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Alzheimers Disease - Coping When The Fire Starts To Burn Out

Updated on June 9, 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.

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Sometimes, no matter how hard you try to avoid it, you just have to deal with reality. When you would rather be writing one of those creative masterpieces, the practical screams to be written. Something deep inside you understands that the practical might help someone else. You may not know who they are or what their circumstances are but you know you have something in common and that if you tell your story, those that need it will find it.

When I woke this morning, there was a light dusting of snow on the ground. Even the slightest of snows seems to make the world a bit more quiet and peaceful, as if the world has been wrapped in a blanket and settled down for a nap. In those first few moments, I thought I would write today about that quiet peace and the pleasure I find in the changing seasons. But no, it is not to be, not today. There is another story screaming to be told. It is a story of Alzheimers disease and how it feels to watch the fire burn slowly out in a loved one.

Sharing the journey

The past few days have been tough and yet the lessons of how to live with my Dad’s Alzheimers keep coming. For anyone living with Alzheimers, each day is a challenge and for the caregivers, an opportunity to learn one more trick to make things easier. Caregivers rarely make it through a day without looking to the Internet for more information that will make coping a little easier. And yes, sometimes we even turn to the Internet, hoping to read a story that will help to make us feel a little less alone.

Sitting down to write this morning, I thought about all the stories shared by others that have helped our family cope. As much as I would enjoy taking a break from Alzheimers today, I also feel an obligation to keep writing hubs about our experience, in the hope that someone, somewhere, who is feeling alone, will find this article and be comforted by something I’ve said. And isn’t that why we write?

Understanding and Communicating

Our family has lived with Alzheimers for three years. The first two years were fairly easy with the worst of the disease being short term memory loss and repetition. In other words, my Dad couldn’t remember what he did five minutes ago but could remember everything from his childhood. The repetition came in the form of him asking the same question over and over and over again followed by the same story over and over and over again. It is exhausting but eventually we learned some tricks for handling it. But after three years, we are only beginning to understand it.

Communication:

The sooner a family learns that they are not going to change the memory of someone with Alzheimers, the better for everyone involved. Caregivers are the ones who have to change the way they communicate. It is the only way to survive. Follow these steps and make life easier for everyone.

  • Speak in short, direct sentences.
  • Make eye contact and use touch to connect when speaking.
  • Pause after a sentence to allow a response.
  • Use positive, encouraging words and, smile. It is reassuring.
  • Stop arguing. You cannot force your reality on an Alzheimers affected brain.
  • Resign yourself to answering the repetitive questions, or, find creative ways to change the subject.
  • Use compliments and praise to help maintain a sense of self-worth.
  • Walk away when you are frustrated. Your frustration will only cause your loved one to retreat into the Alzheimers World further and faster.

Like our family, you probably read everything you can find on Alzheimers disease and still find it hard to understand. You may question why you have to change so much and feel angry that the person who has the disease doesn’t (or can’t) do some changing too. And then one day you read something that makes it click. This happened recently in our family. I read an article that explained the Alzheimers brain as…

"First in, last out… last in, first out."

I had to think about it for a bit but suddenly it clicked. The Alzheimers brain is like a box that becomes full. No matter how much you would like to squeeze one more item into that box, it isn’t going to happen. If you try, it either falls out or pushes the last added item over the edge. The Alzheimers brain maintains the first memories (of childhood, first jobs, etc.) but cannot hold on to new memories.

It was such a simple explanation but it helped us to understand. And with understanding came patience. Thank you Carole B. Larkin for following your heart and writing an article that finally ended our struggle.

Daily Activity:

It is easy to underestimate the ability of someone with Alzheimers once communication becomes difficult. Do not mistake their silence or inability to find appropriate words as their being unable to perform simple tasks. There is still a feeling, caring person locked within the walls of silence and jumbled words.

  • Your loved one needs to be engaged and involved in your day to day life.
  • Identify simple tasks they can perform and provide short, clear direction to get them started.
  • Create a routine and stick to it. It reduces the stress of trying to remember.
  • Don’t mention appointments until it is time to get ready for them.
  • Do not take angry outbursts personally. Try to shift the focus to something positive.
  • Discover things that bring pleasure to your loved one and spend some time in that activity.

Safety:

If you are going to keep your loved one at home, you must be responsible for keeping them and others in the home safe. Many home health care providers can do a safety assessment of your home and help you create a safe environment. Until that is done, there are some basic things you can do.

  • Help your loved one maintain grooming (i.e. brush teeth, shave, bathe) to maintain health.
  • Remove all obstacles in the home that create a risk of falling.Know when it is time for your loved one to stop driving.
  • Be alert for signs that your loved one could become violent and harm themselves or others and remove or lock up guns, knives, etc.
  • As a family, make a plan for handling emergencies, before they occur.

Prepare for the Future:

Wanting to keep your loved one at home is admirable but we all have to prepare for that day when it is no longer possible. Face it because it is the reality.

On a recent visit to our family physician, the doctor asked if we had visited assisted living facilities yet. Of course, the answer was no because we want to keep Dad at home for as long as possible. The doctor explained that we could not keep putting this off because most facilities have a waiting list and therefore, we would need to decide now, which facility was best for us and put our names on the list.

It would be so much easier to avoid this subject but we know the physician is right. He advised us to visit several facilities as a family and talk with the administrators at each one, explaining that It is important to have a good relationship with the facility. Our choice of a facility should be based on trust and personal relationship with those who will become my Dad’s primary caregiver.

Unless you have been here, you cannot appreciate how hard it is to even think about trusting someone else to care for your parent. After all they have done for me, it feels like a betrayal, like giving them away because they take too much time. But that is not the reason. There comes a time in the progression of Alzheimer’s when the risks are just too great for independent living. Safety and health become more important than personal feelings. It sounds good doesn’t it? Trust me when I say, I’m not there yet.

I have all the emotions one might expect me to have at this stage in our journey with Alzheimers. I’m sad and angry and I’m scared. Just a few days ago I wrote in my blog that living with this disease is like sitting on a razor blade and waiting for the pain of the cut. It’s true. You learn to live with the anxiety every time the phone rings and you learn to make your schedule loosely, knowing that at any minute, you could be called for an unexpected problem. And yes, you live with the dread of that day when the memory of your name or face gets pushed from the box and you become a stranger to the person who loved you the most. One day you wake up and you realize that you are more afraid of living with the disease than you are of facing the death of your loved one. This is life with Alzheimers and it is the reality of watching the fire burn out.

© 2012 Linda Crist, All rights reserved.

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  • carol7777 profile image

    carol stanley 4 years ago from Arizona

    Quite a situation. How well you explain things and my hat is off to you. Though you may not realize it you are doing all you can and learning all you can. My parents died before they had this problem. I think labels make things tougher..Remember when you said people are getting forgetful and OLD...with a label it becomes a sentence in life. Learning disabilities, ADD etc.. make things tougher in my humble opinion. Keep on trucking..I am sure you will.

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

    Hey Carol! You're right, labels do make it tough but oddly, with Alzheimer's, it opens doors to resources and God knows you can't do this alone. The difference in then and now, is that forgetful and old were manageable. With this disease, there is often aggression, violence, and, as we are experiencing now, serious problems with personal hygiene and bizarre behavior in public. It really does break your heart sometimes. But like you sad, we keep on keeping on and will continue to. Thank you for understanding and taking the time to read and learn. I'm sorry that you lost your parents but not sorry that you never had to deal with this. Chances are though, one day you might use what you've read to help a friend or neighbor and that's what this is all about for me.

  • Jackie Lynnley profile image

    Jackie Lynnley 4 years ago from The Beautiful South

    I know all you are talking about and I came here writing about this. Now I have just a couple of articles published. I am at peace finally but we can never forget. I have heard good news lately that something has been discovered for Alzheimer's but of course maybe it is of no use for ones already well into it. Mom took two different medicines I think did her absolutely no good, just caused stomach pain and if I had it to do over I would not have had her take them. If your dad is in a facility just make sure it is one for Alzheimer's otherwise he will not get the care he needs, believe me. I never knew until it was too late. God bless you.

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

    Hi Jackie. I understand your feelings. Dad is not in a facility yet. We will probably face that decision with the next 3-6 months, if not sooner. He is on both meds, Aricept and Namenda and although he has the stomach problems, they did seem to slow his disease down for the first two years. Now, they don't seem to be working anymore. this is a hard one and although I don't write about it much here, I have started a blog about it. I think we need to hear from each other and share the journey. Thank you for reading this and sharing with me. I may call on your knowledge as we move closer to the decision about facilities.

  • Jackie Lynnley profile image

    Jackie Lynnley 4 years ago from The Beautiful South

    Gladly, anything I can do. The Namenda is the one especially bad and no use. Why put them through that, because there will be no improvement I can about promise you. Of course all this is hard choices and guilt is a big role in caregiver's lives, that never ends...all the what ifs.

    I am here.

  • billybuc profile image

    Bill Holland 4 years ago from Olympia, WA

    Hey Kindred!

    I've told you that my best friend has this damn disease, so I know all about it and there is nothing else for me to add. Of course you know how I feel and of course you know my heart goes out to you and your family.

    love,

    bill

  • mary615 profile image

    Mary Hyatt 4 years ago from Florida

    One of my greatest fears is of getting Alzheimer's Disease. I have had friends like yourself who have lived with this with their loved ones. It is such a sad disease. It must take a lot of love and patience to deal with this.

    I voted this UP, etc.

  • Mhatter99 profile image

    Martin Kloess 4 years ago from San Francisco

    Thank you for this. The closest I came to Alzheimer's was my friend and neighbor, Ted. He had no family, but was an active deacon of St. Gabriel church, who rushed to his aid and care. He died in his home.

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

    Jackie - THANK YOU.

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

    Bill, thanks for the understanding and for what you do for your friend. I write about this disease because every day there are new diagnoses and we are learning from each other how to cope. We're fine. No worries. :-)

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

    Hi Mary! Yes, it does take a lot of love and patience and falling flat on your face too. We are the first genertion of kids to have to deal with Alzheimer's and we are learning as we go and from each other. It is horribly sad to watch someone you love fade into the darkness but you love them even when they don't know you anymore. They deserve that. I can only imagine how scary it is for them on their side.

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

    MH, I hope your friend Ted is as close as you ever have to get to Alzheimer's. Thank God he had a church family to take care of him.

  • midget38 profile image

    Michelle Liew 4 years ago from Singapore

    I have a grandaunt with Alzhimer's and I think that my other aunt, who is taking care of her will find these useful. WIll forward this.

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

    Hi midget. I hope your aunt(s) will find something helpful. We have to talk about this disease and learn from each other. That's why I write about it, to learn and share.

  • debbiepinkston profile image

    Debbie Pinkston 4 years ago from Pereira, Colombia and NW Arkansas

    Thank you on behalf of all who have a family member with Alzheimer's disease. I have heard how taxing it can be to care for someone who cannot do anything for themselves and needs constant care and supervision. Your suggestions are very practical and you also expressed how caregivers often feel.

  • phdast7 profile image

    Theresa Ast 4 years ago from Atlanta, Georgia

    Linda - Such an important and helpful Hub. My father had diabetic dementia for the last three years of his life, but his deterioration although bad was not like that experienced by those afflicted with Alzheimer's. My thoughts and prayers are with you. Blessings. ~~Theresa

  • AMFredenburg profile image

    Aldene Fredenburg 4 years ago from Southwestern New Hampshire

    My mother had Alzheimer's, so I can sympathize with what you're going through. Your article provides a lot of valuable information on dealing with day-to-day care for people with the disease. Thank you for an important article.

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

    Debbie, thank you. We are blessed that my Dad can still do some things for himself but he is fading fast. The most painful part of Alzheimer's is not the lack of mobility, it is the loss of dignity, self-esteem, and connection to others. That, is the part that breaks my heart. If I really expressed my feelings on that part of Alzheimer's, you would hear my wailing in Colombia. I really appreciate your caring message and time.

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

    Teresa, it's all bad, isn't it? It's just very sad to see someone who was once engaged in living, lose that connection. I am sorry for your loss too. Thank you for caring.

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

    Hi AMFredenburg! So you know this disease personally and know how difficult it is. I write about it hoping that somene will be helped by something my family has learned. We have certainly learned a lot from those who have been there before us. Thank you for reading and sharing your experience.

  • Amy Becherer profile image

    Amy Becherer 4 years ago from St. Louis, MO

    Yes, Linda, it is gut-wrenching. My 85 year old mother looks absolutely gorgeous, but following her bypass heart surgery a little over a year ago, she is suffering dementia, though her heart condition is vastly improved. This is a common occurrence in the elderly with time "on the pump"...common enough, although not discussed as a possible side effect, to have the nickname "pump head". My mom is living independently in her own home, but she no longer drives and just as you describe, she remembers all her childhood memories, but not what she ate that day. She is scheduled for cataract surgery in her left eye on Jan 10th and must instill 2 eyedrops in her left eye twice a day. She called me to say she is too confused and cannot do it. This will necessitate my making two trips a day for the 3 days prior to her surgery to put in her eyedrops. No, there is no one else. She doesn't like her neighbors and wouldn't trust a caretaker in her home. My sis, who has many suggestions, lives in HI. My bro lives in Davis, CA. However, my mom has new respect for my diligence, intellect and ingenuity. She made my stress far less when she told me so today. She is much less guarded with me as a result of the dementia and she says what she thinks! Although, this disease is a devastating and frustrating process, and one I would wish on no one, I am learning about my mother on a whole new level and she is seeing things about me that she did not before. It seems to me that Alzheimers and all dementias return the elderly to a more straightforward childlike state, and since we must accept that it is what it is, that part of the process can reveal an endearingly innocent aspect to a parent. In a strange way, it turns the tables and reverses our roles.

    Your article is exactly the way I have found the process of dementia to exhibit itself. I will think of it every time I help my mom. Tell me, Linda, does your father panic at times, because my mother's confusion frightens her. The idea of assisted living, especially since she is shy and reserved, in combination with fear and its resulting disorientation, makes the idea of her living in a home unbearable to me. It is not something that needs to be considered yet, but as this disease is progressive, the eventual possibility of assisted living must be considered ahead of time. Thank you for this thoughtful, loving and meaningful piece, Linda. Bless you, dear heart.

  • Pamela Kinnaird W profile image

    Pamela Kinnaird W 4 years ago from Maui and Arizona

    I thank you for all of the effort and thought you put into compiling this hub and sharing your knowledge.

  • Eiddwen profile image

    Eiddwen 4 years ago from Wales

    A great hub which I am sure will benefit so many readers. Here wishing you a wonderful 2013 .

    Eddy.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Pamela, thank you so much for your comment. I do hope it will be helpful to others.

    Eddy, thanks for reading this one. I know that not everyone faces this horror but could one day and it is my hope that someone will find comfort or answers if they do.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    Thank you Linda for writing this. My mother-in-law is in the first stages: repetition and short term memory loss (almost 3 years now). I want to show this to my husband. He loses his patience with her so often, and wants her to be like she was before. I've told him that realistically he has to prepare himself for the inevitable--she isn't going to ever be the same as she was before. It seems like such a hard thing for him to grasp. I think maybe reading your words will help him to see the reality.

    Voted Up and Useful. I am so grateful you wrote this!

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Grandmapearl, I am so very sorry that you and your husband have to cross paths with Alzheimer's. It really is very painful emotionally. I understand your husband's difficulty. My mother is the same way and can't seem to understand that her husband isn't the person she has always known. She gets angry and fusses at him because he doesn't remember and now that he follows her like a puppy, she's even worse. My brother and I tell her daily that he will never get better; that it will only get worse, and, that she must savor today because tomorrow could be the day he retreats into silence. My Dad worships her and tells her dozens of times every day how much he loves her. It is heartbreaking.

    I am also blogging about her journey and if your husband is willing to read it, it might help him to follow our journey. The blog can be found at http://lcrist.tumblr.com/

    In the meantime, if I can help at all, just ask. I'm no expert but we are learning as we go. Thank you for letting me know of your situation. I am only writing about this because I want our experience to help someone else.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    Thank you so much Linda! My husband read your article last night. I think it is still sinking in, we'll see if he actually accepts the situation and his tension releases about the whole thing. I really appreciate your help, and I think the best experts are those who have to 'live the reality day to day'.

    It was so hard for me to watch my favorite aunt retreat into silence and fail to recognize any of us. She was always so jolly and happy. Her only solace was to hear the Bible read out loud. That had such an amazingly calming affect on her it was heartwarming.

    You will be the one we turn to as time progresses because of your very personal experience and your caring heart. Thanks once again.

    Pearl

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

    Pearl, has your mother-in-law been evaluated by a geriatric psychiatrist? That was the best thing we did for my Dad and I highly recommend it for many reasons. I am planning a hub on that topic (or a blog) very soon. If she has not, you might start researching to find a really good one nearby. That might help your husband as much as it will your mother-in-law.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    Thank you Linda. I will definitely pass this information along to my husband. She has been evaluated by a regular doctor, a physical therapist because of her arthritis, and a home care agency for home safety and nutrition recommendations. I think a geriatric psychiatrist is a very good idea. Thanks for telling me about it.

    Pearl

  • shiningirisheyes profile image

    Shining Irish Eyes 4 years ago from Upstate, New York

    I send my support and wishes to you as I helped care for an elderly family friend of ours from time to time. My heart goes out to you as I watched the hard road these family members had to endure.

    I do wish some relief your way.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Becky, thank you so much. We are managing and know that our journey has really just begun. The real hard days are ahead of us but we are preparing and we are a family that supports each other and works together for the good of all. Thank you for helping to care for your family friend. This is such a sad illness to live with and families need the support and love of friends. Your kindness means a lot to me.

  • AMFredenburg profile image

    Aldene Fredenburg 4 years ago from Southwestern New Hampshire

    LRC7815: It's good that your family is supportive; if you can organize everything involved and divide the tasks among you, it's going to be a lot easier on everyone. And sometimes, if a family member holds back and doesn't help, it's okay to say, "Do this!" Sometimes if you *tell* someone to do something instead of ask, it works! And don't feel guilty afterword! This is a tough, tough situation, and you have a right to expect help.

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

    Hi AMFredenburg. I really appreciate your advice. I am one of the luckiest people in the world. I only have one sibling but he is extraordinary. We divide the work pretty equally and farm out what we can't do between us. We know we haven't hit the worst of this journey yet but we have a really great relationship and are committed to doing this together and with as much dignty as possible. If it ever gets so bad that one of us has to order the other one to help, we will have sunk to a low neither of us has ever experienced. I only wish every family was as blessed as we are. I greatly appreciate your support and advice. Keep it coming! :-)

  • AMFredenburg profile image

    Aldene Fredenburg 4 years ago from Southwestern New Hampshire

    Hi, LRC7815: Good for your brother! too often it falls to the women in the family to do most of the work in these situations.

  • MsDora profile image

    Dora Isaac Weithers 4 years ago from The Caribbean

    My mother is an Alzheimer's victim. Your article is very helpful. Thanks, and all the best going forward!

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

    Hello Ms. Dora. I am so sorry that you are facing the struggle too. I wish that I could offer you some comforting words but this is a really tough journey and the best we can do is - take it one day at a time. Thank you for reading my hub and I wish you and your family the very best too. Take care of yourself because that is just as important as taking care of your mother. And...ask for help when you need it!

  • Lipnancy profile image

    Nancy Yager 4 years ago from Hamburg, New York

    So sorry to hear about your struggle. Please tell us what we can do to make it easier.

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

    Oh Lipnancy, there is nothing you can do but thank you so much for offering and caring. This is a tough journey that many, many people are facing now. My family is fine. We're not happy about this disease but we are fine. We work so well together to do what needs to be done and we have amazing friends and extended family. The day to day stuff is hard and it's horribly sad to watch your loved one fade but it could be so much worse. You are so kind and I appreciate your comment so much.

  • shanmarie profile image

    Shannon 3 years ago from Texas

    Thank you for sharing! This is so very useful to me because I am currently writing a story about how the disease affects a family. All of the stories I come across or that are shared with me are so very moving.

  • lrc7815 profile image
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    Linda Crist 3 years ago from Central Virginia

    Hi Shanmarie. I am glad you found this helpful. These are sad stories to tell but they are reality for so many of us baby boomers. It is important that the world knows how insidious this disease is. Thanks for helping spread the word.

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