Can you be a happy carer?

Can you be caring for a loved one with dementia and still find time to lead a fulfilling and rewarding life of your own? It can be very difficult to achieve a healthy life balance when caring for someone, as very often, your own needs and interests take a back seat while you do all you can to ensure the person is safe and looked after. A report by Alzheimer’s Society found that 80 per cent of carers find it difficult to talk about the emotional impact of caring for a loved one, while 40 per cent of carers provide round-the-clock care. In the same report, many carers admitted to feeling stressed at least several times a week. So how do you maintain a happy, healthy life while trying to cope with the demands of being a carer?

When I cared for my late mother, I did my best to make sure I found time for my own hobbies. It wasn’t always easy. Exercise has always been my passion and I found it very helpful for alleviating stress and allowing me to cope mentally with my role as a carer. I managed to train for and complete several races (including a marathon where I raised funds for Alzheimer’s Society), but also had to pull out of several events at the last minute when mum needed me unexpectedly. At the time, I felt disappointed, but looking back, it was the right thing to do and it was right that mum’s health should always come first.
Relationship strain
The hardest part of being a carer was the strain it placed on relationships. My husband was tremendously supportive and often visited my mum when I was unable to see her due to work commitments. We worked together as a team and it made our relationship stronger. We had strategies for coping that made the situation tolerable while supporting mum’s needs.

However, some friends were less supportive. Many encouraged me to ‘put myself first’ and go out drinking. ‘A few wines will make you feel better’, was a phrase I heard several times. I knew that those who weren’t experiencing the challenges of being a carer didn’t understand what it was really like. It’s not a role you choose. It chooses you. You can’t just walk away when someone needs you. Especially not a parent.

Did I find a good life balance and a way to be happy? The short answer is yes, once I realised what mum needed and felt sure that her needs were being met. Then I was able to take some time out now and then and relax. And that made me a better carer. Here’s what I learned and what worked for me:

Don’t take nasty comments personally

A person with dementia may be prone to mood swings and as the disease progresses, they may lose the ability to edit their behaviour. They may say or do things that can seem inappropriate and hurtful at times. It’s difficult to accept this, especially when you’re doing your best to care for the person. Understanding that the disease itself is causing this, not the person, is the best way to cope. Once you accept that dementia is probably causing these nasty remarks, you will be less likely to take them personally and therefore less likely to be upset.

Remember you can’t change their behaviour

Change yours. I found that my mum lacked empathy. If I went to see her after work and I was tired or feeling unwell, she wasn’t sympathetic. Once you understand that it’s not always possible to reason with a person with dementia, it makes the situation more tolerable. Change how you behave. Don’t look to the person for empathy. They may be feeling confused or scared. Aim to reassure them and be there for them. Rely on others for emotional support.

Don’t try and do it all on your own

This means relying on trusted friends and family members from time to time. Ask them to drop in and visit the person, pick up shopping, help with chores or keep an eye on them. I used to ask my best friend to pop in and see mum when I was away on business. Another friend would call mum daily for a friendly chat. Knowing they had mum’s best interests in mind and were there to help made a real difference.

Plan social events that you can both enjoy

Take the person to the park, out for lunch, to a local village fayre, a garden centre, anything that you can both enjoy together. Don’t talk about dementia, focus on the day itself and on both having a good time. Be friends, socialise together – don’t make every task simply about providing care.

Get organised

Seriously, plan in when you are going to visit the person and how that time will impact on other things you have going on in life. Make sure you are getting support, so if someone else at home needs to do certain chores while you’re caring for the person then make sure they know exactly what is expected of them.

Talk to your boss

Alert your employer to your caring role and ask for flexible working, which you are entitled to request as a carer (even if you only care for someone for a few hours a week). This may include sudden time off in an emergency or the opportunity to work remotely from time to time.

Don’t let situations escalate

If the person with dementia is getting agitated, change the subject. Failing that, leave the room if it’s safe for them to be alone. Don’t get drawn in to heated debates that will escalate. I once got into a nasty argument with my mum over her criticism of me and ten minutes later she’d forgotten the entire conversation. I realised if she had forgotten the argument it wasn’t worth all the upset on my side. Let it go.

Join a local support group or find an Admiral Nurse

It’s important to talk to others in the same situation as you, so that you can share experiences and talk to those who are going through the same thing. This will make you feel less isolated and better placed to cope. See if you can find an Admiral Nurse in your area, who are specially trained to support families of those with dementia. Ask your GP for details of local services or support groups.

Set your own goals or plan events

Make sure you have something to look forward to or achieve. In my case, it would be training for a half marathon, or it could be booking a holiday and arranging respite care while you take a much-deserved break. Try not to put your entire life on hold.