Grief and guilt companions on the Alzheimer’s journey

Linda Wiebe still finds joy in the smallest moments. But more than five-and-a-half years after the Alzheimer’s disease diagnosis of her husband Herb, the things others find small are very important indeed.

Herb is currently in stage 7 of Lewy body Alzheimer’s Disease. The final stage of the degenerative brain disease that causes gradual death of brain cells and connectivity, it’s led to his residence at Rest Haven Care Home.

Stage 7, as outlined by Dr. Barry Reisberg, clinical director of New York University’s Aging and Dementia Research Centre, essentially means he has the same capabilities as an infant.

The final stage of the disease includes the loss of the ability to walk, inability for the brain to control the body and generalized rigidity of neurological reflexes.

What it means for Linda is that Herb spends most of his time, upwards of 90 percent she estimates, unable to even recognize her as she arrives to help feed him his lunch and supper.

But there are moments.

“The other day he said, “Oh hey sweetie,” she said.

Other days it’s more subtle signs.

“You can tell in his eyes,” she said. “There’s little verbal communication that makes sense but his eyes, the way they light up when he recognizes me.”

“It just makes my day,” she added. “It is the most incredible feeling.”

Wiebe’s made no secret of her husband’s condition. In January 2021 she talked to The Carillon about their journey that had begun several years earlier.

She said Herb had always said to share their story if it could help others.

Herb has a background as a local floor installer and before that a pastor and missionary. In 2016 he began making more mistakes at work and double booking himself.

The battle to find a diagnosis took time. During that 2021 interview, Herb was being cared for at home, with caregivers being employed through self-managed care.

Now at Rest Haven, Linda said she appreciates Dr. Reisberg’s explanation of what the different stages mean.

“I find that most people are not educated on how the stage correlates with age and then it gives people a much better understanding,” she said. “Herb right now is in Stage 7, so he needs full care. He’s like an infant to a 15-month-old.”

Herb sits in a Broda chair and needs to be fed; a task Linda continues to do.

“He doesn’t always recognize me,” she said. “He stares into space. His delusions and hallucinations have escalated and that is part of the Lewy body dementia.

A type of Alzheimer’s, Lewy body dementia is caused by abnormal deposits of a protein called alpha-synuclein in the brain. Those deposits, called Lewy bodies, affects brain chemistry where it creates problems with thinking, behaviour, movement and mood.

Herb entered into Stage 7 in the fall of 2024. Prior to that, Stage 6 was equal to the ages of two to five.

“Up until that point I was helping with a lot of his care and at that point he rejected anything that I tried to do,” Linda said. “Part of it was he didn’t know who I was anymore.”

Giving up his care over the years has been difficult.

“I had to learn how to let go and surrender his care to other people,” she said.

As they ventured through the stages, they discovered new issues.

Linda said at Rest Haven they had to cover his mirror and make sure his blinds were closed to prevent him seeing his own reflection.

“He doesn’t know who he is,” she said. “He thinks there’s another person in the room.”

Changes were noticed at meal times when he would pour his drink on to his meal.

“It’s hard because you watch this person who was so capable just begin to lose,” she said, “But when you understand that Stage 6 is between two and five, it kind of helps you to make more sense of that.”

Linda said they’ve been married for nearly 48 years.

“I love him so much and I’ve cared for him so long,” she said. “I know at first, because he was a pastor and a missionary, having someone else take off his clothes and help him shower has been a massive struggle for him.”

Guilt and grief continue to play a role in Linda’s life.

After the death of her sister, Linda was gone from Steinbach for close to eight weeks.

“He didn’t even notice I was gone,” she said.

That doesn’t stop Linda from doing whatever she can. A recent purchase of a toy intended for babies has given Herb something to do with his hands.

Called the “funny puller” the toy helps him keep his hands occupied. But unlike the intended recipient of the toy, Herb is still very strong and has already broken off one of the parts.

He also has to be watched as he likes to suck on objects. Linda said someone had left poker chips out and they found three of them in his mouth.

As Herb advanced through the stages, Linda had to make changes to managing his care. She said a message from her sister earlier on in the journey helped make sense of it.

“The progression of the disease is making the decisions for you,” her sister wrote. “You are responsibly reacting to the changes to maintain safety and dignity for your loved one, yourself and the caregivers.”

But guilt and grief are still constant companions for Linda who said at the beginning of the journey guilt was the predominant feeling, but grief has slowly risen through the process.

“When we got him in the home there was a sense of relief that he was going to be safe, but it just brought with it a whole new set of emotions,” she said.

It also came with some real-life consequences.

Linda was forced to sell her home and most of her possessions to pay for his ongoing care.

With her children in Texas and Denmark, much of the work fell on her.

Finding it difficult to concentrate at work, Linda made the tough decision to retire, moving to Woodhaven so she could live close to her husband, visiting him without having to go outside.

She has a support network including the Alzheimer Society of Manitoba and a group of friends who also have spouses at Rest Haven.

“It has been transformational,” she said of their monthly meetings. “It’s funny how sometimes we just need someone to give us permission.”

That permission is for self-care, for visiting other family members that may be out of town or taking a break when it’s needed.

“It’s hard to put yourself first,” she said. “Self-care is something that typically doesn’t come easy. We’ve always been caring for our spouses or our kids, and it’s hard to now try to put yourself first.”

It’s also hard to prepare for the future. Herb remains a physically healthy and strong man, and while Linda said people with dementia often pass from issues like pneumonia or strokes, there’s really no clue as to what can happen next.

“I don’t know if he would be around next year at this time. I just don’t know but I’m more at peace with it,” she said. “I think the letting go at first, I felt guilty about even doing it. You know what’s coming and you need to be strong at that time.”

She said others beginning on this journey should get support from family and friends including people they can vent to as needed. They should secure power of attorney, have a health care directive, and an emergency plan in place.

“Understand that the rejection, the distrust, the aggression, all of that is part of the disease and again get into a support group where you’ll get validation, understanding and permission to express yourself,” she said. “Be kind to yourself. I think we’re very hard on ourselves as caregivers.”

She urged people to contact the Alzheimer Society of Manitoba as well.

Linda added that people who work in Rest Haven and other similar facilities should be applauded.

“I feel like they don’t get enough respect or appreciation,” she said. “When you have a husband who’s over 200 pounds and almost 6’3” and he’s a baby, you realize just how thankful you are for staff.”