Good Friday

by mymomkathy

I’m in my kitchen on Good Friday, I’m boiling eggs, and thinking about my mom. I always think about my mom on Good Friday. I was born on Good Friday, and every year my mom and I would talk about that day. In that way I had two special days every year, one was birthday, and the other was Good Friday.

I didn’t talk to my mom today because she was sleeping when I called. I did get a voicemail from the speech therapist who told me mom was doing much better on her special diet and using her special cup. She doesn’t have to be monitored as closely at mealtimes. So even though I didn’t get to hear from her, I got to hear about her, and that was good.

But back to boiling eggs. My brother and I are headed to see mom tomorrow and to dye Easter eggs. I bought a dozen Grade A extra large white eggs for the outing, the kind we always used. I ate two for breakfast so we have ten to work with tomorrow. 20120406-213142.jpg

I honestly can’t remember how long it’s even been since I dyed an Easter egg. Seriously? 15 years…at least? I didn’t even think I’d remember how.

So I started flipping through old pictures and found there was quite a lot I actually remembered…how we’d put down newspaper all over the kitchen table and then put food coloring, water and a little bit of vinegar into coffee mugs. Any other day of the year it seemed like we had waaaay too many coffee mugs in our house for a family of two adults and two kids. Easter egg making time was the one day that there didn’t seem to be enough mugs for all the color creations our brains could come up with. I remembered how we would do a few solid eggs. Then we’d get bored with those and do a few half and half eggs by holding one end in the dye, letting it dry and repeating it in a new color. And I remember how no matter what, Easter egg dying time ended with my brother and I each putting an egg into as many colors as we could and attempting to make the ugliest Easter egg possible.

Some rocking vintage family Easter shots, in anticipation of tomorrow’s big adventure…

My first Good Friday
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My second Easter.
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My first peep
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Sharing my Peeps with my dad
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Joey’s first Peep
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Easter egg hunting with my brother and cousins
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My brother showing off the eggs he found
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Easter styling I
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Joey’s first Easter basket
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Easter styling II
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A very 70’s Easter
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Mom Dreams

by mymomkathy

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A constant through the progression of this illness has been my mom dreams. I have very vivid, very real dreams about my mom, and in my dreams she’s never sick. We do things together like take a ride in the car or go to the grocery store. Sometimes we are planning some dinner or a holiday is coming up we are trying to make a to do list. Sometimes we are trying to plan how to meet up with Joey. Just normal stuff you do with your parents.

Sometimes I’m a kid in the dreams. Sometimes I’m an adult. My mom always seems to be about the same age regardless of how I show up. She’s beautiful and shiny and I can hear her voice very clearly. I can recognize her Appalachian twang as she says my name. I can hear her calling to me when I’m in another dream room to ask what I’m doing. I can hear her laughing. All of it is still in there. All of it still in my head when I dream.

I was scared for a while it would disappear. She was either forgetting or not willing to talk about things that had happened in the past. I was so worried I would only remember our struggle, our anger and our frustration as we were trying to cope with Alzheimer’s. Our lives seemed busted up and cracked into a million pieces. And it felt as if the despair of the time was going to seep in and fill each and every one of those cracks till there wasn’t any room for the past. We’d be forced to forget the good stuff because the past and the present could not coexist and us stay sane.

So on one long car trip when my brother and I were driving the 3 1/2 hours to see my mom in her first nursing home, we talked about it. I told my brother I was scared of forgetting the good memories of mom. I was afraid I’d remember what it was like when we were growing up and only be left with the slow progression and the loss. My brother and I agreed that we wouldn’t let that happen. We agreed that we would tell each other the same stories over and over. We’d look at pictures. We’d help each other remember. The idea of this blog was born that day, but took time to evolve.

I also think my really vivid mom dreams started that day. My brain wanted to make little movies so I can remember more than a story or a picture. I could see mental video clips of the person I remember and keep her alive when I need her to give me perspective.

And most recently my mom has been telling me advice in my dreams. It’s advice on things I’ve been wrestling with inside. Some of it is about things I’ve agonized about internally without a clear idea of what to do. Sometimes it’s advising me on things I know but need a push to do. In my dreams lately, she is there and gives empathy, listens, and validates that my decision is the right one.

I guess one way to look at it is that I have two moms. One mom I visit, we take drives, sing songs and drink milkshakes. The other mom shows up predictable, recognizable, listens, and gives me support and advice when I need it. Job sharing moms. We are a very progressive family.

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Calling Joey

by mymomkathy

Mom and I hung out today and called Joey from the car. It went like this:

Joey (on phone): Hi mom.
Mom: Hi Joey.
Joey: How are you?
Mom: I’m fine.
Joey: What are you doing
Mom: I’m rocking back and forth in my seat.
Joey: Where are you going?
Mom: We are going to…(pause)…a place.
Joey: What place?
Mom: We are going to a place, Joey.

Matt: Tell Joey we got the car washed.
Mom: We got the car washed, Joey.
Matt: (tapping on a plastic cup) Mom, what is this?
Mom: That’s a milkshake, Matt.
(Pause)
Mom: Hey, Joey. I got a milkshake. I got a milkshake.

🙂

Say it. Say it again. Say it again, Kathy. Say it again.

by josephademarco

It was our turn to order.  She was rocking back and forth.  My mom Kathy shuffled up to the counter.  She stood there rocking.

The young lady behind the counter greeted us.  She took our hot chocolate order and pressed all the buttons on the register.  The young lady looked at me and smiled brightly.  She looked at my mom and asked, “Is there anything else I can get you?”

“Hey!” Kathy said in her monotone voice looking at the young girl.

“Yes maam?” the young girl said sweetly, smiling back.

“Hey.” Kathy was rocking back and forth.  Her cheeks were sunken and lips pursed where she was sucking in her cheeks against her teeth.  “Hey.  I farted.”

The young lady stopped smiling.

“I farted.  I farted, Kathy.  I farted.”  She just kept repeating it, over and over and over and over again.

The young lady looked at me slightly red faced, slightly nervous.  I straightened up.  I smiled.  I was a bit embarrassed.  Not as embarrassed as I used to get, but a small twinge in the belly.  I handed my money to the young lady.  “Umm, she farted and we’ll just take the hot chocolates.  Thanks.”  I didn’t know what else to say.  Kathy was still repeating, “I farted” behind me.  I got my change, smiled again and gave her the standard, “Have a nice day.  Thanks, again.” The monotone “I farted” was like a skipping record still playing as we stepped to the side to wait for our order.

We drank our hot chocolates in the car.

My mom repeats things.  She repeats things quite a bit. My mom can’t initiate conversation anymore.  I imagine this is her way of having a conversation in the only way she can now.

Sometimes she adds a name at the end of the sentence, sometimes not.  “Speed limit 35.  Speed limit 35, Kathy.  Speed limit 35.  Speed limit 35, Joey.  Speed limit 35.”

Occasionally I can redirect her, sometimes not.  You can ask her a question in the middle of her echoing, she’ll stop, answer, and then repeat her answer.  I don’t mind it.  I know it is the only conversation we can have now.  I sometimes think her repeating is her way of having that conversation, the heart-to-heart, if she could.  Every once in a while you get a “farting” episode in the McDonalds.  Once she repeatedly called someone in the Big Lots “heavy” (not her exact words).  But usually she just helpfully reminds you of the speed limit, or what you are ordering in the drive through.  It’s Kathy’s conversation.

To reenact this experience for yourself, to get a first person point of view, please follow these  steps:

1) Go anywhere in public (McDonald’s will do)

2) Pass gas (the decibel level is up to your own talents)

3) Look at the nearest stranger and with a blank, matter-of-fact tone say “Hey.”

4) Say “I farted”

5) Repeat “I farted”

6) Repeat “I farted” and add anyone’s name at the end (Example: I farted, Joey.)

7) Repeat steps 4-6

8) Repeat steps 4-6

Visitors

by mymomkathy

Yesterday was an exciting day. For the first time since we moved mom to the new nursing home in August she had visitors that weren’t me, my brother or my sister-in-law. Or weren’t the numerous family members and friends of other residents that my not-very-shy mother has come to endear herself to. My mom’s friends from home, Paula and Debbie, made the trip to visit. Before they went I sent them the following note to help them prepare and to provide some ideas for what to do when they got there:

So excited to hear how the day goes. I had one of the best days I’ve had with her in months yesterday. She’s doing really well. She will be slow to get started. Just tell her your names a couple of times. I told her you were coming. She said she remembered you and we looked at pictures yesterday.

Really good to dos for your visit:
-brush her hair and put it in a good pony tail
-sit in rocking chairs out front and paint fingernails if it’s not raining.
-have her show you the jukebox. Pick a few songs and sing.
-walk back and forth a dozen times to and from the cafeteria. Lol
-quiz her on who the people are in the photos on her nightstand (me, Joey and Katie)
-if it’s not raining you can take her on a little walk around the parking lot or down the edge of the road.

You’ll figure it out. She gets excited and just repeats the same word over and over and over. Just tell her to relax and calm down. She will. Lots and lots of hand holding. She likes to walk holding your hand. And lots of hugs. She’s a great hug giver these days.

They had a great visit. I got a phone call just from Paula and Debbie just after they left mom and they were so happy to have gotten to spend some time with her. And from all accounts mom had a great time to.

Got this note afterward along with the pictures below:

We had a great visit. I think Kathy enjoyed it more than her face indicates. We talked, reminisced, worked puzzles, sang, brushed her hair, walked throughout her wing, watched TV. I so wish she was closer so I could visit more often.

We polka dotted her nails. 🙂 How do you like the new shades? She wouldn’t take them off.

French Fries and Milkshakes

by mymomkathy

Had a really great day with my mom on Friday. She was upbeat, alert, chatty, and balanced. It’s been about a month now since our failed experiment to take her off the one psych med took us back to the psychiatrist to put her on something new. And it actually seems to be working for now, so I guess the failed experiment wasn’t failed at all. She really needed to be on something new. Like so much of coping with this disease, remedies are trial and error.

We mixed up our regular routine of hot chocolate and went for french fries and milkshakes. Here is a video of the outing that ends with us returning home, mom so pooped that at 4:30 is telling me it’s time for her to go to bed and time for me to go to my bed.

Unchained Melody

by mymomkathy

So I have this lingering fear that we will get to the point where my mom only remembers songs I hate. I know it’s crazy, but case in point, I had “Unchained Melody.” Really hate it. Always have. It goes too slow. I hate it so much that I almost started hating pottery because of that scene in the movie “Ghost.”

What I have found is that it really doesn’t matter if all she remembers are the songs I hate, because when she is singing them, I’m not worried about what I like or don’t like, I’m really just focused on how happy my mom is in that moment, and everything else just falls away.

Hit the Road Jack

by mymomkathy

When we were in McDonald’s a couple of weeks back, Ray Charles came on the radio and my mom got Hit the Road Jack in her head and kept repeating it over and over.  I had left my camera in the car so when we got back in to run errands, it seemed like the perfect way to start the drive…