Determining if a move will benefit a loved one living with Alzheimer’s or some other form of dementia
Once Alzheimer’s or some other form of dementia touches your life, you will be required to make tough calls on a pretty frequent basis. Chief among those concerns may be answering the question: “How will I know?”
How will I know if, when, and how I should transition my mom, my brother-in-law, my wife into an assisted living facility or memory care unit? How will I know if I can provide adequate care at home? How will I know when it’s time to enlist additional support, and from where? How will I know if I’m approaching burnout?
“We get that question a lot,” says Edith Gendron, Chief of Operations at the Alzheimer’s and Dementia Resource Center in Winter Park, Florida. “How will I know?”
The answer to the inquiry, as you may guess, is complicated, and far from one-size-fits-all.
“We have someone that’s been in one setting, (and) we’re thinking about putting them in another setting. There’s a lot of moving pieces,” says Dementia Care Specialist Teepa Snow, whose company, Positive Approach to Care, is designed to support people living with brain changes.
For instance, you’ll want to look at your loved one’s history in previous living environments.
You’ll want to ask yourself, “Most recently, what about the place they were in for them did not work, and what about the place did work?” says Snow, an occupational therapist with more than four decades of clinical and academic experience under her belt.
You’ll examine all facets of their well being, too – physical, psychological, emotional, and social.
“One of the things that we can look at that is important, too, is: How isolated does staying home make both the Care Partner and the person living with whatever form of dementia? If breaking that isolation is beneficial, and it almost always is, then that’s a consideration,” says Gendron.
You’ll assess the overall support your loved one requires.
“How complicated is their medication regime?” asks Snow. “How complicated is their health care regime? Do they make it to meals without being cued or prompted, or do they need (support) not only to get to the meal, they need help in order to stay focused to eat the meal?”
You’ll take stock of your partner’s current strengths and struggles when it comes to the brain changes they are experiencing. Have they encountered sleep issues, paranoid ideation, or depression for instance? How prepared are you to handle these specific challenges and what is your relationship like with your loved one?
“Who else is involved or could be involved and has been involved?” says Snow. “So who else is around? We call them stakeholders — people in the setup you know. Is there someone who is going to manage the medical aspects, like I have a nurse involved or I have a physician or I have a home care agent?”
Gendron adds: “And another consideration is: Do they live in an area where you can piece together alternate forms of care? Do they live in an area where adult day health care or just adult day care is viable? Is it good? Is it stimulating? Is it a good adult day care — beneficial for your person?”
It’s important to become clear on the workability of the current environment.
“Is it functional for them? Is it friendly for them or does it feel sort of not (friendly)?” says Snow. “And also, how forgiving can we make that environment, so if a mistake is made, nobody is going to get harmed? So there are deadbolts on the door, and they do keep somebody in, but we have the key hidden right above, so that if there is an emergency, we can access and release the deadbolt. If somebody does go out a door, there is an alarm that sounds for someone that alerts us they’ve left the area. So that there’s recovery more readily available versus discovery later.”
You’ll determine how well the environment caters to your partner’s schedule, both in terms of what is currently working, and what you’d like to add, Snow says.
And don’t forget to assess how the situation is impacting your own health.
“Is that Care Partner up all night? Is that Care Partner — from stress-related caregiving — are they experiencing health issues? Is the Care Partner so emotionally distressed they’re concerned about their ability to be compassionate and loving?” says Gendron. “Sometimes it is a matter of finances, because it is extremely expensive, more so, to try to take care of somebody 24-7 with help at home. Paying for home health care 24-7 is about $20,000 a month, and that’s here in Florida.”
Your answers to all of these questions will form the answer to your question: “How will I know?”
But if this feels intimidating to confront, you could also consider bringing in an occupational therapist or a geriatric care manager to support you in this process.
“Occupational therapists are trained to look at environment, and task, and person, and resources,” says Snow. “You do need an OT who’s knowledgeable about dementia, or you’re not going to get what you want. It’s a shared experience. You can’t just walk through the environment and say, ‘Safe. Unsafe.’ It has to be the trio working together looking at space and function, and so it’s got to be somebody who’s comfortable with people living with dementia and their partners to talk through, work through, walk through, look at, without making it feel like you’re judging the person.”
And, if you’re living in the Central Florida area, you can make a free care coaching appointment with the Alzheimer’s and Dementia Resource Center. The team members will support you in connecting with a memory disorder clinic, elder law attorneys, and tons of other community resources. They can also talk you through what your options are when it comes to assisted living facilities and the various speciality licenses you may encounter in your research.
“We talk about why it’s important to learn everything you can about the type of dementia your person has developed, because we can then better assist you with understanding the brain changes that will most likely occur,” says Gendron. “We provide information on whatever resource gets revealed, what you might need, and then we encourage them to know what workshops are coming up. And they go away with at least the next steps or a kind of overall plan.”
But what happens if you determine a move is in order? How do you approach this entire process with love, grace, and respect for both yourself and your loved one?
We explore all of these questions in an extensive interview with Teepa Snow, which you’ll gain immediate access to when you choose to become a paid subscriber. (Not ready to pay? No worries! When you opt-in for a free subscription, you’ll continue to have access to high-quality quarterly publications, like this one).
When you choose a paid subscription, you’ll receive an additional quarterly newsletter, with more journalism related to Alzheimer’s or some other form of dementia, as well as self-care tips and tools (like guided meditations).
And if you live in the Central Florida area, consider attending our May 3 luncheon, How does a dementia diagnosis impact your options in Senior Living? Or, check out this episode of our podcast, Informed Aging, which provides a good basis for different available living options.
