Coordinated Care

Well before the Alzheimer’s diagnosis, my mom began a gradual psychological decline. About 8 years ago, when it was finally to the point that her life was beginning to unravel, my brother and I knew we needed to do something and we knew we needed some help. We were struggling to diagnose and name what was going on with mom. We weren’t sure if it was bipolar disorder or delusional disorder or some combination of both.

A psychologist, who was a friend of my family and had known my mom for many years, helped my brother and I when we needed it the most. When we were scared and confused and in denial, he spoke to us about the uncertainty that was, and the chaos that was likely to be ahead, and he did so in very blunt and honest terms. I remember him saying, “Your mom is on the path to being one of the mentally ill people you see on the street.”

Bam…brick wall. I have remembered him saying that as if it’s an audio tape playing back in my head for almost a decade. It changed things for me. It changed the way I thought about my responsibility for creating structure and support. I knew my brother and I needed to prevent that from happening, and at the time I didn’t know how. That part has been unfolding ever since. But the goal was to prevent my mom from living into that potential reality.

He also gave me some of the best advice. He said begin to put away some money for emergencies and create a plan for what you will do down the road. I understand now that it was that advice that helped to shift my focus from trying to fix what was wrong with my mom, to trying to create a support structure around her to manage what was wrong with my mom. It was the beginning of my paradigm shift that helped me understand that there was something more I could do than just be angry about how unfair this all was.

I don’t even realize it till I stop and think about it, but when my brother and I talk now, we talk about the plan mostly, and not the disease. And I’m very lucky that I have a great sister-in-law who also has joined our team. We have internalized that we don’t have control over the disease. We have control over the support we give and the coordinated care we try to establish and provide. And at the end of the day, I take a deep breath and hope that the plans will work when we need them to.

And this week they did. My sister-in-law stepped in to take my mom to her follow up neurology appointment. One of the speech therapists at the nursing home has been monitoring my mom’s eating because she eats and drinks really quickly at meals and is getting choked. They have modified her diet and given her a new cup with a lid and straw that forces her to take smaller, slower drinks.

Since mom has been taken off one of the psych meds, she has been increasingly more difficult to redirect and on Wednesday she was so loud and disruptive she was making everyone really agitated in the dining room. The nursing home tried to get me on the phone but I was teaching. My brother stepped in and took the calls. The nursing home called the psychiatrist and got her in for an appointment that day. Since my brother and I were both two hours away at work, they took her to the appointment. The psychologist decided the grand experiment to see if she could go off the medicine was over, and she’s back on it.

A busy week. A stressful week. But one where we had a plan. And the plan worked.

Good Care

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…

Scanned Pics

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…

We’re back…Buttercup

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…

How’s Mom Doing?

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!