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5 Tips for Caring for Dementia Caregivers

An Inside Guide to Actively Loving

By Jordie DiFernandoPublished 5 years ago 5 min read
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Image courtesy of Photography by Hannah Grace | Image depicts caregiver dancing with her crying husband, diagnosed with dementia, as they dance at their 35th anniversary celebration.

My dad was 53 when we first started noticing that things weren't normal anymore. Alzheimer's and other dementia diseases had already been a part of our lives with three of my grandparents, and I truly never thought it would be a part of our story again; certainly not the eventual diagnosis of my young daddy, and another life-sentence for my darling mama.

You see, my mama took care of her own mother through a long, tough battle with vascular dementia. For well over ten years, my mama was everything her mother needed, even when her mother forgot who she was, yelled at her, hit her, and couldn't communicate. Thanks to the selflessness of my own mother, her mother was able to live and die in her own home. My grandma passed away peacefully in her sleep just after New Year's Day in 2017. Two days later, with his own diagnosis of dementia and an inability to do his job any longer, my father had to retire early after 38 years of highly specialized work.

My mama, my siblings, and I work hard to be a light for him and each other. Anyone who has a loved one with a disease knows how taxing it is to just be present sometimes. In the years we've been on this journey, I've learned a ton about the things that are helpful for someone walking a similar road, and a whole lot about the things that aren't helpful. Here's a list of five practical ways you can help to care for the caregivers you know —it may be just the breath of life we need.

1. Understand that we're grieving.

People who are fighting through dementia diagnoses are in grief. For many families like mine, we're grieving the loss of things that will never be as they once were, the loss of things that will never be possible, and the loss of different functions and memories every single day. With each passing day, we're grieving the pieces of my dad that die due to his dementia. Additionally, we're grieving that he doesn't fully understand the reality of what he's losing. All of those things, individually, cause tension and devastation. When you're talking to us about our loved one, understand that we're kind of like grieving zombies. Nearly everything we do is for my dad; ensuring that he feels like his life has purpose, even though he constantly believes it does not. We're sleep deprived, emotionally, physically, and mentally exhausted, and doing the best we can. Meanwhile, he looks healthy and fit on the outside; cheerful and well-composed when with people outside of our immediate family. We understand that it's hard for you to see the weight of our grief when all you see is the person who still goes for walks and laughs, but the first step in helping us is understanding that what you see is not our reality.

2. Show up.

This seems a bit blunt, but I've found that what helps me through this time the most is people who show up for me. I'm not always going to ask for help [read: probably won't ask for help] because I don't want to burden you. Also, I don't know what to ask for. Pragmatically speaking, there's absolutely nothing you can do that will make this better for my dad. There are things you could do to make my load lighter, but I feel bad asking for that. Come over and have coffee with a caregiver, offer to bring a meal over one night, do our dishes, vacuum our floors, or fold a load of laundry. These are simple, everyday tasks that often get overlooked in the craze of caring for another person, but they are constant reminders that we aren't doing enough. Also, we're probably too embarrassed to ask for the help, so we won't.

3. Don't take it personally.

Sometimes we're not going to want to talk. Sometimes we don't have the energy to relive our reality in conversation with you. It's not because we don't love you; it's not because we aren't grateful for you. It's because we are exhausted; we're mourning, and we know that there are a thousand other things that need doing. Please continue to call or text us, or even see if we're up for a visit. Even if we say no. That's hugely important, because one day we will say yes; we'll be ready, and when we're ready—we're really going to need you.

4. Don't blame yourself for our reactions.

One thing I've noticed about myself since my dad's diagnosis is that it doesn't take much to get me upset. I can be going through a busy day, and a friend will say something to me that will just ruin my mood for the day. It's not you, it's me. There's always so much on the mind of a caregiver. Please forgive us, and please don't stop talking to us. Our short fuses are not a reflection of you, but of our everyday struggle to be the best we can be for our suffering loved ones.

5. Don't ask if we're sure they're sick.

Whenever I bring this up to people, they think I'm joking. "Do people actually ask if your dad really has a disease? As if you'd make that up!" Welcome to reality. I've been asked no less than ten times in the last six months if I'm sure this is what is really going on, or if there's something more we could've done to see what's wrong. Sometimes this comes from our own family members! It's kind of outrageous. However much good intention is behind your words, all I can hear is that I didn't fight hard enough for my dad. It invalidates every long night, every thousandth time I've had to explain something to him, or the time I had to tell him it wasn't safe for him to drive anymore. It invalidates every lengthy and disappointing doctors appointment I've been to with him. Most of all, it invalidates my place as his daughter, one of his caregivers, and someone who would literally die for him. Don't ever question what we've done. We have done everything in our power to make sure that our loved one was properly diagnosed, and we are currently doing everything to ensure that our loved one has the most dignified and joyful life.

The caregivers in your life have a lot going on. They need your support more than anything else. Take these five steps, and put them to good use. Caregivers need to be cared for, too. It's the only way we can survive.

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About the Creator

Jordie DiFernando

I'm a musician, a writer, and an empath. I love to love, I love expressing my thoughts through writing, and I also love reading what others have to say. Thanks for reading!

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