Carers support groups, can they help?
Adrienne Gruberg, Founder of US site The Caregiver Space, talks about how she cared for her late husband and mother-in-law and shares how support groups helped her cope.
When you read things in the news about how people have become full-time carers for their parents and partners you never think it’s going to happen to you. You think you’ll have the rest of your life with your relatives until suddenly your time with them is cut short.
I found myself caring for my husband Steve, whose lung cancer took his life after a six- year battle, and his 90-year-old mum who had moved in with us for two and a half years during her own chemotherapy for lymphoma.
After a year of caring for the two of them, I’d reached my breaking point.
I knew I needed support, but was unable to leave them alone to attend support group meetings away from home. I turned to the internet in search of somewhere I could share my feelings and feel a sense of belonging. I found a group of ten women who were online for an hour and a half once a week talking about the challenges they were facing, listening to others’ issues and offering advice as well as counsel.
The lessons I’ve learned
No one ever thinks about how to be a carer for an ageing parent or perhaps a partner until they’re faced with it.
• Talk to people who get it. Seeking out a group of people who shared and also sympathised with my situation meant that I could rely on them to help me learn how to be a better carer and what things I was missing that could make life easier.
• Take “me” time. The amount of time you devote to caring can seem infinite but carving out some time for yourself can make a real difference to coping with the daily challenges that caring poses.
• Try to learn more. We had definitive diagnoses for both my husband and my mother-in-law which helped when trying to understand their cancers and how best to support them. It can be less stressful the more you learn about what they’re facing but I understand this isn’t an option for everyone. If you’re the type of person who’ll only worry more the more you know it may be best not to start Googling and remember don’t believe everything you read!
• Task yourself with things to do, for you. When you’re caring for someone you can lose interest in things you once loved because you’re too tired or simply don’t have enough time to keep up with activities outside care duties. Make time for hobbies as well as socialising – it may be hard work and you may be exhausted but it’s uplifting to relax and have some fun if only for a brief moment.
• Take notes. I took small chunks out of my days to develop an online journal where I wrote down all my feelings. I had days where all I wrote was “Steve is being a royal pain right now and I don’t know how much more I can take.” The mere process of putting those words down on the page was such a relief! The page was the only place I could put my exasperation, exhaustion, fear, sorrow, anger and shame about all the things I was feeling— without judgment.
Why I created a support group
Eldercare is reaching crisis levels and will only get worse. It makes sense to believe that someone who has gone through what you’re presently experiencing will have valuable lessons to pass on.
It’s helpful to put faith in those who’re on the same path as you and those who’re talking from past experience. People like that can help you grow and support you through the most difficult of times.
When my husband Steve died, I knew I wanted to do whatever I could to make sure carers would have easy access to a space where it was safe to express themselves and ask questions.
As a “hard-wired caregiver,” I have made it my mission to care for carers.
Benefits of sharing experiences
• Putting yourself first. Focusing on your needs for once instead of your parent’s or partners can help to relieve stress that builds up when you have no one to talk to day-to-day.
• Finding like-minds. Joining a specific group of people who’re caring for a parent or perhaps someone with a specific condition or age can help you to gain new insight into your situation. They’ll really listen to your problems whilst trying to provide constructive solutions.
• Reconnecting with people. By talking to those who’re coping with similar care challenges as you, you begin to remove that sense of isolation. There are other people who’re going through the same things as you and they do understand what you’re dealing with.
• Sharing is caring. Reaching out to other carers can feel daunting but you can learn from those who’re further down the caring path and be reassured that they’re doing ok despite their many responsibilities. It’s good to hear valuable advice from people who’ve been there before.
• Improving our day-to-day life. Learning how to be an effective carer and communicating our problems, such as how to balance social, business and family lives and how to deal with ever-growing responsibilities accompanied by an ever-increasing stress level.
• Feeling supported. Whether you’re talking online or attending group meetings being a part of a carer “community” provides you with a non-threatening environment where you can ask for advice without feeling like you’re admitting defeat. You can’t do everything on your own.
Organisations that can help
When They Get Older is dedicated to supporting the children of parents who need growing help. Our contributors and followers have a wealth of experience and tips to share. If you’ve questions you’d like to ask us or our contributors, simply comment on a specific article, ask us a question on Facebook or Twitter, or email the office and we’ll do our best to find you an answer.
AgeUK is focused on the needs of the older person rather than the carer, but does have information on carers’ entitlements as well as their rights.
Carers UK is a comprehensive website and advice service dedicated to the needs of all carers . Much of its information is focused on the needs of full-time carers of people of all age groups with a wide range of challenges.
Carers Direct also offers advice and support for those who need help with their caring role.
The Caregiver Space is a US website focused on the needs and welfare of carers. It may not be the right place for your specific needs but it’s open to everyone 24/7 offering a connection with like-minded carers as well as experts in grief and trauma and specific health issues.
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