Being and Becoming a Carer
dementia changes selves
Dementia care is different
We need to change everything:
our daily routines
our ways of thinking about life in general - planning tends to go out the window . . .
about the day ahead, about what we want to do
It’s a roller coaster ride! Sometimes fantastic and funny, sometimes scary, always demanding – but never dull! Never without its challenges. Most dementia carers end up with loads of funny stories! Do share them so that we can laugh along with you.
But most of all, we have to change our ‘selves’ – and that’s the hard part. We hope the ideas and stories here will help you to think about what that means for you, or how you can help someone who is finding these changes difficult.
What most carers get told:
Dementia care is a challenge, it will be difficult, so many carers suffer from stress and depression, they have what’s called ‘the carer burden’. You will need ‘respite’, you will need time for yourself, and so on. Mostly doom and gloom.
About the only good thing is that you will get called such nice things by people who give you no help! They will tell you that you are wonderful, caring, so supportive – when all you really want is for them to make you a cuppa or go shopping for you!
Yes, it is tough a lot of the time, but starting with the negatives makes it a whole lot worse. So let’s see if we can’t lighten the load, share it, even shed it from time to time.
dementia changes life
Caring in the context of dementia is not just about taking on new roles – it is, literally, life changing, especially as dementia advances.
Carers and family will find themselves in a relationship with someone they know well who is changing as their dementia advances.
That person can’t control the way she or she is changing – which means we have to do the adjusting. Carers may find they need to become a different kind of ‘self’ – take on new roles, let go of former ones, and adjust to having to live a different lifestyle.
We have to learn new ways of ‘being in relationship’ with another person
– maybe a person we have known all our lives but who is changing in ways that can be hard to understand and hard to accept. This does not have to be a bad thing, but it’s not easy either. Learning from the experiences of other carers – through ideas, articles and stories – can certainly help to prepare, empower and equip us for the changes ahead.
The person with dementia can’t do anything about the changes that are happening to them – but we can change and that will make their lives so much better – and ours if we are able to do the changing ourselves.
‘I think the two most difficult times in a caregivers life are at the pre-beginning, when symptoms are not clear and a diagnosis is difficult to obtain, and at the end, when caregiving is over and the caregiver is left wondering what to do with themselves now that they are no longer a caregiver’.
resources to help in thinking about care in the context of dementia
Relationships and carers change
This is a resource that we have found quite helpful for exploring how relationships and selves change in carers. The resource refers to all carers as partners in care.
Engaging with someone at the stage they are at - even if it feels juvenile or silly.
This is really amazing - listen out for 'respecting [and honouring] the obsession'
Teepa Snow is a remarkable woman who has developed the Positive Approach to Care – check out her site. It has lots of ideas, access to webinars and online courses for carers.
And check out some of the wonderfully informative, inspiring and well-produced set of videos by Teepa Snow. She ‘gets it’! And she has a great way of explaining what we need to learn – and unlearn – as carers of people with dementia.
There are others but this one is special: ‘How Dementia Affects Language Skills’
And there are videos to purchase online- they cover so many aspects of dementia, communication in dementia, LGBT issues, male carers – check out the extensive list.
understanding the changing relationship
Teepa Snow on Changing Relationships
Teepa looks at the frustration and grief that can be felt when a relationship changes - as a person with dementia begins to change. She says that maybe we can 'try to let go of trying to fix, and be willing to try something new'. She suggests looking for ways where the relationship was enjoyable beofre without having to talk and starting there. This goes for 10 minutes and is not a hard listen.
caring for a partner
‘My way of coping is to treat my husband as I knew him. Don’t let dementia rule your life. It’s hard and yes there are days I want to run away. I have respite as I have to look after myself. We still have our memories, photos and most importantly, we still have each other.’
Look to the positive
Hold on to all those things you get right! You will be doing so much so well – so don’t focus on the problems - no one can do everything!
Look for new ways to do things
Don’t be afraid to imagine new ways to do things you have always done ‘one way’! You are living with change – so be courageous about changing how you think about things, how you do things. Surprise yourself!
Keep at it
Other people often seem to have the answers (and are fond of giving us advice). But read our carer stories – these are stories of people who found some things easy, some things tough and other things impossible – but they are all different. Do what you can do – and don’t try and do it on your own. The old African saying, It takes a village to raise a child’ applies here too: It takes a village to help a person with dementia (all of us really) to a comfortable life’s end. You are not a village – so reach out to others.
There is no ‘right way’
There is no ‘right way’ (see Meg’s Story) – there is just doing what we can, day by day. Don’t worry about all that ‘advice’.
Coping with changes in your intimate relationship
A letter to a husband – he has changed but he hasn’t...
By Us for Us Guide - For Partners
This website was created by a woman who was the caregiver to her husband. Her blog has some helpful insights and descriptions of and musings about her experience.
caring for a parent
From Dementia Australia
This story touches on the relationship of a daughter and mother that had been strained before a dementia diagnosis.
This webpage may provide some ideas and ways to think about caring for a parent with your siblings. It recognizes the challenges that may arise.