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Video carer tips for MND/ALS |
During the course of Chris's illness I was at times able to record some video to assist other carers or our home care staff in various aspects of caring for someone with MND/ALS.
I only wish now that I had been able to record so many more things. At the time, I was mostly racing to get everything done in any given day. Still I hope that what resources I did manage to capture will now be able to assist others.
Right shoulder/arm massage
This video was taken only three months after diagnosis. At this point Chris had all his core strength so could easily sit upright. His arm strength however was poor and he was not comfortable laying flat so we did massage with him sitting in a chair as in this video.
As he progressed he would sit in a chair with arms as he did not have the core strength to sit on a straight backed chair with no armrests.
A massage therapist would come here also and would place Chris on a massage stool for a while. As he progressed massage could only be done with Chris in his recliner chair.
Right shoulder/arm ROM
ROM is range of movement. Particularly when a lot of spasticity is involved (upper motor neurones dying), the joints become very tight as the muscles waste and are pulled tight. Spasticity is an increased muscle tone - so the muscles are very tense and tight. ROM must be done very carefully as the muscles are fragile and you must not try to extend joints too far or muscle/tendon damage could result. However, gentle ROM paying close attention to the person as they indicate how far is comfortable can give a huge amount of relief to the pain frozen joints causes.
As Chris's muscle wastage progressed we simply kep adjusting his massage and ROM accordingly.
Left shoulder/arm massage
Essentially the same as the right side video, but his left arm at this point in his progression was tighter and had less movement than the right so it may help to see the slight differences and get a feel for how I would judge what I could or couldn't do.
Left shoulder/arm ROM
Again the left arm was tighter than the right and so the ROM is adjusted accordingly.
Hand massage
This video was done four months after the above shoulder/arm video. By this point there was very little ROM I could with his shoulders particularly once he had a fall and rupture the tendon in his right shoulder (which had been his 'good' shoulder til then).
The care staff used to play this video on his iPad and pretty much follow it along to give his hands some relief on days I couldn't get any massage done or if they had some spare time and he would let them.
Coffee drinking contraption
I designed this contraption so that Chris could continue to drink thickened coffee by himself. A friend built it for us and this video was his first attempt at using it. He continued to be able to use it right to his last week of life, even when all he had was movement in the left index finger!
Before this as he could not pick up a cup anymore I would have to hold it for him. This was not a good situation for several reasons - with his bulbar issues he had no lip seal and very poor swallow ability. So trying to tip a sip of any liquid into his mouth was fraught with terror! He had a PEG for his nutrition and fluids, but he did enjoy to manage a few sips of coffee a few times a day just for the enjoyment of something going into his mouth. This allowed him to continue enjoying a coffee right through.
Hoist transfer into bed
I so wish I had made many videos of this activity as Chris progressed. The basics of using the hoist were always the same but in this video it was early days of using the hoist and Chris would insist on standing from the manual wheelchair, then sitting on the sling placed in his recliner chair. You can see it was not a terribly safe operation as his legs were barely obeying any commands his brain was giving. On top of that, one of his daughters used to play with his equipment whenever she would visit and would never return his recliner or bed to the position needed for him. I was so intent on what was happening I didn't realise til the last minute that the chair was not in the standing position! See this as something to learn from - always check all your equipment is ready to go before you start!
As Chris's legs and core muscles declined further I would put the sling on him in the wheelchair and it was quite a simple task, I just don't have it on video to show.
Even when he was able to complete a standing transfer between chairs, the hoist was needed to place him correctly into bed. If he was not placed correctly into the bed there was no possible way for me to move him around in the bed as his arms were useless and he could not even lift his bottom off the bed. The result would be him slowly sliding down the bed as I tried to arrange him, and he would not be straight. The hoist is very easy to use - always GO SLOW and work with the other person.
Standing transfer
By the time of this video Chris was no longer walking anywhere, but was able to stand to transfer between chairs. The hoist was needed from months before this video to place him in bed. This method of standing was taught to us by our OT.
Nose over toes was her favourite saying I think and I cannot emphasize how much difference it made to getting him up easily.
The other really important feature is that you must not let the person use rocking back and forwards to propel themselves up. Chris had been insisting on doing this for a while as his core strength was fading and I can attest that we nearly had a few falls as they cannot control themselves if they use a rocking motion to get momentum - they cannot stop that momentum. Several times he had accused me of pushing him over...
The method of lean back once and then stand once nose goes over toes kept him able to do standing transfers until his last few days of life.
Blooper video to end with a good laugh
When we tried to make the hoist video Chris started to laugh about it before we started filming. On the first attempt to film his daughter hit record and then stopped a second later without meaning to. This started Chris laughing again, but he thought he had himself back together. But no, it ended with all of us in stitches and it took a while for us to get ourselves back on track to film the hoist video higher on this page. I still smile watching this as he laughed so rarely in the last six months of his life. Before MND/ALS he was always making jokes and laughter was such a part of our lives that I'm sure he would be happy if he knew that people could laugh with him now.
Radio interview about my book Overcoming a loss by 1000 deaths June 2015
Please note campaign discussed in the interview is now over, the book can be purchased HERE
My first Ice bucket challenge - 2014
My ice bucket challenge 2015 - until there is a cure!!!
Katrina Jeffery cared for her husband Chris through MND/ALS with FTD and provides these supports from first hand experience.
Copyright 2015. All resources that have been used or quoted provide direct links to the source.