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.

On nursing homes, family visits … and resentment

On March 18, 2015 By scenebyginaIn family, Loneliness, People1 Comment

I should be happy (?) that my father is OUT of the hospital and back into a subacute unit of a long-term facility, aka a nursing home. But this, his third round back, is more depressing for me. He sleeps more, interacts with us less, and it seems to get thinner by the minute. There’s no other way to say it — it feels like I’m losing him.

I’m also slightly, ok maybe definitely, losing my [was it ever normal?] mind. I’m angry. A lot. It doesn’t make me want to punch anyone; it makes me want to check out and stop speaking to everyone (except my parents.)

Life goes on and, more and more, it’s only my mother and I who visit and spend hours with my father (my mother more than all of us, as she has been forced to retire as a result of my dad’s fall and hip fracture.)

My brothers, both who have children, visit less and less. Two and three days go by and no visit. And I resent more and more. I have to be there every day. Throughout this whole ordeal, I’ve missed two days. I can’t see this going any other way for me.

I’m not going to lie; I’m pissed about their lack of devotion. I do not understand how you could not visit your father, the sole reason we were even born into this country, and became the people we are today. And checking in with my mother? Not so much.

Am I going crazy?

I actually met with a friend recently (something I hadn’t really done since my dad fell and became very ill) who also has a father in a nursing home. The situation is different. This person isn’t close to death, but immobile, and being in a nursing home is because the person’s spouse simply cannot handle the complicated care.

But this friend, one of five, told me that only one other sibling visits their father. “What can you do? You can’t get mad at it. And you can’t keep asking them to visit.” That’s true, I guess.

It’s hard to accept. I feel like I have anger, acid, or vomit, hanging at bay at the pit of my throat lately. I’m so disgusted. How can people be like this? Why are people like this? How dare they live their own lives? How dare they go out and have fun? Get a haircut even? Anything, all while my dad is stuck in a room. He can barely talk. He’ll probably never feel the outdoor air or direct sunlight again? How can you not just want to sit there with me!!! Aaaarrrrghhhh.

The anger and resentment affects so many other things. It’s like a bad domino effect. (Only I’m not reacting. As per usual, I’m bottling it all in.)

For instance, I posted a story on Facebook about a guy who walks 21-miles to and from work in the suburbs of Detroit every day because he doesn’t have a car. An old friend (Let’s go with acquaintance. If we were once friends in high school but haven’t spoken since then, don’t hang out in person, are we friends, really?) comments that the man is stupid for walking that far for a job that pays $10 per hour. -__-

I want to de-friend and block this person FOREVER. But not before insulting the person’s ignorance, of course.

A nurse’s aide at the nursing home gives me a look when I nicely ask her to do something. Nothing monumental. Just, oh, I DON’T KNOW, turning and positioning my father — something that should be done so he doesn’t develop another pneumonia and worsen his bed ulcer. She then s-l-o-w-l-y obliges. I want to throw a shoe at her.

A tourist slows down and then stops short in front of me when I’m on my power walk to work in the morning? Yeah. I lied. I maybe want to punch this person.

I need a break.

I know what I need to do is just live MY own life the way I want to (which is visiting my father as much as I can) and realize that maybe my brothers are experiencing my dad’s demise differently than I do. Maybe visiting is hard for them. Maybe.

But being angry about it, which I am not saying this blog post absolves me of, isn’t the way to go. I WILL TRY to let it go. I can’t promise I will, but at least it’s out here on the record, right?

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.

“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.

Scene By Gina

Tag: nursing homes