Bringing in a caregiver

brooklynborn123

Hello everyone- this is my first post. My DW (age 76) is in stage 4. I am 67 and still working. Although she can get by during the day on her own while I am at work, she is spending increasing amounts of time watching TV and often forgets to eat. She also calls me regularly because she forgets how to operate the remote control. She cannot drive anymore because of the cognitive decline and is mostly adverse to going out in social settings or to a restaurant or anywhere for that matter outside her safe zone (home).

I am being told by friends and most recently a senior services consultant that I should probably consider bringing someone in to spend time with her during the day now, because it is best to do that before something catastrophic happens, and because it will get her used to it. Meantime, I am at a loss how to get her on board with that. I can imagine her looking over at a caregiver and saying “why is this person in our house?” She already has been expressing sadness over losing her independence and this morning told me that she feels as if our once equal relationship is now not equal, as I am increasingly taking over things. On top of all this, she attributes these changes to aging and immediately forgot that the doctor told us that she had moved from MCI to dementia. I actually think it’s better that way…..in any case, sorry for going on and on but I could use some advice about how to message the need for us to bring in help a few days a week. Again, I don’t think it is absolutely necessary right now but I suspect it will be in the not to distant future.

Ed1937

Hi Kappy. Welcome, although I wish you had no need for the site. Maybe you could bring someone in, and introduce her/him as a friend who needs a job for a while because they got laid off. She doesn't need to know the caregiver is there for her, it's all about your needs and you want to help her out until she can get a job. Or you need help with light house cleaning, etc.

It sounds like she has anosognosia. If you're not familiar with that term, please google it. I have a link, but unable to access it now for some reason. I'm sure others will have more to say.

M1

Hi Kappy and welcome, I'll second what Ed said. I could not find someone to come in in our rural area (and during Covid), but the suggestion that it's someone who needs a job or companionship is a frequent one--maybe could appeal to her altruistic instincts, make her feel like she is the one who is helping someone else.

Another consideration would be a day program if you can find one. My partner is such an introvert that this would not have worked (and again was not available in our rural area without a 45-minute drive). But it's worth considering. Your working is important--not just for finances but for your own mental health.

Your wife has some insight about the changing dynamics of your relationship--I think many PWD do, and it is one of the very hard things that happens to us as spouses. I'm sorry about that. It's a big part of the anticipatory loss.

Ed1937

Good. It's very common among people with dementia. It can make it easier for the afflicted, but at times can make it harder for the caregiver.

Howaboutnow

Hello Kappy55,

i started with “so-and-so is coming to help me with some things in the house while I’m at work”. My caregiver does some housework, makes DH a meal, laundry, and activities with DH. I had to spend time with care provider to make sure they knew what i was looking for in a care giver. We had some fails before we found a good fit. What i didn’t want, a babysitter. DH isn’t comfortable with someone just sitting with him (and would have made him suspicious). I needed someone that would come in and be comfortable keeping busy while providing companionship and oversight.

It didn’t take too long and he didn’t question the “helper” anymore.

All the best.

brooklynborn123

Thanks for the suggestions—they make sense. It’s also really helpful to get feedback from people who have been there.

CindyBum

Hey there. My SO is in stage 3, but I can see the progress moving along. She and I have always hated cleaning the house, so she talked with a neighbor woman who does that and also helps cook/clean for another elderly neighbor. Though we don't really need weekly cleanings, I've hired her to clean once a week so my SO gets used to her being in the home and they potentially build a little of a comfort with each other for when I may need to hire to come by to make lunches and check in on my SO later. Fingers crossed that this works.

ImMaggieMae

Welcome to the forum, Kappy. We have a caregiver who comes in 3 days a week for 4 hours each of those days. We went through an agency and this was the minimum number of hours. She has been with us for about a year and a half. My DH is in stage 6 and was stage 5 or 6 when she started. The first day she came to our home, with the representative from the agency, we spent most of the 4 hours sitting around and talking, so she seemed more like a friend visiting. We did tell him she was a caregiver, someone to keep him company while I went to doctors appointments, grocery shopping, etc. He didn’t have any problem with her and even lets her in the door often when she arrives. Her only job is to sit with him or walk with him or serve him an occasional snack if he’s hungry.

SDianeL

Ed1937. My DH is Stage 5 going into Late Stage 5 Dementia. 6 months ago a nurse evaluated him for caregiver needs thru the VA. At that time I knew he couldn't use the phone anymore but I still left him for a few minutes to go to the store. The nurse asked him what he would do if a fire broke out in our apartment. His answer was "I would try to put it out" The nurse looked at me and talked some more and asked him again, what else would you do if there was a fire. He thought a long time and said "nothing" -- that was such a shock to me. Afterward the nurse spoke to me separately and told me that under no circumstances should he be left alone. He wouldn't know to leave the apartment or to call 911. And if he fell he couldn't call for help. From then on I had a caregiver come while I ran errands. I told him that I needed to go to my doctors appointments and since he couldn't use a phone, I needed someone here in case there was an emergency. We also got an alert button to call in case something happens to me. He wasn't happy but I told him I needed it so I wouldn't worry about him and could get all my doctors appointment done. So he agreed. The first time she came he was talking to her when I left and still talking to her when I came back. He actually enjoyed it. Be sure to tell the agency if you use one that you need someone familiar with memory issues and someone calm. Now he calls her "my lady" and she has been a tremendous help. Although she will help with fixing him a meal she doesn't have to because we only eat twice a day and she would help with light housekeeping but we don't need that. So basically she is a sitter and just listens and talks and is here in case there is an emergency. She would take him for walks but he has bad knees and can't walk very far. So worth it if you find the right caregiver. The company the VA recommended was Assisting Hands. They have locations in many cities in the US. Please keep us posted on how it goes.

Joe C.

Kappy, My DW was initially oppose to the idea of a caregiver when I suggested it so I brought in a caregiver at a point where I needed some surgery and told DW that my doctor told me I needed a caregiver during my recovery. She was fine with the caregiver if she was coming to help me. The caregiver was aware of the fiblet I was using and played along. In a short time she became DW’s best friend and the caregiver was with us for 4+ years until placements. As others have suggested finding a story that the caregiver is there to help you may make it more acceptable to your wife. Good luck.

brooklynborn123

Appreciate all the ideas. Will do some thinking and formulate a plan that I can deploy. I must say though, that this disease sucks.

harshedbuzz

@Kappy55

Everything about this disease does, indeed, suck.

Dad was highly resistant to bringing in caregivers and a day program wouldn't have worked because he slept late and took hours to get ready for the day. Often people who use day programs explain them to their LO as a senior club or even as a volunteer opportunity. The latter might appeal.

We introduced them when mom had her knee replaced. We told him either he tolerated the HHAs, which I hired so he couldn't fire them as "they work for me", or he would be going to rehab with her to help her there.

The first couple the agency sent were poor fits-- one was a thief, another clearly had no experience with dementia and a third had so heavy an accent neither parent could understand her. The 4th was the charm-- a pretty younger HHA who kind of resembled my mom as a young woman and who was very good at working with PWD.

HB