teapot1

teapot1

Saturday, March 31, 2012

April 1--A

A  Alzheimer’s Disease
 

People fear Alzheimer’s disease more than almost any other disease—with the possible exception of cancer—and with good reason. The fears that Alzheimer’s arouses are fundamental and existential. The disease takes away, one after another, a person’s memory, cognitive function, self-efficacy, ability to care for him- or herself, and even his or her personality. There’s no cure for Alzheimer’s, and the treatments that exist so far only work--when they do--to slow down the symptoms.


Paradoxically, this disease we fear is something that can’t even be definitively diagnosed. The characteristic plaques and tangles can only be positively identified on examination of a patient’s brain after death. A dementia diagnosis is the best that can be given.
 

I began this journey into the unknown with my mother three years ago. It began with a bad fall she had, resulting in her being hospitalized for four days. When we brought her home she didn’t recognize her own house. And this wasn’t a momentary thing. It lasted for weeks. At my wit’s end, I made an appointment for her with a neurologist at our state’s best private psychiatric hospital.


The neurologist looked at the brain scan the hospital had taken. He said that parts of her brain had shrunk. He gave her cognitive tests. Then he told her, flat out, “You have Alzheimer’s.” I was shocked and angry at such a blunt statement, particularly since I knew it was so difficult to diagnose. But it seemed to slide right over my mother. I guess one of the few blessings of this disease is that eventually you forget that you have it.


So we don’t really know what kind of dementia my mother has. I suspect it isn’t Alzheimer’s because her personality hasn’t changed. It makes it much easier for my husband and me that she doesn’t curse at us and accuse us of keeping her a prisoner in the assisted living facility, as some of the people there do. In fact, it seems to have brought her some kind of peace. My anxiety-ridden, worrywart mother now seems content, having forgotten all the losses in her life, including that of her son. So does that mean that her personality has changed after all, but in a more positive way? It’s a small thing to be grateful for nonetheless.


This month I concentrate my blogging on my experiences with my mother’s illness over the past few years. I don’t intend this to be a day-by-day chronicle of loss, deterioration, and sadness but a dimensional look at what her life and mine are like now, as well as how they were before this illness struck her, and even how in some ways I feel I’ve become a better person through this experience.  For one thing, I’ve now made helping Alzheimer’s research a personal cause. Last fall I participated in fundraising for the Alzheimer’s Association and was able to contribute more than $200. I now give a monthly donation and sent another in honor of my aunt who just passed away. I intend to find more things I can do for the organization or for individuals afflicted with this disease. Every little bit will help toward finding a way to eradicate this terrible scourge.


I hope you’ll follow me on this alphabetical journey through a new territory for me, and I hope that those of you who are also touched by this disease will add your own thoughts and stories on how you’ve coped with it.



47 comments:

  1. Beautiful and touching post, Elaine. My heart goes outj to all afflicted and their loved ones. I look forward to reading about your ourney with Alzheimer's.

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    1. Thank you, Linda. It is certainly a heartbreaking disease.

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  2. I'll definitely be following along. Your path is one that far too many people have traveled. I do hope a cure is on the horizon--Alzheimer's is an awfully difficult disease for both its victims and those who love them.

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    1. Yes, it sure is, Beth. I sometimes think it's harder on the loved ones, at least when the afflicted ones get to the stage where they're no longer aware of their disease. Thanks for reading.

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  3. This is a sad situation to be in. I would say I dread the idea of Alzheimer's more than cancer. At least cancer can be fought, and it attacks your body but doesn't rob you of who you are. I wish you well in your journey.

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    1. Yes, there is finally hope for people with cancer,and the success rate is climbing all the time. I hope we can say the same for Alzheimer's someday soon. Thank you for visiting.

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  4. Elaine partially I know what you mean, my grandmother has also this diagnosis and lives with my dad, and I know it is not easy. I have the same doubts as you do, her personality remained the same, she forgets things, has better days. The k you for sharing this, I will follow your posts, since I think I will learn a lot!

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    1. I'm sorry to hear about your grandmother, Claudia, and bless your father for caring for her. I wish him strength.

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  5. My father had a form of Alzheimer's, but instead of having some kind of peace with it, he got very frustrated about the things he couldn't remember or do. It brought on the most awful rages which was hard to cope with. So I really empathise with you. Look forward to your A-Z posts, and good luck with the Challenge.

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    1. Paula, until this year, my mother was getting very upset about the things she couldn't remember, most of all my brother's death. It was so hard on me when she would cry, "What's wrong with me? Am I losing my mind?" I thank God for the relative peace she has now. Thank you for your comment, and I'm sorry you had to experience this with your father.

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  6. 25 years ago, just before Alzheimer's even became a word on the dementia scene, I believe my grandmother had it. It was a devastating thing for her and her personality changed totally. I hope the recognition of this in today's world brings at least a little more comfort than the senility diagnosis my mother got regarding my grandmother. I look forward to hearing of how you and the family have coped and are coping with this Elaine. It takes such courage.

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  7. My mother was diagnosed with Alzheimer's in 2009, but we later believed it to be vascular dementia. We never told her she had it. It seemed to be triggered by the exhaustion of caring for my father - who was seriously ill at the time. Medication turned out to be her friend, but she sadly passed away from heart disease last February. My heart goes out to you - it's so difficult to be the caregiver. (((HUGS)))

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    1. Thank you, Lynn. I think you did your mother a kindness by not telling her. I'm glad the medication worked for her. I know it must have been hard on you to lose her to heart disease, but in the long run it may have been for her and you not to have had to suffer the kind of deterioration that AD brings.

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  8. Bless you. I know you're going through a tough time because I watched it with my uncle. During his early stages my father, his best friend, died. He repeatedly called the house asking to speak to him. We felt bad telling him he had died because for him it was like living the news all over again. So tragic!

    Joyce
    http://joycelansky.blogspot.com/2012/04/atoz-abducted-by-aliens.html

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    1. Joyce, I finally stopped telling my mother about my brother's death, as well as those of all her siblings. It was too hard on her and me, and I finally decided that she really didn't need to know. Thank you for your kind words.

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  9. Bless you. I know you're going through a tough time because I watched it with my uncle. During his early stages my father, his best friend, died. He repeatedly called the house asking to speak to him. We felt bad telling him he had died because for him it was like living the news all over again. So tragic!

    Joyce
    http://joycelansky.blogspot.com/2012/04/atoz-abducted-by-aliens.html

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  10. Bless you. I know you're going through a tough time. Shortly after my father died, my uncle was going through early Alzheimer's. He repeatedly called the house asking to speak to my father. We hated to tell him that Dad had died because for him, it was like hearing about his brother's death for the first time.

    Joyce
    http://joycelansky.blogspot.com/2012/04/atoz-abducted-by-aliens.html

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  11. I'm going to follow your journey--I know one too many people who've been affected by dementia or Alzheimer's. I'm sorry you are having to go through this with your own Mom. It can not be easy.

    Cheers, Jenn
    http://www.wine-n-chat.com

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    1. Thank you, Jenn. It is definitely not easy, but now that we have her in a good and safe place I breathe a lot easier.

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  12. You are right....this disease frightens me to the core! A very touching post!

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    1. It is a very scary thing to contemplate. The best we can do is follow the tips such as the Alzheimer's Association gives on their website to hopefully lessen the chances of getting it--and keep working and praying for a cure. Thank you for visiting and for your kind words.

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  13. You're right in that we all fear Alzheimer's. There's something so fundamental about our sense of self - and the loss of that. Your mother is fortunate to have a daughter to share the journey with her. And that she has found some peace.

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    1. Thank you, Stephanie. Losing your sense of self is a very frightening prospect. I may be lucky in that my mother is the first member of our family to contract this disease, and only when she was already ninety-seven years old; so I'm crossing my fingers that we don't have the gene in our line.

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  14. You're doing a wonderful service with your approach to the challenge, Elaine. Alzheimer's is something we all fear as we get older. I'll be very interested in hearing more about your mom.

    My challenge theme this year is a writerly wish list (with a few personal items thrown in). I hope to have a little fun with it.

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    1. Thanks, Pat. I hope that whoever does follow my blog through this challenge will learn something and that those also struggling with Alzheimer's or dementia will know that they're not alone. I'm looking forward to reading your blog, too.

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  15. Sounds like a hard road ahead with your mother. You have a good heart for taking care of her.

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    1. Thank you, Julie. I appreciate the kind words. The road has gotten a bit easier since she is now being cared for by professionals, but I still dread what may yet come.

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  16. A difficult journey, thank you Elaine for sharing it with us too.

    A-Z 2012 (#49)
    Bloggit Write A-Z 2012 - Poetry

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  17. I will be reading this daily Elaine. I send ((hugs)) to both you and your mom and pray for the peace she seems to have found to be permanent.

    Thank you for choosing to share this with all of us. We need to learn. ♥

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    1. Thanks, Jo, for your thoughts and hugs. I also pray that she will remain at peace.

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  18. Knowing your mother before this happened to her makes it all the more sad for me to read about. She's a charming delightful person. I am soo glad that you found so a great place for her to live and look forward to your thoughts this month.
    Pam

    Quig Land
    A Pirate Looks Past Sixty
    Pirate Knitting

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    1. Thanks so much, Pam. And I tell you now that having the support of my friends over the past few years has meant so much!

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  19. Alzheimer's is something I worry about since my dad had it. He died of pneumonia a little over a year ago. To me it's worse than cancer as you see it slowly take the person you knew away. He was a totally different person when he died. He couldn't communicate with us anymore, didn't recognize us. At the same time we were never really sure how much he still comprehended about what was going on around him. He would get angry and easily frustrated.

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    1. I'm so sorry for what you and your dad went through, Sherri. It must be so horrible when your loved one doesn't know you any more. We are lucky that my mom still does know us and is always glad to see us when we visit her. And I also wonder what's going on inside her and what she does understand. It's a hard thing to think about.

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  20. My grandmother died from Alzheimer's complications and now my father in law has it. It is a horrible disease that is scary. There is so much that is unknown about the disease and like most illnesses, most people are unaware about all the implications unless they have someone close to them that is affected. Good luck on your journey. Prayers for you both.

    Kathy
    http://gigglingtruckerswife.blogspot.com/

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    1. I'm so sorry about your grandmother and father-in-law, Kathy. Thank you for your prayers, and I send them back to you.

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  21. Hi again, Elaine. I dropped back by to respond to your comment questions. No, I didn't have an agent for the first mysteries because I hooked up with the editor at a conference--no agent needed. As for last weekend, yes, I pitched to an agent and got a request for materials. Keep your fingers crossed for me.

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    1. THey're crossed, Pat. Let us know what happens!

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  22. Sundowners, AMS: altered mental status OBS: organic brain syndrome yes all names and behind the mask of confusion is a heart that loved beyond measure. NOTEBOOK the movie...sobering, just like this blog.

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    1. What a beautiful line--"behind the mask of confusion is a heart that loved beyond measure." Thanks so much, Brenda.

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  23. Hi, I am a new follower from the challenge and I am looking forward to following you through this alphabetical journey of new territory. I will also pray for your mom and for you. You have such a tough road ahead and I don't really know what to say.

    My grandparents died at very old ages, but none of them (fortunately) suffered alzheimers. My dad is in his mid 80's and is very sick, but so far he does not have this illness. He does suffer from some form of dementia and the intensity and frequency is growing. I know from other people who have family members who have or had Alzheimers in the late stages of their lives how much it hurts the loved ones when they realize that their own parent or family member doesn't recognize them. I feel terrible for you and I wish you all the strength in the world . I will keep you in my thoughts and prayers.

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    1. Melissa, I'm glad that your grandparents lived to be very old without getting this disease. Your father may just be having normal age-related memory loss--I hope that's the case. Thank you very much for your thoughts and prayers.

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  24. We suspected that Mom had Alzheimer's over 9 years ago. My parents and I had come out to NY on vacation to visit my sister. I also had a job interview. When we got back home, she got lost in my neighborhood, where I had been living for five years. And my neighborhood was a circle with a street in the middle. I lived in the middle. It took us 8 years to finally get her some help and only because she ran away in the middle of the night. It is a very ugly road. You will stumble and fall and cry a lot. But you will also triumph. Good luck to you. I look forward to reading your posts. http://laughatalzheimers.blogspot.com

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    1. Andrea, your blog has been a great help to me, just knowing that someone else is going through this and has as much strength as you do and an outlook that I"m sure helps you. I will be following your journey as well. Thank you so much for visiting.

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  25. This is a terrible dreaded disease actually. I wrote about an article on my blog which is 5 dreaded disease that might affect creative which I guess should also include this too. Nice post on A, by the way mine B is posted now at GAC a-z.

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    1. Thanks so much for stopping by. I'll pay a visit to your blog, too.

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