Oct 302014
 

In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.vk1

In Vern’s Words

I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.

I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.

I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.

At first I didn’t want to share my diagnosis with others.  I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.

My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat.  She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.

In Karen’s Words

Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.

I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.

I have found the Alzheimer’s Association website alz.org to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.

I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.

When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.

Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.vk2

Vern and Karen’s story continues. And they are not alone.

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.

Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.

 

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  37 Responses to “In Their Own Words”

  1. Beautifully written, Karen and Vern. Having been my husband, Gene's caregiver thru cerebral dementia, I have an
    idea of what you are both going thru. I admire you both so much for doing this website and for trying to help
    educate others about this disease. It remains one of my main charities. God bless you both – you are always
    in my prayers. Dee

  2. I recently had the honor and privilege of meeting with Vern and Karen and spent a precious few hours listening to them share about their personal experiences. The contributions and sacrifices that they have made in their lives (and are far too humble to share publicly) are typical of their willingness to face this new challenge and help others regardless of the personal cost. May the Lord strengthen both of you in this time that, while embracing this trial as you have chosen, you may continue to lift others not as strong.

  3. Vern:
    was a high school teacher, a VP of a community college, a court appointed child advocate, a newspaper reporter, a nation wide Red Cross Volunteer, A driver for Meals on Wheels, A runner of 15 marathons…the list goes on and on…

    Paul & Elvira Flanagan

  4. It's a tough journey. I've been down that path for 7 years with my dear husband, a retired USAF Colonel. Unfortunately, he's now in a nursing home but we tried our best to live as normal a life as possible. Blessings to all who are walking this walk.

  5. Way to go Vern.
    Do join in our discussions on alz.connected.

    And it sounds as though you already doing much of what we Early Stagers call Best Practices.

    Enjoy your year on ESAG.

  6. Great story. I believe staying active together as they are is probably the best thing care partners can do to fight back against the disease. I wish there were more like you!

  7. I really respect your decision to speak out and volunteer, participate in Alzheimer events and go to support groups. My Mother-in-Law recently passed away from Early Onset Alzheimer's after being diagnosed for 7+ years. Unfortunately the word Alzheimers was not often uttered, almost as if it were a curse word. And even if it was, they called it Al Heimer, so that by not mentioning it, it wasn't so bad. My Father-in-Law refused to take advantage of the Alzheimer's Association benefits for care givers and family, but often expressed frustration that he may have been helped by being connected to the Alz Asoc. Even at the end he refused to say that she died of Alzheimer's, wouldn't let us request donations for the cause, wouldn't allow an autopsy to confirm and help scientists learn more to help in further prevention. This is very sad as my Mother-in-Law's Mother died with Dementia conditions present (probably Alzheimer's) and with 4 children who could possibly inherit the disease it is heartbreaking that her death couldn't at least help others in prevention related treatments. Thank you both for all you are doing to help in hopefully finding a cure!

  8. In my part of the country," Wisconsin", Memory Cafes are becoming an important link for those in the early stages of dementia. Simply put, the Cafes, run by dementia trained volunteers, are a social gathering place, completely free, for people in similar circumstances along with their care partners to meet, sharing fun, music and activities. Guests can relax and be who they are, without fear of embarrassment or the unfortunate stigmas often attached to mental illness.For anyone considering opening a Cafe the Alzheimer's Association may have information. If not please feel free to contact me on how to get started.

  9. Very nice story.
    I had no idea that it was Alzheimer's in the early stages for mom as she was 80 and memory loss was expected. It wasn't until an almost critical incident that could have caused her real harm did I get past the denial that there was more wrong then just some memory loss.
    Looking back and knowing what I know now, I do see the patterns that indicated she needed help and more care then what she was getting. It is important to be aware and educated. Thank you for stepping up and educating those through your stories and daily trials.
    Mom is happy, safe and we gathered together as a family and were able to spend a few more years enjoying her, learning about the stages of Alzheimer's and adjusting as a family of care givers accordingly.
    I do believe the extra exercise, a change in diet and vitamin supplements and mind stimulation and how we communicate with her has given her and us the extra time together. She is in her last stages and though it is hard at times, the support system we have in each other as brothers and sisters and within our community and the Nursing staff who continue to care and educate her and us is amazing. Just reach out and the support is there.
    Best of wishes to all
    Emily

  10. early stage of alzheimers we can plan somehow deal with how about the end stage which is terribly cruel and needs the strength of goliath for caretakers to deal with it is a cruel disease with no cure in sight except lots of publicity. I hope and pray that a cure will be found in the very near future please G-D.

  11. Thank you for sharing, Vern. I have dementia starting but don't know what kind yet. Wish there was a support group close to where I live,.

    • You can locate support groups in your area here: http://www.alz.org/apps/we_can_help/support_group

      You can also speak to a professional 24/7 through our hotline: 800.272.3900

    • You are right. We do not know where to go where support groups are not available. Is there an On line service using internet where we can post questions and get some guidance ??

    • AlexandraAmen!Sometimes I get down about the fact that I still can’t figure out what tiggrers what symptoms and it seems like my body can’t digest anything perfectly, but when I read Peggy’s posts I feel so much hope, because I see that it can be done. No matter how hard it is, the solution can be found and perfect health can be achieved even by the most problem-ridden of us.The people who are taking offense at this are either in denial about their own bodies or are healthy with the version of paleo they’re doing and just missed the point of the blog altogether.

  12. What a great story and thank you for finding the courage to speak up and help others. When my Mother was first diagnosed I was very much in denial. In fact, I argued with anyone who spoke the words "Alzheimer's Disease". Now she is in an assisted living facility and I share it with everyone. The disease needs more focus to raise awareness and increase research funding. By being vocal you are doing that Vern and you too Karen. I personally thank both of you.

  13. It is very nice to hear your story. My Aunt has recently been diagnosed with dementia and is struggling to accept it. She has pulled away from her family and her personality has changed. I am her niece and caregiver and i am learning all i can about Dementia and Alzeheimers. I hope that one day my Aunt will be able to understand her condition and try to be positive about things. Your story has given me hope and encouragement. Thank you & God bless you and family.

  14. I love this story. A year and a half ago my father passed away of a heart attack. He never mentioned that mom had problems with her memory to me. I am an only child and so was my mother. A week after daddy passed away mom fell and broke her shoulder and had to have surgery and I had to take off work to stay with her. It was then that I noticed the problem. I have since had to quit my job (by choice) and take care of her. The doctor told us it was alzheimers and that she has probably had it for 6 year or more. These stories make me smile and know that it will be okay.

  15. My sisters and I care for our mom at home with Alzheimer's. She was diagnosed at the age of 73, we celebrated her 85th birthday 8/15 this year. It's difficult but love keep us going, we are giving back to her what she gave us. She is the BEST mother!
    We would welcome a support group!

  16. Dear Vern and Karen, your story rips my heart out because my husband was diagnosed 4 years ago — misdiagosed actually — and he still is in denial. He blames me for everything. He has some sort of dementia, if not Alz , but won't admit it, won't seek help, thinks he doesn't need it, it's all my fault. He'd be okay if he had not married me. Our 5th anniversary is Sunday. We don't have a long history of trust to rely on.

    I also have copd, so it makes it harder for me to help him because when I'm having breathing issues he takes it as rejection. His hearing is affected — as is his ability to comprehend words, so I rarely get a chance to explain in a way he can comprehend. He is emotionally abusive, torments and mocks me, and all I want to do is run. If anybody ever needed help, we do. I am on the verge of walking away.

    I am reading between the lines that you had some problems like ours in the beginning. How did you get past them? Why does one person accept the dementia when another doesn't?

    • Hi Linda,
      Your story reminds me of my story. My husband and I just celebrated our 4th Wedding anniversary and we don't
      have a long history either. When we were on vacation in "2012" I noticed many signs of Alz. or Dementia. I mentioned it
      to my husband and he said that there was nothing wrong, but I knew better than that. The reason I noticed on our vacation was because he works at nite and I work during the day and we only see each other on weekends and on our vacation we were together 24/7. He wouldn't go to the doctor cause there was nothing wrong so I decided to go the the Alz. organization and talk to someone who could help me understand what was going on. They told me that he might have FTD (Frontotemporal dementia. But they didn't know for sure because he won't go to the doctors because nothing is wrong. And to this day he still won't go to the doctors cause there is nothing wrong…Everything that ALZ. told me regarding FTD he has all the signs . A lot of what you're feeling is how I feel many times….. And it's so hard not to
      take what he says to me personally…. A couple of his kids blame me because he has changed and his kids say it's
      because he married me. His kids have no idea what I go through everyday…..They are clueless. It sounds like you are going through what I'm going through. I would love to email you or talk to you on the phone…..I think we could help
      each other in many ways.
      Take care

      • Mary,

        Thank you for posting your story. The Alzheimer's Association 24/7 Helpline provides reliable information and support to all those who need assistance. Call us toll-free anytime day or night at 800.272.3900. You can also find resources for caregivers and care partners here: alz.org/care

    • Don't give up!! Try to find a care givers support group in your area. My dad had alzheimers and my mom was his care giver. She placed my dad in a nursing home which still today is the hardest thing that a daughter has to witness. It was like they were divorced but not really just living in two separate places. If my mom didn't do that, then she would have been the one who failed in health. I am fine now and so is my mom is fine. My dad only lasted 6 months in the nursing home(well memory care unit) before he died Please get help, My dad was sort of abusive and once he tried to hit my son, his grandson for being in the way in the kitchen. That was the cue my mom needed. It is so very hard. Everyday is a struggle. There are also Adult Day Care Centers that can give you relief. Try your hardest to find a support group. That is what helped my mom the most.

    • Dear Linda, My story is similar to yours. My wife has had Alz for 4 years now. She has tried to hide it and has done well interacting with other people. And of course I have helped her some by doing everything for her. This is such a horrible disease. As a caregiver, I hung in there until she no longer knows me. She has been in a mental hospital for 3 weeksl We can not find a home willing to take her because she is on a 1 on 1 with a nurse around her always. There are very few beds available also. In hindsight, I should have had her admitted earlier and maybe she would be where she is taken better care of, but after 50 years of marriage, I just could not do that. It is a nightmare that I hope we as caregivers will get through. Good Luck

  17. Thank you for all your volunteer work. There are so many that do not understand alzheimer's. My husband has early onset
    alzheimer's and yes we didnt want anyone to know at first. He is 64yrs old and was diagnosed 4yrs. ago. He owned his own
    architectural firm and life was going in the right direction. I feel so sad inside that our grandchildren will never, really know what
    a wonderful christian man who loves his family. I am also the care partner working full time and trying to care for my husband. Our future has certainly changed. I pray that the public will become more educated about this horrible disease. Fund raising is so very important to finding a cure.

  18. You both are wonderful individules.god be with you and your family as he sees fit.

  19. Vern and Karen, You are an inspiration. I lost my mother in 2013 from early onset and we, as a family, braved it as courageously as we could but not nearly as courageous as you are. I admire your strength in speaking publicly about it and for sharing your story. You are doing more for advancing treatment and advocacy in sharing your story than you may be aware.
    In admiration,
    Mary

  20. What a great contribution Vern & Karen are making for the good of others!….I read an awesome book "The Forgetting"…..I wish I had read this prior to my dear sister-in-law dying from Alzheimers. I was amazed how little I understood about the needs of these individuals & also the needs & sacrifices of the caregivers. I know that children of the patient have no idea the stress put upon the caregiver!…….thank you for sharing your experiences so that we as a public can become more aware & more considerate of their needs…..

  21. It is very courageous of you both to share story. Thank you for taking your time to bring awareness to this horrible disease that affects every aspects of one's life.

  22. Is there anyone out there whose loved one has early stage Alzheimer's with logopenia ( word finding problems)?

    • yes I do! I have problems finding words which is hard work for me and whoever is listening to me, sometimes they will finish sentences or words off for me. Also I have a problem making my own 'words' up . eg passing a nice strip of green verge in the sunshine, I said awww that grass needs 'beezling???? (cutting) lol I don't worry about it as I can't do anything about it but laugh it off! And I sometimes speak as if all the vowels were taken out of my word before the word left my mouth. ! Did that help??

  23. My Father-in-Law just passed from alzheimers complications. Suddenly – and we weren't expecting it. He had been moved into an assisted living home and was actually doing very very well. Then in the middle of the night we got the call. He was such a loving and kind man and all who knew him will miss him. I am devastated. I loved him like my own father. I wish everyone could just send in a dollar to the Alzheimer's foundation –
    I just want everyone to know that if you need information or help or anything – this is the place to come, kind gentle people like Vern are out there needing our help to spread the word. We all can make a difference. We just don't know if this will enter our own lives and we all should be searching for a cure or some sort of grand treatment.
    Thank you everyone out there like Vern and Karen for getting information out there. You are truly appreciated.
    Sincerely Karen Robbins

  24. Thank you for your post. I lost a husband to Alzheimer's disease. Later remarried and my husband has been told he has Alzheimer's disease. Experience from my first go around should be useful. Reading your post has helped, too.

    God bless you and all patients with AD and their caregivers.

  25. Mom, at 91 (last year) was diagnosed, after a lengthy, day-long evaluation and battery of tests, as having cognitive/memory losses strongly suggestive of Alzheimer's. Her Doctor suggested Meals on Wheels, support services such as a day worker to come in and help, a day center where she could stop by and enjoy activities. She refused everything – adamantly. So, I saddled up and waded in. I have been going out to visit her three-four times a week, bringing groceries, and spending huge amounts of time on my cellphone (she forgets that she has called me moments ago). Now after a one-year-down-the-road repeat of the tests it is clear that she can no longer live alone. She is taking it very hard, indeed. Our resources are modest so my sister Val made the generous, brave decision to have her move in – for the time being. Mom's suspiciousness, anxiety, temper outbursts and hallucinations are all taking their toll on us. But, as a longtime reader of many Alzheimer's web pages, I am now searching a support group in our area (downtown NYC). My neighbor Joan, when I first mentioned mother's AD, suggested at the time, I look for a support group. Her husband has fronto temporal dementia. She says that group became a precious help for her in those sad, early days. It is true that you can feel bereft, despite your best, most loving efforts and energies. And it is important to know you have others to talk with, to turn to, to laugh, cry and share. As we move mom along to HER next step – support group will be OURS!

  26. Early-stage, early-onset, young Alzheimer's, all have one thing in common: they represent the "honeymoon" of this disease.
    [I am caregiver to my wife, now in the late-stage of this horrible disease that strips away both intelligence and personality.] The "for better or for worse," and, " ' till death due us part " vows will be tested to the limit. Support will be, and must be, an essential ingredient for the survival of the healthy spouse. We can learn much from Vern and Karen, yet it is imperative to remember that each journey through this disease, like any good marriage, will have striking similarities but will also contain particulars that are quite unique to each family situation and relationship. Another excellent website for support, as is this one: http://WWW.commonsensecaregiving.com. I wish all of you the most pleasant "journey" possible. AJHJR

  27. My husband has demencia. He has begun to look in the mirror and not recognize himself. he says we have an employee in the house. Any suggestions as to how to treat this. He has also started talking at night and waking me up.

    • Miriam,

      Please call our 24/7 helpline at 800.272.3900 in order to speak with a professional who can help advise you in your situation.

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