Unseen and Unexpected: Caring at Home in Later Life

“I never really thought about being a carer”, says Jo, who first looked after her husband following a diagnosis of dementia when she was in her eighties. “He’s my husband so I thought we just have to get on with it.”

Age UK have estimated that 16% of those 65+ in the UK, approximately two million people, are unpaid carers, of which approximately 440,000 are 80+. The impact on older carers (65+) is significant: 70% have felt under strain, 62% have lost sleep due to worrying, and 61% have felt unhappy/depressed. (Note 1)

But typically, carers in later life don’t think of themselves as doing anything out of the ordinary. They are usually looking after their partner and the role creeps up gradually as they do more of the household jobs and personal care. The change may go unseen by friends and family but as the carer ventures out less and loses contact with friends and family members, he/she is likely to feel isolated and lonely as well as exhausted, overwhelmed and burdened by responsibility.

Carers Connected is an initiative of Embracing Age which offers online zoom groups for support and encouragement to carers across the country including prayer. It is particularly beneficial for those who struggle to get to church services or to a small group due to their caring commitment and its Christian ethos sets it apart from all other carers’ groups.

I have been privileged to speak with many older carers there about their specific fears and concerns:

Physical health – carers are known to neglect their own health not wanting to leave their loved one to attend appointments. Older carers are more likely to suffer from health problems making it more difficult to assist their partner with mobility, to push a wheelchair or to manage physical jobs around the house and garden.

Social isolation and loneliness – carers in later life may be limited in how far they can walk, they may have stopped driving or feel daunted using public transport. Many must arrange a paid carer or friend to ‘sit’ with the cared for person if they are to go out, creating another hurdle in maintaining contact with others. Sue, in her seventies, looks after her husband and has happy memories of the trips she used to make to London with friends to visit museums or Kew Gardens, “I can’t do that now” she says, “I can only be out of the house for an hour and a half at most.”

Changing roles – caring can put a huge strain on finances, particularly when the carer has had to stop working or when a carer in later life has to take on responsibility for the household finances having not done so previously. This can present a significant burden and considerable anxiety. Learning new skills presents a greater challenge in later life and yet many older carers have to adapt and learn as they do more and more within the home. As one carer said, “We used to share the workload but now it’s all on me. That wouldn’t be quite so bad if I didn’t feel so taken for granted. There is never any real appreciation now – growing old together wasn’t meant to be like this. I can’t remember the last hug or kiss I got.”

Changing relationship – older carers are often looking after a partner with dementia and communication can be a huge challenge, as Shan explains, “He’s oblivious to what’s going on around him. His speech has gone so I can’t understand him and nor can others.”  She reminds herself regularly that, “I am a wife first, a carer second.”  Dementia can change a person’s nature so they become violent or wander away from home, both of which can be extremely distressing for their carer, particularly if older, feeling vulnerable and unsafe.

Technology – IT can be a lifesaver for those stuck at home but many older carers lack confidence using technology. Instead, they are dependent on others to deal with admin and financial transactions which are required online. Thankfully Jo, now 86 yrs, is adept at using Facebook and enjoys attending her church service via livestream. She acknowledges how she benefited from a computer course for the Over 50’s which she attended years ago, “It was such a blessing, a real Godsend.”  Likewise Shan, 73 yrs, enjoys Face-timing her son every day and attending an online home group, “God is gracious. Thank goodness I have my internet!”

Carer’s grief – inevitably carers grieve for the loss of the future they had anticipated, often precious retirement plans. “We thought we’d buy a seaside home and spend more time away”, says Shan, whilst Sue and her husband liked walking holidays, “We would have carried on enjoying weekends in the Cotswolds.” But such freedom is a distant memory for carers who are grieving the relationship they once had, and the activities and passions they once enjoyed. Jo sums up her feelings, “To be brutally honest I feel resentful about being a carer. I’ve faced challenges all through my life but this is really hard.”

How you can help…

Older carers deserve to be acknowledged and valued with the provision of respite, practical/emotional support and recognition for their efforts.  Sadly, it is all too common to hear of disappointment that they feel forgotten by friends, they have little or no contact from church, and rarely any visitors. Shan comments that one lady helped at the start “but now she’s too busy with church stuff,” whilst Sue acknowledges that, “My husband needs to see people but he can’t as he can’t get out!”

Unfortunately the State of Caring 2023 survey conducted by Carers UK showed that very few carers of faith receive any support from their faith organisation or place of worship. So what can churches and individuals do?

Signposting carers to Carers Connected is a simple step to take, but there are many other ways that churches can reach out to carers, particularly those in later life, in their own congregation:

Seeing – acknowledge those who are providing ongoing emotional, spiritual and practical support to someone else, even if they do not call themselves a ‘carer’, or do not live with the person whom they are supporting, or are not a family member.

Listening – offering a listening ear can be invaluable, but timing is critical – carers are unlikely to speak frankly in front of the person they are caring for, and they may not wish to speak truthfully about the difficulties they face at a social occasion.

Praying – be specific about asking for prayer requests and demonstrate genuine interest about what their life is really like.

Enabling and Including – carers and the person they are caring for want assurance that they are still part of church family life.  Ensure that they receive relevant communications and are not overlooked or marginalised.  Enable them to serve with a safety net if appropriate, especially if serving had been part of their life within the church previously. Sue explains how her involvement at church has changed, “My life is too unpredictable now to help with children’s work as I used to but we can still pray together and attend an online bible study.”

Offering practical help – be specific rather than making vague offers of help, but do not make assumptions about what may be helpful.  Their context is very different to anyone else’s.  A good question to ask is, “What would help you most at the moment?”.  Consider creating a directory of help that can be offered such as lifts, ‘sitting’ with the cared for person, gardening, DIY, help with IT, emergency cover, meals etc. Sue has greatly appreciated being given a lift to a hospital appointment and a friend coming to be with her husband when she had to go to the dentist.

June is the month for both Carers’ Week and Loneliness Awareness Week so what better time to reach out to a carer you know who may be struggling at home or feeling lonely and isolated from church friends. Poignantly, Jo says that, “People understand to the best of their ability.” Could you increase your awareness and understanding of how carers are coping in your community and offer some help?

During our online gatherings at Carers Connected we support each other in our caring role, we encourage one another in our Christian faith, and we bring our concerns to God in prayer. The sessions are led by a small team of volunteer hosts and last for one hour.

For information about Carers Connected please head over to their page on the Embracing Age website at https://www.embracingage.org.uk/for-carers.html.

A special thank you to all the carers who gave their time and insight to this article.

Sarah Smith, Carers Connected Co-ordinator, Embracing Age

(Note 1) All stats come from Age UK analysis of Wave 12 of Understanding Society, collected 2020-22.