*Primary Progressive Aphasia, a degeneration of the part of the brain that affects speech.
Tuesday, October 30, 2012
Tommy has an untroubled brow. His face remains ruddy. His body is calm, arms propped on pillows to keep him comfortable, two pillows behind his sleeping head. A loose sheet covers his quietly breathing, thinning body.
Regularly scheduled doses of Morphine and Haldol, with an occasional drop of Atropine, are keeping my husband pain-free and tranquil, the goal of hospice.
Tommy, who worked out at the Lakeview YMCA three-times-a-week for 40 years, is hanging in. "There's no way of telling," doctors and nurses tell me. "Three days, three weeks?" Those estimates are not my husband's concern. His body will leave this earth when it is good and ready. I know this, I am prepared, even though at times I expect Tommy to yawn, raise his arms as if stretching, give me two thumbs up to indicate a good night’s sleep, then hop over the bed's steel sides, and dress.
That will not happen. My husband, when he decides he has had enough of his blubbering wife who strokes his head, holds his hand, and whispers "it's okay if you leave," will slow his breaths and that will be that.
Meanwhile, he is being cared for at home by me and a rotating roster of home health aides, hospice nurses, and Certified Nursing Assistants. A few of these people will be stellar -- like Stuart, the CNA who was originally hired to drive Tommy to the Y one day a week. Surprise: Stuart is receiving a PhD in nursing before he enters the college. I offered to write to Loyola's administration and tell them Stuart has completed all the necessary coursework.
Others I loved, like Rebecca, Qui, and Emile. Some I tolerated, and one I insisted never step foot in my house again. Along with inappropriate behavior; i.e. yammering loudly on her cell phone, she texted me constantly from the second floor for various items close at hand. But the straw was when she decided, without consulting me, to remove all of the supplies I had arranged in rows on our empty queen-sized bed, and place them instead on top of dressers, end tables, window sills, and on the floor of the shower hidden by a curtain.
"I wanted the room to look like a bedroom," she explained as she waved her hand atop the empty bedspread.
When the hospice nurse arrived, she shook her head and returned every box of gauze pads, suction tubes, bed pads, disposable underwear, lotions, and dozens of other supplies back to their original spots. "Much better," she said after all was returned. I hugged her.
I talk to my husband each time I enter the room. Once I pulled up a chair to read him a letter. Tommy had written it to me in 1996, two years before we married. By the grace of God, I kept it safe. My husband spoke of love, commitment, promises to care for me -- in beautiful handwriting, two pages full. At one point during my reading, he opened his eyes and looked at me, as if to say, "I remember writing that."
With every visitor that enters the house I say, "I'd like you to read Tommy's letter." Although his words were meant for me, I fear our friends will only recall the Tommy who struggled with aphasia and could no longer speak, who stopped reading mysteries, or who was unable to fix a broken cabinet door. I want them to know the Tommy who was smart, romantic, eloquent.
Many loved ones -- concerned about my well-being and ability to pay for ‘round-the-clock nursing care -- urged me upon leaving the hospital to place Tommy in hospice care in a different setting outside the home. “It will be overwhelming,” they predicted.
In a first email update to this group I admitted, “You were right, it’s overwhelming. But, I am doing it.”
Along with the hired caregivers, I am supported by friends, relatives, and neighbors who visit Tommy and me, who bring food and offer to handle any needed tasks. I have doled out assignments, from picking up Chicago hot dogs to taking my Honda Fit in for servicing.
We will get through this. Meanwhile, we keep watch for an untroubled brow.
Tuesday, October 23, 2012
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.