5. Things we do to help Robert
I’m with Bob every day for 5-8 hours, cycling in for 10.30 in the morning to stay till around 2, and then again in the evening from about 5.30 to 7.15pm (or later on my night off) doing passive physiotherapy the occupational therapist and physiotherapist taught me, reading and talking to him, playing the guitar, listening to music with him, doing leg, arm and head massage, shaving him, giving him manicures and pedicures and generally trying to make him feel good.
He’s got a TV/DVD in his room, a stereo, his own clothes and towels and a poster of Elvis, a beach in somewhere beautiful and himself (front page of this blog) supporting Eric Clapton c.1982. We have photographs that we show him, so there’s familiar things going on around him. However, we now know to limit ‘noisy’ stimuli to 15 minutes a time – too much input can have an adverse effect. There’s so much noise in his environment already that trying to find ‘quiet’ space for him is difficult.
While the hospital will look after his ‘physical’ needs, it’s down to us to try to bring him to a sensory awareness. His (little)sister Ritamary – without whom I would be lost – brings in fresh herbs like mint and basil, or fragrant fruit and gets him to hold and smell them, and tells him what they are. We also cadged a ‘smells kit’ from the OT and Ritamary is in charge of that (see https://robertbolton.org/2012/05/10/creating-a-sensory-stimulation-kit/). She got some photos enlarged and holds them up for him to see, ones of their parents, or when they were children and photos of his children and grandchildren who he loves so much. There’s a brilliant picture of Bob walking down Great South William Street where Bono was walking in front of him that was published in the Sunday Mirror. We got a call one Sunday to say ‘what’s Bob doing in the paper?’ See https://robertbolton.org/2012/05/16/bob-and-bono/
Bob’s brother Eamonn visits, with his wife Zita and son Edward, and plays guitar and talks to him, and Bob’s son Jason and his partner Teresa come in to read to Bob, hold his hand, play guitar and talk to him – all things that he needs. His nieces Majbritt and Bronwyn visit and Bronwyn does reflexology and reiki for him. His aunt Phyllis and cousins all keep in touch by post or phone, and each message is passed on immediately. All the love that he gets is really good for him and he’s getting lots.
One of the nurses said Robert’s sleeping cycles are like when you’re having your house re-wired: you have to turn off the electricity while the re-wiring is being done. I like that analogy.
Other things we’re trying
Via the website Inspire – recommended to me by Margaret Garrigan, a stoic lady with a heart of gold who rehabilitated her husband herself (we’ll get her story on a blog someday, I promise, it needs to be told) – http://bit.ly/LIuulM– I found recommendations for things like using a sleeping medication called Ambien which can help a person become more awake. There’s a video of a chap which, who, when his fiance give him Ambien, he wakes and can walk and talk. It would break your heart. A lady called Ruth posted it for me, saying: “You’re doing all the right things. Extra thoughts and energy for you. About the ambien, Jim only did 10`s but this clip if you haven`t seen it yet, she did try 1 and 1/2 pills. Hope it helps. http://on.msnbc.com/tSj2I8”
I do this too, along with muscle tapping (my friend Colin who is a personal trainer says it helps the muscles to remember what they need to do).
We have always had an interest in complimentary therapies and have been fortunate to have some friends – specialists in their fields – who were willing to try and help Robert.
These therapies can help support someone in Robert’s condition, strengthening his immune system, bolstering his lymphatic and adrenal systems and are non-invasive.
Brenda Darcy http://www.complementary-therapists.com/irish-therapists/dublin/brenda-darcy.htm is a kinesiologist and reiki master who has been in to see Robert twice. During her first session with him he cried at one point and sighed deeply towards the end of the session, then fell fast asleep, like a child. Brenda worked on his meridians, his lymphatic points and, using reiki, polished his aura. She checked his unbalanced polarity and then turned her attention to me, spent ten minutes giving me a balance and I felt better than I had for months.
Homeopath Mark O’Sullivan http://www.homeopath.ie spent over an hour with us both finding out what exactly had happened bearing in mind all the trauma Robert’s body had been through, the toxicity from medication and the need for support from infection. He took copious notes and came back to me within 24 hours with his recommendations. Again, being a non-invasive therapy it’s possible to administer drops to Robert which causes no distress at all. And Mark too thought I might need some support and gave me some Ignatia 200c to use when I might feel a bit ‘overwhelmed’ (as I was a little the day he visited – talking about the event from start to finish can be very upsetting). It did and does help to calm me, taking the edge off the stress and fear that I feel at times.
Having these professionals in our corner has been a great comfort to me and there has been an improvement in Robert’s condition in the five or six weeks since Brenda and Mark have given us the benefit of their expertise.
The Feldenkrais Method
A very recent discovery, and a fascinating one, was Feldenkrais method practitioner Mark Keogh http://www.feldenkraismethoddublin.ie/ Mark works using movement to engage a person in learning to improve function in a way which has meaning for them, and create conditions for new possibilities. It was only when Mark was with Robert that I could see what this meant.
Robert was going through one of his ‘tense’ stages when Mark began his session and that normally means Robert’s eyes get wide, his arms tighten in towards his chest and he looks a little frightened. He didn’t look scared this time: he was looking intently at Mark, and when he looked away it was with a thoughtful expression, as if he was concentrating on what he was feeling. I guess I should have been watching more of what Mark was doing but I couldn’t take my eyes off Robert’s face. It was interesting that, instead of trying to get Robert’s arms to change position, Mark let them follow the path they were already on and worked on them there, loosening them very gently and slowly.
I didn’t know anything about the Feldenkrais method but everything Mark said made sense: about letting Robert discover the boundaries of his body, encouraging re-learning movement, muscle memory, etc. Of course each person is different so the treatment is dependent on their situation.