I’m writing a blog posts today to share a little about my personal life. Those of you that have been following me for awhile have seen a few posts about what has been happening. Unfortunately, back in October, my husband was diagnosed with terminal brain cancer.
We were understandably devastated but we had no idea what lay ahead for us. We cried together and held each other during our sleepless nights. We had many conversations in the beginning about our love and commitment for each other. As time went by, those conversations got fewer and fewer.
Then, my husband got to work taking care of things–we found a lawyer and drew up paperwork so I would be able to make decisions for him if he became unable to; we contacted family and let them know; and some general things about running the house that he always had taken care of.
We drove into Orlando for his brain surgery. He was worried he might not know who everyone was afterwards, but he did. In fact, he was cracking jokes and making us all laugh.
But, that positivity didn’t last. He had a brain bleed and fell into a deep sleep. Not a coma, but close. I was beyond worried and stressed. He recovered and was released to rehab which he hated but overtime he wound up really liking his physical therapist and his speech therapist. Those people called to that line of work are worth their weight in gold.
He developed an infection at the wound site and had to go in for a second surgery to remove that piece of scalp. He would now have a soft spot. He had to go on 6 weeks of intravenous antibiotics. His radiation treatment, of which he had 6 days of, was put on hold. Then, it took 3 weeks after he was cleared of the infection to get started again on radiation. He finished the full treatment without any sickness or hair loss. We were thrilled! He rang the bell at the office!
Again, that positivity did not last. 8-10 days later, he developed late onset reaction to chemotherapy and radiation. He began declining but I couldn’t see it. I thought he was just tired from chemo/radiation and we were taking him off his steroid that he had started in October which could make one very tired.
He slept A LOT! And then, he began to not be hungry. He complained his stomach hurt and would often rub it. Sometimes he would say his stomach felt sour like he had eaten bad cheese. The doctors confirmed that the antibiotic he was on (he had developed a second infection) could make his stomach sour. So, I thought that’s why he wasn’t hungry.
But, no, it was the beginning of the end. Towards the end, he would have weird delusions. He told me that someone had dropped him out of the attic. There was an attic in the house he grew up in. I had no idea if he was reliving a memory or having a bad dream or if his head hurt and his body was trying to “create” a reason why.
His antibiotic ended and he asked for a cheesesteak (his favorite) and he ate a little bit. I was encouraged! The doctors and nurses shook their heads, though, and said it wasn’t enough to sustain life. But, if you haven’t eaten in 6 weeks, you’re not going to eat a big meal. I still couldn’t see it.
A nurse a month prior mentioned maybe he was giving up. I asked him and he said no vehemently. His primary doctor had told me to call hospice and put them on hold. That’s a weird way to put it, but I think she was trying to be delicate. The rehab doctor said we would have to call hospice if he wouldn’t take a feeding tube. That was the first inkling that something was wrong. Then, his radiation doctor said his will wasn’t giving up, it was his body. It was tired. He had many different things go wrong throughout this time while fighting brain cancer, his body just couldn’t recover. That made more sense than him actually giving up and explained his vehement response to my question previously.
But, it took a kind doctor actually pulling up a chair and sitting down with me and gently explaining that we shouldn’t pursue aggressive treatment. I wholeheartedly agreed that we should not continue with the monthly chemotherapy but didn’t realize she meant any treatment at all. It took several more conversations with her and a couple conversations with the hospice doctor before I started to see what they were really saying.
It took having a conversation with my husband, though, that actually made it real. He told me he was tired of all of this and didn’t want to do it anymore. He said he knew he wasn’t going to be here much longer. He said he wasn’t afraid to die and that he knew where he was going and was ready to meet his God. I have never wept so hard in all my life.
You see, I knew I had to have a conversation with him about his life coming to an end but I didn’t know how. I had prayed that day for the Lord to help me have that conversation. When I arrived at the hospital, he was not in the room. He was away having a procedure. When he came back in, that’s when he told me he was tired of all of it. He opened the door to be able to have the most difficult conversation you could ever have with a loved one in your life. I knew this opening, this opportunity was a gift from God to allow us to have this beautiful, albeit, heart-wrenching conversation.
We spoke again of our love and the wonderful memories we shared and the beautiful family we had. I told him that when he gets up there, if he’s able, to take care of me. He said, of course he would. I told him that when it was my turn, I would come running into his arms. I wept and stroked his arm and hand.
He was completely aware of what we were talking about and it felt like my old Joe, the one before he got sick and his mind quit working as good as it had. But, then, he started saying things that didn’t make sense and in a flash, the moment of pure, blissful love flowing between us had ended. We were back in the dark hospital room struggling with the reality of our relationship coming to an end, at least an end here on earth.
I called for hospice on a Thursday about a week and a half after that conversation. It took a few days for the hospice doctor to sign off and the hospice nurse to come. They moved him to Hospice House on a Monday and he died that Friday peacefully and with family surrounding him. That was May 31st. Only 7 months after his diagnosis.
I have been reeling at losing the love of my life, my soul mate, my best friend–the best thing that has ever happened to me. He brought such healing to my life. So, I have been attracted to books that either talk about grief, or are of a spiritual, uplifting nature, or talk about someone else’s experience.
That’s when I came across Abbie Johnson Taylor’s book called My Ideal Partner, How I Met, Married and Cared for the Man I Loved Despite Debilitating Odds. You see, Abbie and her husband were both blind AND he had a massive stroke that paralyzed his left side.
I started reading it and only put it down once and that was because I had to make dinner.
Here’s my review on Amazon
5.0 out of 5 stars
Caregiving, Love, and Loss
July 14, 2019Format: Kindle Edition
After having just lost my husband 6 weeks ago to brain cancer and being his caregiver, I found myself in this book. Similar thoughts and feelings. I never knew before I was one how difficult it was to be a caregiver. Watching your big strong husband decline and doing everything in your power to try and ease their suffering is beyond difficult. This was a very good book and well-written. What a beautiful love they shared. Anyone who’s gone through a similar situation will relate and those that haven’t will gain some insight into our world.
If you made it this far, I was to thank you for stopping by my blog today. I know it’s different from my usual posts about children and children’s books and those will return again next week, but I thought you might want to hear a little bit about what has been going on in my life and to read a great book that helps give you insight into what it is to be a caregiver and then lose your partner.
In the future, I may have a book of my own to share our story. We’ll see. Right now, I’m grieving.