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.

Home: Gladys Hughes 4th October 1918 - 23rd June 2013

It has been a very difficult couple of weeks for my family and I, as we all had to come to terms with the fact that our wonderful Mum, Nan and NannaG is gone. Despite her ailments that affected her memory and her pace, her true personality regularly shone through. Even down to the fact that she still loved having her nails done and painted pink! To the very last, Nan was Nan, even arguing about which pyjamas she wanted to wear. As ever, Nan got her way and fell asleep in her choice of pyjamas, forever.

As much as it's been painful to say goodbye to a very much loved lady, it has also been time to reflect on her amazing care and the difference it made to all our lives. For over the last 9 years, Nan lived at Marion Lauder care home and what a time she had!

When Nan first moved into the home, we hated leaving her there and for a while, we were really unhappy about the state of the home and that Nan didn't even seem to be wearing her own clothes!! Thanks to a change of ownership, we saw standards rapidly improve and also Nan's demeanour.

She walked the halls, fired the bosses and saw the home as though it was her own. It was her living room and everyone in it, worked for her. The best part is that from the management to the staff to the auxiliary's - every single one of them played along and allowed Nan to be "the boss". Going as far as when she stormed into the office in the early days, interrupted the call the MD was having, threw his phone down and ordered him and his co director out of the building, with some choice words, they both duly obliged. After walking around the block, walking back in the home, to be greeted by a beaming Gladys - "How lovely to see you both, I've not seen you for ages"!

The essence of this type of care is love. Simple as that. Nan had different carers over the years and we would often call in to see her, only to find her in the lounge with a host of different carers, sat with different residents. On one occasion, Nan had a carer next to her and one in front of her. The one next to her was chatting away to her and the one in front of her, well all Gladys was doing was sorting her collar out and stroking her hair, over and over. Fantastic to see time being given to keeping residents calm and happy. As the visit went on, everyone started talking to each other and the carers all started to ask about different names Gladys had mentioned as they wanted to know who they were. It was evident from this that they handn't all just spent time with Gladys, they had listened and really chatted to her, in her world of many many years ago. They were able to talk to her about her nephew's and nieces, her Mum and Dad and her daughter and grandchildren. Thanks to them, they helped Nan live on in this wonderful "time gone by" world she had lived in once and that her mind had recreated.

When we would ring to ask how Nan was doing, they reply was usually the same in as much as "she's on form today, she's fired me twice". If we were told that, we knew that all was well. Once when I rang and expected to be put through to the nurses station and said, "It's Elizabeth, (she never knew me as anything else) Gladys Hughes' grand daughter, just ringing to see how Gladys is doing?" the reply came back "I'm doing fine thank you, how are you?!" Priceless.

As a family we know that care, no matter how appropriate or fantastic, can never totally remove the guilt that is felt when you pass a loved one into the care of others. It is only looking back with a clear head and a heavy heart that I can see that the staff at Marion Lauder were Nan's adopted family and family they were. Eleven of them attended her funeral, (we were told they had to draw a ballot as the whole shift wanted to attend),and were as much a part of the funeral service as her immediate family. They hurt with us and laughed with us, at the tales "of what Gladys did/said". We were so fortunate that it was like that for us.

The fact that Nan was 94 when she died means that her passing isn't a tragedy, though we're hurting and grieving, we all have fantastic memories of this feisty lady whose essence remained until the very end.

One of the staff members said as we left the grave side, "We'll never forget her". The truth is, we'll never forget you either!

(Readers of the previous blogs will understand why Nan was sent on her way with, amongst other items, a bag of Maltesers in her pocket!!).

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.