Seasonal Memories

It’s a beautiful day…

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Beautiful Day September 2017

This morning’s discussions on the radio about the end of Summer and whether you take the astronomical or meteorological date as the official start of Autumn reminded me of a conversation with my dear Mum about this very subject.  Mum’s dementia affected her speech to such an extent that I had to be very creative to engage in an exchange of ideas. It was the need to use all the senses as communication channels that inspired me to begin the ReminiScent journey….

On this occasion Mum and I were taking a short walk around the village were she lived. It was a pleasantly sunny day for the time of year, just like today.  As we walked I admired the golden trees and noted the increasing number of leaves on the ground.  Heading back inside, I commented to Mum that Summer was coming to a close and it would soon be Winter.  She looked at me blankly – so I stopped in front of a young tree, pointed upwards to the yellowing leaves upon it and repeated my sentence more slowly.  Still she looked at me blankly so I stooped, picking up a crisp golden brown leaf from the floor. Taking  Mum’s hand I placed the leaf there and pressed it against her skin, repeating the sentence once more.  This time Mum looked at me, looked down at the leaf and smiled.  “Christmas” she said.  Just one word but it was enough and I was so thrilled to have thwarted dementia to connect with her in a shared Autumnal experience that delighted Mum because she had understood me.

Communicating with people who live with dementia can be a challenge.  For many families it feels frustrating and pointless.  Nothing makes me more sad that hearing a person comment that they rarely visit a relative “because he\she never knows I’ve been anyway”.  We need people to understand that dementia may well mean that the detail of a visit may well be forgotten almost immediately – but the feelings that the visit evoke will significantly impact that individual’s well being – so visits are always worthwhile.

Conversation and activity is the best way to stay connected with a person who is living with dementia. Below are a few tips to inspire you to keep relationships alive when dementia interferes.  Your relationship is a vital part of your relation’s quality of life.  Be inspired to keep it alive, even if they don’t remember your name, or know why you are there. You can still be a person with whom they feel safe or have a bit of fun.

10 Tips to help you communicate:

  1. Make eye contact & smile.
  2. Introduce yourself so that the person with dementia doesn’t have to work hard to place you.
  3. Remember that background noise can make it harder for a person with dementia to concentrate on what you are saying.
  4. Speak slowly and in shorter sentences. Always be prepared to repeat yourself patiently.
  5. Listen! Even if the story is one you’ve heard before, and before, and before…. Giving your attention is respectful and improves self esteem.
  6. Use multiple different ways to stimulate cognition; the sound of your voice, an image or artefact to look at, the feel, taste or smell of something. We can reinforce the concept we are trying to convey by using more than one sensory channel.
  7. If you struggle to know what to say, go for a walk, to talk about what you see, or bring conversational props with you. Topic cards are helpful and can be used as a game. A magazine or photograph gives a platform to launch a natter even if it is a bit one-sided.
  8. In a group, encourage the person with dementia to join in.  If they talk, stop what you or someone else is saying to listen as otherwise they might forget what they want to say.
  9. Don’t say ” Do you remember?” It puts people living with dementia under pressure!  Rephrase what you want to say to make a statement rather than a question.
  10. Never assume that someone doesn’t understand the conversation going on around them, even if they appear unable to join in.  You’d be very surprised just how much a person will absorb from family chatter. In our family, we stopped talking to Mum about the day-today activities of our grown up children as we thought it too difficult for her to understand. One Sunday she was sitting in the kitchen when my son visited. As he greeted her as he passed by, she said ” Do you like it?”  ” Do I like what Grandma?” he said, sitting down next to her.  My jaw dropped as she said ” Your job?” No one had told her that my son had now left university – but most clearly she had understood the conversations we had between ourselves!

 

Today – a poem by Jan Millward

Jan Millward is an amazing Activities Coordinator and writer, working in Dorset who regularly writes about her observations. She published the following poem  just after I wrote about individuality in dementia care. It really struck a cord with me!

Thanks to Jan Millward for permission to reproduce here:

Today

Today I’m feeling sleepy
and I want to have a rest.
Please leave me in my nightie,
I don’t want to get dressed.

I don’t want to play some bingo,
I can’t think of anything worse.
I want to sit here reading quietly
my little book of verse.

I’m feeling a bit lonely,
I would like to have a chat.
I don’t want to join in painting,
I never did like that.

I think I should be worried,
I don’t know what I’m doing.
But don’t sit me at the table,
I hate colouring and gluing.

Don’t leave me by the window,
with the others stuck in chairs.
I don’t know how to tell you,
I need someone who cares.

I am scared about my future,
the road ahead seems bleak.
I think and feel as normal
but I don’t know how to speak.

But if you really knew me,
you’d know just what to do.
You’d see me as a person
you’d stop me feeling blue.

You’d know I once was married
and I lived up on the Wolds,
with my two lively children
with no thought of growing old.

You’d find I loved the opera,
and you’d play my favourite tune.
You’d give me back my sparkle
and help me dance around the room.

You could chip away my worries,
and give me a reason to smile.
Because all the greatest carers
will go the extra mile.

But I am like a prisoner,
I no longer feel I’m free.
You can really try to help me
if you look to find my key.

Because I am still a person
with hopes and fears and dreams.
You may see an old frail body
but inside my soul still gleams.

So take the time to know me,
please seek and you will find.
The way to make me happy,
please peek inside my mind.

Those little caring gestures,
can change my world around.
and give me back a purpose,
My path can still be found.

Many thanks to Jan Millward© and NAPA Living Life for sharing.

NAPA Living Life on Facebook

 

Being Mortal – by Atul Gawande

Being MortalI was recommended to read this book by a visitor to our stand at the recent Health + Care Show in London. It is a compelling read, if somewhat unsettling at times.  It brought back many memories for me..and, let’s face it, end of life is not a comfortable subject to discuss.  However, as the title of book states and the author describes – there is only one thing certain in life and that is that we are all, one day, going to die – it’s just a question of how.  This well written book discusses the effect that modern medicine has had on the way people die, the impact this has on their quality of life and how our society provides the care they require.  He explores the American approach to eldercare and charts his own journey of discovery away from being the surgical “fixer” that he was trained to be in medical school, to being able to open very difficult conversations with elderly people and individuals with terminal illness  to identify what really mattered to them and what sort of care would help them achieve what matters most.

Definitely a must read for anyone who hopes to live life their own way, right to the end and for everyone involved in caring for people.

The Five Most important things…lessons from Shirley

Tips from a dementia carer

Dignity and respect are much used words in dementia care.  Understanding what they mean is very important – and made more difficult by the fact that, as this disease progresses, the definitions change slightly…

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Shirley was my mother. She was diagnosed with vascular dementia over 10 years before her death.  Initially she managed very well with us all supporting her, providing a guiding hand when she got muddled, then helping her stay connected with us all, extended family and friends.  Finally her cognition was affected to such an extent that she could no longer read her favourite magazine, watch TV, or join in the banter that she had always enjoyed.  Throughout it all, however, the essence of Shirley was always there, though sometimes you had to look hard to see it.

Shirley’s Five most important things:

  1. Hobbies & relationships: People with dementia still want to enjoy the things that they’ve always enjoyed. You can make them feel happy by helping to find a way to exercise, read, go outside, or visit friends. Encourage people to visit. Even if your loved one forgets visitors have been, the visit itself will leave feelings that will keep them content.
  2. I am not a child: Dementia does not lead to an automatic love of Bingo, colouring books or toys.  Do not infantilise people because of the disease.  Therapies work for individuals; watch and listen to see if they are relevant to the person you are caring for.  Chances are, if they weren’t interested in board games or jigsaws before dementia, they won’t be now!
  3. Purpose & praise: Find things to do that have a purpose and give lots of praise.  Gardening, dusting, hoovering, sorting the washing, hanging out the washing. Shirley used to love to do the ironing; it frighten me to death but she felt that she was helping me and that made her feel useful.  As her dementia progressed I used to quickly remove all the delicate or complicated items from the basket – but we kept the activity going for as long as we could.
  4. Looking as I should: Remember that your loved one is still the person you’ve always known. You can make them happy by ensuring that they are dressed and cared for in a way that you would expect them to do themselves.  Coordinate clothes, chose outfits that are comfortable, have their hair dressed and look after finger nails and feet. Everyone feels better about themselves when properly groomed.
  5. Talking and listening!  Using prompts such as conversation cards, photos, newspapers, or outings, talk to people with dementia normally , even if the response is just a smile.  When language had completely disappeared Shirley still understood the conversations around her.  Once, for example, when in hospital after a fall, a doctor asked me if I thought Shirley would object to him examining her, I replied that I had no idea how she might react, but that as he was a guy she  probably wouldn’t object as she liked men…To our mutual amusement, Shirley opened her eyes and laughed, enjoying the joke at her expense, even under those circumstances.

Loving Lavender

Diffusing the smell of relaxation

Lavender. What’s not to love about this plant?  The scent, the colours and the soft feel of it are all just wonderful. It is renown for the therapeutic effects of the fragrant oil it produces.

Caring for my mother, who lived with dementia, I used lavender extensively both in her room and in hand creams for massages. It relaxed both of us!

When Mum moved into residential care I used lavender essential oil in a diffuser in her room. It created a pleasant and relaxing atmosphere that the staff loved as well as Mum and other residents. The latter was a slight problem – as Mum did not take kindly to other residents entering her room uninvited!

Essential oils have been used for therapeutic purposes throughout the history of mankind. Before we could distill or manufacture, we burned or boiled oil bearing leaves and flowers to make them release their scent.  Herbal remedies are part of folk lore – many are now being discovered to have some scientific basis for the effects that have been perceived for centuries.

Aroma therapy is one way that we can contribute to the well being of elderly people, especially those with dementia.  Fragrant oils provide a stimulus for the brain as well as pleasantly scenting a care setting. Mum enjoyed hand “pamper” sessions and I frequently found myself performing massages on a whole group of ladies.  The social gathering that spontaneously happened around Mum and I during our activity led to much laughter and sharing of dollops of scented hand cream.  It was indulgent. It made everyone feel special. It was a dose of normality as well as a treat! I very much hope that, as dementia care becomes more widely talked about, emotional well being will one day be seen as just as important as the practical aspects of physical care.

The sense of smell is directly connected to the parts of the brain that are responsible for memories and feelings.  It is a natural connection then, that when the scent of essential oils are breathed in they stimulate these parts of the brain and influence your emotional health.

Scientific evidence suggests that aromatherapy with lavender may slow the activity of the nervous system, improve sleep quality, promote relaxation, and lift mood in people suffering from sleep disorders. Hence the traditional use of Lavender Scented pillows.  Studies also suggest that massage with essential oils, particularly lavender, may result in improved sleep quality, more stable mood, better concentration, and reduced anxiety. In one study, people who received massage with lavender felt less anxious and more positive than those who received massage alone. There have been several small studies that suggest that lavender aromatherapy may help reduce agitation in people with dementia – though too small to be statistically significant, I very much hope that we can encourage greater use of scent, particularly lavender to soothe and bring pleasure to people living with dementia.

Some scientists have said that lavender  stimulates brain activity in the amygdala in a similar way to some sedative medications!

Imagine!

See lavender diffuser here

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New study says meaningful activity improves quality of life!

Well – there you go!

A large scale trial led by the University of Exeter, Kings College London and Oxford Health NHS Foundation Trust concluded that Person-centred activities combined with just one hour of social interaction can improve quality of life and reduce agitation for people with dementia living in care homes, whilst saving money.

Ever since I became involved in caring for my mother back in 2011, I have fought against the general perception that a dementia diagnosis meant that normal life should go on hold, you suddenly develop a love of Bingo and live in some bygone era..

Many of the generally accepted activities in care settings are, in my opinion, rather patronising. They stereotype elderly people, particularly those with dementia, in a way that no other sector of society is subjected to.  As a regular visitor to my mother’s care home for the last 2 years of her life, I found that props provided a kick-start for conversations that attracted the attention of other residents.  My visits to my own mother were soon being regularly enjoyed by a whole group of people.  They loved to talk about their homes, gardens, children, the dresses they wore, jobs they did, foods they cooked and a whole host of details about their likes and dislikes. We were, intact, recreating the coffee mornings with their friends that they had always enjoyed!  I was able to enter into their world and, even if the same story was continually repeated, I knew that by showing an interest in hearing it, I was adding huge pleasure to that person’s day by giving just a small amount of mine. Talking is the very best therapy and listening is a skill that is undervalued in elder care.  Feeling listened to can have such a profound effect on a person’s self respect, making them feel happier and more content, thus avoiding conflict and the “agitation” referred to in the study results.

We  now understand why a person with dementia might recall something from their youth more reliably than whether they have eaten breakfast.  The connection between long and short term memory and the belief that people with dementia live in the past is not something that I can relate to.  Most of the people that I have met are forgetful, have various coordination or, like my mother, speech difficulties and enjoy reminiscing.  They did not, however, live in the past and I, as I see it, our job as a carer, is to try to keep people engaged in the world in which they live for a long as possible.  We can stimulate conversations by using images, sounds, scents. We can soothe by gently stroking an arm or hand.  We can bring the outdoors in to those who find changing environments stressful.  We can make sure their surroundings smell nice and ensure that they are carefully dressed ( repeatedly, if necessary) and groomed to the standard they would have wished before dementia.

It’s all about dignity and respect and seeing people and individuals – just the same as everyone else.