“Letting the snowstorm settle” - Thoughts on coping with stress as an informal carer

To mark National Dementia Carers’ Day, one of our Carers Connected participants,
​Pam, has shared this personal, practical perspective on how informal carers can cope with the demands of caring for a loved one. Pam cared for her husband, Barry, who had dementia. Barry passed away at Easter. ​

Pam writes:

One Thursday afternoon recently I had problems getting into our Carers Connected zoom meeting, and eventually I had to switch off my computer, wait a short while and then switch on and try again.  It reminded me of when I was a woman returner at work in the late 1990s and Rosemary, in IT support, was so good with those of us who were new to computers and got frustrated when they wouldn’t cooperate.  She’d say, “Switch off.  Let the snowstorm settle, in the screen and in you. Then switch on again.”  Invariably all would be well.

Anyone can get stressed with all sorts of things in life but for carers there can be particular additional stresses, for example the challenging behaviour of your loved one, or the feeling that you’re constantly fighting the health care system. It's then, for our own wellbeing, that we need to have strategies to switch off from the situation, let the storm inside us settle, and then reconnect.

Pam's comfort box

​What might switching-off mean?

• physically removing oneself, by stepping out into the garden or another room for a few minutes.
• spending time with your comfort box* of sensory items.
• you might have a particular piece of go-to music or a Bible verse that helps calm you.
• if necessary, pound a pillow or cushion, or do some vigorous exercises to let off steam.
• you may only have time to do some deep breathing – inhaling something like ‘I’m doing ok’ and exhaling ‘I’m letting go of the tension’.

Hopefully, you’ll then feel in a better position to reconnect with your caring.

I heard a lovely song recently on the Radio 4 Daily Service, which contrasted an eagle effortlessly soaring high on thermals, with a sparrow flapping wildly but not getting very high.  What helps you to rise above the storm?  As well as the practical suggestions above, as a Christian I’ve been so grateful to know that there is a loving heavenly Father who cares and, if I let Him, is more than willing to lift me on eagle’s wings. 

I’m no expert, and my experience is limited, but now my caring role is over, and I have time to reflect, what else have I learnt about coping with stress in caring?

• Recognise it’s the illness, not the person, who is behaving in a challenging way.  Perhaps I was fortunate that my husband’s behaviour and verbal ability changed so rapidly and dramatically, that it was very quickly obvious that he was ill and no longer the real man I’d married.  Maybe it’s harder to recognise the role of the illness if the decline is more gradual, with challenging behaviour interspersed with normal behaviour.
• Be gentle on yourself. Caring for a loved one is a new and unknown path that affects everyone, and every relationship, differently.  Yes, there’s some information and advice available, but ultimately you are negotiating a path unique to you both.  So go easy on yourself if you feel you’ve messed up one day.
• Celebrate your achievements. Before you go to sleep, review the day and acknowledge the good things in it.  Feel free to congratulate yourself when you’ve coped with a particularly stressful situation.
• Recognise you're experiencing a form of bereavement. Each decline in your loved one’s condition requires adjustment – a letting go of what has been and a loss of what might have been.  I don’t think I’d realised at the time how mentally and emotionally demanding that can be on the carer.​

As I said, I'm not an expert - I'm just one of many people who has negotiated their own unique path as a carer. But maybe there’ll be something in these ramblings that encourages someone who is currently feeling their way along their own unique path of caring.  God Bless you all.
 
*A comfort box of sensory items is a box of things which evoke positive feelings. For example a favourite photo, a cute drawing by one of your grandchildren, very soft material, a tub of bubbles to blow and watch, hand cream, scented candle, and a piece of bubblewrap, because who doesn’t like popping the bubbles! I kept my box on view, because sometimes, even just remembering its contents, was enough to help me relax a bit. 

If you are an informal carer, please see the For Carers section of our website for details on how you can become part of our Carers Connected support group, as well as resources and reflections by carers that you might find useful. We also have resources for churches on supporting carers. 

You can also find resources on dementia here, including our new series of Making Moments booklets with practical ideas for enjoying quality time with a loved one with dementia.