Phil, Noelle and myself -- Shelter in Place, Care-giving and Hospice

Life took a quick turn when we least expected it and we are doing our best to hang in here right now.

Since I last wrote in my blog, there as been a feeling of spiraling out of control.  Love and gratitude continue to keep us moving forward

We make sure the love surrounds Phil and that he is very aware of it.  Our little home is covered in love, greetings and hope.

Phil ended up going into the hospital again, since the big seizure I mentioned in my last blog that also put him into the hospital, there was a decline in the function of his left side.  What we thought was a reaction to a drug,  was a reaction with a complication of shingles over his eye and forehead.  It looked like a burn that had blistered really bad.  He was having severe headache, confusion and his face became very swollen.  Again another ambulance ride to the hospital.  Sheltering in place due to the covid virus complicated things.  We couldn't visit Phil in the hospital.  Noelle, my daughter stayed with me and a very long week proceeded.  I could talk to Phil over the phone, he was miserable and had a hard time understanding what was going on.

While in the hospital, Phil told the doctors he didn't want treatment for his cancer anymore.  Palliative care stepped in and hospice was the next step for us.  The choices for us were a nursing facility which I would not be able to visit Phil right now or home with hospice.  I knew all along that I wanted Phil at home anyway.  I was aware of the challenges because of Phil's size and lack of movement.  Noelle stepped right up and said she would stay with us and help.  Hospice comes in for a couple of visits a week, helps us keep Phil comfortable and is a peace in knowing there is someone at the end of the phone to help.

When Phil was released from the hospital, I felt scared and relieved all at once.  They did let me in for one visit on a Sunday to meet with Phil and the Palliative care team.  I also got to go into the hospital to help Phil get ready to leave.  He would leave the hospital in the ambulance and would have to be carried back into the apartment.   Noelle told me with passion that she wanted Phil to see the ocean again, the ambulance team agreed to take us, but Phil didn't feel well and wanted to hurry home.   He was excited to be out of hospital and into our bed.  We had been advised that a hospital bed could be brought into the home, but Phil really wanted to be in our bed.  At this point keeping Phil happy and content is my only concern.  

Let me say that Phil has been amazing during all of this.  His weakness in the left side was noticeable, and yet before his visit to the hospital he continued to try to take a walk each day.  It was very short in distance but it gave him a bit of feeling like he was getting exercise.  To watch him was heart breaking as I could see the pain it was causing.  After we got home from the hospital, he would manage to get the energy to walk a very short distance to the bathroom to have a bowel movement.  Besides that he never left bed.  We would try to move him to his recliner but he was too weak to get  back up from the seat of the chair, his legs would not lift him.  

We would sit him up on the side of our bed and he would eat from there on a tray.  

Noelle and I with the loving help of friends put bars around the toilet, a shower chair, a bed rail on our bed, and just keep trying to keep him moving.  We brought in a new recliner that would help him stand, but each day he became weaker and moving became impossible for him.  All the time while we have been locked at home because of the corona virus, friends and family made sure we had what we needed.  Thank you to my family, our friends and our family/friends for what they have done during this very difficult time for us.  I don't know how we would have made it without the love of others.  Our spirituality has also helped us as we have talked about anything and everything as we have been on our journey.  Prayer, love and support have been the guiding posts, not to mention gratitude to help get us through.  

After a few days at home, trying to go to the bathroom, he fell and we had to have the fire dept come and pick him. up.  Somehow I ended up with his head in my lap and I tried to calm him as we waited.  His leg would no longer hold him up.

I have to take a moment to talk about what Noelle is helping me do with caring for Phil.  We both sat down when Phil was about to be released from the hospital to talk it all over.  Stepping into the unknown was scary but we knew what we were going into was what we wanted to do.  We both said Phil would do it for us and we love this beautiful man more than words can say.  Noelle has been a trouper, she has been with us 24 hours a day and our care giving often goes from morning to morning.  I love you Noelle and I have seen what you have contributed to Phil's life.  Invaluable and commendable.  

After the Phil fell, we realized we had to bring the hospital bed in.  The fire dept had to come again to move him from our bed to the hospital bed.  Noelle and I carried the old bed downstairs to be thrown away and I moved the pad on the bed to the floor where I slept for a few nights while I waited for a cot to come.  The transition was hard and was made more difficult by the fact that Phil was too tall for the bed.  What happened next was quite horrible and distressing to all of us.  We tried to get another bed brought in, first one came and it was just a couple inches longer, it didn't seem worth Phil's energy which was now very low to move to it.  We tried to move to a bigger bed meant for a larger person.  The bed was in bad shape, squeaked and was horribly uncomfortable.  So Phil is still in a bed that is too small.  Noelle and I spend a great amount of time, moving him up in the bed and trying to keep his legs braced.  We had to end up weighing out if moving him was the right thing to do, it seemed our best option to leave him where he was. Noelle, Phil and I cried a few tears as all of this was going on

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Phil sleeps a good part of the time, his breathing can be erratic, he bounces from being very coherent to being very confused.  Each day we try to make it bearable for him.  He has had pain from the shingles that has been severe and hard to manage.  Uncomfortable in his body and miserable a good part of the time, Noelle and I do what we can to make it better.  He can no longer move his left side, can't sit up, Noelle and I now make sure he is fed, clean and he is being made as comfortable as possible.  There are days that he is restless, there are days he sleeps and there are moments of total love and compassion around our house.  We are tired, we are stressed and yet we love.....we are filled with what I will call the spirit of God.  It is the best description I can come up with for the strength that we come up with.  He no longer looks at his computer or phone.  I believe his eyes bother him from the shingles.  Cards, presents and love come everyday.....We read the cards, hang them on the wall and live for the small smiles that he gives out.  Every day, in his voice which is very quiet and we have to strain to hear, he tells us he loves us and thank you.  

Phil will celebrate his 45th birthday on June 28  

We all cry, sometimes I cry all night long.  All I know is this is where I'm suppose to be....I can't stand the thought of being without Phil in my life.  We have been together for 23 wonderful years and the last 4 years we have been together non stop except while he was in the hospital.  I try not to think what is coming and just live in the moment, but it is hard, esp when I can feel his energy depleting as the days go forward.

There are angels in our lives, and hospice has provided more.  Maria, Eli and Angie, you are very special people indeed.  Thank you to everyone who has been trying to make this a little easier.  I have not been working for almost a month to take care of Phil, and yet what we need seems to be there because the kindness of others.  I will pay forward all the kindness that has been shared with us.  The angels have taught me many things, but most of all they have taught me the importance of kindness.  

One day at a time.

One moment at a time.

Phil and I love the movie Up, I started making this computer Adventure book for us.  He has never seen it because he told me it would make him sad.  I will ask him again to watch it, if he wants to.  To me these are the most beautiful images that my eyes can take in...............
I asked if he wanted to watch the video, not only did he watch it, he wanted to watch it 3 times.