Alzheimer’s forces families to make tough choices

Many families who have lost a loved one to Alzheimer's will know the journey through the various stages of this disease is a bumpy ride.

by Lesley Horn

Many families who have lost a loved one to Alzheimer’s will know the journey through the various stages of this disease is a bumpy ride. At first one is aware that something is wrong, then the denial and finally knowing that the only other alternative is placement.

Many families will know that placing a loved one in a “facility” is the hardest decision to make. It is like preparing your child for boarding school: new clothes, labelling all items. Did I remember everything? Will she eat? Then comes the day to walk out of their home into an entirely new environment.

Auntie Bubs, my stepmother, came with me three years ago to the Yukon. She had Alzheimer’s. As the disease progressed, so did her safety, living at home. How do you prepare someone with dementia to make that transition?

“Where are you taking me? I don’t understand,” she said.

I still remember her words and the little white lies I was coming up with all the way to Copper Ridge. Yes this was going to be her new home. I had already done the tour so I knew what to expect and there was a huge lump in my throat.

When we arrived, we were met by her social worker at the door and taken to her room. I could see the anxiety build up as she was wheeled into what was to become her area.

“Why am I here? I don’t understand?” she kept asking and would not take her coat off.

For many weeks, as she settled in, those questions continued and as I would leave to go, she would say “close the door.” Gradually, as she settled in, Bubs would venture out to the kitchen and ask for tea. She loved her tea. She would ask how much she owed for it.

Bubs passed away peacefully on March 30. Our journey lasted a year and my daily visits and micro-managing of the staff have ended. I wake up every day and say, “Now what? I look at my watch and think, “Oh, it’s feeding time at Copper Ridge.”

But this is not about me, this is about Copper Ridge and the staff who were with me on this journey every step of the way. I think I drove each and every one a little batty with my notes, prompts, and always the question, “did she eat?” I even started a logbook for tracking every spoonful of food Bubs would have. The staff complied to my wishes.

There were days I would come home and fret and question the care. There would be meetings and then there was the call that Bubs had fallen and had broken her hip. Vancouver here we come.

Blame, guilt, questions, these are all the emotions families go through every day when we place our loved ones in care. What really goes on in a facility? Is it short-staffed and are the over-worked caregivers properly trained?

But as I process the grief of losing Bubs, I also want to acknowledge the enormous care and support I got from all the staff at Copper Ridge, especially in the last few weeks prior to the passing of Bubs.

At my final meeting with the staff to access Bub’s care, I asked the usual questions and most of all “what more can I do?” A cry for help. It was all very emotional. I will always remember what they told me and how from that moment on a light bulb came on.

“We know how much you care for Bubs and that you want to see her get better, how much you want to see her eat and nourish herself, but Alzheimer’s is a disease that does not get better. Instead of stressing yourself, make your visits now, spend quality time with Bubs, just hold her hand and enjoy the time with her.”

These were strong words but the kindness and support I felt that day was to change my attitude and connection with Bubs over the next few weeks of her life. I felt a sense of relief and the transfer of trust and faith in the system became stronger and my visits with Bubs were peaceful and less stressful.

Yes, Copper Ridge, home to the elderly, has gone through many bumps along the road but as I took my last walk out of “the facility” I felt a sense of loss. I felt like a parent when her child graduates and leaves home to explore another life and we are left to pack the few items left behind and clear out their room. I looked around her room one last time, took down pictures and with that took a deep breath and locked in the memories of the many visits and conversations and laughs we had shared.

Not looking left or right I walk from her room, down the corridors and out through the front doors and as the doors closed behind me, the tears fell and I thought, “What now?” I realized that not only had Bubs found a new home but Copper Ridge had become family and home for me over the past year.

So here’s to you, Bubs. It was a great ride we had together here in Whitehorse and I tip my hat off to Copper Ridge for a job well done and to all the dedicated staff who are faced with challenges and difficult situations every day and do it no matter what. Would we?

Thank you for allowing me to be me and thank you for your caring, your dedication, the hugs, the nods the support and good advice and for opening your doors and giving Bubs a home and making her last days peaceful.

Thank you from Aunt Bubs, from Andrea and from the rest of her family in Toronto.