Finally Visited

NUMber2

I finally visited my LO in MC. It's pretty awful. The food is cold, hard, or non existent if they "think" she refuses to eat it. The staff, especially at night are rude or incompetent. (Daytime isn't much better)

She's mad as hell! She's a tweener. She needs mental and social stimulation found in AL with extra support found in MC. They don't really care about folks in MC. She doesn't want to just sit in front of the tv.

I think she benefits from being back in the sunshine but now has to ask permission to go outside, which they rarely grant.

She benefits from seeing friend(s) on a weekly basis but they just stay inside the dining room/ common room of the MC unit.

We've hired her old caregiver to stop by for 2 hours every Friday to take her out , we're working on sticking to that 2 hours. She enjoys it.

My brother does see her at least once a week. Though sometimes it's only for a few minutes at a time.

No one really takes her out to listen to music or sit in the woods or clean her room or makes sure she has what she needs. Sadly, she needs her daughter.

BUT I DON'T WANT TO BE TOTALLY COMMITTED TO CARING FOR HER ON MY OWN..I CAN'T. When she lived near me, I really CARED for her while she was in AL, but I couldn't provide those friend(s), my brother or familiarity. AND her need for companionship was never quenched and I couldn't cope.

I think she's in the wrong MC facility but am I just fooling myself, do they all stink.

Having her 1000 miles away is best for my emotional well being but I don't know if it's best for her.

mabelgirl

So sorry to read this. The last thing I would want is to think my LO is not getting the care they should. I hope you look around and find a better facility that can give you peace of mind. I am just in the process of getting my mom into AL but expect it won’t be long until MC may be neeeded, hence while I am interested in this thread.
Prayers for peace.

psg712

All MCs do not stink. Does your brother agree with your assessment of the place? If so, could he start vetting other facilities to get some options?

NUMber2

https://alzconnected.org/discussion/comment/214181#Comment_214181

Could he? Sure he could. Would he? He'd rather if I did. Is he happy with her care, no, but he's not concerned enough to do anything about it.

I leave in 5 days and fly 1000 miles away from here. I've requested a copy of her contract so we know what time frame we're dealing with. I asked him last week to pick up the copy, but he didn't.

I've spent every day with my LO, sitting with her, taking her out, arguing with, trying to understand her needs, cleaning her room, hauling stuff back and forth from her house to facility.

My brother and I agree she'd be happier back at home so I put a worksheet together of recommended in-home care facilities which were given to me by a social worker who I reached out to a few weeks ago. I've interviewed overnight care and asked him to look at the worksheet, but he hasn't and probably won't. He's asked me to call all of the care facilities on the list and interview them either Monday and/or Tuesday. (I refuse to be the contact person AGAIN for in-home care. This is too difficult to manage from 1000 miles away. He should be interviewing people with me or doing it himself! He won't. )

I've tried to explain her finances to him so he understands the importance of timing, ending contracts, starting new ones, but he doesn't really care to understand the details, the caveats and the timing.

I've re-toured what was her 2nd choice of facilities, both their AL and MC . I had originally toured it back in April. I asked him to tour it too, but he hasn't responded to my request and he probably won't.

I've reached out to two different friends of hers to see if they would be interested in moving in with my LO at her home.

I've called the director of the facility to setup an appointment to advocate for my LO's care. My husband will join me by phone so I'm not alone.

I'm taking her to a followup doctor's appointment so we understand the results of a cat scan done in May. (He could have done this earlier in June but didn't. )

He's her POA. She wants to move back to WI with me but only because she wants out of this MC facility. She has told me SEVERAL times, she doesn't want to move back to WI because it's too cold. But she has also told me that she needs me.

I didn't get support from my brother when she lived in AL while she tried WI. She complained about the AL situation there, I did too 😞, AND she complained about the weather. She's complaining about this facility, I am too 😞, BUT she's happy with the weather here in SC.

I'M TRIED OF THIS!!!

mabelgirl

I have finally accepted the fact that I can not go by what my mom says. She really doesn’t have the capacity to know exactly what she wants. For instance at a restaurant she went over the menu with my sister and decided she’d like French onion soup. When the waitress came back my mom was very abrasive with her and told her she doesn’t like that soup and would never had ordered it. I wasn’t there but I explained to my sister you need to just order what you know she’ll eat. It’s the same with everything now a days, I just do what I know needs to be done without a lot of input from her. I do my best to give ample opportunities on smaller decisions, what to wear , etc.. I personally think we need to make decisions that are best for everyone, not just the PWD.
It doesn’t sound like your brother will put up a fight to move her to WI into a facility there. This would give you peace of mind and make it easier on you to ensure she’s getting good care. I wonder if seeing her friends is really doing that much for her. I say this because my relatives whom my mother lived with for years, come to visit her. The next day sometime the same day she’ll remark how she has not seen any of them since she moved here a year ago. The same holds true for where she’s living at. Before my mom came here she was living with my brother in VA and would constantly complain (sometimes heartbreaking crying) about living there, that she wanted to move to FL with my sister. We made several plans to move her down here but then she’d change her mind (although we do suspect my brother was manipulating her). We finally moved her due to safety concerns and now she hates FL. I’ve convinced myself that it’s not what geographic state she lives but her mental state she doesn’t like. She’ll say things like in VA she never lost anything. Anyways I think it again just shows we do what needs to be done not necessarily what the PWD says.

Anonymousjpl123

@NUMber2 this is such an exhausting situation you are in! You have done all the legwork. You have created options for your brother (and your mom). You have literally gone above and beyond. So now I think you can rest, unless you want to move closer to where they are. I think you may have to let go of your mom being happy. It’s sad, but we cannot make this better for our LO’s.

I know this may sound harsh, but I struggle with this every. Single. Day. With my mom. I’m doing the absolute best I can but the minute she even hints she wants to come home with me I’m racked with guilt. I wish I could offer that option but for so many reasons I can’t. You are absolutely in the same position.

So what we have to do - close by or from a distance - is fiercely advocate for their care, and do our best to create the best possible options. You are doing that. You can’t control your brother. Our society is not set up to offer great options for caregiving at either the beginning or the end of life. That said, please know you’ve done the work. Maybe for the next few days you can just try to be with your mom. I know it’s hard when she’s always complaining. But that’s the part that we have to do anyway. Thanks for posting your experience. Your posts have really helped me.

M1

Number2, you may end up back where you started. I don’t think your brother is ever going to be able to tend to your mother’s needs like you do. Can you find an acceptable MC facility in Wisconsin and take her back there before it gets cold? It still seems like that’s the most workable solution. The more she progresses, the less it’s going to matter where she is, and it doesn’t seem feasible for you to supervise care in SC unless you move there. There are trade offs in all of this. I agree with anonymous that unfortunately what your mother “wants” is not so relevant, sadly. She is not capable of driving this bus. Wish your brother would cede POA to you, in an ideal world that would be better.

Quilting brings calm

Please do not go by what she says. My mom and my step-dad were( and now just her) were never going to admit to being happy or content in their AL. Their PCP made a point of telling me that they were never going to be happy and that all I content do was keep them safe. At one point he told me it was ok to step back some since they were safe in the AL.

Please do not take her back home. You will just be on the round Robin of ‘ I want to be with you, I want to be in SC, I want to be in my home’ and round and round she goes. Wherever she is is not where she wants to be. Revisit your old posts here( you can find links to the discussions you started in your profile). That should help you remember why you knew you couldn’t keep her up there or in her own home in SC.

Your brother isn’t going to care for her like you are. Especially if you are willing to do it for him( the interviews, etc). That’s sad… but he is who your mom picked to do it and he is the one in control then. You can’t care for her 1000 miles away from the person with the legal control. He’s either got to do it or face the legal consequences of not doing it. Since he is legally obligated to act on her best interests as long as he is the POA. He can revoke it, but that probably means you’d have to apply for guardianship to be able to legally deal with everything.

CaliforniaGirl-1

Find a MC you like. They don't all stink. We are very thankful for the MC my LO is in. She is getting good care. She is treated like an individual member of a community with her own personality and preferences. They know her well enough that when something changes they can pick up on it and let me know. When she was hospitalized there was a parade of people visiting in the rehab. And they do what's best for her even when it is more work for them.

That's not to say it's perfect by a long shot or there aren't things I would like changed or improved. But I know my LO is safe and getting good care. When she was capable of it, she made some friends. Don't go completely by what your LO says. Don't completely disregard it either.

When my LO says she hates where she is, I ask why. And usually we decide it is actually a good choice.

If you don't feel like I have described make a change. It is all easier when you are local and can get to know the caregivers and staff. Is that an option?