Wednesday, July 8, 2015

The spectrum of Alzheimer's

People who haven't had their lives consumed with Alzheimer's don't have a good understanding of the disease. Even those who have lived through the disease with a loved one may only see one end of the spectrum. And yes, there definitely is a spectrum.

For instance...

My mom has a friend whose husband has Alzheimer's. Like my dad, he would be considered in the last stages. For him, Alzheimer's has taken his mind and his memories, but he sits in a chair and watches television, or sits at the table and eats his meals. He follows his wife to his bedroom when it is time to sleep. He is docile. He is calm. He is kind. My mom even stayed with him recently, so his wife could go to a family cookout. Oh, how my mom wishes my dad were like this man.

This is one end of the spectrum.


There is another end of the spectrum. This is where you will find my dad.

My dad is in a men's, locked down, behavioral, dementia unit in a skilled nursing facility. I have heard men curse, and mumble, and I know some of them have thrown punches, including my dad. My mom watched as my dad punched one of his caregivers in the ribs one day. My dad is still strong. It must have been painful, but the caregiver smiled and told my mom he was okay. I watch these men as they get frustrated while they eat, frustrated when they spill drinks, frustrated that they are not understood because their words do not come out cohesively. I watch them stroll up and down the hall. Meandering.

They are not my dad. They straddle somewhere along this spectrum, but they are not necessarily at the other end as the previously mentioned gentleman. Many of them seem mild compared to my dad, although I am sure they have had their fair share of behavioral incidents to be in the behavioral unit.

My dad is at the far end of the other side of the spectrum.

The other end of a spectrum where some form of sleeplessness, pacing, insanity, delusions, hallucinations, and terror reside. This is what tortures me. I don't know what is torturing my dad, which inflicts the terror in his eyes, causing him to pant, tremble, sweat, move,

grab at the air,

grab at our arms,

grab at our clothes,

grab at what we cannot see,

sending a tear down his cheek. My dad does not cry. I've never seen him cry. Is he in pain? Are they tears from fear? Are they tears of misunderstanding? Why is he so panicked?

God, please...please help him. Show us how to help him. Show us how to help him calm down. Show us how to show him reality. Help us bring him back. I feel myself start to panic because I cannot help him.

And then, I pry his fingers off the arms of my brother as we rush out of the room with tears streaming down our faces. We sit in the car and cry. Tears flow every time we leave our dad.

I call my mom. As usual, she hurries in to check on my dad. His medicine has kicked in. He is calm. She feeds him lunch. His caregivers help get him to his bed. She tucks him in, and kisses him, and tells him she will be back soon. He sleeps. Finally, he sleeps. His doctor has found two medications that help him. One helps him sleep. The other is an anti-psychotic. It helps him calm down. It alleviates the hell he is living in at that moment. In those moments of sheer panic and terror, I believe it is close to the feelings that people experience in hell.

I find myself praying, "God, please take him!" I cannot bear to see him live in such torment and fear. I did not expect this. I did not know how far this spectrum could go.

#prayforacure #endalzheimers

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