Journey Mercies . . . Alzheimers: Walking Into Oblivion

Journey Mercies . . . Alzheimers: Walking Into Oblivion

In her book To Kill a Mockingbird, Harper Lee beautifully wrote . . .

Via Pinterest

I found this to be the case as I learned more about Barry Petersen.

November is National Alzheimer Awareness Month and our Blog Coordinator, Molly Keating, asked me if I would take the opportunity to write something that we could share to help bring more awareness to this insidious disease. Other than those who were famous and who were willing to share their fate, (President Ronald Reagan, Charlton Heston, and most recently, Glen Campbell) my only connection with Alzheimer’s is with two very close friends, a girlfriend whose mother was diagnosed, and a fellow Rotarian whose wife was diagnosed. Both have expressed their love and devotion, as well as their concern for their care. In conversations with them I have asked naïve, simple questions as I didn’t want them to feel as if I was prying but I also didn’t really know what to ask because I didn’t have any deep knowledge of their situation.

I remember seeing a story several years ago that was shown on the CBS News program “Sunday Morning”, with Charles Osgood.  It was a short story told by news reporter Barry Peterson who’s poignant and heart-wrenching account brought tears to my eyes. (You can watch the video I saw here)

Jan Chorlton was a beautiful, vivacious, smart news reporter and Barry Peterson fell head over heels for her. After going through a very tough divorce he never expected to find anyone with her charisma, much less her looks. They fell in love, married in 1985 and . . . of course you would always end that sentence with “and they lived happily every after,” right? Nothing could have been further from the truth. In Barry Peterson’s book Jan’s Story, he describes a love lost to a diagnosis of Early Onset Alzheimer’s Disease. Most people think of Alzheimer’s as a disease of the old. His wife, Jan, was diagnosed in 2005 at the age of 55. His book chronicles their journey into the abyss of Alzheimer’s Disease.

Via amazon.com

In this incredible book his pain is palpable as he describes in detail Jan’s decent into that dark hole. He confesses to spending years denying that anything was wrong. Chronicling the “Seven Stages of Alzheimer’s Disease,” Barry reveals all of the sadness, anger, guilt, exhaustion and helplessness he felt and still feels as he watches the love of his life continue to change before him. The first stage entitled, Walking Into Oblivion: Stage One, reads: No impairment (normal function). Unimpaired individuals experience no memory problems and none are evident to a healthcare professional during a medical interview. As Barry put it, “it seems strange that the first Stage of Alzheimer’s is about showing no obvious symptoms. The answer lies within the disease, an answer that offers the additional terror that Alzheimer’s is already at work before a person knows it.”

After reading Jan’s Story I have been realizing how much I didn’t know, how much I couldn’t or didn’t want to believe what The Disease does, and how utterly terrifying it is.  In the past I have attended and supported the Visionary Women’s luncheon, where each year the Women’s Circle of the Alzheimer’s Association honors Orange County caregivers who display extraordinary compassion in caring for those touched by Alzheimer’s disease and related forms of dementia.
  And, I know of the great educational programs the Orange County Chapter of the Alzheimer’s Association provide to our community, family and private caregivers, and professionals who care for Alzheimer patients. But I had never taken the time to really peel back the layers of The Disease and read a first hand account from one who is walking, running, fleeing from that which will destroy the life of the one suffering from it as well as the lives of those caring for them. Families agonize and relationships dissolve.

Barry Peterson offers the reader a personal tour of not only Jan’s descent, but his as well.  He reveals how each and every day he loses a little more of Jan in mind and spirit . . . even while her body was still beautifully alive. His honesty reveals how difficult it was to find others who were caregivers that were willing to meet and create a safe place to speak freely. He brings to life the exhaustion of care-giving, and his immense loneliness. With amazing courage he exposes his own thoughts of suicide, the grief of love lost, and the rejection of his friends as he is judged to be “abandoning” Jan for eventually placing her in a home. He takes you to the brink and gives you the opportunity to make up your own mind about what you would do in his shoes. Decisions that meant he could survive another day.

It is a story of undeniable and enduring love – but a love of one dimension.  A love that, destroyed by The Disease, provided no reciprocation. A love that was meant to live forever and which day by day faded into nothingness. It’s a story of a man who traveled a road alone, endured, and found renewal. Barry Peterson chose life.

If you haven’t had the opportunity to take an in-depth look at Alzheimer’s Disease and know and understand the insidious sinister way that it takes away all memory and leaves only the shell of what use to be, please pick up a copy of Jan’s Story or read Still Alice by Lisa Genova. Still Alice is a fictional account of Alice Howland, Cognitive Psychology Professor at Harvard University, who at 50 years old was diagnosed with Early Onset Alzheimer’s Disease.

None of us are certain what our future holds. Barry certainly imagined differently. What I know for sure is not to stand in judgment of others, especially when we don’t want to imagine what it would be like to walk in their shoes. I’ve learned so much from the courageous authors, Barry Peterson and Lisa Genova. I’ve learned that there are some things that we have no control over, and some things we do. I will choose knowledge and understanding that leads to compassion. I will choose life.

Patricia

About Patricia

I’m a native Californian, born and raised in Long Beach. I raised 4 great kids and now have 9 grandchildren. I’m experiencing the greatest chapter of my life right now. I’m blessed beyond words, and so grateful for each day.

I’ve been with the O’Connor Family for the past 19 years and have counted it one of my deepest joys and greatest accomplishments. Never did I realize that a passion could become a profession.

I have come to believe that serving others, in whatever capacity, gives me a sense of purpose. It has also given me the opportunity to meet incredible healthcare professionals as well as myriads of selfless volunteers. And out of those relationships have come deep, meaningful friendships.

We all have an opportunity to do good work. My goal is to create trusting relationships. My desire is to know that what I have done matters. I sum this up with a quote by

Norm Henderson . . . “I want to plant trees under whose shade I may not sit”.

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  • Pat,

    Wow, I feel your compassion and disdain for this disease through this blog Pat. Thank you for sharing and enlightening us. My family has been hit by this awful disease. My mom’s mom was diagnosed and lived with it for about 10 years. My walk away as a young man was simple and disturbing. “You lose them before you lose them.” It was heartbreaking to watch this vivacious and classy lady go down into the abyss never to return. It was also very hard to watch my mother walk this walk and her sadness upon returning from visits. My grandmother had to finally be placed in a home for help as well. That decision was one of the hardest my mom has ever had to make. My mom is 78 now, plays tennis weekly and has less wrinkles than I do. I feel lucky!

    Chuck

    • Patricia Kolstad

      Chuck . .
      We just never know who in our lives will have Alzheimer’s as part of their family history. Undeniably the statistics are daunting . . . 5.4 million Americans are now living with Alzheimer’s disease and it is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed down. The statistics are staggering.

      Placing your grandmother in a care facility is really the healthiest decision your mom could make. It is revealed that family caregivers suffer enormous physical, mental and emotional deficits by trying to care for their loved one with a dementia related illness or catastrophic disease.

      Thank you for sharing your families journey, Chuck. I’m sure it will help those who are just finding out that someone they love has been diagnosed.

      Pat

  • Tom

    Thank you for giving me insight into the feelings of those you care for one those with alzheimer’s disease.

    • Patricia Kolstad

      Thank you Tom, for your comments.

      We really do need to understand more the terrible death sentence that families with loved ones diagnosed with Alzheimer’s face. It’s one of the most tragic news a family could receive.

      Pat

  • Anne Collins

    Pat
    Thank you for providing this insightful perspective. It is so vital to find ways to help, support and show respect to the suffering one and also to give comfort and moments of normalcy to the caregiver. They must not feel abandoned, or suddenly unwelcome socially, simply because we are uncomfortable with dealing with someone who cannot communicate in return in what we consider appropriate ways.

    Our neighbors had this situation for years. The husband was sharp, a retired CPA and his wife had severe alzheimer’s but could still play bridge, enjoy travel trips and the like. He opened their home to bridge couples 3 and 4 nights a week and exposed his wife to people who were willing to accept her oddball comments or times that she wandered from the game and it gave them a somewhat normal life. They also continued to travel with their trailer club and gather in outdoor settings, even in Hawaii and Europe. While Les had to handle it all and handle Phyllis, too, he did it, with a positive attitude as much as possible and kept her social.
    Social contact, though difficult for healthy people to give sometimes, is a must to keep both the patient and the spouse or family member going. Isolation is the most tragic aspect they face. It can dishearten a day when they face rejection.
    Thanks for sharing.
    Love
    Anne

    • Patricia Kolstad

      Hi Anne

      Thank you so much for your comments. From what I have read, and by all means, I am no expert on this, those with the diagnosis have many issues that raise their evil heads without any warning. Social contact does become something that causes the sufferer to question if they even want to be in a social atmosphere, Isolation is something most family caregivers see when the effects of the disease take over a normally “social” person and turns them into a recluse. I applaud those who can maintain a stable atmosphere over several years. From what I read, it is an exhausting job.

      Thanks, Annie, and I appreciate you and your willingness to share your observations with others.

      Love to you!

      Pat

      Pat

  • Shayna Mallik

    Wow, Pat what an amazing and insightful blog. Thank you so much for helping us all see more into this disease. I personally have never had to deal with this disease but feel for the families who are going thru loosing their loved one before actually loosing them. Your words of wisdom mean so much from me. I hope that I can be half as incredible and successful you are. Thank you again for sharing this blog

    <3 Shayna

    • Patricia Kolstad

      Shayna:
      Only having a couple of friends whose loved ones have this terrible disease, I had only once visually observed how a perfectly wonderful woman, (who I had known for 6 years) a wife, mother, grandmother, friend, could be so confused, not know who I was, and made up a story about how Jim (her husband and my friend) was bringing the car around to take her home. She has been in an Alzheimer’s care facility for the past 2 years. She was diagnosed almost 3 years ago, and now does not know anyone in her family. It was tragic to see and heartbreaking to know that my friend was looking his wife of 52 years. For me now, it’s all about education and finding how we can support those families whose loved one has died of this insidious disease.

      Thank you for sharing your thoughts.

      Pat

  • Chrislyn Coleman

    Alzheimers has touched my family on both the maternal and paternal side of my family. My 1st experience alzheimers in my family was with my Great-Grandfather Christensen (my Dad’s side). I don’t recall my exact age but I was definately young elementary school age. I was here in CA visiting my Dad when my Grandmother took me to visit with Grandpa Christensen. I briefly remember her trying to explain to me on the way to visit him that he had problems with his memory and would possibly not remember who she was much less know that we were his family members. I don’t recall being afraid but if I was all that would have gone instantly as soon as I saw him smile. I remember holding my Grandmothers hand as we walked towards him. He was sitting in his wheelchair in a large room at the care facility he lived at. I can still see him smiling at us as we approached him. His smile was so warm and inviting. He appeared to be so happy to have visitors and it didn’t matter if he remembered who we were or not. While my Grandmother explained our relationships to him he would just reply “yes, yes” all the while staring us and smiling. We stayed with him for a while as my Grandma caught him up on family events. She spoke with him just as should would have before. When we left that day I believe all he could gather is that a lady in the company of a little girl who was visiting from Hawaii came to see him that day but he appeared so happy with that smile on his face. Still at that age I knew how lucky I was to have been able to meet and spend time with my Great-Grandfather.
    My 2nd experience touches my heart deeper than the first. My Great-Grandmother Bertha Longaket Samson, aka Gram”, passed away Oct 2007 at the age of 97. She was born in Cebu Philippines and moved to Hawaii with her family as a young girl. It was in Hawaii where she met the love of her life and husband. She was 14 and he 17 years old when they married. They raised a family of three in the plantation town of Waimanalo. She was a seamstress and my Great-Grandfather (Papa) was a plantation worker. I grew up in my Great-Grandparents home along with everyone else in our large close knit family. All family events, holidays, and gathering were held there. They practically raised me and my cousins while our parents were working. My Gram was a very spunky, fun loving, sometimes fiesty women, and also the disciplinarian. She would put us all down for naps singing “Home, Home, on The Range” but most of the time would fall asleep herself doing so hahaha. She would always tell us kids that she was getting old and losing her memory but we would brush it off not believing her cause she always seemed to have her witts about her and she had been saying so for more years than we could all remember. I was an adult with a family of my own when my Mom called to tell me that Gram had been diagnosed with Alzheimers and that over the years she had suffered a series of mini strokes. All I really remember after that phone call was crawling into my bed and curling up in a ball crying like a baby. Two years before she passed I was able to take my three children to Hawaii so they could meet and visit with their Great-Grandmother. I had not seen her myself in years. When we arrived at the family home in Hawaii it was comforting that she remembered who I was despite the fact that her memory had deteriorated horribly and she had already been bed ridden for about 6 years. She was beside herself that I had children and kept commenting on the “little haole” girl with the blonde hair. She would scold my Nana and I every morning as we sat at the breakfast table because we were sitting around and not making breakfast for the children. She would ask every morning who they belonged to and would comment how cute and haole they were. She loved watching the kids and loved it when they talked with her. During this visit my Mom had found Gram & Papa’s wedding picture and asked me to hold it up in front of Gram to see if she would remember anything. As soon as I held up the picture she asked me where I got that and told me that it was a picture of her and her husband. She stared at it with the biggest smile on her face. You could see heart heart fill with joy and happiness. That was a great trip and I was so happy I was able to take the kids back to meet her before she passed. Two years later I received a call from my Mom telling me I needed to come home to see Gram because it was unknown how much longer she would have. I booked a flight for the next week thinking all the while that at least I would be able to see her now if I wasn’t able to make it back for any services. I flew in on a Friday afternoon and when I reached the family house in Waimanalo my Mom prepared me for the worst. She explained that Gram had not spoken in weeks and the most I would be able to get out of her would be some jaw movement when talking to her. I immediately went to her bedside as I walked in the door and leaned in close to her saying “Gram, it’s Chrislyn. I’m home”. She instantly opened her eyes and looked at me, my Mom shocked standing behind me, and Gram responded “Oh good you are home. Where have you been? (as if to scold me for being gone so long) It’s good you’re back home”. She then closed her eyes as she smiled and never spoke another word. She passed the next morning around 4am. It was a great loss to our family. Our Matriarch, Gram, Auntie, and light of many of our lives had left but not with out teaching all of us how to love, and how to enjoy life.
    Now our lives again are touched with Alzheimers as my Grandfather, my Mother’s Dad and son of Bertha aka Gram has been diagnosed with in the last year. He is in the early stages and my Mom is doing a great job of caring for him. I have aways appreciated my time with my Great-Grandparents and my Grandparents and have always known how blessed I was to have been able to grow up with them. Cherish every moment, ask many questions about your heritage and family background, write down family recipes, and always pass the following along to the next generation! XOXO <3

  • Patricia Kolstad

    My sweet Chrislyn:

    As well as I know you, I have never heard you speak about Alzheimer’s in your family. I am so sorry that this awful disease has touched your family so frequently. You have written such an in-depth story of how you remember your sweet grandparents, and I can just imagine your first encounter with your sweet grandpa and how he would smile, never knowing who you were. You have first hand knowledge of the sadness it causes within a family unit, especially when in your culture, everyone lived together.

    Thank you so much for sharing from you heart. You have painted a remarkable picture for all of us, and you have made a point about living in the moment, finding out all about your family, sharing stories and information, which in turn will keep them always alive in our heart.

    Thank you so much for your interest in our blog.

    Momma Pat

  • Kari Leslie

    Mom,
    Thank you for being willing to learn more about this disease and to support those groups around you that work directly with the victims. What you shared was so informative, I can’t wait to read the books. I watched the news clip, and it was almost too much to take. Thinking of myself and my relationship with my husband, I can’t imagine not knowing him, or he me. How devastating. I would like for Kevin to enjoy his life, and I think it’s something that we may need to discuss.
    I love the learning that takes place on our blog!! Thanks for dedicating yourself to the team.
    Love you,
    kari

    • Patricia Kolstad

      My sweet daughter . .

      As you know, education is powerful. The enormity of Alzheimer’s is all around us. We may know someone right now who has yet to be diagnosed. Your inquisitive mind leads me to believe that no matter how young or how old we are, we are all susceptible to the ravages of an incurable demon that slips into our mind and devours the only true thing that makes us who we are. I have read that Early Onset Alzheimer’s has been diagnosed in people as young as 30. That is more than I can comprehend.

      I’m so proud of you that you would be willing to have that conversation with Kevin. It’s a matter of finding out the from our family the most difficult of conversations – two in particular: “These are the services I want when I die” and, “we should talk about what would happen if one of us was diagnosed with Alzheimer’s. Do we need to look at Long Term Care Insurance now?

      Thank you for your openness and your willingness to learn!

      Love You…

      Momma

      • Chrislyn Coleman

        Momma & Sis,
        Since Alzheimers runs in both sides of my family Bruce and I have had conversations about this affecting us. I have been paying into long term care for the past four years so Bruce and the Kids will not be overwhelmed and burdened with a monument of debt if I am diagnosed some day. Over the years I have watched my Mom go thru her ups and downs both emotionally and financially. I would never want Bruce and the kids to have the financial burden as an added struggle. Love you both <3

        • Patricia Kolstad

          Chrislyn:

          I had no idea of the extend of your knowledge and the very smart decision you made 4 years ago. I am so very proud of you, and impressed by the very fact that you are thinking so much farther down the road. You are a young woman, but because you have walked this walk, you have put into place a plan to save your family the burden of care.

          I love you deeply, and will always wish the very best for you and your family.

          Love,

          Moma

  • Lori

    MP,

    This is one of those topics that we tend to avoid because the unknown is unbelievably scary.
    The thought of those closest to us becoming a casualty of this devastating disease is too unbearable to think about.
    I talk to my mom on the phone every day. Each time she has a “senior moment” and stumbles over a word or has a forgetful moment I get nervous. What if she is showing early signs of Alzheimer’s? I am certain that is not the case, but this disease is so scary that we jump to that conclusion easily when those we love are forgetful or act out of the ordinary.
    Thank you for sharing Barry’s perspective with us. This is a book I will add to my list. I can’t even imagine finding the love of your life, imagining growing old together and that dream being stripped from you.
    Your work in the community to gain more knowledge and educate others about Alzheimer’s is commendable.
    You are an inspiration.
    Love you,
    Lori

    • Patricia Kolstad

      Lorie:

      I certainly understand your fears with your mom. However, the awful life change becomes really apparent when forgetfulness becomes a way of life. I forget stuff all the time – and the very sad thing about that is we tend to make fun of our forgetfulness by saying “I’m pre-Alzheimer or I’m having a senior moment. I would love for all of us to take the time to educate ourselves and become more of an advocate of The Disease, than one who fears it or makes light of it. I gained such a new respect for those who are suffering and those who are caring for their loved one.

      I love your interest in the book. It’s simplicity will bring you to your knees as Barry reveals the effects and aftermath of this awful – non-curable, long suffering hell.

      Love to you,
      MP

  • Thank you for writing this. I havent personally had Alzheimers in my family, but in my profession I have seen many touched by Alzheimers. It is so difficult watching these families deal with this. My heart and prayers go out to them. One of my clients mother in law suffered from Alzheimers in 2006 and now her own mother is suffering. Thank you again for writing such a poignant blogpiece.

    Warm Blessings to you Patricia..

    Susan

    • Patricia Kolstad

      Susan:
      Thank you so much for your comments and thanks so much for following our blogs. This was a really emotional piece for me . . . reading and researching the cause and effects of this disease from hell. And, for me, understanding how it can destroy not only the one with, but the ones who care for and love them. Without warning . . . you are diagnosed. No cure, no time limit. It’s simply devastating.

      The more we know, the more we can support!

      Thank you!
      Pat

  • amy

    Pat,

    Thanks for your dedication of learning and sharing about what most of us think is unbearable. It most certainly is however it is someones reality. A reality we never want to face or believe it would happen to us. It is very true to say until you walk in their shoes do you know. Some are strong beyond belief while others are weak and become overwhelmed and exhausted.
    Education is key for survival I believe. If everyone was as dedicated as you about educating the community how wonderful that would be. Thanks for sharing and opening up my eyes to something that is way more then I thought it was. You are truly an inspiration and I am blessed to work with you.

    Amy

  • Patricia Kolstad

    Amy

    It’s inspiring to think that you and others are opening their heart and their minds and sharing their stories about how it has affected them, or that they never realized what others are going through. We all want to think that it will never happen to us or for that matter, we never think about it at all. We need to be thinking about it and learning more about it because the chances that it will effect one of our own if compelling.

    Thank you for your comments . . I appreciate you.

    Pat

  • Hi Pat –

    You have become a great researcher, writer & blogger. This is a very touching story, that breaks my heart. The lessons of not not judging anyone, even if you have walked in their shoes. The unpredictability of life’s journey is so unknown. Compassion is the best quality we could offer each other. Thank you for sharing this story with us.

    • Patricia Kolstad

      Neil

      This piece has really touched me. As you and I shout from the rooftops to anyone who will listen, it’s education that creates awareness. I was sympathetic to The Disease, but uneducated about it’s power to destroy lives. Barry Peterson put a name and a face on it – and made me realize that it’s so much more than the sum of it’s name. It’s hideous.

      You said it best . . compassion.

      Pat

  • Mary Dedic

    Dear Pat,
    Beautifully written! I saw the same program as you and my response was unlike yours. My father-in-law was diagnosed with Alzheimers before the noterity of this disease reached the heights it claims in today’s society.
    My empathy goes out to the families of these individuals for the courage necessary to deal with Alzheimers on a daily basis.
    Thank you for your beautiful blog.
    Mary D.

    • Patricia Kolstad

      Hi Mary:

      Thank you so much for your comments. For me, it was a very emotional piece. Digging deep and understanding better the realities of it gave me the ability to be compassionate and supportive of those I know who are walking the long, never ending journey. It’s true when the call this Disease the Long Goodbye. Or as Barry Peterson said, “It’s like going to the same funeral over and over again.”

      Pat

  • Jeff

    Pat,

    I am reminded of just how much of life I simply know nothing about when reading your latest offering. There are many “insidious” circumstances in life. Losses of this kind where the person is altered right before your eyes into someone you could never have imagined or rather the absence of the person that you can still stand and sit with though that person is not there. Wow! It is hard to understand or imagine. I remember the alteration in my father after he had a brain tumor removed. The inability to use the trackpad on his computer, confusion and other minor inabilities that began to become apparent were so hard to reconcile when man still stood before you in full form and “normal” physical presence. It is hard to accept. It is hard to not get frustrated with them when they look like they should be able.

    I regret the frustrations I felt and occasionally expressed. Ashamed that I could not be more compassionate and understanding. This was a short season of just 5 or 6 months. I cannot fathom the year after year and progressive incremental decline. I do not want to ever experience what Barry has had to go through. Who would right? I am thankful for the perspective and understanding that Barry and others who are willing to share their struggles are willing to share. This is a very touching and provoking story.

    Blessings to you for reading the book and sharing it with us.

    Jeff

    • Patricia Kolstad

      Jeff:

      Your comments are heartfelt and open. Interestingly enough, as I have spoken to my various colleagues and friends about this blog, I have heard stories much like yours. The anger and frustration that most all of the caregivers feel at one time is real and palpable. That comes with the emotional and physical depletion of their human resources, and their ability to cope with someone who cannot function the way they once did.

      Thank you for your honesty and your willingness to share this with others. It’s so important to put this out there, talk about it, and support one another. Barry needed that and had to search to find it.

      I so appreciate you and the depth of your response.

      Love,

      Pat

  • Carrie Bayer

    Pat, this is a very moving blog- thank you for shining a light on this mysterious disease. Oftentimes, we don’t understand the disease from the viewpoint of the loved ones & this is a wonderful portrayal of just that. Thank you so much! Carrie

    • Patricia Kolstad

      Hi Carrie

      You are absolutely right. Education, as you well know, provides us with great insight and depth into whatever it is we are learning about. It gives us the tools to provide even better care. This Disease renders families nearly helpless as they navigate the care of their loved one. The Alzheimer’s Association provides incredible resources to families who have just been diagnosed, as well as to the community, the professionals, and the lay volunteers and outside caregivers. It’s amazing what they do to inform.

      Thank you,

      Pat

  • Kori Marie Kolstad

    Mom,
    With each blog you write I am continually impressed. You research so well and write with such compassion. Reading this blog about this insidious disease has brought much needed awareness. I really want to read both of those books now. And Chrislyn’s own account of how Alzheimer’s has touched her life and family brought me to tears. The suffering of each family affected by this disease is tremendous. Mom, I love reading your blog. You evoke so much emotion when you write. I love you.
    Kori Marie

    • Patricia Kolstad

      Kori . .

      I’ve had so many of my friends and colleagues click on the video of Barry Peterson’s interview with his wife, Joy, as well as mention that they want to get the book. Our hope when we right is to have so effect on those who are reading it. Whether good or not so good, it’s the awareness and the interaction that counts.

      You will, I know, find a new respect for those families whose lives have been devastated by this terrible Disease.

      Love
      Momma

  • Aunt Pat,
    I have to admit that I knew almost nothing about Alzheimer’s until this blog series started. I knew the most prominent part, that memory was affected and lost. What I didn’t know was the total scrambling it did to everything, personality, speech, and eventually the body. Your opening of this book has opened it up for me as well and I’m so grateful to you for continuing to pass on the pain & horror of this story.
    I’m sincerely stunned by the harrowing tragedy suffered by the family members as they say their “long goodbye”. I can’t imagine the repetitive grief they endure with each visit and proof of the disease.

    Thank you for sharing this with us & enlightening me so that the next time I hear about this disease hurting someone I will have a better understanding, I’ll know what kinds of questions to ask, that they need my compassion.

    You’ve given me an opportunity, knowledge and heart for this long suffering group of people.

    • Patricia Kolstad

      Molly . .
      We are all forever learners in this life. This book has not only opened my eyes to the tragic life sentence that it hands out to families, but has given a name and a face to Barry’s family and friends. He makes his life an “open book” so that others may learn and become advocates.

      Thank you for your support and your willingness to learn more about other’s sufferings.

      AP

  • Pat,
    This is a GREAT post. You are a strong writer…your words are clear, specific and heart-felt. You balanced the giving of new knowledge about early-onset Alzheimer’s with compassionate story-telling.
    Thanks for sharing this needed information!

    • Patricia Kolstad

      Joey . .
      Thank you so very much for your interest in my blog and for the support you have shown for my writing. I am honored to have you evaluate me and provide encouragement.

      “Jan’s Story” was one that I could not put down, and when I did, I had a hard time falling asleep – my mind spinning with the fear we all might feel when we think it could be us.

      I’m enjoying my writing and the opportunity it gives to share life experiences, as well as areas of great concern to me.

      Thank you again, Joey. I so respect your opinions and your writings as well.

      Pat

  • Dear Pat,

    Thank you so much for sharing your thoughts on Alzheimer’s and introducing readers to the books that you highlight here. When a loved one suffers a decline in cognitive function due to Alzheimer’s or another form of dementia, it is truly a loss. Dr. Pauline Boss has written much on “ambiguous loss” of caring for someone with Alzheimer’s, where the person is physically with us but psychologically absent to some degree. Your empathy for Barry Petersen shines through, and it’s true…we do not know what others are going through and cannot judge their choices.

    Appreciatively,
    Marnee

    • Patricia Kolstad

      Hello Marnee
      Your mentioning of “ambiguous loss” has peaked my interest. I don’t fully understand all of the ramifications of Alzheimer’s, but I’m sure you have dealt with that in your practice. It really is a disease that puts families in such a precarious place with their feelings, needs, and their lives.

      Thank you so much for sharing Dr. Boss’s reflections – I will soon be looking her up!

      Blessings to you, Marnee

      Pat

  • GREG FORSTER

    Pat,

    Very compelling writing. Some stories and facts are life situations that must be said,must be heard,must be accepted for what they are, and, certainly, must be felt.
    I have not had the experience of dealing with this disease, but it is a unique one because of the lack of knowledge of its causes. It is one of those that hangs over us our whole lives now that we, indeed, accept the fact as a society that it exists. We put worries about it in the back of our minds. “I’m getting older and sometimes forget names, words, etc…is this just getting old, is it because I worry and am processing/holding on to too many facts/situations at one time, or am I experiencing the beginnings of this unknown mind robber? How do I know, am I getting worse,or am I overreacting?”
    Then we see yet another name of a very vital, intelligent, sometimes gifted person who’s diagnosis is made public (with great courage in my mind to do so). “This person is privileged…smarter than me…has been able to earn/get more out of life than me…is known by so many others for who they are than I am. But they are still not SAFE, they are not in a privileged class that remains above and away from/protected from such a common scenario that affects OTHER PEOPLE.” They could not get or pay for any operation to “just fix this”.

    If they are not protected,what am I to do? Many diseases thru the ages have elicited such fear.

    Knowledge is power and we have today’s science working on it. May we hope and pray that this is another life curse that may one day indeed be put behind us.
    In the meantime, acceptance of people just trying to do the best with what they have is not an option, it is our personal responsibility. The human species remains, as always, a “work in progress”, but, we are making progress and that gives us all hope.

    Thank you,

    Greg

    • Patricia Kolstad

      Hi Greg:

      Thank you so much for your wisdom and your insight that speaks volumes to the fears that we all have with regard to Alzheimer’s. You are so right to say that none of us is “safe” from it. It does not let you know it’s time or it’s length of days.

      Education is powerful, as long as we are not the recipient of the Disease. For knowledge only lets us know that we have no power to fight it. We can only pray for those whose brains function at a level so much higher level than mine, to find the reason for it and kill it!

      Thank you Greg, I always find your words meaningful and nurturing.

      Pat