I’ve worked with a lot of caregivers who wanted to avoid nursing home care at all costs. And for one reason or another, they ended up placing their loved one in a nursing home anyway, despite any promises or wishes they’d made.
So if you’re wondering whether your loved one with dementia needs nursing home care, here are the top three reasons I’ve seen caregivers have to make that move. First, two things I want to say before we get there.
Not Everyone With Dementia Needs Nursing Home Care
Some people with dementia are able to live in the comfort of their own home by accepting help from family, friends, neighbors and community agencies. Some live in a family member’s home, like a child’s or a grandchild’s. Others need a step down from nursing home care, such as an assisted living facility, a personal care home or a group home.
The best place for your loved one to live and grow old depends on several different things:
- what help they receive
- their willingness to receive help
- their physical abilities
- the specific dementia symptoms they have
Not everybody with dementia requires the same level of care. Somebody with mild Alzheimer’s disease can need a totally different level of care than another person with mild Alzheimer’s disease. Same disease, same stage, different care.
People Who Place Loved Ones in Nursing Homes Aren’t Horrible People
This is the one thing I really want to emphasize. People who place their loved ones in nursing homes are not horrible people. They don’t love their loved ones any less than people who care for their loved ones at home.
In fact, sometimes placing your loved one in a nursing home is the best thing to do for your loved one. I know it can come with some guilty feelings. But sometimes it really is the best thing for them.
So if you know somebody who is caring for their loved one at home, don’t compare yourself to them. That’s not fair. Situations are different. People with dementia are different. And the people caring for them are different. You have to do what is right for you and your family, no one else.
As you start to think about where your loved one will get the best care, be open. And be kind to yourself. You need to do what is best for your loved one, and for you.
If the guilt is the hardest part for you right now, I talk more about it in how to stop feeling guilty as a dementia caregiver.
Here are the three reasons I see most often.
1. Safety: When Your Loved One Is No Longer Safe at Home
If your loved one is no longer safe living at home, they may need nursing home care. Here are a few specific examples.
Wandering and Getting Lost
Your loved one likes to leave the house, whether they live alone or with others, and they’ve managed to get out despite alarms, different locks and GPS trackers. That might be a sign they need a higher level of care.
We all know it’s difficult, pretty much impossible, to keep eyes on somebody 24 hours a day, 7 days a week. If your loved one escapes the home, wanders and gets lost, that’s a big concern. Especially if they live somewhere the temperatures get really hot or really cold, or in a high-traffic area.
Not Recognizing Dangerous Situations
Another sign is when your loved one can no longer detect dangerous situations. Letting strangers into their home. Giving out personal information over the phone, through email or in person.
Unfortunately, I’ve known many people with dementia who have had their life savings drained because they opened themselves up to strangers, in their home, over the phone or through the mail.
I go through how to guard against this in how to protect your loved one with dementia from scams.
Not Knowing What to Do in an Emergency
Your loved one may not know what to do in an emergency, or may not be able to tell what an emergency is.
You might be surprised. If you asked your loved one what to do in an emergency, they may not remember to call 911 anymore. They may not remember the number. Or they may not be able to tell you what kind of situation would need a call to 911.
That’s an issue if somebody isn’t with them 24 hours a day, 7 days a week.
These are just a few examples of safety concerns that may suggest your loved one is ready for a nursing home or some other higher level of care.
2. Losing Control of the Bowels and Bladder
The second reason comes straight from the research. There have been plenty of studies on this, and in fact it tends to be a common one among the caregivers I work with. It’s when your loved one with dementia starts to lose control over their bowels.
This gets to be a really difficult time in every caregiver’s life. Your loved one is having lots of accidents that take a lot of help and time to clean up.
And unfortunately, many people with dementia don’t like to stay clean. They may not want to change their undergarments or clothes. They may be hesitant or scared of the bath and shower. All of that raises the risk of infection and other health problems.
So losing control of bowel and bladder tends to be one of the top three reasons people need nursing home care.
3. Caregiver Stress
The last reason is perhaps the hardest one for caregivers to hear, and that’s caregiver stress.
I’m not talking about the normal level of stress that comes with caring for a loved one with dementia. I’m talking about the level of stress that:
- makes it hard to get yourself out of bed in the morning
- has you at risk of losing your job, because you’re constantly late, missing work or leaving early to take care of your loved one
- has your important relationships hanging on by a thread, because you’ve spent so much time and energy on your loved one that you’ve neglected your own kids, your own marriage and your own friends
- has you feeling depressed and anxious
- has your health suffering, because you’ve put yourself on the back burner and made your loved one the number one priority
If any of these sound familiar, and I’m guessing for some of you they will, this is a sign that your loved one may need a higher level of care. So that all the pressure is not on you.
If you’re weighing this now, I walk through eight signs, these three among them, in is it time for a different level of care?
Deciding where your loved one should live is one of the heaviest decisions in caregiving, and it’s hard to think clearly when you’re already running on empty. Inside the Care Collective, we talk through decisions like this one every week: what your loved one needs, what you can realistically carry, and how to take care of yourself whichever way you go. You can learn more here.
