Beginning care by others

T. Slothrop

My DW’s progress down the slope has accelerated to the point where I need help. She does not acknowledge her memory loss and confusion as anything inappropriate or troubling; rather, she has developed an uncharacteristic suspicion of people in general and of me and her other close family, and is increasingly distancing from friends. I want to start to create a few hours daily when I can work without worrying about her. I’m not sure how to introduce her to such a thing, whether it’s daycare, or a companion in our home; I fear her suspicion will increase and defeat the goals. 

Any advice? Thanks. 

M1

I worry about this too TS.  One thing I've seen others suggest is to say that this is someone you know who needs a job, needs something to do, etc; also for you to be there during the first few encounters, so that you don't leave your LO alone with this person until there is some familiarity.  I don't know if that will work with someone who is paranoid and/or delusional though.  Have you talked to her docs/thought about trying medication for these symptoms?  Just wondering if it would help her through the transition.  Good luck, please do let us know how it goes.  I'm facing the same dilemmas--although my partner is not delusional/paranoid yet, I know she won't willingly accept someone else in the house.

Kenzie56

I was at your point last month and reached out to the company that owns the MC facility where my DH will eventually be placed. They company told me they had a home health care program for people like me needing help, but waiting to place a LO in their MC facility. A nurse came to the house and evaluated my DH and almost immediately set me up with an aide that comes twice a week (4 hours each day). I also got an exercise physiologist to come 3 times per week (for an hour each day) for DH. I told DH that this is a free service thru Medicare for people 70+ that works on the whole body (body and mind). Of course this is a fiblet, but he accepted the "free offer". I made bingo worksheets with pictures of  family members, items of clothing, items of food (DH has difficulty communicating) and also bought some Alzheimer's mind exercise puzzles. The aide starts with the mental exercises; then, she takes him on a walk and when they return, they watch a movie. I stayed the first couple days (doing laundry and dishes, but watching the aide) and slowly increased my time away where DH is busy and doesn't really notice me leaving. This all sounds wonderful - but it hasn't been all rosy in this 6 week period.  The first aide lasted one day then took a job with a company that pays more, the second aide wanted to only text and talk on the phone and ignore my DH, so after that day - I requested a new aide. The third aide was great, but last Tuesday she said she wasn't getting enough hours and has to drive too far to my house (with gas prices going up), so she is taking another job closer to home. Here we go again. 

Another observation from all of this is that DH gets me confused and thinks I am one of the aides. So the constant change of people coming in and out has confused him more - but I am hopeful this will settle down once I get an aide that stays longer than a month. (The exercise guy is wonderful and has remained constant and DH loves him). I will give one more aide a try and see. I gave the company a list of expectations on my part and want them to vet the applicants better before placing another aide in our home. We'll see. So, I was super worried about DH allowing someone in the house...but it turned out the problem is with getting good home care aides.  The companies pay them peanuts but charge us a fortune - and at this point burnout in the health care business is a major concern and companies are taking just about anyone. I want to stay with this company because their MC facility is excellent and the transition will be smoother on my end...I just have to figure out what is best for DH in the meantime during this revolving door period. I hope this was helpful. I guess my problem is - I worry about things that end up not being a worry and then things that are not on my radar end up a catastrophe. Recommendation: Give the aide suggested activities so he/she doesn't just sit with your DW - especially if she is anxious and needs something to do. Also, ask the company how much training the aide has had in memory care. Good luck...I do hope you get a good aide. 

Phoenix1966

Like Kenzie56 experienced, I noticed with the influx of OT, PT, nurse and social workers that came(for free via Medicare) to help, my 95-year-old grandmother’s confusion increased. I was alternately viewed as my mother(we do look similar and she and I were the only caregivers around my grandmother at that time) or one of the aides who came to help. It usually required me to walk out of the room and re-enter for her to then recognize me.

Yes, it was wonderful to have some time while these kind folks were there, but it did bring another set of problems, too. 

Lynne D

I have to echo what M1 said. Find someone you trust or engage an agency, and have the person over to help *you* with tasks. Make them a familiar person in your household. Then after a visit or two, slip out to run a boring errand or something that would annoy your LO. I tell my HWD I am going to physical therapy, and the caregiver (I don't call her that, she's my "friend" M) is going to be here doing some housework and will fix him lunch.

I disappear with the best hopes that I won't be missed. It is kind of like when you leave your child at daycare for the first time. Often there is a full-blown hissy fit, but when you are out of sight, everything is OK. 

T. Slothrop

Kenzie,

Thanks for your very informative post!  Is your partner waiting for a place to open in MC?  Or committed to an MC place?  Are you able to discuss this with him?

Camoruso

I went the day care route for my wife. She goes 2 days a week for about 6 hours. I just call it the senior center and not day care. I told her she would have activities, meet new friends and get out of the house for awhile while I got things done. To my surprise, she accepted that explanation. She's been attending for 5 months now. She eats meals there that she won't eat at home. She is participating in the activities. The caregivers have remained steady which I feel is a big positive. It's a city run center so the employees get decent pay and benefits. At this point,  taking her to the center gives me more flexibility in how I use my time.

Kenzie56

Hi T.S., I paid $1,000 to place him on the waitlist and I have first refusal until I am ready. That way I am always at the top of the list. I have not discussed this with him...it will not be easy and I am dreading the day. He has anosognosia and is unaware of his rx and the fact that it is becoming too much for me and needs to be placed. He has had some accidents, but when it becomes a regular problem, then I will know there is no other choice - as I am about to lose it. We stay home and close to the bathroom at this point. His communication/comprehension is getting so bad, simple explanations are a real challenge. I will probably fib and create a story that I have to have surgery and he will be in the facility while I am away...not sure yet. He won't understand that, but we'll see. As you know, just making it day to day is the current focus. DH is up all night and a night-time aide would cost more than MC, so that doesn't help me! He has lost 42 lbs in the last 6 months even though he is eating nourishing meals and snacks. The doctor said this is cachexia...all these labels make my head spin. So when an aide says she is quitting - I just want to curl up in a ball and cry.

abc123

Finding a good sitter for mom has been a nightmare. I think I'm on #7 in a three week period. I have been very clear on my expectations but it hasn't helped. I'm using two different agencies and still can't find a good sitter. Meanwhile my mom is declining quickly.

caberr

I hired a care giver a month ago.  So far it is going well.  She has worked with a close friend and our friend highly recommended her.  The day she came to talk with us 3 of our children were here. I had told DH this woman is a friend of our friend.  He asked what was happening and he didn't need anyone to be here he was ok alone.  So glad the kids were here.  My son told his father "It's for mom, and it was their idea, and this would help mom get out to do somethings".  He said OK.  

He doesn't know I am paying her. He wouldn't be happy, but she comes 2 mornings a week for 4 hours.  

Good luck