Dee and Neil made it back to Canada in April in time to do their taxes. Yes. Canada Revenue does not care what personal travails you experience, only that you complete your taxes by April 30th. Along with taxes, Dee and Neil had other life-stuff to tidy up, like securing a new renter for their home, packing the last of their household items and moving them 700 kms into storage, RV repair, and visits with family and friends. And if they were not busy enough with organizing their lives, they stopped at Dee's sister's home for a quick visit, and ended up staying over a week. Why?
Because Dee wanted to help.
Yes, in the throes of her and Neil's personal chaos, she felt compelled to kick-start, oversee, and help complete a few improvement projects around her sister's, to help improve the saleability of the home. One of the projects?
A new deck!
Dee, quite rightly, pointed out that the old cement steps were not an only awkward, they were unsightly, and should be replaced with a nice, and much safer, wood deck. The next day the workmen arrived to take measurements, and two days later they went to work...
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| Deck in progress. Photo by Deborah, copyright 2014 |
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| Dee staining completed deck. Photo by Deborah, copyright 2014 |
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| Neil staining lattice. Photo by Deborah, copyright 2014 |
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| Benefactress of Dee and Neil's aid. Photo by Deborah, copyright 2014 |
In Arizona, Dee and Neil camped out in an RV park with family and friends. Now they are on their own. And Neil's health is deteriorating.
Do not let the above photos fool you. They are snippets of time in what truly is a very long day, for both.
Sleep eludes them. Neil coughs much of the night to keep his lungs clear; Dee wakes to help him, or just to lay quietly and ensure he resumes breathing. And then there are the trips to the restroom...
Come morning, Dee is up early to walk the dogs, feed them, and help Neil dress, before making breakfast. She watches Neil like a hawk throughout the day, especially when he eats, to ensure he swallows, because PSP is robbing him of the ability to control all his muscles. Every now and then she has to grasp his shoulder and shout, Hey!, to startle him out of a PSP-related spasm where his eyes shut, his hands clench, and he is essentially, "frozen".
"Swallow, AJ, swallow," she says as she strokes his arm after bringing him back to focus, gently reminding him to think about the action, so he can compel his body to comply.
Much of their verbal conversation is one-sided. Dee asks questions, or makes comments, and Neil replies with either Thumbs-up for Yes, Thumbs-down for No, and waggling his index finger for So-So. Every now and then Neil forces out a few words, but it takes a toll on him. Not because his ability to think is affected--it's not--but because he has to think to force the words out. The muscle stimulation often induces a coughing fit, which is actually a good thing.
Mucus build-up leads to pneumonia. Pneumonia and choking are the leading causes of death in PSP sufferers. The more Neil speaks, the more he coughs, the more mucus he can clear, and the more exhausted he becomes.
It's a vicious disease.
A stealthy disease.
An irreversible disease.
PSP is slowly strangling Neil, and forcing Dee to watch. So, if you see them during their travels, help them. Give them what you can.
A hug. A coffee. A beer. Your friendship. Your support. A gift card. A place to stay. A shoulder to cry on. A sympathetic ear. Share a joke, your love, your kindness and encouragement...Whatever you can spare. This is their journey and one they have no choice but to take, but there is no reason they should have to go it alone.
Just be there.
For them.
Because it's the one thing, you can do.
Deborah
Man becomes man only by his intelligence, but he is man only by his heart. ~Henri Frederic Amiel
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