Like a Volcano

 Dear Bill,

It's been almost seven months since you left us. I've learned to take care of a lot of things around the house, the yard, the budget, etc. Almost everything from the days when this house looked like a medical center are gone now

And here's a funny story - as I was taking the tarp off the deck furniture (Spring, finally!), what should I find but one last piece of equipment from your journey - your legs!! Or what we used to call your legs. LOL

Remember the AFO's? The ankle-foot orthotics? They were sitting on one of the deck chairs, hidden under the tarp! They gave Wendy and me a laugh over the way we teased you when you asked for them and we called out, "Get Dad his legs" or "Take Dad's legs off."

A good laugh and then a good cry. With good memories come bad ones, I'm afraid. I hated what ALS did to you, did to all of us. It took away our marriage. Our 41st anniversary passed and I didn't mention it because you were in no condition to celebrate or even care. If I had, I was afraid you might start crying, which affected your breathing in a very bad way. So any time I cried, it was alone.

We were supposed to grow old together. You worked your ass off and didn't get to retire. We were going to go to Niagara Falls. We were talking about buying a cabin in Seneca at Woodsmoke Ranch. We could have spent many a summer and fall day there relaxing, grilling, taking hikes in the national parks next door.

It took away your chance to walk Wendy down the aisle when she gets married. She really feels cheated by that loss. She gets angry when a high school co-worker talks about how she hate her dad or how she doesn't talk to her dad at all. She goes off on them and tells them how lucky they are to still have one.

It killed you, not fast, but slowly, taking away your voice, your ability to move, to swallow, to eat, to laugh, to cry, to enjoy life, to be a man, to talk to me. I especially missed the talking. You went from lowered voice to missing consonants to slurring words to hand motions. Of course, we all made jokes about some of those hand motions and got a smile out of you at times.

But the frustration levels on all our parts when we couldn't understand you were heart-wrenching. Your mind was fully functioning, but you had no outlet for your thoughts and opinions and your rage at your fate. But I did.

Remember when I brought you your coffee and just as I was setting it down next to you, it slipped and I spilled it all over the table and floor? Of course you remember, who could forget?! I exploded, screaming at the top of my voice, "F#*k me, f#*k me, f#*k me!" and burst into tears. Your mouth dropped open and you looked at Wendy, who was stone-cold speechless on the other side of the room, as if to say, "What? Who? Huh?"

And I just knelt down and calmly, cleaned up the mess, apologized to you both and left the room to get more coffee. It was like a volcano that had a short, strong burst of lava and then settled down. I guess I needed to get some emotion out, huh?

We all went through a whirlwind of emotions, sometimes together and sometimes by ourselves. After your breathing got bad, it was mostly alone or with Wendy. We couldn't bear to see you cry and then gasp for breath, having to use that suction machine.

Wow, this is such a downer of a letter, hon, but ALS is a downer of a disease, which affects every member of the family. Wendy and I saw a bereavement counselor last month. The hospice organization offers that service for up to a year after your death. We were able to get some emotions out, but I think Wendy and I, having each other, are pretty steady on our own path toward recovery.

We're having your memorial/celebration of life in nine days. I have a lot of things to get ready, and my emotions are again all over the place. But I'm hoping this will bring some closure to Wendy and me. And for mom and Dee. Your co-workers are coming, some of my extended family, neighbors and friends, my co-workers...

You touched a lot of lives, Bill. Especially mine. I had you for more than 40 years, so I can't complain too much. As you would say, "you could, but nobody would care." I miss a lot of things about you, but your smile and your humor I miss most of all. I hope you're keeping them rolling on the floor up there, dear.




Always and forever,

P.S. (I bought that cabin in the woods. I'm closing later next month).

Happy Birthday, Honey

The following post was supposed to be published in January, but never made it past draft status. While "out-of-date", there is information for caregivers that may help  keep their sanity slightly 
longer than they thought they could.  So here it is, four months later...

Dear Bill,

Wendy and I quietly celebrated your birthday yesterday. We started the day at IHOP for breakfast. You loved to go out for breakfast when you could still eat. I'm so glad we decided to go out and try different restaurants before your swallowing got too weak. It seemed that the first thing to go was your ability to swallow easily. Our mornings and nights out to restaurants came to an end within six months of the diagnosis. I missed those outings, but I understood your aversion to gagging and choking in the midst of other diners. Even with all the resources available from the ALS Association  and the ALS Clinic staff at Hines VA Hospital, it got so bad that eating at home was the only option for you at that point.

After breakfast we ran over to Menards for a couple items. I heard your voice inside my head saying, "I like Home Depot better," but I had a gift certificate for Menards so...  Once you were bound to a wheelchair, the only store you would go to was Home Depot. I think you worked hard to come up with things to buy there, but knowing you liked to wheel around the lumber and piping, etc., I tagged along. I think it must have been a sort of escape from the house and the constant reminder of your disease. It was therapy for you.

The same could be said for the theater. When you were still using the walker and the manual wheelchair, we saw movies practically every week. We saw more movies in those few weeks than we'd seen in the whole year before! Thank goodness for half-priced Tuesdays! But again, movies were an escape from our real life situation. For a couple hours, we could forget that we had a deadline.
We went to see the Star Wars movie. It was awesome. Wonder Woman we saw twice. Lots of Marvel movies made our list, too. There were so many others I can't  remember them all.

I'm glad we got out and did so much while "the getting was good". Like traveling. It was smart of us to take that vacation to South Padre Island while you were still walking, and the cruise while you could use the walker. We had so much fun going to the islands with our friends. My only regret is that we didn't get to Niagara Falls, which was a place you had really wanted to go.
The neurologist told us when you were first diagnosed to "go places and do things you've put off and you really want to do." Another way of saying, Get your bucket list out and start crossing off the activities.

The time we had from diagnosis to death went faster than we thought. Even faster was the ability to enjoy things. It took us by surprise, even with the warnings from the clinic team. We didn't go everywhere we wanted to go, visit the family members we wanted to see, talk about the things we should have told each other. Lots of missed opportunities because we ran out of time.

But the time we had was grand while it lasted, wasn't it? Maybe not the last 12 months, but that first 40 years of marriage?  I wouldn't trade that for the world.

Love you, babe,

Working like a Maniac

Dear Bill,
De-winterizing the house and yard. Man, I didn't realize how much work went into getting ready for spring and summer! And add the deck which needs sealing-whew! I have 45 minutes left before I have to get a second coat on the backyard deck and stairs (do you really have only one paint tray??). Then I can say it's ready for your memorial in May.
There are a lot more projects I need to finish before then, but right now I think the poster below describes how I feel.

Sigh, if only...

Take care, my love,

Creative Outlets - Journaling

Dear Billy,
I celebrated another trip around the sun, the first without you teasing me about my age and me catching up with you. I have to say, this last year was a humdinger, filled with trials, terror, heartache, heartbreak, loss, exhaustion and depression. I survived (obviously) but it took serious support and caring from family, friends and professionals.

I also had loads of emotional and creative outlets to release the pressures of my experiences. Because of the people and the journals, the correspondence and the painting, the knowledge that I am not really alone, just widowed, I can go through each day with at least one smile on my face. Most days I smile a lot, and often it's due to a funny or loving memory of you.

I attribute this ability to live mindfully in each moment and by my extensive journaling. Most people think, "I can't write" but journaling is not just writing. It is expressing yourself any way you want or can. I just finished the page above. I like to cut out large pictures of faces from magazines and cut them in half. Then I try to sketch the missing half. I could have left the page with only the sketch, but I decided to fill the blank spaces (I hate white space) with quotes about life and art.
Using things I had left on my desk from a previous craft project, and some colored pens, I poured my emotions onto this page. And it felt GOOD. I don't usually show people my journal pages, but it is so liberating to let out the thoughts and feelings, anger and fear, joy and astonishment, the "whole box of crayons" as I call it.

I can write it out, type it out, cut out magazine words and pictures, for your pages. I don't always have a theme to each page. I've used a leftover  notebook from your Bella's art supplies, and have found some awesome journals at thrift stores (yes, dear,I still shop at Goodwill).  The journal above is a composition book from that women's retreat I went on with Joan, in the good old days when the term ALS was something to do with Facebook and the ice bucket challenge.

I'm coming to the end of this journal, but I am in the middle of several others, so no worries. This blog is a journal of sorts, writing to you even though you've gone on ahead of me, and trying to enlighten and encourage other caregivers how to stay on the path of sanity and positivity. Anyway, I was going to post my new journal page on my crafting blog, Patacakes' Pages, but journaling has helped me through some of the roughest times in my whole life most recently, and some of my readers here on this blog might benefit more from what I write than the crafters who visit me on my other blog.

Either way, I would still like to link up my journal page to the ART*JOURNAL*JOURNEY blog for this month's "Recycle and Collage" challenge. If readers want some inspiration to journal, take a look there. It will blow your creative mind.

But remember, journaling is a personal outlet - you don't have to be a writer, a poet, an artist, a "crafter" - you just need a pen, pencil, crayon or marker, scissors, a magazine and a glue stick. I get a lot of inspirational quotes from Pinterest and print and cut them out for some of my pages. However you decide to journal, have fun with it. Be honest. No one else will see it.

You knew how much I needed to journal, Bill. You gave me the time and space to look through magazines and cut out pictures and words. Sometimes I'd show you a page I'd made, something that I thought would cheer us both up. Most pages I kept to myself. Some are full of hope. Some are dark. Some are full of my favorite things. A few just feature a beautiful, peaceful scene with a single quote on the page - that's all.

Thanks for understanding, Bill. Just one more thing I love about you,