I recently missed a Twitter chat on a topic that I was keen to get involved in so I volunteered to do a write up of the conversation, giving me a chance to add my views, and see what other people had suggested.
The topic in question was: tips to support dementia caregivers – something that I have tried to convey in various posts on my blog, but that I have as yet found hard to condense into manageable information. So here it is 🙂
As a caregiver it can be easy to forget about yourself, what with all the focus on your loved one or caree. But as has been mentioned a million times over, if you don’t look after yourself you won’t be a good caregiver anymore. So how can we support ourselves and each other to cope with caring for a person with dementia?
Preparation is key – before you become a caregiver, or at least early on in the process try to learn as much as you can, through medical professionals and support groups etc. Try to find out what can be involved, the bits people struggle with and think about how to deal with them. With dementia this can be especially tricky as everybody is attacked by the varying forms in their own individual ways. But at least if you have an idea about it, and a contingency plan for most outcomes you’ll find yourself stressing a lot less. There are now several courses available run by healthcare specialists and care companies that can be useful to learn more about dementia and its impacts.
Trust your own instincts – you know yourself better than anyone else, if something feels wrong it’s time to figure out why, and how to stop it. You will also know your caree better than most so don’t be afraid to share your opinion with people trying to help.
Learn to balance – a good balance is key to a person living with dementia, of course they want to, and should, retain their independence but as a caregiver you need to be able to judge when this could be detrimental to their own or anyone else’s wellbeing.
We can support people who are caregivers by being present around them, meaning we need to give them a chance to talk, to vent, without being judged or criticised. Sometimes we don’t even want solutions we just want someone to listen, a shoulder to cry on, or a hug, or someone to reassure us that we are doing our best, and that it is enough.
We all need to find ways to handle stress, it is bound to occur at some point and finding a way to release it will make for a much more comfortable life. For some keeping a journal helps, which was why I started this blog, but find your own way to release those pent up frustrations. Journals or blogs can be useful as it helps to write away the negativity and be able to start every day on a fresh page.
On that note, taking each day as it comes, not thinking that everyday is going to be the worst. A bad day is upsetting but they happen and they don’t have to influence the rest of the week. By learning to wipe that slate clean at the end of every day we lose a lot of unnecessary resentment and stress.
Ensure you are getting medical check ups and have people looking out for your own well being. Self care is so important, you won’t be able to care for anyone if you run yourself down to the ground. This also mean monitoring yourself or a loved one who is a caregiver for signs of burnout, which can include anger, anxiety, irritability, depression, fatigue. I showed so many of these signs before recognising them and by knowing what to look out for I could have prevented a lot of stress for me and for nan.
Sometimes, we just need a break. Many of us are caring 24/7 and everything down to our sleep patterns is dictated by the dementia. By volunteering to keep our caree company for anything as small as a couple of hours can give us an opportunity to unwind and think about ourselves.
Caregivers are not only a huge support for those living with dementia, but can also be a source of strength and encouragement. We need to keep ourselves on top form in order to help them overcome the challenges ahead.
We need more focus on the people, rather than their diagnosis or part in a carees life. Many times with Nanny Jean I wasn’t treated like a person, people forgot I had my own life and own interests aside from caring. By asking about the person and their life you help them escape for a little while. We find it hard enough to focus on caring all the time, it’s nice to be allowed to think of other things.
Most importantly, remember, there is no such thing as a perfect Carer. Everybody struggles, everybody has days they want to give up. Don’t be hard on yourself, do what you can and talk about how you’re feeling. There are plenty of support groups online and in the real world with people in the same situation; just doing the best they can for a person they love.