Boomerangst: Turning Dilemmas Into Discoveries – Caring For A Loved One With Alzheimer’s

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Dementia can be isolating for caregivers. Here, how to reach out for support.

Q. I’m coping with early stage dementia that my partner was diagnosed with a year ago. I would love an email friend in the same situation to trade tips and gripes with. I’ve been looking but all I can find are message boards. I can’t seem to find anyone who provides this service.
Jacky, London, Ont.

A. Your first step might be to call the local branch of your Alzheimer Society to see if they can connect you with someone in a similar situation, then you could take it forward on a personal, informal basis on your own time. Or, you could look into joining a more formal support group, which also has many known benefits. “Fear of the unknown is very common in caregivers,” points out Kathy Hickman, Education Manager at the Alzheimer Society of Ontario, and she applauds your efforts to connect with another caregiver. “Having someone else tell you what they’re going through can really make a difference in reducing the feeling of isolation.”

When caregivers participate in support groups, or education programs with other people in similar situations, real bonds develop, important information is shared and most people come away feeling less alone. “A diagnosis of dementia, especially early on, can be devastating,” says Kathy. “It’s such a huge shift for people. It’s easy to become isolated because of societal misconceptions and fear of the unknown. Even the most educated person can find it really difficult.” (As it happens, January is Alzheimer Awareness Month and this year’s theme is ‘the benefits of early diagnosis’.)

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According to the Alzheimer Society, it’s estimated that by 2038 the number of Canadians with dementia will more than double to over one million people from the current 500,000, which means programs and support will be even more in demand.

Looking after a loved one with dementia can quickly become overwhelming without help, whether that comes through family and friends or a more organized type of support. Kathy emphasizes the importance of informing family and friends of a dementia diagnosis so they can understand what’s happening, adjust their expectations and offer support – even if they don’t know exactly what form that will take. Sounds logical, doesn’t it? Yet many caregivers feel compelled to hide the truth, to try and protect the dignity of their loved ones for fear they’ll be judged, misunderstood or perceived as less than they once were.

And caregivers themselves experience complex and conflicted feelings – including guilt. Sharing instead of burying them is beneficial in so many ways. According to the Alzheimer Society of Canada, “It’s quite common to feel guilty—guilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.”

Here’s hoping you can connect with someone to exchange experiences. I wish you strength and support in your challenging journey.

Send Diane a brief description of your dilemma, along with your first name and where you live, to [email protected]

A professional journalist for more than 25 years, Diane Sewell has written for some of the top newspapers and magazines in Canada and is a baby boomer herself. Her new blog “Boomerangst: Turning Dilemmas into Discoveries” is interactive with readers and focuses on life issues – like aging, dating, second marriages, sex, death, family and fashion. Diane will use her expertise to find the right expert to help solve your predicament, unearthing kernels of truth and quickly getting to the heart of the issue.