Wednesday, March 25, 2015

A year without Mark

March 25th of last year started like any other day. I spent the day with Jerry, and later that evening, I called Mark's nephew to let him know that we'd be coming over the next day to visit Mark. His nephew had his neighbor call me back to tell me that Mark wasn't doing well, and that the hospice nurse said it was only a matter of hours before he'd pass away.

I was stunned. I had just seen him the day before, when I went with my parents to his nephew's house to visit him; and while the situation at his nephew's house was FAR from ideal, Mark seemed to be doing okay physically, all things considered. He seemed unhappy to be there, with people who were basically strangers to him, but there was nothing we could do about that (I didn't write about all this at the time, because I didn't want to risk having Mark's nephew forbid us from seeing him at all). I didn't know that when we left that day, it would be the last time we ever saw Mark. But since I had said my good-byes several days before, I felt I said everything I needed to.

On March 26th, just after midnight, Mark passed away. And honestly, I felt so relieved for him.

I know many of you know Mark's story, and you followed along as I wrote about the progression of his lung cancer. But I don't have his whole story in one place, to make it easy to read for someone who wasn't able to follow along, so here goes:

Mark was a friend of my family for about 35 years (since before I was born!). Back then, my dad owned an auto repair shop a few blocks from our house, and he used to see Mark walking around, usually smoking a cigarette and collecting bottles to cash in for the deposit. Mark was intellectually disabled, and because of this, lived in a group home about a mile away with other men who had intellectual disabilities.

Because of his intellectual disability, Mark was pretty difficult to understand when he was speaking; but the more you got to know him, the more you could understand him. (Kind of like with kids--moms can understand anything their toddler is trying to say, but a stranger just hears a bunch of syllables). If it wasn't for his speech, you might not know that he was disabled.

My dad offered him a job at the auto shop, doing odd jobs like sweeping the floors, allowing Mark to earn some pocket money. My dad and Mark became buddies, and my dad started taking him fishing once in a while.

Mark and my dad at my dad's surprise 60th birthday party

I'm not sure when the tradition started, but we also started celebrating Mark's birthday with him, because he didn't have any family (or so we thought). He told us his birthday was on Halloween, so we would have cake and ice cream before handing out candy to the trick-or-treaters.


Even when we moved about 20 minutes away in 1997, my dad continued to pick up Mark several times each year to go fishing; and always, on his birthday. I always looked forward to Mark's birthday. Mark was the most grateful person I've ever met, and he never expected anything for his birthday, which made it even more fun to give him gifts or just wish him a happy day. When he opened a gift, no matter what it was, he loved it. When we asked him what kind of cake he'd like, or something like that, he'd just say, "Oh, any old cake!"



Anyway, I always looked forward to Halloween. Our tradition was that my dad would pick up Mark, and then we'd have dinner and cake at my parents' house. And after Mark opened his presents, we'd sit in the driveway, where my dad would make a campfire to stay warm while we handed out candy to the trick-or-treaters. For the past 5-6 years, I really found myself looking forward to it more and more; I think that was because I grew fonder of Mark each time I saw him. He was refreshing to talk to, because he never had a single complaint about anything.


His birthday in October 2013 was just like any other. Then in November, my dad told me that Mark had been diagnosed with Stage IV lung cancer. As cliche as it sounds, I felt like someone had punched me in the stomach. I was just in total disbelief. Mark was a smoker, and had been since he was a kid--but it was the only thing he really had that was his. As much as I dislike cigarettes, I never judged Mark for that--smoking was all he'd known for his whole life. So I shouldn't have been as shocked as I was when I heard the news of his cancer, but I had the hardest time really believing it.

I had a cold at the time, so I couldn't go to the hospital to see him until I was healthy. Meanwhile, I reached out on my blog to ask people to send cards to Mark--which I knew he'd LOVE. Mark didn't have family or friends outside of his group home, really, so I wanted him to feel surrounded by well-wishes. And holy cow, did you all respond! He received hundreds of cards.

When I went to visit him in the hospital for the first time, I brought the first batch of cards to read to him (Mark couldn't read). He was thrilled to see me, of course. My dad and I were there for several hours, and I read him all of the cards before hanging them up around his room.


My dad spoke with the doctor, who basically said that Mark didn't have long to live--the cancer was in his brain, his spine, his liver, everywhere. My dad immediately wanted to bring Mark to live at his house in hospice care, to avoid chemo and radiation and all that. It was then that we learned Mark had a nephew, who we knew nothing about. His nephew showed up to the hospital, and because he was immediate family, got to make all of the medical decisions for Mark. He didn't like the idea of Mark going to my parents' house, because they "weren't family", and instead, opted for chemo and radiation in the hospital.

Mark hated hospitals, and was aching to go home to his group home, but the home couldn't take him in because of the required medical care that he would need. The hospital couldn't keep him any longer, so his nephew signed him over to a nursing home. Mark would spend the next three months in the nursing home, and my dad and I tried to take turns visiting every other day, so that he would have a visitor every day. His nephew never went, so it was just my family, which is why the cards you all sent meant so much! Mark would tell the nurses, "I got so many people that care about me! Look at all these people that care about me!" and point to all his cards.

This nurse was amazing. There was no room left on the other wall, so she
spent a long time stapling his cards to his curtain!

For the five months between Mark's diagnosis and his death, I got to know him better than I had for the prior 30 years. We had some really great moments (funny and sad). Mark loved junk food, just like me, and I made it a point to bring him something each time I went to visit--a "fancy" Starbucks coffee (he was used to instant coffee, so anything better than that was fancy!), a strawberry McDonald's milkshake (his very favorite), hushpuppies from Long John Silvers, popcorn chicken from KFC, Mary Jane candies, and a ton of other things he requested.


Mark didn't have many possessions, and certainly had no money, so these were all little luxuries to him. I looked forward to visiting each time I went because I was excited to bring him something new. Every time I visited, it was like a little vacation from the stress at home, because Mark was so happy all the time, and a true joy to be around.


Mark's number one goal was to get out of that nursing home and go back home. My dad and I talked to the physical therapists to see if there was any way we could get him to be functional enough to go back to the group home. They talked with the owner of the group home, who said that Mark had to be able to walk on his own. So Mark made that his mission--every time I visited, he'd tell me about physical therapy and that he's going to be walking soon so he could walk out of there and go home.

In the cards he received, Mark had gotten some money--a few dollars here and there, and it really started to add up. I socked it away in an envelope for him to use as he wanted, and when he had a couple hundred dollars saved up, I asked what he wanted to do with it. He thought about it for a little bit, and said that he wanted to have a party for the guys at his group home, complete with pizza and cake. (This is the story that I would later tell at his funeral... because it showed just what kind of person Mark was. Always thinking of making others happy!)

We made Mark's wish a reality in mid-February. He had enough money for the pizza and cake, and with enough left over, a goodie bag for each of the guys in the home. A lot of the men that live there have been forgotten about by their families, and they were all so grateful for everything--just like Mark. Mark had a fantastic party, and was able to walk into the home using a walker, which made him very proud. I hadn't seen him smile that big since before he was in the hospital!





After Mark's last chemo treatment, his therapists said he could go home if it was okay with the owner of the group home. Ordinarily, she said she wouldn't have let him come home, because it was a huge liability; but she'd known Mark for so long that she agreed. Again, Mark got his wish to get out of the nursing home, and he was thrilled to be back at the group home.

Almost as soon as he got home, however, he started to deteriorate very quickly. We begged his nephew to let us take him to my parents' house under hospice care, but his nephew said that when it came to that, he'd bring Mark to his house. Mark was bedridden, and was no longer able to stay at the group home. My mom and I went to the home to spend the day with him, and that day was really what I think of as my last visit with Mark. I had some time alone with him, and got to say everything I wanted to. I brought him a milkshake, but he couldn't drink it, which was sad. He slept most of the day.

Here, I'm trying to explain to Mark in front of the hospice nurse what
"hospice" meant, so that he could sign himself into hospice instead of
going back to the hospital at that point. She determined he wasn't of sound
mind to make the decision :( So we had to beg his nephew to do it.
My last photo of Mark. He was waving good-bye.

Mark's nephew signed him into hospice care and took him home; and just a few days later, on March 26, Mark passed away. Once again, I asked a favor from everybody reading my blog: to do a random act of kindness in Mark's honor. I loved reading about those! A few people took ice cream or other desserts to their local nursing homes for the residents, which I think is fantastic (and I know Mark would have loved that idea).

So, here we are, one year later. There hasn't been a single day that has gone by where I haven't thought of Mark in some way. No one close to me had ever died before, so this was very new to me, and I didn't handle it well. I ate my feelings away, and gained 20 pounds. I have regrets that I didn't really get to know Mark years and years ago, but I am also grateful that I was able to spend so much time with him when he likely needed someone the most. It feels like it all just happened recently, and it's so hard to believe it's been a year already!

Thanks so much to all of you who are still reading and who sent your love to Mark in some way--you made a big difference in his last few months! And so now, I ask again... since tomorrow is the anniversary of Mark's death, please try and do something ("any old thing!" as Mark would say) nice for someone else. A random act of kindness. And if you'd like, come share it here in the comments!

(To read all of the posts about Mark, in reverse chronological order, you can click here. The first post regarding his diagnosis can be found here.)

23 comments:

  1. As someone who has spent the last 17 years working with people like Developmental Disabilities i have to thank you and your family for being such an amazing family! So many people like Mark lost touch with family and were never given the chance to work like he was. Thoughts are with you.

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  2. I can't believe it's been a year. I will have to think of something to do in his honor.

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  3. What a lovely, lovely post about Mark. He touched many lives because of the thoughtful way you always wrote about him, I think we readers were all hardcore pulling for him and so sad when he passed. Even tonight as I was reading through this, my husband (who doesn't read the blog) asked, "Is that Katie's nice friend who passed away?" Hugs to you and your family, and of course we'll do random acts of kindness tomorrow!

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  4. Thank you for sharing memories of Mark. I can't believe it's been a year. My thoughts and prayers are with you and your family.

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  5. I've thought of him often over the last year. What your family did for that man has to be the kindest thing I've ever heard of. He probably would have never imagined that so many people would be remembering him long after he was gone.

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  6. I work for a nursing home and just a heads up: ice cream would be lovely and my residents would adore it, but if we were to recieve an unannounced donation from someone with no connection we'd have to chuck it for safety reasons. So if you don't know anyone there, it's just a local place to you, try a non perishable gift like a homemade blanket. My crew loves the fleece ones that you tie the edges!

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  7. Reading your posts about Mark made me realize so many things about myself and life in general. It taught me quite a bit about being more grateful for the little things we get to experience every day. Thank you, so much, for sharing his life with us. Hopefully, it gives you peace of mind to know that, through you, he touched (and helped) so many people.

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  8. I can't believe it has been a whole year already. He was so lucky to be part of your family as you all were to have him.

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  9. I'm sitting at work with tears running down my face. I just moved my brother with developmental disabilities into a group home yesterday. Like Mark, his family (excpet me of course) has forgotten about him. It just makes me so sad to hear things like that. They are like anyone else and need people to support them. What your family has done for Mark is wonderful. I've just started to read your blog and I can tell I will really like it.

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    1. I am praying for you and for your brother.

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  10. I can't believe it's been a year, it feels like 6 months. But I know your care and love especially in his time of need had to mean everything to him.

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  11. I'm crying! What a touching story. Hugs.

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  12. I can't believe it has been a year. Sending condolences to you and your family today <3

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  13. Your post brought tears to my eyes--I was just thinking the other day that it's probably been close to a year since he died. Thank you for sharing his story again, he touched so many lives through you.

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  14. What a beautiful post. Literally brought me to tears. I think life is made up of relationships. And you, your family, and Mark were so lucky to have had each other. Enjoy the memories of Mark. I will find something to do today in his honor and yours. Thanks so much for sharing.

    Dana

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  15. Great Post! Life is so hard sometimes! Praying for you and it is so hard to believe it has been a year! I lost a dear friend one month ago and it is so painful!

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  16. Gosh, I can't believe it's already been a whole year. I will definitely do some random act of kindness(es) today in Mark's honor. He was so lucky to have you and your family to care about him. On the other hand, you reminded me that his nephew was/is such a tool! Why would anyone so removed even care; you'd think he would have appreciated that you all wanted Mark at your parent's house to take care of him. It must have been a "control" thing and I'm sorry for the emotional pain you must have gone through at the time. Yep, Mark's definitely in a better place now. ~ Janet

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  17. I had the opportunity to do something for someone today. There was a man sitting on the sidewalk outside the door of Kroger today. He had his bike leaned up against the building and had a filthy duffel bag beside him. I think I've seen him hanging around Kroger before. I looked for something to get for him while I was shopping. I wanted to get something that is a treat but yet has some nutritional value so I got him a box of Nutri-grain bars. He was still there when I went out so I gave him the box and he was very grateful.

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  18. Hi Katie! I've been thinking about this post and Mark all day. I really wanted to do some kind of random act of kindness, something I've always wanted to do! I ended up going out to dinner tonight with a friend of mine at a local Mexican restaurant, still thinking about Mark. Our waitress was the sweetest girl. The place was PACKED (I should probably state that I'm from Wisconsin and everyone starting coming in to watch the Badger game tonight) Not only was our waitress one of about 5 girls serving people but she was also pregnant and looked so tired. You would think with the place being as crowded as it was, people would be understanding but I happened to overhear the rude man sitting at the table next to us, telling off our poor waitress that his service was terrible and numerous other bad things to her. I don't even think he left her a tip! When she came with the bill I knew what I wanted to do. I left her a 100% tip with a note on our receipt that not all customers are bad and thanked her for the great service. I hope it at least made her smile! I know I did knowing I did it in honor of Mark :) Thank you so much for opening up and sharing his story with us all! It means more than you know.

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  19. I think Mark would be so happy to know so many nice things are going to be happening over the next day or so, and all because of him.

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  20. So sad that the nephew was so controlling and then didn't even really care. Makes you wonder what was in it for him.

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  21. Hi Katie! Just wanted to let you know about 2 RAOK I did yesterday in honor of Mark. I was headed to the grocery store and saw a lady with a cane and a basket of groceries in her motorized cart stopped at her car. She was getting ready to put the groceries in her car & I offered to unload them for her. We had a nice chat & she thanked me several times. Then I went to Subway to get dinner & the young man behind me was getting just a soda so I let him go in front of me. A little thing but made me feel good to do something nice. Thanks for writing such a beautiful post about a great man.

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  22. Still pulls at my heart strings. We all were so lucky to "get to know" Mark through your blog.

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I'd love to hear from you! I read all of my comments, and if you have a question, I do my best to respond; sometimes, however, I get busy and forget to go back to reply, so if it's important, just email me! :)