Nursing Homes, Guilt Trips, and the Promise in Dementialand

The last time I wrote about this I got a lot of hate, but I’m hitting the topic again anyway.

Nursing homes.

I can’t tell you how many people approach me to discuss the guilt they feel after their loved one with dementia moves to a nursing home. Some of that guilt is self-inflicted…but much of it is a result of the way we as a society talk about nursing homes.

Elizabeth (not her real name) recently placed her husband who has Alzheimer’s in a nursing home.  She was having coffee with a friend when that friend said, “I hope you’re doing okay with that decision. I could never put my husband in a place like that.

Well, a place like that is absolutely the best option for Elizabeth and her husband, Bill, at this point in time. Is it a perfect solution? Of course not. Is the care he receives always top-notch? Nope. Is she frustrated at some things she sees happening at the nursing home? Of course.

Do I have a better plan to suggest for her and husband? Not at all.

But let’s review how she got to this point…

Bill was diagnosed with younger-onset Alzheimer’s in his late 50’s. He took an early retirement from his job managing a restaurant, and Elizabeth continued working as an educational aide. She thought briefly about if it would be possible to quit her job or work part-time to spend more time with Bill, but it was never a realistic option financially. Even more, they were both on her health insurance. Their kids, who have their own kids, live across the country.

As Bill’s Alzheimer’s progressed, it became clear that he could no longer stay at home by himself while Elizabeth was at work. The proverbial straw-that-broke-the-camel’s-back was when a neighbor called Elizabeth to let her know Bill was standing in the driveway in his boxer shorts in the middle of January. This would be awkward in any climate, but it was downright dangerous during the midst of an Iowa winter. When the neighbor approached him, he become agitated and took off walking down the street.

Elizabeth hired some caregivers to the tune of about $25 an hour. They could check in on Bill while she was working. However, as Bill needed more and more support, she realized it made no financial sense to pay a caregiver more than she was paid herself. To make a long story short, they were going broke.

She heard about an local adult day center where Bill could hang out during the day while she worked, but the cost was about $80 a day. She didn’t see how they could afford it. A kind family friend offered to stay at the house with Bill for free a few days a week, but that friend became less reliable as his own health started to falter.

One day Elizabeth came home from work to see that Bill–who had only been alone for about 30 minutes–had accessed the fuse box in the basement and turned off all the circuits. There was no power to the entire house. Another day she arrived home to find him on the bathroom floor. She wasn’t sure if he had fallen or just laid down…and he couldn’t remember. He also couldn’t remember how to stand up, and she ended up calling a friend for assistance.

One day Bill walked to downstairs to where they kept the cat’s litterbox. In the past, he had been responsible for changing the litter. On this day, he picked up the litterbox, dumped its contents on the floor of their bedroom, and placed the empty litterbox in the middle of their bed. If there was ever a day Elizabeth thought she would lose her mind, this was it.

Elizabeth started putting a Depends on Bill each morning after coming home several evenings to find out he had accidents during the day. She felt awful that he would sometimes sit several hours in a soiled Depends before she made it home. He also stopped eating during the day unless there was someone to prompt him. At a doctor’s appointment, Elizabeth was horrified to learn he had lost 30 pounds in two months.

A social worker told Elizabeth that Bill should not be alone in the house during the day. Then the social worker recommended in-home care and adult day services…both of which Elizabeth had already figured out were too expensive. The social worker then walked Elizabeth through pages of pages of paperwork so that she could tell her in the end that they were not eligible for financial assistance with these services.

Bill’s health continued to decline. The stairs at their home became a problem. He started having what their doctor called “night terrors.” He would get up in the middle of the night and wander outside if Elizabeth didn’t catch him first. She hung a bunch of jingebells on their doorknob as a safeguard, and every night she hoped for a solid three to four hours of sleep.

The situation wasn’t sustainable. She was drowning.

Elizabeth knew how nursing homes worked. They would pay out of pocket until the had no more money to pay out of pocket…and then he would go on Medicaid which would pay the nursing home for his care.

It was not a good option. In many ways, it was an awful option. But it was still the best of her limited options. (And I can’t help but mention we have more options when we have more money. That’s the way the world works, folks.)

She painstakingly visited every nursing home within 30 miles and talked to multiple staff members and families about each facility. She can’t say she loved any of them, but she liked a few more than others. Then she put her husband on a few waitlists. And waited a few weeks until she got a phone call.

So Bill moved to the nursing home. The move itself went better than she expected. She held it together emotionally until she was driving home and had to pull over to sob in the Taco Bell parking lot.

Their kids weren’t able to come back for the move, but they came a few weeks later. Elizabeth’s daughter said she would not have done what her mother had done; she would have quit her job to stay home and take care of her own husband if she were in her mother’s shoes. Elizabeth didn’t have the energy to explain that you just can’t quit a job when it’s your only income. She didn’t go to the trouble to explain that keeping Bill at home was becoming a detriment to her health and a risk to his as well.

Other friends and family members weren’t so reassuring either. Her son told her that she couldn’t see his dad living long with the “shitty” care that he receives. In fact, he’s taken to calling the nursing home “Shithole Acres.”

He wishes his mom had picked a better facility. He doesn’t seem to understand how much effort she exerted in “shopping around” and how available nursing home beds aren’t always easy to come by. Elizabeth knows her son is adjusting to a difficult situation and doesn’t want to rock the boat by picking a fight with him.

Elizabeth noticed that the same people who seemed most bothered that Bill was living in a nursing home couldn’t be bothered to go see him.

And sometimes that’s how it goes…

Our frustration with what we perceive as sub-par care and low quality of life in nursing homes is misdirected when we target the care partner. Throwing a guilt trip (whether intended or not) in their direction is hurtful.

We seem to think that most families deposit their loved ones at nursing homes like soda cans in a recycle bin. We use words like “abandonment” and “desert.”

Sure, that happens. But I don’t see it as the norm.

I see that every family has a story. Most nursing home placements are both the end and the beginning of a struggle. They are typically a response to a crisis rather than a welcomed new journey. They are hard for the new nursing home resident, and they are hard for the care partner. They are just…hard.

When we tell people we could never place our loved one in a nursing home, we are–in a way–saying we are better than they are. Well, a nursing home may be good enough for your family but not good enough for mine. When someone says they could never place their loved one in a nursing home, keep in mind that they’ve never had to make difficult decisions about a loved one’s care. Don’t be too harsh. They’ll get there.

When someone says they could never do that to a loved one, they are perceiving nursing home care as some sort of punishment. We just didn’t love our family member enough. Or maybe we had some sort of deep-seated resented toward them. That’s why we put them there. We joke about this…If we get annoyed with Mom or Dad, we say something about putting them in a home. And people laugh. Because isn’t putting someone in a home the worst thing you could ever do to them?

And sometimes we make the promise. We promise the people we care about that we will never place them in a nursing home. And many of us have to break that promise.

Let me say something publicly. I love my husband very much. I might, however, someday make a decision to place him in a nursing home. Not because I’m mad at him. Not because he’s not a great husband. But because it might at some point be the best available option (under not the best circumstances) for my family.

My husband knows this because once I was doing a speech that he happened to attend when I blurted out, “If you get in a car accident on the way home and have an awful brain injury, you’ll have to live at a nursing home because I can’t quit my job and our house isn’t accessible.”

(The joys of being married to me, right?)

But many spouses before me have had to make difficult decisions to place a loved one. Who’s to say I won’t be one of them? I refuse to make promises I can’t keep. I promise to always take the best possible care of my husband, but I can’t promise he will always live at home.

If you have had recently been through the process of nursing home admittance with a loved one, let me say something to you.

I know that the process is difficult, and I know you likely wonder if you could have somehow made different choices. Maybe you think the nursing home is a pretty nice place. I hope so. But you might see that your loved one doesn’t receive the care that you wish they received.

Perhaps you don’t know when to speak up and when to stay quiet. Maybe you struggle everyday to drive there and see your loved one in their nursing home room. Or maybe you struggle every day to say goodbye and leave the nursing home. And I’m guessing you are struggling with at least 99 problems I haven’t mentioned.

But know this: A nursing home is often the best option that we have under not the best circumstances. If you had won the Powerball, you could have paid for 24/7 live-in care. But you didn’t win the Powerball. If you had been born into money, you could have chosen to redesign your home or even move to a home that works for someone who needs care. But you weren’t born into money.

We are all just people trying to make it with the resources we’ve got available.

This means that the best care we can afford for a loved one might be nursing home care.

And unfortunately, this care is often imperfect and less than ideal–because our system is imperfect and less than ideal.

But please stop beating yourself up because you are part of an imperfect world.

 

 

 

 

 

 

 

 

15 thoughts on “Nursing Homes, Guilt Trips, and the Promise in Dementialand

  1. Thanks Elaine. I always find your blogs full of common sense wisdom, and never fail to share with the group I run and beyond. As someone living with young onset dementia, I couldn’t want to drain the life out of any loved one in the name of my future needs. I could never forgive myself. Definitely the best decision out of a bad circumstance, with no blame attached

    Liked by 1 person

  2. Yep. One of the best things our mom ever did for us was to tell us, over and over, that if we need to put her in a nursing home, we should do so, no matter what she might say at the time. So far, Mom is fine in assisted living, and thank God she has a pension and can afford it. But my mother-in-law was in a “home” for two years, and I know my husband felt guilty about it. It was the best solution he and his sister had for his mother’s needs. That’s the way it goes.

    This post is not just good, it’s important. Thank you.

    Liked by 2 people

  3. Thanks Elaine for a powerful post. Our story is the same, only the details are different. I’m ashamed to say that early on I was one of those people who said I would never place my husband in a nursing home. I had little insight to the insurmountable challenges we would face, trying to keep him (and me) safe at home.

    As the challenges grew greater, and as the safety of both of us became an issue, I realized that nursing home placement really was the best option for us. As a friend once said to me, we never stop being caregivers. He is still very much a part of my life, and I his. The care that I give to him now is within the safety of the memory care unit.

    Liked by 2 people

    1. Don’t be ashamed that you said you’d never place your loved one in a nursing home…you didn’t have the knowledge and understanding at that point. And YES. Caregiving definitely doesn’t stop when your loved one is in a facility–it just changes. Thanks for reading!

      Like

  4. Thanks for this, Elaine. I can only add that the prospect of “24-hour-home-care” includes some big challenges as well – managing a constantly rotating cast of caregivers is a daunting proposition, on top of perhaps losing the privacy and quiet of your home, even if you could afford it.

    I also wonder if a good memory care/assisted living situation might actually restore some of the relationship that’s been lost in the years of struggling to look after someone who doesn’t realize they need looking after…to be able to just visit and enjoy each other’s company sounds pretty good to me right about now.

    Liked by 1 person

    1. YES. Thanks for pointing out the in-home care challenges. Honestly, I hadn’t given thought to that aspect when I wrote the blog post, but I know that I would NOT do well with people coming in and out of my home in such a situation. Thanks!

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  5. Our kids have told us they’d never put us in a home, but I think I’ll start telling them in reply that it might be a gift to me as well as to them when the time comes that I need more care than they are able to give. It’s not that they don’t love either my husband or myself, but that we all have limitations–financial, emotional and physical, and we need to live our life as fully as we can within those limitations. Thanks for being here. Life is often a case of ‘it is what it is’ and we do the best we can with what we have.

    Like

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