Making a Move to Long-Term Care

A hard choice, but the right choice for Ken and Liz

Alt=''After busy careers working in education in Toronto, Ken and Liz were enjoying a happy and active retirement. They moved to Elora from King City, Ontario, and quickly became involved in the local community. Ken was an active volunteer with the Elora Festival as a member of the Board and chair of their annual book sale. Liz continued to work on contract for various Ontario colleges.

They loved to travel and enjoyed cycling holidays and sea kayak adventures on both coasts of Canada, as well as tours and river cruises in beautiful locations around the world. When they weren’t traveling, Ken and Liz liked to work in their garden, keep up with politics and current events, and participate in book clubs and discussion groups.

Their idyllic retirement plans started to change when pain became a constant and eventually debilitating part of Ken’s life.

“I often say that 2012 was the year when life took a turn,” says Liz. Ken was living with a great deal of pain because of a condition called spinal stenosis. The pain was gradual at first, and a variety of treatments, including physiotherapy, chiropractic and acupuncture, provided some relief. Treatments culminated with epidural injections that helped to keep the condition under control.

“Things initially got better. We were able to go to Florida for the winter in 2015, but he had to take along a lot of pain medication.” The pain made their more adventure filled trips impossible. “We went on a Baltic cruise, and Ken tried so hard to do the walking tours, but he had to stop every 100 metres or so to sit down and get some relief.”

On their last winter escape to Florida in 2016, Ken’s condition became unbearable. They rushed home and Ken was soon admitted to Groves Memorial Community Hospital in Fergus. He was gravely ill with sepsis – an infection that was raging through his entire system. At one point, the doctors warned the family that he might not make it.

Although Ken survived, he spent 16 weeks in hospital recovering. He eventually made it home, but he wasn’t the same. Not only did he still have pain, but he also showed early signs of dementia.

Once Ken moved home, support from the WWLHIN came into play. “The support that we received was considerable and made life tolerable. With PSWs coming to help and a positive relationship with Ken’s Care Coordinator, I was able to be Ken’s primary caretaker,” explains Liz. “Everyone cared about him and cared for him very well.”

There were some challenges along the way. “The variable schedule could make it hard with so many different PSWs coming at different times each day. If a new PSW had to come at 7:00am, then I would get up at 6:00am to have everything ready. Each time there was a new person introduced to our care, it meant having to review the routine again.”

Caring for Ken and coordinating various visiting caregivers and medical appointments was becoming more onerous for Liz. Ken’s periods of delusion and hallucinations were particularly worrying their daughter, Alex, who lived in Toronto and could provide some support. Their son, Andrew, moved home from England to help his parents cope.

“Our family doctor’s office linked us to resources that were very helpful. A geriatric nurse would come to visit, as well as a social worker,” says Liz. “They were all very accommodating by coming to our home because it was getting harder for Ken to get around.”

A doctor who specializes in pain management continued to care for Ken after he was discharged from the hospital. He was comfortable managing the level of narcotic medication Ken needed and he prescribed what was necessary and even tried other strategies to reduce some of the narcotics.

Through Ken’s illness, Liz experienced her own health problems. First, cataract surgery, which precluded driving for a period of time. Knee replacement surgery required time in hospital, and weeks of rehabilitation and not driving. More recently, a heart condition required Liz to undergo an angioplasty.

“We booked Ken into a retirement home for four weeks in the fall of 2016 while I had surgery and my knee healed, without fully realizing the level of support that he would need while living away from home. Towards the end of his stay, he had a fall and contracted an infection that necessitated weeks of nurses visiting our home. That was a real eye opener for us.”

Liz describes moving through 2016 and 2017 as “coping at home”. Between the care they were receiving from the WWLHIN and Ken’s twice-a-week participation in a day program in Fergus run by St. Joseph’s Health Centre, there was some respite for Liz, but Ken needed more care.

In 2017, Liz and Ken along with Alex and Andrew made the decision to prepare for long-term care.  Ken’s name had been on the Community Care Access Centre/Local Health Integration Network eligibility list since his discharge from Groves in 2016. “We were told it would be quite some time before a bed was available, but to our surprise, in January (2018), we got a call that there was a space for Ken at Wellington Terrace in Fergus,” says Liz.

Although all the stars seemed to align for Ken to secure a spot so quickly, Liz hesitated. “Ken had recently shown a significant cognitive improvement. None of us knew why. So I wondered if I was doing the right thing.”

Refusing the spot would mean starting over on the waiting list.  Liz and Ken made the decision to take the spot and move forward.

“We are so fortunate that Wellington Terrace was our first choice. Just yesterday, we were sitting in the pavilion watching the birds. It’s a beautiful facility, and I can bring him home for a couple of nights every week if he chooses,” says Liz. “He knows that he needs to be there. He feels safe there. He feels well cared for. It’s likely kept him out of the hospital. He knows that I’m nearby, and I can spend time with him every day. Our time together is now easy and companionable.”

Today, Ken is 84 years old and has settled in nicely to his new surroundings. He’s able to enjoy his love of sports on TV and takes part in the discussion groups and exercise classes. When he’s home, Ken still likes to keep an eye on the gardens and direct weed pulling activities. He still enjoys talking about politics and following the latest news stories. It’s important for Ken to keep his mind active.

Liz is now 79 years old and her health is stabilizing. She’s able to enjoy time with friends and be more involved in the community, including participating in the Patient and Family Advisory Committee at the Local Health Integration Network.

“Ken’s move to long-term care has rebalanced my life. Friends have said that I have my smile back. When Ken was at home, I was responsible for running our home, no longer with his assistance; for administering his meds, all the meal preparation and ensuring his general wellbeing. I was always on my toes, listening in case something was awry. There were nights of little sleep,” says Liz. “I would like it to be different for Ken – that he never got sick, that the pain would disappear – but we’re very lucky to have what we have through the myriad of supports provided by our medical system. Compared to the situations that my parents faced in their old age in the 1980s, this is a different world.”