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Alzheimer's Disease - Love Doesn't Ease The Pain

Updated on June 19, 2013
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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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Writing through tears isn’t easy. Sharing your most personal feelings is even harder. But there comes a time when you have to turn your pain into something positive and that is what this is all about. You write because you don’t know what else to do and you hope, and pray, that something you write will help someone else.

This is about Alzheimer’s disease, a cruel and destructive disease that can tear even the best relationships into shreds. It takes courage and discipline and patience and love doesn’t ease the pain.

Some things are easy to share

There are some aspects of Alzheimer’s that have simple solutions and it’s easy to write about them. It’s easy to suggest that you develop a routine in your household because routines are necessary for someone who has Alzheimer’s. Offering tips on grooming or personal hygiene are things that can be written about without emotional attachment. It is easy to write about the day that you had to take the driving privilege away from your Mom or Dad. Yes, some things are easy to write about. But not this one. Not today.

How do you write about the day you called to check on your parents and found them screaming angry insults at each other? How do you tell the world that you are scared that one of them is going to become physically violent and someone is going to get hurt? I guess you just sit down at the keyboard and let it flow because there is no where else for these emotions to go. It’s a feeling of desperation that I’ve never known before.

We Love But We Struggle Too

My parents love each other and for the first 60 years of their marriage, I never heard them have a disagreement. Three years ago my Dad was diagnosed with Alzheimer’s disease. His only symptoms were short term memory loss and repeating himself a lot. Medication slowed the progression of his disease and and we found ways to help keep some of the memories alive. For two years, things were okay. Our family learned to cope.

In the last six months, things have gone downhill fast. The medications are no longer working and Dad is showing signs of slipping into the final stages of Alzheimer’s. He has trouble speaking, chokes easily, and is content to just sit. He has lost interest in everything except his family. He has become very emotional and is quick to tell you he loves you and quick to cry over almost nothing. He follows my Mom from room to room now. She is his security; the place he feels safe, and he wants to be with her every minute of the day. It drives her nuts.

Mom is handicapped by a stroke. She isn’t stable on her feet and cannot do many of the things that used to bring her so much joy. Since her stroke 13 years ago, Dad has done everything that she could not do and he has done it without the first complaint. But the stroke took many things from my mother and one of them is her ability to rationalize my Dad’s Alzheimer’s. He still looks like her husband and she can’t accept or understand that the man she knew has slipped away. He is hidden behind a cloud; a kaleidoscope of memories that don’t fit together or make sense to him. It is a constant struggle for him as he tries to sort the images in his mind. The stroke also stole my Mom’s inhibition. She speaks before she thinks. And then, it’s too late.

Good Days and Bad Ones Too

Family gatherings have become difficult. For a family who knew nothing but love and patience with each other, this new dynamic is painful. It hurts deeply to see Mom be critical of my Dad in front of the rest of us. And it hurts to see how his self-esteem has suffered. If there is one thing I know about this disease, it is that praise goes a long, long way. People with Alzheimer’s need positive reinforcement and they need a lot of it. The reward for it is immeasurable, both for the person with the disease and their family. And, the penalty for not providing that positive reinforcement is just as significant. A person who is living in the Alzheimer World of clouds and shadows will react if they feel threatened or belittled. Even the most friendly dog will bite if it feels threatened. It is our basic instinct and Alzheimer’s does not take that away.

There are no 50 shades of gray to Alzheimer’s disease. There are simply good days and bad days. It’s black or it’s white. The good days are wonderfully good and the bad days are tragically bad. The problems may differ but the overall picture is either good or bad, black or white.

A Very Bad Day

Today, is a bad day; a black day. I’m scared. I’m scared that the two people who taught me about love and respect, about tolerance and patience, and, about compassion are going to hurt each other. And I know that neither of them could live with themselves if that happens.

These emotions that have been unleashed stem from what was supposed to be a simple “checking in on you” phone call. On the days when I don’t visit, I call. It’s my routine and they have come to expect it. Today, I dialed the number and I waited. The phone rang longer than usual and when my Dad answered, I heard it in his voice. He was agitated; more agitated than I’ve ever heard before. In the background, I heard my Mom sobbing. My heart sank and the flag of a bad day rose. But this was different. It gave me goosebumps and for a moment, I couldn’t get my breath. When I started to speak, Dad rudely interrupted me with a remark that is totally out of character. Then Mom screamed at him and he responded with another rude remark directed at her. The conversation went from bad to worse.

For a few minutes I sat on my end of the phone listening to a heated argument with Dad challenging Mom and Mom screaming back at him through sobs. I have never felt more helpless. Here I am, several miles away and two people I love most are viciously attacking each other with words. And, it is escalating. My logical brain tells me that if something doesn’t change, someone is going to get hurt. I begin pleading with Dad to leave the room; to go to the den and watch TV, leaving Mom alone for a while. He snaps at me again but finally agrees to go. Mom refuses to talk to me so I tell Dad to hang up the telephone and just go to the den.

Before I can catch my breath again, my brother calls. Dad has called him to come and intervene on his behalf. This is a good thing as my brother is a calming influence on them both.

While writing this, my brother has called to say that things are okay now. He was able to calm the storm and is on his way home.

No, Love Doesn't Ease The Pain

So, why have I written about this very personal moment? Because, if you have a loved one with Alzheimer’s, this can happen to you. It is my hope that in sharing my story, you will have time to prepare for the personality changes that this disease can inflict. It is my hope that you will enlist the help of professionals before the time comes when you need them. Our family has a team of professionals on board and tomorrow, we will discuss with them if it is time to make changes in my Mom and Dad’s living arrangements. If they cannot control their emotions and safety has become an issue, then it may be time for us to move them to a more controlled environment. As hard as that may be, it will be worth the peace of mind. Neither my Mom nor my Dad could live with the idea that one of them hurt the other. This man who looks like my Dad is not the same man I knew. He is my “other Dad” and we don’t know him very well. We don’t know what he is capable of and so we have to be proactive and prevent a real crisis. Will this be painful? Yes, it will be but so will the consequence of doing nothing.

There comes a time when a family must make very difficult decisions in the name of safety and logic. Alzheimer’s disease forces your hand and always before you are really ready. Love doesn’t ease the pain of difficult decisions. I don’t know if you are ever really prepared but today is proof that you have to be willing; willing to trust the professionals. Maybe tomorrow will be a good day and we can process today appropriately.


© 2013 Linda Crist, All rights reserved.

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

    Oh Paul, your message means the world to me and you are right about it not being so critical that you missed my pity party. Your being here today with so much support and encouragement makes you every bit as vital and precious as those who happened to drop by when I was doing the ugly cry. Your heart is so enormous and your spirit so kind. I felt your genuine concern in every word you wrote here today and I can't find words to adequately express my gratitude. You are an amaing friend and I feel truly blessed. Thank you Paula. I hear you and I feel the sincerity in your message. You really are a special person and I promise I won't have another party (of any kind) without you. :-)

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    Paula 4 years ago from Beautiful Upstate New York

    Linda, dear, sweet lady....at first, I was so upset with myself for having missed your pity party yesterday. Disappointed in myself, that I could not be there for you, with all the other sweet and caring hub friends.

    But then, I thought...."no, this is good." Today, in a calmer moment, you can still use support and words of understanding. After all, the after shocks remain, even when we seem to feel much better. In the back of your mind, you have filed yet another concern...

    Linda, I can relate and I felt your panic so realistically. How wonderful that your brother was able to be there to smooth the situation and offer you some consolation, in your time of such fear.

    I am with you, dear..just as you experienced the flow of those who have grown to care for you so much.... Please, Linda, never ever hesitate to express your worries and/or get your emotions aired during times of stress.....

    I don't need to tell you this. You know it very well. That's what friends are for. Sending hugs and understanding....

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

    Leslie, you are such a hoot I appreciate you more than you know. Dry the tears and do a happy dance because I am fine now that I've dumped it all. lol

  • ImKarn23 profile image

    Karen Silverman 4 years ago

    Linda..how did i miss this???

    i am SO SO SO sorry for you and your entire family..

    Why in the world you would feel shame at exposing REAL and - yes - BEAUTIFULLY healthy emotion for your father first - and then for your 'loss'..

    Clearly, you are amongst friends - and - friends don't judge friends - they only support and love..

    i thought this was amazing - even if i am crying for you..

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

    Pearl, you are so right about the lack of information about the dark side of Alzheimer's. And, it is impossible to understand because the person who has the disease can't communicate what it feels like inside their brain. It will probably always have some mystery about it. Thanks for the prayers my friend.

  • remaniki profile image

    Rema T V 4 years ago from Chennai, India

    Sure Linda. We'll keep in touch. Maria, you are a darling, thank you.

    Cheers, Rema.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    Linda, it's amazing to me that with all the information available on Alzheimer's more isn't written about the 'darker side'. And there is indeed a blackness to it. That's why it was so necessary for you to share your fears and concerns. There is really no way to relate to what an Alzheimer patient goes through.

    I keep praying that science will find a way to prevent and better treat this malady. I will pray for your parents and you as well, my friend.

    Pearl

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

    Hello MsDora. Thank you for the support and understanding. This was hard, you are right. But I think we must share the hard stories too as our generation is writing the book on living with this disease. It would be much easier to deny that these situations are possible; that our loved one would never hurt anyone. But we don't really know, do we? We don't really know what is happening inside an Alzheimer's brain or, what might trigger an aggressive response. Knowledge is power and talking about these things will help others be more prepared than we are/were. It's hard and I am so very sorry that you know Alzheimer's personally. Keeping you and your family in my thoughts and prayers as you travel this unpredictable road too.

  • MsDora profile image

    Dora Isaac Weithers 4 years ago from The Caribbean

    Lrc7815, congratulations on your bravery and determination in telling your story. My mother is also an Alzheimer's victim and being the only child, and the only person in the house with her, she takes it out on me some days. Some things are too personal to tell, so I understand your hesitation. May God grant you peace of mind and strength to hold up. Thanks for sharing.

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

    Hi Lipnancy! Thanks for the support. Yes, it is hard sometimes and then there are days like today when everything is good. Those are the days that we live for. Thanks again!!!

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

    Jim, I thought I might find you here. It was a rough day but look, I survived. lol My brother and I talk daily about how we sometimes feel like pioneers in this journey. There is still so little that we know about Alzheimer's beyond that there is no really effective treatment. The mind is still a mystery, isn't it? I spent some time with Dad today and found myself wondering what it must feel like inside his mind. Today was a really good day and we laughed a lot. And he shared many things with me about loving others and about his philosophy of how others should be treated. I was so proud to be this man's daughter. Jim, thank you for the well wishes and for theencouragement. We have to talk about this disease even when it would be easier to shove it in the closet. I want to do my part to help others. With your help and the help of my other friends here, I will manage. Hugs!

  • Lipnancy profile image

    Nancy Yager 4 years ago from Hamburg, New York

    So sorry. I cannot imagine how difficult this must be for you to go through.

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    Jim Higgins 4 years ago from Eugene, Oregon

    I missed this the day you published it, and want to say that, as painful as it msut have been to write, it will be helpful to someone, I am sure. Your parents are fortunate to have a loving family to care for them. I am certain it will be difficult, but you are obviously a strong, intelligent person with a lot of heart. We all wish you well.

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

    Sweet Amy...you have the most beautiful way of saying things of the heart. You could paint the sunrise with words; unlike anyone I've ever known. I would love, for even a moment, to see through your eyes because your intuitive vision and ability to communicate are just magical.

    I know you understand and I appreciate your words more than I can express. Thank you for the compliment, for understanding, and for supporting my decision to write about this event. I send you hugs and a plethora of blessings.

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

    Hello vickiw. Thank you so much for your sweet comment. Loss is loss, isn't it? We all experience it and in spite of how hard it is, we manage. I appreciate your support and encouragement.

  • Amy Becherer profile image

    Amy Becherer 4 years ago from St. Louis, MO

    The progression of Alzheimers is a monsterous thing, away and beyond the bonds of the greatest love. The reality of the disease, at this point in time, is that it is strikes indiscriminantly and cannot be deterred or stopped. It changes people in unpredictable ways, shocking even its victims when they are lucid. It is indescribably difficult for the offspring to see their parents, their rock, their beloved mom or dad, become a stranger. Separating oneself pragmatically, while still loving the parent, or any loved one we've always known, can be more emotionally devastating than losing the person to sudden death. Alzheimers is usually a protracted, progressive disease that often, at some point, can leave its victims as unrecognizable as we are to them. Fear, grief and loss are present on both sides of the fence throughout the illness.

    I am so sorry, Linda, that you and your beloved parents are experiencing the frightening spector of potential, yet completely unintended violence. You are not alone and you are completely justified in your fear, sadness and grief. Your ability to handle these changes is beyond admirable and I want to thank you for sharing this devastating, all consuming, life altering event. You have helped to prepare many families for the traumatic changes that often occur with Alzheimers. Your first hand account is an example of bravery, compassion and love in the face of the greatest adversity. Bless you, Linda.

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    Vickiw 4 years ago

    Irc7815, I think this was such a heartfelt article, and in a way it is a comfort when people like you write and help others understand such difficult things that no one ever wants to experience. I see loss every week in my bereavement group, and this is an equally horrible loss. What a challenge for you. I will keep you in my heart. Know that my thoughts are with you.

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

    Oh Pearl, your message has chilled me to the bone. You knew exactly what we feared last night and you have shared the stories that prove our fears were founded. This disease has a dark side that most don't want to acknowledge. It's hard to believe that someone you've loved for so long could be capable of such menacing deeds. But, it's true and has to be faced. Thank you so much for sharing the stories. I hope that everyone who reads this hub will also read through the comments. You have put a spotlight on what may be the most important chapter of Alzheimer's and I am so grateful. Thank you, from the depth of my heart. You have also validated my emotional explosion and made me feel a bit less foolish for unleashing the emotions. Bless you!

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

    Mike, you have stirred my soul too. You have earned your wings in my opinion. Your message screams of understanding. You've been there and done that and it has changed you. This disease, in my opinion, is a beast and it must be conquered. It is the saddest of hem all and watching your loved one become a vacant stare is so horrid. Bless you Mike, for taking care of Grannie Wright and for taking the painful lessons and turning them into something positive. That is something I understand as it was my purpose in that moment of desperation as I wrote this hub. Thank you for understanding that and for understanding how vulnerable I felt. You have a forever place in my heart for what you have done and continue to do for your aging friends.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    I remember years ago, a couple who were very good friends of my parents came to a very tough spot in their lives. Al woke up to find his loving wife of 65 years poised over him with a knife in her hand! Marge had been misdiagnosed with postmenopausal anxiety syndrome, or some such similar thing. When in fact, she had Alzheimer's Disease that had been totally ignored.

    Following this incident, Marge had to be hospitalized and then put in a rest home. It broke Al's heart, and needless to say, my parents were devastated as well. Marge had always been a person that loved to laugh, loved her family, and most of all adored Al. We were all just very grateful that he awoke when he did.

    A similar thing happened to my aunt and uncle before my cousin came out of denial and had to admit that something drastic needed to change before one of her parents hurt the other. As it happened, she found out later that my uncle had been attacked by my aunt on several occasions, but said nothing.

    I am so glad you are bringing all this to light. This insidious disease is more than just emotionally painful, which is bad enough. Voted Up and Useful. Thanks for sharing your personal experience in the hope that others won't have to learn the hard way how bad Alzheimer's can be.

    Pearl

  • mjboomer profile image

    Mike Elzner 4 years ago from Oregon

    Linda, thank you for sharing your deepest feelings and vulnerability while coping with this awful disease. Your writing stirs my soul, because I experienced dementia first at a very young age.

    After being one of my primary caregivers for the first 12 years of my life my grandmother began to fall victim to Alzheimer's, eventually leaving her mind ravaged.

    As a child I watched my grandmother's caring and compassionate personality become a blank stare. It is heart wrenching when someone you love asks you, "Who are you?"

    Grannie Wright is the reason I spend each day with my aging friends helping them find some peace, acceptance and love in the midst of the turmoil created by Alzheimer's. God Bless, Mike

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

    Maria, you are my sunshine this morning. It's a new day and I cannot express my gratitude for your friendship. You are treasured.

  • marcoujor profile image

    Maria Jordan 4 years ago from Jeffersonville PA

    Dear Linda,

    I woke up and thought immediately of you and your dear parents.

    Promise to never feel silly for expressing the reality of your feelings and know that you are loved. You too, Rema... Hugs, Maria

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

    Dearest Faith, my forever inspiratioal friend. Your message means the world to me and I feel your love and support. The sun has risen on a new day and in retrospect, I feel a bit silly for the way I poured those emotions into this hub. I didn't know what else to do with them. I pray and pray that we can get through these days without a physical insult to either parent. This disease is predictable in many ways and unpredictable in others. Your kindness and encouragement have lifted me this morning and I am now ready to face the day. Polish your wings my angel because you are so necessary to those of us who love you.

    Sending you love and hugs!

    Linda

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

    Rema, your message made writing this one worth the tears. Alzheimer's is so cruel and although we hear the word often, few really talk about the struggle. We have to let this beast out of the closet so that we can help each other. Thank you for sharing your story too. I am so sorry that you are dealing with this disease. It's wonderful that you live close enough to keep an eye on your parents. I am a bit surprised that the medications have not been recommended for your Dad. My Dad has been on Aricept and Namenda since he was diagnosed. They slowed the progression of his disease significantly. We also have a geriatric psychiatrist who specialized in Alzheimer's and who has become an invaluable resource for us. Most days, we cope quite well but the anger of yesterday was shocking. My Mom just doesn't grasp that the reason Dad follows her is because he doesn't feel secure or safe without her. He is no longer able to initiate activity on his own and depends on her to tell him what he needs to do.

    So, it seems we have a tough road ahead but we will get through it with the help of friends and family. Thank you so much for the good wishes, love, and hugs too. I send you an abundance of the same. Let's keep in touch.

  • Faith Reaper profile image

    Faith Reaper 4 years ago from southern USA

    Oh, my dear sweet friend, who is always so strong for everyone else, my heart goes out to you. Just write and write until it all comes out dearest Linda. Yes, the pain is not eased by love. Please know you and your family are in my thoughts and prayers during this time that has come to make those very, very difficult decisions in this lifetime.

    This is a very painful read, as my heart knows how very painful this is for you to have to live through such and seeing your precious loved ones suffering and now you too.

    Praying for your . . . comfort, peace and strength for upcoming days and future tomorrows.

    Hugs and love, Faith Reaper

  • remaniki profile image

    Rema T V 4 years ago from Chennai, India

    Hi Linda,

    I cried and am still crying as I write this because I am in a similar position as you are but not so bad as yet. I would have written a similar hub, maybe six months ahead, not that I wish to. I understand your predicament absolutely.

    My father has Alzheimer's. He is suffering from memory loss and has not reached a stage where he gets agitated. The only consolation for me is that I stay in an apartment opposite my parents' and can run to them in case they need me.

    We have sought professional advice but at that time, the doctor felt that my father doesn't need any medicines. He only takes multivitamins and nothing else. I haven't seen his condition getting worse, at least not yet, and I am thankful for this.

    I feel very sad that the once smart man who used to remember and recognize people even after 20 years of meeting them is in this condition now. To me it looks like he has sort of resigned himself to his present situation. May not be, it is just my feeling. He depends on me for every outside activity now and it hurts to think that 2 years ago even at 85, he was very independent and wouldn't allow any of us to help him out with his payment of bills or bank transactions.

    Now he has become quiet and as you mentioned goes behind my mother everywhere she goes. If my mother and I go out together, we tell him several times not to look for her when she is away and he understands (or at least it seems so). Anyway my husband and daughter check out on him frequently.

    Good that you wrote this hub Linda. It will certainly help many others like me in a similar situation. I really hope and pray that things improve at your parents' home.

    I need the same wishes too :)

    Lots of love, hugs and cheers,

    Rema.

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

    MH, thank you so much for caring. I am sorry about your friend and neighbor but am so glad that he had a supportive church family. We too have a lot of support and are very lucky. Today was literally, just one of those bad days when the the circumstance of two parents who are mentally incaple of rationale collided in a frenzy of anger. It was frightening but, it is the reality of Alzheimer's. I felt it should be shared althuogh I would prefer to keep days like this private. Talk about a loss of dignity. lol I laid my dignity out there didn't I? Again, thank you!

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    Martin Kloess 4 years ago from San Francisco

    Thank you for this. Let me share this I met my neighbor Ken when volunteering for St. Gabriel Church. He was a deacon for the church. Ken developed Alzheimer's. The church rushed to his aid. Ken had no family. Thanks to St. Gabriel, Ken was able to end his life, at home, with dignity.

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

    Bill, my kindred spirit. You are always there, aren't you? I thought about your friend as I wrote this. I wondered what his support system is or, if he even has one. The hardest thing about this disease is not knowing what is understood and what the brain is no longer capable of processing. We got a good taste of that tonight. We are clueless. As in all things, this day has almost come and gone and tomorrow is a different day. Time, even minutes, heals and I am better now that I have written this. I am so in hopes that by unveiling this part of me, someone else will be helped along their journey. Thank you Bill, for the hug, for the friendship, and for understanding. I never doubted that you would be there offering them.

    I do hope you and Bev have had a better day today too.

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

    Maria, my sister, you understood, didn't you? Yes, it was cathartic and I knew I had to show this vulnerable, scared side so that others would not feel so alone and frightened. It's been a tough day but tomorrow the sun will shine again. I'm okay so do not worry. :-) Thank you for your love and support. You are a spirit sister of the bestest kind.

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    Bill Holland 4 years ago from Olympia, WA

    Although I do not have parents with this disease, I am intimately aware of it. As you know, my best friend has it, and I have watched over the past four years as the disease has changed him drastically. The tough decisions will have to be made soon, and he knows it.

    There are no words that I can share with you. As you said, there are good days and bad days, and the bad days eventually overwhelm and outnumber the good.

    Sending you a hug of understanding my dear friend.

    love,

    bill

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    Maria Jordan 4 years ago from Jeffersonville PA

    Oh Dear Linda,

    In writing this out as a catharsis, you have opened the door and helped so many others who have loved ones with Alzheimer's Disease.

    My heart, thoughts and love are with you and your family. I am praying for your strength and that tomorrow is a good day.

    Love, Maria