Caring for the carers
Parkinsons.Me strives to have a positive approach to living with Parkinson's, but we also need to be realistic. Being the carer of someone with a long term degenerative condition can be extremely challenging, frustrating, and emotionally exhausting.
It is really important that the needs of carers are considered as much as those of the person they are caring for, and this is where the wider family and local community can make such a difference. It is particularly important that the carer also has someone to talk to so that they can discuss their feelings and frustrations without feeling guilty or judged.
Adapting to life with Parkinson’s
From the time of diagnosis, you and the person you care for will probably experience a range of emotions, including sadness, fear of the future or anger. Communicating well with each other so that you can each express your feelings or concerns will help you both to manage them and adjust to changes over time as Parkinson’s progresses. Find out more about the emotional impact of Parkinson's on both the person themselves and you as a carer here.
Initially you may not need to provide much physical support. Many people with Parkinson’s remain independent for years. What your caring role involves will depend on how the condition affects the person you care for, the activities they do and what resources are available to help them.
One of the most important things you can do is to educate yourself and the person you care for about Parkinson’s. It is an unpredictable condition but being aware of symptoms, treatment options, available resources and the likely progression will mean that you can anticipate and better prepare for physical and emotional difficulties as they arise. Make sure that you know how to get the help you need when the time arises.
Encourage as much independence as possible, allowing the person extra time to do things if necessary. Remember too that symptoms tend to fluctuate from day to day, and even hour to hour, so be flexible about how much support you need to give.
Many carers do not like the term; they see their role as a natural extension of the relationship they have with someone important to them. It is therefore not surprising that a large number of carers are not identified as such and that what they do is often not fully appreciated. As a result, many carers do not access the benefits and support that may be available to them. Finding out about benefits and support you are entitled to will help you to manage these added responsibilities and maintain quality of life.
Managing your time
All too often carers feel a sense of having too many things to do in too little time and having no time for themselves. This can be a problem for many of us, but as a carer the problem may be more acute and you might feel guilty if you take something off the ‘to do’ list or allow yourself some ‘me time’. Please try not to - you owe it to yourself and your partner to look after your own well-being.
Looking at exactly what you do throughout the day can help identify how time and tasks can be managed well, and how you can allocate periods for yourself. One good way to do this is to take a sheet of paper and make a list, numbering one to 24, representing each hour of the day. Against each number, or hour, write exactly what you have done throughout the last day, including sleep or lying awake in bed. You can then review the list and identify tasks that perhaps could be done less frequently or that a friend or other family member can help with.
Over time you may find that the relationship you have with the person you care for changes. If that person is your partner, you may find roles reverse as you take on responsibilities your partner previously had. Try to make sure you spend quality time as a couple though. Book outings for you both to look forward to. The person you care for may be able to do small things to help you sometimes too. Gently rubbing your back or feet can bring a sense of closeness and affection to both of you while soothing aches and pains at the same time!
Many carers say that they feel socially isolated as they miss opportunities to go out with their friends or pursue pastimes they previously enjoyed. Although it might seem an effort if you are tired, it is important to maintain social contact with supportive friends and family as much as possible as they will be invaluable in helping you to cope. Seeing them or talking regularly on the phone will improve your sense of wellbeing and help you to forget about caring for a while. If your time is limited, you may find it helps to talk with others in a similar situation using online communities or support groups. Just as the person you care for has their own healthcare team, so you will need to reinforce or build your own support team.
With thanks to the European Parkinson's Disease Association for the use of this material (EPDA).
The following video was made by Amy Stevens, whose husband, adventurer Austin Stevens, was diagnosed with Parkinson's in 2016. Thanks to Amy for allowing us to share this video...