Might be getting in-home care!

CatsWithHandsAreTrouble

Yesterday my older sister was talking to my younger sister and I about getting in contact with someone to see about getting in-home care for mom. I'm super excited that it might become a possible reality at some point, trying to not get my hopes up in case it doesn't become a reality for a while. 

At the start of this journey, dad was super adamant about no in-home care. He didn't want any strangers in the house. It was really frustrating to us kids because we thought that it would greatly benefit mom and us as caregivers to have more hands involved. Dad still thinks everything is fine and he can take care of her himself. He doesn't know how to handle her and it's starting to wear him thin. Still won't accept help.

We need more help. I've no idea how to talk to dad about his illusion of "everything is fine if we have each other." That might work if we were a highly functional family but we're not. My younger sister hates our parents, my older sister is afraid of our dad, and I'm most often the peace keeper between everyone.

Dad's just really "my way or the highway," and I really don't want to take the highway but I cannot keep going his way. His way is a quick trip to burnt-out land and I don't want any of us to go there because of his stubbornness. I'm afraid I'm already there, that he's already there. I really hope we can get some additional help. Sooner than later.

SusanB-dil

That would be great! 

Hope your dad will see it as a plus.  Hope it works out for all of you.

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CatsWithHandsAreTrouble

Thanks Susan, I hope we can get it worked out.

Victoria:

Many thanks! You're a beacon in this crazy time.

I'm not a daughter but I will accept that title as far as my parents are concerned. My dad was at first okay with getting a POA but for some reason balked when I tried to talk to him about getting the appointment set up. He said he just wants a Will, which is practically useless until he kicks the bucket. He knows he needs someone to watch mom on Saturdays while us kids are working. I just don't know how to get him to see we need help on the other days too.

And thank you for the reminder about the guardianship! I got information from the free attorney at the CELA about someone who could get a guardianship for mom. I need to find that info again and pass it along to my OS (older sister). She's usually the one who does all the paperwork, she's very good at it and can keep track of things. I'm just not sure how we can get it done, dad gets upset when we mention that too! I do not think he'd be able to be her guardian, he's shown more than once, imho, that he's incapable. Not sure who else would be good. I'm doing my best to advocate for mom but I can't take care of myself so I doubt I should be guardian to mom; YS (younger sister) is very similar to me so she's not good either. Ah. Sorry to just dump this on you.

I just feel so much pressure that my dad's unfairly placed on me, trying to help mom while jumping through his hoops. The dude played Rammstein the other day while mom was Sundowning! Like honestly. Thankfully he listened to me and switched back to the polka music and not that metal.

I really do want to throw in the towel since it's been an uphill battle with dad from day one. No joke! But I don't think I can when it'll effect all my other siblings,—not just OS and YS. OS I know would try to do everything herself and dad will fight her all the way. While dad was in the hospital, it was somewhat easier caring for mom since we weren't getting undermined by him constantly, but it was hard with just the three of us.

I guess for now, we'll just get a plan in place so that when the shoe drops, OR HOPEFULLY dad gives in, we can start executing it and mom can get appropriate care.

Debwildcat

Hi, everyone, 

I have been patching together in-home care for my 91 year-old Alz mom. She needs more, but we can't afford it. Does anyone have experience applying for Medicaid to help pay for in-home care? When I researched this several years ago, it didn't seem to be an option, but now I'm reading some information that might be possible.

Please advise!

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harshedbuzz

Deb-

What Victoria said. You'll get more attention if you start your own thread rather than add to an older existing one. 

Medicaid programs and the actual availability of services even when they exist varies by state.

The best source for this is going to be a certified elder law attorney in your community. Another source would be your Area Agency for Aging.

HB

CatsWithHandsAreTrouble

An update: apparently someone has already been found and tomorrow is their first day. I was thinking it would be at least a month until we got things worked out. We haven't even discussed how the person is being paid.

I'm excited but also nervous since I just found out like two hours ago. I've no idea how mom's going to handle a new person in the house and if it goes poorly.... Well, I've got some fiblets and a rough idea on how to handle it; I've seen other comments on the forum about the first day with an aide.

My older sister said she'd be here in the morning while the person first comes. I'm glad that she'll be here since she's the one who knows what's going on (?!) and mom seems to do better when there's more than one person in the house. She's from a large family and our household consists of four people. Mom may not be able to place names or faces at times, but she can tell when someone is missing from the dinner table. 

Anyone want to share how to handle a first day with in-home care? Do I show the person what I do or do I watch what they do and offer suggestions, or vice versa? Are we partners in crime? I haven't had a chance to figure out how the dynamics work yet.

LicketyGlitz

Oh man, Cats, your dad sounds a lot like my dad, adamantly insisted he could handle Mom on his own, refused to get support other than my sister and I. My sister finally talked him into attending a local support group once a month and he was absolutely floored that he had been missing out on that kind of help for so long, he never missed a meeting until he died 6 months later of pancreatic cancer. Mom's dementia didn't give him cancer, but taking care of her meant he was not as proactive about his own health and certainly contributed to not catching it sooner.

I don't know if that story will help your dad out, but if so feel free to share!

We were def partners in crime with our MotherMinder! I lived with my mom, so the first few weeks I made sure I was out of sight, but around for any questions she would have, and of course gave her the run down on what worked for us when dealing with mom, but also gave her space to have her own successes (and failures, it is dementia after all). We learned from each other. She wasn't our first in-home care person. The first one was with us for about 4 months before Mom just wasn't having it anymore (which sucked 'cause she was a really good cook!). The second one came for one day, and neither Mom nor I could stand her. So, we went a couple of years before trying again and got the best gal who helped all of us through to the end.

I hope this is a great solution for your family. Good luck to you all!

CatsWithHandsAreTrouble

Thanks Lickety, I do appreciate your experiences whenever I come across them on the forum. 

I still don't know how my dad feels about someone coming, but for now, most of the days the person will be here are days when I'm here while everyone else is at work/ at their own home. Hopefully he'll accept it since it's already happening. He seems to think that he can take care of her perfectly fine and that we're fine. I'm barely treading water. 

Not to be gross but I've not not had time to clean up my room in half a year and I'm so far behind on my own laundry, only washing things as I need it. Cleaning up the whole house and tending to mom has taken all my time for my stuff. Having more hands on deck, I'm hoping to get my stuff together finally. It's stressing me out as is.

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Joydean

Cat’s, the first time we had a caregiver come in ( for my dh who did not want to have anyone else here) I told him she was here to help me.  I did not leave the house the first week. We all three just sat and basically visited. The lady actually had dh laughing. The second time she was here while she was trying to get him to talk I went in my office to get some much needed paperwork done. But I would walk back to the living room to kitchen then back to my office. I did that so dh knew where I was and he was okay. Finally it was the next week before I actually left the house for a couple of hours. I told dh I was going to grocery store and would be right back. Which I did and brought him ice cream. He was happy about that. My letting your mom and dad get comfortable with the caregiver and you still there will be a big help for them. Hope this helps a little. Best of luck to you.

CatsWithHandsAreTrouble

Thanks Victoria and Joydean.

I just got a message from my older sister (OS) saying that the person who was supposed to be here isn't coming today. Not sure on the reason why yet, would have been nice since we had a rough morning already. Having another person besides me here helps me feel less anxious while tending to mom.

I'm really hoping dad warms up to it. He's utterly clueless at times on what to do with mom and my younger sister (YS) and I often times have to swoop in and undo his "help" and get mom back to baseline.

Early this morning dad unknowingly woke me up while leaving his room to go vape downstairs. I decided to check on mom since he left the door open and a light on. Many times when he leaves like that it upsets mom, thinking that he's angry at her or that he's in danger, so I wanted to reassure her. Found her standing over the trashcan and she warned me not to come closer. "I couldn't stop it! It just came out!" I felt my soul leave my body at those awful words, lol.

Mom soiled herself. My guess is she woke up to do a #2 but it came out quicker than she could get to the toilet. Confused on what to do, she then grabbed the trashcan and peed in it. This is my speculation as we've been having poop issues for months now.

I called YS over to help with the bedding and the carpet and I got to work getting mom out of her soiled clothes and getting her cleaned up. Mom was a good helper giving me the paper towels I let her hold. We got everything cleaned up, gave mom a snack since she had been up a while, and then dad came back into the room about two hours later, wondering what the heck happened.

So not sure if she had the accident before or after he left her there. But if he really did leave her there in her soiled clothing all by herself, I'm pi**ed the f*** off. But since I don't know exactly what happened, I'm giving dad the benefit of the doubt. This is certainly not the first time that he's left her when she needed help, but first time that it was fecal related.

SusanB-dil

uuughhh!!  So frustrating!!!