Never Over

A year ago today was the last time I heard my husband say my name coherently. It was a year ago I sat with him and wondered how much longer I could go on. I thought about him struggling to speak, shuffling as he walked, wearing a catheter and briefs, starting to have trouble feeding himself and selfishly I was worried about finances and impacts on me and the kids and wondered how long it would be before Alzheimer’s Disease eventually took him. I figured I still had lots of time.

I found out the heartbreaking answer just a few days later when I got the call he was “actively passing”.

I have learned so much in the past year. I have learned about friendships. I have learned about empathy and kindness and I have also learned about selflessness and selfishness. I have learned about the kind of loss you think you understand until you actually live it. I have felt an emptiness inside of me that I didn’t know could exist or was possible. I felt a perpetual sadness that there is nothing in this world to compare to or which can lighten. The only relief is sleep, but then you wake up. Guilt is so ingrained in me I can’t remember a time it wasn’t part of my being. I have felt helpless as I watched my kids mourn their father. I have buried my husband and yet I still cry for him, long for him, ache for him and miss him. Terribly. I thought I had cried as much as possible before he died. I was wrong. My eyes now have dark eyelids and seem to be constantly swollen.

Yes, a year ago I was struggling to be a caregiver and a mother and somehow keep myself sane. Now I am struggling to recall all of the memories I am terrified of losing and a few I should probably forget. And now I face the challenge of a future alone, without Jim and starting all over. It is like being fresh out of college and trying to decide a path that will best lead me forward to whatever my future holds. My passion is Alzheimer’s Advocacy and education. That is what I do best and I what I want to do. It just doesn’t pay all the bills.

I look at photos and watch videos. I see our love and our excitement together. I see our hopefulness in a future laid out before us. I see Jim as the disease progresses and it all triggers the same feelings that crept in each time he showed how much he was changing. So I stop looking and I stop watching. Then I start to feel a void. A new guilt. Trying to move on. Trying to stop the pain and misery. And I go back to the darkness. There are good moments. The kids and some friends have made sure of this. But there is always that nagging feeling that something just isn’t as it is supposed to be. Something always seems to be missing….

And yet, we were lucky. Most Alzheimer’s patients aren’t able to communicate so late in the game. They usually can’t remember the loved ones who visit or care for them. A year ago Jim said my name. He knew his name. He still wanted to watch the kids play ball (another regret which equals guilt: not taking him because I was worried about the cold….if I had only known) and he could still hug me and tell me he loved me. He loved me. To have had someone intimately know you and still love you with the intensity and the depth that man did me is something you just don’t get over. It is rare, it is special and I cannot express my sorrow for no longer having that kind of support and unwavering adoration. It only comes along once in a lifetime and there have been moments I wonder what I have to look forward to. It seems it will all be a wash from here on out. Yes, we were so lucky in so many ways. The support from our community. The friends who rallied round. The strength we gave each other. But here I am a year later and I am just as lost as I was on that fateful day I got that dreaded call.

I have the kids to watch grow and to parent and to comfort along the way. But what am I supposed to say as they watch their friends interact with their Dads and my children don’t have one? They had a great one and he wanted nothing more than to live long enough to be there for their childhoods and young adult lives. That was the one thing that would make him tear up and cry. Losing his children. Them losing him. Jim was such an amazing man and even better father, it is such a loss for them on so many, many levels. I can only fill in so much. He was so handy and smart and funny and witty and dropped everything to do something with them. They are sadly missing out.

I couldn’t save him. I couldn’t keep him from falling victim to this terrible death. I know it wasn’t my fault, but as anyone who has cared for and loved someone who has lost a battle to a disease they fought against with all their being, there is guilt which never strays far away. And there is guilt for not knowing what was just around the corner. And guilt for losing patience. And guilt for not fulfilling bucket lists and guilt for worrying about the wrong things and not having the right conversation at the right time and not being ready and not knowing that the very conversation you are recording and taking for granted would be the last. For falling asleep when you should have been awake, even if it was 4 am. For letting go but wanting deep down inside to hold on forever. Being in a hurry to get home to fix dinner, or do the laundry or relax….there is plenty of time later. But then you don’t really feel like it and there are few dinners that are made and even fewer that taste good. There is no more relaxing and now you only do laundry for three. And you only cook for three. You only travel as three and only need three tickets for a show. And you now have all the “guy” chores to do and the last thing you ever feel like doing is getting out of bed and doing any of it. When you finally decide you want to do something, either the kids have plans with friends or your friends have plans with their husbands. I haven’t braved a movie solo or dinner alone. It will happen, I just haven’t yet. I will. I know I will. I have to. One day soon. It is my life. My new normal. I can go hiking by myself and travel unescorted and do whatever I want to do, just sans a partner. It takes some getting used to and I haven’t quite wrapped my head around it yet. But I will.

Mourning is a process. A long, slow process. No matter how much you want to get over it, how much time you had to prepare, how ready you thought you would be….the heart and mind aren’t always simpatico and they both run at their own leisure.

A year ago I could go visit Jim. And bring his laundry home to wash. And the kids could come with me and see him, talk to him, tell him about their day and what they were doing. They could play catch with him or sit outside in the rocking chairs. We could see his smile and know he was still with us. Even if it wasn’t the life he wanted. Even if is wasn’t quite the same Jim. And then I know I am so very selfish for wishing another day with him. I really don’t want that because he didn’t. I want the old Jim. Before the disease. The one I fell in love with. But the sick Jim, the one who left me once and for all, he taught me more than anyone ever has. He taught me grace and acceptance and tenacity and patience and the real meaning of love. He showed me each and every day. I am forever a changed woman and forever grateful.

So now I am alone with the kids and no longer have the worry of his care. Or what is coming around the bend. Or what his wishes might be. Or when will it all be over. It is never over. Alzheimer’s takes them, but leaves us with the loss and pain that sticks around for a long, long time.

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 “Never Over”

  1. Chris R says:

    Karen-
    I have thought of you often over that past month. I lost my mother in December 2016. She was 89 and lived a long and fulfilling life. Six days later, I placed my 66 year old husand in hospice care. It seemed that early onset Alzheimers and frontal temporal dementia would be taking him soon.
    They talk about the long goodbye, but looking back, it wasn’t long at all. He passed away on February 7th this year. He took a turn for the worse suddenly one Sunday afternoon and was gone by Tuesday. And while I wanted more time to say goodbye, I am comforted in knowing that he never wanted the life he had led for the previous 5 years. Yes, only 5 years ago he was diagnosed-almost to the day.
    This is our son’s senior year in high school. He won’t be there to see his youngest son graduate from high school. It breaks my heart. I believe the only reason our son is handling this as well as he is would be because his Dad has lived somewhere else for the past two years. He still misses him and grieves him, but the pain seems to be less.
    Me? I’m trying to find our “new normal.” Still in search of it. And like I did with the disease, I’m trying to plan the future without looking too far ahead and attempting to live in the moment.
    I have realized that I have the most amazing group of friends and family that a girl could possibly hope for. They have all been there to help us through, but realizing that it’s our journey through grief.
    May we both find peace soon.

  2. Connie Howard says:

    Losing your soul mate will take a long time to recover from. Remembering the man he was before Alzheimer’s makes me miss him more. Remembering the man with Alzheimer’s makes me realize what a horrible disease it is and thankful my Christian faith gives me the hope of seeing him again in heaven free of Alzheimer’s. Hugs and love to all those sharing this journey.

  3. Butch says:

    My wife is 63 and has been suffering for 6 years. She can never remember anyone names. There are no more conversations. Just me talking.
    Saddest disease! Oh the guilt eats me up!

  4. Linda says:

    Karen, my heart goes out to you. You said it so very well! I lost my husband eight months ago today. All things you said I am going through also except young children. We never had children together but there are his children and grandchildren. I fin all ate my first time out alone just the last couple of weeks. I have a note book and I write down my “firsts” without him. The longing to be held and loved hurts so very bad. He knew who I was but I don’t think he remembered my name. He didn’t know his kids of grandchildren. He was in a nursing home for only three months when he died.
    I will forever remember this letter you wrote and will keep you in my prayers . Remember he would want you to be as happy as you can without him. Sending love.

  5. Hope says:

    In 1996 I lost my husband to pancreatic cancer, our youngest daughter was getting ready to graduate from high school, our oldest from college. I felt all the things you are going through. Then I became caregiver to my parents, my dad passed from Alzheimer’s in 2010 and 6 months later my mom passed. My faith never waivered during my trial and tribulations, I remarried have grandchildren and I look back on my life and truly believe that God will bring you love when you are ready, it won’t be the same but it will be in his time. God Bless you and your children.

  6. Jeannie says:

    You said it so well. My husband is in care, has been for over a year. PD and PD dementia with Lewey Body. But he still knows me, his kids and grandkids. I see the love in his eyes, it means so much. Some days are hard, and emotional. Other days I am thinking of all that I need to do at home. And days I don’t make it in to visit fill me with guilt. It is hard, but at least I still have him for now. Not the same, but the same love. Thank you for sharing.

  7. TIna says:

    I cared for my father for 8 years. I feel so guilty about every little time that I think I could have given more, done something better, been more present, etc. Thank you for being so candid about your feelings which resonate greatly. I think when you love someone that it never feels like its enough…that you can always do more. Logically, we can’t and we only do the best that we can. But feelings and logic don’t always mesh. Peace to you and yours.

    • Kathy says:

      Tina, I too took care of my Dad, for 9 years. He ended up passing from a stroke in his sleep. I was fortunate in that he could still eat, drink, walk with a walker, and knew who I was, but there is guilt, did I do enough, why didn’t I just let some things go, why was I not as present or engaged as I should have been. Seems since he died a month ago, I can only think of the things I did wrong, and not the many things I did right. I still have two kids at home ages 13 and 17, plus older kids and grandkids, so sometimes it was a juggling act. I am wondering, how do all of you deal with feeling guilty?

  8. I lost my husband October I have been reading your story as it unfolded in later years, sharing many but not all of your experience My husband lost the ability to speak and the pain of losing him at least twice did not prepare me for this process of grief I so understand your guilt and yet know it is a guilt of love not of things done wrong I share your experience yet I know it is so alone and personal it is not really same For us There are no children to care for – look at and see him yet I do not believe that makes it easier I wish I had words to express how my feelings are and I know there are no words to share your feelings! So thank you for being strong

  9. Gregory says:

    Karen, your post hits the nail on the head for so many and truly shines a light on what the spouses of those with Alzheimer’s go through. Bless you for your work and your continued support of those with dementia.

  10. leigh schneider says:

    For those people who’s relative are Alzheimer’s Disease sufferer and maybe reading this, I find it hard that people are still ignorant of herbal medicine when it comes to treating Alzheimer’s Disease.
    I have been through many phases over the last couple of years since my father’s diagnosis, he was 53 years old and had Early Onset Alzheimer’s Disease and his diagnosis changed my life in many ways, I spend most of the time in denial and I keep thinking the tests were wrong. But deep down I knew they were correct. Though sharing his story is very difficult. He was always very successful in being able to accomplish anything he set his mind on doing. Alzheimer’s is a bitch of a disease. It began by robbing his recent memory, but it didn’t stop there. It continues to steal, taking the most recent memories until it has pilfered all but the oldest memories, he experienced a decline in his ability to think, remember and make decisions. I feel a need to express my thoughts and feelings about how it affected his day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
    I remind myself how lucky to come across Charanjit rychtova’s herbal medicine which is able to control this disease without any side effect, I felt a moment of relief hoping that he is free from this ailment, and nothing compares to the healing power of nature. Now I believe almost every health problem can be addressed in one natural way or another. The only thing I wanted was for him to feel better. I’m proud to say my Dad is Alzheimer’s free. You can also contact him for more info. charantova@gmail.com

  11. Alessandro Machi says:

    Leigh Schneider, Please quit posting the exact same message all over the internet. The name of the person you mention does not exist. Get a life.

  12. Ashley Ryan says:

    Karen,
    I had recorded “Alzehimer’s: The Caregiver’s Perspective” and found the alone-time tonight that I needed to watch it. My grandmother, who raised me, is fighting. Please know my heart is with you and your beautiful children. I’m grateful you’re sharing your story and helping to bring the reality of this debilitating disease to light.

  13. Lori says:

    My husband has early onset dementia and I’m going through a lot. It’s helped me to read your story. I try to live in the moment and love him as much as possible, but it’s getting more difficult. Diagnosed at age 59 but exhibiting symptoms since age 54 or possibly earlier – he’s still at home and I’m doing everything. No kids of my own and his daughter is 29, pregnant with her first, and out of the house for 10 years now. I keep wondering what the future will hold and hope you find solace.

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