Remembering dad, two years later & every day

On August 8, 2018 By scenebyginaIn family, People, reflectionLeave a comment

Today it was the most adorable older man pushing a walker along with his yellow labrador while I was running in Central Park. It wasn’t the dog (my dad wasn’t the biggest fans of the four-legged), but the use of the walker, and the way the man had his head cocked down slightly as he walked slowly.

This adorable man reminded me of my dad today.

On other days, it’s music that shuffles onto my Spotify from my favorite song list, or a dish my mom will make, as my dad always worshipped her cooking. I think about my dad every single day, and especially today, two years since he died.

154959_473113373610_4361923_n — My dad on the exercise bike when he still lived at home.

I think of him so fondly when I’m riding my bike in the park for exercise, or while on a Citibike to get around the city and I maybe tell a motorist who gets to close to “Watch it!” as my dad fancied himself a very defensive driver and cyclist.

He instilled in my brothers and I a sense of humor (see the funny in everything), a love of parks and recreation, and music, of course. One thing my mother always says about his last few years on this earth is that despite experiencing some very tough times with complications due to Parkinson’s disease, he never complained. He never asked, “Why me?”

Can I say to certainty that he never wondered about that? Of course not. In fact, sometimes when I’d visit my parents at home, I’d walk into his room and find him pensively looking out the window, or trying to scribble his signature in a notebook (Parkinson’s effects your ability to write/hold a pen).

But he never let on to us, instead choosing to talk to us, and ask when his next doctor’s appointment was as staying home was NOT fun for him, as it is not really fun for me, either! Social butterflies are us. 🙂

327582_744050360441_1038813202_o — With family from Colombia (and me, my brother Rich, and nephew, RJ) and my mom in NYC during Christmas time

Because he was homebound, and later in and out of hospitals and nursing homes, in his later years, and lost his ability to speak, hearing about family was one of his biggest joys and I’m sure he’s looking down on them lovingly to this day. He smiled SO WIDELY whenever my nephew, RJ, or my niece, Bella, were around. Even in ICU in his last month, seeing Bella made him smile.

We’re thinking of him lovingly today, and every single day. Here is a piece I wrote about him in 2015, and an obituary post I wrote a couple of days after he died in 2016.

RIP, dad! We love and miss you!

Riding with the wind

On June 23, 2015 By scenebyginaIn family, New YorkLeave a comment

Photo taken today in Central Park: http://scenebygina.tumblr.com/post/122200618607/great-ride-using-my-jamis-commuter-bike-around

My father has been doing somewhat better. He continues to stay free of any infections, and I’ve been sitting him up whenever I visit. It’s tough, his arm and leg muscles seem to get more contracted as he’s been bedridden for six months now, but I don’t care; I see him more alert and awake when I help him sit up.

In the meantime, a hobby that my father enjoyed in his 20s is something I’ve picked up: cycling. I use a Giant Sedona CX (2005) for riding around Jersey City, and various New Jersey parks. I had a great two and a half hour ride along the Hudson waterfront, from Newport in Jersey City to Weehawken this past weekend.

I also have a a Citizen Tokyo folding bike for shopping at the produce market nearby. It’s ideal for short trips only.

And I just bought a 2011 Jamis commuter 3 bike for CITY riding! I rode an hour through Central Park today, up to 110th street and back to the Columbus Circle area. It was hot today, but that doesn’t stop the action in Central Park, which was full of runners, cyclers, roller bladers, and more.

I can see why my dad loved to ride his bike. (I remember he rode a Gazelle.) Like running, it clears the mind, but it’s much more relaxing. Something about that wind hitting your face. (I imagine it’s what people who ride motorcycles love, too.)

And, of course, I’m doing something I know my father loved.

All hands on deck, but not really

On June 15, 2015June 15, 2015 By scenebyginaIn UncategorizedLeave a comment

This weekend was supposed to have been an all-hands on deck situation.

I surprised my mother with a trip to Miami to visit her mother last month, and the trip was this weekend. I had to surprise her because had I waited for her blessing to buy the airline ticket, it would have never happened. Her mother — my grandmother — is 97, and has suffered from Alzheimer’s for many years, and last month, after a stroke, doctors told my aunt — her caregiver — to start planning for end-of-life.

Somehow my grandmother got better, though she is now living in a nursing home, but I still thought my mom should go see her. It had been two years, because, as I’ve explained before, she is my father’s caretaker (Parkinson’s.)

So, of course, my mom’s main concern is who would be there to visit my dad in the nursing home in her absence. That the man is confined to a bed is bad enough; that the bed is not in his own home is the part that we struggle with on a daily basis. Of course, I imagined it would be me, but asked my brothers to support, which I assumed they’d do. I told them they didn’t need to stay there for hours but just drop in.

They didn’t. I had to beg one to go today, and still went to visit him myself later, of course. I can’t not go, and that part is fine.

I am constantly reading up about how to deal with change, or deal with anger when situations are out of your control. I know I have to just deal with it, but it still sucks.

It wasn’t just about visiting my dad. I noticed my mother was low on basic essentials she needed in the house. It’s not a money thing; it’s a time thing, so I did one massive grocery shop. I did absolutely nothing social this weekend (unlike them) and that part is fine, but it still sucks.

On providing comfort

On May 20, 2015May 20, 2015 By scenebyginaIn Uncategorized2 Comments

Lutheran comfort dogs. Photo via Religion News Service.

I spent much of the day in my father’s room at the nursing home today. I got word that a doctor ordered a sonogram last night so I wanted to be there since the evening staff last night had, not surprisingly, zero idea why the test was ordered. Thankfully, the results (checking for internal bleeding) were negative.

Last week, in a flurry of work and neighborhood social activities (conferences, commencement, and a blogger meet-up), I missed four consecutive days of seeing my dad. I felt terrible about it (and enlisted my brothers to go the extra mile and visit more) but I’m not going to lie, I felt as if I could get a little bit more done in this thing we call regular life. I did a huge grocery shop, for instance. I washed my own clothes as opposed to sending it to the wash and dry. I concentrated a little more than usual on work. You know, the way I used to be. But at the back of my mind, I wondered if my dad noticed I wasn’t there, and hoped my mother was OK keeping up with it all, especially since, in recent weeks, she returned to her part-time job.

So I’ve gone three times since Sunday of this week and noticed my dad is uncomfortable. Again, the Parkinson’s, the fall and hip fracture, and surgeries, have eroded his ability to form words. Everything sounds like a light moan. So light, that I never worry about the nursing home staff getting annoyed with him; they can barely hear him!

But on Monday night, my brother, mother, and myself, could not figure out what he needed. The choices are limited: adjustment of his position on the bed? Ice/water in the mouth (because he has trouble swallowing, he cannot eat or drink)? Diaper change? Pain?

Many times, he does not (or will not?) respond ‘yes’ or ‘no.’ Sometimes, after a full half hour of throwing different options out there, he’ll say yes (or no) to something I asked the first time. It’s frustrating.

And it also has me wondering if our visits hurt him. Stay with me here: Whenever I get there, if he is NOT sleeping, he’s calm. Quiet. And then he sees me and start trying to speak. Trust me, I’ve thought about whether he’s trying to tell us he’s being mistreated, but my mom was there so much before she returned to work, and through observing how they treat other patients, that cannot be it.

(*This is not to say I haven’t seen the staff get a bit snippy, or flat out ignore some other patients. In fact, it is the vocal and sometimes, most able, ones who find themselves ignored. :/)

So, I’m left wondering if dementia has really set in. After my dad fell, the hospital staff, unable to understand him, classified him with mild dementia. “Confused” is the word I’d see in his chart. Obviously, I hastily disagreed: He knew where he was every second. It was they who were confused about what he was trying to say. Or, when feeling ill with pneumonia, he wouldn’t respond to them. This is also confusing!

But, now, I won’t deny that he may have some mild symptoms. After all, it is expected in patients who have had Parkinson’s for many years. He is coming up on 19 years with this tough disease.

We are not going to stop visiting him, of course. I just wish there was a way to allay him of whatever is causing discomfort. Most of all, I think, if I were a millionaire, I’d purchase some technology where I could just strap some wires to his temples and a machine would tell me what he is saying.

I’ve said this before — my dad is where I get my personality and I sure do miss talking to him about sports, music, and jokes.

Get me wheelchair, damnit!

On April 9, 2015 By scenebyginaIn family, Loneliness, People1 Comment

Stock photos for nursing homes? Not a thing of joy.

Once again I find myself at a point in time when something has to be decided on regarding my dad’s care, and I’m still incredulous at the reality that he has to be cared for at a nursing home. At a nursing home!

As I’ve stated on this blog before, living in a home was a thing of the movies, or the soap operas I’d watch as a tween on summer vacation. You know, uber wealthy soap opera family puts grandma away so they can start planning how to get all of her money, stocks, and high-end art. It’s certainly not something our family would ever do. But here we are.

My father gets his nutrition (and Parkinson’s medication) through a peg tube. He receives nebulizer treatments three times a day. He is wearing a catheter because, as he is incontinent, urine could make the bed sore he has on his sacrum that much worse. Oh yeah, he’s wearing a vac machine to drain the wound. It’s a lot.

But it gets worse.

As physical therapy pointed out to us last week, the regimen they have for him isn’t showing any improvement. And then came the warning: insurance is going to cut this plan of care.

So now the social worker at the nursing home (review to come later; I’m not happy with several things about the culture there) is trying to find a long term care facility that will accept my dad’s health care insurance (an Aetna plan administered via the Medicare program. It’s not the best, but it’s something).

I asked physical therapy if there’s any way we can get a wheelchair so we can take my dad outside when the weather warms up. (This weekend, we’re supposed to get above 60-degree weather!) They stalled (as usual) with an excuse about having to order it. But the thing about this experience is that it has made me a major league demanding (yet nice; no yelling!) bitch when it comes to my dad’s care at that facility. So, it’s GOING to happen. I don’t care if I have to make 100 phone calls and knock on every single administrator’s door.

Wish me luck.

What is a normal life, anyway?

On February 21, 2015 By scenebyginaIn UncategorizedLeave a comment

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.

On ‘working’ from the hospital or nursing home.

On February 11, 2015February 11, 2015 By scenebyginaIn family, PeopleLeave a comment

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.

On Frontline: Why Is It So Hard for Doctors to Talk to Patients About Death?

On February 11, 2015 By scenebyginaIn family, People, senior citizensLeave a comment

Via PBS’ Frontline / Tim Molloy:

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.

“It was not so good.”

On February 10, 2015February 11, 2015 By scenebyginaIn family, PeopleLeave a comment

10460906_10152305021573611_7511640229892742644_o — My parents and I with my nephew at his preschool graduation in June 2014.

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.

Science Daily: In U.S. First, Surgeons Implant Brain ‘Pacemaker’ for Alzheimer’s Disease

On December 6, 2012 By scenebyginaIn family, People, senior citizensLeave a comment

Ed. note: My dad had this surgery for Parkinson’s disease seven years ago. I’m glad they now offer it for Alzheimer’s!

ScienceDaily (Dec. 5, 2012) — Researchers at Johns Hopkins Medicine in November surgically implanted a pacemaker-like device into the brain of a patient in the early stages of Alzheimer’s disease, the first such operation in the United States. The device, which provides deep brain stimulation and has been used in thousands of people with Parkinson’s disease, is seen as a possible means of boosting memory and reversing cognitive decline.

Scene By Gina

Tag: Parkinsons