Calling Joey

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.

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

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

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

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

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…

Going Going Gone

Ok, here’s a fun fact about middle stages of Alzheimer’s that nobody tells you about…loss of bladder control. Up until a couple of years ago I could count on one hand the number of times I’d seen my mom pee her pants. Exactly three.

Two times were accordion related. As a kid my mom had taken accordion lessons. (Once I asked her why she took accordion lessons. She told me it was because they were too poor for a piano.) My mom’s accordion lived in the furnace room of our basement. Twice I’d seen my mom so drunk that we convinced her to get out the accordion and play one of two songs she claimed to still remember how to play…”Ode to Joy.” Both times she got about half way through and we would all be on the floor laughing so hard, and she’d be laughing while she tried to play and sing, and peeing in her pants.

The third time was when we buried our cat Sniffles. He had died after getting in an attack with another cat. The neighbors who had found him put him in a cardboard box and brought him to our house to bury. My mom was with me while I dug a hole in the side yard. Sniffles had been a cat we shared with the next door neighbors so mom decided he should be buried in the side yard between the two houses.

It was cold and drizzling and there was the start of thunder and lightening. We looked like grave robbers in a horror movie. When the hole was dug, I opened the box and attempted to pour Sniffles in. But the blood had caused him to stick to the side of the box and he swung out and dangled frozen and lifeless from the box. My mom and I both let out huge terror-ridden screams, then completely cracked up about how scared we were. We laughed so hard she peed her pants, and left me to finish the job.

Those were little accidents. Now my mom rarely makes it to the bathroom ahead of going in her pants. She wears a diaper full time now. And I have to say that I hate changing her diaper. I hate it. There is a lot of this illness that you learn to embrace. Nobody wants to embrace a dirty diaper.

And just like anything with this disease, there are degrees. Things that start strange and shocking become routine and normal. This came on slowly. It started as accidents that happened when we stayed out too long between bathroom stops. Or as accidents that happened when she got stressed or anxious. I will never forget a trip to see a psychiatrist for the first time. Mom was anxious and really didn’t want to go. I got lost and as we walked up and down the block trying to find the office, I got more and more agitated. When I finally found the office door, I turned around and there was mom, standing on the sidewalk peeing in her pants. We had to cancel the appointment and go back the following month when they could fit us in again.

There are strategies in place now to try to make this manageable and as close to normal as possible. Mom always wears a diaper. There is a pee pad on her bed. Joey and I both have pee pads for our cars. We go to places that have private restrooms so we can go in with mom and help her out. And our day bags when we go out shopping or driving always include an extra diaper and change of clothes.

We make the best of it. But it never becomes something fun.

And sometimes when I get to feeling sorry for myself…how awful is it that I have to change this diaper… I remind myself that it isn’t a picnic for my mom either. This is not the way she would choose to have things if she had any control over the situation. And I’m sure changing my diaper wasn’t her favorite part of my being a baby. I’m sure it was the funny sounds and the smiles and the cute things I did that were the fun times. But, still, the diapers were always there, and they went hand in hand with having a baby. They still are. And we deal with it, and we get through it, so we can get back to the fun stuff.

I AM Smiling Matt

This is one of my favorite faces my mom makes.  When you tell her to smile for a picture, she does, for like a half a second.  Then you snap the picture and you miss the smile.  So you have to do it again.  “Smile mom.”  She does it, but by the time you take the picture, back to neutral face.  So this goes on about 5 or 6 times until she finally says, “I AM smiling Matt,” and makes this face.  The best.