Updated: Apr 17
What are the options when you feel like you're out of options?
"I'm gonna be down here in the gutter. Wake me up when it's over,"
said every caregiver everywhere at some point in their journey.
You are in the early days of this dementia caregiver journey; supporting a newly diagnosed loved one while struggling to balance the life you were living with dementia's ever-expanding demands.
You've made the heroic (albeit often impossible to fulfill) vow to 24/7 this caregiver chaos on your own until the very end. You've already compromised on that goal, dragging every relative and friend into the fray who was dumb enough to answer their phone. But even they've become scarce, it is after all a looooooonnngg voyage. Not for the faint of heart.
If you're at all like me there will prolly come a time when you find yourself in the kingdom of Don't-Care-Caregiver, your mental stuffing pulled out and scattered in the wind, your mission thwarted by exhaustion, frustration, and dread for the future.
You, my friend, are now firmly ensconced in the Don't-Care-Caregiver phase. You are not an evil Professor Coldheart. You're tapped. And when burnout has hit you that hard it's even harder to see a way through for you and your dementia person.
So, here's a primer (or perhaps a reminder for your overwhelmed caregiver brain) on the options when it feels like you're out of options.
In-home care - Agency or private-hire caregivers who come to your dementia person's home for companionship at a schedule you determine.
Dementia Day Centers - Daily or weekly gatherings for dementia folks so you can get some time away.
Temp Memory Care - Weekly or monthly temporary 24/7 care in a MC community.
Assisted Living - A senior community where they are able to live on their own with some minimal staffing support.
Memory Care - A locked community for dementia folks who can no longer perform activities of daily living (ADL) and require 24/7 care.
In-home care through an agency is one of the easier and quicker options to put in place. You call them, they come out within a few days and do an intake session with you and your dementia person, and then a caregiver shows up soon after for the shifts you have designated. If that caregiver is sick, then they send someone else instead. Agencies don't often let you screen the caregivers, which was a problem for us, but they do pick up all the work of payroll and liability. Depending on where you live and how much care your dementia darling requires they can range from $15 - $40 an hour.
Hiring in-home care privately allows you to choose the caregiver best suited to your loved one and negotiate an hourly rate, but it does come with the extra expense of payroll taxes and the additional task of keeping up with getting folks paid (HomePay and Home Work Solutions made that chore easier for us.) Besides advertising locally, Care.com is a good resource for starting your search, matching you with caregivers in your area who have a variety of skills.
Dementia Day Centers are opening back up and were a crucial tool in our caregiver strategy to get some time away from Mom to the benefit of all. In our area we had several choices from a local senior center that offered a dementia gathering one afternoon a week, to dedicated dementia day centers that operated Monday through Friday. They are also the least expensive option on this list. Check with community and senior centers, as well as your county or state department of aging for opportunities in your area.
Requiring extended downtime for your own purposes? Travel? A scheduled medical procedure? An epic bender that could result in jail time?
No worries! (Who am I kidding? There's always worries in dementia.) There are memory care facilities that offer temporary stays for a week, two weeks, or a month-to-month residency. Not all MCs have this option, so call around (ideally before burnout has you running for the hills with no backup plan!) to find out if it's offered at facilities in your area.
Assisted Living communities can be a gawdsend to the newly diagnosed and their families. When it's getting to the iffy stage of a dementia person living on their own, but they are still capable of accomplishing their ADLs (dressing themselves, maintaining hygiene, eating, taking medication) assisted living facilities offer a modicum of structure and support in a community of their peers that could buy you time to figure out the plan for dementia's future progression.
Once your loved one has lost the ability to perform their activities of daily living the AL admins will let you know they gotta go elsewhere, so if you're going down the assisted living path find one that also has an on-site memory care community for an easy transition should you take that fork in the road later on.
And unless you all are filthy rich, I recommend choosing an AL/MC community that will eventually take Medicaid. Not only will you not have to move them again, but also if/when your dementia person runs out of funds the memory care facility will help facilitate the Medicaid application process. No small feat there.
Memory Care is a great solution for many a dementia household. Memory Care communities offer a group living environment, usually with a choice of private room or shared, and often with outdoor spaces for your dementia person to access, but locked down and secure, with weekly activities, nursing/medical services, and 24/7 care.
There's no cookie cutter solution!
My sister and I initially had no intention of accessing any of these options. We were in it to win it! (Stop laughing! Now I know that's a tarnished trophy at a heavy price. Early days, eh? We all start out as newbies.) Over our 5-year caregiving stint she and I used a combination of these strategies to give Mom and ourselves the best care possible.
Our first year we had agency help 3-days a week for about 4 months. Mom was a little too cognizant to perceive it as anything other than a "babysitter" for herself, so we dropped the service and shouldered on with just us two.
About a year later we utilized dementia day centers to give ourselves breaks in our caregiver weekdays. Mom was more progressed in her disease and (most days) enjoyed her time with staff and participants, and def benefitted from the socialization outside of her two daughters! It was a great addition to our caregiver mental health, but we were still getting ground down.
Eventually we went with memory care which turned out to be a very expensive 5-week vacation from our Mom.
MC did not work out for our family (hoh, boy!), but it got our creative juices flowing to reimagine the caregiver journey that would fit our needs yet again.
Our final, and lasting solution, was to privately hire a p/t live-in caregiver four days a week. MotherMInder to the rescue! Did we fart unicorns while frolicking through a field of daisies for the rest of Mom's journey? Nope. But there were way fewer Don't-Care-Caregiver days in our little cognitive decline kingdom.
And, my fellow caregivers, that's the dementia best-case scenario we're all trying to achieve.
P.S. Got any other respite suggestions to share with the crew? Toss 'em in comments! Sharing your successes, and even failures, is gratefully appreciated!