Tuesday, November 11, 2014

Rest in Peace Dear Beverly

The past six months have been extremely difficult for our family.  Out of respect for Beverly's privacy, I haven't publicly talked about our struggles.  We have been caring for Beverly for the past three and a half years since her open heart surgery and stroke.  But miraculously, she recovered to a point that she could mostly take care of herself, live alone and even drive.  She still needed caregivers to come in the morning and we went to see her every night and cooked her meals for her.  But otherwise, she was relatively self sufficient.  That all changed earlier this year.

She started to struggle with her mobility more and we needed to pick up more of her tasks and care like getting her groceries, going to the library for her and getting her mail.  Things were just getting more difficult for her to do.  In the spring, a couple of things happened to make things even more difficult.  She developed ulcers on one of her heels and ankles and she was diagnosed with lung cancer.  Despite going to a wound specialty clinic, her ulcers just kept getting worse instead of better.  And because of her already frail condition, radiation was her only treatment option for her cancer.  Up to this point, she was still driving to her doctor appointments and church.  She was determined to stay as independent as possible for as long as she could even though it was painful to watch how difficult it was for her to do so.

Before she could even start her cancer treatment, she became severely ill in July.  She was in the hospital for a couple of weeks and did end up starting her radiation therapy while she was there.  But she was in no condition to return home.  She needed to go to a skilled nursing facility with the hope that she could go home.  She hated it there so that made things really hard for us all.  She pushed and pushed to get out even though she really wasn't ready.  I think she would have signed out against medical advice if the doctors hadn't signed for her to get out.  She was that unhappy there.  So despite my reservations, we took her home.

As it turned out, she really wasn't well enough to be home without a significant amount of help.  Her home care nurses, therapists and social workers as well as others tried to convince her that she needed to be in assisted living or some other living situation where she would have more supervision but she was dead set against it.  As any of us would want--she wanted to stay in her home.  So we did the best we could to keep her as safe as possible but were in constant worry that we would be called again for another fall and she was making a lot of unsafe decisions.  She was home for a month before she became severely ill again and would never return home again.  She needed to be discharged to a skilled nursing facility again--which she at first refused but fortunately we found a much nicer place with a private room and she was much happier there.  Less than a month later she was back in the hospital and it was obvious that she was close to the end of her days.  A heart condition and complications from her lung cancer lead to no more treatment options and end of life decisions needed to be made.

The last week of her life was a whirlwind at times and agonizingly slow at others.  After five days of trying to treat her pneumonia, congestive heart failure and tachycardia, we were given the news that tests showed that her tumor had grown to be very large--doubled the size in a month and it was a big tumor to begin with.  Her lung was collapsed.  None of the treatments helped her breathing difficulties.  She was miserable.  Tom was hoping to see her at Christmas.  He hadn't seen her in over two years and he was anxious to see her one last time.  We realized that if he didn't come now that he wasn't going to get a chance.  Fortunately his command allowed him to come home immediately.  Chuck also came right away.  We picked up Chris on Thursday night because she was desperate to see him before she started taking the steps toward dying.

We had great conversations with her those last few days.  She was totally with it and making all her own decisions up to the very last 24 hours.  She was visited by palliative care and hospice nurses and told that she could start refusing any treatments or medications that she didn't want to take anymore.  Tom and Chuck would crack jokes to keep her spirits up.  And we had an incredible nurse on day shift taking care of her the last three days that was just perfect.  We couldn't have asked for anyone better.  She kept us laughing as well and really looked out for us as a family that last day.  By Thursday afternoon, Beverly was ready to get on with it.  Bill went to Bellingham to pick Chris up on Thursday because the soonest he would get home by train or plane would have been on Friday.  She kept asking every half hour all afternoon and evening--"Where is Chris?" or "Where is Bill?"  She wanted to see them so badly. 

All five of us went to the hospital early Friday morning.  We saw the doctor and he wanted to move her to hospice house.  She had already been on comfort care measures for awhile and wasn't really showing any signs that she was going to die anytime soon.  And it is hospital policy that if you need comfort measures for more than 24 hours, you need to go home, hospice house or some other facility that is willing to do hospice.  She was refusing.  She didn't want to be moved.  And honestly, I think she was disappointed that she didn't die Thursday night.  When the doctor said she needed to move, she said "do I really need to go through this for another day?"  Fortunately the doctor said we could stay one more day and reevaluate Saturday morning.  And the hospice nurse was so helpful in talking Beverly into giving up her oxygen.  She was afraid to give it up because of how much she had needed it to stay alive.  But she wanted to die more so we gradually lowered her oxygen, started giving her medications every hour to help with her pain and discomfort, and totally took the oxygen away early Friday afternoon.  A few hours later, she was totally unresponsive.

Because she was sleeping so much and finally unconscious, we as a family had been completely silent all day Friday--so unlike the two days before when we were trying to keep spirits up.  We knew the time was near and were in our own thoughts and reflections.  Chris was so nervous and had a hard time with waiting and keeping still.  It was very difficult to sit there and wonder--when is it going to happen?  When is she going to stop breathing?  When is all her pain and suffering going to come to an end?  At one point, I tried playing some classical music on my phone but Pandora has commercial interruptions so the guys decided to turn it off.  At 8:00 p.m. that night, Chris took it upon himself to do something.  He pulled out Beverly's Bible that she kept at her side at all times those last few months.  He started reading the Book of John to her.  When he ran out of voice and steam, Chuck picked up the torch and continued reading.  Over the next two hours, all four guys took turns reading the entire Book of John to her as well as several Psalms and passages that were meaningful to her.  It really was a moving experience to me that Chris chose to hold her hand and read to her--something that she really would have enjoyed and I am hoping that she could hear them in her unconscious state and took joy in it.

At about midnight, the nurse told us that it could take all night for death to finally come.  Tom and I did go home to sleep for a few hours but Bill, Chuck and Chris wanted to remain at her side.  I went back to the hospital at 6 a.m.  We knew it was getting close but not how close so we decided we needed some breakfast and Bill, Tom and I went to pickup some bagels.  Chris and Chuck stayed with her.  While we were waiting for our food, Chris let us know that she had passed away while we were gone.  She had gotten her wish.  She died before she was asked to leave the hospital again.

We had a private family service at her church Monday morning so that the boys could go.  Suzanne, Gregory, and Suzanne's sister and brother-in-law flew up from California for just long enough to attend the service and have lunch before they returned home.  Unfortunately, Timothy lives in Boston and wasn't able to come.  It was good to have them here for the service and to go to the Grant House, Beverly's favorite restaurant in Vancouver, to have a lunch in her honor.  We had a long sharing time of our memories of her at church and continued at the restaurant.   

We are going to miss her.  She has been so much a part of our lives here in Vancouver.  We were so happy when she moved here so that we would have family nearby.  It was something that we had been missing up until the point that she came--especially for me having grown up with all my family nearby.  It was so wonderful for the boys to grow up being able to get to know her so well and have such a great relationship with her.  I look ahead to Thanksgiving and Christmas and wonder how we are going to celebrate this year.  We have always celebrated and cooked at her house.  We won't be doing that anymore.  But I also feel as if a huge weight has been lifted off my shoulders.  Being her caregiver all these years and especially these last six months has been so physically and emotionally draining.  So much time commitment to doctor appointments (usually two, three or more in a week), physically caring for her, and still trying to work full time.  Caring for her was becoming a full time job.  We are so happy she is no longer suffering.  It has been so difficult to watch her go downhill so quickly these last several years and months.

It was so nice to have both my boys home.  Tom left yesterday and Chris and Chuck left today.  I miss them all so much already.  Bill and I are alone again to try to figure out the next steps of clearing out her home, getting it ready to sell, etc.  It is a new transition in our lives but it will be okay.  Life does and must go on.

Rest in peace Beverly!

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