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.

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