This is my last post for HelpforAlzheimersFamilies.com. It makes me sad and it has been difficult to come up with just the perfect send off to you all. I have treasured the ability to reach out to so many other caregivers who face each day not knowing what the hours ahead will bring. I have struggled to make sure I share just the right words to encourage and support you for the days and months ahead. There is so much still to say, to convey, to help as processes unfold. Alas, I feel the need to make this one special, maybe just a little bit more personal (is that possible?) and to make sure each of you know you aren’t alone and we are all in this together.

As a reminder, my husband, Jim, passed away from Younger Onset Alzheimer’s in April 2016. He was just shy of his 53rd birthday. His brother and his mother also passed away much too young from this same disease. We have two amazing children who are now 16 and 13. Yes, this horrible fate could one day be bestowed upon one or both of my precious babies. And it tears me up inside every time I think about it. Which is every day. I try not to. I try to live in the present: take each moment of each day and treasure it as if it is a gift to be cherished. As it really is. But I succumb to the human tendency to think ahead, to wonder and to worry. I imagine getting the news that I once listened to with Jim next to me. Only then I didn’t know. I didn’t know what was really to come. I didn’t know the real truth of what Alzheimer’s looks like up close and personal. Now I do. And the thought of being so helpless again, with part of me facing a disease with no hope and no good support system from our government, makes me nauseous, scared, and most of all: determined. Determined to do whatever I can in this moment to make a difference in the future. Determined to use my talents to raise funds for research, as I am certainly not going to be in a lab doing experiments. I so wish I could, but I am not scientifically minded. I will continue to speak out, speak up and speak loudly about the issues facing families with dementia. We are a large group, but a mostly silent group. It is imperative to change that so we can change the trajectory of this disease. And yes, it is personal. Would I have this will, this passion and determination, if my children weren’t facing the same fate as their father, uncle, and grandmother? I would like to think so. But in reality, I don’t know. It doesn’t matter. I am here and not going anywhere.

I am not sure where my path will lead next. Being a mom to Frances and Brad is number one. Charting a new course for our family is difficult solo, but many people do this and do a fabulous job. I plan on being one of those people. I have never had to support our family completely by myself. This past year I have realized I was still waiting for Jim. Waiting for him to help me pick up around the house like he always did. Waiting for him to work out in the yard like he always did. Waiting for him to talk to the kids about something he knew so much about or had a different perspective than I did that would benefit the kids to hear. Waiting for him to rub my back or hold me close. Waiting for his laugh to brighten a rough day. Waiting for him to organize the garage or the shed. Waiting and waiting…

Slowly, I have gotten the subconscious mind, that has been trained over many years of marriage, to start to rewire itself and to understand I don’t need to wait. I just need to do. On my own. By myself. For me. For our children. For my sanity. For my future and our family’s future.

I think it is common for caregivers to get stuck in a day to day plateau of just dealing with whatever they have to deal with at that very moment. Then when the caregiving is done, they are left with a completely different landscape of their lives. They are no longer in the realm of who they were before caregiving, and there is no going back, they are no longer a caregiver, which took up all of their mental and physical energy and now they are…? They are left to comprehend all that has happened, find new friends, new jobs, new homes, new lives. It takes years to work through all of this. I am just coming out of a fog and the realization that Jim is no longer around to be part of our world. Even though he really wasn’t for quite a while before he passed away, the finality and the depth of loss is immeasurable. To make it quantitative and comprehendible, the layers of loss have to be worked through piece by painstaking piece. This will take an indefinite amount of time and personal commitment. I am not sure I will ever truly work through all that I need to.

I am seeing two counselors. I am exercising multiple times a week. I am keeping extremely busy and on the go. I am reaching out to old friends, making new friends, and keeping the ones that have been by my side all along.

One thing that I have not been able to do is read. I used to read all the time. Books, articles, anything of interest. I haven’t finished 3 books since two years ago. I start them and don’t finish. I was always the type of reader that I finished a book, even if it wasn’t very interesting. I just couldn’t not finish. Now I can’t seem to finish. And sometimes I won’t finish a movie. Again, I always watched the whole movie, even if it was terrible.

So there are differences. But there are also many parts of me that remain. I am strong. I am committed. I am true to my word and honest with my heart and my words. I am driven and determined. There is work to continue. There is fight left in me. For our kids. For myself. For all of us.

Please continue to reach out to me through my website: www.missingjim.com. Thank you for all of your love and support over the past three years. What a difference it has made. I am so very grateful and humbled.

17 thoughts on “Sad to Say Goodbye

  • Liz Brewer

    As a teacher, I respect the gift of writing so much. Karen, you have that gift! Please continue to take us “beyond” the disease as you feel comfortable. It seems to me like we are old friends, sharing life’s circumstances and supporting one another. As I read your words over the years from almost day 1, I learned from you and felt compelled sometimes to write a response, hoping that at least knowing I cared would give you a lift in your day. I shall continue to watch for your words and I thank you for all you have become to me!
    Liz

  • Brita Mizelle

    Thank you for all you have done for the rest if us.

  • Carol Ferris

    Karen,
    You continue to be an inspiration. Meeting you online has helped me find my voice as a caregiver of 2 parents with Alzheimers. My mom has just passed away after 9 years dealing with this disease and my Dad is on year 6 and in late stage. I am terrified that I will be its next victim and burden my family as well. To try to maintain perspective and feel like I am making a difference in the world of Alzheimers since I can’t cure Dad, I have begun to share my journey at NC caregiver conferences and have miraculously found my voice and passion. Caregivers need every possible voice to speak for them and share what an arduous and heartbreaking journey it is living through this dreadful disease with friends, family, neighbors, elected officials and the medical community. Caregivers are a painfully underserved population. They are far too overwhelmed with caregiving 24/7 to do anything else but exist, so I try to make a difference by bringing them my message of hope and understanding as you have done for me. Good luck Karen, and God bless you and your family as you regroup, redefine and replenish your lives and hearts. Peace. Carol

  • Pam

    Karen, thank you for your message, the work you have done, and will do in the future. You have been an honest, courageous and kind voice – as wife to one with younger onset I have looked to your example – in admiration, hope, and frankly terror. A terror that all in our position have to face, can face and will face.

    Best to you in life.
    Pam

  • Phyllis Gallagher

    Thank you Karen, you have been an inspiration and my hero! My husband is still alive; not walking, not talking, just there. It is heartbreaking. I am continuing my Advocacy work. I have to change something.
    Love you all the best

  • Dana Turner Lagarde

    You were an amazing woman before all this happened Karen and now you are so much more❤️ I am proud to be your friend.
    Love you! Dana

  • margaret Janssen

    What an encouraging letter from you Karen, I just finished talking to my husband on the phone (he has Vascular Dementia) and he is in care. Believe it or not he was encouraging me, as I was crying on the phone to him, you see I am moving on 18th Jan.2018 from my daughter’s home to an Assisted Living Apartment and I am so scared to live alone (I am an old lady 87 years). Please pray for me………Margaret Janssen.

    • Kathy

      Dear Margaret, I pray you find a way to look at your upcoming change in a positive light. Will you be with many other people? Are there scheduled activities? I urge you to take advantage of them and to reach out to make new friends. Yes, change is difficult at any age. You are valuable! You might bring sunshine to someone’s day who needs it, with a caring ear and heart. And remember to allow others to do that for you too.

    • Ann Hestand

      Margaret, your comment touched me deeply, I will hold you and your husband in in my daily prayers.

      Ann

  • Elaine McCullough

    Thank you for you for your letter. Our mom passed away January 13 ,2018.after 10 years living with Alzheimers. Her last year of life required 24/7 care. I was so lucky to have 2 sisters that helped in her care. We tried to get support from multiple agencies,but resources were very limited. The last 4 weeks of her life were very difficult emotionally and now we are in a fog . I’m afraid filling the void is going to be more difficult that I can imagine. I’m glad we kept our mom at home till the end of her life with everyone and everything she loved. Hope our family finds peace in our hearts.

    • Andrea

      Elaine,

      I can not imagine how hard this must be now. I know it must be very hard to talk about these times. However, I would like to ask you for some help. My mother has Alzheimer’s, and I want to keep my mother with me in my home through her end of life. I am an only child, I have recently spoken with hospice in casual conversation on assistance. The impression I have is that they may decide to move mother to a rest home over an above my wishes, and they can with one hospice nurse and the rest home doctors designation. My mother is comfortable and happy with me. We see her doctor regularly, and have been doing just fine. Although it will be much harder as we venture through her last stage. I do not want my mother in a rest home for any duration of time, did you need any additional nursing support in the last year? If so, where did you find your medical support.
      Thank you

  • Sandy W

    Thank you Karen for sharing your and Jim’s story. It’s helped me get through some of the tough stuff that my family has experienced with my mom’s journey with Alzheimers. Wishing you and your kids the best.

  • mary

    Karen,
    I come to you late. My daughter just forwarded a page from your book that was printed in a Guidepost issue. I came to your site to request the 3 free articles, but I see it may be too late.
    My husband (age 90, I will soon be 77) is in his 4th year of Alzheimers, having been diagnosed at “early stage”. I attended an informal support group at a local church a few years ago, but the facilitator has relocated. I attended one support session at a nearby hospital, but received nothing to hang my hat on in the way of support.
    I read articles describing the signs of the disease and sometimes feel that I may also be one with Alzheimers. I am the one who is irritable, short tempered, depressed. He is “content” silently reminiscing or spending time in prayer.
    I want to keep my husband in familiar surroundings as long as possible. We are at least an hour from our nearest child. They are all supportive of both of us and of each other, which is a blessing.
    I find that we are not invited to social events, but are active at our church activities. My husband is not interested in outside activities during these winter months. He sleeps 12 hours a night and many hours during the day. He “watches” TV but doesn’t comprehend what he hears or sees. Our personal communications are rapidly declining. Some days we hardly speak to each other without bickering.
    We live in the Big Rapids, MI area. Do you know of any support groups in this area? Thank you for reading.

    • Immersion Active

      Hi Mary. We’re sorry your family and life have been touched by this terrible disease. Consider checking out your local Area Agency on Aging for caregiver support and respite opportunities, and also your local Alzheimer’s Association chapter. You may also find this page on our site helpful, which holds many tips on activities and engagement for a loved one with Alzheimer’s: https://www.helpforalzheimersfamilies.com/learn/quick-tips/activities-and-engagement/. Many of these tips can be done inside when the weather is too cold. Sending warm thoughts your way!

  • Wendy

    Karen,
    You sound amazing! I pray that you will continue to heal as your family faces the new normal.
    My family has been plagued by dementia and I see my brother heading down a similar path, a path to dementia brought on perhaps by his alcoholism. It’s painful to see and because we don’t live in the same Province, it’s difficult to help on a daily basis and he wants to keep his condition as a closely guarded secret.
    This may not be right but I continue to mourn his loss each day and look on helplessly. He does not want help but instead is pushing everyone away.
    Thanks for giving your voice to this disease which affects each and every family member.

  • Cliff Whittington

    Karen
    Your a beautiful lady inside and out @ I Appreciate your Goodbye

    My wife got diagnosed with Front Lobe Dementia at Age 53- she is now 57 – it has been the toughest and longest Years of My Life. I met and married her at Age 16, and I was 19, we have been together 41 years and have 2 Sons and 2 Granddaughters.

    Most people/spouses/family’s have No ideal what you mean by saying the ‘the Truth of what this Illness means Upfront and personal” until you actually Live it. I’ve had many Clients/friends/family members say “the Good Lord will not give a Cross to big you can’t Carry” – I for One would like to Say with this Sickness “the Lord will not give your FAMILY a Cross to big you can’t Carry as a Family”- no matter how many years you have known and Love this person with Dementia/Alz. No ONE spouse or child or family member can Carry this Cross WITHOUT Everyone. It seems to me in Our Family anyway, this terrible discease will EITHER bring your Family closer OR Tear it apart. I hope you All the Best in the next Chapter of your Life. As for me, we’re moved into the Late Stages with DeeAnn -still doing All I can to keep her at Home & comfortable -but the daily grind of the Upfront @personal of What it really takes 24/7 – is Crueling. I respect what you have went though. Sincerely Cliff

  • Edward Ingram

    I lost my wife after 62 years of marriage to Alzheimers and I am living alone ever since; I do have a care giver 8 hrs a day because I had long term insurance and I am so glad I kept the insurance for years.

    I did fall and break my hip and arm but I am thankful for God’s help thru all that.

    Just stay close to God and he will help you through all your journey.

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