My last blog post was Sept. 18, two days before I was to undergo a total hip replacement. That was a lifetime ago.
Today, more than a month later, my hip is nearly repaired and I am back to driving and usual activities. Sadly, tragically, those activities now include caring for my husband at home, with hospice and caregivers as support.
We have been through an unbelievable nightmare, with my dear Tommy suffering more than anyone else. It all started with swallowing. For several months he had to be reminded to chew one mouthful before taking another. Then, that routine started to deteriorate until he could not swallow anything. Sips of water or Gatorade were taken in, then spat out.
Dehydration was a worry. One evening, when I was already upstairs, I heard a thump. I ran down and at the foot of the stairs was my husband, awake, unhurt, but seeming to wonder what happened to him.
The following morning, Stuart -- a CNA (Certified Nursing Assistant) who had been driving Tommy to the YMCA several days a week -- and I took him to Northwestern's ER. He was admitted with severe dehydration. Because Tommy could not swallow -- which we all assumed was a symptom of his Primary Progressive Aphasia --- the ENT team recommended a tracheotomy (lest he smother) and a feeding tube for nourishment.
This is the part where the nightmare become so dark and frightening that we pray it is indeed something happening in our sleep. But, it was not to be; it continued when awake. When the ENT team attempted to insert a tube through his mouth to his stomach, they encountered a blockage, a mass. Doctor's diagnosis: "Squamous cell carcinoma of supraglottis. You are not a candidate for treatment for this cancer." Throat cancer. Aggressive.
Our decision was to bring him home to hospice care where he can be kept as comfortable as possible.
After 10 days in the hospital, on Oct. 21 we returned via ambulance to our house in Independence Park. Several neighbors had already been on board to assist with equipment delivery and to get Tommy all set up in our bedroom. Other neighbors wrote their phone numbers on slips of papers with the words, "anytime, 24 hours."
Now, my husband is hooked up to balky machines that provide oxygen and humidity with a tube that goes directly into his tracheotomy. Every few hours, he will cough, alerting me and a CNA, Rebecca, or other round-the-clock caregivers, that his trach is accumulating mucous and secretions and making it difficult for him to breathe. That's where the suctioning comes in. I watched the hospital nurses perform the procedure, studied a YouTube video, assisted Rebecca on her first suction, and then, miraculously did the cleanse, insert, twist, suction, and extraction on my own.
Of course, the big question is did his brain degeneration and aphasia cause the swallowing problem, or the throat cancer? The physicians say it could be a combination of both illnesses. Does it matter?
All that is important now, is keeping Tommy comfortable, peaceful, and pain-free. He is home, in his own bedroom. That's all I can ask for now.