Loving the unpaid carers of someone living with dementia.
The Southampton-based charity Caraway has a team of Dementia Chaplains/Anna Chaplains. In the first of a series of blogs for us, trustee and training lead of Caraway, Dr Ros Simpson, reflects on the carers of people living with dementia:
'Dementia is very common and will become more common. In the over 65s, 1 in 14 will have dementia; over 80 years, 1 in 6 people and, over 90, 1 in 3 people will have dementia. They make up 70% of care home residents and 1 in 2 of us will be affected by dementia as a carer or by having dementia ourselves. https://dementiastatistics.org/about-dementia/prevalence-and-incidence/
Remember Star Trek on TV 30 years ago? “Is this the end of life as we know it?” asks Captain Kirk of the Starship Enterprise. This can be how a person with dementia and their family can feel on receiving a diagnosis of dementia. I felt shocked, I couldn’t believe it and I felt depressed as I knew it was coming, said one carer. Another said I felt so confused, sad, angry, guilty and so low. I doubted I could rise to the challenge. This is going to be hard. Can these carers Boldly go where no man has gone before? There will be no Beam me up Scotty to stop the rollercoaster that is caring for someone with a dementia.
Hearing the story from a carer is the start of a supportive role for a chaplain.
Caring for someone who has dementia can be stressful because life is uncertain and unpredictable, it may feel out of control and is more personally demanding than anything that has gone before. Life may include actions and words that seem to go against the carer’s values.
Here are some top tips that I think help us to know how to love the carers:
· Just being there with a carer is a wonderful gift, never underestimate the value of your presence.
· Hearing about the past stories of the carer and the person with dementia helps us put their behaviours and family situations into context; such as past occupations, past traumas, family relationship difficulties, hobbies and achievements.
· Listening for words and phrases from the carer that suggest they are not seeing the problem from the point of view of the person with dementia, such as ‘stubborn’, ‘won’t’, ‘just sits all day’, ‘always criticising me’. A (metaphorical) change of footwear is necessary here, to step into the shoes of the person with dementia.
· You have, but don’t have to BE your emotions. Each time we meet a carer, listen carefully to an event that has happened recently that caused them anxiety. They may describe feeling guilty, angry or depressed. Let them know that identifying their emotions and deciding not to be them helps. It’s OK to feel them, it’s normal.
· Encourage carers to make one small change for the better out of a situation that was tough. They may call for help, tell their family, take a break … doing something different is a salve for 'stuckness'.
· Urge carers to develop much more support, put pride away and ask, ask, ask. Help rarely comes easily from medical and social services.
Lastly, the biggest challenge for all of us as we get older and for our carers is that life is not just about us anymore! A new relationship is needed based on love, respect, planning, cooperating, dignity and compassion.
Paul in 1 Corinthians 13:12 says: “Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity.” Pray this for your carers.'
'To look after her husband with dementia, for example, requires that the carer put away her personal needs, put on a new face, look at life through his eyes, see that a new love relationship is needed. To love each other in a different way - to touch frequently, to stroke, be close, hold, represent and give so much more of yourself than you ever have before.'
In Isaiah 43:13-19 God says: “I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland”. This is an encouragement to the carer, God knows and He is helping you do a new thing, trust Him.
That is why it is so hard to be a carer and why it is so hard to find time for yourself as a carer unless you are helped.'
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