The Unique Challenges for Younger Caregivers

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Photo caption: The author with her mother.

By Stephanie Kanowitz

“This must be your grandmother.” I get that a lot. My mom was 42 when she had me, and although she avoided wrinkles until late in life and colored her gray hair a medium ash brown, she always seemed a little old for her age.

Now that my mom lives in the memory care unit of an assisted living facility, sits in a wheelchair and wears her hair white, our 42-year age gap is even more pronounced. Most people at the facility – residents and workers alike – are amazed when I say, “Actually, I’m her daughter.”

It’s never really bothered me that people think my mom is my grandma, but lately I find it adds to the isolation that comes from caring for a parent with dementia. At 39, I’m at least a decade younger than the other residents’ loved ones. Most of them barely give me a passing glance, likely assuming I’m a dutiful granddaughter, not a devoted daughter. Or it could be that they want to focus solely on visiting their loved one and getting the heck out. After all, the unit can be a depressing place.

I get that. Which is why I was hoping to find more of a community among other residents’ family members. I’m an only child, and my dad died when I was 14. My mom’s sister and half-brother have also passed away. I’m all she has and every decision falls to me. None of my friends are dealing with parents who have dementia, and although they and my family are an amazing support group, there’s something to be said for commiserating with someone who’s in the same boat as you.

Before my mom was diagnosed with dementia about five years ago – weeks after my son was born – I didn’t know much about the disease other than it made people forgetful. I didn’t understand that it also made them confused, belligerent, illogical and unreasonable. My mom was descending into her own world, a place where time froze in 2012. Anything after that didn’t stick with her.

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Photo caption: The author’s son and mother.

My coping mechanism was anger. I would yell at her for spelling my son’s name wrong or asking me the same questions over and over again. Then she stopped mentioning what Netflix movies she was watching, and I discovered she hadn’t been paying the bill – or any bill. I couldn’t reach her one day because her phone had been turned off. My husband and I took control of her finances. Fiercely independent, she was furious with us, until she forgot that we had done it. I didn’t know it then, but those were the easy times.

I spent several years feeling resentful. After all, how dare she develop dementia when I had two small children to care for, a freelance job to cultivate, my own life to lead? Throughout my teen years, my mom said that she never wanted to be a burden on me. But it felt like that’s exactly what she was doing.

Of course, my logical brain knew she wasn’t doing it on purpose and that I was being ridiculous. But my emotional brain was stronger.

All of this is to say – again — that dementia is isolating, not just to the patients who can get trapped in their own world, but to the caregivers who try to navigate that world. In fact, it can be harder on caregivers than patients, because even though sufferers have dark moments, they soon forget them. Caregivers don’t.

I remember every detail, like how her face twists in anger as she yells threats and obscenities at the facility’s staff trying to give her a bed bath because she can’t shower unassisted anymore – not that she knows this. To her, getting clean is a violation and it’s a fresh one every time.

A year after moving my mom into the memory care unit, I have come to realize that I was hoping a byproduct of putting her there would be gaining a community of understanding for me. I’d finally be around people who get it, who live it.

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Photo caption: The author with her daughter and mother.

I didn’t find it in fellow caregivers, but I found it in the care managers who work in the unit. They get it, live it and, what’s more, are trained to deal with it – to not feel resentment or take things personally. I have learned so much by watching and talking with them. For instance, there’s the time I walked in to hear my mom discussing ideas for Hanukkah gifts for her mother with a care manager.

“How about pearls?” the care manager asked her.

“Oh, maybe pearl earrings to go with the pearl necklace I gave her,” Mom said. Seeing me walk in, she added, “Do you see her wear those pearls, though?”

I froze, internally battling back the words that sprang to mind: “I’ve never met your mom, Mom. She died long before I was born.”

Something about the way the care manager looked at me helped me push that away, though, and instead I said, “Yes, Mom. She wears them all the time. I think she would love matching earrings.”

In that instant, I learned to go with the flow and in so doing, I am able to join my mom in her world, not resent her for having it.

I’ve also learned from care managers that feeling guilty, angry and resentment is OK. I visit my mom every day, but sometimes it feels like too much. Sometimes it’s just too hard to see her like this or to see the other residents and know that they once were heads of businesses and households, not just men and women in their 80s and 90s reduced to mental children looking for their parents and a way home. As I fretted one day about not being able to make it to the care facility the next day, a care manager stopped me and said, “She’s OK here. We look out for her, and you need to make sure you look out for yourself, too. If you need a day off, don’t beat yourself up about it. Your mom will be fine. We’ve got this.” It was so eye-opening that I hugged her. In five years, no one had told me that or shouldered the responsibility in quite that way.

In finding a place for my mom, I found one for me, too.

3 thoughts on “The Unique Challenges for Younger Caregivers

  1. Stephanie, I was very touched by your story, and your description of how isolating this disease can be. My mom recently passed away from Alzheimer’s. I have 2 brothers, but I was the one who saw her every week. They did not. They did what they could, which was not much. And even though my husband and kids were there and very supportive, it was lonely for me. Anyway, what I want to say is, I would be so happy to talk to you about what you are going through, if you ever want to.

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  2. I just cried through every word of this. You are not alone… and your story is achingly similar to mine. There is a sisterhood of us only-children in our 30’s (and, for me, early 40’s) caring for someone with dementia. My story is full of tears, too. In an effort to figure out what was wrong with my mother, her doctors committed her to a psychiatric unit near her home – on the other side of the country from me. I was 2 weeks away from giving birth. My father has Alzheimer’s and was left alone during this time. “Your mother suffers some cognitive impairment and should be released to an assisted living facility” were the words her doctor told me over the phone upon her discharge. I heard them when my baby was 3 weeks old. It is so very hard to be the ONLY family. She lives with me now and my father will soon be joining us. I understand your phrase, “confused, belligerent, illogical and unreasonable” better and better, every day. I have no idea how we will pay for a memory unit. I cannot imagine sending her there even if we could. Her paranoia and delusions are the stuff of horror films. Yet, I cannot imagine her (or Dad!) staying with us if she gets worse. All of this, every step, is hard and heartbreaking. But, take comfort in knowing you are not alone in this.

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  3. Stephanie: Your story is a reminder of when my Dad’s health declined and he was placed in a memory clinic with dementia, along with a number of other health problems. I, too, was a young caregiver as my Mom had me at 42. I was around 39 when my Dad’s health began to decline. For the next 18 to 24 months, I experienced first-hand what it was like to watch a parent’s mind and body erode while myself going through a plethora of emotions. How to survive? How to keep going? Those were questions I asked myself often during that period. I had never experienced something like this before. And much like yourself, it was very difficult balancing a professional life, family and to be with my Dad and support my Mom, as I was an only child. I worked as an editor for a newspaper and the combination of the two responsibilities compounded my stress level to the point where I needed to take a leave of absence for a couple of weeks for my own health. As you said in your article, there were so many emotions that it’s difficult to balance them. I, too, sat in the room one day and looked around at all of the residents and thought to myself, “These were people who were contributing members of society and their families. How could something like this happen? Reduced to having no quality of life.” And even though that time has passed, I pray deeply for all of those spouses/children who face this insurmountable challenge. As the previous person wrote, you are not alone in this. Lifting prayers to you and your family for strength moving forward. God’s peace.

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