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[Translated] I am not happy with the current nursing home system and it is a system that is focused on services and not on people. It is desirable that this changes with everyone’s help.

[translated] Centers for socializing of the elderly should be provided, for playing chess, knitting, and so on; because after they retire they are at home all day and have no communication with other people.

[Translated] Support and training for family caregivers is needed in many ways.

[Translated] I would like such surveys to be more efficient and to have more participation in them, and consequently I would like to talk and learn more about these issues in order to take action and make life easier for many individuals.

[…] When Covid came along it destroyed very important connections that enable older people in nursing homes to keep going & stay connected, to keep hope alive – the deterioration in my Mother in just 18 months was, & still is, devastating & resulted in her recent death. All those months we were unable to be by her side & keep her going, instead she wasted away as she was unable to comprehend what was going on with Covid, yet she was aware enough to know we were no longer with her. Looking through a window trying to communicate love & care to someone with dementia & who is very confused about why you wouldn’t come inside was one of the cruelest experiences. It was terrible to witness just how much our older people are let down by lack of creative, adequate, & in my opinion humane, care options because even in times of desperation when I considered taking my Mother out of the nursing home to live with me the pain of knowing that was not possible was very heavy as I knew the reality of what it had been like 4 years previously trying to care for her – lack of adequate home help, lack of adequate services – & now along now with significantly increased care needs it would have been a recipe for crisis. I became very unwell physically when I’d been involved in her care prior to her going to live in the nursing home.”

[Translated] I don’t understand why people with high income and property don’t have to pay for their own place in [residential] care homes!

[translated] These studies are interesting, but [I do not know] whether the obtained results will have an impact or be used by the competent institutions, in the direction of improving the situation with provision of care to the elderly… We have low incomes and therefore we do not have the opportunity to resign or pay for caregiver or nursing home services… nor do our parents have such pensions that can cover their expenses to stay in a nursing home, where they will live comfortably and be treated with dignity …

[Translated] I was my husband’s caregiver for 7 years. He passed away from a rare and orphaned neurodegenerative disease (PSP). When the diagnosis was announced, we felt abandoned. Then it was very difficult to find quality help even if we paid. I retired 2 years before the legal age to continue to help him. Our last and most terrible test was to have his advance directives respected. He could no longer swallow, so he could not eat or drink. He refused the gastrostomy and wanted deep sedation. I had to fight again and again to have his wishes respected. So abandoned from beginning to end!

[Translated] I care for my husband after a stroke and brain hemorrhage, which means he needs me around the clock. I would like to have a paid time off of one week once a year and my husband is well taken care of and does not feel “deported”. After all, by taking care of him, I save the state a lot of money!

My mother could afford to pay for care but we couldn’t get consistent reliable care due to the pandemic. We chose a residence but even they are limited to what they can provide and in Canada if a higher level of care is required then the person needs to go to LTC which wasn’t available at the time and she ended up staying in hospital until she passed. The government offers home supports with a cookie cutter approach; not tailored to what would make staying in her home possible. PSWs [personal support workers] to help shower and dress but no service to wash dishes. She could shower, [but] she needed help with dinner and dishes or laundry. The maximum hours [funded by the] Government is 4 hours/week not enough to sustainably stay home.