When we brought Kevin home from respite in Perth, we found that, for whatever reason, Kevin didn’t walk or crawl while there. His footdrop has (excuse the pun) taken a huge step backwards, with probably a good 10 weeks of work being lost. He was unsettled upon his return, has had a UTI and now a very nasty cold with aches and pains, so it will no doubt be some time before his feet return to their stage of recovery in mid-May.
Staff where Kev was staying were intrigued at the level of higher function he displayed on the video footage I showed them, and they found it hard to believe that it was the same man they’d looked after for 3 weeks.
We found Kev more withdrawn and with a much lower functioning level; his agitation was high and he had what I can only describe as “separation anxiety”, so we’ve had lots of work to do in comforting and reassuring him. There was marked improvement in all areas by the second week after returning home and after the UTI was treated.
On 25 May a registered nurse (Sharon) commenced working with Kev for 4 hours on Saturday and Sunday mornings, then an Enrolled Nurse (Shirley, who is also a Social Trainer) commenced on Monday–Friday mornings for 4 hours. This is to continue for 8 weeks. One of three support workers (Mark, Carrie and Paula) also stays for 8 hours per day Monday–Friday. It is great to have everyone on board, and the independent documentation from health professionals is especially helpful.
Over the last 8 days, however, Kevin has been ill fighting a nasty bug, as mentioned above (yes, caring is sharing, and we all have had it!).
I have noticed that Kev is responding much more quickly (often immediately) to verbal requests. He is showing much stronger signs that he is understanding all that is going on around him. For example, when Kev transferred to his chair from the spa and I said “Shirley, I should’ve put a towel on the chair”, Kev promptly stood up (pushing on both sides of wheelchair) and looked at Shirley as if to say “Come on then, put the towel under!”
Even though there have been some backward steps, we have had some positive gains:
- Crawling well up and down steps independently
- Transferring independently into the car at times
- Opening the 1.5 metre-high gate independently when requested
- When given keys to a room, he will work out which key is needed and go to the room and open it independently
- Mobile and independent inside and outside of house (opens all doors)
- Using toilet appropriately at times
- Able to put shirts, underwear and trousers on with little or no help
- Able to “bridge” (lifting his hips, which enables clothing to be put on and off without using the rolling technique)
- Brushing teeth in a limited fashion, even opening his mouth and doing upper and lower teeth at times (inconsistent)
- Really enjoys visitors, usually family on Sunday evening; he makes an effort to get up and sit in lounge
- Drew a picture of a person (a first)
- Enjoying spa again; self-initiated walking to spa, getting in with minimal assistance (we were doing a ‘top-and-tail’, with one person lifting under the arms and the other lifting under the knees, to get him in and out until 2 weeks ago)
- Compliant at most times with going for walks (he refused to do so for some time)
- AND THE BIG ONE: went into Target and got a shirt, staying long enough for his supporters to have morning tea!!!! This is the first time that he has been able to tolerate going into such a busy environment
- Back into changing the gears and putting the handbrake on and off at appropriate times
- Really switched on to traffic light changes, pointing and verbalising instantly at times when the light turns green.
“Kevin understands all communication and will verbalise when he doesn’t wish to do anything or comply with requests.”
“Kevin does take his own weight – he uses a monkey bar and any stationary furniture (self-initiated) to manoeuvre himself from a–b. Little assistance is given by carers –mainly placing of feet and removing objects (Kev will remove objects if needed).”
“Able to follow prompts and indicate with yes, no, mmm and thumbs up.”
“Kevin managed to attend his own shave and attempted to clean his own teeth.”
“Kevin does work out the easiest way for himself during and before transferring.”
“Can indicate with gesture for assistance or none.”
“Kevin very aware of all activities today. Kevin exercised his own right hand after verbal prompts.”
Treatments
Quantum Medicine
After research and much consideration we have introduced Quantum Medicine, which is basically a Russian treatment based on physics. The idea is that it fine tunes the body (much like tuning in a radio and clearing the static) so the meridians are clear, to enable the body to get on with the job of healing.
Osteopathy
Annette has recommenced Kev’s treatment on Thursdays at lunchtime.
Massage
Lynette has restarted assisting us on the journey of reverting the footdrop and doing some general massage; these techniques will be passed on to the support workers.
Homeopathy
Hypericum is currently being used.
Aromatherapy
Using lots of lavender and a little orange, as needed.
Meds
- Keppra 750 mg for epilepsy
- Respiradone 0.25mg at night
- Nutritional supplements
- Opti Endura (to rebuild muscles, revert muscle wasting and to supplement diet; very obvious increase in muscle tone)
- Olive leaf extract as a general tonic for treating depression and UTIs and building the immune system
- Magnesium for muscle cramps and muscle health
- Rocket Formula (multivitamins with ginseng, ginko, chromium and selenium)
- 22 Certified Organic Wholefoods (1 tspn per day)
I try to pass on/document as many positives as I can, but the reality is that every day remains a struggle. It was difficult for us all to mark the 1 year since Kev’s trauma, and especially difficult for him; he was highly agitated, especially the day before, and did not want to be alone at all on the night of the 29 May. Kevin sleeps as much as 18 hours per day, especially since being ill so much in the last 4 weeks.
Practically, we have to deal with the ongoing incontinence and associated mountains of washing, broken nights, agitation and frustration, difficult behaviour (requiring diversionary management). However, we continue to gently initiate and encourage further improvement, however small that may be, and recognise every step forward as a hopeful building bloke for bigger things to come. At times Kev calls out in a constant chant, which to me seems almost like a Tourette’s-type behaviour. I am trying to keep afloat a positive attitude and maintain a willing determination.
On top of all this all are the ongoing legal and medical issues and sorting through the lifestyle changes and balanced decisions that need to be made.
At times life is very lonely. It is so lovely to get a message from those who care. Special thanks to Lewis and Mary-Anne Winter, who have really gone out on a limb with practicalites. Also to Lynne Lovette, who came to visit with her dear wee boy and McDonald’s to cheer me up, and to Tony and Linda –the chicken pie was delicious!! Thanks Sharon and Albert for your listening ears, and for your visits Kim, always remembering to pop in and say hi to Kev.
And the ever-faithful Sharon, who never fails to come and see us every week, and Pete, who was able to take Kev for a drive, and to the lovely comments forwarded on Kev’s site. You guys all add sunshine to the darkest day. It really means so much. Read more!
