Many caregivers report personal satisfaction from their caring role. However depression, emotional and physical exhaustion and general poor health are common. The Princess Royal Trust for Carers (2011) found that:
- Two thirds of older caregivers have long term health problems or a disability themselves
- One third of older caregivers reported having cancelled treatment or an operation they needed due to their caring responsibilities
- Half of all older caregivers reported that their physical health had got worse in the last year
- More than 4 out of 10 older caregivers said that their mental health had deteriorated over the last year.
Caring can be an emotionally draining experience. Caregivers have to come to terms with irreversible and upsetting changes in their relationships, like a child now caring for a parent. Caring can also be very lonely. Many caregivers report being cut off from their former social circles which brings feelings of isolation and depression.
When you’re caring for someone with dementia, it can be easy to ignore your own needs and to forget that you matter too.
But it’s much easier to cope if you look after your own health and well-being, and there is lots of support available.
Caring for a person with dementia can be both rewarding and challenging. The needs of the person may often come before your own and this can mean that you struggle to manage everything. However, it can be easier to cope if you look after yourself properly. While you might feel that this is not always possible, it is important for both you and the person with dementia.
There are positive aspects of caring, such as learning new skills, building on existing skills strengthening relationships and supporting someone who is important to you. However, it can also be both physically and mentally exhausting. It affects all aspects of your life and can lead to increased isolation, stress, conflicting emotions and sometimes depression. Caregivers also have their own physical and mental health needs, which can be overlooked when caring for a person with dementia.
It is important to look after yourself so that you do not become unwell and can continue to support the person you care for. Maintaining good health and emotional well-being will also help you in your caring role and in continuing your relationship with the person you care for. The type of support that caregivers need will vary depending on the individual circumstances. Different caregivers will also have different expectations of their role as a caregiver (eg a spouse or a young caregiver).
One of the most difficult things to overcome when caring for a person with dementia is the range of emotions you experience, such as anger, loneliness and guilt. Caregivers often say that they feel guilty for thinking about themselves when they are caring for a person with dementia. Being able to address these feelings is important, as they can affect your well-being. Many caregivers find that just talking about their situation with other people helps.
This can be especially true if the people you talk to have experience of caring for a person with dementia. You can get different types of support from different places:
- Friends and family can provide a variety of support, both emotional and practical. Being able to talk to them about the situation and how you are feeling may help.
- Doctors, counselors and other professionals can offer support.
- Local support groups are available in many areas and are a great source of support and information. You will be able to talk to people experiencing a similar situation and be able to share ideas, tips and strategies about caring.
- Online discussion forums can be a helpful source of support and practical suggestions, or simply a place to let off steam after a difficult day.
- Your relationship with the person with dementia may change and this can have an effect on how you feel towards them. It is important to be able to talk about these feelings with someone you trust. You should not be afraid to say how you feel – it is natural to be confused, upset or angry at times. You may find that there are some aspects of caring you can manage easily, and others prove more difficult. Everyone will experience caring in their own way.
Taking a break
It can be difficult to find time for yourself when you are caring for a person with dementia. When you do manage to get time to yourself, you may want to use it to catch up with other tasks such as housework or managing finances.
However, it is important to take breaks and continue to do things that you enjoy so that you don’t become overwhelmed. This could include having some ‘time out’ during the day to do a crossword or go for a coffee, having a break (when someone else is looking after the person or they are at a day center), or going on vacation.
By taking regular breaks you may find yourself better able to support yourself and the person you care for. It can be hard to take a break from caring and you may feel guilty, but all carers deserve a break and you will feel better for it.
You don’t have to take long breaks from caring, but a short time to enjoy yourself could make a difference. Try to schedule in something you enjoy every day, whether it is on your own or with the person you care for. By having a break, the person with dementia may also get to experience new things and have a break from their routine. Types of break might include:
- having a cup of tea, reading the paper, listening to music, or going for a walk
- looking at photos together
- going out for a coffee or drink
- meeting a friend or going shopping to get out of the house
- pursuing interests, hobbies and activities that you find enjoyable and give you a change from your caring role; this may help you to feel less isolated as well
- having a short holiday, whether it is a few days or a week.
Coming back to the relationship refreshed will be good for you and the person you care for. You could ask friends or family if they can help out – it may be for a couple of hours or they may be willing to look after the person for a few days. There may be local day services available, or you may be able to arrange for respite care. If you don’t have friends or family who can help, or you are struggling to take a break, talk to your Doctor or local social services as they may be able to help.
Your health and well-being
Caring can have a significant impact on your mental and physical health and well-being. Therefore, it is important to look after your health to support you in your caring role.
- Try to eat a well balanced diet, with at least five portions of fruit and vegetables every day. A healthy diet will be beneficial for the person you care for too.
- Taking regular exercise is good for your health – both physical and mental. You could try going for a walk or taking up an exercise class. Whatever you choose it should be fun and something that you want to do.
- Having hobbies and interests is also good for your mental and physical health.
- Try to get enough sleep. Sleep is very important as it helps the brain and body recover from being tired. It can be difficult if the person you care for has disturbed nights. You may find it easier to sleep when the person you care for is sleeping, and may be able to take advantage of daytime naps. If you are unable to get enough sleep because of the person you care for, talk to your Doctor. They may be able to suggest services or techniques that can help.
- If you have a physical disability or a sensory impairment then these will affect your caring role. It is important to make sure you are receiving all the support you are entitled to. Speak to your Doctor or social services department.
- If you have to help the person move around, be careful of your back. Speak to your Doctor for advice; they may be able to refer you to a physiotherapist or an occupational therapist. Some local carers’ organizations provide training sessions on moving and handling. Contact your local caregivers organization, Doctors or social services to find out what is available in your area.
- See your Doctor on a regular basis to check up on your health.
- If you are struggling to cope and feel depressed, anxious or stressed, talk to your Doctor. There are options available such as counseling or extra support services, and these problems are easier to manage at an early stage.
Your financial wellbeing
Your legal and financial situation may be affected if you are caring for a person with dementia. There are a number of areas to think about. Visit this link to get more information on your financial situation and Government benefits
If you are caring for someone with dementia, you may want or need support at some point. Carers who have less social support are more likely to experience stress and depression. You will benefit from different types of help and support, ranging from practical care to give you time off to having someone to talk to about your feelings and concerns. Not every type of support suits every carer and there may be some trial and error in finding the right services for you.
Ask what is available in your area. Even if you don’t need it at the time it may be useful in the future. You could ask your local Alzheimer’s Society, Doctors, memory clinic or social services department.
Support from local services
The memory clinic may have support programs (such as a support group) in place for family carers, as well as people with dementia.
Support from Friends and Family
Even though you may be coping well now, caring for a person with dementia may gradually become more demanding, both physically and emotionally. You may find involving family and friends helps to give you a break and reduce some of your stress.
- Try to involve other family members. Even if they can’t offer day-to-day care, they may be able to look after the person while you have a break, or they might be able to assist in other ways, such as helping with finances.
- Try to accept help from friends or neighbors when they offer it. If you say you can manage without help, they may not think to ask again.
- It may help to suggest ways that people can help. Sometimes people may not offer because they don’t know what they can do. You could ask them to stay with the person for an hour, or to go for a walk with them.
- Let people know how valuable their support is.
- It may help to talk to your family and close friends about dementia. Tell them what life is like for you, and for the person you care for. This may help explain what is happening for you and the person with dementia and will help them understand how much you do.
- Listen to others who may be able to share their own advice and discuss their own experiences.
Ask for help
Sit down with the members of your family and ask what they are willing to do to help. Give them ideas and suggestions. Don’t just assume that they know what you need. They can’t read your mind, and they may already be doing what they think is helpful. Assume that most people are doing the best they can under the circumstances. While this is not always the case, most often it is.
Recognize that you are dealing with a stressful situation. Some people overlook the problems they are experiencing because they slowly take on more and more responsibility. Recognize all that you have taken on and congratulate yourself on what you have been able to do. Then see about getting any help you might need.
Keep family members informed
Just remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing they’ll be to pitch in and help.
Care giving isn’t easy, and it’s important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyone’s benefit.
Coping with conflicting demands
As a caregiver you may find that you are often faced with conflicting demands on your time. This can be difficult to manage and can leave you feeling exhausted – both physically and mentally.
- Recognize your own limits. You are only one person and there is only so much that you can do. Many caregivers feel torn between responsibilities – especially if they are trying to care for children, look after someone who is unwell, or go to work as well as caring for the person with dementia. As much as you may want to be able to manage everything it is not always possible.
- When you have a lot of conflicting demands it may help to prioritize the things that you must do and the things that are less important.
- Talk to others about what you are going through.
- Don’t be afraid to ask for help and support if you need it. Find out whether there are any services available for you or the person with dementia in your local area.
Don’t be too hard on yourself
At times, caring may feel like a thankless task. The person with dementia may not seem to appreciate your efforts and may think they can do everything themselves. Others may be unaware of how much you do. You may feel guilty about your situation and wonder ‘why me?’ You may feel that you are not doing as well as you should be because you get angry and upset and often find yourself struggling with being a ‘caregiver’. It might feel like other caregivers manage better than you do. Try to remember how well you are doing, managing a difficult situation and supporting someone who needs you. Nobody is perfect and there will be a variety of conflicting emotions when you are caring for a person with dementia.
The abilities of the person you care for will change as dementia progresses. It can be very difficult as a caregiver to see the person you care for struggling with things they used to be able to do. It is important to remember that while the person may not be able to do some things, there will be other things they can do. You may find that the person acts in what you consider strange ways, but these actions will mean something for the person with dementia. This can be very difficult to cope with but it can help to remember that the person with dementia is responding to their situation, not trying to be difficult.
Caring can be hard but there can also be positive experiences. Just because a person has dementia, it doesn’t mean there won’t still be good times for you to share. It may be these good times that help you manage the difficult side of caring and give you the strength to carry on. When you are experiencing difficult times, you don’t have to go through them alone – there is help and support available.