“Those Who Have The Strength and the Love to sit with a Dying Patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body.” – Elisabeth Kubler-Ross

 

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May is ALS Awareness month. ALS TDI (the people that actually use donations for research) is challenging everyone with ALS or caring for people with ALS to write and share the truth and their experience about ALS. My friend Cory is asking people to write their truth and he is sharing that through his page this month and he asked me to write a little about my experience. I didn’t write this for my blog, but I thought I would share it here…

(Also mostly for my Dad – I know there are a lot of typos below… I just wrote and emailed it to Cory, I didn’t proof read, didn’t think I could, with out changing it and that’s not what this one is about!)

– xoxo Victoria

I met Victoria after Duane had passed. Shes a firecracker and has helped us so much venture this voyage. Duane was a lucky man. Read her story.

DAY 4: Victoria Dunstone
The last night I had a full nights sleep was in August of 2015. I know that because it was the day before we officially moved from Northern California to San Diego. That was the last night I didn’t have to wake up to roll Duane or give him meds. The last night I didn’t have to wake up to check that he was breathing, adjust is pillows or help him to the bathroom.

My husband and best friend, Duane, was “officially” diagnosed with ALS in October 2013. We already knew… but I will never forget that day. I will never forget the words his doctor said, the look on Duane’s face, the feeling of defeat. He was 6’2”, 185 pounds, a fire captain, we water skied and fished everyday. We were healthy and active. How could this be happening?

At first we were lucky, his progression was slow but after tearing up his shoulder on a fire, and being forced to have surgery in June of 2014 the progression became rapid. He never used his right hand again. His speech had already started to go and very quickly it became indistinguishable to most. His balance was affected but he still refused a walker. Within 8 months he had had stitches in he head three times, broken his jaw, broken a toe and was completely unable to use his fingers and or hands.

In January of 2016 he finally agreed to a scooter and a manual wheelchair. He could barely talk and could no longer do anything alone. After a few major falls trying to get on our boat, where we lived, he agreed to move into a house where we could have a real shower, kitchen and could actually live easily. We still had an amazing life. I figured out how to get him into our ski boat alone, and onto our pontoon. I learned how to maneuver him from the toilet to the shower, dress him, feed him, and within in a few months manage his meds.

We started hospice in June 2016. Hospice is a the most amazing thing in the world. We had amazing nurses and care teams. They taught me how to manage meds, dose meds and care for Duane on this high level.

We fought a lot. I never did enough. I didn’t do it fast enough. I didn’t do it efficiently. I didn’t do it his way.

We had a lot of toys over the years and Duane took care of all of them. We kept our toys as he progressed, but they needed to be maintained so it fell to me. I am proud to say I can work on diesel engines, out board motors, inboard motors, wire anything that needs to be wired (that’s my specialty). change pumps in all kinds of boats, change a garbage disposal, a dishwasher, fix a dryer, change a carburetor, and pretty much do all the basic car, boat and household fix it jobs. I am very handy. You definitely want me on your team.

We still had an amazing life. I was still able to maneuver his wheelchair on the edge of the dock and close enough to the boat and time the flow of the tide to get him on the boat alone. We would go out fishing. I would drive the boat (it was 47’ long) and run up and down the stairs all day to make sure he was not too hot, not too cold, feed him, help him pee. I would cast out fishing lines, take us to the fishing “grounds”, reel the fish in, fillet the fish and cod the fish. But he was so happy. We were happy.

Duane very, very adamant that he wanted NO aides. No aide to help with the shower, the toilet or anything. I carried him and leveraged his weight against me to take care of everything he needed. I cared for him, our dog, our home and our “toys”. At the end of the day I would fall into bed exhausted. My alarm was set for every hour to get up and give him his meds, if he didn’t need to be rolled sooner. I never slept.

As he got worse I would sit next to him all night making are he was breathing. During the day it would take over a hour for me to feed him a small meal. He would choke and I would have to reach in and pull the food out, pound on his back, tip him over to allow gravity to help dislodge the stuck food. It would take over a hour to shower him and sometimes two days to help him go to the bathroom.

He refused all medical assistance. No feeding tube, teach, suction or oxygen. No eye gaze speech machine, I read his lips but I already knew what he wanted, no power chair no hoyer lift. It was me and him… and our dog. We fell. We laid on the floor crying together coming up with a plan to get hime up. We fell again and now had a plan. We fell again and again and again.

Hospice visited every week and couldn’t believe we were still doing it alone. That’s what he wanted.

We went on crisis care July 5, 2017. I was taught to change his morphine pumps, give him injections into his ports, swab his mouth, give bed baths and keep him comfortable. On July 7 I finally agreed to a catheter, he was in pain, we think he had an infection and he was completely out of it.

He passed away at exactly 12 noon on July 8, 2017. We were alone, the nurse had run out to get family and with my holding his hands and Buddy laying beneath him he took his last breath. It was honestly the most amazingly peaceful thing I have ever experienced.

ALS sucks. But it taught me so much.

Lessons I never would have learned with out it. It taught me patience and kindness and how to love on a level I didn’t think was possible. It taught me that money doesn’t matter, toys don’t matter and false relationships don’t matter. That when life gets tough and hard and you want to quit there is someone always there to hold your hand. ALS taught me that life is short and precious and you need to live everyday full of love and intention. It taught me that death shows you who your real friends are who your family is and who has your back. It taught me that no matter how great of a person you were you aren’t guaranteed a long, healthy life.

ALS taught me that love always wins.

Now I am almost 10 months out and I am still tired. I still can’t sleep. I am worn out and heart broken. I miss my best friend. But I am so so grateful for the time we had together, the encyclopedia full of things he taught me , even though in the moment I didn’t want to learn them. I am thankful I was able to sit with him and love him through the worst imaginable situation. I am grateful I gave him a life he loved.

ALS taught me what love really is.

 

https://www.classy.org/campaign/the-real-als-als-awareness-month/c181258

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2 thoughts on ““Those Who Have The Strength and the Love to sit with a Dying Patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body.” – Elisabeth Kubler-Ross

  1. This story is heartbreaking, but the strength you have is inspirational. What I fear even more than living in this horrible nightmare they call ALS, is the unimaginable trauma my loving family has to endure every day and the scars they will live with forever. For every person with ALS, there are so many others suffering because of it. Thank you for sharing, I know it must have been painful to relive. May God Bless you, I hope you find peace in all of those beautiful memories.

    Liked by 1 person

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