Life After ALS: Grief

September 6, 2016

There is no time table for grief. 

That whole “grieving for a year after losing a spouse” idea is bullshit. Each person walks through it differently. It can punch you in the gut just as intensely a year after the loss – or two – as it does the day of. And you never know what will trigger it.

Two weeks after the death, the support dries up and floats away like cremains. The surviving spouse becomes one of the walking dead, trying to rediscover who they are, trying to create who they want to become, all the while grieving the years of togetherness that were just torn away. The sleepless nights go on and on. Learning to cook for one person. Learning to go to the grocery store without them. Buying a car without them, or even a new TV. Painting the house.
You try to find friends who understand, who aren’t afraid of your “mood swings”, friends who and will try to guide you gently back into the world of the living. Finally, one day, you laugh about something and then you pick up your phone to call or text your spouse and tell them about it, and it hits all over again.You send your child off for their first day of kindergarten, of high school, of college, and no one understands why you are curled up in a ball. Your doctor tells you to get a colonoscopy and you have no one to drive you so you start crying, and the doctor tells you “we need to talk about your emotional health”, aka “you should be over this by now, we need to talk about meds.” You go to a family reunion and your spouse won’t be in the picture this time.

Just because someone’s Facebook page makes it look like they are doing ok, it doesn’t mean they are. It means they are doing the best they can, but most of the time it feels like they will never be ok again. It means they have stopped posting how they feel because they hear “you should be over this by now” or “have you talked to a therapist?” or they post and its crickets.

Grief is a roller coaster. Sometimes you just glide along, and then there is a 60 degree plummet and your stomach is in your throat. The difference is the plummet isn’t over in 60 seconds, and it takes a lot longer for the climb on the other side. 

What can you do to help your friends and loved ones who are grieving? Let them know you are thinking about them. Let them know they are loved. Let them know that you don’t understand how they feel (unless you really do), but you will listen with an open heart. Let them take their time. Don’t push them to work through things because it makes you uncomfortable. Keep an eye on them in case they really do need professional help, but don’t assume they do just because they are still grieving 6 months, 12 months, 2 years later. 

We will always grieve the loss. That doesn’t mean we are unhealthy. It means we loved deeply. We won’t show you most of the time just how bad it can be. We don’t want to burden you with it, and we don’t want to be told how to handle our emotions.

Just love us.

Why I Share

Over the past month, I have shared information about ALS as well as my and Mary’s story. I wish I knew what Mary had thought/felt during her journey with ALS, but she didn’t share that with me, so I have shared my part of the story. What I have shared has been shocking and heart-wrenching to many of you, yet I have not shared everything. I have not shared the month from hell when she decided to get the trach or the weeks after that. I have not shared the futile struggle to find her a place to live outside of the hospital after she was trached. I have not shared the last month of her life. Those stories will be told another time.
 
My purpose for sharing has not been to shock or cause pain or fear. I have shared in order to raise awareness. ALS is not what Hollywood wants to show you. It is not pretty. It is an ugly, evil disease that steals everything and leaves scars on those left behind, scars that may never completely heal. What I have shared is the reality that I experienced.
 
If you know someone affected by ALS, whether they are a PALS, CALS, friend or family member, now you have a glimpse of their daily lives. Reach out to support them, bring food, give the CALS a break for an hour so they can take a shower, stop by with a puppy, kitten or bunny. Just reach out. It is almost impossible to ask for help while living through ALS. Volunteer or donate to a reputable organization that supports people living through ALS.
 
Today it has been 19 months since Mary crossed to the Summerlands. I promised her that when she was done fighting, I would fight for everyone else. This months’ posts have been one way I continue to do that.
 
Mary’s journey with ALS was the worst 22 months of my life. The last month of her life was hell. She lost the battle with ALS. But in the end, ALS will not win. Love will win.
 
Love always wins.

Snippets

She sleeps
I watch
Her jaw relaxed, her brow relaxed
I kissed her when I came in
She didn’t stir
 
She sleeps to the hiss-hiss of the ventilator
the whirr-whirr of the Kangaroo pump
the shhhhh-rrrrrr-shhhhhh of the air mattress
The sounds of hospital staff on the other side of the door
have become her lullaby
 
A knock
A nurse
“Time to be turned, Mary”
 
“Hi” she smiles
I ask “Are you happy to see me?”
“Of course I am” she mouths
We pull her up the bed
put pillows under the other hip
the catheter leaked on the chux
it will be bath time soon
 
Housekeeping comes in
I wipe the sleep from her eyes and she drifts off again
 
Penny took Sheldon to Disneyland
“I never go to go to Disneyland”
No, you didnt, My Love
And I am sorry
We didn’t make time for that
© 2015 Denise M Allen

Broken and Shattered

I had very little knowledge of ALS before Mary was diagnosed.

I did know it was 100% fatal but I had no idea how much damage it could do before killing you.

Now that I know more than anyone should, every time I see or hear of someone being diagnosed, it breaks my heart. When it is someone I already know and count as a friend, it is even more heartbreaking.

My broken heart shatters each time I hear that a friend has died. In the last 10 days, two people in my circle, my ALS community, have died. Despite living with an ALS diagnosis for 4 and 10 years, both took sudden turns that claimed them quickly. They have left behind people who were my rocks while Mary was sick, while she was in the hospital, when she died and since that day.

Each loss tears the scab off of my own ALS battle wounds. Each loss brings me back to Mary’s journey, her final days, her last day, and the intense depth of grief that knocked me flat. And I know what my friends are feeling: the shock, the anger, the disbelief, the surreal and intense roller coaster of loss and grief.

Knowing the diagnosis does not make it any easier. Knowing that this round of pneumonia, this urinary tract infection could kill them does not make it easier. Platitudes do not help. “They’re in a better place now” doesn’t help. “They aren’t suffering anymore” doesn’t help. All you know is that the ALS bullet train has just derailed, that life as you have known it over the last 6 months, year, five years, ten years, has changed in a second. Who you are has changed in a moment. Your life will never be the same, the scars will always be there, the loss will always sting.

Someday, there will be an effective treatment. Someday, there will be a cure. Someday is not soon enough. Someday is too late for too many people.

So today, my heart is shattered again, and I reach down to gingerly pick up the pieces and try to put my Heart, my Self, back together again, knowing that once again it is different than it was a moment ago.

The Bucket List

When you hear an ALS diagnosis, once you get over the initial shock, you start to think about everything on your bucket list that you might be able to complete, and everything that will never happen. Some people have enough time, slow enough disease progression, to check things off of their bucket list. For others, the progression is so fast, that the Bucket List remains unchecked.

The summer before her diagnosis, July 2013, we drove down to California for my parents’ 50th Anniversary. Fortunately, driving meant we got to see a few things Mary said she always wanted to see. We drove out of our way so that we could drive through the sequoias. We saw the Golden Gate Bridge and drove over it. We stopped at the Jelly Belly factory. She loved it.

After diagnosis, some friends and I planned a weekend getaway at the Oregon coast for February 2014. I had a gut feeling it would be her last trip to the coast – her last trip anywhere. It was a difficult, challenging, and uncomfortable trip for both of us. She could no longer safely walk, so she spent most of the weekend in a stuffed chair, hooked up to her bipap, looking out the sliding glass door at the pond, watching movies and chatting a little. She was pretty quiet. She wouldn’t let me take any pictures of her. At the time, I think she was upset that I had dragged her out there. But before we left, we drove along the coast where she could see the ocean out of the car window one last time.Image may contain: sky, bird, outdoor, water and nature

A few months later, my parents came up for a visit, and I rented a wheelchair van so we could take her a couple of places in the power wheelchair. We went to a local nursery so she could wheel through the plants, looking at the roses and herbs like we had done a hundred times before. But she wouldn’t buy anything. We also took her to the Evergreen Aviation and Space Museum. She got to go into the Spruce Goose, and look at old planes and motorcycles. She got to see part of the Berlin Wall, and chat with my dad about the space program he had worked in while looking at planes he had worked on. She had always loved aviation and space vehicles. She pushed herself and we stayed almost all day, despite the heat. It was worth every moment to see the joy on her face.Image may contain: one or more people, people sitting and shoes

That was the last place she went, other than to medical appointments. So many things on her bucket list that we never got to do.

You never know what life will bring to you. Take the opportunities to fulfill your dreams while you can. Take the trip. Go to Disneyland. Swim with Dolphins. Skydive. Whatever you “always wanted to do” – do it!

Why I’m doing a daily post

Yes, I am going to post a lot about ALS, about Mary’s journey, about my journey. It is a story that needs to be told. It does not mean I am dwelling on anything, or stuck in a particular place. You do not need to worry about me. I am sharing my story this month, openly and frankly, in public posts, in the hopes that it will help to educate people about ALS and how the disease is different for everyone. Yes, some of my posts will be hard to read. Yes, you can share my posts. And if you do not want to read them, I get it. I wish I hadn’t lived them. But I did. Nothing will change that. I promised Mary that when she was gone, I would help everyone else. This is just a part of what that looks like.

May is ALS Awareness Month

ALS takes everything away, piece by piece, and leaves incredible wreckage behind. It is one of the cruelest diseases on the planet, and there is no treatment, no cure. Please educate yourself. Provide emotional support to those living with ALS and their families, and to the families who are grieving. Donate money for research and caregiving. “Drink One for Dane” is Friday, May 5 at all Dutch Bros. Coffee locations. When the Ice Bucket Challenge comes around again, when someone asks you to donate to the ALS Walk, or any other ALS-related fundraiser, please don’t think “we already did that” – so much more help is needed in so many ways. In loving memory of Mary DeWitt (1958-2015).