In sickness and in health

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Couples face the challenge of separation when illness strikes

Tiffany and Paul were vacationing in Arizona when the stroke hit.

One second they were enjoying their yearly hibernation practices – namely golfing, south of the border – the next Tiffany was at Paul’s bedside in an intensive care unit watching her husband fight for his life. (Their names have been changed for safety reasons because Tiffany lives alone.)

Paul spent two weeks in the American hospital before being flown to Edmonton via air ambulance, then another three at the University of Alberta hospital, before being transferred to the Youville Home in St. Albert.

Tiffany was relieved when her husband was finally moved to the long-term care facility.

“I was happy to have him close to home,” said Tiffany, who just returned from a trip to Arizona to visit her sisters.

She was gone five days. That’s the longest she will spend away from her husband, despite hiring a helper to care for him during the day.

Tiffany visits in the evenings and on weekends. But for the first few years, she spent her days in and out of the Youville, visiting Paul when he was awake, going home when he was resting.

“I didn’t feel good not being here,” she said.

For Penny and Ed Stiksma the shift from living together to apart was less sudden. Penny was diagnosed with multiple sclerosis shortly after they wed, 47 years ago.

Even so, the transition was no less painful.

For years Ed cared for Penny, doing little things for her, like lifting her into the car when she could no longer do it herself.

Their house was designed with her condition in mind. An open concept, it allowed for her to move about freely, first with a manual wheelchair then an electric one. They still spend a few hours every week in their home. It gives them a sense of normalcy.

For Ed, the Youville has become like a second home. It’s where he eats his meals with Penny and spends the majority of his days.

A little more than five years ago, Ed was diagnosed with a type of muscular dystrophy. He is still able to live independently, but was no longer able to care for his wife at home.

The ordeal is still not easy for Penny to talk about.

“I was very angry and upset. I was 62 when I came here. I was a lot younger than most of the residents. I was very upset not being home. I still don’t feel 100 per cent with it, but that’s the way it is,” she said.

The couple tries to be as active as possible. Ed bought a modified van that allows them to go on outings to the mall, the theatre, and the country without Penny having to leave her wheelchair. But she would rather be at home.

Fred and Anne Fowler lived in Vilna, Alta., at the seniors lodge for two years before transferring to the Youville in St. Albert together.

He was diagnosed with Parkinson’s disease and could no longer upkeep the family home in St. Paul and she was suffering from dementia.

Their double room, festively decorated for the holidays, used to consist of a seating room and a bedroom, with both single beds pushed together as one. When Ann’s needs became more complicated, her bed had to be moved to the other side of the double room.

Although she sleeps less than 10 feet away, it broke Fred’s heart not to be able to share the same bed as his wife. Especially after losing the ability to converse with her.

This is probably the hardest adaptation for Tiffany and Paul as well.

At first Paul could only move one hand. He had lost all other control over his muscles, as well as his ability to speak.

Slowly he regained strength in the left side of his body. “He’s very athletic. He’s quite capable of doing a lot of things with his left hand. He was almost ambidextrous – he could catch, throw and he played golf left-handed. That has served him well. I think that’s been a saving grace for him,” said Tiffany.

With the help of a speech therapist the couple learned to communicate non-verbally, through sounds, headshakes, nods and pointing. Tiffany can also read the emotions in his eyes.

Not being able to speak, to share his thoughts and opinions is frustrating for Paul, a successful retired businessman who is “still smart as hell,” said his wife.

Transition

The transition from home to long-term care facility is one that many Canadians will eventually face. But more and more, it’s not one that is being faced alone.

According to a 2013 report by the provincial government, the majority of older adults – at least 75 per cent – enter older adulthood in a couple family. Another report prepared for the Alberta Medical Association in 2015, shows that 17 per cent of caregivers are spouses.

As our population ages and modern medicine continues to extend the average life expectancy, more couples are living to a ripe old age together. But with four per cent of older Albertans needing long-term care, this often means they aren’t living together at all.

Before taking on the role of site director for Holy Cross Manor, a Covenant Care-run supported living facility in Calgary, Tim Bowen worked in the private senior’s lodging sector. He said the worst part of his job was transitioning residents who needed care.

“Usually the couple had to be split up, which is always a harsh thing for people who have been together for 50 to 70 years and all of a sudden they have to be split up because one needs care and the other one doesn’t or they just don’t have space for two people,” said Bowen.

“It’s not a good situation. It’s sad actually.”

In Alberta only those who need a higher level of care – aid dressing, showering and using the washroom – can access a long-term care facility like the Youville. Unless there is a need demonstrated on the part of the partner, living together is no longer an option.

This, often sudden transition, is painful for seniors said Bowen, who have already suffered a lot of loss in the last few years of their lives.

More and more public and private senior’s care providers are realizing that there is a greater need and demand for facilities that allow couples to stay together.

When Holy Cross Manor opened in 2014 it introduced a new type of supportive living facility called couples suites, which allows for both partners to live together even though one requires care.

Bowen said the decision was made in recognition that married seniors experience many health and psychological benefits when they can continue living with their spouses.

Currently, these types of accommodations are rare. But facilities such as Youville do their best to accommodate when partners are admitted to the same facility said Covenant Health spokesperson Rayne Kuntz.

“As seniors age, they lose everything. Their health is going. They lose their friends – to death; their family members. They lose their driving. They lose their home. And then they lose their garden. It’s one loss after the next and then if they finally then lose the ability to remain with their spouse that’s a huge loss. The emotions run very deep when you start to deal with loss of spouse,” said Bowen.

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St. Albert Gazette

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