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About Alzheimers - The Decision, Fear, And Grief

Updated on December 21, 2014
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Linda lives in the foothills of the Blue Ridge Mountains in central Virginia. She lost her father to Alzheimer's disease in 2015.

Alzheimer's Disease - the light grows dim and the fog rolls in.

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WAIT!

Don’t go.

Please stay and read this. If you don’t know about Alzheimers, one day you will. It will affect you. It’s just a matter of time.

Alzheimers is part of life now; sad sometimes and joyful at others, but always part of our life. For the past three years, my Dad’s disease was fairly stable. He functioned well and only experienced some short term memory loss. In the last six months, everything has changed. His progress down that slippery slope has increased in speed and we are losing him, a little every day.

This disease forces a family to make hard decisions and recently, it feels that we having to make the decisions we never wanted to make. Each decision is agony. There are moments in each and every day when I am overwhelmed with fear and grief over an insidious disease that is stealing my Dad. Some days I fight the tears and on others my grief is so profound that it turns to anger. It was not supposed to be like this. Not now. Not ever.

You can't escape the facts!

  • 5.4 million Americans are living with Alzheimers.
  • Alzheimers is the 6th leading cause of death in the United States.
  • Alzheimers is the only cause of death in the top 10 that has no cure and no preventative treatment.
  • One in eight older Americans will be diagnosed with Alzheimers.
  • $200 billion will be spent on Alzheimers care this year alone.

The numbers are staggering and growing. If you are over 45 years old and know eight people over the age of 65, you will be affected by Alzheimers. And, if you live in the United States, the care of a loved one with this disease can be costly.

The Values My Dad Instilled In His Children

  • Honesty
  • Integrity
  • Cleanliness
  • Respect for Others
  • Service to Community
  • Patriotism
  • Kindness

Now that I’ve gotten the numbers out of the way, I want to tell you about my Dad. He is my rock. Or, he was. He was always there for me, no matter what folly I involved myself in, he stood by me. He was the first to arrive if I needed something fixed and the first to tell me he loved me when I was unlovable. Dad taught me to treat others with respect and to value integrity. Dad was a quiet man but a giant of a man in my eyes. Kind, generous, and smart, he was a man who never met a stranger. His sense of humor drew kids to him like a magnet and he had a way of encouraging us to do the right thing, no matter what. Dad applied logic to every situation and that made it hard to argue with him. That, was the Dad I knew.

There is a new Dad in my life. He looks like my old Dad, but I don’t know this person who is living in my old Dad’s body. He may look the same but he is nothing like my old Dad. I know he is my new Dad but I will never really know him because he changes almost daily.

The medications that had helped to slow the progression of Alzheimers are no longer working as well as they once did. If you haven’t had the experience of Alzheimers Disease, let me tell you, it is heartbreaking. For three years, we lived with the memory loss. It wasn’t a big deal. Dad repeated himself a lot and asked the same questions over and over again. We dealt with it by simply answering him as if he had never asked. Sometimes it was even funny.

New Challenges That Aren't So Funny

Driving

When Dad had a minor fender bender a few months ago we realized it wasn’t safe for him to drive. We had the conversation with him about not driving. He was angry but eventually accepted our decision to protect him and others on the road. In hindsight, I think we misinterpreted his acceptance. Dad simply lost his initiative. If no one asks him to go somewhere, he doesn’t think about driving. Things have changed.

Dad is now making references to driving even though he had not driven in months. Somewhere in that tangled web in his mind, he still thinks he is driving. For now, we are not arguing but we are watching carefully, to make sure he doesn’t get in the car alone and drive away. We know he won’t make it home.

Grooming:

My new Dad doesn’t like to shave or bathe or cut his fingernails or hair. My old Dad would die if he saw himself looking this way. The new Dad doesn’t care. In fact, he is defensive about his lack of interest in grooming. It’s part of the disease and it breaks my heart. My old Dad was meticulous. He dressed well every day, even when he wasn’t going anywhere. His fingernails were always clean and trimmed to perfection. Once or twice in my lifetime he grew a beard or a mustache but my Mom hated it so it never lasted long. My old Dad would never allow himself to be seen with a three day growth but this new Dad, couldn’t care less. I forced him to get a haircut last week and he is still mad at me. It’s funny how well he remembers that but can’t remember how bad he looked.

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Hallucinations:

My new Dad thinks he has a cat - today. Yesterday he thought he had a dog. He has neither. In fact, it’s been over fifteen years since there was a pet in the house. But yesterday he searched for the cat all day, accusing my mother of letting the cat get out of the house. This is frightening, the part of Alzheimers that generates real fear. Has my new Dad really seen a cat (in his mind) or, is he remembering a time long ago when there really was a cat? We ask ourselves how we will know what is hallucination and what is old memory. It is not uncommon for Alzheimers to progress to the hallucinatory stage. For now, we wait and watch in fear as this could be the beginning of something that will force another painful decision.

Detachment:

Thankfully, my new Dad is stuck in his happy place. He is so stuck that he no longer experiences emotion over sad things, not even the death of lifelong friends. My old Dad was a loyal friend and maintained friendships as if they were precious jewels. He was a good friend, a friend you could count on. My new Dad doesn’t have friends, at least none that he cares about. They have become nothing more than names in his clouded memory. He might recall a story about them from decades in the past but it is without emotional attachment today. It must be a lonely place but he is not aware of the loneliness and I guess that’s a blessing in disguise. The day will come when neither my new Dad or the old Dad will know me and I will know real loneliness for the first time in my life.

Meals:

Adequate nutrition has not been compromised – yet. My old Dad still joins us at the dinner table and enjoys eating. But the new Dad joins us too and he needs a little help. The new Dad doesn’t quite remember what to do with food. He needs us to place the butter in front of him and suggest that he butter the bread we place in his hand. This new Dad looks at the container of coleslaw and asks “What is this?” and “What do I do with it?” or “Do I have some of this?”. The new Dad eats things that the old Dad would never have touched. My old Dad would never have eaten a green pepper but hey, this new Dad will eat anything.

The jouney can be lonely but it doesn't have to be.

This may all seem like emotional psychobabble to you but I want you to understand how Alzheimers can and will affect you – one day. The odds of someone you love getting this disease are significant. It is painfully personal to me but I hope that in sharing our story, others will not feel so alone. None of us are alone but it sure feels like it sometimes. We have to help each other.

Every family who is caring for someone with Alzheimers needs help and a break once in a while. If you are fortunate enough to not be one of the 5.1 million families who are dealing with the effects of Alzheimers, maybe you can reach out and offer a hand. The smallest gesture means so much. Your help may make be the one thing that allows a family to keep their loved one at home for just a bit longer.

We need each other to do this.

We have wonderful friends and a supportive extended family. Our family has been blessed by the kindness of many. These are some of the acts of kindness we have experienced.

  • Neighbors visit to entertain my Dad and give my Mom a welcomed break.
  • Members of the church prepare an occasional meal and deliver it.
  • A friend volunteered to clean the house twice a month.
  • Another neighbor watches as Dad takes a walk so that Mom doesn’t worry that he won’t find his way back home.
  • A niece does the grocery shopping each week.

We have also contracted with someone to take care of the yard. My brother takes care of the banking and bills, and I take care of the medical needs and doctor's visits. We share the responsibility and it makes it easier on all of us.

These are the things that allow us to keep Dad at home a bit longer; in the home he still loves and vows never to leave. We cannot take this journey alone and we are so grateful for all the help.

Reach out, would you? Would you reach out to someone you know who is dealing with Alzheimers? They need you. They need your help. They need to know they aren’t alone.

© 2012 Linda Crist, All rights reserved.

Read more of my hubs here.

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