THE ‘NOT SO GOOD’ TIMES
That feeling of being in a cage – and how to step out of it: insight and encouragement
This webpage explores and validates all those emotions a carer may feel from time to time
‘I don’t know if everything we did was right … I guess I question myself on some of the decisions we made’
WANTING TO TEAR YOUR HAIR OUT
Gaynor, caring for her husband, Charlie, with Alzheimer’s:
I didn’t ever think about this strange expression, ‘tearing one’s hair out’, except I knew it meant being frustrated. But there I was one day, literally wanting to scream so loud, wanting to grab my hair with all my fingers clenched tight, and pull it until it hurt.
I thought, ‘Oh! That’s what that expression means!’ It is such an intense feeling of being so ‘over it’, so frustrated, so exhausted, that that is what you want to do – tear your hair out. Thinking about this, I started laughing at myself! But it wasn’t to be the only time I felt like that – but on other times, I tried to remember to laugh at myself again.
Caring can be lonely, frustrating, tiring, exhausting – it is OK to get angry – we just need strategies for moving beyond it and not letting anger take over.
'Accept that you will get angry – at life, at the person with dementia, at the professionals who care for them – and that we all have our limits. It’s not always easy to stop yourself lashing out, but if you think you might, take yourself off (even if it’s just to the bathroom or a cupboard) and give yourself five minutes to do a silent scream. Yelling into a pillow can help…'
John, cares for his wife, Anne, who has vascular dementia
From LiveBetterWith Dementia
Depression is often experienced by caregivers of loved ones with dementia. And it is not surprising, as some carers find it difficult to get meaningful support of any kind.
But if you feel you might be getting depressed – SAY SOMETHING! Tell your doctor or a friend or relative so you can get the support you need. It is very hard to cope – and getting help is the best way you can look after yourself.
It is important to know that if you are experiencing any of the symptoms of depression, you’re not alone and don’t have to pretend you are ‘coping’ when you may not be. There will be support groups that can help – reach out to them.
Contact Dementia Australia if you are not sure where to start looking – they have lists of groups in each Australian State/Territory. https://www.dementia.org.au/support/in-your-region
This website provides good links for online caregiver support groups:
This website explains some of the symptoms of depression. Please contact your doctor immediately if you believe you’re struggling from depression:
As a loved one’s dementia progresses, family tensions can intensify in regards to many decisions such as caregiving, financials and medical directives. These webpages provide several tips for families to navigate the hard decisions:
grief and grieving
As many would have told you, grief is normal - however it is easy ot feel guilty or about it or push the emotion down at a loss as to waht to do with it. Grief can be expereinced at someone's diagnosis, as your life changes along the caring journey which may invoke feelings of loss and then of course as your loved one passes away.
We want to acknowlegde you and your experience, you are amazing and wonderful in how you care and love and persevere and push on. Allow yourself to feel these things rising up in you - honour yourself and your experience and what you give and have given.
Some stories and websites that may be helpful for you
caring for yourself
This fact sheet is a caregiver’s guide to managing the extra stress from ambiguous loss. To sum it up, think of managing the ambiguity as learning to walk in the fog. Keep moving forward, despite the stress of not knowing what lies ahead. But at the same time, reach out for support and human connections to stay resilient and strong.
And a caregivers ‘Bill of Rights’ from the same organisation – what a great idea!