Expecting too much from in-home care?

AlexandriaAlz

I have a question about how much I should be expecting a home care company and the home care aides to be able to do.

I'm an only-child who lives in another state from my dad who has suspected Alzheimer's, likely mid-stage (working on getting a diagnosis but he's been resistant.) He has been living alone for a LONG time and we finally had to set up home care after a middle of the night wandering incident in which he ended up getting picked up by the police.

It's been a few weeks with 24/7 care in his home (two 12-hour shifts). He has been accepting of it mostly but isn't totally happy. While my dad's cognition, judgement and communication all indicate significant impairment, he is very healthy otherwise and still wants to walk 3-5 miles a day, can do most of his ADLs as long as he's prompted to do them but needs assistance preparing meals.

So far our experience has been that the home care aides are basically babysitters. They wait for him to self-direct his day and ask them for things. We had one aide for a week that called me or his close friend multiple times a day to ask us what she should do with him, feed him, or just to tell us we needed to come over and deal with him (we have provided pages of notes about his interests and food preferences, etc. the the communal care binder). None of them have seemed specifically versed in Alzheimer's or Dementia care and seem to have only worked with people who were bed or wheelchair bound. They don't offer up alternative activities or try to redirect him when he says he wants to go for his third walk of the day and it ends up causing fights when they say no.

What is realistic for a home care aide? Is it normal for them to just be there to watch over someone or are there some that will act more like "cruise directors" and guide his day a little better? Do we need to be providing specific activity calendars to them? Is it reasonable to ask them to take him to museums or other activities outside the home? We are strongly considering a memory care facility to provide some of this structure but for many reasons would like for him to be able to remain at home.  

LaurenB

First off, welcome to this forum!  We're glad to have you here.  We went through the hired caregiver situation recently with my mom.  I've been working with people with dementia for the past 21 years (geriatric speech therapist in nursing homes).  What we want out of a paid care giver and what their knowledge and education on the subject is limited.  The CNA's (certified nursing assistants) were able to make sure that my mom was safe, bathed, and fed.  They don't all have an extensive understanding of what Alzheimer's (or how to differentiate it from other dementias) and how to best interact with person's with dementia.  This is the primary reason that I left my full time job to be with my mom.  Additionally, the aides weren't as physically fit as my mom.  Mom can walks miles each day if you hold her hand for assistance with balance.  She can get home from a walk and immediately decide it's a nice day and want to go back out.  For us, finding someone who is physically fit enough to keep up with her was tough.

Your statement of being a cruise director is spot on.  I have to judge the mood of my audience each day and then convince them that what MUST be addressed is addressed in a manner that make s them feel like they are in control.  Task that would be NICE TO GET TO can take several days to get to.

For us, we keep to a routine and have a long standing list of things that I know that my mom finds enjoyable and we cycle through them.  One thing that we have recently discovered is that AARP offers FREE ONLINE VIRTUAL FITNESS CLASSES.  I go on line and register for the classes that I think that we might find fun.  Mom can't keep up with the class, but sure enjoys trying parts of it.  Sometimes we just stand up and take one step to the right, then one step to the left.  She has no idea that she isn't doing exactly what the class is doing and we don't keep our video on.  We just have a good time for 45 min-1 hour each day.  Consider trying a class that they might not normally go to.  We've tried country line dancing, chair stretching, Nia?, today we're going to try to get to an "Everybody dance" class.  Maybe your caregivers have access to laptop or cell phone and you could sign up for classes.  That could give them something to do rather than tv.  

Another thing that mom still enjoys is helping to bake.  I'll buy the muffin mix that you only need to add eggs, oil, and water to.  She helps with the egg cracking and the stirring.  We then talk about the smells, watch the batter rise, talk about shared memories or invented memories, eat the muffins, clean up.  This can be a 1-2 hour process when we go her speed and it keeps her engaged and having fun.

I also keep my mom on a schedule that can flex.  She gets up, has breakfast, takes her medications.  If the sleeping didn't go well the night before, she might take a short 15 minute nap.  Then on MWF, she gets a shower and I do her hair.  By then it is time for an AARP class.  We then either have a snack or move into lunch where she "helps" me make her lunch.  We eat together since she needs cueing to continue to eat.  We might then run an errand, take a walk, or do a chore together.  It's probably a good time to then sit and have an apple juice or water.  We then place a video call to one of her friends or family members (she doesn't remember them any more, but I carry the conversation and she follows a long.  By then if she is looking tired she might take another brief nap.  I can't let her sleep too long or she won't sleep at night.

It's hard to be a paid caregiver when you don't have a shared history with the person.  We found that they were doing their best, but often didn't have much of a direction and need suggestions as well as permission from us to try something out.  I still find myself asking my stepdad if it's ok if we do something.

-Lauren

dayn2nite2

While it's admirable you're trying to keep him in his home, he is past the time where he should have been placed the moment he left the house in the middle of the night.

He needs a keypad/locked facility to prevent the wandering.  In-home care with you not living in the same state is not doable here.  What was your plan when one of the aides couldn't show due to illness or emergency?

Best scenario is to implement whatever plan you've been making for when he is placed, and I do hope there is some plan.  Have you also secured DPOA and his legal stuff is taken care of, including having access to his financial info for care planning?

The home care workers have no personal investment in him and it's unlikely you're going to have the "cruise director" experience from them.

CatsWithHandsAreTrouble

Welcome to the forum! So sorry you're going through this journey in life, hopefully others have given you some good answers so far.

I suggest looking up anosognosia and fiblets. Those might help you figure out how to get your dad to the doctor's for a diagnosis. Basically he can't really tell that he has impairment and assumes everything is fine. You'll have to learn how to stretch the truth to sound appealing to him in creative ways. 

As for the in home care, we've been through three people so far had have had various results. The first one was good, she had a wide range of experiences and could do some cooking, cleaning around the house and guide mom to her next activity. She required constant in put from me though whenever mom finished the activities sooner than usual. She left for surgery and for one reason or another hasn't been back.

The second one was pretty great. She utilized a lot of different things to keep mom engaged and on her schedule. If one thing didn't work out, she'd try something else or ask me if nothing else seemed to work. She got a different job recently.

The third one was only there for one day and never came back and needed constant input.

It's really a mixed bag on who you'll get sometimes and if you do get a good one, they might not stay as long as you'd like. Good luck.

AlexandriaAlz

These replies are so helpful and kind of what I expected so thank you!

LaurenB, my dad sounds very similar to your mom, activity-wise, so thank you for all the tips! I think some fun classes could be engaging for him. I have been mulling over the idea of taking a leave of absence from my job and seeing how the full-time caretaking might go since he listens to me more than anyone else but we only entered into this full-time situation a few weeks ago.

dayn2nite2, he has a close friend that lives just a few blocks away that has been my care partner for the last few years keeping an eye on him when he was living totally alone so she's the emergency contact if there was a caretaker situation and we both have POA and Medical POA for him as well as control of all his financial accounts. While he never wanted to end up with alzheimer's he was incredibly good about planning for his older age, fortunately. But we are looking into memory care facilities in the area and getting on waiting lists.

It sounds like while we still do have in-home aides I should be more proactive about writing down a schedule, menu, redirection ideas and setting up a calendar with things to do each day.

mommyandme (m&m)

Welcome to this forum, but sorry that you need it.  

My brother and I did long distance caregiving. As mom progressed, we alternated months on going to visit and check up on things.  We also vetted the caregivers who would be coming in. I think taking some time to visit is very important. We also installed cameras which are invaluable.  24/7 long distance care only lasted 6 mos.  When there was a “no show” I’d have to call on family and friends to step in.  It was very difficult. We moved mom to my state earlier than we anticipated, full on Covid time, June 2020, because of caregiver break down.  

I don’t think the service we use now, for my respite, would have someone that would want to walk that much, if they even could.  A cruise director would be helpful but I have to direct most of what I want them to do.  

I think your idea of getting to your dad sounds optimal. Probably should try for a long weekend soon if a leave of absence might take more time to get you there.