I started this blog . . . how long ago was it, February 2019? . . . to document my husband’s progress through early-onset dementia. My counselor suggested writing my thoughts down as a way to deal with the emotions I was going through and it evolved into this. As time went by, I realized it might be a tool to help me find him the help he needed or to help someone else experiencing this same thing navigate the challenges we had already tackled.
It wasn’t easy, it wasn’t always fun, but I was dedicated and determined to be the best caregiver I could. And now it’s over.
I feel lost.
This grieving process has been the worst roller coaster ride ever. Of course, I miss my husband – the love of my life. The man I was married to for 37 years, my best friend. But, I’ve spent the last four years either advocating and fighting for doctor’s appointments, a diagnosis, treatment (any sort of treatment!), care . . . you name it. Dementia has been my life.
Now that it’s all over, I feel lost.
But even if I hadn’t spent the last four years as a caregiver, I spent the last 37 years in a wonderful relationship. When I say that he was my best friend, I’m not kidding. M had a way of making me laugh, no matter the circumstances. He could look at me out of the corner of his eye with a little grin and I would know exactly what he was thinking . . . and it would crack me up! Now, I’m not saying we never had disagreements or arguments – we had plenty! But one of us usually had something funny or interesting to tell the other so we couldn’t stay angry for very long – we had too much to talk about!
All that has ended now, and I feel completely lost.
I really thought this blog would naturally come to an end when M was gone. But friends have suggested that the trek through the grieving process might also be worth exploring. Writing about it might be helpful, rather than just sitting here in the house, wallowing every day. We’ll have to see.
I’m so sorry for your loss and I totally understand how you feel, dementia is so all consuming and we’re losing the person for so long yet then find we’re lost ourselves. Gradually the pieces will come together, the happy memories will return and you find who you are now. I realised I couldn’t go back to who I was before the dementia journey as I’m different because of it… xxxx
So very sorry for your loss and that you feel so lost Linda. My thoughts and prayers are with you daily.
Oh Linda I’ve been so caught up in the rollercoaster ride of emotions from Corey’s marriage on Feb 12 to my mom’s passing the next morning that I’ve failed to even check on you. I cannot imagine the emptiness you’re feeling. And mix that with relief from Matt’s suffering and I imagine it’s hard to even k is what you feel. Please give me a shout for a walk or a meal soon. I’d love to catch up. 🥰
Hi Linda,
Think of you often. If you need a place to retreat for a bit and regain your footing – check out the
Well of Mercy – it’s just down the road in Harmony, NC. Great place , kind and loving staff. Beautiful grounds and a place to connect with spirit. I found it a place of great healing at the lowest point in my life.
Holding you in heart,
Diana
I wish I had magic words, but I don’t. You write so beautifully, and it helps the rest of us understand this journey that you didn’t choose to take.
Hi Linda, I will remember that feeling of being lost when my husband died in 2009. He had had ALS for the previous two years and it was a fairly quick downward slide. It seemed to me that we went through loss after loss after loss. Like you I was his advocate and I was so busy trying to think of the next thing we would need (wheelchair, Hoyer lift, hospital bed etc.).;Towards the end it required 24 seven care and I remember getting through that period of time by just telling myself to do the next right thing. Then when he was gone I sat around feeling frozen not sure what to do with myself or anything else. I donated all over our equipment and took care of all the estate stuff. And then we had our first charity golf tournament to raise money for treatment of ALS. We called it the 4 Pete’s Sake ALS Foundation, a 501c3, and I have managed it for the last 13 years. I took a course a few months after he died and that was my second foray back into life. The emotional part is still with me and I miss them every day. But it’s not the acute pain that I felt in the beginning. I’m glad you’re writing about it. Everyone’s experience with grief is unique but I do think it’s important to express it in someway. I like hearing from you and I think it’s therapeutic as well.
So glad that you wrote again. I have missed hearing from you. This will be helpful. I know that already.
Keep sharing your journey, Linda. Beyond writing for you own mental support I am sure there are lots of us who can relate, either now or in the future.
How you deal with loss of M and all the changes in your life that you did not expect to happen could help others as they (we) possibly begin a similar journey.
Keep treasuring the memories and visualizing M looking at you from the corner of his eye.
You are in my thoughts and prayers! Go outside enjoy the flowers and trees that are coming alive. Cherish your memories don’t stay in grief very long not good for your soul and spirit. You are such a wonderful and caring lady share that with the world. Come back to RH I miss you!
Selfishly I do hope you continue to document your experiences as you continue through this period of grief. The work didn’t end with his death; the work continues as you go through the twin jobs of living the grief of longing and missing and pain, and the job of living into and adjusting to your changed life without that beautiful man beside you. We all bounce back and forth between the two. Okay, I’ll speak for myself who lost my beloved husband to dementia 3 months ago today. One day I am weeping, submerged in longing for him, missing him, his absence filling the room. The next day I am taking steps into the world as just me, the individual. Then back again. I have spent much time on the internet looking for blogs and YouTubes of women such as myself who are recovering from the years of exhausting caregiving, the pain of grief, and the journey into new life. The journey didn’t end as i walked away from his deathbed. The journey continues. I will be grateful to follow you as you take this very real and challenging journey if you choose to continue to write. Bless you.
And what a wonderful story you have told about your love! You are amazingly honest and resilient, but I know grief is hard! Please know I am grieving with you and sending healing hugs your way! ❤️
I imagine this next year will be difficult. Going through the “first” of all the special days without your partner. Do what feels the most healing for you whether it’s blogging every day for a while or not at all. This is another whole new normal. I wish you peace as you mourn and find your footing.
Oh my dear. I haven’t stopped thinking of you and praying for you. I know your heart aches and my heart aches for you. The pain doesn’t go away because the love doesn’t go away. You have made such a difference and have come so far. The journey you began with your husband may we’ll have ended for him . ..but perhaps not for you, as you may find you have more to do with this whole thing. Keep writing, journaling, and processing. You’ll get to where you need to be.
Love you, sweet, brave Lady!
Sending you so much love and prayers for peace.
I wanted to send you some love,my brother has dementia he’s 47 my family & I have been white knuckling it on that rolercoaster you speak off.
He is now in a nursing home and at least safe.
All our hearts are broken.
I wrote a poem for people who have been through this & wanted to share it with you.
To all you amazing weary souls who have been robbed by dementia leaving gapping holes.
Were love used to be
I hear your plea
It’s not fair
Not knowing how to care
For the person that’s no longer there
To all you tired & drained soldiers of love.
Always putting everything above.
Your weary souls
I see you
My message Is one ..do not forget to love yourself,please check your OWN mental health.
For you are special & you cannot pour from an empty vessel.
I know this mestate is a bit random but I read your blog & I think your brave.
Once I recover from the “roller coaster” a bit I would like to help demetia charities ect though art..I have a plan..just need to pick my own self up first.
Sending peace
Lara 🙏🏼💫