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Family Caregiver Perspective: Caregiving Has Side Effects

GUEST BLOGGER: Kyle Mealy is The Right Relief Treasurer and my husband. He has a unique perspective on Caregiving as he watched his father be a full time caregiver for many years.

It wasn’t until Hollie started this journey called The Right Relief Inc. that I began to fully realize the emotional and physical toll that caregiving extracts

Having been exposed to more talk about Caregivers, their experiences, and their stories than most people, I’ve seen some distinct symptoms pop up. These Symptoms are, unfortunately, unhealthy. I’ve come to think of Caregiving as a separate medical diagnosis. And with that diagnosis there are 4 symptoms that I’ve come to recognize.

Symptom #1: Caregiving Has Side Effects

The first of these Symptoms I noticed was Caregiving has side effects. For cancer patients, chemotherapy and radiation can be life-saving treatments. As soon as those options are on the table, we know that the side effects of those treatments frankly suck. It’s a choice we make, and in terms of survival it’s almost always a worthwhile one. Cancer can and will kill you; the side effects of the treatments almost certainly won’t. Caregiving’s side effects are exhaustion, stress, a loss of personal identity (who we are becomes lost), and more. Similar to cancer treatments, Caregivers sign up for this emotional and physical toll over and over again.

Symptom #2: Caregivers Fail to Realize They’re Caregivers

The second symptom of Caregiving is much more nefarious, and I’ve already used cancer as a metaphor so hold on. The reason this second symptom is so much worse is because so many Caregivers are ignorant that:

  1. They are Caregivers

  2. They aren’t experiencing these side effects (or will)

  3. There’s ways to get relief (without feeling like you’re getting special treatment)

What do you mean they are "ignorant" that they are in fact Caregivers?! Becoming a Caregiver happens so swiftly that we sometimes swap some of our identity for that of a Caregiver in seconds and forget nearly everything else.

One Moment You’re a Dumb College Kid…the next a Caregiver

I’ll never forget the phone call from my Father, walking back to my apartment during college. It was Wednesday morning and I just finished handing in my last assignment before Thanksgiving the next day. I was looking forward to a very slow moving afternoon of video games before I took my time driving down to Sun Prairie. My Dad, who doesn’t panic easily, was acting weird. Basically demanding I get my butt home right away. Of all people he knew that I move at my own pace, and hearing this unusual urgency, I packed up quickly and got on the road.

As soon as I arrived, his urgency moved to near panic, “Go talk to your Mother”. Looking back I know now that my father, a data quality guru, didn’t want to bias the data of my own assessment, but internally, I was grumbling, “WTF is the deal man?”. It took about 14 seconds with my Mother to realize something was very, very wrong.

  • My annoyance disappeared.

  • The excitement of Thanksgiving disappeared

  • Whatever conversations or plans I had made with friends disappeared

  • The fatigue from going out the previous night disappeared

  • Every priority I had changed

My understanding came full circle. I jumped to the same level of urgency and what I now recognized in my Father as deep concern. And it happened instantly. Suddenly I was a full-time Caregiver.

My Mother has never been healthy or close to it, but it’d be easy to say she’s been very sick since the mid-late 90s. So unusual from her was usual. But what I witnessed that Wednesday before Thanksgiving was straight out of a movie. She was both coherent and incoherent at the same time. And Dad and I went into diagnostic mode. She was talking, breathing, and watching TV. So it wasn’t something to call 911 about. But here we were trying to convince her that she didn’t have to prick all 5 of her fingers to check her blood sugar (our first concern). She understood the concept of checking her blood sugar, she had pricked her ONE finger thousands of times, but she couldn’t be reasoned with. Her blood sugar was fine.

She said she was hungry, and I ran down the stairs and got her some Jell-O and a spoon. That spoon might as well have been an alien artifact, she had no idea what to do with it. First time she had ever seen such a strange shiny object. I felt like Scuttle trying to describe a Dinglehopper to the Little Mermaid.

Now Dad and I are starting to panic, our next intuition is stroke. But that usually means slurring and weakness. She wasn’t slurring or weak on one side. We had to physically stop her from pricking all 10 of her own fingers. We don’t think it’s a stroke. Now, remember when I said Caregivers forget everything? Yes we were trying to be WebMDs, and yes we should have just called an ambulance. I didn’t say that caregivers always make sense or that caregivers always act rationally. They trade some of their own reasoning and logic to fully provide for someone else’s needs. It’s just one of those side effects.

Somehow, we got her to the car. To this day I don’t know how we did it. I know we made some decisions that it was going to be safer for us to do it without the ambulance because we could minimize the risk of overwhelming her. But I just remember both of us pouring with sweat having half carried her to the car, and trying to help her remember what her knee was so she could bend it so we could close the car door.

When we get to the hospital there’s a flurry of activity. And my mother’s condition worsened. She was more confused and they didn’t yet know why. It had been nearly 12 hours since we got there. Neither my Father or I had eaten. I think around midnight we finally convinced her that we would be back in the morning, and that the nurses would take care of her. I don’t remember getting home that night. I don’t remember unpacking my car. I don’t remember eating. I remember that we both got multiple confused calls from her over night. I remember getting back to the hospital before visiting hours and charming multiple layers of nurses and hospital staff to get ourselves back to her room. Frankly we later realized the nurses needed a break from her too.

What I don’t remember when I got to her room on day 2 was that it’s Thanksgiving. What I don’t remember is that at 9am we are usually watching the parade and starting preparations for an epic Thanksgiving feast. For lunch (which Dad and I skipped as well), we usually have snacks and watch football. Thanksgiving might as well be one of those German words that don’t directly translate into English. And I don’t care that it’s Thanksgiving. I don’t even know to miss it. My mom is so unsettled, that I don't know if we ever turned the TV in the room on.

We come to discover that basically she had built up a high level of toxicity to a medication she had been taking. And she wasn’t in good enough condition to do much other than try to let it slowly work out of her system.

That night, Thanksgiving night, my Father and I went down to the cafeteria for a quick bite to eat (I think even nurses said we could go) or she fell asleep. I can’t remember, other than being tired. And there happened to be a “thanksgiving sandwich” on the menu. The first time I really realized it was Thanksgiving. It was a hospital cafeteria turkey sandwich, barely edible, that my Father and I ate in silence. Gearing up for another couple of hours of battle to keep her calm.

The total event lasted almost two weeks. And I just remember being tired. Once she was fairly stable, I went back to school. But I was honestly disconnected from my reality that was school, and partially connected to the hospital, my mother and my father. It was exhausting. I still can feel that tension and stress when I think of that time.

There was no Right Relief available to my Father and I. It was just us. And we managed the best we could. We didn’t even know how to ask for help or thought that we needed “relief”.

Symptom #3 - It’s Hard to Recognize It When You’re In It

Most Caregivers aren’t able to create enough space to know they are in need of relief until long after the event. I think that some of Hollie’s incredible work is to elevate the visibility of caregiving so that maybe a Caregiver going through what my Dad and I went through would have the awareness of an outlet like The Right Relief.

Symptom #4 - The Right Relief isn’t “Special” Treatment. It’s just Treatment

Most Caregivers don’t think they deserve any kind of reward like a Right Relief meal or a Right Relief “dose”. That’s the WRONG thinking about The Right Relief. That’s not what a meal or a dose is about.

  • A meal and a dose isn’t a reward (but it sure is deserved)

  • It’s not something for going “above and beyond” as a caregiver.

  • We know you just did what needed to be done, and we know you don’t think you deserve special treatment.

  • We know it’s not about you. We know you put others before yourself like any other human would.

The Right Relief is treatment. It’s medicine. It’s a necessary part of your healthcare when you’ve been exposed to Caregiving.

Yes, I wrote it like some contagious disease. But to me it is a form of a disease - certainly we don’t think of Caregivers as diseased. But I certainly think of them as impacted, and not fully healthy. One can’t be fully healthy when acting as a Caregiver.

Chronic Caregiving: Long Haul Service as the Primary Caregiver & Impact of a Dose of The Right Relief

Caregiving can be acute (short term) or chronic. And the Right Relief is a dose to help alleviate the side effects (like Tylenol for a headache) you may be experiencing (or are currently unaware of).

I’ve described the acute, now the chronic. My Father was primary Caregiver to my Mother for nearly 30 years. It didn’t happen like a light switch; some one off event. It slowly crept up over time. And anyone who has been the primary caregiver to an ailing parent or grandparent knows that it’s a very painful situation. The person you’re providing care for slowly declines, and the caregiver's reserves of energy decline as well. It’s unhealthy; it causes pain and decay. It causes the loss of identity and opportunity. It’s like a prison.

Again, I’m aware that we choose to provide care of others. I’m aware that it’s the best of humanity to take care of those around us. But we can’t ignore that it also causes emotional and physical damage to give so much of ourselves.

Like the yard of a house that once was beautifully maintained, but then year by year is neglected a bit more. The bushes are so shaggy it’s hard to imagine them even being planted with intention and desire to make the space more beautiful. Concrete pathways are now buckled, cracked, and are slowly being devoured by the grass. It doesn’t happen overnight, it’s an accumulation of focus and energy being deployed elsewhere.

Without knowing it, long before I met Hollie, I would once a year set up for my Dad to have a night off from Caregiving. We would go to a Brewers game. I’d get us really good seats. He wouldn’t have to worry about cooking. He wouldn’t have to worry about my Mother’s dinner (once Hollie and I started dating she even went there on Brewer game night to keep her company). And for 3 or 4 hours he could relax; where he was the only being provided for. Looking back I wish I had done more of that for him.

But again, you don’t realize how important those moments are in the midst of the day to day. You don’t realize how much relief from Caregiving side effects a “dose” could help. It’s what currently, RIGHT NOW, The Right Relief has Brewer Tickets as a dose of Relief. I was providing it long before there was a name for it. The tickets are FREE. They are just to create a moment like I did. Don't wait! The season is almost over and the number of home game lefts is rapidly declining!

You Made It! Now It’s Up To You

If you made it this far…I beg you to have a conversation with yourself (or with someone providing care) and GET RELIEF.

Frankly, people are better at being caregivers when they are healthy. You wouldn’t think twice about taking Tylenol for a headache; getting a “dose” of The Right Relief must be treated the same way. It’s not special treatment, it’s just treatment for the ails of Caregiving.

Please challenge those folks around you (and yourself) who are providing care. Have this conversation with them like the doctor who reminds me to take my blood pressure medicine. It’s about the long-term. It’s about healthy habits.

Finally, If you’re providing acute or chronic Caregiving, and the roles were reversed and you were receiving the Care…wouldn’t you BEG/HOPE your caregiver would get relief too? Wouldn’t you be so glad that they could be provided for like you provide for them? That you feel refreshed and cared for too?

To learn more about our guest blogger, visit his website HERE.

*Fun fact* The very first day Hollie ever met Kyle's Dad, Rick, was April 21, 2012 and it happened to be the day of the annual Brewer game. They caught a Ryan Braun foul ball that day!

3 generations of Mealy "Men"

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