When the person you care for only accepts help from you
As unpaid carers we often experience high levels of stress, burnout, and exhaustion.
But this can be even more likely if the person we look after refuses help from anyone but us.
This will not only increase stress, but impact our mental and physical health. Not to mention putting additional strain on our relationship with the person we care for.
“I have this sick feeling in the pit of my stomach almost constantly. My parents are refusing all outside help except, from me. I can't cope. They have had a care plan put in place but simply refuse to let the carers in.”
But what can we do about it? Understanding how to navigate this issue is crucial for our quality of life, health, and even our ability to continue caring.
“We never want to admit we need help, but it makes life so much better when we do.”
Understand the challenges
Whether it’s snuck up on us little by little or we found ourselves looking after someone overnight, there are several reasons we might end up in a position where we are providing the majority of someone’s care.
While we may feel we know the reasons behind our situation, sometimes looking at them more closely can help us to find solutions.
The person we care for may not realise how much we actually do, and how it impacts our life.
My parents always said, "Oh my daughter does everything for us!' Yes, that daughter is me and I never signed up for this!"
Because of this, we often see in the community that sometimes the person being cared for refuses to pay for outside help because they believe family should be able to do it for free.
There are also specific situations, where conditions such as Dementia can be hard to accept by the person with the diagnosis. This can make it challenging for them to come to terms with how much support they actually need.
“My mum was told she had dementia today but she won't accept it. How do you cope with someone who is in complete denial?”
Our caring responsibilities have been going on longer than we expected, or the level of care has slowly increased over time to a point we can no longer cope alone.
"My Dad is nine months into a terminal cancer diagnosis and says he only needs my sister and me! I gave up work to care for him as I thought it was a short-term thing and wanted to do the best I could. I’m on my knees. I wake up every day feeling hopeless."
We’ve tried to broach the subject of getting more support before but they were dismissive.
There can be a number of reasons that the person we care for only wants help from us.
A common pushback we can face from the person we look after is that they don’t feel comfortable with people they don’t know. Many of us don’t like having strangers in our house at the best of times, especially when we are feeling unsettled or vulnerable.
It can also feel quite humiliating, depending on the level of care required. And the care needs assessments themselves can feel like an invasion of privacy.
"My Dad had a care needs assessment yesterday. It identified that he needs help from carers but he doesn't want them. Social Care tried to do a financial assessment - but he thought it was 'none of their bloody business, what we have'."
It feels like too much effort to make a change.
Change can be hard, for both the person we care for and us. It often requires more effort from us upfront to get new routines in place over carrying on as things are.
For the person we care for, they might not understand why change is needed, if in their eyes everything has been ok until now.
Often when we are at capacity it can feel overwhelming to even think about making changes. This can be one of the most complicated feelings to unpick - especially when we know a change can help make a positive difference.
In these cases, reminding ourselves why the effort is worthwhile may help. Is there a project we’re really excited about? Maybe a book we want to read, but never have the time? Or do we just really need a way to have a good night’s sleep?
"If you can allow yourself the investment of the time and energy in the first part in a few weeks then it will be ticking over."
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Internally we are resigned to the situation.
Sometimes the challenges stopping us from changing anything can also be coming from us.
This can be due to feelings of obligation, and guilt. Especially for those of us in different cultures where caring for family can be an expectation. Or we might feel like we have failed if we admit we need extra support.
Sometimes we don't trust others to do the job as well as we would ourselves, or to understand our loved one as well as we do. This is completely understandable. But we are just one person. We cannot do everything.
Understanding the impacts of doing all the caring
Understanding the impacts of having too much on our plates can be a motivation to help us make a change.
Burnout is a common challenge that carers face, and this can be more likely to become an issue the more we take on. Reaching burnout not only has significant impacts on our physical and mental health, but can even mean we need emergency care support or are no longer able to continue caring at all.
If our entire lives revolve around looking after someone else, our quality of life will be greatly reduced. Carers shared they laugh significantly less than the NHS reported average for adults.
Creating the space to remember who we are, and do more of what we enjoy or are passionate about are strong ways to protect ourselves from mental health challenges such as anxiety or depression.
“Yes, your Mum is important. But your mental health is paramount too.”
Feeling we are doing too much or trapped in a situation we don’t want to be in can also add significant strain on our relationship with the person we care for. Potentially putting them, or us, at risk. If this feels familiar we might want to read caring for someone we don’t always like.
What to do if the person you care for refuses help from anyone but you
We’ve accepted we need to make some shifts to our situation, but what can we do about it? Knowing others have been in the same boat can be comforting and motivating.
Here are some top tips from carers who have been through it and come out the other side.
1. Identify what support you need
Accepting that we need help is not easy, but it is the first step to really make a difference.
"It wasn’t easy to admit I needed help after all the years I have managed on my own. But we have a really good support package in place now. My husband is about to have his first ever week of respite and he’s looking forward to it."
We can then start to identify what tasks or areas of our caring role we could delegate to others, such as cleaning, shopping, or social visits.
Think creatively here. If there are things we aren’t good at, such as financial admin, why are we the ones doing them? Is there a trusted friend or family member who is great at finance who could help?
"I’m terrible at sitting still. I hate it. So our friends have taken it in turns to visit my partner in hospital so I can get a chance to rest before she comes back home."
2. Recognise and acknowledge our feelings
Understand that feelings of guilt and resentment are normal. Ask yourself what you would say to a friend in your situation.
"Feelings are such a nuisance, but spotting when they are getting in the way is crucial."
We might benefit from reading a carer’s guide to making friends with our feelings or taking small steps to getting therapy.
3. Have a conversation with the person we care for
While it can be challenging, having a conversation with the person we care for before making changes can be help in the long run. We can try to calmly explain why it’s important to get more help.
"It's OK to tell your mum that you need support, even if she does not."
Sometimes reminding them that additional support is in their best interests can also help. Especially if we are getting to the point we are unable to care for them safely.
"Mum is so scared of being put in a home. I keep telling her we are doing our utmost to keep her in her own home but she must accept help otherwise the decision may be taken out of our hands due to safety issues."
We might want to prepare some notes to help us discuss our needs with the person we care for and other family members.
We should be honest about our limits and the necessity for additional help. Many of the tips shared in this blog can help us with having difficult conversations with friends, family and the person we care for.
4. Set clear boundaries
We are likely to get pushback from the person we look after. Maybe even our family and friends - especially until they see that changes can actually be positive.
In this case, we need to practice saying "no" and setting clear boundaries - something that doesn’t come naturally to many of us. This not only helps us manage our time and energy, but also teaches the person we care for to respect our limits.
"You will not survive the course without learning to set boundaries. And it is a long, long course."
"I have told my Mother-in-law I can’t change her pad, cut her toenails or her hair - it’s too personal. We now get professionals to come in and do them."
5. Get more people involved with the responsibility of caring
There are a number of ways we can start to share the load when it comes to caring.
We can speak to friends, neighbours and family members that we trust. Share how we are feeling and why we need help, and work to get things off our plate. Even if it’s the odd run to the pharmacist, picking us up groceries when they go, or dropping off batch-cooked meals. Little things can all add up.
"My friend asked what she could do to help and I asked her if next time she was cooking a load of soup she could make a portion for me and Mum. She did, and it was brilliant!"
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This guide goes through some steps to help us widen our circle of care - the number of people who help with the caring role.
There may also be official support or services which we could be benefiting from. If we haven't done so already it is worth completing both a Care Needs Assessment, and a Carer’s Assessment. While these can feel time consuming and like another to-do, they may result in access to respite, direct payments, services, paid carers, accessibility home improvements and more.
6. Start small
A big change overnight is always likely to feel distressing, so it can be helpful to start small. Introduce help gradually, and slowly start to spend more time away if we are able.
"Some care agencies don’t wear uniforms so I managed to get them in as ‘cleaners’ and then gradually they were able to gain Mum's trust. She was resistant but I couldn't manage without them so I made it happen. It worked very well."
One way to do this is to frame new support as a ‘friend’, rather than a cleaner, carer, and so on. This can help to make it feel less official, or intimidating for the person we care for.
"I managed to get a lovely lady to come in and give them lunch on a Saturday. I introduced her as a friend. Mum never wanted this, had hysterics, but now loves seeing her."
"I had such barriers from my parents when I suggested an assessment, such as “we don’t need help”. But after several months they were very relaxed with the lady who comes twice a week. We now have carers in to wash mum, and Dad has realised how much less stressed he is."
7. Accept there is unlikely to be an overnight fix
While it is worth starting the journey to take some of the pressure off us, in most cases it is going to be a marathon. Not a sprint. Unless there is a reason we need to step away from caring urgently, things are unlikely to change overnight.
"I’m exhausted but it’s not as bad as it was in those early days when they wouldn’t allow anyone else in."
"My mum was very reluctant to have any external help, but she really looks forward to the visits now."
"Knowing I have extra support in place means I am less stressed at night and sleeping better."
8. Remember our rights
If we are really struggling to get the support we need and feel like we can’t keep caring, it’s important to remember we don’t have to. By law, no one is obliged to care.
While it can be really hard to admit, sometimes the best thing for both us and the person we care for is to handover to the professionals. Here are some words from carers who have been through it.
"I'm about to go through a massive change as a full-time carer to my adult son. I've reconciled with the decision, but it hurts like nothing I've ever felt before. You have to look after yourself."
"I didn't want my husband in a home. I was determined I could keep him at home with me. He is now in a lovely nursing home that understands his condition. He has fallen numerous times, I dread to think what would have happened if he was at home. I now know I couldn't care for him. Sometimes a good nursing home is the only answer. Just make sure it is the right one."
"I am still there for my mum as a daughter but not a carer. It’s been a lot less of a strain on me and I get more time with my other family. I had been putting mum's needs before all others. I know it is hard to do but take care of yourself."
If we have made the difficult decision to step away from our caring role, here is some support on how to cope when our caring role comes to an end.
What's next?
Caring for someone who refuses help from anyone else is a challenging journey, but you are not alone.
By starting the conversation, gradually introducing support, setting boundaries, and accessing support services, we can improve our well-being and continue to provide care effectively.
To start, think of one task you can delegate or one boundary you can set today. Even one small change can make a difference in taking stuff off our plate. And to help us to feel more in control and motivated.
Share what change you will make in the Mobilise Hub, ask other carers to keep you accountable, or get inspiration from what changes they are making.
