Mornings with Ted: A Caregiver’s Story

Parents of young children will immediately recognize the morning routine at Ruth and Ted Simmons’ Hamilton home.

While Ruth makes breakfast, she checks in on her husband to see how he’s managing. When Ted finally comes into the kitchen, sometimes he’s dressed, sometimes not. Some mornings he’ll be pleased with what she’s made for breakfast, others he’ll complain.

And when it’s time to leave the house, he may need to be reminded of where they’re going.

Ted, 79, has Alzheimer’s disease.

“I call the whole process we’re going through right now backwards kindergarten,” says Ruth, a retired teacher. “He’s unlearning things about the same order and rate as my kindergarten kids learned them.”

He’s not just being difficult

Ruth has worked hard since Ted was diagnosed in 2005 to learn all she can about his illness. He first began showing symptoms by missing appointments and making significant banking errors. She’d get angry with him.

“I didn’t know what was going on and it made me really mad,” she recalls. “I’d say, ‘Listen to what I’m telling you.’ But I didn’t know his brain wasn’t working. I thought he was just being difficult.”

Ruth, who speaks regularly at community groups about what it’s like to care for someone with Alzheimer’s disease, says she can’t stress this point enough.

“They will blame you for things. If you take that personally, you’re a basket case all the time. That’s Alzheimer’s. That’s what they do. What a difference it makes when you know what’s going on.”

It’s OK to be overwhelmed

Ruth is also a strong advocate of community programs for caregivers: “Get help. Get all the help you can get,” she says.

A personal support worker visits their home nine hours a week; Ted attends an adult care program at the Alzheimer Society of Hamilton-Halton three times a week, and when she needs it, Ruth uses overnight respite care.

Their four children and Ruth’s brother also pitch in.

Last summer, she and her children visited local long-term care homes, picking out two they thought would suit Ted once the time comes. Ruth wants her husband with her as long as possible, but she has accepted there will come a day when she’ll need even more help.

“You need to recognize your inability to do it all,” she says. “But you know what? We tend not to do that, so we break down. It’s OK to be overwhelmed. It’s not OK to be a superwoman.”

Are you someone caring for a family member or friend with Alzheimer’s disease? Find help at the Alzheimer Society:

Next page: Caregiver tips to avoid burnout

Time out for caregivers

If you’re a caregiver like Ruth Simmons, you may be so busy looking after a family member that you neglect to take care of yourself. A time-out is important not only for your physical health but also for your emotional and mental well-being. Try these tips to avoid burnout:

•  Help – be honest with yourself: ask for help when you need it

•  Allocate – delegate tasks to others; make a schedule to keep track

•  Balance – get adequate sleep, exercise regularly and eat healthily to relieve stress

•  Indulge – do something you enjoy just for you

•  Socialize – stay in touch with friends and family to perk yourself up and alleviate feelings of isolation

•  Health – be aware of signs of physical or emotional stress and have regular checkups

Where to get help

From support groups to practical coping advice, your local Alzheimer Society can help recharge your batteries and guide you towards the right programs.

•  Adult day programs: an opportunity for people with dementia to socialize and participate in activities and outings.

•  Caregiver support groups: meet and exchange tips and information with other caregivers and learn about other helpful local resources.

•  Respite care: Short or long-term overnight stays provide a temporary break from your caregiving responsibilities.