In October 2015, Robbie Williams came to Sydney for his Let Me Entertain You tour. I was lucky enough to go along and be part of the crowd of mostly over 35-year-olds singing our hearts out to classics like Rock DJ and Angels.
I went with a friend of mine, John, who suffered a traumatic brain injury a few years back that left him with significant cognitive and communication impairments. His injury resulted in minimal physical impairments so he is able to walk slowly, stand for short periods. He needs to have close access to the bathroom, as incontinence can be a problem. John has 24-hour care at home so on the night of the concert I assisted John with his care and support needs which allowed John and his care worker to have a break from each other.
I was the self-appointed Chief Organizer and Tour Guide, as it is quite difficult for John to initiate, plan and execute tasks. It was John’s idea to go along to Robbie so I happily to charge of booking the tickets, organizing the parking, driving and all the other miscellaneous tasks involved in getting us to the gig on time.
John has a Companion Card that enables him to access social events, such as concerts and movies, with a companion or support person at no cost. This is a fantastic resource which opens up many more opportunities for him do things he really enjoys.
As the Chief Organizer, I booked the tickets through the “Special Assistance” telephone booking line and was able to purchase two tickets for the price of one using John’s Companion Card. I made the booking honestly, explaining his care needs. He was able to walk so we did not need wheelchair access seating, but we did need to be close to the aisle and bathrooms and not have to negotiate too many stairs. The lady on the phone was very helpful and assured me that our tickets were the best available for his needs.
We arrived at the concert in plenty of time to have something to eat and decided to find a table to sit down before going into the arena. Typically, John can look at a menu and find a word he is familiar with e.g. Cappuccino and order by pointing to that option. This technique relies heavily on the menu items being familiar to John and the waiter paying attention to the actions and prompts John makes with his hands. John is able to attempt pronouncing some familiar words for example; however the word that comes out often does not match what he is pointing at on the menu. He often has difficulty understanding people if they do not speak directly to him, talk too quickly or jump from one subject to another. So you can imagine, the pre-concert restaurant environment was not the ideal place for John to feel capable and included. In fact, the environment, buzzing with excited people, busy crowds and the noise of constant announcements only bought John’s disability to the forefront. I soon realized that in this type of environment, he needed much more support and assistance than what I would normally provide.
We slowly made our way to our seats, with John sticking very close to my side and on first sight they were great! We had a side view of the stage and I immediately thought he would be impressed that I had paid a bit extra for fancy seats. But as we got closer, I started to realize that when the lady on the phone helping me with the booking said, “a few seats from the aisle and close to the bathroom” she actually meant, “down a flight of stairs without a rail in almost the pitch black and half way across a row of 30 seats”. This was not going to be great. John and I had to walk slowly down the steps with him clinging to my arm and then awkwardly stepped over 30 people to get to our seats. Don’t get me wrong; once we got there, the seats were great but it was going to be a nightmare getting John to and from the toilet.
Robbie started and the first song was great! He sang “Let Me Entertain You” and the entire crowd were on their feet and singing along. John stood next to me and seemingly looked to be enjoying it just as much as everyone else. After the first song, we sat down, but as I looked around us, nobody else was sitting. I nudged John and suggested we should stand for a bit longer so we could see, which he happily did, but after the second or third song he needed to sit again. The crowd around us stood, singing and dancing and initially this didn’t bother me, as I thought eventually they would all sit down for a bit. Surely during one of the slower songs they would sit? Maybe when Robbie was just talking and making jokes they would sit? No. Wrong. They stood for the entire concert, all bar the brief times when Robbie ran off stage for a costume change/toilet break.
After a little while, of watching John try to peer through the gaps between people, it got the better of me and I politely asked the ladies in front of me if they would mind sitting for a bit so that John and I could see. I tried to explain that John had trouble standing and we couldn’t see past them. Their response was a not so polite version of… ‘Too bad’. Thankfully, John was sitting with his earplugs in and was unable to understand their response. When I explained to him that the people did not want to sit down to which he replied quite loudly with a few expletives, which I cannot repeat here.
The rest of the concert was OK. John sat for the remainder and I took photos of Robbie on my phone and showed John so he could see some of what was happening on the stage. We clambered over everyone to get to and from the toilets several times, and then up and down the stairs in the pitch black. Thankfully, John didn’t stumble and made it to the toilet in time every time…!
Going to the Robbie concert with John was a real reminder for me that the environment has such an enormous impact on a person with a disability. Whether it is simply being in an unfamiliar space, hearing different noises and sounds or being amongst a crowd of people who are not familiar with the disability or a person’s individual needs, it can all make a huge difference. In John’s case, the Robbie concert amplified his care and support needs and on reflection was probably more stressful than enjoyable for him.
Would I do it again? Absolutely, John is a huge music fan and going to Robbie was something he chose to do. John, initiating and suggesting a social outing was a fantastic achievement in itself and not something he does often so I would gladly support him with these choices, particularly if Beyoncé or Bruno Mars were involved (!!). Would I be a little less honest when booking the tickets so our access to seats was better… possibly if my conscious will let me.
A few weeks back, my Aunty Jean came to stay.
Aunty Jean is 83 years old, lives alone and is fiercely independent, or as my Mum would say, stubborn. She has had only a few minor health complications throughout her 83 years and most of those have occurred in the past 10 years. Minor things such as, a couple of strokes, countless falls, a fractured hip and a cancer scare. All ‘minor’ things that Aunty Jean says the family make too much of a fuss about.
In preparation for her arrival in Sydney my brain naturally switched into “OT” mode. I started running through an assessment of her general abilities and how she would handle a few days within my home. Could she get in/out of my car? What about access into and around the apartment? Would the couch be too low for her to up from? The shower over the bath was a definite problem and the steps out onto the balcony were a disaster waiting to happen.
After a small working bee and a quick visit to the equipment supplier to buy a few things, the apartment was transformed in an OT’s dream. Well that’s probably a slight exaggeration but it was much safer and I gave myself the OT tick of approval.
I hired a bath board as although Aunty Jean was adamant she didn’t need to shower and was happy to ‘bird bath’, five days seemed like a long time without a shower during Sydney’s most humid month of the year. My beautiful rug in the lounge, which covered the awful renters carpet was rolled up and stored away. The armchair (which I never use) with the high back and solid armrests was dusted off and repositioned. I secured a suction grab rail on the wall at the step to the balcony (and yes I checked it a billion times before she arrived). And as a final touch, I bought a Handy Bar- one of those nifty red grab handles to help with car transfers.
Before Aunty Jean came to stay I would have said she was a little unsteady on her feet but managed with her walking stick, cognitively great as she remembered birthdays and was always talking about current events and generally doing well living alone. So I was more than a little surprised with the observations I made throughout her stay.
Aunty Jeans’ mobility was very poor. She furniture walked inside and flatly refused to use her walking stick. Walking outdoors was much worse and she relied on my arm whilst using her walking stick as a pointing apparatus to highlight the sights of Sydney. She was adamant she didn’t need the suction rail to access the balcony, although every time she used the door I caught her holding that rail with both hands.
Our family has always described Aunty Jean as being ‘sharp as a tack’ but what I now know is her memory is quite poor. She told me everything at least twice with no hint of recognition that we had already had the exact same conversation. She wasn’t able to keep track of the days and often lost track of the conversation. Her hearing was very poor and her refusal to turn her hearing aid on didn’t help.
She struggled with incontinence and as a result barely drank a thing throughout the day. After much coaxing she explained the makeshift system she had in place at home to manage the frequent incontinence that included a bucket and several washcloths…
So what did I learn during Aunty Jean’s stay?
I learnt there is a lot you can miss when you see only a snap shot in time of somebody’s life. I was reminded at how people, and Aunty Jean in particular, have an amazing ability to keep things together for short periods, be that keeping up with conversation, appearing well groomed or walking with the confidence of a soldier.
Aunty Jean’s stay has made me reflect on the client assessments I have completed over short 60-90 minutes sessions and the observations and assumptions I have made. As an OT, I am accustomed to client’s putting on their ‘best performance’ and needing to dig a little deeper during assessments, but I just can’t believe it was Aunty Jean who had been putting on the best performance of all.
Getting in and out of the shower used to be a simple daily task, but when your shower is over the bath and you can no longer make that BIG STEP what are the options?
A simple solution recommended by many Occupational Therapists is the use of a bath board. The bath board (as pictured below) is a piece of equipment that sits across the bath and is secured into place by rubber stoppers pressing again the inside of the tub. It enables a client to sit down on the board and safely move their legs over the edge of the bath. Many bath boards will have a small handle or grab bar to use for extra support when lifting legs in.
The bath board is ideal for people who can no longer step into a shower over the bath. It provides a safer means of transfer (getting in/out) and also a seat for people who need to sit due to balance, mobility or health problems or, just simply prefer to sit.
An Occupational Therapist can assist in identifying your needs and if a bath board is suitable for you. They will also assess if your bathroom environment is conducive to using a bath board.
For more information regarding bath boards or Occupational therapy Assessments please contact us on 0404 805 423 or laura@lbcm.com.au
Experiencing difficulty getting up and out of a lounge chair is a common problem I see when working with clients in the community. Either because of age related changes affecting mobility, perhaps an injury or chronic pain, the ability to get up and get moving become much harder. And whilst it’s easy for a young 30 something OT to tell people to ‘move it or lose it’ and provide the best strategies and techniques, there are times where another solution is needed. You may have tried chair platforms and furniture raisers, sitting in a high back solid chair rather than a comfortable lounge chair and still nothing works. So what’s next?
An electric lift recliner chair can provide that little bit of extra assistance in order to assist clients to keep mobile and maintain their independence. There are many different models with various functions, however to keep things simple the two most useful functions are the ‘lift and rise’ and the ‘recline’. I have briefly outlined the benefits of these below.
The lift and rise function; is operated by a hand-held remote control, it moves the chair from an upright sitting position to a 45 degree forward tilt and rise. As the chair lifts and tilts forwards, you are slowly moved into a position where your hips are higher than your knee, making the sit to stand movement much easier.
The reclining function means the backrest moves into a backward reline position which can provide the ideal solution for client’s who spend long periods sitting during the day, due to their health or mobility. I recommend the ideal recline function is one that enables you to recline the backrest and raise the foot rest independently of each other. This provides many points of adjustability, in my experience each individual client has a preference for the ideal sitting position for example, some clients cannot tolerate having their legs extending too much by the foot rest and other like to sit with a little bit of back rest recline rather than completely upright.
So if you are having difficulty getting up from a lounge chair and feel that you have tried everything else, it may be worth exploring the electric lift recliner. An occupational therapist can assist in identifying your needs and type of chair that would be best suited to bring back your independence and comfort at home.
For more information regarding electric lift recliners or Occupational Therapy assessments please contact us on 0404 805 423 or laura@lbcm.com.au