My Summer

Happy Monday. Keeping up my reading and reviewing has been a challenge since June 3, when my husband had a massive stroke. It came out of the blue on the evening of a day he described to me as "the best day ever!" He was working on several projects, but cleaned and organized our deck. He also found a new take-out place for wings and told me not to cook that night. The last words I heard him utter were, "I'm heading upstairs." He spent evenings in his study smoking and watching television, while I spent evenings in the family room lymphedema pumping and reading with my ears. I found him struggling to get out of his recliner an hour or so later when I went in to say good night. Thank goodness son #3 happened to be home visiting. He came out early for the Memorial Day weekend and brought his computer so that he could avoid traffic back into the city. He called the ambulance and got the dogs into a bedroom before the police arrived.

The stroke was massive. He had complete paralysis on his right side as well as expressive and receptive aphasia. My vigorous, vibrant, busy, bossy, creative husband of 36 years seemed destined for a life shifting from bed to wheelchair and wheelchair to bed with little or no ability to speak. His cognition was unaffected, as was his personality. He probably diagnosed himself before anyone and immediately began resisting treatment, which eventually included the insertion of a PEG, a stomach tube. In fact, his first words, two weeks after his stroke were, "No way," when I told him I was signing for one. That did not surprise me. He was refusing most medication and food by that time. And, so I did not sign consent. He made his wishes known. I could not imagine him being happy and fulfilled just sitting in a wheelchair, unable to walk, talk or use his hands to build something. He did participate in OT and PT though, as if hedging his bets. I suppose if he had significant improvement (miracles do happen), he might've changed his mind and begun eating.

He spent a month in the hospital before being transferred to an acute rehabilitation facility eighteen miles away. His PCP hoped that their expertise would help Mark "gain some traction and hope" for recovery. I hoped too, but knew in my heart that if meaningful recovery was not possible, Mark wasn't interested. He was eventually able stand with help and could balance once helped up, for about 30 seconds. He could "walk" with maximum assistance for ten feet several times each session. After a month, insurance dictated a move to a subacute nursing facility.

By this time, he had lost a significant amount of weight, was eating very little, drinking almost nothing, but still participating in OT and PT and even Speech. On Sunday, August 1, he stopped eating entirely. He refused PT on Monday. On Tuesday, I met with the care team of nurses, social worker and PT and decided that I would bring him home on hospice care on Thursday. He had made his decision.

On Wednesday afternoon, his breathing seemed a bit labored and when I told him that he was coming home to me the following day, he smiled a bit and shook his head. I left him at 6PM to grab dinner with a friend and left instructions to call me if he took a turn for the worse. I received that call at 11 and returned to the facility to find him on oxygen and struggling to breathe using all his accessory muscles. He was restless. The nurse had just called for another order for more morphine and once that was administered, he was calmer. I held his hand. I told him he worked really hard and that it was time to rest. I told him he would be missed. I told him that I loved him over and over until those accessory breathing muscles eventually got tired and stopped. I stayed in his line of vision until the end. I hope he knew I was there. He died nine weeks to the day of his stroke.

Those nine weeks were the longest/ shortest nine weeks of my life. I was glad that six of them happened after school let out for summer break. It was getting hard to teach all day, then visit him at the hospital and then take care of the dogs and things at home. Still, I managed to keep up the blogging about books I had already read. (I haven't reread those posts though. They may be incoherent messes!) Concentrating on any new reading definitely became a challenge. Even now, eleven days after his death, I have trouble.

I'm glad he met his retirement goals and that he had seven great years of retirement. He LOVED retirement. He always had a plan for each day and truly found joy in each and every day. I comfort myself knowing that living in the purgatory of a tube-fed stroke victim would not have brought him joy and that he died on his own terms, with single-minded determination and courage.

School starts for teachers on September 1, with students returning on the second. I hope I'm ready to return. Right now, I still feel raw and lonely and anxious. I continue to struggle with concentration and completion of tasks. I either have trouble falling asleep or wake up at 2AM and can't get back to sleep. My big, beautiful house has reminders of his creativity all over it, which I love, but it's very, very quiet because his presence was so large and loud. 

I find myself wanting to ask him all kinds of questions, like, who services the generator? He has three listed in his phone contacts and I don't know which of the three he settled on. My youngest had a polyp removed that showed pre-cancerous changes and my first thought was that Mark would take care of this. His birthday was on August 10, so I've already gotten through the first significant date without him. He never got to enjoy the Father's Day gift he bought for himself. It remains in the box, unopened. 

This stuff is so hard.