Taking on the responsibility of caring for our partner* can feel different to looking after a parent, child or another relative. It can shift the balance in our relationship, change our anticipated future plans and dreams, and bring a strange duality to our role, as we shift between partner and carer.
And remember, not all relationships were great, before a diagnosis arrived - which can make things harder still.
*(husband, wife, spouse, significant other, better half? Delete as appropriate 😉)
Young or old, many of us find ourselves caring for our partner. The impact and implications this has will vary depending on our age, life stage, our own health, their diagnosis (and impact) and many more factors. We’ve done our best to pull together a blog that helps us to explore the impact that caring for our partner may have - with tips for helping us to navigate the best we can.
Skip over the parts that don’t apply, and hopefully, there are some nuggets of empathy and ideas that land well.
Why is caring for a partner different?
Over time, giving our all to our partner who may be too unwell to reciprocate our efforts can weigh heavy on us, causing stress, anxiety and resentment.
On top of this, we may be dealing with a diagnosis, loss of income, changes in their personality, and anticipatory grief. We may now be taking on all the housework and family/household admin too, and we may have simply lost those 'fuzzy' intimate feelings for our partner. Plus, we may already have our hands full with young children, work, retirement or our own health issues. And we may simply not be able to “share the load” anymore.
Whether we met our partner after they were diagnosed or have had to come to terms with a change in their health and our plans for the future, wobbly moments are natural.
As our community proves, staying connected to your partner while caring for them can be both challenging but also possible. And when it isn’t, we can find ways to practice acceptance, feel gratitude for the past and find positives in our ‘new normal’. We’ve looked at some of the common challenges when caring for a partner and how carers in our community are overcoming them.
Whether we're 6 months in or 16 years down the line, we hope there is something helpful for all of us.
Common issues while caring in a relationship
1. Managing personal care
Managing incontinence, periods and bodily fluids when caring in a relationship is more common than we think. Although it’s nothing to be ashamed of, our partner may be easily embarrassed or resentful at needing help with tasks like changing pads and stoma bags. For us too, it can take time for us to adjust to the messy demands of personal care.
It’s not uncommon to use a touch of humour to help lighten the mood.
These are not easy topics to talk about, but when we’re communicating in an upbeat way, we’re reassuring our partner that we’re ‘cool’ with the situation.
Our guide bladder and bowel incontinence share top tips for navigating this potentially messy subject. Many of our carers say that being able to laugh at the ‘ups and downs’ of personal care helps to keep them connected to their partner.
“How do I still feel like his wife when I’m losing myself to the caring role? How do I care for myself when his needs are so much greater?”
2. Loss of sexual intimacy
Sex can be an important part of a close relationship. Many chronic illnesses cause problems with sexual function and disrupt how we connect with our partner.
On a physical level, health issues and medications may cause issues with vaginal dryness and erectile dysfunction. Our partner’s state of mind can affect their sexual interest too. In this case, health issues caused by illness may lead to a loss of libido or lower self-esteem.
As a partner who cares, our sexual desire can wax and wane too. We might be wondering how we switch from changing catheters to feeling sexy. We might be still coming to terms with things ourselves. Or we might just be plain exhausted from caring.
Whatever our scenario, communicating with our partner is important. By talking, we can work out the barriers to sexual intimacy and how we can overcome them. This could be scheduling time together when a partner may be less tired or talking about positions that may cause less pain.
In some cases, we may have little control over losing sexual connectedness through illness. This can be hard to come to terms with, but we can still enjoy intimacy with our partner. Cuddling, kissing and holding hands are some alternative ways to show and feel physical affection in the absence of sex.
“He loves me and knows how lucky he is in my totally looking after him but the partnership died with his illness. I miss the hugs, the caring remarks.”
Sometimes people feel they need to keep the intimacy going in a relationship because it's an expectation. TV and film would have us believe that an active sex life is an essential part of a relationship. Remember: it's absolutely fine to stop having sex with our partner at any time, for any reason. We are never obligated to have sex. We should give ourselves permission to say ‘it's OK’ if our wants and needs have changed.
Sex should always be consensual between both parties. If we’re experiencing unwanted or inappropriate sexual behaviour from our spouse, we should be firm and direct in communicating that we do not want to have sex. If our partner isn’t listening to our words, we can physically step away from the situation.
If we think we may be at risk of sexual assault, we can call the 24-hour freephone National Domestic Abuse Helpline, run by Refuge, on 0808 2000 247. Men can also be victims of domestic abuse and the Men's Advice Line (run by Respect) can help. Their number is 0808 8019 327. Sexual violence is a crime, no matter if it is committed in a relationship.
In some cases, a partner’s inappropriate sexual advances may be part of their condition, such as dementia. The Alzheimer’s Society has a phone line we can call for advice and support.
For some of us sex may be a distant memory now. This may have happened regardless of our caring role, and perhaps we'll never know. Maybe it was our choice, maybe not. Perhaps we've made peace with things, or perhaps we still long for intimacy. If this is the case, there are other ways that may help us to feel connected and intimate, if we choose to (more on that below).
3. Personality changes
Some physical and mental health conditions like dementia, borderline personality disorder, depression and psychosis can cause personality changes in our partner. In some cases, it can cause an increase in aggression and anger.
This can cause conflict and affect how we feel about our partner. We might need to change how we communicate with them. We might also become fearful of their behaviour.
If the person we care for has had a life-changing diagnosis, they will be going through their own grief and will be working through various emotions including denial and anger. It’s common for all of us to take things out on the person we’re closest to.
It can be helpful to keep in mind that what they say, maybe a projection of their fear and anger (or a symptom of their illness) - rather than personal to you. Although unkind and mean comments can still be very hurtful. Below are some ideas from other carers, that may help:
Tips for coping:
Gently let your partner know how you’re feeling. Not talking about our feelings can lead to hidden resentment and they may be unaware of how their actions are affecting us. We may find we don’t like the person we care for at times, and it’s important to know that this is normal and there are ways we can support ourselves.
Try to work out the cause of their mood changes. For instance, pain or struggling with everyday tasks may trigger frustration.
Try to be positive and reassuring. Avoid confrontational accusations and talk about your feelings in non-judgmental and non-blaming language.
If the person we care for is safe, we can step away and take five minutes for ourselves while they’re experiencing an extreme mood swing.
Speak to a friend about how it’s affecting us. If we feel we need more support, we can speak to a therapist.
Join our Mobilise Community. Our online community hub is a safe space to share our challenges, get support from other carers and have a therapeutic giggle.
“ I know it's the illness and not him but the words and actions still hurt.”
4. A change in roles
Changing roles can be an adjustment for both parties. We may never have been ‘the one who wears the trousers’ in the relationship, but suddenly find we’re calling all the shots. Some of us might have never set foot in the kitchen but have been tasked with taking on the cooking and cleaning.
Finding our feet in these new roles can be tricky at first, but we have the opportunity to reframe our thinking and see it as a new challenge. We might get a buzz from changing a flat tyre or cooking a roast dinner from scratch for the first time. We may even enjoy learning and improving some new skills. Of course - we might not feel positive about any of this, and that's common too. We might be simply too tired to think straight.
If we’re feeling brave, we can read about the benefits to be gained from stepping outside of our comfort zones (when we’re ready to).
Of course, switching roles can be difficult as our partner may have done things “their way” for many years. Our spouse might not feel that our domestic efforts meet their standards. Or they might complain that we’re not handling bills and admin correctly.
“My wife sees dirt I just don’t notice. I never feel like I’m on top of the house”
And as long as both partners are willing to stay open-minded, a change in roles doesn’t have to cause conflict. In fact, some people find it fulfilling. We may have taken a backseat out of habit, but find that we enjoy taking the lead. Our partner may enjoy being looked after too.
5. Loss of income and financial worries
Financial worry can have a big impact on our relationship. We might feel anxious about a loss of income if our partner is no longer well enough to work. We may also need to leave work or reduce our hours to focus on caring. This can lead to friction at home.
Our guide on “can we care and work” may be a helpful read, for those of us considering changing our working pattern right now.
Feeling empowered and in control of our financial situation is the first step to managing our worries. If our partner has a disability or a health condition that impacts their ability to work, they may be eligible for benefits. Carers are also entitled to financial help too. Check out our financial support checklist for carers, for more info on what’s available.
“I gave up my building maintenance business to care for my wife, so now I am always here for her. The financial side is appalling. Debt management helped me so much, but it’s still hanging over me. Our monthly finances are on the border line with all available benefits for our age group. I just try and smile through the cracks and get on with it.”
6. Loneliness
Depending on the relationship we had before and the diagnosis we’re dealing with, loneliness can definitely play a part. Some of us may feel like we’ve lost or are losing our best friend. While some of us may be so busy caring and coming to terms with things that we withdraw from our friends and family (or we feel they’re withdrawing from us).
Hanging out with the “right people” can really help - people who “get it”. Our guide to “finding safe peer support - or finding your tribe” is a helpful read, with tips on how to avoid unhelpful people too!
Many carers cite the benefits of befriending for helping with loneliness too. And of course, all carers are welcome to join our community. We’re here for you.
How our feelings can change while caring
It's totally normal to lose romantic feelings while caring. Just like any other relationship, our feelings can change over time and we may feel like those feelings are just not ‘there’.
We could try couples counselling in this case. Relate offers services for couples who are facing challenges. The charity has centres nationwide and also offers sex therapy as well as traditional counselling with a trained therapist. Each of these local hubs sets their own prices, so the best thing to do is to check their website to find your local centre and enquire. Relate is also a useful resource for blog posts and advice on specific relationship issues.
If the idea of therapy makes us nervous, then our guide to therapy may help to bust some myths.
But, we may feel we have done everything we can and that our relationship is no longer working. If this is the case, we’re free to make the decision to not be romantically involved with the person we care for. Being transparent and honest is important, as our feelings matter too.
“I miss my partnership so much with my husband. All he wants to do is sit and watch television all day. Our lounge is in the middle of our home. He has his chair extended out into the middle of the room. I feel so bad that I feel resentful while he lays there and I am dashing around all day looking after him and keeping the house and garden clean and tidy. I love him dearly but it is a strain”
7. Notice and accept
No relationship is perfect. Even the ‘couples goals’ celebrities and influencers we see on Instagram have their own challenges behind closed doors.
Rather than focussing on what’s wrong with our relationship, it can be useful to see and accept the situation for what it is.
In our ‘new normal’, there may be lots of things we still love about our partner. And our changing dynamic may have shown us new things about our partner to fall in love with all over again. It could be their sense of humour, their intelligence or the way they make us feel. It’s important we express the things we love about our relationship when we feel them. This can go a long way in reassuring a spouse who may feel like a burden.
And please don’t feel alone if you’re struggling to find the positives right now. Many carers can relate to this. If we’re feeling lonely then our friendly carer’s community is a safe place to find support.
8. Letting go of “what ifs”
Whether it’s having children together, travelling the world together or enjoying a restful retirement, there may be things we’d planned as a couple that are no longer possible. Or we may simply be grieving for a future where we’re together in full health.
It’s important we ‘feel’ all our feelings while we come to terms with what hasn’t panned out as we’d imagined. A carer’s grief touches many parts of our life, and it’s important we acknowledge what we’re experiencing.
Some carers find that journaling can be helpful for getting their thoughts down on the page. While we’re writing, we’re uncovering what we’re going through and looking at solutions to accept, let go and move forward.
“I'm in my mid-seventies and the chores are so much harder now. 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. And who knows how much worse it will get?”
Top tips for making things feel good again
If we feel we can work on improving our relationship, there are steps we can take to connect with our partner:
Date your partner again - Schedule a date night where you do something special just the two of you. Whether that’s sharing a candlelit meal together or watching a film that you both love.
Go through cherished memories together - Dig out old photographs and videos, listen to music that holds fond memories, and read old love letters. Reminiscing on the old times can bring us closer together.
Focus on the little things - Whether it’s a foot rub, a cup of tea in bed or running a bath, there are little things that we can do to express our love for our spouse. Small, romantic gestures don’t need to take up lots of time and money.
Are there things our partner is well and mobile enough to do for us too? A simple cup of tea in the morning can go a long way to making someone feel loved and appreciated. We may need to communicate our needs to our partner rather than hoping that they realise without our input.
Try new things together - Couples that grow together, stay together. There are lots we can do even through health limitations. It could be trying new cuisines, watching new films, discovering new music together or taking online classes. Quality time can be bonding.
Kiss and cuddle - Studies show that kissing releases the bonding hormones oxytocin and serotonin, which make us feel connected. If we still want to be intimate with our partner, kissing and cuddling can help us to feel close.
The bottom line
No matter the length of time we’ve been caring for a partner, we may be able to rekindle a relationship by communicating our needs, staying flexible and taking steps to stay connected.
Of course, relationships can change over time - and that’s OK too. We might have come to the end of this blog post deciding that we want a different dynamic with our partner.
We know from our community, that some of us want to leave the relationship and that this can feel very difficult. We also know that many of us find ourselves caring for ex-partners, for a variety of reasons.
Whatever our situation, it’s important we factor in showing love to ourselves. Talking to ourselves kindly and making time for self-care can help us navigate a changing relationship.
Dealing with an end-of-life prognosis?
If we’re dealing with end-of-life care or a terminal prognosis, things can be especially hard. Please remember we’re here for you, in our carers community.
There is often bereavement support from your local hospice or the condition-specific charity, supporting your partner. And there are many organisations specifically supporting bereavement.
We have some content that may help with support at this very difficult time. When you’re ready, please pop the kettle on a have a gentle read:
Legal blindspots, when caring for your partner - Mike talks about how he navigated legal blindspots, whilst coming to terms with and caring for his husband Tom, living with dementia.
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