One Year Check-In

I can't believe a whole year has passed since losing Bill. It's difficult to describe where my head and my heart have been throughout all this time, but I found something online that is pretty close. I don't know who wrote it or even where I found it, and if you should know the author of the following,  please let me know so I can give him credit for his writing. It beautifully describes my year:

"As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.
Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”

It's funny that I read this toward the end of my first year as a widow because I've been doing a lot of painting to relax. One of my latest canvases reflects the words above. I'm not saying I'm out of the water. Far from it. The waves are still coming, they're still washing over me. But I'm learning to let them wash over me, knowing it will calm down again, that I'll be alright. 

Letters to My Husband - Things I Wanted to Say but Never Did

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

Time Flies, Time Stands Still, When You're Grieving

It has officially been eight months since hubby was diagnosed with ALS. The difference in his physical mobility is like day and night. In May, just after his diagnosis was confirmed, we flew to South Padre Island in Texas for some sun and relaxation. He was walking on his own, talking clearly and eating without problems. Of course, his energy wasn't what it used to be, but he went walking along the beach and spent time in the pool like he always liked.

Fast forward to mid-November, when we took a cruise to the Caribbean. We took his wheelchair with us, which was a good thing. The distances from airport entrances through security to gates would have been impossible for him. Luckily, being in a wheelchair made us feel like VIPs, going to the front of lines, breezing through security and getting on the plane first. Waiting to embark on the ship was a nightmare as there was a three hour standstill. I dread to think how terribly uncomfortable, even impossible, the wait would have been without his chair. As it was, he was able to sit the entire time.
Once on the ship, Bill was more in his chair than out. Everything was on "the opposite end" of the ship. The only deck that was "handicap friendly" was the promenade, due to thick carpeting on many other decks, so  I was worn out by the end of the cruise. I think I may have built up some muscles. However, it was a good trip, relaxing in its own ways.
We had an emotional breakthrough on the third day out. After having a breathing, gagging, choking episode, Bill was sitting on the bed with me next to him and I started crying in front of him. I managed to say, "This sucks. We're supposed to grow old together." That prompted Bill to start crying, and the flood gates were opened. 😭 I know it's tough on Bill, but he's the man, the husband, the father. Because of this emasculating disease, this attitude is slowly being stripped from him, yet still he hides his emotions. For him, for us, to cry and mourn together, was cathartic and much needed. We are both traveling on that journey of grief with all its steps, and we are mostly in tune with each other.
Speaking of grief, even if you can manage the attitude of "Living with ALS" instead of dying from ALS, you have started on your way through the steps of grief. You probably started the day your ALS diagnosis was confirmed.  According to my therapist (yes, caregivers need therapists, too), everyone goes through these steps, but in unique ways.

"The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost (are losing). They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief." 

(RecoverFromGrief.com)

The above site has an abundance of information to help caregivers and those with ALS deal with their feelings of loss.
The site below, while disagreeing with the "stages" of grief, has a free downloadable Grief Recovery Handbook that I found helpful.

The Grief Recovery Method

The following site writes about overlapping "phases of adaptation" instead of sequential stages of grief with helpful suggestions on recognizing your feelings and moving ahead toward acceptance.

Caring.com

My list is short, but it's a start. After forty years of marriage, I am going to need all the help I can get. I hope you get your help as well.