A Different Kind Of Grief



I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.

Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable. Children are supposed to outlive their parents. It’s the natural way of things. My father used to say, “Nobody gets out of here alive,” and while that comment always brought a chuckle, it was a grim reminder of the truth. Death is just as much a part of life as birth, but for some reason, we’re always shocked when it happens to someone we love. Even when that someone has been diagnosed with a terminal illness like cancer or dementia.

The recent loss of my husband to Lewy Body Dementia brought home the complex issues surrounding the grieving process in a very personal way. My sister fought breast cancer with every ounce of her being, never losing her spirit or her character. To the very end, she was the person she’d always been. Her wit, grit, and personality were intact to the last moment of her life. My knowing she was dying did not change the fact she was jerked away in an instant when her heart thumped its last beat. I felt the loss and grief immediately. It tore at me and smothered me for months and even years.

The loss never hurt less, it just hurt less often.

I assumed I would feel the same way when my husband died, but I was mistaken. After the initial sorrow that washed through me as I felt his heart quiver its last beat beneath my hand, I felt oddly numb. Fifteen minutes of intense sobbing slowed and a surreal sense of relief settled in. Relief? How could I feel relief when the man with whom I’d spent the last 4 decades had died? This was the man who’d shared my life as we raised our children and built our home. He was my best friend, confidant, and companion for almost 40 years. There was no one I loved or respected more than him. He was half of me, so why wasn’t I devastated?

I stood in line at the funeral home while mourners walked past, hugging me and crying, but while I did shed some tears, the utter desolation I expected to feel wasn’t there. I was told how strong I was, but what they didn’t know was that I was numb. Like someone who’d survived a horrific battle, I was detached and flat. There was no sorrow, no joy, no emotions of any kind and this worried me.

What was wrong with me?

After a few weeks, the initial numbness wore off, but even when the tears began to flow, it was still not the same devastation I’d felt with the loss of my sister. For a woman who typically cried during Hallmark commercials, this lack of emotion concerned me. I began to analyze my lack of feelings because being raised by two guidance counselors had instilled in me the need to understand why people do what they do. As a result of my armchair psychoanalysis, I came to a few conclusions.

First, dementia is often referred to as “the longest goodbye” for good reason.

Over the course of years, our loved ones change dramatically. Their personality changes, their abilities change, and little by little they morph into someone else. They still physically resemble the person we knew and loved, but many other changes are extreme. The relationships we had with them also change. Our husband or parent, becomes our child. We must oversee their needs not too unlike the caregiving required to take care of a toddler. That doesn’t mean we don’t still love them, but the type of love evolves as the disease continues.

Most caregivers begin experiencing ambiguous loss during this time (more on that can be found here.) For those caring for a dementia patient, the mourning process will begin years before their actual death.  In the six years before my husband’s death, I spent many nights crying myself to sleep with my mornings spent concealing the circles under my eyes so my husband wouldn’t notice them. I could see him disappearing in tiny slices and there was nothing I could do to stop it. The reality of that was soul crushing.

Second, caregiving is hard.

It’s the most difficult thing I have ever done, and I imagine most other caregivers would agree. Before being thrown into a caregiving situation, I’d always assumed the difficult part would be the physical side of taking care of another person. Lifting, bathing, dressing, and feeding another adult would be demanding, but I soon learned the physical component was far from the most difficult aspect. The hardest parts, for me, were the isolation and longing. Once our loved ones can no longer be left alone, our freedom disappears. No more lunch out with friends, no more shopping trips, no more long soaks in the tub, no more anything. And this confinement is twenty-four hours a day, seven days a week…for years.

Eventually, life settles into a monotony of chores and a tight schedule that cannot vary from day to day due to the complexities of dementia. Our loved ones can’t tolerate change so keeping a consistent schedule is imperative. We begin to judge how good a day is by whether our loved one stayed calm, or if we were able to take a shower without interruption. It’s like being in prison when you haven’t committed any crimes. And even after hiring aides or placing our loved one in a facility, our lives do not return to normal. We still have to oversee their care, and keep their interest in the forefront with every decision we make. In my case, my husband spent his last two years in the assisted living component of our retirement community. It was a great arrangement (more info on that came be found here) but I still spent most of the day with him. I was the center of his world. With me he was happy. Without me he was frightened, anxious, and sad, and he watched the door continually until I returned. Consequently, I didn’t leave him often. I don’t regret that, but at times I felt trapped.

Not only did I feel isolated by the disease, I also longed for the life we no longer had. We were blessed to have had a wonderful marriage. We truly enjoyed spending time with each other, but the disease eventually stopped us from enjoying even the simplest activities. We could no longer go out to eat, or see a movie. Travel was out of the question as were conversations. He could listen and understand what was being said, but he couldn’t participate with more than a sentence or two. There were no more walks on the beach or inside jokes or cuddling up to watch a movie.  I missed that. I missed sharing the things “normal” couples shared.

The third reason I blamed for my lack of devastation at his passing involved the ravages of the disease itself.

My husband had been a brilliant and highly active person before Lewy Body Dementia took over his brain. Within a few years, confusion replaced the brilliance and shuffling legs stifled his activity. He went from running 5k races to needing a wheel chair within a two year period. By the end, he could no longer lift a fork or even sip a drink of water. His passing was not peaceful and watching him die was heartbreaking. Once his body decided it’d had enough, it took six weeks for him to finally surrender to the disease. Six long weeks of watching him shut down with us expecting his passing at any moment for the last 10 days of that time period. My children and I sat by his side non-stop for 10 days, only leaving to take a quick shower and grab some food. By the time he passed, I was beyond exhausted. I felt as though I’d survived a battle and in many ways I had. Trauma, shock, and exhaustion took their toll on me. Is it any wonder I had nothing left to give?

Now as I look back at his passing and my odd reaction, it makes more sense to me. At the time, the relief I felt that the battle was finally over was stronger than the sorrow I felt for losing him. While the sadness is now coming to the surface, the intensity still isn’t as strong as when I lost my sister. I think I’ve narrowed it down to two basic reasons. For one, there was no relief when she died, only loss. Her illness didn’t alter my personal life or activities nor did it change my future. Her death did not free me from anything. All it did was take her from me.

But the second reason probably explains the difference more than the first.  I began grieving at the time my husband was diagnosed. I actively mourned his passing for almost six years before he actually died. I went through the stages of grief, over and over during the course of his illness, having moments when the grief was so strong I could barely breathe.

Grief has no rules or timelines.  For those losing a loved one to dementia, the grieving doesn’t start with their death, it begins with the diagnosis and continues for years.

As one of the caregivers in my support group said, “You can’t begin to heal until they are no longer suffering.”

I’ve decided to forgive myself for not grieving the way people are “supposed” to when losing their spouse. I will forgive myself for looking forward to a life free from caregiving duties. I’m going to travel and hike and do some stargazing. I’m going to return to my writing career and learn to play the violin. I know there will be more tears, but I’m no longer going to question when or how they fall. I’m going to allow my grief to follow its own course and quit second guessing the path it takes.

His suffering is over. I’m allowed to heal now.


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33 responses »

  1. Lisa this was truly beautiful, and very brave of you to share. I pray I have half the grace you had and have for I feel I am totally broken.


    • Give yourself time, Mary. Let yourself heal on your own schedule. Grief doesn’t follow any rules and neither does healing. Search for happiness and allow yourself to embrace things that used to give you joy. It takes time. Blessings to you.


  2. Beautifully written and expressed, Lisa. We lost Buzz’s mom after four years of Alzheimer’s when she needed 24 hour attention. The emotional loss is ongoing throughout the illness and care giving. I hope you’re well on the way through your journey of healing. Hugs, Becky

    Liked by 1 person

  3. Thank you for spelling it out so plainly. The roller coaster is in full swing here. Some days I think we should have hospice now, then a come back says we may be grieving for years. Thank you again…

    Liked by 1 person

  4. Amen.

    I totally relate and had a similar experience when my John died a year ago from LBD…except his passing was much faster. It felt sudden even though he was in hospice care. He choked. I was not there when it happened. But I was numb, dazed at first. I threw myself on his bed and sobbed like you when I went home and found his bed empty. But a feeling of intense relief—almost euphoria—took over when I realized John no longer suffered and Lewy had lost its evil grip on me as well.

    Last Christmas season I was numb. This year I am not. I miss John very much and long for the life we had before LBD. But I am moving forward as he would want me to do. My tribute to him is my work as a volunteer and advocate for other LBD caregivers.

    Pat Snyder

    Liked by 1 person

    • Pat, I remember when John passed and your describing the numbness you felt. I guess it’s more common than we realize at the time. Thank you for continuing to be an advocate for caregivers. They need all the help they can get.


  5. You have expressed “this kind of grief” perfectly!! My husband was freed from Lewy’s grip 4 years ago last April. The grieving began when we received the diagnosis and I googled LBD, having never heard of it!! As it progressed and finally a care facility was needed, I REALLY grieved. When the end came….I felt we BOTH were free!! He was with his Savior and I finally felt peace!

    I think about him every day with loving memories. My faith, family, and friends were/are my lifeline.
    I am once again traveling, volunteering, and going on with life.

    Blessings to you Lisa!
    Carolyn Harmes

    Liked by 1 person

    • Carolyn, I’m glad to hear you’re going on with life. I’m determined to enjoy life after Lewy as well. I’m still grieving and partially numb, but I’m moving forward one step at a time. Thank you for commenting.


  6. Between this post and The Journey you have put down in writing exactly the way I have been feeling. It is a long hard journey. And it goes up and down with seemingly no end.

    Liked by 1 person

    • Silvana, I also reached a point where I felt there was no end in sight. I finally decided to attempt to live as though he was going to outlive me. I know that sounds odd, but it forced me to do some things instead of sitting around and waiting for the end. He was in assisted care by that time and I returned to Church and started taking a few hours while he slept in the afternoon to do some things I wanted to do. It wasn’t much, but it was a start.


  7. Thank you for sharing your experience in this devastating time. There is nothing worse than living and caring for the living that are dying. Hilda


    • Thank you for commenting, Hilda. I started this blog because I wanted caregivers to know they aren’t alone and the feelings of sadness, exhaustion, and wanting this to end are felt by most caregivers. We deal with a lot of guilt over these issues and we really don’t have the time or energy for guilt. Blessings to you.


  8. Once again, you have nailed it for all of us. This article was word for word perfect, hitting all cylinders, in what we living with dementia feel as life evolves around us everyday. Peace be with you.


  9. Dear Lisa, I,so,enjoy your writings…it helps me to realize that there is someone else who understands. I have several friends who have lost their husbands but they did not die of dementia. They did not go through the same experience as I. So I really don’t know anyone who understands how I felt when he died. He was not the same person! It has been 3 years now…I am a work in progress…much better but still grieving. Thank you so much for your writing.


    • I’m glad this post helped you in some way. I’ve seen many caregivers in my support group say they also felt some relief when the end came. It sounds cold to those who haven’t traveled the journey. For those who have, it makes perfect sense.


  10. Thank you so much for sharing. As a friend of someone suffering from LBD, it helps to understand this horrible disease and how it affects the caregiver. This will help her (the young caregiver with children still at home) to know the way she feels is “OK” and to “try to” not feel guilty. It will help her friends/family (ie support team) to try and understand more of what she is going through. Your sharing is invaluable. May God bless you and your family and may your husband be in a wonderful place with other friends and loved ones who went before him, until you meet again.


    • Thank you, Chelli. My heart hurts for your friend. This is a tough journey and it does help when others surrounding the caregiver have some idea of what they’re dealing with. You are a good friend. Blessings to you as well.


  11. Hi Lisa,
    Your post have been invaluable to me as a way to justify my feelings and share with ours. I am the one Chelli above is talking about and my husband is only 55 and we have 13 and 11 year kids. I feel your pain and send good thoughts your way. Thank you for expressing this journey so well.


    • Jennifer, I can’t imagine fighting this disease when you have young children at home. I hope you’re getting help and I’m glad these posts help you in some way. Blessings to you.


  12. I feel a real connection to you, Lisa, as I also lost a beloved sister to cancer 3 years befor my wonderful husband closed his eyes in peace after a long battle with LBD. My best guess is that the symptoms began ten years before he died. I was able to keep him at home until the last four months and I’m so glad I could.. I wish he could have died at home and if I had known how short the time would have been, I would have hired home care aides. When the end came, it was so fast. That was in February of 2014. I still grieve for my sister and my husband, and in essence, for myself. I am going to try to find an interest or activity or volunteer work so I can get outside myself. As a former science teacher, do you plan to watch the eclipse this month? My surviving sister is a retired science teacher and she and her husband are coming to my house for the event. Peace.


  13. Lisa, I really appreciate your articles; your writing has helped me down this LBD road. Bob passed 3 1/2 months ago. My grief is nothing like I had expected it to be. You have touched on some of those areas of grief that I did not understand.

    Earlier today I read about travel vehicles. Travel sounds good to me; I would like to do more of that. I sold our 32 foot sailboat recently as I could not sail it by myself and it was too much work. I’m 72.

    I will watch for more of your writings.


    • I glad the article helped in some way. I’ve been traveling all summer (my husband died in November) and it’s really helped me recover. I’ve met wonderful people and made a lot of new memories. This journey is tough, but we’re tougher. I’m convinced of that. Hugs and blessings


  14. Thank you Lisa for your wonderful elegant written article. My loving wife of 51 years passed on July 3rd from the dreaded LBD disease. I was her caregiver for 2 1/2 years until last December when we recognized she needed professional 24/7 care. My wife spent her final 7 months in a assisted living facility and when she passed my daughter and 3 grandchildren were at her side. My daughter was rubbing her back when she took her last breath. I felt so guilty I wasn’t there when she passed but felt some relief that my daughter was. I was at the ALF everyday for 7 months and it just happened that day I wasn’t there at 11am when she passed.
    I am still in the grieving period and will be for a quite a while but hospice is helping a little with that. I didn’t realize I was grieving everyday until I read your article and it all makes sense. I did cry many a night I left the ALF realizing she was slowly dying and I could do nothing to help her except to be there with her every day. We had many lucent moments in her LBD journey which I will cherish forever. So thank you for sharing your story. It will help me to move on down the road and I am so sorry for the loss of your sister and husband.



    • Charlie, it’s not at all unusual for our loved ones to wait until the one they’re closest to is not by their side. I’ve heard many, many stories similar to yours, including my own mother. She was by my father’s side for 25 years as he fought Parkinson’s disease. The one night she left the Hospice house to get some sleep, he passed away. I was with him as was my daughter, but it was as though he didn’t want Mom to watch him take his last breath. Please don’t feel guilty for not being there at that last moment. There’s a really good chance she didn’t want you to see that and was waiting for you to leave so she could let go. The last moment isn’t the important one, it’s those thousands of moments throughout the years that count. Blessings to you.


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