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Brother: I’m going to miss you when you move. How much will we get to see you?
Me: I don’t know, but I’ll see you enough, don’t worry.
Brother: Will you get new friends when you move? What about a new accent?
Me (laughing) : Of course I’ll make new friends… but a new accent? Nah… can’t get rid of this Philly/Jersey voice even if I wanted to.
Brother: So you’ll still sound like you?
So yea, what this guy said:
I have a young family on my mom’s side. Another way I like to say that, affectionately, is that my grandmom & mom were “little hussies.” My great-grandmom will be 89 on Halloween; my grandmom is 64; my mom is 46, soon to be 47; I’m 28. You do the math.
Mostly, I feel lucky to have such a young family. I mean, how many people get to be 28 with a great-grandmom? I realize that not everyone gets to experience their family for this long, and I’m grateful for it.
My great-grandmom babysat my brother and I when we were little, and she now needs 24-hour care because of her dementia, as I’ve written about before. The role reversal is painful for me to watch; I did not expect to be this young and have to help care for and watch the decline of someone I love. As a young adult, when I began to contemplate death and the future, I really only thought about my mom. I thought about how I’d get to live a relatively easy life (concerning the caring of my elderly parents), as I figured I wouldn’t be dealing with that until I was at least, what, 60? Although I’m not Gram Wis’s primary care giver, I still help whenever I can and care very deeply about her; I’m very close with her. I suppose it’s simply – heartbreaking. I keep thinking to myself that I hope the genetics of dementia disappear and bypass my grandmom and my mom and me because to go through this another two times would be devastating.
My uncle had taken her to the bathroom when a neighbor knocked on the door, so he instructed her to stay put until he came back. He talked to the neighbor for a little longer than he planned. When he came back in, Gram was in the living room, completely naked, sitting in her chair. When he asked her what she was doing, and then told her she was naked, something must have clicked and she realized what she did, and she started crying, apologizing, saying that she doesn’t know what’s wrong with her. Besides the fact that she didn’t know what to do when left alone, so she choose to get naked and go in the living room, she shouldn’t be walking without a walker – she can easily kill herself or seriously injure herself. I could barely keep from crying when my mom told me the story – and this is just becoming common.
I don’t wish for her death; I love having her in my life. But this is no way to live. It’s devastating to watch her because she understands that she’s “not OK” and she “doesn’t know what to do with herself.” She’ll tell you that she used to remember things, or know how to cook, or know how to go to the bathroom … but she just can’t recall anymore. That’s the worst part – her suffering. On her “bad” days, she’ll cry to me and tell me that she wishes God would take her. I can’t bear to hear it anymore. My heart hurts too much for her.
I pray to a god that I don’t even believe in to make the days easier for her. To bring her peace. She deserves it.
I watched Gram Wis again last night, and again, I had another sleepless night, very similar to this one. I look horrific – like I got punched in both eyes without the bruises, my eyes are that puffy and swollen from no sleep. I digress, though, because the purpose of today’s writing is to focus on the fact that before she went to bed she was having a really good evening.
We were watching the Flyers game and she interrupts our viewing for the following exchange:
Gram: You’re Jenny?
Jenny: Yes Gram.
G: And are you here? Right now? (with a doubtful look on her face)
J: Of course I’m here. I’m sitting with you, we’re watching TV together.
G: (Reaching out her hand) Let me feel you.
J: (Giving her my hand, and laughing out loud) Here. See?
G: (With a surprised look on her face, smiling) You really are here!
J: I know, silly. I told you. Didn’t you believe me?
G: No, I didn’t.
(Both of us laughing)
It was funny. It was so cute, how surprised she looked when she felt my hand. She’s so random and wacky. I’m glad there are moments of laughter.
People who have dementia tend to focus on a few things, and focus hard core on them. We have to be careful what we tell her sometimes. For instance, we don’t tell her she’s going to the hair dressers until the day before. Because if you tell her days before she’ll talk and think about it nonstop, and think she’s going to be late, and wonder when she’s going. When she focuses on something, she talks to you about it nonstop. Then, when you ask her for a break, she’ll say OK, then 5 minutes later tell you about it as if she never mentioned it before.
Last night she was focused on three main things:
1. Her wedding anniversary. She didn’t know the year, so she kept asking. I kept saying 1942 although I’m not sure that is accurate.
2. A really cool picture that was set in a piece of jewelry that resembles a watch, except instead of the face of the watch there’s a picture in there. It was a picture of her and my great-grandpop, looking beautiful and laughing. It is such a cool picture. She kept asking me if I seen it, which I had, you know, when I got there. That went on all night.
3. The book, Green Eggs and Ham. It was sitting on this little bookshelf that she has and she kept pointing to it and talking about it. She asked me if we were going to read it, and I told her that sure we could, around bedtime.
So read it, we did. She read it to me and then I read it to her. It was cute. I don’t think I realized how long that book actually is lol. She would read a few pages, say the last is “Sam-I-am,” and she’d shake her head, look at me with a quizzical look, and say, “That doesn’t make sense.” Then she’d go back to reading.
So afterward I videotaped her and was asking her some basic questions, like who I was. Her various answers include: Green eggs, Dolores, and Ginger – none of which I am. Here’s the video. Notice, every time I ask her who I am, she consults the book. Also notice, she changes the subject towards the end to ask me if I seen her picture, the one in #2 above. Funny.
She was up an average of 5 times every hour.
11 pm till 5:30 this morning.
Like an infant almost except
There’s nothing I can do for her to comfort her
Except tell her to go back to sleep
Everything is ok
I’m right here
I have to get up for work soon
You HAVE to go back to sleep Gram.
Still she cries
In the middle of the night starts reciting her address
Her son’s cell phone number
Asking where her Jenny is
Asking if I can help her.
I’m right here, I say, and everything is ok.
I am ok? She asks.
Go back to sleep.
She had a bad night, last night.
I am feeling the effects of it this morning
Don’t know how I will make it through the day
Or the two hour drive to B’s house
Coffee never worked for me.
I kept awake in the car ride this morning
By music with a lot of base
Windows down singing
GaGa, ooh la la
Want your bad romance
Until the people next to me
That’s what happens in gridlock traffic
At work now, responsibilities endless
You can see it in my eyes
I feel so sad for my Gram
Dementia is heartbreaking
So I try to remember who she used to be
When she took care of me
And would pick me up from nursery school
And we would walk down Richmond St
Where she taught me how to clench my fist in a ball
Put it up at my ear and then pull down
To get the truckers to blow their horns
Or when she taught me how to read by kindergarten
And let me play on the piano
And so much more, there is, to remember
Of when the role was reversed, the majority of my life
So I think about this
Instead of the way she forgets what to do with the toilet paper
Or how she looks so frightened and confused all of the time
Or how I change her pad because she couldn’t make it
Because these things hurt to think about,
And they are just
A small part
Of all of her 87 years.
So I’ll do my best to get through the day
Life is not that long
And she won’t always be here
And I won’t remember a tired day at work
But I will remember
I was babysitting last night at my mom’s house – my 3 youngest brothers and my great-grandmom. Why I’m babysitting in the middle of the week and why my great-grandmom is apart of this is a story for later.
My brothers weren’t fighting much of the night, which was a welcome and surprising thing. Towards bedtime, I went into their bedrooms to wrangle them up to brush their teeth. Brother #4, who is 11, came in from his parent’s room crying. When I asked him what was wrong, he angrily told me nothing. I walked into the living room to find Brother # 5, the baby, whose now 9.
“What’s wrong with #4?” I asked.
“Nothing,” he said.
“Please tell me buddy. He’s really upset.”
“Well,” he started, “he’s upset because Brother #3 (who will be 13 in a few weeks) took his girlfriend. In fact, #3 is on the phone with her right now.”
It’s his first girlfriend ever. They’ve been dating about 2 weeks.
I finished what I was doing with Gram and went into his room to find him balling his eyes out. I mean, balling. He immediately put his head in the pillow when I walked in. When I sat on the bed, he turned his head to the wall. So, I just rubbed his back. He continued to cry. Big, sobbing, body-shaking cries. After about 5 minutes I asked him he wanted to talk, and he was quick to say no. So I rubbed his back some more.
I didn’t know what to do. There’s nothing you can do, I know, but I wanted to somehow let him know that I was there for him. He didn’t want to talk and he didn’t want to do something to take his mind off of things and I certainly couldn’t take him out to the bar for a shot or two …. So I just sat there with him.
After awhile I told him that I was there if he needed me or wanted to talk. He said ok. I told him I loved him and he said you too.
Within that hour I dealt with a little animosity towards #3 by #5 throughout the night. #4 went to another room at one point, and after a while I went out to get him for bed. He was sobbing, covering his face when I came in so I wouldn’t see him.
His little 11 year old heart was in so much pain. I felt so bad. He has no idea that this is just the beginning. That he might be dealing with situations like this with his brothers for the better part of the next 15 years.
I gave a small update to my parents last night, and when I spoke with my mom this morning she said #4 was feeling sick and didn’t want to go to school. So, they let him stay home. She got a little more of the story than I did, which was that the girlfriend told #4 that he had changed (Seriously, an 11 yr old is telling another 11 yr old that? Crazy). She then asked him if she could speak with #3. When she got on the phone with #3 she asked him if he would be her girlfriend, but #3 said that he couldn’t because he already had a girlfriend (yay for some morals!).
So, it appears that #3 possibly did not try to steal #4′s girlfriend. I guess my parents are going to get the story later. And have conversations with all 3 of them about this whole thing about sharing girlfriends and being brothers.
Such pre-teen conflicts.
I know he’ll be fine soon enough, but really, it was heart-wrenching to watch. Poor little guy.
Love: Such a complicated, wonderful, sometimes messy, sometimes lucid thing.