How do you handle being a caregiver to a parent when you're already a caregiver to another family member?
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!
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?
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!
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.....!
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..
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.
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.
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?
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.