Alzheimers, Down Syndrome and the Demons in my Closet

Several years ago, I lost my mom to Alzheimers. This is a difficult, debilitating disease that can be very destructive to families. Much has changed in the nearly 4 years since writing this, but the message of hope lingers in my heart. I truly hope to see Mom again one day.

If you’ve ever known a loved one who’s suffered with Alzheimers, then you know a special kind of pain. Watching my mother be awake and active with it for 6 or so years, then watching her in a home was one of the most painful things I’ve ever witnessed. The care facility told us that she was combative when awake, so they mostly kept her drugged up.

That was really hard. Seeing my bright, passionate, firecracker mom in a stupor, unable to even see the grandchildren she adored, changed me forever. I don’t even know that she ever really knew my youngest, Zoe. She passed away when she was only 3 years old, after many years of battling Alzheimers and cancer.

The sad things is that Alzheimers steals a person’s life, identity, and nature. As my sister used to say, Mom didn’t have the nice, sweet, “movie version” of Alzheimers, where she’d forget that it was 2012, and who you were, and maybe wander. Mom had  paranoid delusions of people who meant her harm living in her house, that her husband wasn’t her husband but an imposter, that someone was stealing all her stuff when she was throwing it away. She destroyed her own clothes, had nasty fights with Dad, and lost her wedding and engagement rings. She disintegrated like this little by little.

It’s a hard thing to deal with, for loved ones. It took a real, physical toll on my dad, who insisted on taking care of her, despite the fact that he was nearing his 90s and not exactly in perfect health. And my beloved sister and I had the worst falling out of our lives, because of a misunderstanding in her care. It destroyed me when I had to go to her house every other week and try to force feed her medication, but it was no less painful to put her in the “best” local Alzheimers facility which was far for both myself and my sister, and walk into the smells, the sounds and sadness of that kind of institution every other week either.

When she died (a long, drawn out thing caused by cancer), I was relieved. I believed and still do that she went to heaven and is at peace and happiness with God. But it wasn’t always this way. About 6 or 7 years ago, after I had witnessed the terrible realities of how Alzheimers had ravaged my mother’s brain, I fell into despair. One day in particular, I was at home while Amelia was napping, and the pain of this  disease hit me. I was not just in agony for my mother, it was terror for my own future mental health and for Amelia, because many people with Down syndrome get early onset Alzheimer’s. As a late-in-life mom, I may not be able to take care of her should this happen. It was this tight, under-the-skin pain that I experienced one afternoon, so raw and painful it drove me to tears. It was the demon in my closet – a cloaked phantom called Alzheimer’s whose calling card was on my table in my very family.

As the tears fell and I pleaded with God for help, a warm, soothing feeling came over me. Remember when you were little, the first time you skinned your knee, and it hurt like the dickens, and your mom came over, fixed up your knee, and gave you a hug to make it better? It was like that, only bigger, better, deeper. My trust, however, was not what it is today, and a few minutes later, I was at it again, crying, pleading, wishing. After a little while, I felt that comfort again.

This went on for a while, maybe an hour or two, and at the end of it, I had the sense to realize that this must have been the Holy Spirit. I was not yet a Christian, just seeking, but God does things in HIS order, not yours or mine, so in a real sense, I met God’s Spirit a bit before I met Jesus. (I have a knack for doing things backwards!) I also came to a kind of truce with this, not exactly peace or acceptance yet, but a sense that things that were not in my control, were in God’s control, and maybe I had less to worry then I thought.

 

Fast forward to today. I have no illusions about Alzheimers: it is a real danger or possibility for me or my girls, but I do have is the knowledge that that demon in my closet is gone. The specter of Alzheimers has no hold or terror or control over my brain the way it used to. The thing is, I’ve learned to trust God, and I know that even if, right now, I boxed myself up in a hyperbaric chamber, and ate nothing but whole foods and supplements the rest of my life, there is still no guarantee I can prevent this disease. The same is true for my children, and I can pray, but I can’t say what God will or will not allow to come into our lives.

I can say that I have power over that fear, and that’s why it’s not lurking in my closet anymore. I’ve banished it, and learned to enjoy this day, this present, no matter what my circumstances.

Sadly, this life is temporary, fleeting and really crummy especially when you are dealing with a degenerative disease that has no possibility of a good outcome besides death. With my faith, I know that death is not the end-all of things, merely a short beginning, with a lovely prize at the end of it if – and that’s the kind of hope that gets me through the nights when fear lurks at my door.

And if I’m wrong, so what?  I’m happy now, fear-free now, and who’s going to tell me I’m wrong if I cease to exist?

UPDATE, 4/4/16: I wrote this several years ago, but I’m happy to say that thanks to the Down syndrome-Alzheimers link, researchers are making lots of progress – I hope – on treatments and causes of this disease. Here are some articles on the latest advances:

• Alzheimers Cure – Has Stanford Found the Missing Link? 3/31/16
• Innovative Minds Find Unique Ways to Help Alzheimers Patients 
• Down Syndrome is Thought to Hold Clues to Alzheimers 1/21/16
• Vaccine Targets Alzheimers Disease-like Characteristics in People with Down Syndrome 1/13/16
• MIND Diet May Help Prevent Alzheimers 

Originally published 7/10/12