Survival of the Fittest

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

It has been 6 long years since we first started figuring out something was “wrong” with Jim. To some, this will seem a very minuscule amount of time. For us lucky ones, living and enduring the torture, it will seem an endless amount of time.

When a person loses a loved one, they are forgiven their lapses of judgement. If they forget to say “thank you” or don’t have their home kept up or they don’t seem themselves…it is forgiven and they are encouraged to keep moving forward. If they get too drunk too often, they are forgiven. If they seem short-tempered or completely out of it…they are forgiven.

But I ask myself daily how much time and indiscretion should I be allowed? Will I be forgiven for being a louse for 20 years? When is enough enough?

Jim is not dead. Jim is not alive; not in the sense of who he was, how he once lived and his being. His great attitude and his constant desire to continue to help is amazing. His sense of humor still shows at times and takes us all by such surprise, it is a present wrapped in a perfect package. So, he lives, but as a new entity in our world. One constantly changing and now needing more and more help. I am so grateful for his fantastic way, his attitude blesses us even as his mind fails him more and more. I grieve him. I have lost him on so many levels, so many times and our children have grieved with me. Our friends have cried with me. Jim has cried. He is losing many cognitive abilities.  Almost daily something new disappears. Handwriting. Speech. Dressing. Hygiene. Emotions. I stand by helplessly beholding the changes in him, yet missing the strength I would normally steel from him. I no longer have his support, his guidance, his assistance with the kids, the house, with finances, with life….yet, I am told all of my shortcomings are understandable and I am encouraged to drink more, speak freely, be the woman who has lost someone, let myself go and suffer the pain….yet I wonder how long can I sustain this? How long am I allowed to be grieving, to be less than I should and can be?

I am better than the person I am right now, yet I cannot manage to find my path to ME. The me Jim helped me become. The me WE were. I am unable to concede I must figure out who I am alone, with him sitting by my side, while searching for and needing the me I must become without him. The way I miss him is still raw, though I have become more accustomed to being the sole “adult” in our home.

The road I travel at the moment is a most treacherous one. I can slip and become a lost soul that will somehow be forgiven. I have an excuse to be less of a mom. Less of a wife. Less of a woman. Should I succumb to the darkness the lurks each day, it will be said I was a good person, but it was all just too much for me. There will be excuses to explain my fall. But I, I, do not accept those excuses. I do not accept the opening to allow myself to be someone I know I would abhor under normal circumstances. I am fighting not to lose who I should be to hard times, difficult circumstances and a pain that could kill a weaker soul.

I face my demons and my struggles each hour of each day. I struggle to make the right decisions solitarily. I hesitate to move onward while holding the hand of the man who pushes me forward as he holds me back. The constant metaphors in my life shout out to me constantly. I never know if I am making the right decision or if I am not making a decision I should be making or if I am just failing our family, one choice at a time.

I know Jim’s disease and decline and eventual death are NOT my fault. (Although there are times I have survivors guilt, but that is a whole different chat) But the effect of everything relating to our journey lies squarely on my shoulders. There is not enough beer in this world to lesson that burden. The fact my children witness their father dying a little more each day does not slip past my view. The fact I am responsible for not only their physical wellbeing, but their current mental health and their future mental health and their daily meals and their education and the normal parental scope of dealing with life in the adolescent years and money issues and friendship issues and something as minor as what to wear and who isn’t speaking to me and who didn’t do something and I really have to clean my room and do the dishes NOW???? There are times I just want to walk away. I just want to disappear into the night. But I have nowhere to go. There is nowhere else I would rather be. I want to be here with the two people on this earth who think I matter, who they look to each and every day to love them and make them feel as if the world doesn’t completely suck. It is hard to see when immersed in the trenches, but when I am really downtrodden and at a low of the low points… somehow I am able to see the miracle of the love my children and I share. The closeness, the stories, the history and the promised future. I can see the need they have for me to be here, even if I don’t really feel like it. Even if I am hurting in my adult way of missing a spouse and partner. They are missing a Dad, a parent, a confidant. It is unacceptable for me to put my own needs ahead of theirs for too long. Yes, 6 years is starting to feel like a very, very long time. But our journey has no end. Even when Jim is no longer with us, we will still be alone, without him. We will struggle to recall his stories and keep his memory alive. The trick is to start this all while he is still living, without allowing the weirdness and the emptiness to keep us from grieving. We will mourn, and we will cry and share our stories and we will live in a holding pattern for as long as we can. At some point, we will have to let go. I don’t know when that will come. I don’t know if I can manage that long. I hope I can. This is a most difficult path and a most painful journey. I am not always sure I will outlast the fountainhead. If I don’t, my children will have learned the most valuable lesson of all…survival of the fittest.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

14 Responses to “Survival of the Fittest”

  1. Renee' says:

    It is so difficult to know what to say. I hesitate to give advice because everyone’s journey is different. But I will start off by saying you need to be kinder to yourself. It sounds like you are doing everything you can right now to keep the family together and be as “normal” as possible. When I look back on my journey with my husband I shake my head and wonder how I did it. Working full time and coming home to relieve my sister to take over until 6AM the next morning when I left for work again. But we only had 2 1/2 years together after he was diagnosed. Yes, 6 years is a long time for early onset. A blessing he is still with you and a curse because it seems there is no end to the daily agony. I believe there is no “right” way to travel this road, I learned early on there was no next week, next month or next year for me, all I could do was concentrate on today and tomorrow, thinking about further into the future was overwhelming. Don’t let the pile of dirty clothes or the sink full of dishes make you feel like you are not doing a good job of taking care of the household. I realized about the end of the first year I was no longer living my life, but I was living his life. Everything was about him and for him. I know I was going to have the rest of my life to do what I wanted to do, so I concentrated on him, tried not to lose myself in the process and knew that one day I would have all the time in the world to wash those dishes and do that laundry, but I would never have another day with him. It is a most painful journey with no happy ending, I’ll keep you in my prayers.

  2. bridget says:

    Your journey mirrors mine with my husband. I pray to be strong but it is so hard.

  3. Connie Howard says:

    It has been 7 years since a formal diagnosis for Glenn no 59 years old. We noticed problems 4-5 years before that. In December, the decision was made to find a facility for Glenn. He has been in 5 facilities with even the last one not sure about dealing with his outbursts and cussing as it was disruptive to other residents. The last one agreed to keep working with him. It has been a huge blessing having him taken care. I received a call today that his breathing is becoming a problem and this normally occurs in the last 2-3 months of life. Prayers as I navigate these next several months with Glenn and my two children 25 and 27. While I know his heavenly home will be so much better, the finality of his death will be difficult. The journey has been long. For so many years I was his caregiver with the role of wife being secondary. Since putting him in a facility that is caring for him so well, I have been able to love on him and share in his journey home.

  4. Jill says:

    Karen, you know that I have followed you on FB pretty much since start you blog.
    As to grieving we somehow did this while Mom was still her. it made the final breathe I was responsible for arrangements. I learned a lot about what to do duing my families. Talk to the boys and see if he has memories of them – have tthem use Dad each time they enter the room.
    Is he still eating ? (not just sweets) mom lived on chocolate anything daily.
    Can he handle personal care? (a shower, toilet needs, brushing teeth.
    I have had a breakdown in January 2013 because I didn’t take care of myself.
    {{{hug}}}

  5. Marilyn Klotzer says:

    Karen, my heart goes out to you and the children and Jimmy. Such a sad thing to happen to my friend from the time he was born.his Mom was my best friend and watching her go through it was heartbreaking. Love to all and please God strength to get through the disease. Love Marilyn

  6. Carolyn Edwards says:

    We both walk this journey, one day at a time. I can look no farther than that. Blessings.

  7. Paula Ormes says:

    Thank you so much for sharing. My husband has been diagnosed with FTD for 3 years and I noticed problems several years before that. I am 50 and he is 55. My children are 18 and 22. I anxiously await each of your posts. You are able to put into words exactly how I am feeling. I so appreciate your honesty and rawness. Thank you so much for letting me know that I am not alone in this horrible, life shattering journey. Hugs and prayers to you and your children.

  8. Connie says:

    I became a caregiver when my husband was 54. I can’t feel sympathy for those in their 70’s and 80’s who have this disease. I do feel bad for them as no one should have to suffer like this. I hate this disease. It robbed me of my husband of three years. He fought for 7 years. Now I am sad and lonely in Dallas.

  9. Karen, when I read your blog I relive the early stages of Joe’s Alzheimer’s. When you wrote that Jim is not dead or alive that describes Alzheimer’s. Since Joe left this world after 11 years I too feel dead and only partially alive. Without my husband who fulfilled all my childhood holes I will never live again as I once did. I am lost in this mire of widowhood. We don’t prepare ourselves for ageing, losing our independence and living alone. May God hold your hand until………………and hold your children on his lap.

  10. JOAN says:

    Your blog is real Karen and it helps me.As I drove home from work the other day I thought how lonely
    will I feel when he is not there and I’m all alone..I lie in bed , it seems normal till I look at him beside me and know his brain has deteriorated badly.I reach for his hand to hold on to.Living in limbo till the next decline,it’s one day at a time.Even though it’s too late for us I.hope for a cure soon.

  11. Lee Ann says:

    Just remember and tell yourself daily that you are an imperfect human, just like the rest of us. Only superhuman people are allowed to be perfect. You are doing the best you can, and that’s all you need. make sure Jim and the kids know you love them dearly, and with everything else, do the best you can. And don’t kick yourself in the rear for being imperfect. You are doing great.

  12. Dana Lagarde says:

    You are amazing Karen. Funny how we are at our strongest when we feel we are at are weakest. I am speechless to your honesty, strength and love. If there is anything i can do please let me know. In the meantime, i will keep you and your family in my prayers.

  13. Debbie says:

    Dear Karen,
    We will make it. I walk this road with you and everyone else in our situation. We have to make it, no choice. You are very strong and you give voice to so many who are feeling the same. Thank you and I will be praying for you as well. My husband was diagnosed in 2012, but several years before, there were signs. just thought it was because he was not working, got “rusty” but it turned out to be so much worse, never even knew of early onset until then.

  14. Brianna says:

    Please reach out to me. My husband is in the he late stages of early-onset Alzheimer’s. he is 40 and I am 36. My kids are 4 and 8. I am so afraid to look into the future because I have no idea how I am going to do this. I feel like I am all alone and do not have a support group ! So I want to know how you coped!

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