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.

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

www.carepal.org