This is my dad, Michael O’Leary. He was also a grandfather, father of 4 daughters, husband, brother and son. He worked hard for his family and community. When my mother died of cancer over a decade ago, he was her primary caregiver. He always tried to shield his daughters from the ‘work of death’ and we didn’t know all that went into her final days. The decisions they made, the work he did, and the heartache he probably suffered. To be honest, I’m not entirely sure I understand what it was like for him – even now. When my father died a few years ago, my sisters and I were his caregivers after he suffered an injury resulting in major surgery. After being at home for a short time, he quickly developed an infection and he died because of that infection. As one of his caregivers, I know my father was fundamentally let down by the home care system
I, having some extended knowledge of the healthcare system, did advocate for my father but did not receive the care I had hoped we would be able to secure despite our best efforts. The most difficult part of my father’s illness journey was taping into the resources we didn’t know were there. The ‘system’ seemed design to reveal only the most basic aspects of the supports available. It was up to us – the patient/family, to prod and advocate for what else may be there. As an example, we discussed with the care coordinator that my father was unable to drive to a wound clinic out of town. They told us, and we accepted that he would only have 3hr/week nursing visits to change dressings. No one told us we could have taxi vouchers, or tap into community supports to drive my father so that he could receive more frequent and specialized help at the Wound Care Clinic. As such, the nurses coming to our family home didn’t have the expertise to change his equipment and dressings and he was often left without the prescribed specialized care until the next visit. I truly believe that was a primary factor in his subsequent infection, of which he died from 4 months later. He was only 70.
Over the course of a weekend, my father’s infection became very serious and he was admitted to hospital. Once in the hospital the doctors were so busy trying to say that his rapid decline was not a result of the care he had received in hospital, that I as a caregiver ended up having to claw for every single answer to all questions. No one was willing to be straight and direct even though all I wanted was answers to my questions. I wished the hospital staff had communicated the way I needed; given me the information I was desperately seeking to make decisions. Actually, at one point I yelled into the crowded hospital room “IS HE DYING OR NOT?!” That is how foggy everyone’s answers always were. He died that night. It made my last day with my father so frustrating, and I hold onto that frustration a lot. I have to constantly remind myself it was just a fraction of my time with him
Your story doesn’t have to be the same as ours. My advice for others is: Don’t leave yourself unprepared by burying the inevitable. Approach it now before you are overwhelmed later. You will have to work to find and fight for the supports you may think you are entitled to. If you don’t have your ducks in a row before it all comes to a head, you will end up not having access to everything you need, when you need it. As time goes on I am sad less often, and I dwell on the last months less and less. Our time with our loved ones is so precious. I cherish every single moment my child had with his Grandpa. I try to remember every forehead kiss I ever received.