Saturday, 9 November 2013

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. 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.

Monday, 15 July 2013

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!!).

Saturday, 22 June 2013

Unforgettable Carers Week & National Care Homes Day

Carers Week

Working within the care sector, we have the opportunity to meet and directly help those who need it most. This was evident when we were fortunate enough to be a part of Carers Week "Prepared to Care" event, which we held at Sainsbury's Clitheroe. We were really pleased when their Client Services Manager, Craig Lister happily gave us a prime position in his busy store and made an ordinary Wednesday in June one that will be unforgettable for many reasons.

Reason 1 - The chance to connect directly with Carers

Having the opportunity to meet so many amazing carers and the people they looked after, without hardly a thought for their own health or sanity. Many were amazed that there was actually a week dedicated to ensuring that they had access to a host of services that could make their lives easier. We gave leaflets and stickers out by the dozen!

Reason 2 The kindness of strangers

Despite the fact that we had no collection boxes and were only present to GIVE information and advice, many people walked up to us, ready to donate to a cause even before they knew what were doing. One lovely man even said "I can't pass by a collection pot" with his hand full of change! When we said we couldn't accept it, he walked away laughing as I don't think many people have refused his donations before! (We have since discussed who our nominated charity is going to be and decided on Dementia UK, to support the fantastic work the Admiral Nurses do).

Reason 3 The one that got away

One lady walked past with a full trolley of shopping and when I offered her a leaflet she didn't take it. She looked at me with tears welling up in her eyes and held my hand so tightly, as though her life depended on it. She told me in as few words she could manage, that she was going home to put her husband into care. She was totally bereft and with tears flowing down her face and welling up in my eyes, she let go of my hand. I tried to gently talk her into coming back in the store to talk to me, so I could help her in any way I could, but the emotion just got too much for her and she walked through the automatic doors. I wanted to run after her into the car park but I could see that she didn't want to speak about it. I watched her shaking her head from side to side as she put her shopping in her car and drove off. The emotional pain she was feeling was tangible, even from a distance.

I have run through my head on many occasions since, what I would have said to her had she been able to stay a while; I would have tried to give her some hope that the future for her and her husband, although nothing like the life they have had in the past, could still have moments of joy and laughter. Just like day to day life even without a care need, there will be tough times, but that she would still be able to hold his hand, hear his voice, and make him laugh. I would have told her about all the wonderful support there is out there for people going through the same thing she was; the amazing experiences of care in a care home that I witness every day but that never gets talked about on Panorama. The people who I am lucky to call friends who run care homes and love, talk and care for the residents as though they were members of their own family. I would have told her that there was hope that her days ahead would get easier.

I want to say to whoever is reading this that is struggling on their own with a loved one who they are caring for, please don't struggle on. The situation can get better, help is available and you don't have to continue on your journey alone.

National Care Homes Day

This was a different event altogether! We had reserved a table at the Thornton Hill Care Home's Annual Summer Fair. We pitched up to find a fun filled foyer, tombola, raffle, cake stall, bottle on a string game and we joined in by raffling off a huge bear called Riley, complete with Carepal T-Shirt. There was even an ice cream van that pulled up right outside to offer all the residents the chance of a traditional ice cream cornett.

It would serve the Government & the public well to be able to see how good care homes are run. How the residents and families feel and how uplifting an experience it can be when care is delivered in the right way, by the right people!

Sunday, 26 May 2013

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.

Sunday, 19 May 2013

What's My Line?

In both my personal and professional life, I have been fortunate enough to be invited into various homes and see families at their rawest. In times of living grief, post diagnosis of dementia. Vascular, Alzheimer's, Lewy Body's are all very different diseases yet they bring about two of the most powerful of human emotions; grief and guilt.

The grief at losing the person you remember as yours and the guilt at having to bring outsiders in to advise you as to what to do; the guilt of not already knowing what you feel you should; the grief felt at the family never being the same.

Being allowed to be part of this private time, yet be detached, allows me to get to know how the various family members are feeling, help them come to terms with the situation and to help them begin their new lives. Different lives, but lives all the same. Same actors, different scripts.

Strangely, the grief at the loss of the person is the lesser and easier emotion to discuss. Many families are open about their loss of their relative in terms of how they used to be; positively glowing with pride when they recount tales of heroism or fortitude against a tide of bad luck, how they used to look after them, the fun times, the hard times, any times, as if time spent together is over. Only from my own experiences can I tell them, hand on heart, that these times live on forever in our memories and although they are harder to find and don't happen as often, more of those special moments can be shared, even after a diagnosis of dementia.

The harder emotion to tackle is guilt. It is as if it gets stronger each time it is acknowledged. Growing in strength and the hold it has over people, making their shoulders shrink and their tone lowered, makes it easy to recognise it's presence yet harder to reduce.  It doesn't dominate for ever though and this is important for families to understand as early as possible. This phase will pass.

In 2004, my Nan was diagnosed with Alzheimer's and had to go into care. Looking back now, she had been showing signs for many months that something wasn't right. Having had no experience of this disease or it's symptoms at that time, it wasn't difficult to see why we took the path we did. My Mum, her only daughter, looked after her in her own home, caring for her ever day until it was clear to see, they both needed help.  We struggled through the maze of social workers and respite homes until we found the one that could meet Nan's needs, where she lives to this day, 94 years of age, happy, content and very well cared for.

When a family comes to me for help and advice, once they've told me the situation and I've told them how we can help them, we run through the situation step by step. One foot in front of the other, one step at a time. It can be totally overwhelming to be told that your relative can no longer look after themselves and they have to go into care.  The world is suddenly upside down. I'd like to think we play our part in turning things the right way up. Guiding people along a new, different path and help them to see the happy times ahead.   

Once a routine is established for all parties, the guilt isn't as prevalent.  It sometimes feel like me and the families take a huge sigh of relief - we know where Nan is, we know she's looked after, she still smiles, still shouts, we know where she sleeps and we know the names of her carers.  What takes longer is establishing the best time to visit.

Realising the smallest things can and often do make the biggest difference.  I have visited my Nan many times of the day and evening and it is only recently that I have found a new, perfect time to visit her - between 6pm and 6.30pm. Why, well she is relaxed, calm and for whatever reason, able to hold a conversation. Granted, it isn't like the conversations we used to have, but these new times are special nonetheless.  On Mother's Day I visited at this time and for the first time in years, she read her card out loud - I was stunned. She looked at the images on the card, commented on the colours, named some of them and even went on to read the bag of chocolates I had taken her. This would have been impossible at say 10.30am or even 3pm. It was as if her mind was rested, powered down, so she could focus on what was going on.  I have also found visits to be a wonderful experience if I just let myself live in Nan's world for the whole of the visit. I talk to her about her Mum and Dad and my Mum and the conversation has a flow to it. Being a very house proud lady, my Nan comments on the decor of the home regularly - how nice it is, isn't it clean etc proving that she is still the same person. House Proud, compulsive cleaner Nan, not just Nan with Alzheimer's.

My Grandparents played a massively active part in my brother and I's upbringing and we used to love hearing my Granddad's tales of his time in the Royal Marines and him tease my Nan about her time at Avro, helping to put wings on Lancaster Bombers. It's what shapes your time with people, who they are, what they did, how they did it. We shouldn't forget these aspects of the individuals and make sure that the very essence of them doesn't get shrouded in grief for a lost era.

Just because you can't remember something, shouldn't mean you no longer want it.

I once overheard that a client lovedChanel No 5 talcum powder and so, I made sure that when we did the care funding plan, that an allowance was made for this quarterly cost. It makes me smile every time I think of it.

I  have another gentleman client who likes a drop of brandy before bedtime and again, it is my favourite line in the excel spreadsheet.

Writing this has made me think what my line in the excel spreadsheet would be; despite many loves, it would have to be designer perfume and music. I don't think I could live without either and why should I, just because somebody else is making decisions for me.

I would love to hear from you if you'd like to tell me what your loved ones line would read. (Nan's is chocolate. Especially Maltesers.) What would yours be?

Liz Faye
Head of Care Services
Carepal Assist Ltd