Family is complicated. That might be the understatement of the century. But when you’re in a caregiving position for someone with an incurable condition, it becomes even more so. Memories can be complicated, too.
I remember the time my dad checked me out of school when I was in 4th grade — a complete surprise. Things were never perfect, and at times the relationship between us (the kids) and him could be rocky. But there were times also that his love and kindness were unparalleled.
At the time, I was really into World War II history — especially the planes. Between the movie The Memphis Belle and Lucasfilm's WWII flight simulator, Secret Weapons of the Luftwaffe, I was obsessed. And on this particular morning, my dad didn't say a word at school, muttering something about a doctor's appointment to the secretary in the front office.
We drove out to a local Atlanta airfield and we approached the tarmac. I was confused, but my dad just said he wanted to see something. As we walked down the sidewalk, I slowly made out the distinctive tail fin of an antique B-17, doubtless my favorite aircraft of the era. I was so captivated that I stumbled off the sidewalk as we approached the gate.
It was an amazing afternoon, and a time that my dad and I really connected. It was a static airshow, meaning that the planes didn’t fly, but I ended up enjoying that more. I got to crawl up inside of a B-17, sit in the pilot's seat, stand in the gunners' positions, and really witness history in the flesh.
Looking around at various vendors, there was something I saw that my nine year old self desperately wanted — a surplus Air Force OD Green flight suit that I could fit into. My family wasn’t poor, but disposable income was rare, and getting things was something that only happened on occasions like Christmas. Even so, my dad reached into his wallet without saying a word, smiled, and handed me the flight suit.
Just last week I was going through the closet in his guest room and I came upon this same flight suit. I can’t really bare to part with it yet, even though I know we have to downsize, because it’s one of those great memories that keeps me going through the tough times. Regardless of what is happening from day to day, I remember the person he was and I allow myself to grieve. Not a lot, just a little — it's a marathon, not a sprint.
Long before being diagnosed with dementia, my dad operated his own residential contracting company. For 25 years, he mastered the art of home-building. Eventually he bowed out and finished his professional career as a building inspector for the county we lived in. Though he eventually had to shutter the business, he succeeded in getting out before the housing market collapsed and he was eventually able to retire.
We thought my dad would ride out his retirement like his own parents did. But then, his symptoms got worse. With the other family members unable to do all that much from their own familial obligations, caregiving just sort of fell to me. A lot of the time, that’s just how it goes.
When you find yourself in the position of caregiver, it can seem like an impossible task to really move forward with someone like a family member. It's really tough. Sometimes the sacrifice doesn't always feel like it's worthwhile. And it will be relatively thankless, regardless of the well-wishes and gratitude verbalized by family and friends.
Often as the caregiver, you are the cushion between the person with the condition and your family. Likely those other family members won't see the anger, the pain, the hopelessness you feel as the best parts of your family member slowly fade away. It can be impossible to find the answer to how to continue. Sometimes, it's just about closing your eyes and moving forward.
There is no silver bullet. Every decision you make will carry with it a penalty. Some bit of freedom has to be restricted, the family member feels more encumbered, and you don't want to pile on trouble.
Some days will be good, but those days will likely diminish with time. Preparation is the key to keeping it together. But not just preparing for doctor's visits, physical therapy, and medications. It's also essential that you get yourself ready for what’s to come.
Although you can’t truly be ready for everything, you can at least have part of a plan together. And trust me, some is better than none.
Prepare yourself for the days when they can't quite remember your name or who you are. Prepare yourself for the moments when you're at a restaurant, and they lash out at the service staff — or worse, they lash out at you when you're trying to help. Prepare yourself to be the punching bag.
At some point, you're going to sit there and wonder why you're doing what you do, often when a solution isn't there and you know that they're only going to get worse. This, too, is when preparation really matters.
In these moments, prepare yourself to remember why you're there, doing the thankless work. Prepare yourself for a special relationship that no one else will ever experience. Prepare yourself to grow and develop, while accomplishing more than you ever believed was possible.
And prepare your support network. Whether it's other family members, spouses, friends, whatever — this is going to be important. Even a text, email, or phone call can make all the difference when you need it.
Be open and honest about how you're feeling, but also remember to give yourself a break. It's a tough job even for those who have years of professional experience. Taking care of yourself is essential, so don't be afraid to do what you need to do to relax, to take a break, and to ensure that you've got your strength as best as possible.
It's going to be a tough row to hoe. In truth, you can never be 100% fully prepared. But by taking the time to ensure that your needs are taken care of, your future self will thank you. And when you look back on the experience, you will know that you did everything you could and made the world better for a vulnerable person when they needed it most.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.