This post is for anyone who provides significant levels of support for dependent adults, from full-time carers for elderly parents to younger adults juggling their day-to-day life with supporting a sick partner. You can be caring for anyone from your partner, parent, adult child, sibling, to your grandparent.
First we’ll deal with some practical matters relating to care, and then we’ll move on to the emotional side of caring.
Build a ‘care team’
When you’re caring for a family member or partner, it’s easy to feel like you need to handle everything on your own. The truth is, caring doesn’t have to be a one-person, all-or-nothing role and getting help is not failing – sometimes it’s the most sensible thing to do.
You can’t be a superhero, and it’s better to ‘outsource’ some parts of care than to provide care that meets nobody’s needs. Ask to share the load with family and friends. Offer tasks they feel comfortable with, and regularly share details of your caree’s ongoing needs to get everyone on board.
Many people feel resentful because other family members can’t – or won’t – help with care – we wrote a whole post on caregiving and sibling resentment. Another option is to bring in professional caregivers who can develop a personal relationship with the person you care for. Care Professionals don’t have to replace your own care – they can simply add an extra pair of hands and work as part of your team.
Manage your time
Time management is all about prioritising and accepting that you just won’t be able to do everything. This is especially important if you’re caring for someone while in other employment. Some things just have to be sacrificed and it helps to group your tasks according to urgency.
Label your tasks as ‘Urgent – can’t wait’, ‘Important – can wait’, ‘Nice to have’, and so on. This will help you to see what needs doing right away, and if there is more than one priority you have to consider getting someone else to do it. Planning properly can give you more confidence when asking other family members for their contribution.
Sometimes, it’s learning to distinguish between needs and wants to relieve some of the pressure on you. A need is much more important than a want. Your mother may want you to reorganise her kitchen, but if she needs you to collect her medication that matters far more!
Get it all out of your head and onto paper, or a productivity app like Evernote or Trello. Ticking off completed tasks can be rewarding and contribute to a sense of accomplishment.
Watch for burnout
Becoming someone’s caregiver is physically and emotionally demanding. You’re handling all this while at the same time dealing with everyday life! All the demands will eventually take their toll.
Burnout can sneak up on you without you noticing, and is a mix of exhaustion, stress and depression.
Early signs of burnout include:
- Lack of interest in social activities
- Loss of interest in activities you normally enjoy
- Anxiety and feeling low
- Changes in sleep patterns and appetite
- Overreacting to minor problems
It’s best if you can catch the early warning signs and do something about it, before they develop into full-blown burnout.
Signs you already have burnout:
- A lack of energy, however much you sleep
- Getting sick more often, and never feeling quite 100%
- Your life revolves around caregiving but you gain little satisfaction from it
- Difficulty relaxing
- Feelings of helplessness or anxiety that won’t go away
- You find yourself increasingly angry with the person you’re caring for
Don’t be afraid to admit when you’re feeling burned out. Allow yourself some space to gain a better perspective. Caregivers often feel guilty about taking time for themselves but you won’t have anything to give otherwise.
Ask family members to step in while you have a break. If this is not possible, consider a Care Professional to relieve some of the pressure.
Separate out ‘chores’, ‘companion’ and ‘you’ time
In your role of a family caregiver, there are many things you will need to do for your loved one to help them with day-to-day living, as well as ongoing healthcare. This can often come at the cost of ‘quality time’ with them – something you both used to enjoy.
Even if you have to pop in every day to see to the ‘chore’ aspect of caring (eg helping them get up, showered or take medication), make sure you also earmark some time to just talk, or share a common interest. Getting help from professional caregivers with the chore side of things can free up more of your time to spend enjoying the company of the person you love.
Plan for the future
Caring for someone is ongoing and the situation has the potential to change rapidly, either soon or at some distant point in the future. Even young, healthy people can find themselves in situations they could never have imagined. Without a plan, the result can be chaos.
The primary reason people don’t plan ahead is because they find it very difficult to come to terms with potential consequences of illness, old age, and even death. They want to live in denial rather than deal with practical matters.
Someone with an illness may not want to face the reality of their increased dependence on others. Elderly parents might want to avoid the fact they need to make plans to go into a nursing home or make out a will. One parent might be stubborn about looking after the other, even when they’re clearly not coping. The person you’re caring for may be deeply afraid.
It’s about recognising the powerful emotions at play and handling the situation as sensitively as possible. Some conversations are very difficult, but your life (and theirs) will be made much more difficult if they don’t have their affairs in order or their wishes are not known.
Talk about someone else in a similar situation (this could even be a person on TV) and ask your loved one what they would want to happen.
Try strategies like:
- Start planning as early as possible. Mention that you are making a will and ask your caree if they want help with doing the same.
- Seek advice from an attorney together. Your loved one may be more receptive to advice from professionals. Getting advice is especially important when it comes to Power of Attorney and deciding what will happen if your loved one can no longer handle their own affairs.
Find support networks
Maintaining friendship networks is so important for your own well-being and for giving you the energy to keep on caring.
Unfortunately, caregivers are at particular risk of feeling socially isolated. They don’t have time or energy to keep up with their friends, as it is all spent caring. Or, their friends don’t understand their situation and caregivers feel like they have nothing else to talk about. It’s a tough situation to be in.
It is really important to keep talking to others about what you’re going through, particularly when you’re really struggling – even though this is probably the time you want to shut yourself away the most! If you have friends who can’t understand or empathise, use your time with them to escape and think about the other things that matter in your lives. Normality will give you strength and perspective.
Online support networks can also be your lifesaver, especially if you don’t have friends or family members who can relate. Thanks to the development of modern technology, care communities are always just a few clicks away on your smartphone. Here’s a list of some major UK carer forums:
In addition, there are a lot of condition-specific groups, many of which have support groups or forums for family members and caregivers. Just do a search in Google for your specific condition plus the word “forum”.
A huge number of charities also have support networks, from forums to local groups – with regular meetups in real life if you prefer!
Many people have reported increased well-being after connecting with other caregivers. It has shown them they’re not alone and helped them make sense of what is happening. Other caregivers can be invaluable resources for practical advice and tips based on their own experiences. They understand your experiences and help you feel like you’re not alone.
You can find others in very similar positions, or just read the conversation threads to help you address worries and answer questions.
Talk to your employer about being a caregiver for a family member
Your work or career can suffer due to your caring responsibilities, leading to work conflicts and financial pressures.
A government report from 2015 shows that more than a third of those who are combining work and care had considered giving up their jobs, opting instead for part-time work. Women (who make up the majority of primary caregivers) can be restricted to low-paid part-time work to enable them to balance their care responsibilities. This may lead to them struggling financially and add to stress.
It can be really difficult to ask for time off if you’re not sure whether your employer will support you. It somehow feels more socially acceptable to ask for time off to look after a sick child than to take your father to his doctor’s appointment. If you need to take time off to care for dependants, make sure you know your rights.
Even if you don’t expect to take time away from work, it is well worth talking to your employer. There will be days when you are not feeling as resilient as usual, and you simply will not be able to apply yourself 100% all of the time. If your manager knows what else is going on, they will be able to contextualise this. They may even be able to help.
Watch out for the strain it can put on your relationships
Care responsibilities mean that all your relationships are put under huge pressure. Even excellent ones can get difficult, as people being cared for can often take out their frustrations at being ill, or dependent on the ones closest to them.
Caring will not be a way to fix any issues you have with the person you’re caring for, though you may harbour that hope. Unfortunately, they may not suddenly become grateful for all you’ve done, or treat you with the love and respect you have been hoping for.
Siblings sharing joint care for parents often leads to resentment, dredging up old family issues that you thought were long buried. Your other relationships can be become strained as you devote more time to caring and less time to your partner or children.
Experiencing friction in your relationships is perfectly normal. It’s a challenging situation for everyone, but remember that everyone is usually trying their best. Even if the care recipient has done something wrong, it’s unrealistic to expect them to fix it at this time of their life, especially if they are struggling with cognitive impairments.
Take time out from people who are upsetting you. Approach the situation rationally and focus on the best outcome for your caree. Accept that people are probably not going to change.
Acknowledge the difficult emotions
Caregivers can often put enormous pressure on themselves to feel caring all of the time. This is unrealistic and impacts your self-esteem when you can’t live up to your own expectations. As long as you’re not purposely taking it out on the person you’re caring for, you have the right feel any way you want to feel.
When caring for someone you love, you won’t always feel happy, giving or caring. Sometimes you may even hate the person you’re caring for.
Caring for dementia sufferers can be particularly difficult due to the behavioural challenges (especially if they stop remembering you). Someone behaving with stubbornness and irrationality can be incredibly frustrating, even while you know it’s driven by their disease. You can be dealing with huge personality changes and feel like you no longer recognise this person. They can even become abusive towards you.
Taking care of your parent means caring for someone whom you are more used to caring for you than the other way around. You may feel betrayed or angry. Giving into your rage and shouting at someone you’re caring for can lead to intense feelings of guilt.
You may feel emotions people more commonly admit to, like:
- Stress
- Sadness
- Guilt
- Concern
But also less ‘acceptable’ emotions, like:
- Anger
- Impatience
- Resentment
Remember that all emotions are valid, but you don’t have to act on them. Sometimes acknowledging your feelings can be enough to release you from their grip. Speak to a trusted confidante, or talk to a professional about your feelings.
Always look at the context of your feelings and what you can learn from the situation. Forgive yourself for not being perfect and recognise the good things you have done.
Accept the guilt
Caregiver guilt is a very real phenomenon, affecting your self-esteem, well-being and ability to cope with life in general.
If you have feelings of guilt it means you think you are not living up to an ideal, whether that’s a self-imposed ideal or external expectations. You may be doing everything you can for the person you’re caring for, and yet the guilt still doesn’t go away.
Guilt can arise from situations like:
- Not having enough time for caring
- Not giving your best at work due to caring responsibilities
- Not being patient enough with your caree
- Neglecting your other relationships in favour of caring
It’s very normal to feel resentful about what you are giving up, especially if you feel like you’re being taken for granted. It’s also very normal for these thoughts to be quickly followed by feelings of guilt and self-loathing for thinking in such a way!
Guilt is draining and counter-productive, but can be nearly impossible to shift. Follow these steps:
- Recognise the difficult feelings
- Talk about it with someone impartial to help you gain perspective
- Remind yourself of all the good things you have achieved
- Adjusts your expectations of yourself to be more realistic
- Be kind to yourself – above all!
Practice gratitude
It sounds strange, but gratitude really helps improve your perspective. It’s not about being unrealistically happy but finding what you can appreciate in every situation.
Getting into a state of gratitude is not always easy to achieve, and you shouldn’t beat yourself up if you find it impossible at first. It’s easy to focus on all the bad things in a situation, especially if you’re feeling run-down and stressed.
Even when finding things to be grateful for can be laughable, think of:
- All the things you’re grateful for about the person you’re caring for
- The care that they may have given you in the past, that you want to repay
- The happy times you have shared together
- The small wins, like when you get to the doctor’s on time, or a great new professional carer to help you out
Make time for self-care
Looking after yourself is just as important as providing care for someone else. You simply can’t be a good caregiver if you’re exhausted and upset all the time, although it can feel self-indulgent to make the time you need for yourself.
You have to look at self-care as enabling you to keep caring for your loved one in the long-run. If you neglect yourself then you are going to burn out much more quickly.
Ways to take care of yourself:
- Make sure you sleep enough (most people need around eight hours a night)
- Maintain personal relationships that bring you joy
- Talk to someone who is good at listening well
- Take time for the activities you enjoy, even if it’s ten minutes reading a book a day
- Spoil yourself in simple ways like taking a bath, or getting a massage
- Do whatever you need to maintain your sense of humour – many caregivers say this gets them through the stressful times
Conclusion
That concludes our post on how to deal with being a family caregiver. There is far more advice out there but we hope this can help you begin to work through some of the most important issues you might be having.
Overall, just try to be realistic about the time you have to give to caring. Go into this situation with your eyes open, acknowledging the enormity of the task and what you would be giving up. Don’t be afraid to ask for help (whether practical or emotional), and try not to beat yourself up if you think things have gone wrong.
Remember – you’re doing an incredible thing for someone else. It may be a tough journey, but you will never regret that you made the decision to care for someone.
Appreciate yourself and celebrate yourself, remembering that you are strong.
At Home Instead, we can help you find experienced local Care Professionals to assist you in your care responsibilities. If you’d like to find out more about the home care services we offer, please get in touch.