“Maybe I can still go and get my Doctorate in History someday.”
“Not a bad goal to reach for Dad. If you did, what would you write your thesis on?”
“I’d work to disprove the common belief that –(Civil War Commander)– was responsible for the –(Civil War battle loss)— at ———-. I’ve always felt that they got it wrong.”
“Sounds like that would be a thesis worth reading. Make sure I get a copy…. FYI: You missed the top of your left shoulder and your left thigh. Grab that loofa and get scrubbing.”
Three to four showers a week leave for lots of awkward silence to fill with unrelated conversation. I’m a master at small talk – I meet strangers daily at work whom I massage and see partially clothed before they’ve even decided if I’m legit-looking enough to be capable of healing them. But, shower time with Dad left me struggling for topics and with a sinking feeling in my stomach. (And no – it wasn’t just the parental nudity). While consciously I recognized the need to help Dad shower (his mobility was so limited that he and Mom might get hurt if I didn’t do it) and was happy to be there to help, there was the feeling deep down that this was one of those life changing moments that you can’t take back. Even more paralyzing was knowing that, despite his keeping the feelings to himself, every second in that shower relying on my help was crushing for him (and Mom) too.
Being a caregiver is unimaginably tough. Being a caregiver for a parent is beyond terrifying. It’s a moment most of us face in our lifetime, yet none of us is ever ready for. The role reversal for both parties causes high levels of emotional, physical and social stress.
When I voluntarily took on the role of caregiver for Dad, it was instinctual. I knew that caring for my parents when they got older and needed it was something that I wanted to do. Family has always taken center stage for me. My husband felt the same and we had talked about building our life in such a way that we could provide that support for both sets of parents should the need arise in the future.
“Life is what happens to you while you’re busy making other plans.”
What I didn’t see coming was that I’d have to step up to that role at 32 years old; Less than 3 months after I got married. Less than one month after I bought my first house. And at least a year before I even planned on having my own children. The timeline was all wrong.
I wasn’t ready.
In some moments, when Dad was having a particularly bad day, the negative emotions pushed through. This has to be mistake – this can’t actually be happening. Dad is my safety net. He gives me advice over the phone when I’m overwhelmed. He goes to the Maryland games with me and shares in my successes. In the future he’s going to teach my kids to play baseball and cheer on the Terps with us. He’s way too young to have a stroke…. And wait- aren’t I too young to have an aging and disabled parent? I was devastated, overwhelmed, sad and angry. I saw friends having kids, getting married, vacationing and visiting their able-bodied parents (who were exactly what mine were just last fall). These peers were doing the “fun” things that people my age were supposed to do. In stark contrast, I was giving up all I could in my life (hobbies, friends, part-time jobs) to be available to help. I felt cheated. What was supposed to be the one happiest years of my life felt like it had been stolen from me and I was bitter, jealous and crushed. My husband also factored highly into my despair – he’d been an amazing supporter in all this. He gave it all up along with me – just 2 and a half months after we got married – and he was living the same nightmare too. The guilt was desolating.
In other moments, when Dad had a small victory or I saw “him” in his eyes, my fight returned and I felt eager to continue and excited for the future. While the task (rehabbing Dad to independent function) seemed almost impossible, I was the daughter best suited for the challenge. I’m a Physical Therapist. I’m determined, hard-working and driven. I have immense inner strength and the idea of “giving up” has never made sense to me. Beyond me, my family was ready to fight too. My husband, a personal trainer and coach with a strong knowledge of human movement and performance, was working with Dad when I couldn’t. My Mom, a teacher in NJ, was willing to let Dad stay at my house knowing that Maryland was the better location for his recovery. She drove back and forth weekly, spent every weekend and many weekdays (taking unpaid FMLA) here and put her life on hold. My brother came down during the first few months to cover when Mom couldn’t and learned some physical therapy techniques to assist Dad in his recovery. Family members called, texted and visited to show support. Dad had the best chance of anyone to make a miraculous recovery. If anyone ever had a better dream team for stroke recovery – I’d like to meet them!
So – what’s the point of my ramblings? While there’s lots to take from this experience so far, the one certainty I’ve learned is:
Care giving is tough.
There is no manual and you fail as often as you succeed. You lose yourself in the day to day and the relationship you had (whether it be your parent, spouse or adult-child) permanently changes. You go from the highest highs to the lowest lows in the blink of an eye. Friends disappear, family falters, empathy and compassion at your work ceases. While you’re never alone, (24-7 support takes all your time) you feel isolated and disconnected. You act insane and feel terrible about it (yup – I’ve yelled at my disabled Dad more than I care to share). You grieve your old life. You resent those who aren’t dealing with what you are. You pray, bargain and beg for some miracle. You lose yourself. You press on.
And it’s ok.
Sometimes there’s just not enough small talk for shower time.