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PAM FRAMPTON: Harold and Barbara — two lives in the balance

Harold Hefferton holds a photo of he and Barbara taken in Halifax at a travel or tourism event years ago. —
Harold Hefferton holds a photo of him and Barbara taken in Halifax at a travel and tourism event years ago. — Pam Frampton/The Telegram

When one spouse moves into long-term care, the other starts down an unfamiliar road alone

Part 2 of 2

“Till I see you again
May our song never end
Till then remember this is not goodbye”
— “This is Not Goodbye,” Johnny Reid

Most loving couples don’t want to live apart.

So when Harold Hefferton brought his wife to a long-term care facility and then went back home alone, he was tortured with doubt.

Barbara’s Alzheimer’s had progressed to point where she needed constant care and he, a 70-year-old retiree, felt tired and defeated.

He knows she’s getting the care she needs, but it doesn’t spare him from bouts of caregiver’s remorse.

“I don’t feel guilty in the big picture,” he said during an interview at his St. John’s home last week. “But sometimes I do feel like I’ve thrown her to the wolves.”

Harold cared for Barbara for years until she required more than he was able to give.

He’s talked to a psychologist and knows there was no perfect time to move his wife, now 68, into Pleasantview Towers, where he says she receives excellent care.

“The thing I sat down and reflected on is, is the pain going to be the same whenever you do it? There’s never a right time, there’s never a wrong time. It just becomes the time.”

He has supportive family and friends, but says no one knows how heart-wrenching the process is unless they’ve been through it and found themselves in the same sort of bleak emotional limbo.

It is like confronting death, without the finality of death.

“But you do have to grieve,” he says. “You can’t bottle it up. It is a loss. She’s not coming back. … You have no one to plan anything with, to say, ‘What’s on our bucket list?’ … The hardest thing people don’t realize is that at the end of the day you have no one to share anything with.

“It’s a very lonely road. There’s no closure. You can’t move on.”

“The thing I sat down and reflected on is, is the pain going to be the same whenever you do it? There’s never a right time, there’s never a wrong time. It just becomes the time.”

There’s also the constant questioning of whether you’ve made the right decision for your spouse, for yourself.

“You ask yourself, am I playing God?” Harold says quietly. “Because you may be shortening their life, because you know those long-term care places — as good as they are — are not giving the same quality of care you were.”

He has warm praise for the professionals caring for his wife, and he finds it beneficial to attend Alzheimer’s Society family support groups, where he can talk to people navigating similar paths. He also finds useful information on the website Alzheimer’s & Dementia Weekly (www.alzheimersweekly.com/), and chats with a geriatric medicine specialist occasionally.

He said people are often quick to offer words of moral support, but they should follow it up with action — a social outing or a shared meal, for example.

“People don’t always know how to react,” he acknowledges. “They say, ‘I’m as close as your phone.’… But they need to be proactive.

“Don’t be afraid to ask for help. I would’ve struggled more if I hadn’t. … And keep your lights turned on no matter what time you go out, because there’s nothing worse than coming home to a dark house.”

Harold is a eucharistic minister at the Anglican Cathedral in St. John’s, and says this experience has strengthened his spirituality.

“I had to think a lot. Ask questions a lot. My faith has been severely tested. … You seek for a better understanding.”

He says couples should talk about what they would want to happen if one of them became debilitated by illness or injury, while they are both still well.

“Always remember there are two people involved,” he says. “Music and humour are important. Laughter is therapy.”

Harold and Barbara share a love of Johnny Reid and saw a couple of his concerts. Before Barbara moved into long-term care, whenever Harold would play a Johnny Reid video she’d want to put on a fancy dress, in a flash of cognitive clarity.

And there are still good days. At a recent pub night at Pleasantview Towers, Harold said Barbara sang and danced like old times.

“Now doctors and others say I can return to being her husband (instead of her caregiver.) But now I feel like I have turned to an advocacy role. Now I have to make sure she gets the best care she can…

“I just hope and pray she has some peace. And I hope and pray that someday I have some peace. But I’m not there yet,” he said.

Still, when he visits and they have some private time, and he plays her favourite songs on his phone, she’s like herself for a time.

“She was sweet. She is sweet,” he says with a smile, remembering.

Read Part 1

PAM FRAMPTON: Harold and Barbara — a fork in the road

Pam Frampton is a columnist whose work is published in The Western Star and The Telegram. Email pamela.frampton@thetelegram.com. Twitter: pam_frampton

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