We all have different responses when a loved one has dementia. “My wonderful supportive brother can’t bring himself to hold our mum’s hand. I can’t not hold her hand,” said a friend of mine whose mother has dementia.
Some of us feel the distress and confusion; the vulnerability and the fear. If that’s you, the chances are you are totally immersed in trying to make things better for your parent or partner. As you take on the role of defender, advocate and carer you become so wrapped up, you may overlook your own needs. To some extent this happened to me. As is frequently said, dementia doesn’t happen to one person, it happens to families.
I hear about carers who have given up everything to care for family members. It probably didn’t happen overnight. Gradually people cut out those activities that feel like an unnecessary indulgence. They stop attending classes that they love, going to the gym or meeting friends. Then perhaps they reduce work hours too. As more effort and energy is required, they may leave or lose their job. Caring for a loved one may feel more important than any job they’ve ever done. I lost my enthusiasm for the international development and social justice world, that has motivated me most my life.
A life on hold
“One’s own life often gets put on hold,” tweets Caroline who cares for her mother full-time in Canada. “A bend over backwards caregiving takes hold for whatever reasons. The caregiver disappears into a fusion of the life of the cared for, with their own needs subservient. It’s an odd / unhealthy phenomenon, but so very common.”
Alan is one of 280,000 people in the UK who cares for someone living with dementia full-time. He lives in London and faces ‘dementia poverty’. He is unable to work as his mother needs 24-hour care, and he can’t face the prospect of putting her in a care home.
Three tweets from Alan over 24 hours this week give an insight into the challenges facing him.
“In truth on many occasions I have begged to be released from this dual suffering. I have gone to bed crying in hope of not waking up to face the onslaught of my poor mother’s suffering. Let it all rest on other family members’ shoulders. But of course, I wake up and get on with it.”
Such stresses have resulted in tragedies. Unwilling to put his wife in a care home against her wishes and no longer able to cope, Lawrence Franks from Stockport, killed his elderly wife.
Carers like Alan and Lawrence save the UK government £11.6 billion a year, yet in most cases no support is offered to them unless they scream and shout for it. The provision in some places is better than others. Wales is better than England.
For some reason we wait for a crisis before we ask for help. Don’t let this happen to you. Based on my experience, I urge all family carers to do three things:
1. Get help and support as soon as possible: It is available
If you care for someone diagnosed with dementia, whether or not you with live with them, seek support early. I got very ill before I even started caring for mum at her home.
Admiral Nurses can provide advice and wise counsel on how to support your loved one, if you are lucky enough to have one in your area. Wherever you are in the UK you can always phone their helpline, which I’ve found very helpful.
Find out what support is available for you. Look at the Carers’ Guide for your country. This has lots of valuable advice, including information about carer’s assessments, benefits, workplace rights and how to find other help.
2. Take regular time off from caring
Now I’m caring for mum at her home, I get regular breaks. We all need breaks. Imagine if this was a job (albeit unpaid). You wouldn’t expect to work 12 to 24 hours without a break, would you?
If you are the main carer you are entitled to a carer’s assessment and support from social services. My mother’s needs and mine were assessed, and as a result we are getting lots of support. Find out more about getting an assessment.
Before speaking to my social worker, I phoned the local carers’ organisation to explain my situation and find out what I was entitled to. Bridgend Carers have a dementia specialist, so I spoke to him. It helped me clarify my case to the social worker. Find your local carers’ organisation.
Don’t be afraid to ask family for help. My sister takes mum out for a big chunk of the day, most Sundays. On a day I don’t get other help, this makes a huge difference.
3. Strengthen your resilience
This is the most important thing you must do. Caring for someone’s emotional, as well as practical needs, can be especially tough. You need a strategy in place that supports and strengthens your resilience so you can deal with this.
I attended a hugely valuable, three-day Dementia Carers Count course which includes strategies for strengthening resilience. See the latest course dates here. Not only do you learn lots about caring for your loved one and yourself, you meet other people in a similar situation.
I meditate most mornings before mum gets up. I do yoga (following classes online) in snatched moments when mum is napping or watching TV. I organise a carer to sit with mum two evenings a week so I can keep up my badminton. This also provides much needed social contact. Recently, I attended a course while mum was at the day centre, to help me cope better with my own emotions.
These things work for me. Work out what’s most important to your wellbeing, and make it part of your routine. Make this your number one priority and work at it, however hard it seems.