In-Home Respite Care

jrman

I am new to posting. My DW was diagnosed with ALZ about 5+ years ago. Her Neurologist says that she is toward end of MS ALZ. I am her only caretaker and spend nearly all of every day with her. I need to to get her to accept someone coming to the house so that I can get some respite time but she is adamant that she doesn’t want anyone else but me or my sister to sit with her. Short of just hiring someone and forcing it on her I wonder if anyone has found a way to accomplish my delema

CampCarol

I am in the same situation as you, but my DH will not even let my sister stay with him (although she does not have a flexible work schedule, so most times that’s not even an option). I am also a caregiver to my mother, and I have to visit and spend time with her and take her to Dr appointment since she no longer drives. I finally just contacted an agency and hired somebody for 2 afternoons a week. I am now on my 5th agency and countless aides later. They usually last a few weeks. Some I have let go myself because either (a) they’re fair at best and I hope I can do better, or (b) he balks and doesn’t want them back. Others leave on their own due to long commute times (for whatever reason, most help is coming from an hour away). Regardless, the first day anybody starts, I stay home the entire time to ensure they have some semblance of knowledge re: dementia, elderly caregiving, etc. The agencies will basically send anybody that breathes, so although I ask a lot of questions re: background, etc., vetting these aides is really important to me. I want to see how they interact with DH and more importantly, how he responds to them. The 2nd day, I try to leave for just an hour or two, then the 3rd time they visit, I leave for the afternoon. I explain to him that Mom has a Dr appointment (or I come up with another viable fiblet), and I just go. He sometimes gets angry or sad, and he definitely makes me feel guilty about leaving him behind (which is killing me). But as others have said, I need to put my mask on first. Although it’s not a relaxing respite dealing with my mom’s issues, at least it gives me a little break from him. And now, after 7 months of searching, I think we finally have a winner. Our latest helper lives close by, he looks forward to her visits and she is great with him. Fingers crossed that this one will last!

M1

Welcome to the forum jrman. I was at the point you are when threats of violence and aggression caused us to end up in memory care. It was during the middle of the covid pandemic, and I could not find anyone--much less anyone vaccinated-- to come to our rural area. on top of that, my partner would also have been extremely reluctant to let anyone stay with her. I had thought of using excuses such as the person needed a job, was there to do housework or yard work, etc. - but i don't know that any of it would have worked. Day programs were also not an option. Some here have used excuses until the person got to be familiar-- but that's assuming you can find someone consistent and not get rotating bodies from an agency. I hope you have more luck than i did. More often than not we end up having to take steps despite our loved ones' objections. It's all difficult.

SDianeL

I told my DH that I needed help and I needed someone there so I could go to my doctor appointments. The first time she came I stayed home. The second time I left for 4 hours. After her 3rd visit he would ask if “My lady” was coming that day.

LaneyG

I’ve been in same boat for awhile and in some ways still there. From what I’ve been reading it seems we might just have to go for it and give it a try regardless of what aoir DO says. I’m definitely at that point. My DH is hospitalized now. But my plan is to line up help at home ASAP when discharged. This is if he comes home at all. Camp Carol I know you are right. I so dread this painful process!

M1

Another take on this: it has occurred to me that there's an irony here, in that the ones who are most stubbornly independent and unwilling to accept help are the ones most likely to end up in a facility, because they aren't able to appreciate that acceptance of help would allow their caregivers a break and allow them to function at home longer. So it's a self-fulfilling prophecy in many ways.

midge333

@M1 - great insight! This is exactly what I am dealing with and after coming here, I now understand my plight is a common one.

LaneyG

sadly M1 you are probably right.

mrahope

@M1 , you hit the nail on the head. By the time my DH ended up in MC, he had sequentially refused: a planning process for those newly diagnosed, a day center, and two different aides, all in a period of less than six months. By the time we finally had to place him, he would not even tolerate my DS staying with him for two hours so I could go to choir practice, so I had to give up that group. Once he started with the aggression, yelling and elopement, there really were no other options left other than MC. And yes, he was always very independent and wanted to be "the smartest person in the room".

Iris L.

https://alzconnected.org/discussion/comment/220578#Comment_220578

PWDs cannot "appreciate" anything.

Iris

easy23

https://alzconnected.org/discussion/70406/in-home-respite-care

I just let the companion come in and sit in the living room by himself if my PWD doesn't want to join him. I tell my PWD that the companion is downstairs if he wants to say hello. He always does, but if he didn't - no big deal.

M5M

https://alzconnected.org/discussion/comment/220575#Comment_220575

Laney, if you could arrange for your helper before he comes home, and have her there when he gets home, as if she is an extension of the hospital process? Maybe she would just be “the new normal”?

CampCarol

https://alzconnected.org/discussion/comment/220751#Comment_220751

That’s a great idea, and one I will keep in mind should he be hospitalized again!

ClarkEb

encouraging. Our attempts at expanding care giver assistance, continually run into her persistent desire to go home. We have some one MWF 1:00-3:00. LO usually doesn't get up til 11:00or so. Quite often they have to wait for us to arrive from a trip. Or she is persistent even going as far as going out and sitting in the car. Right now "my" time around here is from when I get up until she gets up. Motion sensors will alert me when she is up. But I would so like to turn the reins over to some one else so I can leave for a few hours. Family is a great help. But they have jobs.
onward!

Ladylawyer46

https://alzconnected.org/discussion/comment/220543#Comment_220543

Your DH comment made me smile. How sweet. We are just starting with a helper and I refer to as the “nice lady” there is no resistance on DH part (at least right now) Keeping my fingers crossed that the positive situation continues

Joe C.

DW was adamant that she didn’t want anyone to come to be with her when I first tried bring in an aide. A one point I needed to go into the hospital for surgery so I told her my doctor required someone come to help me recover and since the aide was coming to help me she was fine with that. The agency and aide was aware that I was using this story to get help with DW and played along. After the aide was here for a few weeks they bonded and she look forward to her coming and the aide was with us for 4+ years until placement. Maybe tried to think up a fiblet on why you need someone to come to help you and she if she will accept the aide being there to assist you.

SteveAndy

https://alzconnected.org/discussion/70406/in-home-respite-care

Hi. I went through a similar situation with my mom, and we finally hired a lady to start coming to the house as a friend .. and each time mom allowed more interaction. She eventually figured it out, but she was at least somewhat comfortable with her helper.
You need respite care…the only way you’ll be able to keep going and maintain some sanity!

Good Luck