I am writing this post about falls and broken bones so that it might help other caregivers whose stroke survivor partners are at a high risk for falls and do not always realise the risks and consequences.

My husband uses a wheelchair full-time, can only stand a few seconds with assistance, and needs help with all transfers to and from his wheelchair. In the past before he had multiple broken bones from falls he had more mobility and could stand and take a few steps with assistance and could do most transfers with minimal assistance and oversight. He was also on his way to building up more strength and balance, and we had hoped he would one day be taking his first unassisted steps to walking.

Over the past 7 years my husband has had femur, tibia, fibula, humerus and rib fractures, e.g., most of the major long bones and mostly on his stroke affected side. They were either caused by falls from the wheelchair during a seizure and unavoidable or happened when he transferred or did something alone without my oversight because he was trying hard to be independent. Especially the lower leg fractures, which for various reasons were not treated well, caused him to lose a lot of strength that he is still trying to rebuild from 3 years later. Along with numerous other falls that caused cuts, concussions, bumps and bruises, they have all caused us both a lot of wear and tear and stress on a daily basis.

In the early days of strokes I remember reading studies about the highest causes of morbidity after stroke and was surprised to learn that for younger previously fit survivors falls were higher on the list than for older survivors. My husband was 47 and in reasonably good health when he had strokes caused by a twisted intestine and subsequent severe sepsis. I registered the risk of falls, made the house as safe as possible, always tried to take great care with transfers and made sure that he kept as mobile as possible with physical therapy, standing and excercising to avoid bone weakness and to gain strength. He also has help from some very trusted caregivers who we trained well and have been very loyal and conscientious about his care. Regardless, I don’t think we realised how profound the risks and consequences of falls would be until after we lived it. It is only now as I write this that my husband is telling me that no medical people had even warned him about the risks and consequences of falls, despite having over 4 months of rehabilitation. I always just assumed that he knew this, and am shocked, but also more understanding about some of the risks he has taken.

Falls happened, and have taken a huge toll on his recovery and the quality of life for both of us. There is not much that we could have done about the falls that were caused by post-stroke seizures or other situations like a faulty wheelchair that they refused to fix after fighting with them for 3 months. But for the avoidable falls, the most common thread is that he felt he could manage on his own or in one situation, me not realizing how dangerous a situation was when he was trying to help me on a household task so I could make a work deadline. The other cause was that a smaller injury like a hurt knee from physical therapy  caused him to have a bigger injury like a broken arm because of spasms or a broken rib caused a broken leg because of not having as much strength to keep his balance. In the world of strokes, smaller consequences often ripple into much bigger consequences in ways that most people just can not understand, and the list is too long to document them all.

It now makes perfect sense to me why younger or previously physically fit survivors are at a greater risk from falls. I think that the desire to do more independently and not always realising limitations can have a bigger impact than with older people, who are often more aware of their limitations, which often started pre-stroke. Looking back, I’m not sure that either of us would have done things much differently, other than making sure I was always right there in case things went amiss. That was something we both struggled with, because we both did not want him to lose all of his independence to do things without me hovering over him. There is a saying in the stroke world “Use It Or Lose It” and we have both fought hard for him to stay active and not lose his much fought for capabilities. Even sometimes when I was there things went amiss, like when I went to break a fall and he flew over my head causing injury to us both or when I helplessly watched nearby as he struggled to take twisted sheets out of the washing machine, but was not close enough to get there in time to catch the fall.

We were both previously sailors, and we always called my spotting him using the Dutch idiom “een oogje in het zeil houden” —  “keeping an eye on the sail”. Unfortunately, even with the best intentions, it just is not always possible and things happen. Coming to terms with that has been hard for both of us. Knowing that at any moment a situation can become life threatening in an instant is something that takes a huge toll on the psyche for both of us, but is something we know we are living with on a day-to-day basis and needed to adapt to.

It is also something that others don’t understand and sometimes think that I am being too cautious or too lenient about that he is just not trying hard enough. But they have never been there to see the immediate consequences, like the shock of not knowing if your partner is alive, dealing with the ambulance and hospital and the long-term toll it takes on care and overall health. Even health care providers don’t often get it, and seem to question me when anything happens, as if I might have been the cause of it. Then I often find that they don’t know how to properly treat someone who already has big mobility limitations and it’s difficult to get them to understand why a full leg cast or waiting many days for treatment is disastrous on both a health and care level for a stroke survivor and their caregiver partner.

There are also things that just happen because of the chaos of life, like when the dog runs out the door and almost gets hit by a car because someone had come without letting us know in advance as requested. That split second when your attention is away can be enough to cause irreparable harm that no amount of protection or oversight can change. And it’s not just the stroke survivor who deals with all the pain and consequences. I now have back problems because of falls, making it harder for me to give care. I also have a difficult time working because I can not always be there to catch him if he falls, and rarely can visits family or friends because of the difficulty in organising care. The financial consequences for working have been disastrous and the social consequences just as bad —   I have had one trip to visit my family in 7 years.

I’m not writing this to scare any of you or to elicit pity. I’m writing this because I think it is important to know what the consequences of falls can be. If you or your partner are ever in doubt about something being safe, it’s better to be safe “keeping your eye on the sail”. If your partner becomes frustrated with you doing that, please read them this, and let them know that although you would both like things to be different, sometimes there is just no other choice. If they still won’t listen to you, get a physio therapist or others who really understand the ramifications to make it clear to them (I am happy to help if needed). Also please feel free to have others read this, whether they be health providers who often have very little experience of the real consequences of strokes, or friends and family who may not understand why you can’t make it to a social gathering or why you are stressed leaving your partner alone to run to the shops and don’t have time to chat.

Most importantly, I’m writing this because there are times that it just isn’t possible for you to be there to catch a fall, and the inevitable happens. Although it is horrible to experience and causes a lot of pain and guilt on both sides, it’s important to realise that there are just some things we don’t have the power to protect our stroke survivor partners from or for them to protect themselves from. We still have no easy answers after 7 years, but I hope that maybe this post helps a struggling caregiver or their partner to have some peace in a situation that none of us asked for, least of all our stroke survivor partners.

Here are a few links that I will continue to add to as I rehash past research on this topic:

Fractures After Stroke 
Falls, Fractures, and Osteoporosis After Stroke
Hip fractures after stroke and their prevention