home care vs facility

DDNNYC

Trying to decide best place for Mom with ES dementia symptoms.  No dx yet based on scans, but clearly diminished capacity- short term memory issues and loss of exec function.  Sheis otherwise healthy but weak, uses a walker and mostly stays in bed.  What are the pros and cons of keeping her home with live-in help vs putting her in a facility (not sure if she would have to be in memory care just yet, but I assume she will at some point).  

At home, she's more comfortable, feels more in control, but she can't really get out and do much, hard to get to Drs. so has become isolated and depressed.  In a facility, she might be happy to have some social activity, but with walking difficulties and memory issues, would she just end up locked in her room most of the time anyway?  Is assisted living (maybe with a few hours of a personal aide on top) even an option in early stages?  She's likely to get lost and confused, but may be ok with a routine 

As a caregiver, would a facility be much easier for me?  She can be a bit nasty and won't listen to the home aides or ask them for help with most things.  Any advice or experiences appreciated.

BarbaraG

Without reading anyone else's responses, my advice is to keep her home with in-home caregivers or take her to an adult day care.  The assisted living/memory care facilities are short staffed right now and covid is running rampant. It's cheaper to let her stay in bed at home than to pay a facility for a bed.  We just pulled our loved one from a facility that was full of covid and short staffed. She already looks better from getting fresh air, sun, and plenty of fluids.

Good luck!

Barbara

MimiMinder

I have very limited experience, but we chose to pull my mother out of AL 4 months ago due to isolation and complications from a fall and broken wrist. She couldn't function well with cast and daily tasks and she refused staff offers to help. Even with full PPE, I could not come in (which I totally get, but still...)

For months every single meal had been dropped off to her door. She ate in her room, alone, for months. The joy she has had being in a home environment has been huge. That being said, my husband and I are the live in help and it is tiring. Answering the same questions, dealing with incontinence, staying cheery -- it takes its toll! If you are thinking about a rotating staff of caregivers, that might be challenging and expensive and risky (has everyone had their covid shot?). No easy answers here. Just wanted to offer some support and wish you well!!

BarbaraG

Wow Mimi, we pulled my mother in law out of assisted living as well. She was basically being ignored and the facility was full of covid and short staffed. She was isolated in her room.  She can isolate with us for a lot less money and better care.  I agree, it is very tiring.  I'm exhausted and it's only been 10 nights so far.  I wish there was a solution for all of us.

Barbara

Quilting brings calm

Assisted living is an option at the early stage.    As long as she is able to dress herself, toilet, use eating utensils, etc.  The ASL my parents live at provides meals, snacks, housekeeping, does the laundry, manages the medications, etc.  Prior to Covid, there were daily activities, movies, bus trips to restaurants etc.  During Covid, there has been periods of time when meals had to be delivered to the rooms and activities were cancelled to limit groups etc.  Howver, they got their first vaccine shot this week and the dining room is now re-opened. 

The question is what care can you provide and how long can you do it?  The history of the house, interpersonal dynamics, finances also come into play.  I knew from day 1 that my parents could not live at our house nor were they welcome here. They were no longer able to live on  their own.  Things had happened that made that clear.  They were going to have to rent something( had been living in an Rec trailer and sold it)  and then have 24 hour in home help.  Assisted living seemed like a better fit. 

Start doing virtual tours of area assisted living centers.  Read up on what they provide -  try to imagine your LO there.   Then call and see if you can visit the outside of the property and if they will provide you with cost specifics, etc.  Be ready in case she needs to go there. Don’t base a long term situation on Covid restrictions.  

MN Chickadee

Whatever you decide, have a back up plan. Things can change in an instant for many reasons (her needs suddenly progress and you can't handle them, your needs or health changes, life throws some kind of curve ball etc.) I would research and be on wait list at a couple facilities either way. I will say that usually by the time people are starting to think about moving their loved one with dementia  to assisted living that ship has sailed and memory care is more appropriate. They provide the most routine, structure, oversight, and assistance. Based on what you have shared it sounds like she is a candidate for memory care, or a at minimum a high acuity assisted living with very specific add-ons for memory care. A person with no short term memory will likely not fit in the social activities of AL either or get the most out of the socialization aspect, activities will not be designed for her and her peers will not be cognitively impaired. 

Whether home care or a facility is best is something we can't answer, it is different for each family. And what is right for you/her now may not be right in 3 months. Hence the back up plan. Most forms of dementia bring incontinence, night waking, needing help with bathing and personal care, and much more. People who successfully do it at home usually need a good support structure and respite. It depends on resources, especially assets, family and friends who will help, your own circumstances/job/family/needs/health, and much more. If you are able to cover much of the care hours yourself or with family, keeping her home is more cost effective. Once you are hiring help for many hours per day it adds up. In most areas, an aide coming in costs at least $20 an hour, sometimes much more depending on your area. A month of care might be $15,000+ whereas a facility would often be half that. It is important you see an elder law attorney for financial planning. If she does need a facility, state Medicaid will sometimes pay if she has exhausted her funds but this takes careful planning and applying. Important to do care and estate planning either way. 

To answer your question, she may be isolated in her room in an AL but a memory care is much more likely to get her stimulated. At my mom's MC they are good at coaxing people out, and even the ones who are in a wheelchair or mostly comatose are brought out to be around people. They eat together in the dining room and all are encouraged to partake in activities. The activities are designed for a person with dementia. The activities and life engagement staff are trained in dementia and good at figuring out what the person will emjoy. The staff bring their pets, they have sing alongs and music and bring in musicians and have a locked courtyard so people can go outside any time they want. All MCs are not created equal, so it is important to vet them. Word of mouth is often the best testament to the quality of a place. Tour, talk to other family members there about their experience, ask about staff training, see if there are some long term staff, try the food. 

MyRacket

Thank you for your  very detailed advice. This will help in our decision too.

Cobalt

You've given a good post for all of us thinking about transitioning.  But there is a real problem many of us in the US have right now that is not showing signs of changing soon.  For a year now in our area (Phoenix) there ARE NO FACILITIES accepting new clients in assisted living, nursing care or memory units.  These places are full and they are also dealing with Covid outbreaks with residents and staff.  Getting a new resident means that facility is taking on a big risk of exposure.

So while we deal with my son with EO, the answer to "when should he move" is not a choice and we don't have options.  We must do all we can at home.  Yes, our plan has always been to have him stay home, and that's not a change.  The change is dealing with increasing problems at home.  

Creativity and practical thinking are absolutely critical.  Oh, and I don't have time to be upset.  Depression and stress are ridiculously high and have been for this last year.  We are stuck in a cycle that we know will get worse.  At least if you are "stuck", it helps to know that you aren't totally forced into it.  For some people, being the caregiver is truly horrendous when they really can't deal with their situation.  I hope you "keep on keeping on" as they say.

MN Chickadee

In my area of Minnesota facilities have been accepting new residents all along, but especially now that we have vaccines for them. Almost all facilities around me have vaccinated their residents and staff and incoming residents. Many are also vaccinating one family member of the PWD called an "essential caregiver" so they can provide companionship and care without as much risk. I hope as vaccine roll out gets better more areas like Arizona that are so hard hit can accept new folks in their facilities, as I am sure there are some people who are desperate.

aod326

OMG Cobalt, I had no idea - what a terrible situation. As you said, the tough times are slightly easier to accept when you know you have a choice. Good luck.