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How to stay standing and happy alongside the person you care for with dementia

I’ve worked for many years in the field of mental health, and more recently with people living with dementia and their carers, but nothing prepared me for the emotional reaction of becoming a carer myself.  First, my mother developed vascular dementia. She died suddenly four years ago, relatively early in the progress of the disease, but left my dad alone with the beginnings of Alzheimers.

I know the health and social care systems well, but have found it incredibly hard to deal with them when setting up care for my dad. It doesn’t help that my own mental health is fragile. I’d like to share with you some of the insights that have come to me along the way, and things that I have found helpful. This is not practical advice on services that are available – the excellent Alzheimer’s Society or Dementia UK or one of the many carers’ organisations can provide much more comprehensive advice than me – but more an emotional take on what does and doesn’t work.

I have called these posts ‘Tentative Tips’ simply because I am no expert and everyone finds their own ways of coping. They have already turned into a series – the simple list I had initially envisaged expanded and expanded and who knows where it will end! Take them for what they are – ideas shared in the hope they might prove useful to others as they have proved useful to me.

A FIRST THOUGHT ABOUT LANGUAGE

I was twittering the other day and picked up a link to the Dementia Words campaign run by DEEP and the Dementia Action Alliance. This campaign is asking us to consider the language we use when discussing dementia. There is a DEEP guide called Dementia Words Matter written by people with dementia. They talk about ‘curl up and die words’ that make people flinch and create stereotypes – words such as ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’.

Words are so important. How we speak about someone, or about our experience of caring, imprints itself onto our minds and the minds of others. If we are negative, we transmit negative feelings that can make the whole experience worse for everyone involved. It is like my experience of depression: the more you name it the bigger the hold it has over you. But in just the same way that you can generate negative ideas and stereotypes through words, you can also generate positive ones. I am trying to value the love, humour and new relationship I have with my dad since his dementia – I don’t always succeed, but we are on a journey together and learning all the time.

Thinking more about this even made me change the title of this blog post. I had originally called it ‘how to stay sane while caring for someone with dementia’ but felt the connotation of being driven and mad by caring was a really negative one and that this also labeled the carer and the person cared for as separate, when, in fact, we are all human beings and in this together.

FIND COMMON GROUND – AND MAKE TIME FOR IT!

What are the things that you both like doing? Find things to share. It took me a long time to work out the sense of doing this simple thing! When I stay with dad I now earmark visits to the seaside, a classical concert, a theatre trip, or a meal out somewhere, as these are things that we both love. We also enjoy a good view of the countryside (even though dad is partially sighted) and walking – well, strolling really – the dog. Over time I have learnt to add a couple of extra days to my visits so we have time to fit in the nice things as well as dealing with the practical ones.

CHOOSE THE PATH OF LEAST RESISTANCE

It must be scary finding you can’t do some things anymore, or that people are telling you this. Don’t try to face the person you are caring for with their lessening abilities, even though it is very easy to fall into doing this. I now try to actively avoid situations that confront my dad with something he cannot do. I used to end up trying to justify why, for instance, I was paying a bill for him – pointing out that he had left previous ones unpaid – but this simply upset him and he would call me a liar. It was unpleasant for both of us. I have learnt it is kindest and easiest to say nothing, and simply pay the bill quietly without mentioning it.

LAST MINUTE CAN BE BEST

My dad was the person who always loved to look forward to things. He would gain weeks of pleasure from knowing one of his daughters was due to visit or that he was going for a day out. Now, as time has gone on, he is likely to get confused or anxious – worrying that he can’t remember the details correctly or that someone has forgotten to put the date in his diary. He comes back to this time and again and is disappointed when he finds that it is not today that I was due to arrive but next week. Dad has finally arrived at the point where last minute can be best.

Discussions at the Carers’ Support Group I attend, and with carers I have met through work, highlight other problems that can arise from alerting someone with dementia to something in advance. For instance a carer’s partner, having been reminded a few times of an activity they would be going to soon, simply got upset and declined to go at all when the time came. This was an activity that they had enjoyed immensely the previous week and the carer had expected that the promise of going again would give them something to look forward to. In another situation someone had said ‘why would I want to do that?’ when their wife suggested a family outing they would normally enjoy. Other anecdotes raise similar issues and it is clear that this is a common problem. For many carers the solution can simply be to not say anything at all until the last minute. ‘Let’s get your coat, we’re off to Singing Group now’ perhaps feels a lot less threatening to someone who cannot keep track of dates than the thought of facing the same thing at some future time.

DON’T BEAT YOURSELF UP FOR FAILING TO FOLLOW THE ‘TENTATIVE TIPS’!

I’m never very good at practicing what I preach, even if I know it makes sense! We all mess up. Just stop, take a deep breath, make a cup of tea, and start again from square one.

(There will be more ‘TENTATIVE TIPS’ in future posts.)

© Anne de Gruchy