Today is the big day--Jon's first day back home! It's hard to believe it after three weeks in the hospital. I've got to say the last week has been a rollercoaster of emotions. Last Friday, his medical/therapy team gave us their update on what their recommendations are for his discharge, and some of it was hard to hear. They recommended 24/7 care; because of his cognitive and memory issues. If he were home alone and there was a fire, there was no certainty that he would be able to call 911, or realize he should leave the house. At that point, there were also some substantial coordination issues and assistive devices needed during his daily routine (a wheelchair and walker). It was a very, very difficult day.
Saturday I made the choice that whatever was ahead, we would make it work. I would be happy for every moment we have. I married the sweetest most loving person on Earth, and that had not changed one bit. If you had told me two months ago that I would take my husband to the park in a wheelchair, I would have cried myself to sleep every night and felt sorry for myself. But the day, on Saturday, I felt nothing but joy, and happiness that we had made it through, and every day could be better than the last.
Sunday was quiet, with the boys and me spending lunch at the hospital, waiting for Jon's therapy to be over. Earlier in the day (we didn't realize it), his physical therapist, Natalie, had him walk across the street to the park. He was pretty tired, so we just worked on puzzles before leaving to let Jon sleep.
Monday and Tuesday something really jumpstarted, and suddenly Jon started speaking in full sentences, getting more right answers on cognitive and memory assessments, walking longer distances, and climbing stairs. The motor, coordination, concentration, and cognitive all build off each other, and by Tuesday, he was commenting about his least favorite president, "that guy is such an idiot," and talking about yesterday, today, and tomorrow. He also remembered his speech therapist's name, which had been difficult previously.
So today when I arrived at 9 a.m., he had packed up all his belongings in the bags I left in his room, and was ready to go home. I asked him if he had packed everything himself, and he said, "Yes, because they don't really tell you what's going to happen next around here." Pretty, pretty amazing considering what three weeks ago looked like, when he was not capable of remembering time, his name, his kids names.
Does this happen for all neuro patients? Is there a natural arc for progress for hemorrhagic stroke? There are no guarantees, there are no answers, no certainties. For every test looking for tumors, or tangled blood vessels, you naturally prepare for the worst news, and nurture as much hope you can muster. It's all you can do.
BUT.
I will tell you this. Hope matters. Prayers and good wishes matter. Sending tiny texts of encouragements, giant hugs, a listening ear, all matter.
The soothing presence of a gentle hand and voice, reading the needs of the patient, bringing music, joy, comfort, and signaling the expectation that wellness is around the corner, within your grasp, is as healing as any treatment. This is true for the patient as well as the family members. One nurse said to me she was fine with me staying beyond visiting time because "I know you're good for him to get better."
If we think of the body as as system that wants to heal, then we can see that the state of the mind, the presence of love, the encouragement to come back to all the love we have built and earned in our lives, is the best medicine.
Welcome home, darling, right where you belong.
This one made me teary. Thank you, Minne, for sharing this experience so lovingly and candidly. Your missives are a gift. Love to all of you.
ReplyDeleteSuch good news. Long road ahead, I know but he's doing so much better. And like you said, it can only go up from here.
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