Think of them as a place where you can drop off a loved one with a form of disability for the day. That said, it may also be the first stop on a loved one’s journey before moving on to an assisted living or memory care facility.
In Spokane, WA, we have two Adult Day Services and have had the pleasure of using both. They are both not-for-profit organizations. One is Catholic corporate-driven (Northside), while the other is more down-to-earth, run by family members (Garland district), which rents space from a church. Both are affordable with low day rates!
They both take on individuals with disabilities, wheelchair bound, and dementia, where they differ is in the cost per day, the environment itself, and the service they provide.
Because my wife Kimberly has Behavioral Variant Frontotemporal Dementia (bvFTD) I found both lack the experience to handle such a person. They try, but they do not have trained individuals to handle such a disease, nor do they have the manpower to do so.
The biggest downfall of both services is that they were created to provide respite for primary caregivers like myself. However, there is a significant lack of communication between the directors and the primary caregivers—those who need respite time, the ones who pay the bill. They really need to work with and communicate with the primary caregivers—that’s a given!
If you use Paratransit (a mini transit bus for the elderly and disabled individuals), for example, for the daily round-trip, I found that some drivers lack experience working with someone with bvFTD. Their training is mainly through training videos rather than firsthand experience.
I found my wife was coming home more stressed out, attending an Adult Day Service, and riding the Paratransit to and from.
Currently, I work with caregiver support and home support programs, and hire care companions who come in for two hours a day, 3 days a week. Their job is to color with her together to help stimulate her brain. Consider them as higher-paid babysitters. It is possible that you could hire someone in their senior year of high school to help out for a few hours a day.
This is not a smooth sailing system by any means. That, too, has its own hiccups. Mainly due to their lack of communication with primary caregivers. Calling but not leaving messages. The most disturbing issue is no-show—caregivers who do not show for their scheduled shift—and the central office not calling to inform you what is going on. Or your caseworker assigned to you doesn’t return calls to resolve the issue. The bottom line—a broken system all around!
For my sanity and to keep Kimberly calm, it was best to use in-house care, which can be more expensive than Adult Day Service. I have an in-home business, which made it easy for me to decide to keep Kimberly home, and she does better in her own environment. She marches to the beat of one’s own drum!
Hello, Brijhae here, one of Kimberly’s care providers. I found Leon’s post interesting, and I just wanted to come aboard and support what he’s saying. Not everyone knows what behavioral variant Frontotemporal Dementia (bvFTD) is and how serious this disease is. We were trained on the different types of dementia, but not on their specifics.
I have had the pleasure of working in adult care facilities and in-home care, and in-home care is by far the most rewarding. How amazing it is to help individuals live safely and independently in their own homes, where they are comfortable and where they belong. Thankful for these facilities (if you can afford them), but the joy of watching someone get the support they need to stay in their own home is so rewarding.
The only thing that is sad is watching well spouses get caregiver burnout. My heart goes out to the primary care providers, or spousal caregivers like Leon, who give their all every day to take care of loved ones who no longer can take care of themselves because their brain no longer functions properly.
There has got to be some change in caregiver support, especially for spouse caregivers. Adult Home Care should be affordable. Leon does have the support of our team, but that is only 3 days a week (Monday, Wednesday, and Friday) for 2 hours each, because that is all he can afford.
So, I get the easy part of the gig by being a care companion to Kimberly for 2 hours of activities, mostly coloring. But what about the rest of the time before I get there and when I leave? Those times are not easy for Leon once my shift is over. If you have worked with any form of dementia, you will know what I’m talking about. My time helping Kimberly, Leon has educated me on the subject and explained that bvFTD is the worst of all the dementia classes and has the shortest life expectancy for Kimberly. And I can see the 3 to 5-year-old state of mind when I work with her.
I wish they’d lower the costs of home care for clients like Kimberly and Leon so patients can get the right amount of care they need and deserve. So, people like Leon aren’t overwhelmed and get caregiver burnout before the day ends. He needs respite time to recharge his batteries, find a little time for himself, and, in his case, continue running his home business while still taking care of Kimberly.
Anyways, thanks for listening to me rant. If you have worked with a loved one suffering from bvFTD or any form of dementia, please share your experience by leaving a comment!