ROUTINE, ROUTINE, ROUTINE
Once we were back home life became very much about routine, as long as I didn’t do anything to deviate from his normal routine, Alan was becoming more mellow, less aggressive and I realized he was now in the next stage of this terrible disease. My soul sisters Jackie and Rashanee were extremely supportive – Jackie was always popping in with flowers, chocolates and lots of hugs; and Rashanee who was studying to become a nurse would stop in for a cup of tea and a chat – so supportive, I am very blessed. Years earlier Alan & I had been to Ireland and visited the Guiness factory, and Jackie bought him a t-shirt for his birthday. At this point, I would still let him have a sip of Guinness now and again – he always remembered the sales slogan “Guiness is Good For You” – he would always laugh and say “powerful” – one sip was enough.
His neurologist had been trying different medication, and the Exelon patch brought him out into terrible hives. He was starting to shuffle his feet and his movements became much slower, and his complexion very ruddy. He would still go out in the garden and sit and have a cigarette; as you can see from this photo he had lit up two!
Increasingly he would just sit and empty the cigarettes out of the packet, line them up like soldiers then move them around, then he started breaking them apart. After a short while he forgot about the cigarettes altogether. He was no longer following me about the house, and he was losing his language skills – aphasia of the brain. All I knew was that my dear, dear, man was disappearing before my eyes. My sadness was ceaseless, but I managed to keep it quarantined in a governable little quarter of my heart, which I rarely acknowledged. I think there is a level of grief so deep that it stops resembling grief at all. The pain becomes so severe that the body can no longer feel it; it’s as if the grief cauterizes itself, scars over, prevents all feeling and becomes a numbness that is a kind of mercy. I just kept trying to go about my daily caregiving duties and household chores as though I was manipulated by some blunt, relentless external force. I could never just sit down and relax – I was almost turning to work for solace or distraction.
Prior to our trip back to England we had been to see an Eldercare Attorney, and we had revised our Wills, Power of Attorney and Do Not Resuscitate forms, so I had already taken care of the legal issues, now it was just trying to find the enjoyment in each day, each precious moment – that is forever treasured in my heart.
I did try taking Alan to a Daycare Center one time, but he asked me to take him home. It’s funny, after our trip back to England, he never again mentioned “home”.
Many crazy things happened during that time, and in the end, you just take them in stride – I knew we were on the home stretch and I just wanted to do the best I could for this incredible, loving man, who had always taken such good care of me. It was an honor and my pleasure to care for him on this journey, a love and bond so deep it is indescribable – I was privileged