Supporting someone with an ongoing or terminal condition puts an enormous strain on your own mental and physical health.
You find yourself faced with a whole range of stressful experiences – both practical and emotional. Changes in yourself occur as time and the condition progresses. Emotions swing between extremes of high and low.
Arm yourself with a toolkit of strategies
To survive and maintain your own mental health and well-being it is necessary to have a toolkit of strategies to use as and when you need them. Here are some suggestions for your toolkit. They have been provided by people who have been through the experience. They will help you find a balance between what you do for the person you are caring for and yourself to help you maintain your own mental health and the ability to look after your loved one.
You may ask yourself: ‘Why is this happening to me? How am I going to cope?’ You probably get tired and feel alone which may be connected to a sense of loss. It is natural to be angry.
You may endure guilt rather than anger, which can lead to remorse and may be masking underlying anger. Guilt can be fed by feeling helpless, not being able to do enough or not wanting to do anything. Ways to cope include diverting your energy by:
- Keeping a daily journal. Vent your emotion in a harmless way by writing about it. This need only take a few minutes each day. It also enables you to analyse the causes of your anger or guilt, probably a combination of tiredness and stress. Coming up with solutions to these two problems will also help to eliminate anger.
- Exercising. Walking, swimming or running and other forms of exercise are not only healthy but will also allow you to think through your situation. Stop at intervals to practice some form of meditation or breathing slowly and deeply, or using other methods of relaxation.
- Talking through any unexpressed anger. The anger may be rooted in the past and be related to past neglect or events. Do this with a friend, Minister or counsellor. There are help hotlines which you can call, talking anonymously should you want to. It is not fair to take this out on a parent or partner who is too sick to understand or no longer remembers.
This may spring from feelings of not being up to the job, imperfection and inadequacy – a cloud that is ever present for most carers. To combat this:
- Create a set of rules – no more than ten. Do this by looking at the situation from the perspective of the person for whom you are caring. What do they want, what is most important to them? You will think of more than ten, but select the ten most important rules from those you list. These, viewed from the angle of the person you are caring for, might include:
- Provide care with dignity and treat me with respect
- Keep to familiar routines
- Encourage me to use my abilities fully and be independent as much as possible
- Let me do things at my own speed
- Include me in family activities as much as possible
- Re-assure me by regularly smiling, giving me a kiss or holding my hand
- Compliment me on simple achievements
- Allow for a quiet time together each day – reading to me, listening to music or sitting in the garden
- Do not allow me to be over medicated
- Balance my care with looking after yourself
Having these rules will allow you to care with compassion and have some peace of mind. It will also be reassuring for the person for whom you are caring.
- Simplify life as much as possible. Reduce your commitments and workload to what is essential. This might include stopping doing things that the person you are caring for no longer enjoys, preparing simpler meals, reducing the number of hobbies you do, getting someone in to do some of the gardening or house maintenance tasks, and so on. Focus on the tasks which are important.
- Forgive yourself. On bad days you will have uneasy thoughts: ‘There won’t be any relief until he/she is dead’, ‘I want my life back.’ It is normal to have thoughts about being released from a heavy burden. Be kind and forgiving to yourself.
Over a long period of caring for someone feelings of depression will probably come and go. It will help to:
- Maintain a positive attitude. Do this by focussing on what is going well instead of what is going wrong. If the person you are caring for achieves something – no matter how small – say positive things to them and to yourself: ‘That went well!’, ‘You made a good job of that’, ‘I enjoyed listening to that music with you.’ If something negative happens, try to turn it into a positive by using it to do something constructive. For example: An emergency trip to the GP could be used to do some shopping on the way back. A relative not turning up to give you a couple of hours free time; the time might be used to do a reminisce activity with your loved one. The more you do this and accept situations that would normally upset you the more comfortable with yourself you will feel and begin to be at ease with the situation.
- Prevent fatigue. This can affect you both physically and mentally.Hobbies and otherinterests are essential for relaxation and well-being. Consider:
- Giving up pastimes which are demanding and keep those which are less tiring but give pleasure and enjoyment.
- Building short periods of relaxation into your schedule once or twice a day. This could be watching TV after the person you are caring for has gone to bed, reading a book or magazine or just sitting quietly in the garden. Or doing something else that is not essential for fifteen or thirty minutes.
- Planning respite periods from caring – this might be day-care once or twice a week, a day out with a friend or going away for a short break.
- Dealing with frustration, anger and stress by lowering your expectations. Setting high standards and watching the person fail on a regular basis is a real downer. Instead set goals at a low level. Then, when the person exceeds expectations, both of you will have more positive feelings.
Stave off feelings of hopelessness and inadequacy
- Always have something to look forward to. This might be a short break, a night out, a meeting with friends, a visit to the theatre or doing something you enjoy. Before each event takes place make sure you have at least one further event planned. Planning ahead like this will avoid you feeling down after each event.
- Maintain a sense of accomplishment. These should include small achievements unrelated to caregiving. An email or card sent to keep in touch with friends, making a gift for a grandchild, writing a poem, weeding a small area of the garden, painting or repairing some fencing. Have a few purposeful and achievable projects in mind for the year.
There will also be your accomplishments related to caring to feel proud of. These could be solutions to challenges you have come up with, such as resolving a communication, memory or eating problem.
- Share feelings and thoughts with others. Join a support group. This will enable you to share experiences with people who understand what you are going through. It will also help replace some of the companionship you are now unable to maintain. Also reach out to family and friends for both moral and practical support. Doing this will help reduce any sense of isolation you feel.
A major cause of stress is often that feeling of not having control over your situation and not being able to get things done. Here are some suggestions to help avoid this happening or to help you regain control when it does.
- Learn and use relaxation or mindfulness techniques, or go to a yoga class.
- Lie down or listen to relaxing music frequently. Or do something else that helps you to relax.
- Look ahead and eliminate predictable causes of stress before they happen. For example, keep enough supplies of food so that if you can’t get to the shops you have an emergency store. Visiting the doctor or going on an outing may create several sources of stress – try to eliminate as many causes as possible with early preparation.
- If you are having a bad day postpone a scheduled task or activity so you can relax.
- Make a list of the caregiving tasks you find the most difficult. Pick one of them, think about and discuss possible solutions with others – perhaps support group members. Gradually you will reduce the problems and the stress they cause.
- Don’t let pride get in the way. Ask for and accept help from available services, family and friends when you need it.
- Visualize how someone else might resolve some of the challenges. Removing yourself emotionally from the situation will allow you to think more clearly.
- Admit that you are not a perfect caregiver and forgive yourself. Few people are perfect, you can only do your best. This will enable you to let go and allow other people to help you carry the load.
Try using some of these suggestions and see if they work for you. The aim of this toolkit of strategies is to help you achieve a good balance between what you do for your loved one, looking after yourself and maintaining your mental health.
It is not easy but it is essential. By finding that balance you will find it easier to face the challenges of caring.
This article was written for Carewatch by Robin Dynes. Robin also wrote our Activity guides for people with dementia to help carers enrich the lives of those they support.
Robin has worked in the National Health Service, Social Services and Adult Education for over 30 years as a counsellor and trainer. His main role has been to develop innovative services to meet the needs of older people and others who are vulnerable