Nursing Homes and Guilt Traps in Dementialand

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

11 thoughts on “Nursing Homes and Guilt Traps in Dementialand

  1. Wow, Elaine – thank you, thank you, THANK YOU!!! This is the article that should be in every caregiver’s pocket, for when the time comes. It should guide our discussions among ourselves, as caregivers, and between spouses, and children and parents, before they need to make these decisions. This issue needs to be ON THE TABLE.
    The biggest social trope as you point out is the “I’ll never put you in a home/ Just promise to never put me in a home”, and that truly needs to change.
    When people can actually think and deal with this need well in advance of it, then we are able to influence the type of facilities that exist. But as long as no one can talk about it, well, we get whatever someone is willing to build and staff. Might be fine, might be awful, but I bet things would change if the culture could open their eyes and deal.
    Thanks, again!

    Liked by 1 person

  2. You hit the nail on my head this morning, Elaine. I’ve been struggling with this issue for some time. I even had a long conversation last week with the woman who owns the caregiving organization that I use for help with my husband. She said the same things you’ve said above. This was so helpful. Thank you.

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  3. We are all walking that direction. If you honestly feel this way in regards to your parents, get a dam good look at the inside of those homes you put them in as the chances of you being there in your time of need are very high. Oh, and when you shove them in a home, that home deserves the right to own them and everything your parents have ever worked for to give them the care they attempt to give. So yeah the nursing home needs every penny of every entire thing they’ve ever worked for and you deserve and need nothing. Not one red cent from them.
    I find this article very ignorant and selfish and unkind and appalling.

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  4. Elaine , it isn’t easy to bring humor to this hideous disease and the accompanying decisions it brings. Your words so adeptly capture what so many of us face daily after we moved our loved one to a nursing home. My heart now feels a bit lighter and I thank you!!! I will spread the word. Bless you!

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  5. You are 💯 right! I felt so guilty when I placed my mom a couple of years ago. So thankful that I did she was so well taken care of. I got to be a daughter again instead of a full time care giver. She passed the end of April. I can honestly say I have no regrets! Love your blog!

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  6. Thank you for your honesty… Thus post came at a time when I really needed to hear your words.. “Just stop…”. I like that you said that.. it’s so true. My mind has been churning about these very things…Jill😛
    Jillbrandon.wordpress.com

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  7. Thank You what is happening to us right now , My mum is in retirement home for rehab (fell and broke her hip on my watch , only one hour before found yes i feel so guilty ) and respite and looks going to go permanent. Thanks for writing this

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  8. Elaine, this post needs to be read by all members of the loved one’s family who has memory issues. Great job! In my experience, there’s one person who usually is in charge by default or by being more caring and that person gets the brunt of criticism out of the others’ guilts for not taking on the loved one in their time of need. It’s hard to be that person who’s responsible and criticized. But often, we are doing exactly what is right for our loved one which is hard enough as it is without others being critical. Having put 2 loved ones into a memory care facility, I understand. But I do stand by that the facility was awesome, they made friends and loved being together and it was the right choice for our family, even though some weren’t as complimentary. But one needs to walk in someone else’s shoes before criticizing. That’s the piece that everyone so easily forgets when they voice their negative opinions.

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