5) Legal Issues: We both already had our Powers of Attorney for Personal Care and Continuing Care in place; as well as Living Wills. Tony and I discussed whether changes to his wishes might need amending – we decided to meet with our doctor and discuss a Do Not resuscitate order. This ensured that no means to revive him would be initiated by paramedics if they were called in an emergency and Tony had no vital signs of life. “I want one of those,” declared Tony.
Thereafter, I kept the necessary paperwork in a zip-sealed plastic bag on the refrigerator door. This included the Do Not Resuscitate certificate, his Power of Attorney for Personal Care, a list of Tony’s medications and report copies of Tony’s heart investigations. Local Emergency Services providers had issued decals for the entry door to the house, and labels for the front of the bag, so they know to look for information.
6) I contacted the local Community Care Access Center (CCAC in Ontario) to arrange an initial assessment in our home and open a file for Tony. Our case worker is called once a year to keep on top of any changes in our situation so he did not slip through the Health Care cracks.
7) Emergency measures procedure:
o We had no Plan B. It was worrisome and I knew we needed backup.
o The questions we discussed together were:
What to do if I fell ill, was injured, or was in psychological crisis suffering from burn-out. We’d heard it was possible.
Would Tony know enough to press the button on his 24-hour personal alarm system already installed in our home?
Was there a neighbor who could step in till family arrives or other help?
Were all of our very important papers all together in a location where someone could locate them?
8) Rest Stops:
– I quickly learned from attending the Caregiver’s Support Group the well-recognized fact that the primary caregiver sometimes falls by the wayside due to “burnout” or new health issues.
A caregiver’s personal resilience is challenged because we are determined to throw ourselves into the work of care giving – leaving no stone unturned.
Recognize that we can’t do it all, being realistic and realizing we aren’t Superwoman or Superman are essential keys to surviving the journey.
– Available spaces are sometimes not local… I learned where those facilities were located to identify preferred accommodation and facilities for short-term stays when I needed a break.
Two caregivers in my Support group already had availed themselves of help, so I asked for their recommendations.
Driver fatigue can be fatal; to stay safe it’s essential that we pull over to the side of the road sometimes and take a break!
– I did my best to sometime step away from the up front and personal perspectives – and put myself in the place of a counselor – what suggestions might I have for a newly-licensed or intermediate driver?
Seeing the big picture through objective eyes is meaningful, it helped me see “other ways” I could change up or improve existing routines at home, or leave well enough alone. Methods used to provide Tony’s care and safety at home constantly evolved as we travelled the road.
If Tony seemed suddenly reluctant or resistant to a particular task, I always investigated further. When I encouraged him to shave, for example, and he reappeared still looking grizzled, I discovered that the blades in his razor were pulling rather than cutting. An easy fix!
– I referred to the roadmap others had followed, and developed increased awareness of upcoming detours where I would need to adjust and rethink the plan of action. There always has to be an alternate route.
– Fine-tuning my weather watching abilities was a new task too, that is, being sensitive to atmospheric changes at home that are storm warnings. Tony hadn’t experienced this journey before either, and his usual judgment was impaired.
– Though often difficult to accomplish, especially when my best intentions were misinterpreted, I realized that stepping away from confrontation and redirecting to another subject is always preferable to arguing.
Compromise, whenever possible and change the psychological channels to another topic increases navigating skills!
– Twice a year I loved to change the furniture around, including pictures on the wall and draperies. At the first whiff of spring or twittering bird sounds I feel twitchy with anticipation. Open all the windows and doors, air the place out, and create a different environment. Tony never was one for surprises, and his comfort level with change was noticeably affected.
I knew that what was familiar at home should remain the same, though I did find that if I told him in advance that it’s time for “the other drapes and the other pictures” he didn’t object.
10) The long and winding road…
– When the time came that Tony’s condition qualified for his name to be added to the Admissions List for long-term care, I knew we had crested the steepest slope and were beginning the descent to the end of my caregiver journey. The wait time is lengthy, and Tony wasn’t nearly ready, but with diminishing services we thought it better to be proactive instead of waiting until crisis time.
– Tony himself broached the subject and discussed the process with ourcase worker; then signed the application forms.
I felt dreadful, and in all honesty it seemed like I was giving up and abandoning my passenger at the side of the road.
In truth however, after a crying jag in the torrents of the shower, I convinced myself that with an eventual completion date, I would be able to retire from driving full-time. Surely, stepping away from the driver’s seat surely would be a welcome relief.