We have a neurologist and a psychiatrist that I really like. It hasn’t always been the case. Over the past several years the quality of care has been variable to say the least. One big part of that was access. When we moved my mom into a home, the one we could find that would take her was in a small town without a psychiatrist or a neurologist. We would have to travel an hour or two to find someone. Then we were limited in our options. And when we would finally find someone we liked, they would retire, or move out of state, or be too busy to get another appointment anytime soon. It was a continual exercise in frustration. Not to mention it was 3 1/2 hours one way just to get to my mom. Add on the time spent after that to get to a doctor and it was a seemingly never-ending day. I don’t even like to remember how many days I logged 7 to 10 hours of driving in one day just to see her and get her to appointments.

When we moved mom in August to a nursing home that is 1 1/2 hours away, we also increased exponentially our choices for medical care. Not only are there specialists within a 30 minute drive, there are choices for specialists. And so far, the two we have chosen have proven to be patient, kind, knowledgable, and helpful to both mom and me. They take the time to answer questions. They tell me what I should be looking for. I didn’t realize how much I was missing out on by just trying to “get by” with whomever we could see.

So we are adjusting mom’s psych meds this week. The psychiatrist, like me, wants her to be on only what is necessary. So we are experimenting and taking her off one med and hoping she does just fine. Fingers crossed…

I had this idea one day last fall when I was driving home from a mom visit…to take all the old pics we had in photo albums and Ziplock bags and photo boxes and have them scanned. Then I could make photo albums on my iPad and take it with me when I visit mom. We could flip through the pictures, hopefully helping mom to remember and relive some of the good memories we’d captured on film. With her vocabulary shrinking, and her saying less of her own thoughts and more parroted thoughts, it’s hard to know what she remembers. Maybe this will help me.

I asked my friend and amazing photographer Kim Baker, click here to see here work, where I should go. She reached out to her network of photographer friends and came back with the recommendation to go local. There are horror stories of the mail order places that you send your photos to who in turn ship them overseas to scan. That notwithstanding, I’m also a big fan of supporting local businesses when I can. So I went to Ritz Camera in downtown Bethesda with two shoeboxes full of about 2000 photos to be scanned. They were great and in a week’s turnaround I got two DVDs with all my photos digitized.

So now I’m working on the iPad photo albums and I have plenty of great new images to go along with the stories yet to tell on here…

I think I just needed a few weeks to feel like I could get life together, through the madness of the holidays and the new year. Then after the new year came I felt overwhelmed because I wanted to edit videos and pictures and I felt I needed to post things in chronological order. Is that the stupidest reason not to write something? Just because it might be out of sequence. I know the readers on of this blog and they will be fine with a Christmas story in February.

So for our first real post of the new year, I arrived at the home on Monday and mom was zonked out. She did not want to get out of bed. She had her lunch and was settled in for an afternoon nap. I felt guilty coercing her with the promise of getting her hair brush and choosing an outfit. But it worked and we got up, got moving, and had a great hour of riding around in the car. We even stopped for a thrilling excursion to the Dollar General where I bought…wait for it…a new tire pressure gauge. Do mom and I live on the edge or what.

So here is a tune from the end of our drive. Unfortunately the end of video cuts off before you get this exchange:

Me: “Did you like that song, mom?”
Mom: “Yes.”
Me: “Me too. It’s one of my favorites.”
Mom: “I peed in my pants.”
Me: “Oh is that how much you liked it?”
Mom: “No, I just peed in my pants.”

Thank goodness for Oldies radio and pee pads for your car seats. Here’s to a good year…

Text messages:

Matt: How was mom when you saw her today?

Joey: She was fine. We watched tv for a while, then walked around for a while, then did a couple puzzles.

Matt: Did the nurse say she’s been ok?

Joey: Said she’s been fine. Awake during the day, and she’s now really bossy.

Matt: So back to her old self?

Joey: Not as manic or as active. Not as bad.

Matt: That’s good!

Even with a sinus infection and practically no voice, mom’s Christmas caroling cannot be stopped. A holly, jolly Christmas to all!

We had the annual Christmas party at the nursing home where my mom stays on Sunday. They told me to prepare to be really impressed…but I had no idea. The activity room was covered in garland and lights. There were two huge Christmas trees fully decorated. Everyone was in Santa hats and festive outfits.

There was bluegrass group singing songs while families danced with their loved ones..old folks hopping and wheelchairs swinging with everyone clapping and singing. There was a big holiday cookie spread to choose from. And after the band finished a group of volunteers did a Christmas carrol sing-a-long. I met so many people who in the last few months, when they would show up to see their family members, were greeted by my mom, and so had gotten to know her. The whole place was so alive and full of joy.

Unfortunately mom was starting to get sick from a sinus infection. She did a great job of rallying for the party, and even managed to greet Santa with a smile. However, when Santa left, and the party was over, it was all we could do to keep mom awake to open her presents.

Oh, I almost forgot about the presents, and it was maybe the most amazing part. We had brought a new coat, scarf and gloves for Santa to deliver to mom during the party. When he came to her room he had a huge bag with 5 times that many presents. It seems in addition to the presents families give for Santa, the staff draws names and does a secret Santa for each resident, and local churches and other groups donate gifts as well. They distrubute all these gifts among the residents so everyone has a huge bag of presents when Santa comes to visit. In the end, my mom made out, hauling in about 15 great cards and gifts! It was so sweet. And fun for us because almost everything was a surprise.

Here’s mom powering through unwrapping the gifts (when all she really wants to do is nap)…

My mom was always the BEST gift giver in the family.  Joey gives fun and funny gifts.  I try to give stylish or hip gifts.  Dad always gives you his version of what you said you wanted.  But mom, she always knew the right thing to give.  I don’t know how she did it.  It was a cool outfit the year you really wanted to fit in.  It was the perfect microwave for the college apartment.  It was the best assortment of goodies in the care package from home. 

I remember that it was one of the real signs that something was wrong with her several years ago.  She started giving us really strange gifts.  I was in my late 20s and I got a toy bear I could take in the pool.  I was way too old for a toy bear, and didn’t live near a swimming pool.  Subsequent holidays we’d get strange things she had found in the basement or a closet and decided to give to us a gift.  At the time it was so incredibly frustrating.  And I’d get so angry because I’d spent all this money on my Christmas gifts, and mom was ruining the holiday, not taking it seriously anymore.  I didn’t know that it was the illness coming on.  In the early days of the illness, it’s so subtle, that you are constently reacting out of anger and frustration because someone isn’t being normal or acting right.  She wasn’t normal.  She wasn’t right. 

One of the traditions that we have created and kept through the ups and downs of the illness is that Joey and I take mom out and let her pick out Christmas and birthday gifts for the other one.  It’s really whatever mom is in the mood for.   Usually it’s also something that is in eyesight from where she is in the store when you prompt her.  So it take some strategic placement and then a gentle reminder we are searching for a gift, and after that, it’s whatever mom sees and picks.  For my birthday this year I got a t-shirt that says “This is what AWESOME looks like.”  I wear it all the time.  🙂

This week I took mom out for our annual trip to buy gifts FROM: Mom and TO: Joey and Katie.  Before we went, I interviewed her about what she wanted to buy for them.  You’ll never guess what she came up with…

One of the wonderful things about the Alzheimer’s wing is that there are always new decorations in my mom’s room.  🙂  The residents on this wing wander all day and pick stuff up and put it down elsewhere, or have their stuff picked up and carried off.  The staff spends time every day wandering through rooms and returning pictures and whatnot to their rightful owners.  My mom had Happy Birthday balloons in her room last week.  Her birthday is in June.

When we visited this weekend there was a Rudolph the Mysterious Reindeer that has taken up residence in my mom’s room…at least for the time being…

When I was a little boy in Charleston, the place to meet Santa was at the Diamond Department Store for their annual Breakfast with Santa.  There is something great about growing up in the old days of the huge department store, where there was everything you needed under one roof, and when you went to shop, you had coffee, tea or lunch at the restaurant inside.  And once a year, the department store was lucky enough to host a breakfast meeting with Santa Claus.  And I was lucky enough to get to go.  And years later, after the Diamond Department Store was gone, Santa still came to town, but he sat on a big throne in the middle of the mall courtyard, surrounded by swirls of shoppers and lines of kids.  It wasn’t the same.

I honestly don’t remember much about having breakfast with Santa, but I remember what everyone remembers of those really early events…that Santa was a BIG DEAL.  And as I grew up, that never changed, the idea of Santa, the magic of Santa was always big in my family.  We got gifts from Santa well into adulthood.  Stockings were always stuffed with goodies, long after we knew who was doing the stuffing.  And in spite of all the changes we have gone through, one thing is still there…Santa.  And he’s still bringing us a little Christmas spirit just when we need it the most.