What really happens in Rehab … the good the bad & the ugly
Hey, long time no see!
Covid interrupted all our lives in so many different ways. We had just made a tree-change for a more sustainable and physically active life but I found it difficult to write my blog. I’ve started writing again and wanted to share with you some of my thoughts about re-inventing rehabilitation!
After talking with stroke survivors and reflecting on my experiences of rehab for the next Blog Post about “Co-Design of Rehab – what should Rehabilitation wards or units look like and what would make them work better for our recovery?” it seemed there was another whole topic mushed up in there.
Such as What do people experience in rehab? Which aspects of care were good, which were unhelpful or at worst, damaging?
We all have such different experiences and needs after stroke, so it’s difficult to generalise, but speaking with many of you over the years a few issues keep coming up over and again.
Not Enough Privacy versus Feeling isolated
Privacy is always important in health care and even more so the more vulnerable you are or the more you can’t self- advocate. I can remember in the first few days after my stroke I was in a four- person ward and I couldn’t speak. The doctor would come around with their Registrar and the Unit Manager. They would pull the curtain closed on one side and stand in the middle of the room, look at and discuss me. I was lucky I had family members willing to ask questions or correct them as I lay frustrated in the bed. This is about the service model not the environment.
Other stroke survivors have told me they felt uncomfortable with bedside handovers or professional visits in shared rooms in rehab because they didn’t want their, albeit friendly, roommate to hear about their finances, their continence or the argument they had with their partner about return to work. They also didn’t want to hear about their roomie’s progress and personal stuff and felt embarrassed that they did.
Sleeping in the same room as a stranger can challenge your dignity and privacy. Sharing a bathroom with someone who may have different hygiene standards, or whose partner uses the bathroom and leaves it grubby can be distressing.
Sharing a room with someone whose ‘time clock’ runs differently than yours can be exhausting. I can remember waking up at 6am one morning in my shared room in rehab because of the clanging of metal buckets and friendly ‘good mornings’ of the cleaning staff in their room across the hallway. I had finally got to sleep at 3am after my roomie had finally turned her overhead TV off. Since 9pm she had watched or slept through, woke up, watched, repeat numerous episodes of a long running TV show. Sure. They had their headphones on but the light from the screen had prevented sleep. The day of hard work in the gym and therapy was seriously affected.
Sharing a room with someone (who was a stranger until last week) who always wants your help or always wants to help you or organise you adds to your brain fatigue and can really affect your wellbeing. Survivors or rehab staff who have had positive experiences involving shared bedrooms extoll their virtues, but if the arrangement doesn’t work it can have a big impact on your recovery and you may feel unable or unwilling to raise it as an issue.
In contrast, many survivors tell researchers they felt isolated in stroke rehab, that they would have liked to connect with other patients, especially with other stroke survivors. One stroke survivor said they got valuable peer support from someone who had ‘been there’ and were a bit further down the track. Sharing lived experience is such an affirming way of healing and growing from stroke, for real understanding, practical and emotional support. This is one of the main reasons the Genyus Trauma Survivors network thrives. Through our group we’ve all met people who “get it”, have wins and losses, sad, bad and angry days, we share and celebrate milestones and achievements.
The boredom of waiting for your session – life in the corridor.
Feeling isolated in rehab happens because outside your bedroom, there are sometimes very few places to meet up informally with other ‘patients’/survivors. Each person has their own timetable of therapy sessions with different allied health professionals and doctors, and it is only if your timetable and someone else’s match up a bit that you can make a link with someone. There can be a lot of ‘waiting’, parked in a wheelchair in a corridor outside a therapy room or the gym by the Porters who keep the system rolling. Sometimes this can be good for meeting other ‘parked people’, but it is not the best environment for meaningful communication. Talking about the porters who keep the system rolling and are often central to survivors’ sense of being ‘cared for’, yet in most hospitals they aren’t seen as part of the ‘care team’. In the rehab that I went to the porters sometimes introduced you to another patient if they realised you had interests in common, they would also have a quiet word with your therapist if they thought you needed a bit of extra TLC that day. In the same way the person who takes your food order, or delivers it, who cleans your room or who delivers equipment all have an influence on your recovery and mental health. In hospitals they call these ‘hotel services’ but in rehab they are much more than that. Feeling tempted to eat, feeling clean sheets and enjoying a clean bathroom are important when you’re ‘living in’ for a few months.
The boredom of not enough rehab sessions – why am I here if they are not making me do stuff?
Stroke survivors have previously commented to rehab researchers that they spent a lot of time bored, because unless they had a therapy session there was nothing else to do. In Australia in 2018 only 51% of rehabilitation services delivered more than two hours of therapy each day and 41% of stroke patients who were interested in returning to work were offered no assistance. Some lucky stroke survivors get up to six hours of rehab a day and for them the issue was getting space and time to rest.
The need for quiet rest or ‘down time’ versus ‘active focused rehab’ time.
When you are in rehab after stroke the impact of exhaustion, fatigue, sensory and brain overload can be enormous! Remembering stuff is hard. Most rehab units only have therapy sessions Monday to Friday, but some Private Hospital rehab units have Saturday sessions. The rehab I went to had Saturday sessions and it was a frequent chant of “I don’t want to go to rehab no! no! no!” Rehab as it is done now seems full of contradiction and takes a while to get used to. It looks like a hospital, and sometimes it feels like a hospital, like when you are in your bed or using the bathroom. There’s a nurse’s station and nurses, but the nurses are specialist rehabilitation nurses, whose goal is to help you move towards you looking after yourself and not needing them. Not to say they aren’t caring or compassionate, they are mostly committed to making you as comfortable, informed and cared for as they can. The nurses on evening shift at my rehab had an uncanny knack of being able to get me ‘positioned’ in bed, with my paralysed ‘dead weight arm’ supported along a pillow at the right height for a good sleep. They helped me plug my phone in to charge and stick some earphones in so I could do a sleep meditation. They did everything efficiently but knew that without rest a survivor can’t recover.
The unacknowledged team members
Your meals are delivered to your bed tray just like in hospital, but you may have to have help to eat or have unusual cutlery and plates, you may not be able to swallow properly.
Your bedroom, and the hallway outside it, is more likely to have parked wheelchairs, wheely walkers, motorised wheelchairs and sticks than in a regular hospital. Somewhere nearby there will be a rehabilitation ‘gym’ with all kinds of exercise equipment and flat treatment beds, plus therapy rooms for 1-1 contact.
Learning the language of gyms such as: ‘repetitions’ and ‘sets’, if you haven’t done so before in the rest of your life this adds another dimension of confusion to your physio rehab sessions. You’ve just learnt how to lift your left foot again and move it forward and this lovely person wants you to ‘scrape your foot back like a horse does’! (This is a useful exercise, by the way). Early stages in your stay, you might be doing rehab in your pyjamas and without the right shoes. Survivors share with one another their performance anxiety in the rehab gym, their fears of falling or hurting themselves.
Throughout the day patients take themselves, or are accompanied or wheeled to receive therapy, there is more movement in, out and around the rehab ward than a regular hospital ward.
Having to ‘fit into the system’ rather than “fitting around you’ is something even the rehab staff talk about. The inflexibility and inappropriateness of ‘living’ in a hospital, while working to become independent is a strange combo.
Gaining Confidence versus Feeling Controlled versus Insecurity and Vulnerability – a perfect Trifecta
Survivors say things like:
“I want to be able to do things now that will take some time to re-learn and I’m feeling frustrated.”
“I feel like I’m ‘out of the world’ here, I want to go home but I’m also worried about what it will be like”.
“I want to go outside into the street or the park but I’m a bit scared”.
“Sometimes I feel like a ‘body’, a case or a patient rather than a whole person.”
“I want to say (scream): ‘I’m not normally like this!’”
Having a Team on your side versus Why don’t the rehab professionals communicate with one another?
Those of us who were lucky enough to get rehab come to understand that rehab is a learning environment. Setting goals and working towards them is a big part of rehab. Goals might be things like “I will be able to walk 200m in 6 minutes. Some survivors have commented that setting ‘goals’ that don’t mean much to you versus setting concrete goals you would actually like to achieve, isn’t very motivating. Survivors sometimes say: “whose goals are they anyway?” Survivors who have had imaginative survivor-focused therapists will say they came up with great goals together like “By 6th July when Bill is visiting, I want to be able to walk the 100m to the Aroma Coffee shop, have a coffee and walk back”.
An important aspect that seems missing in this learning environment is the acknowledgement that there needs to be ‘Different strokes for different folks” We all learn and re-learn differently, and rehab could build on this.
There are some very skilled and person-centred professionals working in rehab in Australia, but often the physical environment and the ‘discipline silos’ common in hospitals can have the effect of creating disjointed care. Survivors who have had the experience of rehab with cohesive multi-disciplinary teams talk about how integrated their rehab was. The need for someone to reinforce how you are improving, to note and celebrate progress is also important in rehab because it is often more difficult after stroke to recognise how far you’ve come yourself.
Stroke survivors often talk about how they needed emotional or psychological support in rehab. They wanted to be ‘really listened to’ and have their rehab focussed on their preferences, needs and priorities not a ‘set of common goals’. Those survivors who received that kind of support say it was integral to their recovery. After having a stroke many of us worried about money, return to work, the mortgage, the kids, the person you are usually carer for – and at the same time as everything is out of your control!
Encouragement, support and practical help from family and friends while you are in rehab helped many survivors, knowing that they could focus on recovery because someone was taking care of your responsibilities. Supporting and resourcing families and carers more is something that would enhance rehab. Survivors who had support from social workers and care co-ordinators in rehab really benefited.
Trauma – let no-one speak thy name!
I am going to finish this post by talking about trauma. In a world that is thankfully becoming more informed about traumatic experiences and the lasting consequences on a person’s mental health, it seems that recognition of the experience of stroke ‘as trauma’ is only slowly being recognised and addressed within rehab.
Trauma, grief and loss plus the space and time to cry and heal fights for a place in the rehab model. The neurophysiological symptom of ‘emotional lability’ keeps getting recorded on medical records but is at odds with the cult of positivity and ‘you can do this!’ ‘Go, go, go’, ‘don’t give up’ that exists in rehab gyms everywhere. We need to achieve a balance between hope, positivity, hard work, fatigue, rest, physical and mental recovery, compassion, encouragement, challenge, and care. What do you think?