There is No Replacement

Martinique. Dec 1999.

Martinique. Dec 1999.

Words sometimes fail me. I search to find the right expressions to convey thoughts, feelings, dilemmas, struggles, pain, gratitude and so much more on a daily basis. Oftentimes I can go through a varied amount of emotions in less than ten minutes. My thoughts move rapidly from one thing to the next, seldom stopping to absorb the impact before rushing into the next viewpoint.

How do I handle the stress and pressure I face daily? I sleep. Way too much. I sometimes try to talk to friends, but there is only so much they can relate to and so many conversations about the same topic that can be had before they disappear. I write. I used to work out. I drink. I watch too many episodes of shows late at night. I listen to music. I read. I have never felt so alone while being so loved and supported.

Jim. He is the missing ingredient. Having him to listen, touch, feel, hear, smell, know….having him be part of each day, each moment, each thought and knowing he would always be there was a comfort I have lost forever. There will be no more passionate kisses or discussions about a presidential race or a movie we saw. There will be no more passing back and forth of the paper. No more taste tests in the kitchen. No more arguments. No more sitting comfortably together in the sunshine on our front porch. No more worried discussions about the kids or bills or anything. There is now only a silence that creates a deafness that is so loud and protruding, it suffocates me emotionally to the point of exhaustion.

Recently, I have delved into some boxes of old photos. Places, times, memories came flooding back. Things I couldn’t remember are gone. Jim is not able to help me recall the spitball fight in Martinique with the couples from Italy. Or were they from Australia? Wait, there was a couple there from Colorado and the rest were from Europe, right? When did we drive to California and stay at the Kaleidoscope Inn? We went to the Hearst Castle and we ate at that really good steakhouse, what was the name of it? Was it Thanksgiving or Valentine’s Day we stayed up on Mt. Charleston and I was so upset we couldn’t get the basketball game because the satellite was frozen? 

Gone. If I can’t recall the details, I no longer have my guy to ask. Even if he remembered, I probably wouldn’t be able to understand him.

There is no denying I have been grieving him over a very long time. It is shameful to admit I wish I could just move on. Along with those words, comes the horrible reality of wanting to be done with watching him succumb to each phase Alzheimer’s brings on. To stop long enough and really think about wanting to be done with him, means he will be dead. And to think of him being dead takes all of my joy and life away. But to think about continuing the visits and not knowing before stepping foot in his facility what he is like this particular moment of this particular day….will he know me? Will he light up like he always does? Will I be able to make out something he says? Will he be awake? Will he be drooling?   Does it matter? He isn’t going to miraculously emerge as his old self, able to carry on the exchanges we held just a year ago. It is exhausting and mentally handicapping.

There have been conversations with friends that have naturally touched on the inevitable subject of me moving on. Taken out of context, it seems cold, deceitful, shallow…. pick your adjective. But, sometimes, as we all know, conversations evolve from one thing to another and things are said that upon looking back might be regretted or just simply a little shocking that the words came out. But at the time, the subject matter came with ease and without malice.

But there it is. I suppose if I were a typical Alzheimer’s wife, in later years, the topic might not be broached. But I am 46, with what I am told are plenty of good years ahead of me. Hard for me to see it. Hard for me to see past the next 5 minutes, let alone years from now. The thought of trying to start a new relationship not only overwhelms me, it makes me a little sick to my stomach. The thought of trying to explain to someone all that our family has endured, the introductions to friends, the awkward getting to know you stages….ughhh! That is why I married Jim and stayed married to Jim (among other reasons). I was done with the whole dating scene. And now there are apps for dating and websites and social media…good grief. And introducing them to the kids and meeting their kids and all of it just makes me want to crawl in a hole.

Truth be told, I often refer back to many articles and notions pertaining to being single and thriving. Why do I need a man? I am capable all on my own. I can be a single mom. I can go to a movie by myself, enjoy a meal solo and even travel wherever and whenever I want. Right? Where is it written I have to ever find someone? Somewhere along the way it is engrained in our very being: You should be with someone. You should want to be with someone. You have less value if you aren’t partnered.

I don’t have time. I am taking the kids to an activity literally 6 or 7 days a week. Almost every night is spent at a practice or a ball game. And I am fine with that. I love watching them and it gets me up and out of the house. I feel so lost and out of control at times and just keeping my life simple seems about all I can manage. Our house is small, but sometimes can seem so empty and vast. I would be lying if I said the thought had never entered my mind. Finding someone new. But just like the fleeting thought of wanting it to all be over, it is superficial and without merit. It isn’t a replacement for Jim I long for. A hand to hold. A laugh to share. A book to discuss. It is Jim and our collective life I seek to find again. The connection I long for cannot and will not be found in another….yet it is so easy to think in terms of wanting to have that all again. When I delve deeper, there isn’t another I picture…it is the memories with Jim I ache to recreate and hold steadfastly onto so I don’t forget them too.

Obviously, I am not “ready”.

I look in the mirror in our bathroom after getting out of the shower. My nakedness reflected back to me, with changes showing each year.

Jim saw me before the wrinkles. Before the cellulite. He saw two children born from this body. He saw me before the gray hair. He saw the youth and the beauty. He saw the immaturity and waited for the personal growth. There will never be someone who saw me and loved me in the same capacity. He has seen and heard me at my all time worst moments. When I was tired, hungry, frustrated, mad or acting like an ass for no apparent reason. He saw the real me. And he stayed. He never waivered. He loved me and continues to love me with every single fault and horrible thing he has witnessed from me for the past 20 years. We built traditions with our children. We fought through times of hurt and miscommunications. We struggled. He chose me. And continued to choose me year after year. We trusted each other. Trust. He still trusts me. In a world of throw away relationships, we have held together for better and for worse.

Our vows said to have and to hold in sickness and in health. For richer and for poorer. ‘Til death do us part.

There is no need to find anyone else to cover those things. I’ve covered them all with Jim. There is nothing left. Nothing left to give.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (16)

16 Responses to “There is No Replacement”

  1. Ann says:

    I wish had had words, but I don’t. You tell your story with a raw honesty that is both beautiful and heartbreaking, and I admire you so. I don’t know what the next chapter holds for you, but I do know what an incredibly strong and resilient person you are – and I know you are going to be okay. Unfortunately, that doesn’t help to heal your broken heart… I wish it did. Sending love and prayers.

  2. Kathy Taylor says:

    You put the feelings of so many of us into the words that you write. My rock and my love left forever in August last year and I, too, think of all that is lost forever. Bless you and all of us who are going and have been through watching the loves of our life slip away

  3. Kathy says:

    Magnificently written – although I dearly wish you weren’t in the position to have written the post. Your post should be printed out and read by every spouse in the country – it is a reminder to appreciate every day of ordinary married life. I am praying for you and Jim. This nightmare seems like it is forever but you are moving through it, it is not forever. Things will get better – and I’m in a position to attest to that.

  4. Olivia says:

    I know your pain as I too have been going through the same thing.
    I can say ditto, ditto, ditto. But, I want to stop at the last sentence….and hope you will reconsider it, even though you don’t feel it.
    Sweetheart, you have LOTS to give! Lots and lots and lots. In fact your giving it in your writing !

    Like it or not, you are “moving on” everyday. Each day is a new day you are learning new things. Things about yourself, your children, your family. Let the learning happen, we can’t fight it. The sun will rise and new day come we can’t stop it,

    Don’t worry about a anew love life, because when you do, you put yourself through possible scenarios that are t even in the picture…..try to stay in the present with an open heart,
    I never believed I could live and breath without my Bill! The man who loved me more than anyone in the entire world! I would never find another man and I never have, and I never will, not a man like my Bill!
    But of course that’s true, because everyone is unique! However, there will be love in your life in fact I believe if you look around you’ll see all the love around you right now. Right this very minute!

    You are exploring new territory right now and we have a choice as we explore new territory and the choices to see everything wrong with this or to see everything good about it. Now that may seem rather silly for me to say perhaps even cruel. The truth is if you stop slowly and experience only the good, whether it’s the loving touch of a caregiver, The smile of a child or grandchild, the heart of a friend, the beauty of the flowers outside her window or the fresh fallen snow, goodness is all around you in fact, you are surrounded by love and goodness every second of the day.
    Your life is not over nor is your life destined to be devoid of love. You have so much to give you haven’t even discovered it yet but you will… I promise you if you keep looking up you will discover what you have to give!
    I don’t even know you, and I can see you have a gift of writing. I suspect this will become a very wonderful gift that you give to so many people even more so than you already are.

    I sat with my children the other day, my adult children, Family meeting the six of them, as we transition putting my husband into a care facility. I suddenly realized just how blown away I was by what beautiful human beings these children that we share together that we raised together are. Suddenly, I had a new hope in my heart that I haven’t had in years since this diagnosis. Almost a lightness if you will.
    Someday, I hope this will be for you as well. It is so true what they say and that his dementia is not happy taking only one life it wants to take two or three or create a path of life it can take down with our beloved spouse.
    After all this time and all these years, at the age of 61, I have decided in a very determined way that I will not let it take my life as well. My children insisted that I not let it take my life any longer. In fact I have stepped up to take over so many of the responsibilities that I’ve burdened myself and shouldered on my own with over these past years.
    I realize that moving on is not about finding another man it’s about finding myself and discovering more about myself that I didn’t know before. And certainly I have been doing that without realizing it.

    I realize that I must move on as a tribute to my Bill and our marriage. This doesn’t mean I’m going to be seeing someone else or anything like that – I am going to keep my heart open to the world and express my qualities this doesn’t mean I’m going to be seeing someone else or anything like that – I am going to keep my heart open to the world and express my qualities, fully discover my gifts, and then give them away to the world and anyone who would like them and enjoy them.

    This makes me feel happy even as I watch the debilitating disease take over my husbands mind, just thought processes, his behavior turning them into somebody that I don’t know anymore someone who never was.

    Yet I will always know who he is and I will never forget that and I will never walk away. I guess you can say I have truly become a professional care partner – Not something I ever wanted to be. However – Not something I ever wanted to be. However, I know that my husband would be proud of me now if he could possibly understand and show it.
    What he gave me I can never lose any more than what you were Jim gave you can you ever lose. It stays forever and hold you up in whatever it is you do.
    In fact if you really thought of it, it is what he would want his legacy to be. He would not want you to crash and burn, be miserable and alone – no not a bit. He would want you to always be riding on the love he gave you and take your life to the next level! I hope you do darling I hope we all do all of us find ourselves in this predicament. Try to focus on all the goodness all around you darling. Love is reflected in love, life in life, discover the love but it’s right there waiting for you right now.

    • Maureen says:

      I love what Olivia said. It’s not about another man for me either. My husband just started daycare two days a week until he is approved for Medicaid. In the meantime it is self pay. This was a big step for me, but its time. I will reclaim my life little by little, as time goes by. Right now, I’m focusing on getting back to my business. I took care of my hubby for as long as I could, but the money begins to run out. It is all in God’s plan and hands. I am the best woman I can be. That is all I can be, and that is enough. Life will get better for me. Not so for my husband. But, I will be with and here for him. He is the love of my lifetime.

  5. Carolyn says:

    Oh how my heart and soul identifies with all you have written. How can you wrap your mind around the fact that your soulmate is gone, along with all that made up your life together, and yet he is still here?
    My heart aches for you, for me, and everyone that is faced with this. It can never be fully understood unless you are living this awful nightmare.
    Til death do us part. My declaration also.

  6. Cheryl says:

    Love you!!!!

  7. Joanie says:

    I pray for you! I pray for your family! The hurt is too terrible for earth to comprehend. But earth has no sorrow that heaven can’t heal! He is your strength. Trust that even in this horrible valley He has a plan. Keep looking up for each and every little step on this path! And when you can’t take another step, it’s ok, rest, rest in His arms.

  8. Martina says:

    Hugs for you…from me.

  9. JOAN says:

    Karen in your steadfast loyalty to Jim,you are honoring
    him and your marriage.It is the true meaning of for better or for worse and selflessness.May the Lord grant us patience and above all courage for the days ahead!
    courage for the days ahead.Peace!

  10. Elisa says:

    “It is shameful to admit I wish I could just move on.” No. No, it’s not. It’s natural. The limbo you’re in right now isn’t normal, it isn’t how loss is “supposed to be”. Wanting an end, that’s not cold, it’s kindness. This is why we have things like DNR orders, and living wills, and why we can do things like refuse treatment if we decide it’s best. It’s why we have care facilities, rather than run ourselves into the ground providing at-home care that will never benefit anybody in the end. And that “end” is where the living are left behind and have to still keep living. At some point, you have to come first. And you deserve to come first. And you are not short-changing him by wanting to move on. Please don’t feel ashamed. It’s human.

  11. Donna Cole says:

    The one thing that you have never mention is your faith?

  12. Lee Ann says:

    Its true that Alzheimer’s disease is sometimes called “the Long Goodbye.” Because it isn’t over in a couple of days, chemo and radiation, it goes on very gradually. You get the privilege of grieving in place, even while your loved one is still alive. I think its a little premature to have people talking about you dating in the future. Because you are still going through that long goodbye. and when Jim is passed on, you aren’t going to miraculously turn into the dating woman. You will still be you, you will still have the love for your family, your friends, and you may count men as friends too. Companionship can be wonderful.

    But spend your time and effort now in your kids, ensuring Jim has good care, you will never regret all this hard work and support of the three people you love. But love yourself too. Go for a massage, play golf, get out and do things to help you too. think of three stress relievers and do them. Get your hair done, buy a dress, invite a few women to go out to dinner with you. Start a routine with close friends. Take care of you too.

  13. Kathy says:

    Karen-I came to your blog late but have read all of your postings. Thank you so much for putting into words exactly how I feel. It is so difficult to watch my husband struggle with this awful disease while trying to maintain my job and supporting 2 kids (older than yours). Like you I always viewed myself as a problem solving get it done kind of gal. Trying to solve ever shifting problems where any fix is temporary and the real problem can never be solved, is incredibly difficult. Not as bad though as watching your partner in all things drift away. Your blog has helped remind me that although I may be alone in my corner of the world, I am not alone in the larger universe of Alzheimers spouses. Thank you.

  14. Aigner Wiggins says:

    I admire your strength! You’re are an amazing woman.

  15. Diana says:

    Karen-I have been looking for something on the internet that I could relate to. My husband doesn’t have alzheimers, but lewy body dementia. But like your jim, he is not elderly. He’s not 59, having had symptoms for probably a decade, diagnosed for about four years. So much of the information that I find is directed to carers for much older dementia sufferers. This is not to make light of their suffering. It may even be worse. I am a young 55, at least I have my health, my work, and a few good friends. But the way you describe memories. I wept. One of the things that hurts the most in this situation is to have lost the person I shared those memories with. We have had a wonderful life, so much fun raising the kids, vacationing, little private jokes-no one to share them with now. It hurts more than the day to day slog of caregiving. Not to be able to have an intelligent conversation about politics, or to plan a garden, or to go kayaking under the autumn foliage. And sex! Well this is a family blog, but I miss that closeness. I thank you for sharing and helping me to feel less alone.

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