hard place. Thanks for letting me vent...*sigh*
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You may be able to offer to your sister that she drop mom off at your house a few days per month. Sorry that your sister is going through that, and that you have your own challenges. Instead of arguing, comparing, troubles sharing the load, take care of yourself. Don't feel guilty.
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Been there, done that.
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Larkspur, You are the one who needs help with an autistic son. In addition to your husband, there should be outside resources such as respite care, giving you a break. Not many people will understand the demands on your life, but a few will.
Allow the POA to have her way in everything, bow out from any caregiving, and let her decide to hire help for narc mom. Then, you are going to support groups re: Autism, right?. Excuse me, but how did you arrive at the overestimation of your abilities? Can you take your son with you to mom's for a visit, give him a task to help grandma, and then both of you get yourselves safely home? Take care..
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Larkspur,
It doesn't sound like your sister gets dementia. She isn't really considering her welfare based on what you have said. People with dementia can't stay in the driver's seat when they are making decisions that places them in danger. With your description, there is no way your sister can leave her alone to work a fulltime job. It's just not safe and it will progress.

Sadly, it seems your sister is in denial. She will likely be met with a crisis before she gets serious.

I would consult with an Elder Care attorney before I sold any property. I don't know your mom's financial situation, but I would explore what she can afford in the way of assisted living or in home care and if her income and assets allow her to get any assistance with that. She is allowed a home, but cash could disqualify her from benefits.

You already have your hand's full. Her expectations of you are unrealistic, IMO. She should be happy you are doing anything. So, it's nice to bend over backwards to appease her, but you are likely fighting a losing battle. She needs a reality check, IMO. You can't please some people and trying to care for a person with pronounced dementia from 3 hours away is daunting.

Why not ask her to sit down to discuss plans for the future and see if there is any way you can come to agreement? She is the POA and needs to step up.
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I'm not judging, but it does sound like your sister does do an Awful lot already helping care for your Mom, and I see that you indeed have an incredibly full plate too! I applaud you for what you do in fact do for your Mom long distance, but please DO appreciate what your sister is doing also. It seems that you two need to come to a better understanding of just exactly your Mom needs are, and try your best to appreciate one another's strengths are in helping in this situation. Yes, MaggiM is right, your sister is carrying a huge load doing what she does for your Mom, and it sounds a bit like you may be carrying some resentment, and I understood how that could come about when you have had to give up so much, and yet you see her taking vacations, where you have not been able to. STILL GOING BY THE INFORMATION YOU HAVE GIVEN. Do you two have a decent relationship? Other sibling's? It sounds as if you need to both get on the same page in order to to what's best for your Mom, and stuff some of your interpersonal feelings, and perhaps get some home health care and other available help options in place to help your Mom stay independent, for as long as possible, however it sounds as though it may not be long before she needs more skilled care, and selling her home may be the next reasonable option. Good luck with your Mom, and try to be kind to each other, a sister relationship is to be cherished!
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A big part of the problem is that my sister's been in therapy for years because my mom's a narcissist with borderline personality disorder. She's afraid of her and that inhibits her ability to make good decisions that will benefit my mother and make her own life easier.
For example, my mother has fallen several times. When I told my sister that she needed to remove the area rugs that were in every room because they're a fall risk, she wouldn't do it because, "Mom wants them there." I had to go up and remove them myself. Sis has been complaining about all the laundry she has to do because mom is wetting the bed. As I attended nursing school, I tried to make some suggestions about products and ways to make the bed so she wouldn't have to change the whole thing. I also suggested that it would be much easier if mom's queen size bed was replaced with a twin because most of the products are designed to fit that size bed. I said I'd order it over the phone and they'd deliver and take away the old mattress. Nope, mom wouldn't like it.
When we met with mom's physician, the doctor and I agreed that it was dangerous for mom to have a gas stove for obvious reasons. Sis said she'd see about getting it capped off by the gas company. She never did and said she would after she took mom to the doctor so the doc could explain in person why it was dangerous. In the meantime, I purchased an induction hot plate (it's cool to the touch) and sent it to my sister's house. I reminded sis to have the doctor tell mom about the stove but she "forgot" and so the gas is still on and the hot plate sits in my sister's house.
Even though my sister has POA, she's allowed mom's single asset, her home, to deteriorate because mom objects to spending money to have things fixed. Mom's finances are dwindling yet sis felt entitled to dip into mom's account to help pay for her car repair, yet she earns a six-figure income.
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What you described is such a tough situation. You have your hands full with your son but your sister also has her hands full with your mom. Have either of you discussed moving mom into assisted living? I don't see how you can commit to helping your sister to the extent that she needs help while you are caring for your son. And even though your sister is well aware of your situation I can understand her frustration at having to care for mom on her own. However, I would think that she'd be a little more understanding than you described.

Putting myself in your sister's place, I wouldn't expect my sibling to help me if she were already caring for an adult in her own home.

Not knowing all the details, why not sell mom's home, get her into assisted living, and hire caregivers to watch over her?
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if you want to mend your relationship with sis, I think I'd suggest letting her know what you CAN do to help her care for mom. "Are you guys taking a vacation any time soon? Let me know as soon as you know so I can try to make arrangements."

A three-hour drive isn't impossible. If you aren't seeing your mom monthly, personally, I think you should be. There be 10 am...light cleaning and visiting for four hours...back on the road by 2 pm and home before dark. Quite doable. And you would surely never regret it.

And perhaps BEFORE your visit you might call sis and ask for a staples shopping list for mom...perhaps bring a few frozen meals for sis to thaw for her. Chili or soup or meatloaf or some fresh egg salad, tuna salad, cold cuts. Ask sis what might be helpful.

And while you were there, you might identify a few small cleanup jobs your husband might help with. Maybe once every other month he could spend time there.

I might make sure I was appreciative for what sis was doing. Might send her a thank you card at least a few times a year with a gift card inside.

I guess I would look inside my heart and make sure I was doing what I could to pay attention to mom and appreciate what sis was doing for her. As you look back after mom is gone, you will never be sorry.
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