Caring for a family member with dementia can feel like a lonely road, especially when this affects a couple who were previously intimate and in an equal relationship where sharing everything in life was the norm.
No one sets out to be a family carer. It is a role that gradually emerges as the dynamics in a relationship change.
I have often heard carers say that they do not identify as being a ‘carer’, especially early in the journey, when life can carry on almost as normal.
Speaking at a conference a few years ago, I remember Jayne Roberts – wife of Chris, who has young onset dementia – reflecting on the moment when Chris was diagnosed: “We went into the appointment as husband and wife and came out a while later as patient and carer, but we were not willing to accept that,” said Jayne, “we are husband and wife”.
Jayne and Chris have carried on living their lives on equal terms. “In some circumstances, he cares for me, in others, I care for him” says Jayne. They are making every moment matter and sharing their experiences of living with dementia, telling their very hopeful story.
However, as a person’s condition advances, relationships do change, and family carers can feel very alone. Caring is demanding and requires an understanding of the changes a person with dementia is experiencing. Dementia education is vital, including the opportunity to learn new skills. Professionals have a part to play and being connected with other family carers can help enormously.
With the number of people living with dementia in the UK now exceeding one million, there is a wealth of experience and knowledge amongst the carer population to tap into. At Lifted, we are keen to facilitate connection between family carers. Our facebook support group reaches out to more than 8,000 people, all of whom have stories to tell and expertise to share.
Loneliness amongst family carers is more common. “When you’re caring for someone, loneliness can often creep up on you and your relationship inevitably changes”.
One key reason is the lack of opportunity to take part in social activities, caused by factors such as:
Families often find that finances are tight. Carers may have to give up work to take on full time caring responsibilities and the benefits system does not recognise the enormity of this commitment. Carers Allowance – a means tested benefit that is payable only to those who are of working age – is not a replacement for a lost salary.
Loss of social contacts
It’s a common experience following a diagnosis of dementia, that friends fall away. This compounds the feelings of loss for family carers. Even if there is an opportunity to go out, many carers still don’t feel able to talk about their experiences, perhaps fearing that friends will not understand or simply not know what to say.
* 36% of caregivers feel uncomfortable talking to friends about caring
* 57% have lost touch with family and friends as a result of caring
What you can do
Think about yourself: Many carers cope with the demands of the job by putting their own needs to one side. Whilst this might sometimes be necessary, if you do it too often it can become a habit that’s quite difficult to break.
Reach out: Try to find a few minutes each day to make contact with the rest of the world, whether that’s speaking to a friend in person, on the phone or even chatting on social media, it could help you feel more connected and less isolated.
Find peer support: Share how you feel with another carer. You might be surprised to find they are experiencing something very similar and that you are not alone after all.
Follow this link to join our Lifted Dementia Support Group
Sign up to our weekly virtual coffee morning for family carers, which takes place every Friday on zoom between 10.30am and 11.30am, facilitated by our Dementia Adviser, Barbara Stephens – Eventbrite link