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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.

Source

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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  • mperrottet profile image

    Margaret Perrottet 4 years ago from Pennsauken, NJ

    I've been fortunate in not having had to deal with this. It must be horribly painful to watch a loved one decline with this horrible disease. I'm glad that you have help - sounds like you really need it. My heart goes out to you.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    mperrottet, thank you so much. I hope you never have to know this disease in person. We are fine. Our family is strong and we communicate well. We love each other and are in it for the long haul. So many are not and for that, we feel very fortunate. The most difficult thing about Alzheimers, and the most necessary, is to learn to separate what you are feeling from wht your loved one is feeling. When my heart is breaking over my Dad's inability to do something, he is totally oblivious. That is the positive side of Alzheimer's. I write about this disease not out of self-pity or the need for comfort but because there are so many who will be touched by it and not have the family I have. I just hope I can help someone. Your message was very caring and I sure appreciate it.

  • billybuc profile image

    Bill Holland 4 years ago from Olympia, WA

    You know my situation with my best friend. This is truly a heartbreaking disease. Daily I text my best friend ten, fifteen, twenty times...often repeating information.....we try to carry on the way we once did, but more often than not it is a one-sided conversation and friendship. Still, Jim knows that I am here....and when he goes to that happy place, I will know that I was with him through it all, and gave him the dignity he deserves.

    This is such an important hub; I hope thousands read this, for one day they will have to deal with this ugly disease.

    Thank you for writing this, Linda!

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Bill, no one understands this unless they have been touched by Alzheimer's. In the beginning, most try to force memories on the person who has it. Then, they will argue to prove they are right and that person is wrong. It only makes things worse. Once we learned to just answer the repetitive questions again and again, or, to change the subject, life was a lot easier. The one thing I want to scream at people is "dignity, dignity, dignity". You understand this and are keeping watch over Jim and his right to maintain some dignity. That, is a true friend. Thank you for your heartfelt comment.

  • carol7777 profile image

    carol stanley 4 years ago from Arizona

    I read this as I feel we all have to be aware of this disease. I do hate labels as it makes things even worse. I have seen the disease in action. Both my parents died before getting this. I know it lurks out there and hopefully we will find a cure. Voting up and sharing.

  • wabash annie profile image

    wabash annie 4 years ago from Colorado Front Range

    Thanks for writing about this topic. Many things make more sense now.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Thanks for reading it Carol. No one is immune. You may one day have a neighbor with it, or an in-law, a boss, or a friend. It's possible to cope if you have the tools and information. I appreciate your reading it.

  • lrc7815 profile image
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    Linda Crist 4 years ago from Central Virginia

    Hello wabash annie. Thank you for the visit. If this was helpful to you, then I am happy. If our experience makes it easier for one other family, then it is worth it.

  • carol7777 profile image

    carol stanley 4 years ago from Arizona

    You are so right and I am back to give you credit for writing about this. I know how painful it must be with your father...When you have distinct memories and they have become distorted. I have a good friend whose husband is a victim and her life is so difficult. I have so much empathy for those dealing with this. So we pray there will be a solution. Again my hat is off to you.

  • lrc7815 profile image
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    Linda Crist 4 years ago from Central Virginia

    Thank you Carol. Your kind heart warms mine.

  • Louisa Rogers profile image

    Louisa Rogers 4 years ago from Eureka, California and Guanajuato, Mexico

    Linda, the level of detail you shared really helped me 'get' what Alzheimers is like for a family. I have not had it in my family. Years ago a writer friend's husband had it and she wrote deeply personal, devastating stories from a wife's perspective, that eventually became books. So I heard her observations, but otherwise it's been something somewhat remote. This hub is so clear and helpful, thank you. Voted up and useful, I'll share.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi Louisa. Thank you for reading this one and for letting me know it helped you to understand this disease a little better. When my Dad was diagnosed, the doctor told us he would not die from Alzheimers but that he would die "with" it. We were relieved. At the time, we had no idea what living with it would mean to us. My hope is that in writing about it, someone else migh find comfort in knowing that someone else has been there and, that they will reach out for help when they need it. Thank you for sharing it.

  • Georgie Lowery profile image

    Georgianna Lowery 4 years ago from Lubbock, TX

    Alzheimers is one of the things I fear the most. It doesn't run in my family, but it frightens me all the same. Thank you for writing this and shedding some light on this dark subject.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi George! I've missed you.

    It scares me too, especially now that we know it so well. My brother and I laugh every time we can't remember something and blame it on early signs. But, it's really not funny at all. We have strange coping skills. lol

    I have no fear of death but I am terrified of losing my dignity. Isn't that crazy?

    Thanks so much for your visit and comment. Hope things are well in your world.

  • Daisy Mariposa profile image

    Daisy Mariposa 4 years ago from Orange County (Southern California)

    Linda,

    Thanks for publishing this very important article. Everyone should be aware of this terrible disease and know what to look for in their loved ones.

  • JayeWisdom profile image

    Jaye Denman 4 years ago from Deep South, USA

    Linda....Alzheimers already touched me, in a big way. Not one, but both, my birth parents succumbed to the disease. My mother lived her last three years with me, and I was her primary caretaker, though I had to hire help. Alzheimers requires day and night observation and care, and one person can't do it all. It was fortunate that Mom had enough--just enough, as it transpired--assets left to help with her care those final years.

    I count myself fortunate that I was retired and able to be with her for this period in her life. When she was diagnosed, we had a talk afterward, and she was very frank about not wanting to up-end my life. However, as the disease took more and more of her memory and abilities, our relationship grew even stronger. One of the good memories to which I hold on is that on the day she died, she still recognized me and those of our family and friends whom she saw most frequently. Since her heart gave out, she never reached the "vegetable" stage, nor did my father (who did not live with me) because he had end stage kidney disease.

    Those other diseases were blessings in disguise because they allowed both my parents to pass from this life before their entire cognitive ability (and dignity) was stolen from them. My heart goes out to those people who face the worst that Alzheimers can do. I hope everyone reading your article will support AD research with donations.

    And here is where I share my greatest fear: that I, with both parents diagnosed with this monstrous disorder, have a genetic pistol loaded and pointed at my brain. The genetic factors plus the two concussions I sustained in my lifetime are all "points" that add up to make me high risk for AD. I read everything I can find about new research and treatments, hoping that something that can reverse AD will be found while it might still be helpful for me if I get the disease. It's obvious that by the time symptoms surface, the disease has already done a great deal of damage to the brain. Research is vital to stopping the terrible disease of Alzheimers.

    In the meantime, I use my mind as much as possible in the hopes that keeping the brain "muscle" flexible might stave off memory loss and/or dementia.

    Great hub, very useful to those who have been touched by AD and those who haven't. I wish the best for your dad, and for you and your brother. It isn't an easy road to walk. Your family is, indeed, very blessed that friends and neighbors do pitch in to help in many ways. I think one thing you pointed out in your article that is so important (but which the average person not yet touched by AD doesn't consider) is how helpful just a little respite is for a caretaker. It doesn't take much to help someone struggling with the disease, either personally or that of a loved one.

    Voted Up, Useful, Awesome and Interesting.

    Jaye

  • profile image

    Adama Gidado 4 years ago

    Hi Linda, you have shared a touching yet inspirational hub. This is something that is with all of us and people like you encourage us to move forward and do the best we can for our family and loved ones. Thanks for keeping hope alive.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Daisy, thank you so much for your great comment and for promoting this one. I hope it helps someone else.

  • lrc7815 profile image
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    Linda Crist 4 years ago from Central Virginia

    Jaye, I read your comment with tears streaming down my face. I understand your fears and, share them. You did it alone, didn't you? My heart aches for you. It is so very hard. You talk about the respite needed for the caregiver. I cannot stress that enough. My Dad was fine, until , my Mom had a stroke in 1999. He is a saint, and would not let anyone help with her care and rehabilitation. He stepped up and did everything from bathing her to the laundry, to housekeeping and helping her with hygeine and exercise. It was grueling for him but he loved her so much and wanted to do it all. The stress was immense and about five years later, we started noticing the changes. I am convinced that the stress of worrying about her coupled with the physical and mental stress brought on his rapid onset of Alzheimer's. So yes, I am a strong advocate for giving the caretakers a break. I think it is crucial and the most important thing anyone can do to help.

    Thank you Jaye, for sharing your personal journey. I feel like we have a bond now that nothing can destroy. I will keep you in mind anytime I learn something new and will share it with you. Like you, I read everything I can find on AD. Do you have an account on Google+ or Twitter? There are several resources there that I keep my eye on.

    I appreciate you, who you are, and that you have lived through this beast. Let's keep in touch!

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hello Adama! Welcome to hubpages. You're going to love it here. Thank you so much for reading my hub and leaving a supportive comment. As long as there is breath, there is hope, right? :-)

  • Louisa Rogers profile image

    Louisa Rogers 4 years ago from Eureka, California and Guanajuato, Mexico

    Linda, I shared this on my FB page and a friend sent me this link by Mark Bittman about the possible connections btween Alzheimers & diabetes, and the idea that we may have more control over the disease than previously thought.

    http://opinionator.blogs.nytimes.com/2012/09/25/bi...

  • JayeWisdom profile image

    Jaye Denman 4 years ago from Deep South, USA

    Thanks for your kind response, Linda. AD is a beast, and I join with you in hoping to defeat it. I'll also share with you anything new I learn about research and treatments. My heart is with you and your family in battling the beast to help your dad. Jaye

  • mary615 profile image

    Mary Hyatt 4 years ago from Florida

    What a heartbreaker. One of my greatest fears is that someday I may have Alzheimers Disease . One of my friends' father has it and she says not to feel sorry for him because he is completely unaware. It's the family that suffers.

    I know how you must miss "your old father" and want him back.

    I voted this Hub UP, and will share.

  • teaches12345 profile image

    Dianna Mendez 4 years ago

    My father had a mild case of alzheimers just before he passed away. It is scary. Once he drove over 10o miles to another state. We all were horrified trying to locate him. Thank God a state trooper found him so that we could pick him up and bring him home. Thanks for sharing from your personal experience, much to learn from your advice. Blessings.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Louisa, thank you for linking to the article. I have read a little on that subject and it makes sense. I haven't been able to make the link in my Dad's case. He grew up poor and his family lived on canned/fresh vegetables from a family garden and meat. Dad had a minor cardiac problem in the 60's and Mom put him on a strict low-fat, low sugar diet. They have eaten that way ever since. Dad does have an aversion to hard candy. lol There was never candy around as a child and he loves it and will secret it away so no one knows how much he has. But, his blood sugars are normal and always have been. So, I can't help but think his is related more to the stress of my mother's stroke. Still, the diabetes link makes a lot of sense. I have bookmarked the article and really appreciate you sending it.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi Mary615. Thank you for your kindness. Your friend is so right about the person who has Alzheimer's being unaware. In many ways, that is a blessing. My best to your friend and her family. Thank you for caring.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    teacher12345 - hi! Thanks for reading and sharing your story. That must have been horrible, worrying about your Dad and not knowing where he was. I can only imagine. This is a frightening disease and I do hope that others will benefit from our experience. Then, it will not have been in vain. Thanks for caring.

  • Angie Jardine profile image

    Angie Jardine 4 years ago from Cornwall, land of the eternally youthful mind ...

    Been there, lrc …

    I know what you are going through and there is nothing I can say that would not sound facile or patronising. None of those hippy dippy aphorisms we all like to post to lift our spirits and make us feel good apply here.

    I am usually an upbeat, glass half full person but my mum developing Alzheimers before she died showed me that this is the curse of the 21st century. Most of the time she knew me but there were times when she forgot who I was and then I felt very threatened and fearful.

    When your dad is in a happy haze you are lucky. It may be hard for the family but it is a good place for him to be in the circumstances. Give thanks for the happy haze days.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Angie, I can tell you've been there, done that, and bought the t-shirt too. We are extremely thankful that Dad is stuck in his happy haze. We cope, don't we? We do the best we can, that's all. I do dread the day that Dad doesn't know me. I think that's when I will crumble, but, only for a brief time because I know he would not want me to be weak. I will do what I can because of and for him. I feel and know your pain, at least some of it. And I thank you for keeping it real here. I really do!

  • bravewarrior profile image

    Shauna L Bowling 4 years ago from Central Florida

    Linda, this is so informative and personal. One of my favorite aunts died a few years ago of Dimentia. That's the same thing, right? It broke my heart to hear of her failing with regard to cleanliness, forgetting to eat, but always had to have her cigarette! My Aunt Polly was also my Godmother. Uncle John followed her a year ago, but thankfully, he died of old age. He was 89.

    The word needs to be spread of this disease. As you say, most everyone will deal with it on some level.

    I'm sorry you are going thru this. I can't even begin to imagine the heartbreak you are experiencing first hand. God bless you and your family, Linda.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Shauna, your message is so sweet. Thank you. I am sorry about your aunt. Dementia and Alzheimer's are very similar. My family is really lucky that we are all sahring in the care and, that it hasn't become a 24/7 task yet. It will and probably within the next year but for now, it's manageable. I have a friend whose husband was a dentist and developed early onset Alzheimer's. He is in his mid 50's and doesn't communicate anymore. He follows her like a puppy on a leash. Bless her soul though. She treats him as if he was the same man she married and talks to him as if he was engaged in the conversation. Can you imagine how awful that must be? That's why I wrote this hub. These care-givers have to have a break once in a while and it has to come from someone they trust.

    Thank you for your sentiment. It meants the world to me.

  • gmwilliams profile image

    Grace Marguerite Williams 4 years ago from the Greatest City In The World-New York City, New York

    This is an extremely poignant article. Those of us who have parents with Alzheimers have seen their parents progress from lively, thinking people to shadows of their former selves. Nothing is more heartwretching to a child to see a parent becoming totally helpless. It breaks a child's heart. My mother has Alzheimers and I feel as I have lost a friend. She is no longer who she once was-a vibrant and alive woman. She is in a nursing home, not knowing who she is. It breaks my heart when I see her. Each time I see her, something dies in me each time.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Oh gmwilliams, I am so sorry you are living this nightmare. It is so, so hard. Until you are living it, you cannot understand. My Dad maintained at a high level of functioning for about three years but is declining rapidly now. Like you, a little piece of me dies each time I am with him. It has been said that Alzheimer's is the "long goodbye" and it is so true.

    Thank you for sharing your situation with me. Sadly, we belong to a club that is growing in numbes.

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