Tag Archives: Carers

More than (Dementia) Friends

There’s not many times I look over the Border and think ‘I wish we had that’.  So I was delighted when Dementia Friends launched in Scotland and even happier to get my badge. Already a great success, Dementia Friends is a wonderful resource and a very quick and easy way of helping folk find out more about dementia; a boon for our aspiring Dementia Friendly Communities.

But it’s just a start, we need more.

In the world of paid caring, they already have quite a developed approach to using people to make change happen. Health and social care services staff have a Dementia Champions Programme which supports people to act as change agents. There are also Dementia Ambassadors who help spread knowledge and understanding about dementia.

When I read about these schemes I wanted to help, after all, walking alongside our loved ones with dementia gives us a very keen appreciation of the importance of respect and understanding amongst the paid workforce as well as the community dimension. We’ve got concrete experience of what makes a difference and are a powerful force for change. We can tell you in words of one syllable why a smile matters.

I was amazed to find that the scheme doesn’t include unpaid carers, I can’t be a champion or ambassador. I was gobsmacked. They should biting our hands off. In the words of the late great Ian Dury, what a waste.

A few e mails and I soon found people who got it and  I was introduced to the Equal Partners in Care ( EPIC) programme. It’s all about helping paid staff in health and social care settings work more closely and effectively with carers.

A short while later, Val from my Mum’s care home (who’s a Dementia Ambassador),  Scott (Mum’s then key worker) and me were interviewed by Gill for EPIC. We each talked about how by working together Mum got great care, I was happy and Val and Scott loved their jobs. It’s just better for everyone in every way.

It felt like a celebration and a chance to say how much we value each other.  Like when Mum gets upset when I leave, Scott comes over and says ‘Goodness gracious me!’ Mum giggles and says ‘Great balls of fire!’ And the pair of them, and everyone else in earshot, beam. Mum sees his smiling face, feels at home and waves me off quite happily. I leave knowing Mum is happy and safe. I never leave with that horrible guilt and worry about what happens when the door closes behind me. I don’t want anyone to leave a loved one like that.

I couldn’t do their job, but I am so glad people like Val and the other staff are round to help me and Mum through. They walk beside us and I can’t begin to explain how that helps.

It’s so important that the voices and lived experiences of people affected by dementia are part of the change process in health settings not just in the community. Friends are great, but we also need powerful Ambassadors and Champions; a growing number of people living with dementia across Scotland want to have their say and we all need to be included.  We are an important part of the change process. Most people who live with dementia – before or after a diagnosis, unpaid carer or family member – are in a community. People in residential care and hospitals are still part of our communities. The paid carers of the future and people who might get dementia in the future are in our communities, in schools, jobs, shops. We have to be a more powerful part of the equation.

The world needs to change too and we need to do it together.

So welcome to Scotland Dementia Friends. Now let’s have the rest. Please.

Cheers

Sue

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Tooth and claw

I’ve never met someone who lives with dementia who hasn’t got a horror story or two about teeth or toenails. These small, but potentially troublesome bits of body can be a veritable nightmare when you’re caring for someone with dementia and they are usually the bits that the health and care systems don’t want to touch with a bargepole. If anything exemplifies the need for health and social care integration and a focus on prevention it has to be teeth and toenails. If you’re eating your breakfast, look away now. No I won’t use photos but the mental images are just as bad.

Teeth. The very thought of teeth and dementia makes my jaws clench. A lifetime of 6 monthly dental visits, hygienists and daily brushing and flossing counted for nought when dementia set in. Mum not only forgot to brush her teeth, but the 15 minute care slots in the morning and bedtime were just not long enough to even begin to tackle teeth, how could they be?  Over a period of 3 or 4 years, those chocolate biscuits and the excessive amount of cake older people are fed all the time took their toll (see a future rant about cake and older years!).

By the time Mum got into the care home and a daily dental regime was put in place, the damage was well and truly done. Mum has had more fillings in these last few years than her whole life and then teeth started to fall out. She would be heart broken if she knew, she always brought us up to take care of our teeth. If we ever got to the stage of her needing all her teeth out (God forbid) false teeth are likely to be a problem – what if Mum can’t remember that she’s got false teeth and takes them out or gets a fright with them in?

It’s not vanity. An infection is a nightmare. It may get missed because people assume it’s just the dementia;  if you’re living independently at home with dementia taking antibiotics correctly is unworkable (even with carer visits). You have to watch carefully for signs of pain whilst your loved one is eating – not conducive to a relaxing meal. All too easily a minor bit of tooth decay becomes something serious with a hospital visit looming at the end of it.

Our local dentists are great and know well how to support Mum, they really do epitomise person centred care. They explain what’s going to happen and explain what they’re doing as they do it. They are calm and very very patient. But what if something hurts and Mum asks them to stop mid treatment and won’t let them continue? As I’ve got power of attorney I’d have to decide about restraint, of my Mum. It doesn’t feel right. Luckily Mum knows exactly what to do when she gets in the dentist’s chair and she’s very good at doing what she’s told – it’s become one of our family jokes. What’s it going to be like for my and future generations when dentists are dealing with complicated things like implants, root canals and bridges.

A lot of carers I speak to have found their own dental health suffers along with everything else, creating a whole new generation of problems now and for our older years. I too have had more tooth problems as a carer than all through the rest of my life.

Toenails are another bugbear. They’re not physically or psychologically like finger nails. They’re often quite hard to cut, hard to reach and are tucked away from sight in socks and shoes. Folk are often embarrassed about their feet and a bit wary of who gets close to them (sometimes with good reason!). Toenails are fiddly and feet can be sore or tickle, toenail cutting becomes a skilled job. Unnoticed toenails can grow and start causing all sorts of problems from falls to cellulitis – both of which happened to Mum more than once. Yet again, A&E looms with all it brings with it.

Luckily Mum and I have survived another dental nightmare, thank goodness. Fingers crossed that’s it for now.

Take care

Sue

Sue

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Carer Brain – Looking Inside the Brain of a Carer….

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It’s Carers Week and there’s lots of stuff around about how us carers manage to juggle caring with a whole range of other things. Some folks manage, some struggle, some topple over the edge. There are many powerful stories about our trials and tribulations and the hard work we put in to making it work for the people we love.

What’s not always as visible is what caring does to our heads and as a psychologist I’m very interested in that, so I thought I’d do a spot of reflective thinking about the impact that caring has had on me and how I think.

  • When you’re a carer things are pretty black and white and priorities are crystal clear, especially at crunch times.  Caring for parents with dementia and other illnesses means that at any moment anything can happen. A fall, an exploding microwave, a lost key, a distressed and frightened phone call.
  • When you’re a carer, you dread what’s coming, you’re always expecting something to happen.  I still freeze when the phone rings, especially at care home getting up times and late at night. Is this the call? My heart stops, dreading who might be on the other end.  One morning on the way to work I got ‘the call’ about Dad. One day it will come for Mum.
  • When you’re a carer your head is full of lists and appointments. You have total responsibility for someone else’s life. It’s not just my dentist, optician and GP appointments, the hospital appointments that come with health problems and the general ageing process. Pick up medication, buy milk, do the washing, pay the Day Centre.
  • When you’re a carer, things can get pretty emotional.  Walking alongside loved ones who live with dementia brings with it all that is the best and worst of being human. The journey takes us to the heights and the depths of our emotional life. Love and concern  for my wee Mum can come rushing in at any time, almost bowling me off my feet. Mum’s bravery, her resilience and determination to find a way round dementia, her fight to stay independent and in control, her vulnerability, the kindness of her carers and friends, the thought of where dementia will take her, the worry that I might get it. Of course I’m emotional, of course at times it gets too much. 
  • When you’re a carer you’re always asking favours and always grateful for small kindnesses and mercies, you owe everybody.  The carer Fiona who read Mum my daily diary note in the morning and initialled it so I knew she’d done that; Alf, the neighbour who kept a friendly eye on things.  The boss who never asked any questions if I had to leave early or flex my working for hospital visits.
  • And of course there’s the guilt that haunts you whatever you do.  Although Mum might forget I’m her daughter, she still knows and loves me. At this stage in her journey, I can make her happy just by holding her hand and making her smile. I feel constant guilt that I’m having a run, walking on the beach with Ali, writing this blog, doing dementia friendly work when I have a Mum who I should be with. I will have life long guilt that somehow I am to blame for the awful experience Dad had in a nursing home until we got  him up to Fidra in North Berwick and he had 6 final, happy months.

None of these are unique to caring for parents, or dementia or disability, all of these are a normal part of caring, full stop. What people can fail to appreciate is the intense vulnerability of people with dementias; their total dependence on how they are treated by the people around them and that vulnerability increases day by day. A large part of being a carer protecting our loved ones from the inadequacies of the health and social care system, a system which often removes the humanity from the people who work in it. That’s what Christie was about for me, reminding us that it’s really all about people and how we treat each other. Outcomes don’t happen by magic, people are what it is all about and caring for people dementia means there is no way of avoiding this simple truth.

I didn’t truly understand what vulnerability meant until I saw Mum, tiny and frail in the corner of a hospital ward where she’d been most of the day after having been ‘discharged’. Someone forgot to tell me. She sat there in her nightie, trying to be invisible; the fear, confusion and pain in her eyes haunt me still.  I’d been at work, catching up on things and arrived for evening visiting thinking she’d been safe and cared for.  Every day until Mum went into the Abbey, her lovely care home, I rang her from work at 9am.  By 9 she’d be up, got herself sorted and would be expecting the carers. I wanted her to have a friendly loving voice to greet her in the morning and help her orientate to the day ahead. But there were many mornings  when there was a crisis I had to deal with there and then; the carer hadn’t come so she’d not had medicines; there was a leak in the bathroom; she’d had a nightmare she believed was real; she was searching her 3 rooms for my Dad. There were times when I had to put the phone down on a very confused and frightened woman, praying that the carers would turn up soon because I had work to do, planning my exit if they didn’t. Then I’d have to walk into a meeting as if there was nothing wrong.  Sometimes I just couldn’t compartmentalise enough.

Carers often live on the edge of a precipice; anything can happen at any time, you have to be always alert, always ready to act, hoping for the best, expecting the worst.  None of us know what will happen next, the difference is that for many carers we’ve a pretty good idea of what’s ahead, and it’s scary.

Now that Mum’s in a lovely care home, I’m not her only carer. Looking back I wonder how on earth I coped when I had a full time job and Mum was ‘living independently’.  I suppose the answer is that in the end I didn’t, I had to leave my work and my health and well being were pretty well messed up.  Lots of carers try their best to make it all work and just can’t, lots of us leave our jobs because we can’t stretch things any further, we go ping.  Caring undermines our health, takes up massive amounts of time, energy and brain power.

Caring takes over your brain, hijacks your emotions and gradually your confidence and your capability can get undermined.  When you can no longer do the things  you’ve always taken for granted, when you find your tolerance and resilience flagging, confidence plummets. Caring can take its toll and something has to give.

BUT now that my caring role is manageable and we are Mother and daughter again, I can look back and reassess.

  • I know my priorities and can be quite ruthless in deciding what to do and when to do it
  • I can juggle time, thoughts and diaries like a demon and when things go splat I just deal with it and carry on.
  • I am agile, I can adapt to almost anything that comes my way
  • I am gradually re building my confidence.

Caring for parents with dementia has been one of the most remarkable experiences of my life.  It has highlighted to me that what really matters is how we treat our fellow humans, especially the ones that are most vulnerable and sensitive. We’re all cheered by a smile and depressed by a telling off, people with dementia just show it better.

Carers of course need more formal support too and with our ageing population more and more of us will be carers at some point in our lives. And more and more of us will probably need cared for in our later years. The country can’t afford to lose carers from the workforce because we’re knackered or have to give up our jobs from ill health. The health services can’t afford lots of worn out sick carers who have given so much caring for others they can’t care for themselves. We’re going to need understanding, good quality services for our loved ones; support to help us stay in work or return to work after our caring role is done.  It’s do able and essential – a lot’s  been done for parents (though parents/carers of disabled children struggle and don’t get the support they deserve), surely it can only be a matter of time before we start to adapt things so that caring at the other end of life is supported too. Fingers crossed.

 

Take care

 

Sue

 

 

 

 

 

 

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