April 1, 2020 - June 30, 2020

It was the middle of COVID.  The boys were home from school and so was I.  We didn’t know when we would return.  Most everything was shut down.  There wasn’t much of a mood for celebration, and it was a Monday.  Our 18th anniversary was just another day 😢.

Throughout Anne’s recovery small things would happen that made me wonder if Anne was getting better.  Like when she woke up in hospital after being unresponsive and a high fever for several days.  Or when she finally could pee on her own when she first came home after using a catheter for months.  On April 10th Anne got her first period since her stroke a year earlier.  This surprised both of us. For me, I (briefly) wondered if this was a sign.  Anne never considered it as anything positive.  The most likely explanation was that her body was still recovering from the trauma of the stroke, but recovering is not the same as repairing.

Anne and I spoke very little about what was “next”.  I hadn’t fully accepted that Anne would never get better or the possibility that she could find the desire to continue living.  I researched many alternatives that might make life easier for Anne. I enlisted family members to help as well.  There was a powered arm and hand brace to assist with long-term muscle weakness OR partial paralysis.  Also looked at a handful of motorized standup wheelchairs.  I scheduled a salesperson to visit for a demonstration.  Anne tried out the chair and it worked as advertised to go from sitting to standing.  The bigger problem was that the unit was so large, especially from front to back.  It would never be able to navigate the house, from bedroom to kitchen, etc. without precise movements.  This unit was so large, transporting it to and from work would not be feasible, therefore we would need one for home and one for work.  However, the biggest obstacle was Anne moving and navigating the chair.  There was a simple joystick that could be placed on the left or right side.  Anne could not gently guide the joystick around.  Given her condition her movements were jerky and exaggerated.  These devices are truly amazing, but they weren’t a good fit for Anne.  After the salesperson left, Anne reminded me about her final directive.  The part about not being kept alive by machines.  She made her point 🙁.

I started this journal last year (April 2024) and as I write each month, I go through many of the pictures, videos and postings from 2019 and 2020.  There are several pictures and videos of Anne during her rehab.  Revisiting these is the most difficult part of this journal.  I see them in a completely different light five years later.  I see how much Anne was struggling and fighting. How unhappy she was.  She was so transformed after the stroke in so many ways.  It is upsetting to watch them now.  

At the end of the month Anne wanted to go to the Beach House so I planned the trip. Although we didn’t say it, we both knew this would likely be Anne’s last trip.  The trip was uneventful.  We relaxed and drank coffee in the morning and watched the sunrise and sunset.  I will always have wonderful memories of us at the beach house.

https://myomo.com/what-is-a-myopro-orthosis/

https://www.karmanhealthcare.com/product/xo-505-standing-wheelchair/

We had very crazy conversations during this period.  She asked about using a gun.  Of course there was no way she could physically take her own life that way and if I did it… well we’ve all seen this scenario on Law & Order.  I’d go to jail and who would be there for the boys.

Anne had a DNR. Anne has been eating as much regular food and drink since April.  If she choked or got pneumonia she didn’t want to be saved.  Neither would be pleasant and possibly painful, but it didn’t matter at this point.

The only plausible option was to stop eating.  This was similar to how Anne’s mother (Gran) passed.  Gran lived with us for about 10 years.  She was getting older and started to lose her short term memory.  She had a couple of mini strokes and it got to the point where we couldn’t take care of her.  Gran first went to a memory care facility for a few months but later transferred to a nursing care home.  This happens so often to our elderly.  Gran’s dementia became more aggressive and being alone, she started losing the will to go on.  Eventually she stopped eating, either by choice or because of dementia.  It didn’t take long before Gran became a shell of herself.  Her eyes became glassy and stared.  She lost weight and looked  like a skeleton.  At this stage she was kept alive by the morphin.  Eventually her body shut down and she passed.  This was the option we were faced with.

Anne said, “I just want to go to sleep and not wake up”.  Of course that wasn’t an option.  That would be inhumane and reserved only for death row inmates.  Crazy right?

Anne said, “I don’t want it to hurt”, I replied “I can’t promise that”.

Anne said, “I can’t do this alone”, I promised “You won’t”.

Anne said, “I want to be at home”, I promised “You will”.

I didn’t know what was next. I was drained and numb.  I cried when I could, but stayed busy with so many other things.  I had to come up with a plan soon.

The boys made Anne a cake for Mother’s Day.  Dallas got his Public Speaking Merit Badge (virtual).

We all went to the pool at the end of the month. I could carry Anne into the pool and wade around.  It was a little cool for her so we didn’t stay in long, but she enjoyed being outside and it was warm in the sun.  I took pictures of the boys and had them take pictures of Anne and I.  These would be the last pictures we took of Anne and our last family photos.

Anne got her hair done one last time with Megan.  She looked great.

Late Friday evening, the 5th of June, the hospice company told us Anne had been accepted into their hospice program and she could begin the next day, which would begin with a visit from one of their nurses.  Anne and I were quite surprised this news came so early but were also relieved.  We anticipated many more days of built up anxiety awaiting news or have to follow up with more requests for information.  Anne was impatient.  She wanted to tell the boys right away and begin “preparing” for what would be coming soon.  I was able to calm her down and convinced her we could tell the boys on Saturday.

I’ve said to myself that if I ever wrote a book about Anne’s story, I would title it, “Say Goodbye to Momma”.  Saturday would be the third time I would tell the boys to “Say Goodbye to Momma”.  The night of her stroke, the day before Easter when Anne wasn’t responding in the Denver Hospital and now, when Anne was entering hospice.  These memories are so vivid.  I tear up whenever I think of those moments.  They are still the hardest part about losing Anne.  Having to tell the boys, knowing what they must be thinking and feeling.  That pain is still so raw.

About 10:30am Saturday morning I called the boys down to talk with us.  I started off by asking Dallas to talk about his thoughts about Momma the past few months.  I wanted the boys to recognize all the work and struggle Anne had been through since her stroke.  I transitioned to the symptoms that still plagued Anne and that the doctors did not believe she would ever get any better and that it was time for us to let her go.  I said that Momma was going to stop eating  and that eventually she would get weaker and finally die.  I would stop making dinner so we wouldn’t be eating in front of  Anne.  The boys could make TV dinners and eat in their rooms.  We all cried.  It will always be one of the most difficult talks I will ever have with the boys.  I didn’t realize it at the time, but our security camera was recording our talk.  A few days later I copied the videos off the camera.  There were several small video  files sinceIt wasn’t a continuous recording and there were quite a few gaps in between.  While preparing for this journal entry I finally pieced together those video files as best I could and watched it.  I wish it was complete but there was enough to capture the moment.

Anne didn’t want any visitors.  She didn’t want anyone to come see her.  This included her family. I didn’t agree with this.  I knew her family would want to be with her, but she was adamant about not seeing anyone. I believe she was afraid that she would break down emotionally if she saw her family and possibly change her mind about hospice, which she did not want to do. I understood what she was feeling and didn’t push back, but hoped to change her mind eventually.  I texted and emailed all her immediate family that Anne had entered hospice and that she intended to stop eating and conveyed her desire for privacy. Thankfully, within a week, I was able to convince Anne to allow visitors.

The hospice nurse came and examined Anne.  She would stop by weekly and evaluate Anne and report to the hospice doctor. Any medication Anne needed would be delivered to the house within two hours, anytime of the day.  The nurse told me what to expect in the coming days and weeks.  Anne hadn’t already stopped eating a few days earlier and was already beginning to have symptoms.  Our bodies can go for several weeks without food, however without water the body will deteriorate much faster.  The nurse requested morphine for Anne.

Anne started the morphine on Monday, June 8th.  Two days later, on the 10th, Anne received her last communion and the Anointing of the Sick.  It was also my birthday but we didn’t have a celebration.  Dalton did write me a nice birthday card that I will always cherish.  I was able to change Anne’s mind about having visitors.  Anne’s sister Elizabeth and niece Rachel would be renting a house close by in San Antonio and would visit and help out with Anne.  I very much appreciated the support and I’m sure Anne was comforted as well.  Cousin Suzy was coming out later in the month.

Anne’s daily routine was mundane.  She would sleep as much as possible.  We would sit quietly with her, sometimes talking but mostly quiet. She would drink very little and occasionally I would give her a hershey’s kiss.  Her morphine consumption was slowly increasing.  Anne started oxygen treatments on June 17th.  Other than some minor hunger pains, she was mostly comfortable.  Anxiety was a bigger issue, although she had medication helping with anxiety, in addition to the morphine.  Sadly this is how much of our elderly are treated as they age and are affected by dementia and like illnesses.  Anne wished she could just go to sleep and never wake up. I think it is possible that her brain injury caused paralysis from signals not making it from the brain to the body, maybe the body’s pain signals weren’t making it to the brain.   I can at least be thankful that in Anne’s case, she was not suffering or in terrible pain.

There wasn’t anything significant about Anne’s last day.  It was routine, like the others before it.  We were in bed early, but stayed awake very late.  We talked at times but not very much.  She pointed to the Faith and Hope crosses above our bed and said, “I guess faith and hope didn’t work out for us”.  I responded that at least we had another year together, although Anne might have a different perspective given the extraordinary pain and hardship she endured.  Anne passed about 3:30am.  I was holding her when she took her last breath.  I  laid next to her and cried for quite some time.  There were feelings of relief, regret, anger and outright numbness.  Our lives would be forever changed from this point forward.  Around 6:30am I got up and had the boys and Mary Jane have a last moment with Anne.  I called and notified the hospice company and within an hour the Funeral Home arrived and took Anne away.

Saying Goodbye

Today is June 30, 2025.  This is the final entry for this journal.  Just as in 2020, I have relived the past 14 and half months telling you Anne’s story.  

Thank you for following her story and all the support you have shown me in telling it.  

I hope Anne’s story can provide hope and inspiration for others.