Sick and broken system, part one

Part One.

I mentioned somewhere in my earliest posts about always dreading growing older because I didn't want wrinkles and sags, or the aches and pains that come with aging.

I still don't want those things. I've heard it a thousand times and have even begun saying it myself, but "growing old ain't for sissies."

In fact, I'm going to fight aging with everything I've got and every spare dollar I might have — except I don't have any spare dollars, so the botox is safe from me.

I really never pictured growing old as being anything more than looking different (i.e., less attractive) and having fewer abilities to do enjoyable things.  I didn't give aging much thought until I hit 40, because I didn't want to think about it. Frankly, it scared me.

Then Mom had her stroke. If I thought I was scared before, now I'm truly frightened for reasons beyond vanity. As a result, I've been spending the past six months of my life not only dealing with my parents' illnesses, but also coming to terms with the inevitable fact that unless I die, I'm going to get old. (Profound, huh?) I might not get to be one of those cute little old ladies who travels the world holding hands with the love of her life. I might not be one of those feisty women still kicking up her heels at 80.

Instead, I might suffer the reality of what millions of older people have to endure — and what I've witnessed since Mom's stroke: lonely, dejected, sad, fearful, lost, empty and forgotten lives.

All I've been able to think since seeing all of these residents in various facilities is, "Lord, have mercy."

Ashley's "Coach Wil" Story

I love this story, shared by Ashley Ingram. The stories keep coming, and I thank you all so much. Please continue to send them to me. I'm  having a good time building that memory book!

ASHLEY CARTRITE INGRAM

I am a 2001 graduate of Randall High School. I knew Coach Wil as just that, coach. But my coaching interaction came when I was younger at summer basketball camps and such. By the time I was in high school my athletic ability didn't rise above some other strengths so I parted ways with basketball sometime after my freshman year. Coach Wil continued to treat me with such kindness and attention. His presence is one of the most reassuring I've known. He always spoke to me, showed genuine interest in my life and would say, "Cartrite, you've always been one of my favorites," which I'm sure was his tag line for everyone, but he said it with such love, I always believed him. Coach Wil is a man that I've always had the utmost respect for.

As life has gone on, I've gotten married and began a family. For eight years my husband had been on staff at Hillside Christian Church. A highlight of my Sunday's would be when I would run into Coach Wil. He still treated me with such kindness and attention. Almost three years ago, my family moved to Lubbock to begin a Hillside campus in our college city. Since moving, my husband joined the teaching team at Hillside. Often after Brad would preach, I would see Coach Wil and he would be so encouraging of Brad's gifts and tell me what a great job he did. I knew it must be odd to sit in a room while your former students' husbands preached, and I've wondered how that felt for people like Coach Wil, but he continued to make me feel important and forward-focused by the kind, genuine words he would speak. He may have called us something like "guppies" a time or two, but that's neither here nor there. :)  

Brad now returns to Amarillo regularly to preach. The most recent time he preached, I sat in the 9:30 service looking around. It's funny how much can change in three short years (not to mention three months or even three minutes). I didn't recognize a single face in that full room. Then, I saw Coach Wil. He sat across the room from me, by himself. Once again, his presence was so reassuring. To recognize one face, that of a man I completely admire and respect, was a gift of grace to me that day. 

When I read your blog posts, I took note of the dates. I realize now that Coach Wil was in the middle of his sickest days ... and he was still at church.  I was speechless.  I would love to know the sermon Coach Wil would preach to us, the guppies. 

That day he reminded me that when you find hope in something beyond yourself, you can't help but find refuge in the place where God is proclaimed. Especially in life's hardest moments. We all sit on the brink of meeting God soon. Coach Wil just has a better sure measuring stick of his time than most of us. So to a man who spoke life to me so many times, may you find peace in knowing life is just about to begin. 

We are all made for an eternal home. This earth life goes fast. You've done it well. I wish I would have walked across the room to find you a few weeks ago and tell you, "Coach Wil, you've always been one of my favorites!" And I mean it.

My sincerest love, respect and prayers.

Musings from a very busy week

Dorsey captured this moment recently. 

This past week has been a whirlwind of activity in our household. Since my dad came home from the hospital, and I let everyone know he is at home on hospice care, we have had visitors, visitors, visitors! And food, food, food. Wow, we have a lot of good cooks in this town! Thank you all very much!

I observed a few things last week that warmed my heart, yet also stabbed at it.

People really love my dad! The visits, the stories ... everything overwhelms me. I can't imagine living a life in which so many people love me. Wow. One thing that stands out for me from the stories people have sent in is the way he treats everyone kindly and seems to make everyone feel important. I can only hope to follow his example during the second half of my life.

This activity in my home is healthy but heartbreaking for my mother. Oh, how I wish I knew how she is processing all of this. I wish I knew her thoughts, and I wish she could express her thoughts as accurately as she's probably thinking them. I know that seeing all of this activity and knowing hospice is here, plus seeing my dad on oxygen, using a walker, etc ... all of this is telling her what is happening — what is going to happen as it's happening — so that she can grieve properly.

One of the things I worried about so much before my parents were back together in one place was that my dad would be there for her one day ... and then he wouldn't, and she wouldn't understand. She would think he had abandoned her. She gave us real reason to believe that when she was staying in facilities; Dad would be gone a little bit, and she would express anxiety and anger at him.

I think now, she will understand more fully, although I'm sure there will be many, many hard times for her when he's gone.

When Dean and Jo Ann Weese visited for two days this past week, my mom was actually with her friends, too. Jo Ann and Arlyna (my dad's cousin who now lives in Oregon) sat with my mom for two days, even if they said nothing at times. My mom listened to the conversations, and we talked to her, and even though she didn't talk much, I know she was pleased because she smiled. Just a few times, she would tell Jo Ann, "I don't like this."

But what she was saying was, "I don't like that I can't visit and interact like I used to."

Andrea's "Coach Wil' Story

While I'm taking some time to collect my overwhelmed thoughts on all the overwhelming things going on around here, I'm happy to share other people's stories with you.

As a side note, before you read this, the email came to me in the middle of the night, and I had just been up with my mom. I was winding down from being with her and decided to read my dad-story emails. When I read this one, I busted out laughing ... so hard the dogs came running up the stairs to see what was going on. I laughed for five minutes straight until my husband was so irritated with me that I had to shut up and go to sleep.

Thanks for making my night.

With Andrea Burrows Ables' permission: (Kim, this was before Cole was born.)

"Coach Wil was an amazing coach, mentor, husband, father and grandfather. I played for him and was a member of the 1998 State Championship team. Coach Wil was an amazing coach. He knew the game inside and out. He taught us so much more than just plays on offense and man-to-man defense. He broke the game down and showed us how to beat any opponent. We knew how to read the defense, and when to flare or curl. He taught us how to set screens, and execute an offense. He taught us everything about man-to-man defense. He, along with the other coaches that we had at Randall, inspired me to become a coach. Most everything that I teach now, I can honestly say I learned from him.  

"Coach Wil was not just a great coach, but he was an awesome family man. Nicki was with us all the time and was just as much a part of our team as he was. He was so loving to her, and was so proud of his family, especially Jordie. Coach Wil would light up when Jordie would come to the school. We were also treated just like we were his daughters as well. We knew he loved us.

"One of my favorite Coach Wil moments was in the locker room before our game in Levelland. He was giving his pre-game talk, and a player who I will not name (Keisha), ripped one really loud. It was kind of an awkward moment until Coach Wil said, 'You know, you always bet on a horse that takes a dump last.'

"We all busted out laughing. That lightened up the locker room after that.

I am so blessed to have had the opportunity to play for Coach Wil. I will cherish all the great memories that I have with him."

Thanks, Andrea, I love the laughs!

Abby's 'Coach Wil' story

If you haven't figured it out by now, I love getting "Dad" stories — Coach Wil stories to you. They've been piling into my inbox, so I can't stop checking my e-mail in anticipation for the next one. 

As I've said before, I share them with Dad, and I'm putting them in a memory book for Jordie and Cole. We've already had tears, awwwww's, and laughter over these stories. I'd like to share some of them here, too.

So with her permission, today I am sharing Abby Mudroch Goerig's e-mail with you.

"I met Coach Wil shortly after I moved to Randall my freshman year in High School. I had been playing on the JV team in DeSoto and was pretty upset with my parents that they were ripping me from my basketball team.

"I wasn't the most naturally talented at basketball, but what I lacked in talent I tried to make up for with hard work. Shortly after meeting Coach Wil, he alerted me to his off-season rule that in order to play basketball, you had to either play volleyball or run cross-country. Both sounded horrendous to me, but considering I had never played volleyball, I felt the lesser of two evils would be to run cross-country.

"So in August of 1991, I showed up for cross-country two-a-days. I am sure I had never run more than one mile in my life before that. I am pretty sure I was the only new guy; I didn't really know anyone else running, so my plan was just to do just enough to get on the basketball team.

"Coach Wil would tell us the route and then follow behind us in his car. As the fast runners would take off leaving us slackers behind, Coach Wil would pick us up in his car. He'd load us all up in the back and zoom us up to the fast girls, where he would again let us off to run until we fell too far behind, and then he'd pick us back up again. I am sure that I spent more miles in his car than I did on the road. 

"Sometime during that first month of cross-country, I realized the fastest seven runners made varsity. If I could make it in that top seven, I could get my letter jacket and the ever-coveted "Home of a Randall Raider" sign for my yard. I wasn't all that far behind the seventh runner, so on the day we had the race-off for the top seven spots, I ran my tail off and made it.

"I may or may not have died after the race, but I did well enough to make varsity. The next week was the first meet. I planned to keep my 7th place position, as it was a win-win for me. The first five girls on our team were very serious, and they had plans to make state. I figured as long as I stayed out of their way, it would all work out fine. I got to letter, and I didn't affect the team any as only the first five to finish scored points.

Update on Coach Wil

My dad came home from the hospital yesterday to be in hospice care. He is in good spirits, and as I type this, he is sitting in a recliner (with oxygen on) and watching ballgames. Of course. What else would he be doing if he's not mobile?

I believe his spirits have been kept high by every single person who has visited, either before the hospital, while in the hospital, and now that he's home. He, as I always say, is a social butterfly. (Wish I had gotten some of that!)

I have been sharing with him the stories you all have been sending me. He loves them. I think he has figured out that lots of people love him. I'm also putting these stories together in a memory book.

I encourage you to do two things:

One, continue to send me stories. jmwilmarth@yahoo.com, or send him cards c/o Jami Wilmarth, 2407 S. Hayden, Amarillo, TX 79109

Two, come visit. Yes, it's more than okay, as long as you don't mind cats, dogs and people. It's crazy sometimes, but that's okay. Dad deserves visitors who want to visit.  Come to 2407 S. Hayden.  You might want to call me first (806-236-0418) to make sure you get the most out of your time.

Thanks so much for your love, concern, prayers and well-wishes.

She's my mother

Christmas, 2014

Change and grief tend to produce powerful reflections. I certainly wade into deep water!

Some of my greatest reflecting and contemplating happens in the middle of the night. Tonight — or more accurately, today — I got up at 12:20 a.m. because I heard through the monitor my mom calling out and crying.

I found her in the middle of another anxiety attack, which have increased the last two days. I know she knows deep in her heart what's happening to my dad right now. She knows he's in the hospital. She knows he has cancer, and she knows he is dying.

She calls out for him, and she frequently wails, "I don't want Dad to die."

Mom's grief for my dad has become more apparent and open as the days go by.

Tonight, though, my mom cried and kept expressing, "I wish I could have given ..." "I wish I ... " "I wanted to ..."

And she named names of family members. It was as if she were expressing regret that she could not fulfill her former role as the family giver and caretaker. It dawned on me, once again, that part of my mother's grief in the middle of all this turmoil has been for her former self — her identity.

This breaks my heart, and once again tonight, I silently cried for all my mom has lost.

My mom has dedicated 55 years of her life to taking care of my dad, and I do mean taking care of him. She has loyally stood by his side, supported him, loved him and, yes, guided him. She is a major influence and force behind the man we love. She's kind of like the assistant coach, plus the team's manager, plus the owner.

She also has dedicated and sacrificed 50 years of her life to being a mother. While raising Kim and me, and before her perfect grandchildren came along, we filled the other half of her life. Everything she did revolved around us: Our activities, our needs, our wants, our safety and our wellbeing. Everything. She gave so much for us, much more than we realized at the time.

She also ran our family household; she cooked, cleaned, paid the bills and earned a good chunk of the family income as a teacher, librarian and technology instructor.

She is the reason my peers teased me for having a large vocabulary at a young age. :-) She is the reason I made good grades. She is the reason I survived being a coach's kid. She is the reason for so many other good and positive things in my life.

And she did all of this through some truly difficult, difficult times.

We're all just walking each other home

I had an enlightening conversation with my sister, husband and brother-in-law the other day. Vince, the forever entrepreneur, told me he could help me make money off my blog. Dorsey was all for that!

I said, "You mean, the $13.77 I've earned so far isn't good enough?" (Seriously, click on my Google-provided ads ... I earn a cent or two per click.)

He said "real" money. Then my sister said, "But her blog is about us, about our family. Only people who know us care about it. How could it make money?"

"It's about aging gracefully (that's not really graceful)," Vince said.

"She's had a little of that, but it's mostly about us," Kim said.

And I was just listening, unable to get a word in edgewise. I was thinking, "Really? Is that all this blog is — just a story of our family drama?"

I sincerely hope this blog is more than that — especially because these days, I hate unnecessary drama. Drama days for me are OVER. (How was that for a dramatic presentation?) Drama is one of those ungraceful things we do as teenagers and even, unfortunately, as adults while we figure out who and what we want to be. I've been there and done that ad nauseam, and I'm finished. It's a life I'm not at all proud of.

COACH WIL MEMORIES

I am shamelessly asking everyone who was touched in a positive way by my dad — whether former player in high school, Kid's Inc., Little Dribblers, etc., schoolmates, friends, coworkers and any other type of relationship to him — to please respond to this blog post and/or send me your memories/stories about him.  jmwilmarth@yahoo.com

I am putting together Memory Books for Jordie and Cole, and I would like to compile these as I receive them from you. I also want my dad to see as many as possible.

For those of you who already have sent me or him your kind words, thoughts and memories, please know he has been truly touched, as have Kim and I.

I'm not trying to be morbid by asking this of you (again). I'm just asking for help with a project. Frankly, reading these stories fills my heart with joy as I try to comprehend that I will soon be losing him.

I would like for his memory to live on through these recorded stories.

Thank you for your help.

Caregiving: Week One

The first week with Mom at home with us was good in many ways, but stressful in others.

It's been good because I know she's where she needs to be, but stressful because I don't function that well on little sleep. I've averaged three hours of sleep each night this past week.

The first few nights, I probably could have slept fine because Mom did. I just watched that monitor like a new mom bringing home Baby for the first time would.

After that, however, Mom had all kinds of tummy troubles, which kept us up for hours. That finally caught up with me by the end of the week, and I was quite irritable and physically achy. Thankfully, the last couple of nights have been fine, and I've been able to get a nap or two.

I'm also almost a pro at changing briefs, transferring her and all of those other technical things now. It doesn't take long from so much repetition. I'm also getting some guns on my arms! Oh, and now that Dorsey and I stay upstairs, plus the washer and dryer are up there, my legs are getting a serious daily workout.

In fact, I'm loving watching my MisFit calculate my daily points, calories and steps. Over the top — especially on the days I also run.  I'm even reaching my fitness goals on the days I don't run and lift. Too bad I'm eating like there's no tomorrow. I'm starving all the time!

For someone who has historically struggled with having people in her home — because everything might not look, be or smell okay — I think I'm doing pretty well. We have caregivers, therapists and other people in and out every day. I have my moments of, "Not again!" but I've mostly reached an, "It is what it is," attitude. (I'm referring to appointments with people who give Mom care.)

Dorsey managed to have time to get the new ramp assembled and installed while he was home, fix the broken back door and address a couple of other issues. That relieved some stress. A man named "T" is going to mow and edge for us for a nominal fee.

And one friend has worn herself out preparing food for us. It's all been pretty tasty, too. The meal train is seeing some people sign up, and that has been a great help as we focus on Mom, and because I've had an editing project this past week that has demanded my attention.

You've asked how you can help ...

I will never be able to adequately express the gratitude I feel to each and every person who has reached out to my parents, my sister and me during the last several months. You have shown a tremendous and humbling amount of love for my parents that has kinda really blown me away. 

If you have just now been referred to my blog to keep up with my parents, here's the quick update: Mom and Dad now live with me as my dad nears the end of his battle with cancer, and as my mother suffers from the after-effects of a massive stroke in October; she is unable to care for herself in any way. 

As more people have learned about my parents' health, Kim and I have been asked countless times, "What can I do to help?" or "If there's anything I can do to help, please let me know."

That's always hard to say, because we never know what's going to happen from day to day, but Kim and I have a few ideas. 

• Meal Train. Go to Jim and Nicki Wilcoxson Meal Train if you might be interested in bringing an easy meal to us. While I can and do cook (and bake), sometimes it takes more time and energy than I have. Mom takes full-time care, and though we have caregivers coming in, I still have a LOT of household upkeep going on and freelance work projects. Dorsey travels so much for work. Kim is trying to help Vince run their business, but she's doing it long-distance. We have a lot going on during a time when we need to be with our parents, and they need us.

Adventures of the Mom-included Household

Wow. What an amazing last two days. And you can bet I'm going to hold onto the goodness as if every day after those two will be just as good, if not better.

(OK, so I still need to get my nights figured out ... we'll talk about that later. I got three hours of sleep the first night, and two-and-a-half last night.)

Mom arrived about mid-morning the first day. She was calm, yet quiet, but I could tell she felt pretty content as she seemed to look around in wonderment. She knew she was at my house, with her family. First thing we did was give her the cream cheese pound cake Dorsey had made the day before. It's her favorite, and she ate two pieces. Pretty cute!

I had quite a bit of unloading and then putting things away to do, so Mom, Dad and Lucinda, our new caregiver, sat outside in the bird sanctuary — where, I might add, the doofus birds have not yet figured out they have food, so they continue to eat the cat food on the ledge.  That area is shaded, so without the usual fidgeting and anxiety, she quietly took in her surroundings.

Chloe, the other kitties and the puppies played outside, too. Mom was pleased to have Chloe back, and that afternoon, Chloe curled up in bed with her for a two-hour nap. Just like old times!

During the afternoons we don't have a caregiver, so while Mom, Dad and Chloe napped, I busied myself with laundry and making chicken pot pie for dinner. (Yes, the real deal. I'm already loving being back in the kitchen!) Kim took care of all the medication transfer things for both of my parents, which was pretty darn complicated and detailed! Still, it's all figured out and good now.

I have to say, I'm quite impressed with the video/audio monitor we have. I kept an eye on Mom while she slept, and I can hear if she happens to call out. (However, that monitor has caused me a few "issues" during the night.)

Not once during the last two days has my mom lashed out at us in anger. The only tough emotion she's expressed so far is one of feeling overwhelmed. She said several times the first day, and once during tears, "It's just too much."

When pressed for more information, we discovered she felt bad about all we were doing for her.  We assured her, as I can assure you, this is what we want to be doing. We are so glad to have her.

I have noticed that even though Mom still talks about nonsensical things, she has more lucid moments than I remember her having in a long time. She has even remembered the foods I've been making and what she is eating and wants to eat. I offered her a brownie yesterday, which I had made the night before, and she said, "Yes, I remember you made them last night before I went to bed."

Wow. That might not sound like a big deal, but it is. And Kim said Mom wanted chicken pot pie for lunch yesterday because she remembered how good it was the night before. Another wow.

Perhaps my favorite moment of all so far occurred between 12 and 1 a.m. the first night/early morning. Via the monitor, I saw Mom's restlessness and wakefulness. I went to check on her, and she said she was hurting. Her left arm almost always hurts. Sadly, while she cannot will it to do what she wants and it's a burden to her, she still can feel all the pain it has to offer.

So, I gave her medicine and wrapped her arm in a warm rice pack. We sat and talked, and I rubbed her feet, while we waited for her arm to stop hurting. Sure, I was sleepy, but I felt happy to be there. During that time, she looked at me and said, "Did you ever think you would be doing this?"

I said, "Taking care of you and Dad?" She nodded her head. I said, "No, no I did not."

Nearing the end of another mile in this sad journey

About this time last year, my mom, sister, dad and I sat in Dr. Patel's office to learn the news that my dad's prostate cancer had spread to his bones. The typical treatments for prostate cancer, with which he was first diagnosed in 2011, had failed, and now he needed something new.

Dad qualified for an experimental treatment (Xofigo) — radium, to be exact. The radium would be administered six times over a period of six months, directly into his bloodstream. It was designed to go directly to the cancer in his bones to stop its spread. Xofigo could not cure the cancer, but, like chemotherapy in this case, the radium could buy my dad more time.

He finished those treatments in September, feeling pretty darn good ... although a little bit tired. We all felt pretty optimistic. In December, bone scans showed the cancer had not spread within his bones. He was, however, anemic, and his PSA continued to rise. He started another treatment in the next line of defense: Xtandi. He did okay with it for awhile, but as you know if you've been following my blog, we discontinued it last week because he was having breathing problems.

Kim, Dad and I went to see Dr. Patel on Tuesday to discuss symptom management with him and instead were given the results of Dad's bone marrow biopsy, which he had less than a week prior to that appointment.

As suspected, the cancer is in his bone marrow.