7 Secret Confessions of a Caregiver

It’s been two years since you last heard from us—of  course so much has happened. (I can write a follow up post about all of that if you would like after this) I am writing you today because I have been feeling the approach of March 19th more than usual this year[ .  Recently I have been reflecting on how I have been so lucky to come from a legion of caregivers.  This support system has given me the unique opportunity of learning from so many beautiful people around, ultimately teaching me what it means to be a good caregiver. What it means to sacrifice your time for parents, spouses, your children, or even close family members. This is rarely the easiest road to travel and I was inspired by a post on one of my brain injury support groups about the 7 secret confessions of the caregiver . I decided that to honor Dad’s four years of survival and our four years of this new life I would let you in on some of OUR caregiving secrets. I hope they can bring you a smile and give you a fresh look at the people in your life that are caregivers and the inspiration to honor their daily sacrifices.

This post is dedicated to Mom, Michael, Derry, Dad, Aunt Betty, Grandmom, Cyndy, Lauren and Mike, Joanie, Michelle, Noreen and Katie Rymal, Sy, Sammy,Kerry, and so many other beautiful people in my life who have inspired me to be a better caregiver.

The 7 Secret Confessions of the Caregiver

1. We rarely, if ever, feel like we are doing this the “right way”…

There are so many things in the past four years of my life pertaining to Dad’s recovery or just being a family in general that I wish I had done differently. I am acutely aware that being a caregiver to someone with brain injury does not come with a manual or any instructions at all but I spend A LOT of time thinking that there must be a way to do this “better”. We sometimes believe that we are missing some magic wand that would help us figure out the daily ups and downs that go along with being caregivers. I still beat myself up about little things. Like over Christmas, Mom, Dad, and I got tickets to see the new Hunger Games movie in IMAX. We were SO EXCITED.  First, I LOVE the Hunger Games, but also seeing movies with my Dad was our thing. Halfway through the movie, Dad started to feel sick and when Jennifer Lawrence pulled out the CGI bow and arrow we were done. I kicked myself the entire way home and still today keep thinking “How could I not have thought about motion sickness, what if he had started to have a seizure, why did we HAVE to see it in IMAX”? I am aware that none of that is my fault and that every one of the million decisions I’ve made over the past four years may not have been the right ones. I also know that all a caregiver can do is to try his or her best to ease up on the self-judgment.

 2. We didn’t sign up for this gig…

Now don’t get all fussy, this doesn’t mean we are not totally willing to be the best caregivers we can be. I’m not saying that I want to run away and put a bag over my head.  I have and will continue to take responsibility for my father’s health and the well-being of my family.  However I would be dishonest if I said it was easy and that we always like it. This life is alot of unexpected work for everyone involved including my Dad. We are all entitled to feel scared (I feel scared ), helpless, or totally and overwhelmingly sorry for ourselves.

I can even finally publicly admit that I still get jealous when I see my friends able to do things with their parents that are now impossible for me.  Although this may seem selfish, I think about my one true love Beyonce would say, “I’m just jealous, I’m just human, Don’t judge me.” These feelings are totally real and as much as I would love to say they never rear their ugly heads, they do. Please try and forgive us when we’re not our best selves as we try to forgive and understand that about each other.

 3. Brain injury is contagious…

I think this one mostly speaks for itself. In the original post the author writes: “It should be clearly stated that my brain also stopped working the day my husband’s was attacked with a baseball bat. Shock and stress do crazy things to one’s brain, including obliterating one’s memory. I may make plans and forget them or promise to do something and then fail to do it. It’s not that I’m irresponsible or that I don’t care. I’m just juggling a plate of such epic proportions that it’s a wonder I remember to get dressed in the morning. So, if you notice my acting flaky, it’s probably a sign I could use some extra help.” Help being the operative word. I find that many times I can be quick to jump down Derry’s throat when he forgets something or scoff at my mom when she doesn’t remember to drop something in the mail. I have to constantly reminding myself that the three people doing the constant everyday care for my dad are actually juggling a plate of epic proportions. Which leads to...

 4. Still, four years later, we don’t always know how to ask for help…

In this “new reality” as my mom phrased it so many years ago we are still living our lives day-by-day—many times minute-by-minute. Things change so quickly that we are rarely able to anticipate our own needs ahead of time. Going back to school has been really stressful for this reason most of all. I can never predict when something is going to happen academically and personally—and often times this is happening simultaneously.

The amount of care and help that we received in the months after Dad’s stroke was lifesaving. I really mean lifesaving, you all saved our lives. There is no way we would have gotten through that time without you all. Many times still people ask how they can help, but unfortunately we normally don’t know what we need until five minutes after we need it. I still feel guilty asking for help, so often I just do things myself. I can say that in the past three years the most valuable offers of help have been that free up time, my most valuable resource. I call these “no strings attached” offers. They don’t require me to do extra coordinating or to go out of my way. These offers are wonderfully selfless, which, in themselves, are a gift to the guilt-ridden caregiver. Thank you for all that you have done and continue to do to make our lives a little easier.

 5. Self-Care feels like the hardest thing of all

In January my mom and I got haircuts together. We spent the afternoon at the salon laughing and having what would seem like to the outsider was a regular mother-daughter day. It wasn’t. It was the first time I had cut my hair in almost a year and it had been two years for my mom. I can say that without batting an eye because this really is our new normal. Prioritizing things like doctor’s appointments over haircuts is commonplace for caregivers. It’s not because we don’t want selfcare but the wellbeing of Dad is paramount, and a haircut is the last thing on our mind at the end of the day.  Foregoing self-care can be the catalyst for a whole bunch of other problems, especially when prioritizing our own health is not always easy to give ourselves permission to do. It can also be hard to say no to invitations and take quiet time away from the world when you just want to be able to give back to the wonderful people around you. Learning how to be caregivers to ourselves is something that we are still working on every day.

 6. Brain Injury doesn’t go away

Believe me, I know that you are probably tired of hearing our brain injury problems. I wish that I could say that those days are long in the past at this point four years later. But they’re not. Even though Dad made a truly miraculous recovery there are still major deficits, constant health problems, psychological issues, and incredibly real daily risks and fears. Our life will never go back to the way that it was on March 19, 2010 and neither will we. I hope you can learn to love us for the new people we have become and appreciate the different things we bring to our relationships with you. But I really do understand if you miss the old us. We miss us too.

 7. Learning to stay positive is a marathon

Since the stroke we feel everything intensely, very intensely. We appreciate joy with fresh eyes and open hearts and really do try to see the roses more than we did before. Two years ago, Briegh (the German Shepard we got in the days after the stroke) got a little brother German Shepard. Briegh had brought us joy and comfort in a time of so much turmoil and Tyson was all the same things and so much more. Together, Tyson and Briegh gave us some of first real gut laughs since the stroke. They were attached at the hip and absolute clowns. Tyson protected our home and was my mom’s baby. He actually spooned Mom every night and brought her so much love after tremendous loss. On Sunday of this past week, Tyson unexpectedly became very ill and passed away. We were so lucky to have had him for those two years, but you know what? This really freaking sucks. We have all learned how to deal with blow after blow and I am incredibly self-aware that the personal strength level of my family is pretty damn high. This doesn’t change the fact that losses of any size feel so much bigger since the stroke and learning how to make the best of it doesn’t feel fair. Our lives are so different now and sometimes I would give anything for break from things like losing Tyson.

 The original poster inspired me with this last bit and it has really been a source of inspiration over these past few days as we have been approaching the anniversary of that awful day:

“It’s easy for caregivers to bottle up their frustrations. With such a demanding role to fill, we are apt to put our own needs last. And as much as we sometimes wish others could read our minds or occasionally walk in our shoes and feel these demands themselves, our only real option is to stay honest with the people in our lives. It’s my hope that in sharing our secret caregiver confessions, we can strengthen the lines of communication, benefiting everyone affected by brain injury.”

 Thank you for listening and for being on this journey with us for the last four years. When I asked Dad what I should write to you all from him he said “Still Kicking”.  And I think that pretty much sums it up, the Hinchey’s are still kicking no matter what.