When travelers set out on a journey, they seldom leave home without at least an idea of the route they will take to reach their ultimate destination. I was an avid traveler and seldom lost my bearings when in unfamiliar territory. I was also intent and not prone to panic if I felt uncertain. Tony’s official diagnosis was the unmistakable signal to “Start Your Engine(s)” and stay on course to the Finish.
Studying as much information as I could find to give me a better sense of the route was invaluable, I realized almost from the outset that newly-licensed caregivers always take the wheel and drive the entire trip. This was not to be a high-speed roadway however, getting from A to B would be a slower process along unfamiliar side roads, U-turn’s, misreading the signs, feeling lost, and then recalculating! There would be no benefit of a “GPS” system to direct us!
Guidebooks didn’t provide all the answers as to which way to proceed.
1) In the beginning – Public information brochures at our doctor’s office and local library were available. I kept the literature hidden in a drawer and studied when she could.
– Medical – Learn the signs, testing processes, and treatment steps
– Unexpected potholes – as Tony’s condition developed there was, for example, an unforeseen loss of my sexual partner. Putting things in perspective included understanding that both physiological capabilities and psychological interest had fizzled out. It was not a personal affront.
2) Financial concerns weren’t worrisome to me – I had always handled our finances, just as Tony’s first wife did. Tony had never used a debit card to withdraw money from the bank and his use of the telephone quelled, so there were no credit card charges other than monthly subscription to the city newspaper unless we discussed them and I completed the transaction.
3) Income Taxes: I gathered information when needed – once the official diagnosis was in, my first step was to apply for the income tax Disability Credit for Tony.
Other financial aspects such as involuntary separation are income-based and not applicable to everyone’s circumstances. The accountant and the internet website for Canada Revenue and Service Canada were both excellent sources of information. Conditions apply and qualifiers must be reviewed before acceptance can be determined.
Income splitting was also a factor, especially when Tony’s name was added to the wait list for Long Term Care. His income tax Assessment would be taken into account when the time came to complete the final paperwork for admission.
4) Social concerns: I had heard of other caregivers who quickly developed coping skills for immediate personal response when inappropriate behavior by their loved one was publicly exhibited, including sexual connotation. There are no premeditated intentions – it is affected brain dysfunction. Wolf-whistles, fanny pinching or leering should be forgiven by the offended person when the caregiver’s explanation is swift and succinct.
One lady at the Caregiver’s Group told how she simply led her husband out of the room without even zipping his pants. A no muss, no fuss strategy which worked that one time. The wife wisely determined to never find herself in that situation again. She had half- smiled and half-cried when she related the story.
Even in his younger years her husband had never been so uninhibited!
Tony’s only public blunders were table manners, which did not display until into his fourth year of the disease. The pleasures of eating out eventually were out-weighed by Tony’s reluctance to leave the house. Incontinence, impaired ability to participate in ongoing conversations, and apathy for almost everything but sports contributed to his decision…(to be continued Dec.20th)