Those who care for long-term dementia patients are expected to do the impossible
Posted on April 13, 2026 in Child & Family Delivery System
Source: TheStar.com — Authors: Caroline Andrews
TheStar.com – Opinion/Letters to the Editor
April 13, 2026. Caroline Andrews, Toronto
Mom, 96, left in filthy Toronto home was ‘petrified’ of going to hospital, testifies daughter, 73, April 8
Many readers may think Eva Samonas is an awful person for failing to provide a better home for her mother and for not getting her mother into hospital or long-term care long before she ended up naked and in pain on her floor. But those who have been the sole caregiver of a person with dementia for years will understand that it just isn’t possible to always do everything perfectly.
Sometimes it’s all too much: the family members who refuse to get involved or who only criticize without any concept of the real problems, the government that says it will provide help but doesn’t offer anything you really need, the long-term care situation which terrifies not only the patient but you yourself, if indeed you could get around the six plus year waiting list.
You have to deal with a patient who is no longer the person you loved, who is critical and demanding and will not do whatever is in their best interest, like taking medication or seeing a dentist. A patient who might even be violent. Even if it’s minor it still affects you. The criticism is the worst because every long-term caregiver I’ve talked to has gone out of their way to provide the best they can do with little or no positive reaction at all from the patient.
You keep doing your best out of remembrance of the person the patient no longer is or out of the guilt you know you would bear if you walked out on them or put them into the hospital or long-term care that they emphatically resist going to.
The government and hospitals can be obstacles. For instance, many programs require a doctor’s referral but if the patient has refused for years to see a doctor what do you do? People with dementia may often act like toddlers but they can’t be picked up and taken to the doctor.
If you’re lucky your patient might retain a calm and co-operative personality and/or you can afford to get them into a good and supportive place to live. These are not options for many caregivers.
The condition of the house might seem horrific but just think of what would be involved in cleaning it up when you are already exhausted and overworked. Arranging medication and social stimulation, researching long-term care options, cooking, listening and changing diapers takes time.
Caregivers need more help than they’re likely to ever get from our government. The long-term care situation needs to be fixed so there’s enough of it and it doesn’t terrify anyone thinking of putting a person they once loved into it. But this isn’t likely to happen. In fact, it will probably get worse.
Non-Alzheimer’s dementia can last for decades. Imagine 20 or 30 years catering to, feeding and cleaning someone who doesn’t appreciate (and often doesn’t want) your help. Even five or six years would be exhausting. Eva Samonas didn’t provide her mother with the perfect care and environment, but, realistically, what could you do in her situation?
https://www.thestar.com/opinion/letters-to-the-editor/those-who-care-for-long-term-dementia-patients-are-expected-to-do-the-impossible/article_4c9c00c7-b430-444a-9313-4d269f42891a.html
Tags: disabilities, Health, Home Care, mental Health
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