“The bottom line is fear,” says Mark Kimberley when discussing how his mother’s osteoporosis affects their lives. She may not experience that same emotion, for dementia has taken hold in recent years, but that fear is a part of Mark’s life every day.
“I obviously worry about it because if she has a fall . . .” he pauses and takes a breath.
“I’ve always been concerned about any kind of break,” he continues, “but mainly a hip fracture, because I’ve been told that if you fall and break your hip your life expectancy is generally about one year.”
When his mother was first diagnosed with osteoporosis in the mid-1990s, she lived with her husband at home and Mark was not close by. When his father died in the late-90s, however, Mark, as the only child, moved closer to home to help his mother, managing as best they could under the guidance of a respected osteoporosis medical expert.
“What I used to say at the time, after I started to research osteoporosis, is that probably without her osteoporosis specialist, my mother wouldn’t be alive,” Mark says. She saw the specialist regularly and together they managed the loss of bone density through a variety of measures.
As time passed, it became clear that living independently carried many risks for his mother, especially after an occupational therapist assessed her living environment. Mark recalls the fear he felt then, worrying that at any point in time she might suffer a fall with devastating repercussions like a hip fracture.
“She was living in her home where the only way in and out was up and down a set of stairs, which was where I was mainly concerned,” he says. She had an emergency call device in place but was reluctant to use it. As Marks says, “pride comes in to play when you have a fall and if you’re not agonizing in pain, you may have broken something and not even known it.”
Mark’s involvement continued to grow with time and by 2006, as various new health complications affected his mother, they decided she needed the support of a long-term care home in Mississauga, Ontario. There were frustrations associated with the transition, however, as they juggled different general practitioners and specialists. Mark admits he struggled at times to navigate these many changes, but he’s happy to say that today, his mother’s care is back in the hands of her osteoporosis specialist.
“If nothing else gives me comfort, at least she’s being dealt with by someone that knows exactly what to do and what to monitor,” Marks says. It’s good news that while living in a long-term care home she’s on a program of regular bone scans combined with appropriate medication, which offers some piece of mind. As dementia progresses, however, the fear that one day she’ll suffer a bad fall remains a constant reality in Mark’s life.
But knowledge can combat fear, and deeper involvement in ongoing care, especially with loved ones who aren’t always able to advocate for themselves, can go a long way. For example, Mark recently discovered that hip protectors are an option for his mother and could mitigate the effects of a fall, but until he heard team members from another long-term care home mention them he never knew they existed.
There can never be too much information available, and Mark would like to have more regular contact with the general practitioner who supports his mother in her home. As involved as he is, he’d like to see more information available to families about navigating the realities of osteoporosis, especially as it relates to other more visible health challenges, such as dementia. He says one of the biggest takeaways he discovered during an Ontario Osteoporosis Strategy for Long-Term Care meeting he participated in was the increased risk that dementia presents for those living with Osteoporosis.
It’s a painful way to live one’s final days and with all the precautions and osteoporosis treatments available, no one should ever have to do so. With more information and knowledge, fear can be replaced with action and, like Mark, loved ones of all long-term care residents should be encouraged to take on a more direct role in promoting quality osteoporosis care and fracture prevention.
Watch Mark discuss the importance of supporting loved ones with osteoporosis in long-term care.