Caregiver of someone who lived with Alzheimer’s disease encourages people to reach out for help

It’s only now, six years after his wife Solette died, that Lawrence Gelberg can find the humour in the stories she told and the situations he found himself in all because his spouse lived with Alzheimer’s disease.

“It’s funny now. Then I had a horrible time.”

Gelberg said it was hard to find the humour in what was happening when he was providing care to his once busy wife who was now content to sit in her chair all day, watching the news – and telling him all about it over and over - while eating toast with jam and drinking coke.

Providing care for someone living with dementia is exhausting, stressful and often lonely as the relationship with the person with dementia has changed and the people who surround caregivers often don’t know how to help. And while Gelberg said his friends sympathized with his situation, they never really understood.

No one could, Gelberg said, “unless you have lived with a person with Alzheimer’s disease for 24 hours.”

Gelberg said it took him about a year to realize that something was wrong with Solette. She was repeating things and had got lost a couple of times while driving. He went to their doctor who referred them to the geriatric clinic at Mackenzie Health where Gelberg said Solette was given a simple test.

“It turns out for her it wasn’t a simple test. She couldn’t do it.”

Solette was diagnosed with Alzheimer’s disease in 2013 and died of complications of the disease in 2019.

Solette had an “eclectic” career, graduating as a teacher at a time when those jobs were hard to find. She worked in market research, was a stay-at-home mom to daughters Jane and Jessica, sat on various boards and was an executive director for several organizations including the Canadian Educational Standards Institute. She ended her working life as a substitute teacher, 50 years after graduating from teacher’s college. Gelberg said his wife loved to read and sew – she made her own clothes – and did needlepoint.

“She was a dynamic person, ironic because of Alzheimer’s disease she went 180 degrees. She became very passive.”

Once Solette was diagnosed, their doctor suggested Gelberg reach out to the Alzheimer Society of York Region (AS York) for support. Gelberg was connected to a social worker though AS York, who provided support and a listening ear.

“Ellen (Houser, who is now retired) was wonderful. Ellen was always there when I needed her.”

Houser connected Gelberg with programs and services including a caregiver support group.

“Ten people showed up to talk about their situations. It was a tremendous group. You learn that you are not the only one in this predicament. When you are living it, you think you are.”

Gelberg also learned things can often be worse.

“You began to realize that there were people worse off than I was. I also realized I was not in the wildness all by myself. There were people with similar problems. We helped each other.”

AS York provides webinars for caregivers and seminars, including one about financial planning, which Gelberg attended despite the fact he was an accountant for 57 years. While there, he got talking with three women whose spouses were also living with dementia.

The group hit it off and “for a number of years the four of us met once a month for at Starbucks” where they would talk about caring for someone living with dementia.

“Until you live with this, you can’t understand what it’s like,” Gelberg said. “I really think caregivers need support. (Dementia) is horrendous. It just wears you down. Some days it feels like you are at the end of your rope.”

But with help from his social worker, his support group and his fellow caregivers who understood exactly what he was going through, Gelberg said they gave him the strength to keep going.

 “You need to find support. You can’t do this on your own. It will destroy you.”

Gelberg said it’s important for caregivers to reach out for support. He encourages anyone on the dementia journey to connect with AS York for support.

“It’s important to know someone who can guide you. AS York was a big help to me.”

 

National Caregivers Day is April 1

National Caregivers Day is April 1. The day is “an opportunity to acknowledge the vital role of caregivers and ensure they feel supported and valued,” said Carers Canada on their website.

The Alzheimer Society of York Region is hosting a webinar on April 1 between 1 p.m. and 2 p.m entitled "Caring for the Caregiver".

Jaime Cruz, AS York’s Community Programs and Public Education Manager will be presenting on:

1. What dementia looks like
2. Challenges caregiver experience
3. Programs and support at the Alzheimer Society of York Region and in the community
4. Tips and strategies to support caregivers
5. How you can help keep a person living with dementia safe in the community

To register please visit: https://bit.ly/CaringfortheCaregiver2025

 

More resources:

Important things to know.
Caregivers:

1. Often feel alone and isolated from friends
2. May need help, but are often reluctant to ask
3. Are often unable to do errands or complete household tasks
4. Experience stress that sometime affects their health
5. Need regular breaks from caregiving
6. Need someone to listen

 

Ways to help caregivers:

Take the time to listen

Let the caregiver know you are available to listen when they feel overwhelmed and need to talk with someone

Do little things – they mean a lot

If you’re on your way out to do an errand, call and see if the caregiver needs anything.

Give the caregiver a break

Offer to visit with the person living with the disease. Encourage the caregiver to spend time on a favourite hobby, run some errands or spend time alone.

Provide a change of scenery

Suggest an outing to the park or a visit to your home. Whenever possible, include the person with Alzheimer’s disease in the outing. Choose an activity that everyone will enjoy.

Keep in touch

Maintain contact – a phone call, card, email or visit mean a great deal. The disease has an impact on all family members – spouses, adult children and even young children. Be attentive to their needs too.

Stay the course

It is a long journey for caregivers. Any support you can provide along the way will be appreciated.

Become informed

Learn about Alzheimer’s disease and how it impacts the person living wit the disease and the family.

Contact the Alzheimer Society of York Region’s public education team for more information at (905) 726-3477