My wife passed away from MND on May 6th 2024. One week exactly before her 57th birthday. She was diagnosed in 2020. I spent the past 4 years caring for her and grieving with her. We had been together 36 years. During the time I cared for her I had to be her support as her body gradually wasted away but her mind remained as vibrant as ever. That was the hardest part. Knowing she was fully aware of the inevitable state she would end up in. It was so excruciatingly painful to watch the person I loved most in the world gradually fading away before my eyes and being powerless to prevent it. All I could do was be there and provide physical and emotional support until the end. In one way I'm grateful we had the 4 years from diagnosis. However during that time we really didn't know how long it would take. Now I am struggling to cope without her. And most vivid memories are of the worst moments. Although people say I'll feel better over time, currently I am just going through the motions day to day trying to make sense of my new reality. I just wonder if anyone has had experience of losing their spouse to MND?
Hello SteveH, you have been through such a long period of hard work (even when it's a labor of love). You've also carried on your shoulders the weight of anticipatory grief for a long time - that takes such a toll no matter how 'strong' we try to be. I can't offer any specific feedback regarding the MND (other than my awareness of MND having a slow, grievous march towards complete immobility). Like many of the folks here at GIC, I know what it is like to watch our strong, beloved Hero and Super-friend become weak and fade away, whether they have good cognizance/presence or not. Grief is a long journey. Take the external world one day at a time, and your internal world one hour at a time. I don't know if we ever really feel better, we just get familiar with the new normal. Be kind to yourself. You're in my prayers for peace and comfort only God can provide. ~ Michael
Hi Steve, it’s been quite awhile since I’ve been in to the group, this site with so many careing, understanding wonderful folks have helped me to get where I am today. I was very Blessed to find GIC. My dear husband name is Jack, my name is Patti. Hope you will share you’re beloved wife name with us. My Jack was dx’d with PD at age 57, prior to his diagnosis I researched deeply into all the many Neurological Diseases and recall MND, Bless you Steve in all you did for you’re Mrs, I know so well how devastating it was, the progression of neuro diseases. Into the 15 th year with PD Jack fell and suffered a TBI, I totally cared for him at home his last nine years till Jesus took him from my arms to be with God. I believe afterwards I went through PTSD, I kept reliving those many years of his illness, and blamed myself for him falling, but he refused to use his walker. I was so thankful when the day came that I could remember our many wonderful, happy years of being married 61 years. Thanks to the many many folks here in Loss Of Spouse group. Steve, please keep coming back to the group here. You will find others that understand, only us that going through this journey are able to understand. Prayers for God to give your heart peace, strength, Blessings, Patti
Hi Patti Thanks for sharing your story. It must have been so hard for you to take care of your husband for that long time. Being there and being strong for the one you love can be all consuming. I was told I had PTSD following the passing of my wife Nicole. So I understand when you said you also suffered from that. It seems it is the price we pay for providing the unyeilding love and care to our loved one. However if I new I would end up with PTSD symptoms after my wife passed, that still would not have changed my devotion to her. I take comfort in the hope that a time will come when I will look back and remember just the good times before her illness, as you can now remember your wonderful years with Jack. Thanks Patti for your support. Steve
Hi Steve, I'm 9 years out from losing mine after a really crazy 30 month or really longer fight with diabetes and heart issues. I wont give you the details, But i just want to say, it wont get better, but i PROMISE PROMISE PROMISE you that it does get softer. Please be mindful of that. Don
Hi Steve , thank you for replying ,and for sharing you’re beloved Nicole’s name.I find speaking my Jack's name with others helps me. and I mention him in my conversations often with others, he’s not here physically but I feel his spirit with me through each and every day. Just recently at dinner with family, my great grand son Steven,five years ol age sat next to me, after dinner he asked,Grannie where is you’re husband, I thanked him for asking and replied Jesus took Grandpa to Heaven to be with God. On birthday gifts, etc to our family I always sign them with Love , from Grannie and (Grandpa (in Heaven). I want others to keep him in their memories too. Steve, please take care of yourself for Nicole like my Jack wants me to do for him. You’re happy good memories will one day come to be, please BELIEVE. I noticed you are out of USA, do you have local support meeting groupsWhere you reside? I went to one ( before I moved East to be near our daughter) became friends with several ladies, we keep in close contact by phone. Lifting you and all others in prayer. Blessings, Patti . Blessings, Patti
Hi Don Thank you for your comments. I'm glad you have found form of peace after your time of upheaval and heartache. I do take comfort in hoping that someday I too will feel that softness. Thank you Steve
I have been spending the last 9 years trying to create a new life, while honoring my old. Part of that is passing on things I have learned. She was a dialysis patient for her last 30 months, part of the struggle. When she was sick, I did 3 walks for kidney research because I felt like I had to do something besides being a caregiver. Since then I have done 15 more and will do walk #19 in November. I kept doing them because I wanted what happened to her to mean something, to do some good from something so tragic. I also wanted to honor her struggle and I felt like the best thing I could do is to bring awareness about kidney disease and to try to raise money. That became part of my purpose in life.
Thanks for sharing that Don. It is a noble thing you are doing. I currently am still struggling to find a direction and purpose. Still in turmoil with emotions. All part of the process I guess but still quite debilitating. I'm grateful for this forum as it allows expression of my feelings and to feel.not quote so alone. Even though I have support. It's not from people who have experienced loss of a spouse. I don't find the same connection and understanding from them somehow. Have you experienced that or is it just me somehow being selfish without meaning to be?
