Some people make the promise to care for their loved one at home until their last breath. That is a beautiful thing.
Other people have that same desire and that same intention. But things outside their control, and other life circumstances, take that ability away.
Careblazer, every caregiving situation is different. So before we talk about whether it’s time for memory care, a nursing home, assisted living, or any care beyond what you’re providing at home, I want to be very clear. Whether you’re caring for your loved one at home or visiting them in a care facility, it’s all okay. You are still a Careblazer. It doesn’t mean anything horrible about who you are.
A Different Level of Care, Not a Higher One
Coming from the health care world, I used to call this a “higher level of care,” because the person needs more care.
But after talking to caregivers day in and day out for the last 14, 15 years, I realized that sounds negative. It almost suggests it’s a better level of care, and a lot of Careblazers have a hard time with that.
So I want to be very clear. This is just a different level of care, a level of care outside of the home. It doesn’t mean it’s better. Sometimes it’s better. Sometimes it’s not.
Here are eight signs that someone with dementia might be ready, or that you might want to start thinking about a different level of care.
1. Safety Concerns: Wandering, Getting Lost, Unlocked Doors
This is probably one of the biggest signs. Watch for behaviors like:
- Frequent wandering
- Getting lost, even in familiar places
- Leaving doors unlocked or open
- Letting strangers into the home, especially if they live alone
- Not knowing how to respond to an emergency, like not knowing to call 911, or not even realizing something is an emergency
- Forgetting to turn off appliances, like the stove
All of these should start to raise a question. Can this person continue to live alone? Can they continue to receive care in the home?
Because once these safety concerns show up, we’re basically getting to 24/7 supervision. And I don’t know a single human being who has the ability to provide 24/7 supervision.
We often need a team.
2. Incontinence: When Accidents Become Too Much
Another very common reason families start to explore a different level of care is incontinence. Your loved one is no longer able to recognize the need to use the bathroom, so they’re having accidents that take a lot of cleanup and a lot of your time.
Yes, this can be done at home. But it is a lot of work.
And often this is one of the deciding factors that pushes a family member over the edge, to realize, “I can’t keep doing this on my own.”
3. Aggressive Behavior (and Why a Facility May Say No)
This is a hard one. It should start you thinking about a different level of care, but unfortunately a care facility may not accept your loved one because of it.
So it’s a catch-22. You realize you need a different level of care, and the care homes and memory care facilities say, “Oh, that’s too much. We can’t handle it.”
This sign is about physical aggression toward family members or caregivers. Or extreme suspicion and paranoia, where your loved one is very confrontational and accusatory toward family.
It might take very close teamwork with mental health professionals. A geriatric psychiatrist can help you think about medication options. A geropsychologist can help with what you can do that doesn’t involve medications, and how you might adjust your own approach.
If your loved one has become mean or aggressive, I go into why that happens in why some people with dementia become mean.
4. Declining Physical Health
Here, your loved one needs so much extra help to follow their recommended treatment plans that it becomes too much for the family member. For example:
- More falls and a higher fall risk, when it’s really hard to watch them 24/7 to make sure they don’t fall
- Mobility problems, where they have significant difficulty moving around, even with a cane, a walker or a wheelchair
- Becoming increasingly frail
All of that puts a lot of physical demand on you.
5. Increasing Difficulty With Daily Tasks
This can go along with declining physical health. Your loved one is having significant difficulty with, or may no longer be able to do, the daily tasks they have to do: dressing, bathing, grooming, toileting.
These are absolutely things people can do at home. But it becomes harder and harder. Especially if all of the care is on one person, if that one person still has a job, or if the main caregiver has physical problems of their own and is having a hard time with the physical demands of caregiving.
6. Caregiver Burnout
This is a really big one.
Ultimately, how do you decide when someone is ready for memory care or another type of care? It’s really when the family member decides. It’s really when the main caregiver decides.
Not even “I can’t do it anymore.” More like, “It’s not in my best interest, or my loved one’s best interest, for me to keep doing this, because I’m increasingly burnt out and having a hard time managing my own life, not only my loved one’s life.”
You might be struggling with your own depression or your own anxiety. You might be neglecting your own health to the point where your health is suffering. There might be a lot of strain in the family. Maybe you’re caring for a parent with dementia and it’s straining your marriage, or making it hard to raise your kids. So many different reasons.
Caregiver burnout is real. And it doesn’t mean that you have failed.
When we’re thinking about a different level of care, you can’t just think about the person with dementia. You have to think about yourself as well, because you are the one providing all of this care. If you’re not in a state to be able to provide that care, this is where we get to explore what other options might be available.
7. Social Isolation
This one doesn’t get talked about a lot for people with dementia. When we think about a different level of care, we often assume the person with dementia just won’t like it and won’t want to go.
But some people with dementia are very social. They want to engage. They want to do activities.
A place with structured activities and other people to talk to could be a reason to consider a different level of care, because it gives them more opportunity for social engagement. Especially if the caregiving situation at home doesn’t allow for a lot of outings, or you don’t have the time for a lot of activities.
8. Specialized Care That’s Too Hard to Give at Home
The eighth and final sign is kind of a catch-all. Your loved one needs some sort of specialized care that’s just too difficult to give at home:
- A complicated medication regimen
- Complicated medical equipment that’s difficult to get in the home
- Needing expert supervision of their symptoms 24/7
Those are the situations where it’s really difficult for one or two people to provide that level of care.
There’s So Much In Between Home Care and Memory Care
I know some people will say this, so I want to say it here. There’s lots of room in between caring for your loved one at home and deciding on a memory care facility:
- Help in the home
- Respite care
- Assisted living
- Adult day care programs
These signs are about when you might start thinking your loved one could possibly go to a different level of care. It doesn’t mean it’s absolutely necessary. It’s just a possibility.
The Care Facility Has Its Own Criteria
These signs might prompt you to start looking. But the care facility is going to have its own criteria too.
Just because you’re thinking your loved one might be ready for a different level of care doesn’t necessarily mean they are. That’s where talking with your health care team is important, and with the care facility you’re looking at. They’ll have their own criteria about who is a good fit and who isn’t.
There are different types of care facilities. Even “assisted living” can mean so many different things. It could be a small group home. It could be a large, multi-floor facility. They’re all going to be different in who they accept, what they’re able to handle, and the types of health care professionals on staff.
That’s where your exploration and research is going to come in handy.
If a small group home sounds like it could fit, I explain how they work in what is a group home and how it can benefit your loved one with dementia.
When Care Goes Beyond What You Can Manage
These facilities exist for a reason.
Sometimes care goes beyond what we are able to manage. And sometimes care goes beyond what we are willing or want to manage.
All of that is okay.
If you’ve already made the move and still feel worn out, I talk about why in why you’re still exhausted after memory care placement.
A decision like this is hard to make on your own. Inside the Care Collective, we come together every week for support rooms, expert Q&As and conversations with me, with more personalized support and guidance for decisions like this one. You can learn more here.
