Taking care of a man who always insisted on doing all things physical

When Arlie and I were married, my first adjustment was learning not to open my own door. He wanted to open the door for me always. He wanted to take the trash out and was adamant about pumping the gas. He would be upset if I were driving somewhere alone and had to get gas and pump it myself. In fact, in the fourteen years we were married, I think I only pumped my own gas a handful of times. That it, until his MS got so bad that it was too hard for him to get out of the car to pump the gas.
For a man like my husband, losing physical ability was devastating not only to his body as it was being decimated, but to his sense of self worth. The only reason we survived this armageddon was because he learned to open up to me. Unfortunately at first he would just stew, watching me load his power chair on the ramp on the back of the truck as I struggled physically and he was sentenced to the confinement of the inside of the truck, only opening up to me when I was apparently at my wits end with him angry after I had extended myself physically to my limit.
One of the best things we did was to see a marriage counselor. She was able to bring us to feeling like we did when we were first married. If you and a loved one are struggling with a degenerative desease like MS I encourage you to give your relationship the gift of seeing a good marriage counselor. No one can get through MS alone, not the patient or the caregiver.

Arlie's response to a diagnosis of terminal cancer with about 2 1/2 years to live

Four years ago, receiving a prognosis of two and a half years to live, Arlie posted this on Facebook.

What would you do differently tomorrow if you won the lottery for more money than you could ever spend? What would you do differently tomorrow if you found out you didn't have too many tomorrows left? Well today I found out that I don't have too many tomorrows left. So, I will try to treat each day as though I won the lottery. I have always said that if I won, I would still work at Costco, that working there is more fun than work. I'm constantly surrounded by so many loving coworkers and members. It's hard to explain the happiness I feel. 

Today, I went to the oncologist and found out that my kidney cancer has spread to my bones. The average person lives about two and a half years after being diagnosed. I will be doing an IV treatment, which is far better than chemo. The IV treatment will hopefully slow down the cancer.

I feel this is a gift. I have prayed on more than one occasion for God to take me quickly and not to slowly wither away to turn into a vegetable like my mother, who had Multiple Sclerosis and died a slow death. I can't tell you how deeply it hurt my grandmother and me to see her die like that. We unintentionally stopped going to see her. I do not wish for my wife to remember me like that or have that guilt that I carry. I want her to remember the me I was when I was healthy.

I believe to die is to live forever with Jesus, and that is far better than winning any lottery.  The sad part is leaving my wife behind. She is the kindest, sweetest person I have ever known.  I pray that I can spend eternity with her. One lifetime isn't enough.

-ARLIE-

My husband got to walk on the beach with me again thanks to this modified Segway

A message that brightened my day

Last week it was one year since Arlie passed away. I received the nicest message from someone I never did meet. But Arlie did come home from working telling me what a great day he had and that he'd bought two kids a churro.

"Shari.... I have been seeing your posts on Wednesday and can’t believe it has been a year. I frequent Costco (we have 6 kids), and always have my youngest with me.... Karis is now 6 yrs old and just adored Arlie.... he was her favorite part of Costco. This past October 13th we went in and this time we also had my son Dax with us. Karis started getting excited as we pulled up saying ‘yeah, we are going to go see Arlie’.... Dax (who was typically in school when we went) asked ‘who is Arlie’.... and Karis with a twinkle in her eye just smiled and said ‘you’ll see’. Sure enough Arlie was there with a big hug and the teasing and joking started with him and Karis. As we were checking out Arlie came up to me and asked if he could buy the kids a churro with his special Costco gift card. Afterwards the kids wanted a picture with him.... he asked me to make sure I sent it to his special love Shari. Please know how much we loved him, and miss him. I think of him often and look forward to seeing him again in heaven.... he was such a gift to all who let him. You are in my prayers!"

The Costco Guy

 My husband was the strongest guy I knew (physically and it turned out mentally also). He could scale our wall and hoist himself onto the sofit on the second floor with his fingertips. In 2011 we rode our bikes downtown to watch the Fourth of July parade (in 108 degree heat). Round trip it was probably 16 miles. Then we rode another 6 miles to San Ramon Central Park to watch the fireworks. My husband, Arlie, was limping as we walked our bikes across the field, his face was red and blotchy. "Your limping" I told him. I've been told I have a knack for pointing out the obvious. I was waiting for him to tell me he twisted his ankle or something--whatever it was that injured his foot. Instead he just barked back, "I know!" It was so strange so I didn't bother him anymore. After a couple hours with the sun starting to set, he cooled down and his leg was working again. He asked me if we should go home, and I said yes. This would be the first year we didn't watch the fireworks. This was also the first year that Yosemite required permits to hike Half Dome-something we also did every year. I was able to get the permits which was a miracle. They were for September. We never went. He was diagnosed with MS in August. My sister, whose daughter had just become a neurologist told me I had to take him to a neurologist when I shared what a weird fourth of July we'd had. About a year later, my husband saw one of the leading minds in MS who diagnosed him with Primary Progressive MS. He slowly lost use of his right leg and hand (then arm). He was right handed so he had to learn to do everything with his left hand. But he started having numbness in his left hand too which got him wondering how long it would be before his left side followed in his right side's footsteps. He also was a man's man and insisted on doing all physical things around the house requiring strength--man jobs. It killed him watching me struggling with jobs he wanted to do to begin with. Although he handled the diagnosis amazingly well, he did become depressed and didn't share his thought with me. I need to mention that his mother died of complications from MS when he was 19. As a child he had to go live with his dad and alcoholic step mom (which he equated to being a POW) while his mother was institutionalized because his grandparents could no longer handle caring for her, and the little hellian he was becoming(in his words). You know what snapped him out of his depression? October, 2014 he was diagnosed with terminal cancer with a life expectancy of 2.5 years. And he remained happy about that. I wasn't--but he was. I'm afraid to say that on any site centered around MS. It truly is not that he wanted to die--he didn't! In fact, he became convinced that he really wasn't dying (and was happy about that). When he was diagnosed with cancer the community rallied and presented us with a beach vacation and the news cameras were there. If you google The Costco Guy you'll see the story. The story went viral and as a result, his dream came true which was to be the number one fundraiser for children's hospital. After people saw the story they were coming into Costco practically throwing money at him. He said he needed a pole up there at the front door. He worked for Costco for 24 years, and they gave him the job as the greeter as the MS progressed because he still wanted to work even though he could have gone on disability. The last three years of his life we were on a new, different adventure and he went out with a bang (the bang being the number one Costco Fundraiser for Children's Hospital).