The focus of my blog is changing. I will still have insights, resources, experiences, information and links to share with you. But grief is something that doctors don't talk about until your spouse or family member or friend is gone. Not even when you have watched him or her slowly lose all his physical capabilities and his dignity and his ability to communicate.
By the time you learn about grieving, you are steeped in it. You have been through horrors you couldn't have imagined. ALS is like being pecked to death by a chicken, while being gagged, handcuffed and in leg irons. Being a caregiver is like being forced to watch this one day at a time, remembering what he or she could do and can't anymore, and grieving already for this small part.
So, dear caregivers, this blog is more for you than the people who have ALS. I am pushing my way through my grief one step at a tie, one day at a time. I'm not going around it, not ignoring it.
Besides considering grief support groups and one-on-one counseling, both very helpful and successful, I have a great support system and knowledge of many activities, exercises and resources that have helped to a certain degree already. I would consider many of the exercises that these groups and counselors suggest.
One of these is journaling. Not a writer? First of all, it's not a book. You don't have to show it to anyone. It's for YOU, so spelling and punctuation are out the window. Secondly, who says you have to write in a journal? Half of mine are drawings (sometimes stick people), magazine pictures and words I cut out of magazines.
My blog for now will be a sort of journal, but I'm willing to share it with you. There were so any things left unsaid. After 40+ years of marriage, what else is there to talk about, right? So I decided to tell my husband, Bill, the things I did not say to him while he was alive.
If this were on real paper, you'd likely see water spots from fallen tears. His death is very recent, October 15th. But a digital journal won't show you the pain I feel writing some of my letters here. Of course, it will tell you the pain. But it will also tell you how much we loved each other, how much joy there was in our marriage, how many bumps in the road we survived without breaking down. So without more ado, here's my first entry. I hope it helps someone to release some held-in emotions, or gives insight into this monster named ALS.
Dear Bill,
Forty-one years being married is a long time. It's so long that couples start to run out of things to say to one another. When we moved from house to house, there were conversations of mortgage rates, furniture, taxes, decor and yard work.
When we had jobs, we'd complain about rude co-workers or terrific bosses (or the reverse). When we went out with others, we'd mingle but always come back to each other, knowing who was the designated driver that night.
When we started a family, our talks changed to our son's quirks, his accomplishments, the cute things he said, and our dreams of his future. When our daughter came along (surprise!), we shared the experience all over again. The only change was gender and living up in a different state.
Over the years, our lives veered away from each other's. Not too far, but enough to search for things to talk about (other than the kids' antics) over a quiet dinner out. Crafting and scrapbooking took my attention away, while TV took yours. You took off in a career in IT, while I worked close to home for the church, and volunteering in Scouting. You started bowling and I started attending weekend crops.
Looking back, it seems like we were headed toward a change, and not a good one. But LOVE PREVAILS. Before things got serious, our hearts and minds must have recognized something was amiss. By the time your doctor appointments and testing became more frequent, you confided in me your fears and suspicions. You would have carried the burden yourself as long as you could if we hadn't started communicating better, stepping outside our homemade ruts, reconnecting and becoming more open and more intimate.
Thank God you told me and we were able to share that burden together.
Thank God we were able to research and learn as much as we could.
Thank God for the ALS Association, Disability Benefits, Veterans' Health Benefits and Compensation, VA Housing Grants, VA Vehicle Grants, and Property Tax Exemption. (this link is for Cook County, Illinois; check your own county and state for this)
Thank God for Handicap Placards (must find your own state DMV website) and thrift stores for things insurance didn't cover.
Thank God for ALS Support Groups where we learned so much more and met people that would become our friends.
Than God for family and friends and social workers and ALSA reps whose caring manner and support and help we didn't even know we needed.
And thank God we worked together to root out everything we did to make this journey more comfortable.
We ended our marriage loving each other more than we did when we said our "I Do's", and for that I am truly thankful for all you gave to me.
Until we meet again,
Pat
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