Walk a mile in my shoes...

I've met hundreds of people with dementia since we started on our own care journey in 2004 and each person I've met has taught me something new or interesting either about the way they've had to change the way they communicate or shown me how to improve my own communication skills.

I have always tried to smile and be open with each person I've met and have sometimes been rewarded by a smile returned or a hand squeezed.  On a number of occasions, I was unable to even make eye contact, as the individual was so encased within their own world.  As empathetic as I try to be and as hard as I try to imagine, I had no idea what the world looks like or how it fees to them.

With my own Nan, Gladys, when she would loop her sentences or repeat the same names over and over, I knew who she was talking about and could add context to the conversation. Having been close to her all my life and spoken to her about her vast family over the years, even though "Aunty Lizzie" and "Mrs Payton" died many many years earlier, through her previous stories about them, they lived on in our conversations and in Nan's world.

It's always been different with my clients - as much as I've tried to help, you can't hope to have the same impact or relationship in a couple of meetings.  I've often come away longing to find something that I could leave with the families to give them even a bit of what I had with Nan.

And then came along this book, "Elizabeth is Missing" by Emma Healey.

The blurb on the back reads:

"Maud is forgetful. She makes a cup of tea and doesn't remember to drink it. She goes to the shops and forgets why she went. Sometimes her home is unrecognisable - or her daughter Helen, seems a total stranger. 

But there's one thing Maud is sure of: her friend Elizabeth is missing. The note in her pocket tells her so. And no matter who tells her to stop going on about it, to leave it alone, to shut up, Maud will get to the bottom of it.

Because somewhere in Maud's damaged mind lies the answer to an unsolved seventy-year-old mystery. One everyone has forgotten about.  Everyone except Maud..."

This book took me on a journey into the mind of someone with dementia and beautifully and painfully illustrates the impact this disease has on the persons own perception as well as how it affects her relationship with family and friends.

Written from Maud's perspective, the insight is invaluable and I will be recommending it to everyone I come across and each family meeting I go to.  I'll tell them all - everyone who has a loved one with dementia should read this book - it is the nearest you'll ever get to walking a mile in their shoes.

About Liz Faye

Liz Faye is the Founder and Head of Care Services at Carepal Assist Limited
for further details go to:  www.carepal.org
or call on 0800 6891000




Click here to purchase via Amazon.co.uk

When words aren't enough

Many of us will have known somebody who has some form of dementia but very little is known about how to communicate effectively with those who suffer from it. Granted, there are different types of dementia, but again, this is a little known fact. The best explanation as to how to understand dementia better, came from a talk I attended, given by Pat Pope from All About Dementia. http://www.allaboutdementia.co.uk/ In all the years I have been working in this sector, Pat is by far the most informatative, knowledgeable person on the subject of dementia I have ever met.

She describes dementia as an "umbrella term" and each form of it, Alzhiemer's, Lewy body's, Frontal Lobal comes under the umbrella. Each type presents itself differently and so it is essential to establish a diagnosis of more than "you have dementia" so you can learn how to communicate effectively with your loved ones, when words aren't enough.

Pat is the person responsible for making the last few months with my Nan, who had Alzheimers, so special. Unbeknown to Pat, she has also helped many of our clients and their families, through the information we have passed on. We tell each of them about Pat and her company and I hope that our paths will cross again soon, as she is also a delight to be around.

We see many families who are often dealing with big emotions such as guilt and sorrow, but what causes them just as much pain and anquish is the frustration at no longer being able to communicate with their relative. As you may have read previously, what worked really well for our family, was living in Nan's world whilst we were with her. Not getting upset when she mentioned other members of our family who we had loved and lost. It became quite cathartic in a way. Talking about people who we'd lost as though they were still around. It brought them back in a way, albeit for a short time. We'd sit talking about what they were doing as opposed to what they had done. It made all of us smile and it helped Nan communicate with us and smile back.

That is another thing Pat taught me - a smile is Universal and shows that you are non-threatening. I visit many care homes in my line of work and there is nothing more noticable than how contagious a smile is and how much better you feel after forcing yourself to smile. We have had a tough year as a family, losing not only Nan but a wonderful cousin and friend to cancer. During this time, it was hard to go into work and looking back, on some days I don't know how I did it. I do know that on some of the worst days, when I just wanted to hide away and sink into my own grief, I walked into a couple of care homes with a very heavy heart. Putting into practice what Pat had taught me, I put on my best smile and walked inside, thinking how on earth I was going to keep this up for more than a minute. Yet my smiles were immediately reciprocated and one lady even took my hands in hers and kissed them!! She then started clapping, her beautiful blue eyes never leaving mine! My heart wanted to burst with the affection this stranger, who could no longer speak, showed to me and this type of thing happened over a number of visits to similar homes. It seems that it is true. There are no words that can lessen your grief, but the affection shown to me by those without words, undoubtedly helped and I will be forever grateful.

My Very Best Friend

Sat in a beautiful beer garden this weekend, enjoying the wonderfully rare sun, a family walked by us with their young daughter, no more than 4 years old. As the litte girl walked into the garden she looked at the family on her right and shouted very loudly to the elderly lady that was enjoying a day out with her own family. "Hello" she shouted and waved at the lady as she walked by and made her way into the hotel exclaiming "That's my very best friend in the whole world Daddy". The elderly lady was thrilled and everyone around couldn't help but smile as the little girl skipped away. It was as if the little girls happiness was infectious!

It was one of those rare moments when two individuals at either end of the age scale interacted and it was lovely to see. It made me smile as it reminded me of growing up with my Nan and Grand-dad who were my "Very Best Friends" but who were also wonderful teachers!

As I've mentioned, our Grand Parents and even our Great Grandma were a big part of our lives growing up and although they didn't have any formal education to speak of themselves, they were fantastic, although unorthodox, teachers. I was taught to count with dominoes, taught to read by reading Woman's Own & Woman's Weekly out loud to my Nan before bed and taught patience by learning how to play Patience!

I was reminded again of unorthodox teaching methods when earlier this week, like many across the country, I attended a Home Instead Dementia Awareness workshop (with Ruth, Peter and the team at East Lancashire branch), as part of National Dementia Awareness week. We were shown new methods of how to interact with dementia sufferers. We were also taught so much about the disease and the ongoing research into the causes and the search for a cure. One of the most powerful sections was on how to effectively communicate with dementia sufferers. I put these methods into practice on my visit to Nan earlier today.

When I arrived, Nan was sat there in the centre of everything, people buzzing around her and wanting to be near her so I joined the crowd and took my place. Nan loves to talk about her family, especially her Mum and Dad and family and in this time during early evening, she usually talks happily about them and what they've been up to; randomly picking out words and mini sentences that don't join up. This evening was different.

As shown on our dementia awareness course, I'd taken in a couple of images that I'd printed out of things that I know Nan likes - a big cart horse, a flat iron, flowers, a mangle and a picture of a shop we would all visit when a wedding or event was coming up, Stewarts of Ardwick. It was just like the sit com "Are you being Served" and my brother and I loved it!

Showing Nan the pictures was nothing short of amazing! She looked at the horse and after calling it a "beautiful Gee Gee" went on to tell me that her Dad kept horses, which he did. She told me that "he looked after them really well you know" She also looked at the iron and said "ooh that looks like a good iron".

What made me smile the most, was the fact that Nan reminded me of something; on looking at the picture of Stewarts of Ardwick, she laughed and said "Remember all those stairs" and pointed to where the two staircases were that we would all have to stop after the first long flight for a breather. That was a memory that I had totally forgotten, filed away until tonight. After showing Nan the pictures, she did something she hasn't done with me since her diagnosis and she started asking me questions; "are you working" "what do you do now" do you like it". The question and answer session lasted about 15 minutes and it was an absolute joy!

It may seem a strange thing for you to take printed images with you on your visit to see your loved one, but like Ruth at Home Instead said it would, it triggers memories and gives the person a different focus.

All the while I was sat with Nan, I was producing maltesers, one at a time and she looked at me each time like we were friends, conspiring to eat chocolate whilst no one was looking. That's exactly what we are - friends. Of the very best kind.