Real story: Supporting a loved one with osteoporosis

Living with painful fractures caused by osteoporosis can be life changing - not only for the person living with the condition but for their loved ones, too.

Here at the ROS, we speak to many friends and family members who don’t see themselves as ‘carers’, just people who are trying to do the best they can for the person with spinal fractures and navigate through each new day together.

We spoke to a member from Scotland, who has osteoporosis herself and a few years ago played a crucial role helping her husband recover from multiple fractures due to the condition. Here, she shares her personal story alongside some practical insights.

“At the beginning, I was frightened, very frightened. I didn't know what was happening, why it was happening or where it would lead, and my ignorance fuelled my fear.

“I was also pretty angry at myself, because as someone with osteoporosis, I felt that I could have been more aware of the problems that steroids (the standard treatment for polymyalgia rheumatica) could lead to for my husband.”

Assessing the risk

“When my husband came home from hospital, I was utterly absorbed by caring for him, trying to help him cope with the pain and minimise the risk of further injury.  I needed to support him emotionally and physically. One of the curious things about these fractures, though, is that it can be difficult to tell if you’re improving.

“That can be stressful for the onlooker because they don't actually know if the person is getting better. I mean, there are some rather obvious signs - if the person is able to walk, then clearly things have improved - but it's very difficult to assess risk.

“There's a peculiar kind of anxiety that comes with that, always feeling unable to tell if new activities are safe or know if the person can do the things they used to do. Once I found more information, I felt much more able to face the facts. There is nothing like information for helping you feel a little more in control.”

Preparing for change

“You have to prepare yourself for the sadness of seeing someone you love change. This isn't talked about much, but when someone whose range of movement has never been in question seems to have great difficulty doing very normal things - reaching a certain shelf, doing certain everyday movements - it's very painful to see.

“You have to get practical when this hits you. So, ask yourself questions. For example: can the person get to the bathroom during the night? What aids will you use? How far will you help them in their attempts to walk and regain mobility? Are they able to deal with their own medication? What about dressing? What about safety in the shower? Is there a comfortable position for eating? These are all really quite basic things that you're confronted with.”

The importance of self-care

“I quickly learned that I needed to do things for myself if I was going to help him, so I made some time for that. It was also very useful for me to have friends of my own that I could talk to and who were very supportive. I believe that you are better able to look after a loved one if you are in a buoyant position yourself.

“You need to look after your own physical wellbeing in all sorts of ways, making sure you don’t just exist on cheese sandwiches and insufficient sleep, which is all too easy to do if you are anxious and worried.”

There is nothing like information for helping you feel a little more in control

A difficult balancing act

“Spinal fractures bring with them a very special sort of vulnerability for the person that has them. But the onlooker is very aware of this as well. Because of the vulnerability and the risk of further injury, your instinct is to protect. But, of course, protection isn't always the right response.

“I find myself in a constant balancing act. Too much help can be quite undermining. It may even be a bit humiliating. So you've got to temper your own instinct to be there and to protect in order to help the other person with their recovery.”

Final thoughts

“The person who is injured often finds it very difficult to have perspective to be able to assess their own improvement. But the person who observes is much more able to see that and to give them hope.

“I learned too late that osteoporosis affects men. I think it's been under-emphasised and it's very important that we catch up with that.”

5 top takeaways

1. Get on top of the pain. If pain is the problem, then the energy isn't going into the person's recovery.
2. Keep moving every day.
3. Set incremental goals, even if they’re very tiny.
4. Seek good, professional advice about exercise.
5. Try to get the injured person back to doing some of the things they enjoy.

More information

If you or someone close to you is adapting to life after fractures, help is at hand.

The ROS provides a whole host of information and support services if you have had fractures or are at risk, including fact sheets, local support groups, online information events and our specialist nurse Helpline on 0808 800 0035.

Read our fact sheet, Caring for someone with fractures, or watch our Bone Matters session on 'Supporting a loved one after a hip fracture' here.

If you want to learn what further support might be available in your area, visit Carers UK and if it’s affecting your ability to work, check what benefit entitlements you might be eligible for now.