Dealing with grief helped me find my tribe…

picture of my parents and me on mothers day 2013This picture came up on my Facebook feed this week, and it made me step back and think about things.   My life has changed so much in 4 years.   4 years ago on Mother’s day — we were only 3 weeks into my Mothers pancreatic cancer diagnosis.   She had lost a lot of weight and she was trying to deal with a ‘death sentence by cancer’ but she was still my mom.   She was only able to fight cancer for about 3 1/2 months before the cancer was winning.  It was horrible to watch, horrible to live thru, and it’s still painful if I go back and look at my pictures (or my blog) from that summer.    Mom and Dad moved in with me then, and our lives changed.

After Mom died, our focus became taking care of my dad.   We stayed home a lot so he wouldn’t be alone.    We didn’t plan things, because we didn’t want him to be alone.    He was our focus.   We didn’t plan anything — cuz we never knew how he would feel.

In the years I was taking care of my dad – my childhood friend Julie and I reconnected. She was fighting her own battle with cancer.    She was the ultimate Mom and career wise — she was pretty much the opposite of me.    She got married soon after high school, had 5 kids and loved her life in rural Clutier.    I went to college, struggled to find my life’s purpose and eventually landed at the VA, lived in 4 different states,  traveled 20-30 weeks per year and coordinating training around the US and was comfortable speaking in front of thousands of people.    She raised her family, sometimes struggling with health and financial woes, and took a couple of  trips on an airplane.   Our paths were very different, but when we reconnected – we were somehow in the same place.

I lost my dad and my friend Julie in 2016.    To say it was a tough year is an understatement.   I still have nightmares about my Dad’s hospitalization.    Could I have done something different that would have saved him some pain?    After all my blogs about caregiving – did I actually fail when it was time to participate in what turned out to be his final days?   I feel like I did.    It’s been a tough road living with that.

In the last year I worked at the VA we had no budget, and a project that I had poured my heart and soul into was killed.  My job was full of politics and a hater or too.   When that project was killed, I grieved it –actually I’m still grieving it — but I didn’t realize it until recently.    It’s hard when you’ve poured blood, sweat and tears into building a training culture, and you leave with nothing to show for it but memories.

My personal life had changed so much, my work life would changed, and eventually, when it was obvious that I had no passion for the work I was doing — I planned my retirement from VA.     In actuality it wasn’t quite that easy — I had to do paperwork, do math, and make sure that I wouldn’t have to get a job as a WalMart greeter before I could make that decision!  I had promised some people I would keep blogging after my retirement, but my grief has been so overwhelming that I didn’t want to write if it was going to sound like I was whining.

I read a blog this morning entitled 3 things you learn after your mother dies.  The first thing in the blog really touched me.

This is exactly how it’s been with me, starting 4 years ago when Mom died.   I never know when I’ll have a bad day, I never know how it will hit me, but it’s been incredibly exhausting.    When I started Pilates, Carey became much more than a Pilates teacher.    She’s a friend, and it was her idea that I should start Farm Girl Marketing Solutions, my retirement business that has already given me so much more than the cash it brings in.   I started working with a health coach who gives me assignments to work on weekly.   One of the things she’s encouraged me to formalize, is a practice of gratitude.   I write down what I’m grateful for, even if it’s as simple as the sun shining or a flower blooming.   I try to erase the memories of my dad’s hospitalization, by writing down memories of my dad that I’m grateful for.

It was during my gratitude process that I realized I was grateful for my tribe.  What is a tribe? A tribe is a small but powerful group of people.  It’s a fan base, a Bible study, a group of influencers.   A tribe is small enough to feel personal but large enough to make a difference.   A tribe is not usually created out of thin air.   More often than not, tribes are found.  They are existing groups of people formed around very specific interests and passions.

It’s not the same tribe I had 4 years ago.    My tribe of 4 years ago was full of coworkers, not necessarily friends in a world of politics and drama.  (handful of those people are still in my tribe, people I consider true friends).  My tribe of today is an amazing collection of people that believe in living positive, faith filled lives.  My tribe of today has only a couple of people I even knew 4 years ago.   There’s no room for haters, drama or politics in my tribe. My tribe of today is diverse and each person in it makes an amazing contribution to helping me live a positive life.   My tribe has come together because of all the things that I’ve been through in the past 4 years and the one feeling I’ve felt more than any other.   Grief.

An only child’s journey continues…

If you want to read more on why women need tribes, click here.

Posted in caregiver, dealing with grief | 1 Comment

Too many feelings and an empty chair!

I just looked back, and I haven’t blogged since August.   Starting a new business keeps me busy — and when I’ve been blogging — I’ve been blogging for the business.    When I retired many people asked me to keep blogging, and I’ve let it slide.   Why?    Cuz sometimes it’s easier not to face the emotions.     Someone walked into my dad’s funeral in February — and said — “now you’re all alone”, then she quickly added an invitation to “join” their family.    Sometimes the all alone feelings hit me more than others, and this past two weeks was one of those times!   The new business has been a blessing, because most days it keeps me much too busy to think about my emotions.

toby_1980Mike and I took our annual trip to the National Finals Rodeo in Las Vegas.   We went for all 10 nights, and I never dreamed that I’d actually feel more lonesome for my Dad when I was in Las Vegas than I have for months.   He loved hearing about our rodeo adventures, and when we came home from Vegas full of stories, he would always end up telling Mike how he and Mom took me to Cheyenne Frontier Days when I was 10 or so, and we had to cut the trip short because all they heard from me was “I miss Toby”.   As an only child, Toby (my pony) was my my bestie!   We did everything together!

Even getting ready for vacation was different this year.    My friend Dawnell still came to house sit and take care of Misty, but I didn’t have to do a meal plan for my Dad, or get his medications ready.     During the rodeo they always have one of those “in memorium” presentations — and after losing my dad and my friend Julie this year, the moments were particularly poignant.    At the end of the music video — they released smoke (clouds) into the arena and some horses came into the arena.  I totally lost it.  I was sitting with friends that night, and i was right beside two people that i had met when I sat down for the rodeo — so I’m sure they were watching me wipe the tears off my face and wondering what was wrong with me!

In past years, we head to the rodeo about 5, and then hang out till the rodeo starts, and I always called my Dad to check in about 6pm Vegas time, that was just a while before his bed time in Iowa.    Little did I realize before I left for the rodeo, how much I would miss those phone calls.   I was sitting at the bar one night with Mike, and the tears started rolling down my cheeks.

img_4884Yesterday, coming home from the rodeo – it all started again.  My dad wasn’t at my house when we got home.   We were on our flight to Cedar Rapids, and I was trying to sleep, but all I could think about was my Dad’s empty chair.  (We’ve moved it around — but it doesn’t help.   It’s still empty).  Who knew that 10 months (to the day) after my Dad passed away — the grief would come back so strong.    Worse — I can still hear those awful words he said when he was in so much pain in the hospital.   They play over and over in my head.   I read an article yesterday whose first point was “be prepared for intense emotions.”     I’m trying.   Meanwhile, the days are pretty long right now.

An only child’s journey continues……

 

 

 

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A flood of memories

Many moons ago, when we lived in the house surrounded by evergreen trees I remember sitting in the kitchen (with the olive green cabinets)  with my mom and my Dad came home from the sale barn.   He said, you know, there’s someone down the road that would really like to meet you and ride ponies with you.   He had run into Albin Dvorak at the sale barn, and said that he had a daughter about the same age as me, and maybe we could ride ponies together.    I don’t remember how we actually met, but I’m guessing it involved loading Toby in the back of the pickup, and taking him the 2 miles down the road so Julie and I could ride our ponies.     Yes, that was before we had a horse trailer (and before we had a horse).   My dad backed the pickup up to the corncrib alley and Toby had to jump in. That was the only ride Toby every got down that road.   From then on, we rode Toby and Brownie up and down the gravel road, from our house to the Dvorak house, and back again — and despite the fact that those ponies had really short legs, they were darn good transportation.   We thought we were trick riders sometimes — so we practiced changing ponies when we were riding, first walking, then trotting, and even occasionally riding backwards, and then switching ponies backwards.   We could stand on our ponies and ride, but we didn’t do that where anyone could see us.

When my Dad started renting the creek pasture from Wilson for our cows – that gave us another place to ride.    We watched the cows cross the creek and decided we could too — and more than once we pretended we were on Gunsmoke and raced from one side of the creek to the other as fast as our ponies would take us.   (usually bareback, and wearing shorts and tennis shoes.)   As our legs got longer, my Dad bought me Trixie, and Julie’s Dad bought her horse Sugar.   Our routine was the same.    Most every summer day (as long as I had practiced the piano first) — we would meet at the little bridge that we had decided was half way between our houses, and decide where we went from there.  We had an arena at my house (behind the buildings).    We had barrels, poles, and sometimes a jumping course.    These were not exactly the jumps we just saw on the olympics.    We had barrels, 5 gallon buckets, bales (both square and round) and a board that we had found somewhere.   Clearly, we didn’t know that people sometimes break their neck jumping over things.    We jumped bareback and with our western saddles, helmets weren’t invented yet.    I think the tallest we jumped was a board across a 5 gallon bucket on top of one of my barrels.    We weren’t just hopping around on 6 inch jumps!    Sugar loved to jump — and the little creek in the Wilson pasture was way fun to jump, and gave both of us some horse training skills.   We could cue our horses to jump, just like we cued them to do any other crazy thing that one of us thought of.   Those were the beginning days of Yankee Riders Saddle Club, and we went on trail rides through what is now Hickory Hills park and Tama County lake a couple of times a month.   Once when we were leaving Tama County lake our pickup was having trouble making it up the hills with 4 horses in the trailer, so we stopped, Julie and I grabbed our bridles, grabbed our horses, and we rode to the gate of the park bareback and then loaded our horses back up.

Our lives went in different directions in high school.   When Lon got his drivers license, Julie was generally with him, and I was in a different high school and involved in school activities.   After high school, Julie and Lon got married, and started their family, and I went on to college. It was always family and being near family  that was the most important to her.  I have always admired her for knowing what things were important to her happiness.   Lon, the kids, and the critters on the farm.    It wasn’t always easy.   I remember going to the State Fair with them one year and somehow in the line to see the Butter Cow we lost Willis.   (hard to imagine if you know him now).    Mother Bear Julie came out instantly, and in a few minutes we had found Will and all the kids had gotten a lecture on what to do if they got separated from us.    Later in the day, Nicole and I had stopped to watch some horses, and everyone else kept walking, and she stopped in the middle of the street.   “Mom, said we’re supposed to stand still until they see us.”  Julie taught us all lessons in life.

Skip ahead about 30 years, and I had moved to Tennessee, New York, Cleveland, and back, and my parents were starting to have health problems.  That’s when I started blogging, and somehow Julie found those blogs and came back into my life.  I saw her for the first time in years at my Mom’s funeral – she came up behind me gave me a hug, and said “Don’t worry, we’re here.”   Then I went into caregiver mode for my dad, knowing that she’d be there for me if I needed her.  I found out she had been diagnosed with Cancer from her sister after I saw a weird reference on Facebook, and then again — I learned to prioritize the important things in my life by watching Julie.    She fought the Cancer with all she had, but she didn’t complain, and she didn’t show fear.  Her faith was strong.  I’m not saying she wasn’t sad.   She hated knowing that she wouldn’t see her grandkids grow to adults so she taught them what she could in the time they had together.

Some time during her fight with cancer, she started ending every conversation with “I love you” instead of “goodbye”.  Another lesson from Julie.  Say it when you can, and make sure people know that you love them.    What I didn’t know at the time, was that I would still be able to hear her saying it after she left us.  I can close my eyes and hear it now.    I hope her kids and grandkids can too!

IMG_2253Last fall we stopped at the farm after my Dad had an appointment in Waterloo, because Julie wanted to show us her pony.     The doctors had told her she couldn’t ride anymore after the radiation, but she thought she could hitch the pony to the cart and drive around. She brought the pony out to show us — and this picture is when she was talking to my Dad, and he said something that made her laugh.    She says it was a coincidence that this pony (Honey) had the same coloring as her 1st horse Sugar did — but I’m just not sure.  I think it was her way of trying to transfer her love of horses to her grandchildren.

We had a conversation about what was important in life a few months ago, and we were talking about how we had learned that people were the important things in life and that “things” didn’t mean much.     Julie had learned it thru the struggles of farming and raising a family, and I had learned it one Christmas when my Dad got violently ill right before Christmas.   We believed in family, and she told me that since my parents were gone, I should consider her family mine.    She made sure that I had a place to go on Easter and Mothers Day and Fathers Day after my dad passed away.    She made me promise to stay family when she was gone.  I spent my birthday there, because I knew it was the last chance I would have to spend my birthday with her — and in the afternoon — she made sure I had an impromptu party!

I was in Orlando and I called to check on her, and she had decided we were saying what we need to say that day.  That was the hardest conversation ever.   Not hard because I didn’t know what to say — Julie and I never had a hard time talking —  but hard because Julie and I were both going from tears to laughter to tears.  We both knew that we wouldn’t have that many more conversations.  She said, I’m sorry, I might make you cry, and I might cry too but we need to say these things.  It was June and it was when she decided that she couldn’t do any more chemo.   We cried.   We laughed.   We said I love you.  We talked about my blog that I had written after her doctor appointment the week before. I had been taking time off from work to sit with her at her appointments at the University, but my retirement gave me more freedom to go to Clutier to the farm and help out.    I am so thankful for the time we have spent together recently.  About a month ago, I went in to her bedroom to hang out with her and she said — “You probably think I’m lame for laying in bed.” I told her that there would be a day I would sit at her bedside, but that was not the day.    For that day, I told her to sleep and get the rest her body craved.

I sat by her bedside on Tuesday.   The ability to speak had been taken away, but I sat, and I talked with her.  I held her hand and cursed Cancer, because it had taken away her physical strength, but she still held her Rosary.   Every now and then, I’d ask her a question, and I’d see her eyes dart toward me so I would know that she understood.   She knew every time that Lon came in the room, and I know she could see how hard it was for him.  I could feel her worry for him as I sat with her.   She hung on, until after evening milking, when all her kids had come back in the house.   She left us on her terms, at home on the farm she loved with her husband and five children in the room with her.   She fought cancer for 22 months, and spent maybe 4 days in the hospital.    Her strength gave her family strength, even thru those last hours.

I love you Julie.   I will miss you, but I’m guessing God needed some help teaching other people the lessons you taught us.

An only child’s journey continues……

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Best Birthday in a long time!

IMG_3837Just three years ago — i wrote a blog entitled It’s my birthday and I’ll cry if I want to, and today — 3 years later — I’ve had my best birthday in a long time which is weird, because I am sitting here alone in my living room with Misty — and I’m smiling so big my cheeks hurt.   I don’t even know how to explain it, because it wasn’t really planned, it just sort of happened.

I retired from the VA last Thursday — so I’ve had a lot of firsts lately.    First day of retirement.   First holiday where I didn’t get paid.   Officially — that makes this day 3 (workday) of retirement.   Mike left this morning for a business trip.  I took him to the airport, and he was feeling like he shouldn’t leave on my birthday.   I tried to reassure him. I’m the one who booked the ticket, and it’s not a big deal for me if the cheapest airfare was only offered on my birthday.    I went to the airport and back, I went to Pilates and I went out to breakfast with a friend.     Great start to my birthday!

I had decided a few weeks ago what I wanted to do today.  I have a friend with Stage IV lung cancer, and she recently stopped doing chemo/radiation.   I wanted to spend my birthday with her.   I don’t know if I will have another chance to spend my birthday with her.   So after breakfast, I got in the car, and drove on up there.    I was a little nervous on the way up there, because I hadn’t seen her in about a month.   I had no idea how her disease had progressed in that month.  Then I figured out I wasn’t sure what to do when I got there.    Lucky for me — I had 50 miles in the car to figure it out.

I had all my gadgets with me, so i could easily spend the day working or playing games.   However, that wasn’t what I was going for, I wanted to be able to help out. Ok, that would probably be easier if I was a good cook or a good cleaner, or something besides a gadget nerd! So I thought about it.    When my Mom was so sick and we were taking care of her, my friend Kristin came and took care of us.   She did so many little things, and I’m way not as good at taking care of people as she is — but I decided to “channel” her and see if I could figure out how to be helpful.

My friend was up and having breakfast when I got there, but she said she was really tired. I asked her if there was something I could do, and she couldn’t think of anything.   So I channeled my friend Kristin again.    “Do you mind if I clean your refrigerator?”   The answer was funny as I think back on it.   At first she was nervous.   “What do you mean? ”   Then she back tracked, and said, do whatever you want, and I’ll lay down and rest for a bit. I helped her get to bed, and then I went to work on the refrigerator.

Did you ever clean someone else’s refrigerator?   And did you ever clean someone else’s refrigerator on your birthday?     I knew from when we lived thru cancer with my Mom, (before Kristin came to take care of us) that sometimes you skip over things.   You eat fast food, you eat easy food to fix, and you shove the leftovers in the frig, but many times the next day you forget what’s in there, so you fix something new, and more leftovers get shoved in the frig.   It gets deeper and deeper, and you may or may not find the things you shoved in the refrigerator days and weeks later.    I’ve been at the “observation” end of this.  I’ve watched Kristin pull stuff out of my frig, look at the date on the item, realize that the date on the item was before we moved into this house, and well, it’s really good to keep the garbage can close, because it ends up getting full.  I kept channeling Kristin, one refrigerator shelf at a time.

Just like the first time Kristin cleaned my refrigerator, once I was done cleaning — there was a bunch of extra room in the refrigerator.  I also channeled Kristin when I was organizing shelves and storage.   1st shelf dairy.   2nd shelf leftovers.    3rd shelf tall stuff.   1 drawer for meat and cheese — oops — nothing left to put in the other drawer.    (I may have to talk to them about vegetables!)

I had sent a message to Mike part way thru — and he made some remark about cleaning a refrigerator seemed like work you wouldn’t do on your birthday.   Someone else sent me a similar message.   The fact is — I felt useful.    I did something for this family that they didn’t have time to do.   It’s my birthday and I’ll clean a refrigerator if I want to!

An only child’s journey continues………#theadventuresofBecky

 

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Endings are Hard

This blog is double published, on both my work blog (my last blog as today is retirement day) — and my personal blog.

Last week, in #OnlyChildsJourney Enough is Enough, I blogged about knowing when it was time to call everything off.    Time to pass in the songbooks as the announcer used to say on the radio at Hawkeye games.  Knowing when it was time to pass in those books on my VA career seems to be the easy part of my decision.   Saying goodbye, well that’s a little harder.

I am totally grateful to have had a career at the Veterans Administration.  I’ve lived in 4 different states during my VA career, I’ve had opportunities that I couldn’t have ever predicted, and I’ve met some amazing people.   Those people have touched my life in so many incredible ways.    It hasn’t always been easy, and it hasn’t always been positive.   I’ve learned so much.   There’s a church out in the country near some tiny town in northeast Iowa that we drive by on the way to Minneapolis.    Every time I drive by that church, I remember one of my favorite patients from my days as a clinic clerk.    His name was Loren and he was fighting cancer.   I checked him in for oncology appointments, chemo appointments and radiation therapy, and I watched his declining health.   I moved on to another job, and I never exactly how things ended for him, but when I drive by that church I still remember his smile. I was lucky that my supervisor gave me the chance to learn VA File Manager — a database program. Turns out I had a knack for that, and since I also had a knack for talking, my career as a trainer was born.

13 years later I was in the right place at the right time and the development team for CPRS asked me if I would help as they prepared to roll out physician order entry.   As I started down the CPRS Training road I had no idea the opportunities, rewards or the costs of that decision.    One of the most exciting things I ever did was lead a training class of clinical staff in West Palm Beach, knowing that some of the developers had worked all night since the previous day’s class.   They were fixing errors, they were changing functionality based on feedback, and they were in the back of the room watching.     I remember looking at them occasionally while I was talking with an “is this safe to tell the people to do” kind of look.   I could tell by their faces when they were confident, and when I needed to adjust the training plan!   In Central Texas a physician left the room in tears, after accusing me of trying to turn her into a clerk.    Yep — there weren’t a lot of dull moments back then.    There was also a lot of airplanes, a lot of hotel rooms, and not a lot of time for my friends and family at home.

That all evolved into conferences and the conferences grew bigger and bigger and what started out as Camp CPRS, became VA eHealth University, and finally MyVeHU Campus.  Thanks to those original OE/RR developers, the training we were doing always started with what the users needed.    At the time I didn’t know how rare that was.   We weren’t pushing out priorities from Central Office to the field, we were asking the field what they needed to know to do their work, and then we’d meet with the developers and the support teams and try to figure out how to help those field staff.   After every training or every conference, we’d gather attendees together by role (Providers, Nurses, Pharmacists, HIM and Clinical Informatics Support) and we’d ask them — what worked, what didn’t and how we could improve.    We then asked them what training they wanted that they didn’t get, and that was our agenda to work from for the next conference.   When face-to-face conferences were ruled out for budget reasons, we figured out away to present virtually, and that opened so many options for training.  For every opportunity, I am grateful.

I can’t start naming names of all the people I’d like to thank in VA because, there are too many names.   30 years is a lot of meeting people.   I truly appreciate the people that have influenced me and gave me opportunities to think outside the traditional VA box.  For everyone who participated in Camp CPRS and VeHU (and that includes speakers, planners, attendees, our vendor partners, and my family, who understood the commitment to manage a successful conference) – I thank you!

nutsTo my Training Strategy team (Sonya, Dawnell, Donna K, John, Kimberly, Kris, Harold and HeeJung)- it has been an honor to pursue the mission of virtual training with you, and even though I have watched you grow and learn, every single day your talent amazes me.  Whenever something needs to be done, you circle the wagons, make a plan, and make it happen.   There is no training project that the VA can throw at you that you can’t accomplish — and accomplish with engaging training  (no talking heads reading slides!) Keep doing that.    VHA needs you.

Saying goodbye is hard.  There doesn’t seem to be the pomp and circumstance with retirement that I imagined there would be.  I always imagined the Secretary would want to shake my hand or give me a hug on retirement day.    That’s not going to happen.  Part of that is because I work virtually.  I have to pack up my VA equipment and send it back myself – movers aren’t coming in to do it for me.    You can’t have the party with the retirement cake from the canteen, when everyone you work with lives in a different state.   So this afternoon, wherever you are, I hope you’ll have a glass of iced tea and a cupcake to celebrate my retirement.   That’s what I’m going to do.

Here are a few pictures that I showed our team the other day, I thought I would share them with everyone.  My first priority is to prove I am retiring from the VA, not from life.
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I am very grateful for my VA career — I have the opportunity to meet leadership t hat I never would have probably run into if it wasn’t for Camp CPRS and VeHU!  Here’s some of my favorite memories.    For those of you who were there in 2003, I don’t have a picture of us doing CPRS to the tune of YMCA.    That would have to be an all time favorite!

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To the team I work with now, and to the team of Track Directors for our face to face conference days — thank you — every one of you taught me something!

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Most of all, it’s been an Honor to serve our Veterans, and it’s been my privilege to get help some of them share there message in VA eHealth University, and MyVeHU Campus.   When we did the session in MyVeHU Campus with Dr. Jesse and Josh, Josh might have given me the most unexpected answer to an interview question ever, when I asked him why he joined the army.     He said he wanted to paint his face green, eat bugs, and kill people.  His session taught me so much about the “little things” that we could do in VA medical centers to make visiting the VA easier for our Veterans.

irishFor my friends at VA, especially all the VeHU Track Directors and planning committees that have become my extended family — if you’re ever in Iowa — let us know.   You can always reach me via social media or at beckyjmonroe@hotmail.com.   I will likely keep blogging, and I’m not going to change the name of the blog, but I will have a new hashtag!   #adventuresofBecky  HUGS.

 

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When do say, enough is enough?

I sat down to write a blog for work this morning, and weirdly enough, the blog I want to write for #Onlychildsjourmey and the one I write for work will be very much the same.

Yesterday I was with a friend at the hospital.   She had some appointments and she was struggling.    She’s been fighting the cancer for nearly two years, and when she was first diagnosed, the first physician she saw had given her a dismal prognosis:   his thought was the disease was already so active that it would take her life before Christmas of 2014.   She got a different physician. She’s been thru radiation and chemotherapy, blood tests and more CTs and MRIs and she is tired.

questionLast months treatment was different.  It was chemo – and in the infusion center, the nurse said there were a lot of patients on that drug and that it was a “good one”.  What I know abut that drug, is that in the strength they were giving it to my friend, she’s gone from her “2015-2016- normal” to eating like a hummingbird and sleeping 18-20 hours per day.   Still she struggles. Is it time to say enough is enough?  She asked me yesterday, “is it time to stop?”

My answer?   “If you are still asking the question, it’s not time to stop.”

caseyMy dog Casey had cancer, and I was one of “those people” who drove 2.5 hours to the veterinary college to get her treatment.  2 surgeries, $5000 and almost 3 years later, she had grown another subcutaneous sarcoma.  I knew that if we cut it off, another tumor would come, and they were starting to come closer together. All I could do was love her till her time came.  Right before Christmas she started having seizures. I knew her time was close.   My Mom called, and said why don’t both of you come to our house.  I said I couldn’t, because I knew when I left that Casey wasn’t coming back with me.  Mom and Dad came back to our house.   For the first night in her life, Casey didn’t want to go upstairs to sleep on the bed.    We both slept on the floor of the living room. The next day, I just knew.    It was time to take her to the vet and stop her pain.  Mom and Dad drove us to the vet, and I cried every minute of the 75 mile drive. Casey sat on my lap and licked my tears the whole way.

Strangely enough, it was the same kind of feeling 4 months ago when my Dad was n the hospital.  He had been up and down and some days he had told me to pull the plug. There wasn’t a plug to pull.  We were making plans to bring him home,and have home health help us.  I left the hospital for the first time in 3 days on a Wednesday eveningOn Thursday morning, my dad woke up and he was doing his arm exercises in bed (without being asked).  An hour later Mike called and told me to hurry, that my dad had had an “episode”.  I got there, we spent the day, and my dad napped and talked to us.  He woke up from a nap in the late afternoon, and he said that he really wanted to die.  He wasn’t really talking to me, it was more one of those thoughts that you are having when you wake up, and you say it to yourself.  I don’t even know for sure that he knew we were in the room.   Suddenly I knew.  It was time.

I didn’t think about what it meant for him, or what it meant for me.    We paged the MD.  I was now my dad’s advocate, more than I was his daughter.  I said that he wanted to be switched to comfort care only.  They asked some questions about the meds and the oxygen, and I was in advocate mode.    Unhook the antibiotics.    Leave the oxygen because I don’t want him to struggle.   For Gods sake give him some pain meds.  The respiratory therapist took me aside to tell me that the oxygen could sometimes be life support.   (He was on 10 liters).  We decided to take it down a little every hour, after he had some morphine.  My dad seemed to know exactly what he wanted, but I think inside he was still scared.   His heart rate was all over the place, and at one point his defibrillator actually went off.  I didn’t get emotional until he was resting comfortably.    I don’t know how I knew that it was time – I just knew.

Oddly enough, the same is true for my VA career.  I have worked for the VA for over 30 years, and I had planned to work a couple of more years. However, suddenly I knew.  It’s been a tumultuous year, and once again I had been “stabbed in the back” by someone I considered a friend. The election is coming up, and that will mean that appointees In VA will change, and we will start the cycle of reorganizations and determining priorities all over again. 6 years ago I changed jobs, and apparently my previous supervisor took offense. It’s been like a bad divorce ever since.  People say things like “there is history” as if that explains an organizations reluctance to move forward or an inability to listen to one person’s voice. I had worked thru budget issues before, when we moved from a face to face training standard to virtual training. Virtual training was the biggest challenge of my career and I loved it.  The possibilities were unlimited.   We could do anything.  Then out pops budget issues, back stabbing and more “history”.  And then I knew.   It was time.

I read somewhere that only after you reach the top of one mountain, can you see the goals you might set for yourself for the next climb.   I totally agree.   I had goals that I achieved for VA and I made a difference. I have done what I set out to do in VA.  It’s time.  Mike, Misty and my garden are at the top of my list.  Some friendships that I had pushed below work on my priority list are also priorities for me as I enter a new phase of my life.   When you have had enough, when it’s time to say, no more, there will be no more questions In your heart or your head.  Enough is simply, enough.

Posted in caregiver, stress | 12 Comments

Hard Decisions

IMG_0237After 17 days in the hospital, there are so many blogs running through my head that I can’t even get my words straight in my head.   Broken ribs, the most god-awful catheter that I have ever heard of, getting the flu, the “shaker”, wanting to punch out a hospitalist and a nurse, thoracentesis, blood clots, out of control glucose and short bus dude, to name a few.  17 days ran together in a blur of driving to the hospital, trying to track everything going on with my Dad and trying to figure out what the next day would bring.  As you saw in my last post about the emergency room, I learned many things in those 17 days and I will write those blogs because I think my lessons can save others stress and worry.  But I need to go out of order, and write the hardest blog tonight.

Yesterday was a hard day.   I didn’t make a lot of phone calls, it was just too hard.   However, last night my phone rang and someone asked how my Dad was.   She wasn’t prepared for my answer, thus, I need to write this blog to catch everyone up on the last week.

IMG_2823It’s Saturday evening now.  One week ago today, things started out ok.   My dad was up and in the chair when we got to the hospital and they said he had walked over there with the walker.   Things got a bit hairy in the afternoon (I will write more about that later), but he was sleeping quietly when we went home to get some sleep.   On Sunday, things were shaky.   Really shaky.   So shaky that we said our goodbyes.   So shaky that we met with Hospice that night about palliative care.   So shaky that I didn’t feel like I could go home that night.   I slept (or more accurately tried to sleep) in the recliner.  On Monday, the doctor came in, and my Dad was clearly better.   He was speaking clearly, he was alert and his labs were better.  For the most part, the next few days were full of little ups and downs.  I didn’t leave the hospital till Wednesday, when things were relatively stable.

Mike and I switched places on Wednesday afternoon.    He stayed with my Dad, and I came home. I checked in with Mike on Thursday morning, and he said they’d had a good night, and my Dad was doing his arm exercises without being asked by a therapist.    Sometime after that, things went south.   All of a sudden my Dad couldn’t catch his breath. They got things under control, and when I got there, things were stable and the only thin different was that my Dad was wearing a bigger mask for his oxygen that covered his mouth.   The doctor came in and asked “Stay the course or move to comfort care?”.   We talked.   He said we didn’t know if this was a hiccup or something bigger.     We decided to stay the course.  My Dad mostly napped on Thursday, and at one point, he woke up and said he was feeling pretty good.   He went back to sleep and the next time he woke up, he said he did not feel “worth a damn”.

He hated the mask on his face.    He hated being confined to the bed.   He wanted to be (in his words) “unplugged”.    He kept saying “pull the plug”.  He had trouble getting his breath again.  His pulse was up to 180s and 190s.    His defibrillator shocked him.    The nurse paged the doctor.    The doctor came into the room, and my Dad was firm in his resolve.   “Pull the Plug”.   The doctor looked confused — because there wasn’t really a plug to pull.   I said – “comfort care only”.   We had some discussion of what that meant (unplugging the antibiotics, discontinuing the heparin he was taking for clotting, what meds he could have.   It took about 90 minutes to get him comfortable, as the doctor had to put in orders for meds and we started right when the nurses were changing shifts.  He told me to take care of the dog.  I told him I loved him. I held his hand, or rather he held mine until the meds started to work.   Mike was on the other side of the bed, holding his other hand.

We catnapped thru the night as we watched him sleep.    About 4am he was restless.   He was trying to get out of bed.   The nurses came in and repositioned him, and suddenly he was quiet without getting any more meds.   He passed away peacefully about an hour later. Rest in peace Daddy.    An only child’s journey continues…..

 

Posted in caregiver, Dad, eldercare, health care, stress | 17 Comments

Bad Caregiver?

There is nothing like a call to 911 and a morning in the Emergency Room to get extremely humbled about your caregiving skills.     It started early on February 2.

I knew I needed to call 911, and I knew they’d ask about what meds my Dad was on.  I have an app on my phone to track this, because there are always tweaks and fixes — and you never know who might ask about meds — right?    The app i have has you take pictures of the bottles when you bring them home from the pharmacy – and then it keeps lists.    I thought I was pretty darn cool — so I picked up my phone, and went to print out the list.    I found that the last time I brought home refills, I had scanned them, but i hadn’t gone in and confirmed everything.   So I had double meds listed.   I tried to hurry and correct them.  I printed them and had them handy for the paramedics.    (I didn’t do a double check.   oops).

I wrote a blog a couple of years ago — about how you should always get copies of your health records, and have them with you just in case.   Sometimes this is easier than others. If the hospital has a personal health record, generally you can just sign into that.   If the hospital has electronic records, you can sign a release and send (or walk)  it to Release of Information.   However, if the provider isn’t electronic — then you have to make another plan.   Here we were, at the emergency room seeing providers that we had never seen – and I didn’t have any information with me.   They decided to admit my Dad, and the hospitalist came in to talk with us and he wanted to know some historical creatinine levels and previous chest x-ray reports.   I have written blogs before about how much I trust my Dad’s providers — but they are 70 miles away.   So here I was in an ER, unable to answer questions and both their offices were closed because of weather conditions.  I was kicking myself.

I remembered that I had signed up for a personal health record from my dad’s cardiologist so I could track his appointments.   DUH.   So I find the app on my ipad, I try to sign in and sure enough — I didn’t know the password.    10 minutes later, with my password reset – I was in.   I try to find recent labs.    We were last to the Primary Care doc in September and the cardiologist in July.    OH MY! The most recent labs in the personal health record were 2014.   I knew we had labs since – but they must have been ordered by Primary Care, who doesn’t have an electronic record or a personal record, so I don’t have any recent tests, and the offices were closed so there was no one to call.    Bad caregiver moment — I had talked to the office the day before to see if they had advice.    They had told me I would likely have to bring him to Waterloo (but they had already cancelled patients the next day for the blizzard) or choose to bring him to a hospital closer.   I could have asked them to fax/email or read me some recent labs — but I didn’t think of it.

IMG_2823When we finally got to the inpatient unit, the first step was that the nurse had to do a “skin check” on my dad. (her words).   She asked me if I’d like to step out, and I told her I could sit and play with my iPad and not watch.    She hemmed and hawed — and finally I figured out she wanted me to leave.    As I walked out the door, I thought they were probably checking for elder abuse, or signs of abuse.   And he’s got a broken rib.   uh oh — once again I’m thinking that everyone is judging me as a caregiver. 

The nurse had to do a complete health history.   The computer had a lot of rules for this health history — and the nurse finally figured out she should tell me how she wanted the answer before she asked the question.    Some things she wanted to know how old he was when he was diagnosed with that.   like i even know when they determined he was diabetic…..  Some things she wanted to know the year they happened.   Lots of this stuff happened before I became the caregiver — so I was guessing.    I had some new milestones to try and guess the years.   Before they left the farm.    Before my mom quit teaching.    Why didn’t I think of having all this written down before I got into a situation where I couldn’t think straight?

The complete health history included going over his medications.   I thought I had that handled when I printed out the list from my phone.   WRONG again!    The doctor tweaks the glipizide (diabetic meds) when we go to the doc depending on his sugars.     We were giving 1.5 tablets in the morning, 1 tablet at noon, and .5 tablet at night.     That’s not what the bottle said — so we had a conflict, and the nurse was looking at me like I was confused. Holy smokes — I thought I was being a responsible caregiver — and now it looked like I can’t get anything right.    No more thinking that I was a great caregiver — apparently there were a lot of things I missed!

An only child’s journey continues…..

 

 

 

 

 

 

 

Posted in caregiver, Dad | 5 Comments

It was a Murray-ism kind of day….

Tuesday. February 2.  (and for those of you who get this post twice — it’s because I didn’t know what month it is!)    For those of you that don’t know my dad, he goes by his middle name Murray.   And while today was, well quite frankly,  it was a shitty day, there were some classic Murray-isms that will amuse people who know him.

It didn’t start out well.   Frankly, it started out pretty bad.   Misty woke me up to take her outside, and after I let her out, I stopped in my Dad’s room to see how he was.  This was about 6:45 am.   I had just been up with him at 4:30 (and 2:45 and 12:30) to help him walk to the bathroom).   When I walked in the bedroom, the covers were off the edge of the bed.   He was not wearing his oxygen.  He was more horizontal on the bed than vertical, and his legs were hanging off the bed from the knees down.   This from someone who wanted us to turn on his electric blanket about 30 minutes before his “bedtime” until about a month ago.   

I asked him if he was awake, and he said he was.  I put his oxygen back on him.  He said he wanted to go to the bathroom, but when I tried to help him up (as I had been doing all weekend), he was not able to help at all.   He got his head a couple inches off the pillow, and he said he needed to rest.   I gave him 10 minutes.    Went back in.   Asked him if he wanted to get up.    He said, “nope.”   I told him if he couldn’t get out of the bed to go to the bathroom, he’d have to go to the hospital.   He said ok, cuz it would be good to “get the hell out of here”.   I knew he didn’t meean it, so I asked the same thing about 5 minutes later.   Again, he said, “Yes, I want to go to the hospital”.    I told him I’d call the ambulance in about 15 minutes.    He said ok.    I called a physician I knew for advice.    He told me he couldn’t take on any new patients, but not to worry about the hospitalists at Mercy.   He recommended I call 911.

Took me 3 laps around the kitchen island before I could call.    I dialed.   A woman answered.   “What is the nature of your emergency?”.    I explained that I didn’t think it was a lights and sirens emergency, but my 92 yo dad was in bed, and he had fallen recently, and somehow today he did not have the strength to get out of bed.   She said, “Is he breathing?” I must have been more upset than I thought.    Surely I could tell her what she needed to know.  I have worked in a health care system for 30 years, I should be able to do this.

We got to the ER and all my dad wanted was a drink of ice water.     They wouldn’t give him any until they had decided what to do with him.    At one point I asked him if he’d be ok if I went to get a soda.   He told me I could only go if I would sneak him a drink.    THis was after he tried to get the tech to sneak him some ice wataer.   As I was coming back with my Diet Mt Dew, the doctor found me, and said that it looked like my dad had pneumonia and they’d like to admit him for a few days, to get him IV antibiotics and respiratory treatments.    Maybe it was because I was tired, maybe because we had a long weekend – but it took me a little while to process it.   I had to ask — “so is he going to get better?”   The doc said we could never be sure, but he thought so.

When I got back, respiratory therapy was there doing a nebulizer, and you could see my Dad’s breathing get easier after that.   Then he started getting feisty with people.

A few minutes later — I remembered that the doc hadn’t mentioned anything about the rib that we thought might be broken from his fall.  I went out to ask — and he said, “the radiologist missed it — but it’s definitely fractured.”  To be fair — the request for the x-ray probably said something like rule out pneumonia so that’s all he looked for.

The hospitalist came in and asked the standard questions.   Who’s the president?   What’s the date?    Where are you?   I won’t tell you his answers — but I can tell you that his answer to the president question was not politically correct.    I keep trying to get them to ask Hawkeye questions — I think he could name every player by number on the basketball team!    He finds out the date by reading the newspaper, and he hadn’t read the paper yet.  When he got to the where are you question, my Dad told him “I’m right here beside you.”

We got up to the hospital room, and met with the nurse, and of course we had to go over his health history.   It was crazy for me — because sometimes they wanted to know the year it was diagnosed or the year it happened, sometimes they wanted to know how many years as he lived with this, and sometimes they wanted to know how old he was when it happened.    What seems like simple math — is not so simple on 2 hours of sleep.    When they got to surgeries — I thought we were done, and then I remembered his thumb accident, so I said something about the missing thumb — and the nurse said she hadn’t noticed that.    A few minutes later she asked my Dad if she could get one of his fingers on that hand for a glucose stick, and he told her she could take it from his thumb.   🙂

He’ll be admitted for a few days (at least) so we’ll take it one day at a time.    An only child’s journey continues…….

 

 

 

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Close the damn book!

On Wednesday about 5 am, I heard a large thud, and my dad yelling “OWWWWW”.   I grabbed my glasses and was out of bed pretty fast, and I found him sitting in his room looking sheepish.  “I missed the bed.”

He wasn’t even close to the bed.   I’m guessing he was half asleep when he went to the bathroom, and just didn’t get back to the bed for some reason.    He wasn’t all that close to the bed (he wasn’t just an inch or so off).   I got him back into bed, and while he knew he was going to be sore, everything seemed pretty ordinary.

IMG_2809When he woke up again about 7 am he asked for help getting to the bathroom.  I could tell he was scared to walk by himself.  When I was helping him out of bed, I found some dried blood on his sheets.   We looked around and found that both of his elbows were skinned in the fall.    I was walking behind him on the way to the bathroom, and I put my hand on his side and felt a knot, then I lifted up his shirt and saw the bruise.  It was pretty much the size of my hand.  We got thru Wednesday with the help of some ibuprofen.

The problem is, that the pain keeps getting worse.  Getting up or moving around on the bed takes some core and leg strength, and every time he moves or stretches his right side, he has pain.  He refuses to go to the doctor, and when I look in his face and see the pain – I don’t have the strength to make him go.   I have never seen pain like this on his face.

This morning I was in their chatting, and I told him to get his mind set on going to the doctor next week.   There’s a snowstorm coming, so I’m not sure which day, and I’m also not sure how I’m going to get him into a car, and out of it.    Generally Mike and I do that together, and he can drop us off, go find a parking place, etc.   Mike’s at his house right now – so I’m on my own.      I’ve got a couple of days to figure it out.   But when I told my Dad we were going to see Dr. G, he told me that he didn’t need to go.   I told him that Dr. G’s office had called twice since we hadn’t been there in 3 months, and they wanted to see him.   He told me to tell Dr. G’s office to “close the damn book (chart) and tape it shut”.   I gave him a look, and he told me it wouldn’t do any good to go to the doctor, cause he wasn’t going to be around much longer.  I told him that I’d done a lot of research, and all I could find was that cracked or broken ribs are very painful and heal very slowly.    He said he was just grateful that he had me.

It’s been a tough Saturday morning, and I didn’t think any day would be worse than yesterday.   He hurts, and it’s so hard to watch.   An only child’s journey continues…

 

 

Posted in caregiver, Dad, eldercare, stress | 1 Comment