Question on getting help

TL602

Hi all, It's been a while since I posted, but I have a dilemma I would love to have some input on.  My mom’s schedule has changed to where she is staying in bed until about 12pm even though I start waking her at 10:30 am.  By the time she gets dressed, goes potty, etc. she does not come out from her room until 1, she won’t eat right away so then it’s about two, watches tv then goes for a nap around 4 - 5pm.  I start waking her up from her nap about 6:15pm, she doesn’t wake up/ get up until after 7, then isn’t eating until almost 8.  I’m working from home because of the pandemic, 7 ½ hrs during the day, but even though I’m home, I can’t spend my work hrs in her room making her get up. It's not fair to my employer. So now my question.  I know I need someone to come in to help with her but don’t know what would be the best time.  Do I get someone to come in and help get her up and dressed earlier in the morning? If yes, what do they do while mom is in the bathroom for 20 minutes and then maybe having her coffee and reading the paper?  Or do I get someone in the afternoon for when she is awake, but then they are just sitting with her while she watches TV.  I would request they go on a walk or do some type of activity, but what about all the down time? 

The service I’m looking into requires 3hrs minimum and I just have a problem thinking I’m spending her money for someone to do nothing a good part of the time.  I’d like to know what others have experienced and how they dealt.  I have a lot of anxiety when it comes to trying to do my job, and at the same time try to get her up.  She used to get up, get her coffee, go out and get the paper and be okay on her own, now she just gets up goes to the couch and stares out the window or picks lint off her blanket. She’s declining more and it’s so sad.      

I hope this makes sense and sorry it's long.  Thank you.

terei

This excessive sleeping is part of the progression of the disease IME.    I would have her assessed for hospice + frankly, I would let her sleep whenever she wanted to unless she was not sleeping at night because of it.

I would quit making her get up if she resists, frankly. I would keep her clean + comfortable + let her sleep.  When we attempted to keep getting my mom up, she fell asleep wherever she was...falling off chairs, while eating etc.   Finally, we just let her set her own schedule.

TL602

Thank you for the reply Terei.  I should clarify that my mom is in the moderate stage of dementia.  It was her neurologist's recommendation that I get her up and not let her sleep so much. He said it was sundowners, but she is sleeping at night.  I think having someone come in would motivate her to get out of bed.  She's not ready for hospice but does need help.

Rescue mom

I have been wrestling with this and my DH with Alzheimer’s. Like yours, he sleeps most of the day—which I don’t worry about, as per Terei comments. I say let them sleep, as long as they’re sleeping at night. But my DH sleeps and does virtually nothing without being urged. When he’s urged, he fights it. So, I let him sleep. Otherwise, I’d be nonfunctional.

 So, what does a caregiver do? The problem for me is that if something breaks, or goes bad, he does not react. He absolutely does not understand that water pouring down a wall, or coffee spilled all over himself, or..(long list) needs anything done. But that’s happened maybe 3-4 times in 3 years.

So what does a paid caregiver do? I’d say 99 percent of the time, nothing. He does nothing, it’s only IF something breaks or happens. Some caregivers have quit, saying they are not needed. I’m still not ok with leaving him. But even caregivers do not like just sitting, and getting him out to walk or something he does not normally do, is a fight.

Short version is, I have no answers, but watching for others’ input.

M1

I think at some point you have to accept that as with a child, you are paying for sitter services and safety monitoring. That is what we as caregivers are doing a good bit of the time....we just do it for no pay.

manuzito

I hired a caregiver for 4 hours a day.  She had a list of her duties: cleaning the area where my husband spent his day,  cleaning his bathroom, change his sheets and do his laundry, help him with his grooming when he was awake.  He was awake only for meals and the rest of the time he was sleeping on his recliner in front of the tv.  While he was sleeping the caregiver would prepare his meals and if she had time left she would bake bread and cookies (not part of her job but she liked to keep herself busy).  She would also read to him even though he was sleeping. Sounds too good to be true.  I placed a sensor on my husband’s bed and chair so that the caregiver could be alerted when he was awake.  My husband was legally blind but got used to the caregiver’s voice  and I think that he felt secure when she was around.  My husband passed away 3 months ago but I know that we gave him the best care possible

Finding the right caregiver is very important even if it is for a few hours a day.  It helps to outline the duties during the interview process in that way there won’t be any surprises after they take the job.

I hope you find the right help for you and your mom.  

Marp

I was going to offer some of the same suggestions you did - particularly the idea of giving the caregiver some light tasks to do when your LO is napping or not needing immediate assistance.  Some caregivers just love to be busy and feel awful if they're just sitting while you pay them.  

When we had a caregiver for my mom, my mom's house was cleaner than Martha Stewart's house I swear.  Everytime my mom rested (which she did a LOT the last few months), the caregiver mopped the floor, scrubbed counters, etc....EVERYDAY.  She just had to be busy.