When Ray entered the hospital the final time we were told we needed to decide on hospice care. Up till this point he was determined to fight it. We looked into experimental treatments, his was too progressed, and also went for second opinions. It was all exhausting being told the same thing over and over.
He wanted to come home with hospice care and I was absolutely frightened. I didn't want to care for someone dying. Up to this point, aside from the visitors, I was his primary caregiver and I knew this was more than I could handle. I made this known and thought he should stay at the hospital. The family all decided that they would take shifts to care for him. I was still reluctant, but agreed because this is what he wanted.
We turned our master bedroom into a hospital room. Our master had never been used prior because we had slept in one of the bedrooms upstairs to be closer to the girls. My parents brought old carpet to put over our carpet since he had so many drainage tubes coming out of him and I didn't want to ruin anything. Our bed was disassembled and a hospital bed was delivered. We also moved the couch from our office into the bedroom for people to sit on in the room with him or to sleep on and a tv for him to watch.
The hospice nurse and social worker came in to explain what would happen. The nurse would come in to check vitals and as needed if we had an issue. The social worker brought the girl's books about dying. All I wanted was a timeline, what to expect, but that wasn't something anyone could tell us. It was up to his body and God.
When he came home from the hospital the girls bought Daddy some crazy daisies to put in the room. Every time I see those flowers at Kroger they still remind me of him and coming home to hospice. I had a very hard time having flowers around in the house for a very long time because they reminded me of sickness.
Ray was selective about who he wanted to see and when he wanted to see them. He had asked to see a few select friends and their family. People that he was closest to, even then he struggled. He didn't want them to see him like that.
The first bit he was home he would still come into the family room from time to time to sit. As time progressed he didn't leave his bed except to use the bathroom. That year he watched every single Detroit Tiger's game and had a weird obsession with TMZ. He would completely zone out during it and ask everyone to be quiet when it was on. He was never really into celebrities and it was pretty funny. I am still not sure why he was so into it when he was so sick at the end.
During this time I knew it was the end and he was accepting that he couldn't fight this. I took the opportunity to ask him what he wanted for his burial and funeral. I was quite surprised at what he did want and happy to be able to have that conversation. I would have expected him to want to be buried in some goofy outfit, but he wanted a suit. I did bury him in his Jordans though because he always had to have new Jordans for work, even when he was wearing a suit or dress clothes. I think he thought it helped him fit in with his students. He also wanted to be put into the wall and not in the ground, again something I would never have guessed. I went with his sister to buy a suit for his burial and his sister actually tried it on to see if it would fit him. That was fun explaining to the salesperson at the store.
My Dad went with some of his family to check out funeral homes and cemeteries. I was to make the final decisions, but plans needed to be put into place. I didn't have it in me to be "shopping" around for this stuff. It was hard enough to do the final decisions.
Time was slowly closing in and I just felt like I was waiting for him to die and my life had been at a standstill for 8 months. All my hopes and dreams also slowly fading.
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I still think of Ray every time TMZ is on!
ReplyDeleteAlthough we never got to the hospice stage, (we never left the hospital) reading about final days brings back so many memories. As always, I send hugs to you and your girls.
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