Tonight I tweeted, “Will things ever be normal again?” A friend responded, “Define normal.”
I told him it had to do with my father being in the hospital (Yeah, he’s back after his blood pressure dipped and he developed a fever) and that, for the past month, my only two destinations have been work and nursing home and/or hospital.
But he’s right making me consider a definition. What is a normal life, anyway?
I can’t say my life was super ideal pre-my dad’s pretty debilitating fall and hip trauma, but I wasn’t mired in constant worry about them unless I’m completely immersed in my work. Today, even when I’m at work, they’re all I think about.
My father has had Parkinson’s for a little more than 18 years, and my mother is his primary caretaker, despite working part-time. I always went to their house to visit, but in 2014, as his Parkinson’s progressed a bit deeper, I went home nearly weekend to give her some relief.
But this is different. Going from work to hospital till nearly midnight, and back home (with mom; she’s asked me to stay with her until my father comes home), and back to work again, is EXHAUSTING. On top of that, not staying at my own apartment means a half hour ride to my place to pick up clothes once or twice a week. Then there is the mental party, constant worrying, even though he’s in a facility crawling with nurses. It’s tough.
So, no I can’t define normal. But I do know it’s not this.
Factor in my father’s inability to speak clearly (something that started about eight years ago, and has gotten worse since) and mild dementia, and I’m left mentally and physically drained.
I’ve written this in the past: None of this is about me. It’s incredibly tough on the entire family. But this is my dad. I feel like I have to be there for as many hours as possible every day. I’m also there to offer comfort to my mom, who I can tell, is scared about this all.
As abnormal as this may seem, I’m glad I’m here with her, and in frequent touch with my brothers. If I could go back time, I’d prevent my father from falling, but this closeness that we’re feeling as a result of this sad trauma is priceless.
Still, I wonder: will I ever have fun again? Will I ever just aimlessly walk around after work and dip into a store, or into a place for a glass of wine? It doesn’t seem that way at all.
When I am in the office, I feel distracted by wondering how my father and mother are doing, phone calls to and from doctors, insurance companies, social workers, and attorneys, and the dozens of relatives calling, texting, and Facebook messaging me from overseas to check on my dad.
When I am working from the hospital, and now, nursing home/rehab facility, I am often interrupted by speaking with my mother, trying to figure out what my father wants/needs (his difficulty speaking due to Parkinson’s was made worse by his hip trauma), and calling on nurses and nurses aides for help.
This is tough. My brain feels like scrambled eggs.
Still, nothing compared to what my parents are experiencing. I feel very faint today, and almost guilty for admitting to it, because sitting around worrying, or pacing while making phone calls, doesn’t exactly add up to rigorous exercise that would warrant being dizzy.
Dr. Atul Gawande just wanted to give a patient some hope. But he ended up saying something he would regret.
In FRONTLINE’s new film Being Mortal, Gawande remembers treating Sara Monopoli, a woman who was diagnosed with Stage IV lung cancer at 34, in the ninth month of her pregnancy. After giving birth to a healthy baby girl, Monopoli was diagnosed with a second disease: thyroid cancer.
In the film, Gawande tells Sara’s husband, Rich, that he knew she would almost certainly die of lung cancer, but he still gave the family hope that an experimental treatment might help treat both cancers. Rich surmises his family’s hope must have been infectious.
“You had joined us,” he tells Gawande. “We had our sunny disposition, hoping for the best.”
“The reason I regret it is because I knew it was a complete lie,” Gawande replies. “I just was wanting something positive to say.”
The conversation captures the dilemma suffered by doctors, families and patients with a terminal illness. The patient faces a painful decision: Whether to keep fighting a disease through every last treatment, trying to live as long as possible, no matter how painfully, or to live out the final days as well as possible.
Earlier this evening, my very tired mom and I walked through the hallways of Hackensack Medical Center so we could meet my dad, who was being transported by paramedics, to a long term rehab facility in Fair Lawn, NJ: Maple Glen Center, a Genesis Healthcare facility.
On our way to the elevator, we encountered a super cute older gentleman who looked a lot like Fred Mertz (a character from 1950s sitcom, ‘I Love Lucy.’) He asked us who our patient was. I explained. He asked what rehab center my dad was being moved to, because his mother was in the hospital, and the facility she was in previous to her hospital admission, was “not so good.” Turns out it Care One Teaneck, which is a sister facility to Care One Wellington, where my dad was a patient in for about two and a half days before his blood pressure dropped due to dehydration and he was rushed back to the hospital. (Turns out the same happened with the cute little old man’s mom.)
This is our new reality.
This is what we have to deal with from now until my dad is well enough to come home, or goes to a place that is not home. People who have gone through the nursing home/rehab facility experience advise us to be there “at all times,” a near impossibility for my immediate family; we all work. (Today I filled out paperwork for my mother to take a leave of absence from her main part-time job, but it’s important for one of us kids to be by her side to provide her some respite.)
It’s really hard to swallow, but I have to be the stronger person. I have brothers, but I can see how this is harder for them. Two sons that always saw our dad as an active, strong, and funny guy, and how he’s a shell of the person he once was. I’m daddy’s little girl. I tell it like it is. I am there and am handling more of the being there, and paperwork of healthcare, because I must.
I cannot seem to form tears about my dad’s condition. I hold it in, save for every fourth day, when I can no longer hold it and something makes me angry to set me off. Yesterday, it was an argument with my brother about giving my aunt a ride somewhere.
I aspire to be like my mother.
I’ve always been used to her being a super strong woman who doesn’t scare easy. When I was 19, I feel asleep while I was driving and got into a terrible accident, dislocating my hip, breaking my wrist, cutting my forehead pretty deeply, and bruising my knees. I remember my dad crying in the intensive care unit, setting off my own waterworks, and my mom telling him to stop, that I’d be fine. She then grabbed by hand, gripped it, and told me to stop crying; that I’d be back to normal in no time. She was right. I was walking in less than eight weeks.
I really wish I could revert back to age 19, and my mom can once again be that warrior woman who, to this day, at age 69, works a couple of part-time jobs. It’s so hard to have a dad who looks scared and confused because we leave him at night, and a mom who is teary about her partner of 45 years (this Feb. 22!) not sleep with her at night.
It’s obvious I need to be that warrior woman. But it is tough. I may have a white collar job, and a master’s degree, but I feel I’ll never be their caliber of tough.