Mary has been in her new home – a March of Dimes facility – for five full months. It’s been an up-and-down period beset by various issues to which Mary, thankfully, remains totally unaware.
She has been lucky to retain the PSWs who have worked with her for four years and they continue to ensure her care and safety round the clock.They know her so well they can almost predict her reactions and can read her better than anyone, understanding her emotions and what she is trying to say.
But we’ve all noticed Mary’s health has suffered somewhat and we are baffled. She has always been physically hotter than average since her brain injury, but during the past few months she has been so overheated and clammy, the only way to make her comfortable is to put her in shorts and a T-shirt and have the floor fan on low. Odd for January, but it’s all we can do to help her.
Blood work shows she’s fine, so we’ve asked for a referral to a neurosurgeon to have the shunt checked. So far, it’s been almost a month and Mary’s GP has been unable to find anyone willing to take her on.
One government official has suggested we apply to take her to the U.S. to see a specialist. She needs a CT scan and someone who can ensure that the shunt is still functioning as it should, and who can perhaps give us some answers.
After all this poor woman has gone through, we’d like to avoid taking her beyond the border. Her immobility and the extent of her disability would make any travel outside Toronto extremely difficult, so we’re hoping (a word we don’t use much anymore, actually), that someone can be found in the Toronto area.
When you deal with someone with major disabilities, it’s the little things that break you. And there have been many, many petty things that have nearly done us in during the past few months. Some of it is bureaucratic/political stuff, some of it the continuing grind of having a disabled family member.
While the move certainly mitigated the financial aspect of accommodation for Mary, it has not lessened the load. We are still responsible for supplying Mary’s every need, from rolls of toilet paper to shampoo, food and clothing, cleaning supplies and monitoring her medical care.
There is one bathroom available, used mostly by Mary and visitors, but we’ve even had to monitor the toilet paper as the facility doesn’t provide this. Rolls were vanishing at a great speed, so we’ve had to leave essentials in her room and remember to take the necessaries with us.
Six double rolls of paper towels vanished within a few days.
Petty stuff, but pricey and annoying.
Two years ago, when her apartment expenses (food, supplies and rent) of $3,000 a month became just too exorbitant and the stress too difficult, we asked CCAC for an alternative place for Mary, hoping it would ease the load a bit.
But according to CCAC, no one – save one facility that seems to take most of the city's dementia patients – wanted to take her on. The rules and regulations of LTC facilities and nursing homes are a thing to behold. And there are not a lot of alternative options for people like Mary.
So at the moment, she is a “customer” at this independent living facility with certain times allotted to her for bathing, etc. Mary is not independent, nor will she ever be. She is not a customer, she is a patient. She has many needs and is virtually helpless.
Needless to say, there has been a clash of ideologies, among other things, and we are feeling frustrated.
The one beneficial thing to come out of her new situation is the work of a group called the North Yorkers for Disabled Persons, brought in by the March of Dimes. Two of their staff, who deal with communications, have come in and assessed Mary, trying to find ways to help her communicate more efficiently with her Dynavox and in other ways.
Last week they came in and had her write a story on her family going on a vacation. By using words as prompts, they kept her working on the story long after her memory would normally shut down – after about two minutes.
Like most people who get to know Mary, they are impressed by her typing efficiency with the Dynavox, the fact she insists on typing exactly what she wants to say and with perfect grammar and punctuation. (She’s not the daughter of two editors for nothing.)
This aspect of Mary’s brain has often baffled us as we watch her type and correct words, inserting commas, and making sure her communication with us is perfect. For example: “Also, I’d like to thank my mom and dad for bringing coffee. And thank you, too, to Maria. (PSW)”
So there’s an awful lot of Mary still left deep inside her brain.
We’d love to be able to get her more therapies and rehab, which she’s never had. At the moment, we can only get physiotherapy twice a month. Our physios have just taught staff at the facility how to do range of motion exercises with Mary, which is a good thing.
The neurosurgeon who initially dealt with Mary said the most recovery after brain damage is done within two years of the event. It’s been almost eight years now.
We’d like to know more – if we can find the right expert to advise us!
Mary’s cousins tell us they are launching a gofundme page to help us pay for therapies for Mary. She also needs a new wheelchair.
They are going to launch it on her birthday, Feb 19, which she shares with her twin brother. They will be 39.
I’ll do an update then.
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