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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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Why Volunteer?

With both Volunteers Week and Carers Week this month, it is an important time to think about what we can do for others. Author of ‘Who Cares?’ and winner of The People’s Book Prize 2020/21 Best Achievement Award, Sara Challice, explains how you can offer help to others through volunteering and why it is important to get involved.

I think we are all aware of the countless volunteers who have rallied round to help during this last year’s pandemic. In giving just a little bit of time, we can make a huge difference for many.

I discovered our local charities and the great work they do, after my husband became disabled from a brain tumour. Although he was given six weeks of physiotherapy from our hospital once he came home, this service was stopped soon after and his file was closed. I was then left attempting to pick up a man twice my size from the floor as he continued to have falls and deteriorated further.

During this time, I was told of a charity called INS (Integrated Neurological Services). I had never heard of them – why would I? They were in our local area, and offered one-to-one physiotherapy plus more, and I would also receive support as a carer. We immediately registered with the charity and met a wonderful group of people, who helped support us both during our challenging times.

Had I not become involved with this charity and and the the great work they do, I wouldn’t have known about the difference they were making in others’ lives. I became a trustee for them and discovered that there were times they were financially hand-to-mouth. You would naturally presume these charities would just be there for us forever, as and when we may need them, but that’s just not the case.

Many who have been diagnosed with a neurological condition and those caring for them, are often isolated, left struggling at home – and you don’t need to be old! Any of us may suddenly need this vital support.

Charities and the voluntary sector help to connect and support within our communities – empowering and ensuring a better quality of life for many, even keeping them at bay from hospital.

But what do you, as a volunteer, receive from your altruistic actions?

If you offer to volunteer, it doesn’t have to take up much of your time. You can make a real difference in others’ lives – more than you even realise! You will most definitely gain knowledge and meet some wonderful and inspiring people. Plus, in being kind and offering to help, is actually beneficial for you. There is a term known as the ‘Helpers High’ – as you give to others, this distracts you from your own problems, releasing endorphins making you feel good. Helping others gives you a sense of purpose, boosting your serotonin levels which lowers stress and improves your mood.

And in offering to volunteer, this can create a positive ripple effect, inspiring those around you. I have certainly had friends and family who have become involved with the various charities I have supported over the years.

So if you’ve been thinking of offering a bit of time to help others, why not get in touch with either your local or national charities, for a cause that may be close to your heart. You never know, you may learn new skills, gain new insight and meet some wonderful people as I have.

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How to Survive the Stress of Caring, and Look After Your Own Health

Blog post written by author of Who Cares?, Sara Challice. Who Cares? has been shortlisted in the Non-Fiction category of The People’s Book Prize 2020/21. Click here to give it your vote.  

 

Caring for a loved one is, without a doubt, a kind and selfless act. Not only does it give another a better quality of life, it may even extend their longevity.

But whilst caring, your altruism could cost you more than your time and energy, because around 70% of carers fall either mentally or physically unwell – this included myself!

During my time out recovering, I realised I needed to make changes so as not only to survive my caring role, but also to regain my health and start enjoying life again.

So how can you overcome the stress of caring, to become more resilient and safeguard your own health?

1. Check in with yourself

As a carer, you’re often so busy being there for everyone else that you ignore your own health. And during the pandemic, this is ever more so whilst trying to talk to your GP, let alone arrange a hospital appointment – all time-consuming tasks that take even more of your precious energy and time.

You may even be suppressing your emotions, as you’re so busy tending to and protecting those around you who are almost certainly classed currently as ‘high risk’ for coronavirus. The pressure can build up, bit by bit, and go unnoticed until crisis strikes.

Do you have a good friend or family member you could check in with for a short time, once a week? This can be either face-to-face (socially distancing of course!), over the phone or via Skype. Or you could try journaling – writing down your feelings and the issues you’re experiencing. Observing what is actually happening can help lead you to making better choices for yourself, as well as for your loved ones.

2. Take a break

If you see each day as a list of chores – just doing this, just doing that – you’ll end up simply falling into bed exhausted!

Even though times are ever more challenging, you still need to have regular breaks, as well as have quality time. You’re not just here for a loved one, you are also here for you!

Try taking a short break between each chore, even if it’s 10 minutes. This will help you pace the day. You could jot down a list of things you enjoy doing during these breaks, such as reading a magazine, having a kip, or calling a good friend for a chat. You can then pick from your ‘break menu’, when you stop for a rest.

3. Focus on the good stuff

There is often a lot to deal with and carers are often in survival mode – focusing on the issues, to ensure everything and everyone is okay – but this does not make for an enjoyable life.

What are you happy and thankful for in your life? It may just be a hot shower that morning, or your comfy bed. It could be having loving and kind friends or patting your pet. If I’d had a bad day, I would climb into bed and think of five things I was grateful for that day. It always put a smile on my face and put me in a better state of mind before sleep.

Just remember to be kind to yourself and recognise all that you do. You really are amazing, being there for loved ones. Make sure you are also there for you!

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Dignity in Care

My mission to promote better care begins

Not all care services and nursing homes have a training budget or, if they do, it may be very limited. In an attempt to raise standards in older people’s services I offered some free training on ‘Dignity in Care’ and ‘Care Quality Commission Essential Standards on Quality and Safety requirements’. Both courses were snapped up quickly by some services. I wish I could have offered more.

Every morning waking up was as painful as the previous mornings had been, especially when I searched my brain to see what I was doing that day. I cried. I felt raw, still suffering after the loss of Mum and Aunty Ann.

That day I was delivering a training session on Dignity in Care to staff who supported older people. I had a large group of 20. Usually I teach up to 14, but I guessed that as it was a free course, the manager had put in as many as she could.

The staff came from a variety of cultures and were very knowledgeable. They shared their knowledge on which cultures liked different foods and liked to be washed/bathed differently and those who needed support to have prayer time.

I was pleasantly surprised when two staff members shared their stories on how and why they had had to report staff who had abused some individuals they were supposed to be supporting. They kept the details confidential and did not give any names of the individuals who had been abused or staff involved, but it was clear that some staff had been suspended on full pay whilst investigations had taken place.

I had the utmost respect for these two people for reporting their concerns. It couldn’t have been easy with the individuals concerned being part of their team, but they had done it for the welfare of the people they were looking after. These two staff members wanted and needed to talk about it and I gave them the opportunity in the break times to do this on a one-to-one basis with me. Before they started talking I told them that I was bound by confidentiality but also duty of care and would have to report anything I had concerns about. Confidentiality has to be breached if a vulnerable person is at risk of abuse or harm.

Back in the training session, the staff members were very much aware of their ‘duty of care’. They understood that all professionals have a duty of care to the people they support and that they needed to ensure that the individuals they supported did not suffer any unreasonable harm or loss. Some, however, found the issue of choice difficult to work with and understand. Many people, whether they have a learning disability, or are older, or have dementia, may need support to make informed choices, and this includes informed choices about risks. People receiving care must be supported and, with the aid of a risk assessment, enabled to fulfil their dreams, needs and wishes.

On my ‘Dignity in Care’ course I wouldn’t usually cover manual handling and hoisting, but since my late mother’s ‘accident’ with the hoist, I had been asking questions about hoisting at every opportunity I got. I asked about the law, the Health and Safety Act 1974 and, in particular, the Manual Handling Operations Regulations 1992. These are regulations that staff need to adhere to. Each individual requiring manual handling should be risk assessed and it will be stated on the risk assessment and in the individual’s care plan how s/he is to be moved, what equipment should be used and how many staff should be involved in the manoeuvre.

All was going well until I asked this question: ‘Do you always use two staff if it says two staff?’ Many said ‘Yes’, but one staff member said, ‘No, not always.’

I could feel anger brewing up inside and I wasn’t sure if it was because of her biased attitude or because of what had happened to Mum. (Probably both!) I pointed out the dangers, but she responded, ‘I’ve done it loads of times and no one’s been hurt.’ I finished this subject by reiterating what they should do and informed the Manager during the tea break that this member of staff needed to understand what was meant by safe practice and why it mattered.

This blog is taken from Suzan Collins’ moving personal story of fighting for justice in elderly care, Beyond My Control.

If this story has affected you or you want to share your stories of dignity in care tweet us and join the #carersweek conversation.