This forum has been so very helpful to me and I want to thank everyone who has responded to my assorted queries. My husband passed away May 19. He had a stroke a week before, stopped eating and drinking, then hospice was called and confirmed he was in his final stages. Up until that last stroke (his 4th), he had “pleasant dementia” — he always smiled, greeted visitors cheerfully, and knew I was his wife.
His time in memory care was just 50 weeks. Prior to that, I took care of him at home, working full-time but often remotely, and engaged home caregivers on days I went to the office. Like many of us, I wondered if our financial resources would dry up before his death and I am thankful they did not.
Still, I feel caught between relief and grief, guilt about all the mixed feelings, and for the most part feel more numb and exhausted than anything else. When he first went into memory care, I felt his absence more strongly than I seem to feel it now, though I do feel a sense of finality.
Those of you who remain in this forum after the death of your loved one, I wonder what your experiences are with grief after his/her passing?
Many thanks to all for your kindness. So grateful for the collective wisdom here!
For me, it was the illness and death of my final family member, my beloved brother, that brought me to Forum. He was 85 and had probable early Lewy's dementia. He died of sepsis before the Lewy's could rob him of himself. He was hoping for that and grateful for it, and begged for hospice rather than treatment.
When my brother passed my initial feeling was one of relief. I had "prayed" as an atheist prays for his release the two last weeks of his Hospice care. I knew he was free of his torment and his fear and I myself free of bearing helpless witness to it. I knew by going he had avoided a crucible of pain and agony for us both. I knew it was what he wanted. I knew the richness of the many years we had together left me with nothing unresolved (I think unresolved things are those things that cause the worst hurt after loss, as they can no longer be resolved, even if unlikely they ever would have been had both lived forever).
For me it was as you said this feeling of the "finality". A sort of emptiness. A shock. Once I reached the surface from the dive into loss I knew I was still in "danger" in that I was still floundering in the waves, now alone.
It was for me about just under a year to adjust. I had know when he was still alive that the end was coming. I knew it would be "best". I don't guess I spent a long time thinking about how I would never see those eyes reassuringly looking into mine again. Never share one of our bizarre laughs over the ironies of life. He had been what I always call Hansel to my Gretel in every dark wood of life. The one to say to me "While I have a penny YOU have a penny; while I have strength you will never be alone". For me there was never anything in life so certain as his loving support.
What helped me?
A diary of letter I wrote him. We had always written long long letters to one another when living in other parts of the state. I continued to write him. About what I felt, what I was going through, about memories I had, about a few things that I felt awful about, about his friends, about what I saw on my walk. I collaged it and it was such a ZEN, such a gift of peace to work on it with my hands and heart, freeing my mind.
The letters just stopped. A bit under a year. He is still of course with me. In the way my parents are even tho I am 81. They don't leave us, but as I teased him when my letters to him became few "I write you but you don't write back".
I don't know what will work for you and I wonder if it isn't just "time" that works for any of us.
My love to you. My heart out to you.
Your feelings are completely understandable. You will feel relief and grief as you process your loss.
I felt relief when my parents died. I also grieved. They were a major part of my life. I loved them and missed them after they left this world.
Did I miss the hard times? Seeing them suffering, my exhaustion as a caregiver and so on? Absolutely not!
I was certainly relieved for the tough times to be over, for my parents and myself.
I think losing a spouse or a child would be so much harder than losing a parent.
Honestly, I would rather die before my husband does because I can’t bear the thought of losing him. He has been the love of my life for over forty years.
Nacy,
I love that you planted a garden.
When my dad died, my best friend gave me a beautiful tree to plant in my backyard. She gives trees to friends to celebrate the birth of a child and to honor the life of those who have died.
Every time I see my tree, which has grown so tall and strong, I think of my father.
I can't add much from what's already been said. What you get from this forum is at times advice, but more often wisdom. Wisdom from those who have, in time, overcome their grief. Your emotions of Guilt and Grief are all too common for those who have lost someone, especially a spouse. The grief is unavoidable; it's a testament to your love for him. The guilt IS avoidable. It's self imposed. You did the best you could in caring for him. The sacrifices you made for his care are heroic. There should be no guilt in that.
I lost my wife of 52 years to AD six years ago. I worked through my grief long ago, but there's not a day goes by that I still don't think of her. I have great memories and like to reminisce and recall our life together and to think of how lucky I was to have her for all those years. And that's the other G word... Gratitude! For me it's gratitude that overcame the guilt and grief.
Grief is personal and some people work through it quickly, while for others it takes way too long, or they never let go. Grief is not something you're stuck with for the rest of your life. Extended grief can prevent you from moving on with your life. There's a great book on working through grief, "Getting to the Other Side of Grief, Overcoming the Loss of a Spouse" by Susan J. Zonnebelt-Smeenge.
"On the other side of grief lies renewal. And you can get there."
I wish you well.
Please don't feel bad about feeling relief. You know that you did the very best you could with your husbands care and should be relieved that he is no longer suffering with his broken brain and you you no longer have to worry about his care.
He's at peace now and you should have peace about it all. It's time now to take care of yourself and figure out what your new life without your husband will look like.
It won't happen over night, but will take time, so be patient and just enjoy the happy moments when they come and grieve when the sad moments come as well.
May God bless you and keep you in the days, weeks and months ahead.
I can't put it any better than what Alva and funky grandma said
I just wanted to add when my dad passed, at the beginning of covid. Life was hard for everyone. But what I remember the most was my body felt heavy, moving was an effort. I remember trying to plant spring bulbs and just the lack of energy was so hard. It's different for everyone but that is what stood out the most for me
Best of luck moving forward 🙂↕️🙏
Your grief is still so fresh, it’s natural to feel numb and exhausted, among other things. I felt that a burden was lifted from both my husband and I when he died and I knew that the relief I felt did not diminish the love I had for him.
I’ve also learned that connection to people that have experienced similar grief can be very powerful— by reaching out here you are making that connection, and I think I can speak for others in saying that being able to share our experiences helps us as well.
I joined a weekly support group associated with hospice very soon after my husband died. It’s been vital for me, especially now, a few months down the road. No one else can understand in the same way what you’re going through, even though we may grieve differently. So no one blinks an eye when somebody says they still talk to their spouse, or expect them to walk through the door or kisses their urn good night a year later. I think the one thing I would recommend to everyone is finding that support space where you can talk about your experience.
If you like reading, the books that have been most helpful to me are “The Grieving Brain” by Mary Frances O’Conner and “It’s OK that you’re not OK” by Megan Devine which I think is a terrible title for a good book. Also podcasts/TED talk by Nora McInerny. For some reason, Elizabeth Kubler-Ross‘s stages of dying got shifted onto grieving, no longer generally accepted as a universal grief concept. Even though I knew this, I still questioned myself when I didn’t have any anger(still don’t).
Here are my last thoughts on grief support, and my group through a poem I wrote. Blessings to you.
………………..
Out in the world
I try not to disappoint when asked
”How are you doing?”
But here I don’t need to pause
before letting the pain spill over;
no need to protect anyone
from the exquisite grief we share.
…………………