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.

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