Wednesday, 27 November 2013

Caring for Mum – one year on – many bridges crossed – many more to go...

This time last year, I’d just become Mum’s full time caregiver. Prior to that, I’d been a sort of part time carer, but wasn’t willing to admit it. The big question - where am I now?

At first I took on the role of primary caregiver, working alongside agency carers to help Mum. I even thought, that when the time came, I’d become an agency carer myself. Not now - I’ve learned so much from my caring role, and thanks to social media, I have met so many wonderful people, and I now know I’d be wasting the creative skills I already have.

By profession, I’m not a caregiver, I’m a designer. I’ve learned to use my design and creative skills, over the last twelve months, in a way I had never expected. I’ve also learned that my many years experience as a reservist soldier, have also proved to be very useful.

Twelve months on, the use of creativity in my caring role has increased, caring has become a reason to express further creativity, rather than suppressing it – something I would not have believed possible, just a year ago.

Military training has also been useful, facing adversity with confidence is difficult, and fighting for the rights of your caree, even more so – the army taught me not to be afraid, and face adversity without trepidation.

My beliefs are simple - I’m not religious, yet I believe in right and wrong. If you know you are right, stand your ground. If you know you are wrong, accept defeat with dignity, not humility. Be proud!

My blog has progressed over the last twelve months, and some of my earlier posts now seem quite naive, even to me. But, the blog serves as a history of my own journey, through what can only be described as the most difficult transition in my life.

My Mum - bless her - has been a guinea pig throughout all of this, and a very receptive one at that. As my caring role increased, and my creativity started to take over, Mum became the person with whom I tried out my various, sometimes hair-brained ideas. Fortunately, she enjoyed the experiences, and some are still in use to this day.

Her bedroom started as a simple, yet relatively bland, rectangular room. In the last year it has been transformed quite dramatically, initially using simple things like flowers and pictures, into what is now a dynamic mood enhancing environment, embracing everything that Mum likes.
Music, sounds, images, lights, textures and smells – a totally sensory environment, that can be adapted to her every mood, or to help calm her, when distressed.

Everything is chosen to enhance her sense of well being. Bedding is plain, but colourful, mainly pinks and purples – calming colours. No patterns are used, as these can cause confusion. Lighting is subdued, but colourful, along with a small full spectrum light, to help combat SAD, and, hopefully, maintain Circadian rhythms.

One of my early experiments is still in place, a digital photo frame used as a day/night clock, again to help maintain Circadian rhythms. The files have been free to download for quite some time, and at the last count, almost four hundred people, worldwide, have benefited from this simple, yet effective, system.

Another simple experiment was clothing. Mum spends most of her time in bed, yet rather than wearing traditional bedclothes, she wears kaftans. These are loose fitting, and are easy for carers to remove and replace. Unlike the classic, undignified hospital gown, kaftans are dignified, stylish, and just as easy to change. Most, being made of polyester, are also hygienic, easy to wash and dry, and are ideal as both bed wear and day wear.

Music plays an important role - music from Mum’s past, to popular classical style music by the likes of Andre Rieu. When watching an Andre Rieu concert, Mum becomes quite animated, and thoroughly enjoys herself. Later of an evening we may just sit and listen to music from the 1950s, which Mum finds relaxing, and is ideal as a preparation for sleep.

Feeding has undergone a number of experiments, from simple finger foods, to full blown meals. I have learned to prepare meals that are easy for her to eat, and although she can no longer eat such meals independently, they are tasty, and indeed home-made. Ready-meals, whilst essential for some who don’t have the same support as Mum, were ditched a long time ago. As for drinking, Mum now uses leak-proof sip cups, simply because she has a habit of just putting the cups down anywhere on her bed, and frequently upside-down. By maintaining a well balanced diet both for her, and for me for that matter, she no longer needs nutritional supplements.

Medication – when Mum first returned home from hospital, I tried to administer her pills with a drink. This proved to be difficult, as Mum has always had a problem swallowing pills. Pills are now administered with her breakfast – normally Weetabix with plenty of full-fat milk. Each pill is administered with a spoonful of well soaked Weetabix, and for the most part, this works very well.

Mum has, for the last year, been doubly incontinent. She has pads (diapers), which she wears all the time. When bowel movement is imminent, she needs to be hoisted on to the commode. The timing of this rarely coincides with a visit from one of the agency carers, so it is inevitably down to me, to get her on and off the commode, and make sure she is clean. The initial shock of having to carry out such a task has long gone – it is now just something I do.

Thanks to social media, I’m now in contact with many people who find themselves in similar situations, and not just in the UK, but around the world. I sometimes think of what it must have been like for carers in the days before we had such opportunities, and indeed what it must be like for older carers without internet access, or access to modern technology. Social media provides me with the opportunities to learn from others, share ideas, or just provide or receive advice and support. This ability to communicate with others has helped both me and Mum.

One year on, I’m now in a place I never expected to be, yet the experience has given me the motivation to help others like myself, and those people living with dementia, in any way I can. To use my former skills, in a new, and previously unexpected way, to help improve the quality of life for those living with dementia, and to help make the roles of their carers more manageable, and more rewarding.

My journey so far, has taught me many valuable things. By using my creative skills, I have been able to create a sensory environment for Mum, and the pleasure she gets from it all, fills me with joy. It is this joy, through adversity, that I’d like to share with as many others as I can.

Where I will be in another year? I just don’t know. I’m not yet in a position to be able to plan that far ahead. In fact, at the moment, I just take each day as it comes, and treasure every moment of joy and laughter...

Sunday, 17 November 2013

Sensory lighting and mood effects for dementia

Why now is a good time to create a sensory room...

We know about the use of sensory rooms for children with special needs - however, such sensory rooms are also useful for people living with dementia.

There is a whole host of different products available, which can be used to create your very own sensory room. I’m currently trying out a number of products to create such a room for Mum, in her own bedroom.

Mood DVDs

A simple and easy start is to purchase one of the many mood DVDs available. These provide a variety of calming videos, combined with either natural sounds or music, or in some cases, both, and help set the mood. There are a variety of scenes available, from a crackling fire, mountain creek, waves lapping on a beach, tropical aquarium, waterfalls and even fireworks. The key aspect is the combination of calming scenes along with appropriate music.There are even DVDs available for a specific time of the year – Christmas – with seasonal scenes and Christmas carols and music.

Two DVDs, specially developed to help relax children and adults with a range of conditions including dementia, Alzheimer's, autism and Down's syndrome, are available here

Mood and relaxation CDs are also available, these of course don’t offer the visual stimulation provided by the DVDs.

Colour change lighting

You could consider colour changing mood lighting. A variety of LED bulbs are available, some with remote controls, to change the colour sequences and to brighten or dim the light. Once again, these can be used in conjunction with music to create a calming effect, and also in conjunction with other forms of visual stimulation. At this time of year, take the opportunity to look out for colour changing Christmas lights and decorations.

Image projection

Aside from the classic rotating mirror ball scattering a myriad of moving points of light around a room, there are a number of different projection devices available, one of the most common being the home planetarium. Unfortunately some of these devices are not quite as good as they at first appear. The image is often blurred, and the room has to be quite dark for the effect to be fully appreciated.

There are, however, other devices, that are not planetariums in the true sense, but produce an effect similar to the night sky, with moving stars, shooting stars and cloud nebulae - others re-create the effect of light under water refracted by the gentle waves on the surface, and some even play sounds or music. These devices vary considerably in price, and even some of the more expensive ones, are not that good.

I've now received the Laser Twilight projector (as seen in the photo above), and have had a chance to try it out. Being a Class 1 laser product, the green "stars" are quite bright, and are clearly visible in daylight, the blue "cloud nebula", is a little dimmer, but still visible under ambient light. The "stars" move around in different directions, some moving faster than others, and the "cloud nebula" shimmers, and changes shape. The "stars" and "cloud nebula" can be displayed together, or independently. If this is the type of effect you'd like to achieve, then I would recommend the Laser Twighlight.

Daylight lighting

Many people suffer from Seasonally Affective Disorder (SAD), and the same can be true for those living with dementia. Full spectrum lighting is a great way to help combat such disorders, and although some SAD lighting can be quite expensive, it is also possible to adapt a fairly standard light fitting - with the use of full spectrum bulbs or tubes (search for “full spectrum” lighting instead of SAD lighting). The use of full spectrum lighting can help restore a person’s natural Circadian rhythm.

For Mum, I’m currently using a small, multi-LED full spectrum light, that clips to her bed – it is low voltage, does not get hot, and is therefore safe. Full spectrum lighting is not just beneficial to humans - as the keeper of both a budgie and a small parrot - I also use avian full spectrum lighting for my birds.


Smell is one of the senses often forgotten when we think of a sensory environment, yet it is just as important as the other senses when it comes to the sense of wellbeing. I am not of course advocating that we use a plethora of scented tea-lights, and all the dangers they entail. There are, however, small battery operated tea-lights, which give the effect of real candles. These, used in conjunction with plug-in or automated spray fresheners, or scented potpourri, can create the same effect, and are much safer.

As with everything else, experiment. Older people may find comfort in smells from their past, when they were young, or when they were children – from the smell of rose water to carbolic, from lavender bouquets to mothballs, even the smell of a newly extinguished match – any of these, and many more, may help re-awaken long forgotten memories.

Other lighting and sensory ideas

There are of course many different forms of lighting that can help with visual stimulation, the classic lava lamp, colour changing bubble tubes and glitter candles, colour changing LED and fibre-optic trees and rope lights, are just a few.

In Mum’s room, there is a gantry hoist – one of the upright supports has had artificial ivy trailed up it, to break-up the solid, uncompromising appearance of the support. At Christmas, artificial fir garlands and lights are added, the support, becomes a Christmas tree.

Whichever way you choose to create a sensory room, the key word is experimentation. Not all of these devices and solutions will work for everyone - it is simply a case of trying different ideas until you find the ones that work.

In the run-up to Christmas, a much wider range of colour changing lights and sensory devices become readily available, so Christmas time is the ideal time for experimentation – after all, if they don’t work for the person they are intended for, they can still be used as Christmas decorations.

For Mum, and for me, it is relatively easy, as I know the type of music she likes, and that she likes colourful lighting, and watching scenes that are calming and relaxing. As I write this, she is listening to the classical music tracks accompanying scenes of tropical fish swimming in an aquarium.

Just found these too...

I've just discovered some USB speakers, ideal for use with iPods, MP3 players, tablets and laptops, although with a little technical know-how, they can also be connected to TVs, DVD and Blue-Ray players. They're ideal when used in conjunction with music. When in use, the speakers create illuminated jets of water in time with the music - yet another wonderful sensory experience.

Latest products tested (added 5 April 2014)...

As this is an on going project, I'm always on the look out for new sensory ideas, the latest are two more lighting effects.

The first is an LED Crystal Ball, it has powerful LEDs and through the faceted clear plastic dome, the coloured light is scattered up the wall and over the ceiling. The ball can be set to seven different automatic displays, with speed adjustments, and two different sound activated displays to use when playing music. There are three models available, one three colour RGB, one is seven colour, and one that is also an mp3 player, using a USB stick or an SD card. The LEDs are bright enough to be seen in a well lit room. Compact in size, it measures just 19.5x19.5x19 centimetres.
The second is a small, two colour, red and green, laser projector. This projects hundreds of laser "stars" in ever changing patterns, complete with a speed adjustment for the pattern changes. This particular laser projector is also quite bright, and can be used quite successfully in a well lit room. As with the LED Crystal Ball, the laser projector also has a sound activated mode, and responds well to music. Its compact size measures just 13x9.2x5.2 centimetres.
Both the LED Crystal Ball and the laser projector can be purchased in the UK for less than £20 each.

Friday, 8 November 2013

Book review – Beyond my Control

why the health and social care system need not have failed my mother
by Suzan Collins

For those concerned about the care and welfare of an older loved one, or indeed older people in general, this book is at times, a very personal and extremely emotional read.

From my own perspective...

Having, in 2012, experienced some of the faults and failures, of health and social care services in England - involving my own Mother’s wrongful pre-admission diagnosis, three week stay, and difficult discharge from our local hospital, I was particularly interested to read about someone else’s experiences. Fortunately, my Mother returned home, and I became her full-time carer. Sometimes, this isn’t always the case...

Suzan’s story...

Suzan takes us through her, and her family’s, personal, very private, often difficult, and sometimes extremely emotionally charged journey - a journey experienced by them and their Mother, thanks to an incident at their Mother’s care home, that resulted in a hospital admission, for both a broken ankle and fractured femur.

What happened during the next few months - is truly shocking...

Failures by the care home and its staff, in duty of care, and the failure to record and report the incident, along with conflicting accounts of what actually happened to cause such injuries, remain unresolved.

Failures by the hospital, not only in their duty of care, but dignity, respect, record keeping, the administration of controlled medicines, and the attitude of staff towards both patients and family members, is frightening.

During this incredibly difficult time, they had to deal with the unexpected death of a close family member, and long journeys, by car or train, from the east coast to the west coast, in order to visit their increasingly ill Mother.

Suzan has 33 years experience in both health and social care, but none of this would be of any help to her Mother - time after time the family’s requests were either ignored, or not acted upon. Nothing they did would help.

My feelings...

Being a carer for my Mother, I have to admit, that at times, I was in tears as I read about the unfolding events and crises that occurred during the weeks and months, of Suzan’s Mother’s stay in hospital. It was a journey I could very definitely relate to. Some of it, a journey I have yet to make. A journey, I sincerely hope, will not be as difficult and distressing, as the one experienced by Suzan and her family.

Suzan’s mission...

Suzan now has a mission to try to improve health and social care for older people. To ensure that that care, is of the required standard, that staff are able to voice their concerns without redress, and that the current re-active system to address issues in health and social care services, becomes pro-active. In the hope that what happened to her Mother, will never happen again. A mission for which, being an unpaid family carer, I would give my wholehearted support.

For everyone interested in, or concerned about, the care of an older person, within health and social care services, not only in this country, but across the developed world, and beyond, this is - a must read!

Suzan Collins is a professional trainer and consultant in health and social care, working across the country. She assess staff performance in Health, Social Care and Management, delivers training, carries out pre-inspection (Care Quality Commission) compliance checks and advises on policies and procedures on subjects that include 'safeguarding' vulnerable people from harm and abuse. Suzan campaigns for better standards of health and social care in care/nursing homes, at home and in hospitals. She also campaigns for better support for staff providing this care. In addition, she is author of six, internationally selling open-learning workbooks, one of which is on Safeguarding Adults.

Monday, 4 November 2013

My not so usual day in the life of a full-time carer – calling NHS 111 in the early hours of the morning

Although the day started as normal, the following 24 hours were to prove somewhat different. Mum was fine during the day, but gradually became a little more confused in the evening. This often occurs just before a bowel movement.

Throughout the evening, I continued check to see if the commode was needed, and as is often the case, it was finally required at around 03:30 in the morning. As Mum can’t get out of bed by herself, she has to be hoisted onto the commode. Whilst on the commode, she became more vague and confused, and was trying to retch, but producing nothing.

Once Mum had finished with the commode, and I had cleaned her and hoisted her back on to the bed, it was clear that she may need a doctor to come and see her, I suspected it might be a UTI. I have a tub of Urine Reagent Strips, and was able to carry out a test. Whilst the test was negative for leukocytes, it was positive for blood, another possible sign of a UTI, she's had a history of occasional UTIs since late 2012.

Fairly recently in the UK, the National Health Service (NHS) introduced the 111 service for non-emergency medical calls. Often criticised for its poor service, I was able to put it to the test.

I called the service at 04:26 in the morning, and after answering the usual computer generated questions, and saying I thought it might be a UTI, I was informed that a clinician would call me back. The call-back came 17 minutes later, after being asked pretty much the same questions again, I was asked to check Mum’s blood glucose level - it was raised at 8.8 mmol/L (158 mg/dl). The clinician agreed that a doctor should be sent to see Mum, but that it could take up to two hours. I then had to wait for the doctor to call me.

I was called at around 05:03, and asked what the symptoms were, the doctor told me he’d be round as soon as possible.

He arrived at 05:55, and carried out the usual checks, temperature 37 °C (98.6 °F), listened to her chest, and asked her if she had any pain. He then asked me how easy it would be to get a urine sample, I explained it would be difficult, but that I had managed to use a test strip, and was able to tell him the results.

He agreed that it was quite likely to be a UTI, and prescribed the antibiotic Trimethoprim, to be taken twice a day, for seven days.

By the time the doctor left, it was almost exactly two hours since I made the initial call – so I can’t really complain. He also had the Trimethoprim with him, so no need for a prescription and no need for a trip to the pharmacy. Here in West Sussex, the 111 service seems to be operating efficiently, at least in this case.

The down side, and nothing to do with 111, a sleepless night for me - one of the joys in the life of a full-time carer!!

Friday, 1 November 2013

Salisbury NHS Foundation Trust sells own brand moisturising cream

In 2012, Salisbury NHS Foundation Trust launched its own moisturising cream under the brand My Trusty Little Sunflower Cream®. It is based on a formula developed at Salisbury District Hospital over twenty years ago.

Developed with the assistance of clinical scientists and the hospital pharmacy department, it proved popular with patients, many of whom requested that it be made available to buy after they’d been discharged. The cream was originally used to help with post-operative skin care in burns and plastic surgery.

In what was the first venture of its kind within the NHS, the Trust decided to market the cream to help raise additional funds to further improve patient care. The original formula has been adapted for the 21st Century, and is available in both unscented and lavender. 100% of the profits generated from sales, are re-invested into patient care.

The  cream, which contains 5% pure sunflower oil, is rich in essential fatty acids, free from perfume, lanolin, colour, and parabens, and is not tested on animals. It helps replace essential fatty acids, and improves the texture of skin. The scented version contains pure lavender essential oils.

The original cream, still manufactured at the hospital pharmacy, is available for purchase at Salisbury District Hospital.

My Trusty Little Sunflower Cream® is also available from the hospital, or can be purchased on-line from the website