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.
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.
I’m trying to be more on a schedule where I get my life somewhat back into a normal routine, by going every other day to see my dad at the nursing home, but it’s not working out so well. I get racked with guilt when I skip a day, and usually spend the next two or three days rushing there after work.
My dad is actually doing well. I mean, he’s not jumping out of bed and walking around, but he’s been without pneumonia or infections, and his sacral wound (bed sore) is coming around, albiet slowly.
My brother moved mountains (that’s just me saying it takes MOUNTAINS to get action at the nursing home) to get my father’s old primary care physician to check him out, instead the invisible doctor who has a contract with the nursing home. I’m glad he did. He found my dad to be anemic and said if he can’t get stronger, he’s not going to improve.
So that’s where we’re at. He ordered some changes and I continue to see my dad more awake these days. It’s crazy to think that, in February, and some of March, we really thought we were going to lose him. He was rarely awake and, at one point, had to be intubated.
Thanking our lucky stars, and also my mother’s friends from church, who keep visiting and praying for him at his bedside on a weekly basis.
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.
This New York Times article touches on elderly people and loneliness reminded me of my aunt, who not long ago lost her husband of more than 50 years. She’s in her 70s and lives alone, yet I know my other family members make sure she comes over often and vice versa. I don’t think she should live alone, but I know she wants to be strong and not impose on anyone.
So far, it’s working out. She’s keeping active and I think that’s important. Anyway, onto this great story:
The Neighbors Who Don’t Knock
By John Leland
NO one on the floor can say how or why it happened, what made them different from other residents in the building. Maybe it began with a small thing: a cup of coffee brought from across the hall, a phone call at night to make sure the day’s demons were not filling up the dark.
They are about a dozen New Yorkers in their 70s and 80s, mostly women, mostly living alone, on the fifth floor of a public-housing building for older residents in Washington Heights. They have enough health problems to fill a nursing home. They are prime candidates for social isolation and the consequences it brings.
Instead, on a morning in March, they are a crowd, squeezing into the apartment of Bienvenida Torres, 78, in what has become their project for the past year, and a test of their bonds as a community. On June 30, 2011, Ms. Torres’s daughter was stabbed to death in her apartment in Co-op City in the Bronx. The police arrested the daughter’s common-law husband, who remains on Rikers Island awaiting trial. Since the killing, Ms. Torres’s neighbors have been united in purpose, to help her weather the blow.