Story on respite care was timely

Thank you for your excellent article on Alzheimer’s disease (strokes, etc.,) and caregivers.

I, too, am a 24/7 caregiver and have been for four years for my husband who had a severe stroke in 2013. He is paralyzed on the right side and is unable to speak. I have a friend who I met at hospital who has been doing the same for seven years and my sister-in-law is still looking after my brother who suffered a severe stroke in November 1994.

Definitely respite has been a significant problem for all of us. I currently get three hours per week provided by CCAC and another three hours per week from the Companion Care program which I pay $6.50 per hour for. During the four years I have had 20 days off where I was away, mostly a couple of days at a time provided at $20 per hour. A few of those times my sons stayed from 7 p.m. to 7 a.m. to help reduce the cost.

I also am power of attorney for my mother-inlaw who is in a long-term care home. My husband is an only child so there is just me and she is palliative now. There have been broken hips, injuries, medical issues of all sorts and she has dementia. I use some respite time to visit her as well.

There are apparently 14 respite beds available in Niagara but also a long waiting list and not all are suitable depending on one’s needs. My husband cannot be involved in the day and stay program at Linhaven because he is not able to take himself to the bathroom, which is a requirement for the program. I understand the overnight respite component is very good there, so that is very unfortunate for us.

I have checked with a few of the private facilities and they will not book ahead so you can plan a week or two vacation until last minute so that they are able to book longer-term residents and some cannot take individuals who need more than minimal care because they do not have the required nursing staff.

All of these situations leave we caregivers with few alternatives. On one hand the health-care system wants family to look after their members, to avoid the strain on long-term care facilities, but they do not provide much assistance for a caregiver to succeed without taking a toll on their own health and well-being.

My husband and I have been married 51 years and I feel the same way as Angele Bell. I am trying to keep him out of a long-term care facility as long as possible. I was advised within two weeks of his stroke by the attending doctor he should go to long-term care. I did not even consider it at the time and I am so glad I did not do it, even though daily life has been very difficult at times.

Thank you for your article. Jane Burch St. Catharines