Welcome to the Real and Non-Perfect Dementialand World (and What to Say if You Want to Make Me Super Angry)

I overheard a bunch of people chatting before a support group meeting. There was a middle-aged guy updating some other family care partners about his wife with dementia. I need to tell you that I am going to change a few details here so this person isn’t as identifiable. It’s pretty typical that I do this, but I’m making a special effort here because I need to tell you about something he said that had me pretty bent out of shape.

The man was well-dressed and handsome. He seemed confident, and I could tell that he was a long-standing member of the group that others looked to for support. I couldn’t help but think he looked a bit like a younger-ish Harrison Ford…think somewhere between Star Wars and The Fugitive. 

He explained that his wife was continuing to live at home, although her condition was progressing. She was now unable to walk without assistance. She needed help with bathing, toileting, and eating. He told the group that his friends and siblings were trying to convince him to considering placing her in a nursing home, but he “could never do anything like that to his wife.”

“I love her too much to put her in a place like that,” he said, shaking his head with a huge emphasis on the word “that.”

I know he loved his wife. I know he was committed to keeping her at home because he cared about her. Yet his comments made me cringe. I cringed because a lot of people love their family members with dementia but are unable to keep them at home. I cringed even more because I knew he was talking directly to some of the people who were unable to keep their loved ones at home, and I worried he was making them feel like crap. Everyone’s situation is different, and his comment came off as judgmental considering his audience.

I do a good job of biting my lip in such situations, but my husband tells me I don’t have much of a poker face. I’m sure I was glaring at this guy. If looks could kill, he would’ve dropped dead before the support group meeting even started.

I have no doubt that this gentleman was a tremendous care partner for his wife. However, he also had some resources that helped him keep her at home; some resources that not all care partners have. First, he was in his late 40’s and in good physical condition. He was able to lift his wife, who happened to be much smaller than he was.

I found out later that he was a successful business owner in the town I was visiting. Although he had a busy career, he could often work at home and had the ability to make his own schedule. In addition, he had the financial resources to hire in-home assistance for a several hours a day. Furthermore, he seemed to have friends and family who were willing and able to come over to give him a break when he needed one.

I give the guy a lot of credit. He had a system in place that allowed him to keep his wife at home at a point when many people with dementia have transitioned to a nursing home. It took organization and dedication, and I have no doubt he did it out of love. He had the option to keep her at home. It’s wonderful he was able to do so, but it isn’t the right decision or a feasible alternative for everyone.

I have to be honest and tell you that his line about “loving her too much to put her in a place like that” really stung. I don’t think he meant to offend, but that doesn’t change the fact that it just plain hurt. It stung professionally because I work with many family care partners who must make the choice to place a loved one with dementia in a facility–not because they don’t love them–but because it is the best option they have with the resources they have available.

It’s a rough choice to make, and I spend a lot of time telling these care partners that they need to let go of the guilt. I care about these people, believe they love their family members, and know how hard they’ve tried to make the right decisions on a difficult road.

Perhaps it also stung me personally. My grandma spent a short time in a nursing home at the end of her life. Although I’m sure he didn’t mean to, this guy had implied that my family didn’t love her enough. We did love her enough. That guy should be glad I didn’t tell all my cousins about his comment.

Love is important. I don’t know what life is without love. Yet, love doesn’t erase our financial, physical, and emotional limitations. We can’t all quit our jobs to care for a loved one 24/7, and not everyone has a flexible work schedule. I talked to a care partner who recently told me that she had exhausted all of her vacation taking her mom back and forth to Mayo Clinic to see a neurologist–before her mom even had an Alzheimer’s diagnosis. Her boss had told her if she had to leave work again due to a crisis with her mom, she’d be fired.

Some care partners have kids. The other day I talked to a stay-at-home mom who takes care of her three young children during the day. It seems as if some members of her family have assumed she can help her mother-in-law with dementia during the day….because she doesn’t work. (I have to be honest in telling you that taking care of three small children seems like more work than what I do at work.) Even the most amazing women have their limits.

Sometimes in our attempts to keep our loved ones with dementia at home, we overlook potentially risky situations. They may be risky to the person with dementia (e.g., wandering, falling down stairs), but they may also be risky to the care partner. It’s no secret that caregiving for someone with dementia can take a toll on a care partner’s heath. I’m talking about both physical and mental health. (No matter how much tiny women love their spouses with dementia, they still can’t lift large men without getting hurt. And people need sleep.)

I can show you research that supports this, but I’ve seen plenty of first-hand evidence as well. Often, it is not a change in the person with dementia’s health that triggers placement in a facility. People with dementia frequently move to nursing homes because their loved ones have increased health concerns and can no longer provide care.

I recently met a school counselor whose husband has Lewy-Body dementia. She knows he will soon need 24/7 care, and she understands that it is not realistic, considering her family situation, that he will stay at home for the duration of his disease. She is struggling with the right time to transition him to an assisted living.

I was livid when I found out that one of her immediate family members had said to her, “If he were my husband, I’d quit my job to keep him at home.” I’m pretty sure she could see the veins in my forehead when she told me this… Sure, if you are financially able to quit your job and this is the right option for you, that’s fantastic. But this is the real world. Who is going to pay the mortgage? And this particular woman said that her job was the only thing keeping her sane on this journey.

Someone I know said something a few weeks ago that has stuck with me. I had what Oprah would call an “aha moment.” This woman told me that her daughter had been raped decades earlier. After the rape, many people made comments that started with “If that were my daughter, I would….” Of course, they would then end the statement with something that she had not done. She promised herself that she’d never make a similar statement to someone who was going through a tough time. After she told me this, I made the same promise to myself.

I’ve heard many people say that they would never place a loved one in a long term care facility. If you want to see the veins in my neck pop out, say that to me. In a perfect world, we could confidently say we’d never make that choice. If this were a perfect world, I could say that my love would keep my family members from living in a nursing home. But this is not a perfect world. Love doesn’t keep people from getting sick or make them better, and it certainly doesn’t prevent nursing home admittance.

Here’s the take home message…You may have had to make the hard decision to transition your loved one to an assisted living, nursing home, or memory care community. (And if you aren’t there yet, this may be in your future, whether or not you realize it.) You probably struggled with it. You hoped the timing was right, but you’ll never know for sure. Some members of your family may have even disagreed with you on some aspects of this decision, and you had to defend your thinking…when you weren’t so sure yourself. There were probably moments where you felt like an awful person.

Don’t let anyone make you feel like you made the wrong call because it’s not the one they made or because they claim it’s not the one they would make if they were in your shoes. Maybe they made a different call, but they are a different person in a different situation. And if they haven’t had to make that call, they should shut up about what they would do–because they really don’t know.

You are not less of a care partner because your loved one lives at a facility. Your responsibilities may be a different than if your loved one lived with you, but you are not less competent, less caring, or less worthy. Don’t feel like a failure. Stop second-guessing yourself. Stop feeling guilty. Stop worrying you’re not a good wife, husband, sibling, daughter, son….

You did the best you could with the options that were available to you. Sometimes life presents us with a bunch of alternatives, and they all suck. (I’ve tried to rephrase that last sentence about ten times but I can’t come up with anything better. Sorry.) You have to pick the one that sucks the least, for you and for the people you love. And then you move on and make the best of it.

Welcome to the real and non-perfect world.

5 thoughts on “Welcome to the Real and Non-Perfect Dementialand World (and What to Say if You Want to Make Me Super Angry)

  1. Ty I needed to read this and have not yet go tot the point of needing to find another place where my husband can be taken care of. When I think about it I am filled with guilt and this post helped me.

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  2. Vicki.smith@sf-fl.com On Jul 20, 2015 3:56 AM, “Welcome to Dementialand” wrote:

    > Elaine M. Eshbaugh, PhD posted: “I overheard a bunch of people > chatting before a support group meeting. There was a middle-aged guy > updating some other family care partners about his wife with dementia. I > need to tell you that I am going to change a few details here so this > person isn’t “

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  3. Dear Dr. Eshbaugh:

    I sent you an email a couple weeks ago and you so graciously replied.

    I wanted to let you know that we are taking my Mother in Law to a care facility tomorrow. We know this is for the best, as I constantly have to worry about her safety here.

    She can barely walk but tried to pull a chair over to her bedroom window and climb out. Luckily I thought to be safe and put the lock on her window so she could not lift it more than 2″.

    She has also tried several times to climb under the baby gates blocking off the kitchen. Before I removed the knobs from the stove, I caught her turning it on and placing her hand in the hot surface. When I tried to get her away, she hit me.

    She also got caught drinking antibacterial hand cleaner at day care.

    Those instances happened within the last month.

    We did promise my Father in Law that we would never place him (he passed 5/2013) or her into a nursing home. I do have some guilt about that , however, I am sure Bob is looking down from Heaven saying that we should have done it sooner. I might not sleep good tonight, but knowing she will be safe and sound, I will sleep better starting tomorrow night.

    I just ask that you please remember us in your thoughts and prayers for a smooth transition and that this works out best for us.

    Thank you! Anita Paris

    Sent from my iPhone

    >

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    1. I will be thinking of you. You are making the right call. This is absolutely the right decision to keep your mother in law safe. It doesn’t sound like a realistic option for her to stay at home at this point.

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