I have been a hospice and palliative care nurse for over 22 years. For 12 years of this I have also been a part or full-time carer for my elderly parents with my sister and brother. In August 2014, I took a short career break to concentrate a little more on my mother who came to live with us four years ago.
Living well is a key part of the philosophy of both the hospice and dementia movement and my mother had reached a time when she needed more help to live well until she dies.
Along with caring for Mum, moving house, schools, pets and husband I set myself some personal goals: write a few publications (1,2,3), keep my Twitter presence (@learnhospice), finish my advance care planning PhD thesis (almost) and become a Dementia Friend (achieved).
Carers Week has provoked me into thinking again about how communities as well as institutions can support carers.
To be clear: even though being a carer can bring great joy, it is really hard work. Being a carer hits you on all fronts. It steals your time, challenges your self-confidence and esteem and changes your social role, finances and feelings.
In my case it has been part of my life for 12 years. My teenage daughter has only had two years when her mother was not a carer and has always had to come second to the needs of another. She is part of the infrastructure of support (she is very astute in recognising when I am feeling a bit overwhelmed), needing her own support as well.
Finding help and support is difficult
I am not always sure what we need. I feel guilty for needing support and worried that if I use it all up now, what will I do if I need it later? As well as worrying about being a complete bore and droning on about the challenges of my day.
More importantly, if I do not look at my own resilience needs, I can’t look after Mum well and enjoy or notice the good things in our shared day (not to mention be a good mother, wife or friend).
Finding support that works for us as a family is tricky. The structured day or personal care doesn’t really work, as Mums’ independence, mobility and clear thinking can change from hour to hour as well as day to day.
What I do know is that when she has constant companionship she is much happier, alert and independent.
What we need is some reliable, flexible support workers who can spend time with Mum and entertain her in whatever way takes her fancy that day, eg the library, café, hairdresser, a drive around, playing board games or just hanging out.
Adelina Comas-Herrera, academic project manager of the MODEM project, shared a brilliant piece recently about care vs entertainment in dementia – and I could not agree more.
Planned entertainment gives Mum new things to talk about, maximises her mobility, stimulates her language and also would give me an opportunity to consistently work and contribute in other ways.
Mum hates the thought of joining some ‘old person’s club’, but telephone calls for a ‘gossip’, invitations to concerts and plays, afternoon teas and lunches out make her feel that she is still part of the human race, rather than a burden to be ‘done to’.
Little and big actions can make a difference
The Dementia Friendly Communities and Dementia Friends initiative have a philosophy about turning individual and community understanding into action (big or small).
As communities, carers need your support. Little and big actions can make a difference from the hairdresser saying “I’ll give you a ring when your Mum needs picking up” to the offer to take Mum out for lunch (without me).
Listening without judging, giving advice or problem solving (I sometimes just need a rant) to quietening the noise around the table when offering Mum a choice for her pudding.
I am forever grateful to thoughtful shop assistants who offer Mum a chair whilst I bring to her items that she wants to choose from and dentists who joke about “most 90 year old women hand me their teeth when they come for their check up, but not you…open up!”
I value supermarket staff who don’t look out the corner of their eyes when they see an elderly woman pushing a laden shopping trolley because perhaps they understand that the most effective way to encourage Mum to get some exercise and stimulation is to return to the familiar pattern of the ‘weekly shop’.
My resilience is recharged by offers to walk the dogs (so that I can get on with other things), friends who just ‘drop in for a cuppa’ and spend all their time talking to Mum and patience in car parks when Mum gets out the car.
I am grateful to the postman who took the time to learn Mum’s name and knows to wait a while for her to answer the door because she feels useless if she can’t take in post or parcels when I am out.
Most of all I value unconditional understanding when I cancel dates at the last minute because I have an instinct that I would be better off staying at home with Mum that night.
What will you do?
All these things sound so obvious, but in Carers Week I guess my call to arms is to think again what understanding you can turn into an action?
Any action counts, big or small, but it can and does make a difference. As a carer, I’m not sure it is the health and social care institutions I am always looking for support from – it is the community around me as well, noticing and acting upon their awareness and understanding.
The philosophy of hospice and dementia care is very much based around communities, person-centred care, seeing the person within their social networks and noticing the detail.
I think hospices can be part of the momentum to help communities turn understanding into action in supporting carers.
This Carers Week, what will you do?
References
- Russell S. Why diversity matters in advance care planning. International Journal of Palliative Nursing. 2015; 21(5):234-235.
- Russell S. Do Definitions matter in palliative care? International Journal of Palliative Nursing. 2015; 21(4):160-161.
- Russell S. Advance Care Planning: Whose Agenda is it anyway? Palliative Medicine. 2014; 28(8):997-999.
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