Spending the rest of your life with the person you love is a wonderful adventure. However, when a spouse becomes disabled it can put a strain on the partnership. Lorne Gillies investigates how to keep your relationship alive in the face of disability.
Whether it’s newly acquired or a long-standing condition that existed before you met, disability shouldn’t be the defining factor of a relationship.
Norman Phillips has cared for his wife, Ros, for the majority of their relationship. After she was diagnosed with multiple sclerosis (MS) their relationship dynamic didn’t change until Ros’ condition began to deteriorate ten years ago. It was then that Norman became his wife’s full-time carer.
“Husband and wife becomes nurse and patient, carer and patient. I don’t think you ever learn to adapt,” he says. “It exposes all the weaknesses in both your characters and all the weaknesses in your relationship because you’ve got one person who needs all the caring and you become the person doing the caring.”
Going through life together is a roller-coaster and there are highs and lows in any relationship. However, going from partners to carer and cared for puts strain on the relationship and it’s worryingly easy to forget why you originally got together.
Through the caring process, Norman and Ros have attended counselling to grasp onto the relationship they once had. This is not uncommon as counsellor Rachel Davies explains: “The person who is being cared for can sometimes feel quite guilty because they can see the impact that their illness has on their partner. On the other side, the partner who is doing the caring can sometimes do it in good faith, but sometimes there can be some resentment as well – an idea of this isn’t what I signed up for.”
Norman adds: “Counselling got us out of the blame game, to an extent. It stopped us being self-destructive because that is what was happening. We were taking the anger out on each other verbally and that’s not a good place to be and you feel rubbish after because you’ve had a bad row.”
Unfortunately, Ros has become increasingly dependent on Norman as her condition progresses. No longer able to bathe herself or go to the toilet independently, it fell on Norman to assist Ros. Caring for someone full-time can test any relationship, no matter how much love is involved.
“Relationships that are flexible and are able to adapt are the ones that can go the distance. Disability or illness is going to change things, but that doesn’t mean the end of your relationship. It’s about how you can make your relationship flexible enough to adapt,” says Rachel.
As Ros deteriorates Norman has seen an effect on her mental health, too. “She keeps talking about wanting to go home and by that she means dying. I find that very difficult because my brother committed suicide so having a relationship with someone who wants to die is hard. It feels like rejection,” he explains. Watching the person you love become a shadow of themselves due to an incurable condition or disability is heartbreaking – knowing that person would be happy to pass away is devastating.
It’s not just Ros that is affected by her disability: Norman’s health has also been affected from his caring duties. Suffering from fatigue, depression and overeating, Norman has also been involved in two serious accidents in the last six years highlighting the pressure that many carers are under. Even so, one aspect of ensuring the caring does not become overwhelming is to remember that you are a team.
“You’ve got to try and keep the relationship husband and wife. I mean that in a sense that you’re partners,” says Norman. “Even if one partner is carrying more of the load, you’ve got to try and maintain that sense of partnership rather than service user and service supplier, as therein lies resentment because you’re not getting paid for it. Talk through it, really talk, if you think you’re going down that route.”
Rachel agrees: “It is good to talk about your situation but don’t make it the most defining thing in the relationship.” Finding a sense of escape, even for several hours a week, can allow carers to regain their own identity. Many carers may worry about losing a sense of self due to caring responsibilities, and self-care should be a priority for everyone, regardless of care duties.
Norman gets support and respite by volunteering in a museum once a month, alongside raising awareness for charities. Volunteering has allowed Norman to find some time to spend where he doesn’t need to be constantly thinking about care and can have some fun.
“The partner that is going to be the carer really does need to develop something outside care,” he says. “I volunteer at the museum. You’ve got to keep a life going. I can be me. I can have a laugh and a joke. I don’t have to think about incontinence pads or carers not coming when they should. It gives a sense of purpose and when you’ve done a job well done; you feel good,” concludes Norman.
Caring can be difficult at times, even more so when there is the threat of losing your partner. Utilising counselling services to help you realise that you and your partner are a team can help to keep the relationship alive.
CARERS WEEK 2018
There are an estimated 6.5 million carers in the UK. During the week of 11 – 17 June 2018, Carers Week celebrates the hard work that carers do to support their loved ones. Many carers often put their own wellbeing to one side resulting in their physical and mental health being impacted.
This year’s Carers Week is shining a spotlight on the health of carers with the theme: Healthy and Connected. You can get more information on staying well by visiting the Carers Week website on www.carersweek.org, or download advice guides on balancing relationships with caring via the Carers UK website on www.carersuk.org.
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