I started pushing for a neurology appointment around October 2012. I didn't know why I felt neurology was needed but somewhere in my gut I knew that was the doctor he needed. My requests were flippantly dismissed. Our requests for a sleep study were also dismissed. Army care providers are jaded and assume first that everyone is faking.
A sleep study was finally approved in September 2013. At the initial visit the doctor called me into her office while Mikey was getting his appointment for the actual study. The doctor told me then that whatever was going on was neurological, not psychological. I told her I had been trying to get him in to see a neurologist but had had no luck. She told me to try harder. His tremors and dreams were of great concern to her.
By now he was in the Warrior Transition Unit with a nurse case manager. I went to him and told him what that Dr had said and was again dismissed. I asked each week. There was a particularly out of character violent episode in late December. At Mikey's next Doctor appointment I spoke to the nurse and told her what I felt was going on. She agreed with me. Finally! She sent a message to his primary care doctor who although dismissive of the notion of dementia made the referral to neurology.
Now, three weeks after that first appointment we know with no doubts. Never in my life have I wanted to be wrong about something so much. Diagnosed with dementia, age 45. We will learn soon if it is Alzheimer's, Frontotemporal or Lewy Body. All mostly the same, all treated differently.
Mikey is my world.
He is my best friend.
He is my heart.
He makes me a better person.
He completes me.
I am angry.
I am devastated.
I don't know what to do.
I don't know what to say.
When I do say it I might sound cold and robotic.
I might cry.
I might not.
I don't want to think about it.
I have to think about it.
I don't want to continue to mourn him while he is living.
I want to get past this stage of grieving so we can enjoy our last few years together.
I have to be patient with him. Sometimes I can't.
I have to walk away.
I have to drive him everywhere.
He doesn't understand that he can't.
He gets mad if he's told no.
I manage his medications.
I manage his life.
I can't manage my own.
He is aware of all these things. He just can't manage it himself.
He still cooks. Not so well and the stove gets left on or fires start.
He has to be supervised. Not babysat. Never treat him like a child. Simply be around and let him make mistakes and quietly clean them up.
Conversation takes more time. Sometimes the word he needs takes longer to come to him or it doesn't come at all.
Spelling can be challenging.
Some days you would never know anything was wrong.
Most people do not see him as having memory issues.
He still makes plans for the future.
I have to keep everything calm and quiet.
I have to keep myself in check because he will sense my mood and react accordingly.
I can't argue with him. His ability to reason isn't working.
He will cry. There is no reason. I hold his hand.
He will scream. There is no reason. I let him scream.
He will get aggressive. I don't know why. I stay away and let him throw things.
He acts out his dreams. I reassure him when they are scary or encourage them when they are happy.
He falls out of bed, or runs out of bed. He gets hurt a lot.
I get hit in his sleep.
We have two beds for nights when it gets really bad.
I don't like leaving him.
He doesn't like me leaving him.
I am tired.
He is more tired. He sleeps more. He dreams more.
He gets 0% deep sleep according to his sleep study. I let him rest as much as possible.
I will be glad when he is discharged from the Army. It is eating up time we should be spending with each other and loved ones.
He gets angry. Then happy. Then angry. Then sad. They angry. Then happy. In minutes.
He is still a gentleman.
He argues more.
He tells me the same stories more.
He doesn't talk about yesterday. He talks about yesteryear.
He has auditory and olfactory hallucinations. (hear and smell)
We still laugh together.
He jokes about his disease. I laugh at him. I can't laugh about the disease.
Sometimes it's hard to smile. Sometimes it's the only choice I have.
He said he will find a way to not suffer at the end. I want to scream no. I would feel the same.
He can watch the same tv programs and movies over and over and enjoy them just as much.
He likes to look at antiques.
He doesn't like to leave the house.
A decade was just the beginning. Fifty more decades would not be enough.
He feels time differently. Minutes feel like hours.
He is ready to go.
He is agitated.
He loves X Factor from any country.
He loves the Gaither's.
He has to wear a bracelet now. He sometimes gets lost.
He loves animals. He wants one of everything.
His dogs know something is different. They stay away. He hurts.
He gets sicker easier and more often.
He gets hungry. He doesn't eat even when he tries.
He likes fresh fruits and cherry danish.
He like cottage cheese now.
His behavior is unpredictable.
He has no energy.
He is apathetic.
He is impulsive.
He thinks I keep money from him or we have more than we do.
I can predict if it's going to be an emotional night.
He has more problems in the afternoons and evening.
He says I'm his angel.
My heart is breaking.
I have to keep the house neat so he doesn't trip and fall.
I am too tired to clean house.
He used to take care of me.
I don't think twice about taking care of him.
He says I don't deserve this. Who does?
I'm not going anywhere.
He will have to go into a home someday.
I don't want to let him go. I know I will have to.
He throws things. He feels guilty.
He doesn't mean to do the things he does.
There is no cure.
This doesn't go away.
This doesn't slow down.
His is aggressive.
He will argue even when you don't answer back.
He can write his thoughts easier than he can say them.
He doesn't deserve this.
Talking about Advanced Directives (end of life decisions) has to be done. It's hard. Planning your death when imminent is hard. Planning is even harder when he has a hard time making decisions. I will not make these decisions for him.
He is kind,
A great story teller.
He has Stupid Mikey stories. Stories that I want to record. Stories I'm going to try to record.
My heart aches that so long ago Mikey would always say that he felt something different was wrong. That his brain felt wrong. No one listened. Not even me. Had I fought harder perhaps he would have been diagnosed sooner. We would have had more time free from the Army to spend together. No, an earlier diagnosis would not change the outcome. Nothing in modern medicine can change the outcome. What it would have done is give us an opportunity to have the planning out of the way to focus on living.
Rick Phelps wrote a blog post about knowing. He too knew before anyone. I'm not saying to be paranoid but if you really feel something is wrong, no matter your age ask for specific tests that can help determine if you need more tests or not. http://phelps2645.blogspot.com/2014/01/dementia-you-will-know-something-is.html
We still plan on visiting Ecuador although the plan to retire there is no longer an option. We will be retiring near his family in Florida. I will need them.
I want to cook, sew, craft and garden again. I will. Soon.
He wants to go fishing. He talks about it often. I don't really care for fishing. He has family that is going to take him.
|His favorite color is pink.|
|He can be silly.|
|He had to show me there are rednecks in Iraq too.|
|He hates to fly.|
|Our first ball.|
|Sometimes he is grumpy.|
|He has met the Sergeant Major of the Army and was given a coin. He has several coins, this is favorite.|
|We love to dance to Margaritaville.|
|He has awesome friends.|
|Getting a coin from a Command Sergeant Major. His 1SG in background.|
|Singing and pointing at me. He won 1st place here.|
We are making him a memory book. Project Memories. His family and friends are submitting photos and a favorite story they share with him. Sometimes reading those memories makes me cry.
I long for the husband I once had. I mourn his loss. Sometimes there are flickers of him. As if it's just a ghost in the room. I dread this horrible disease getting worse and those flickers disappearing altogether. I fear the day he wakes up and doesn't remember me.
Others might never see what I see. They could question me and wonder "is it really that bad?" There is no way to see. Not unless you live it. It doesn't happen around strangers or at work. It does actually but we share a silent language and I see and feel his distress when no one else does. Once he feels we are safe he lets his emotions fly. It is hard not to take it all personally. Especially when words are directed at me. Mean words. Harsh words. Hateful words. Yes, I get upset. I lose my temper. Then as quickly as I can I try to gather my hurt feelings together, walk away and tell myself that is not my husband.