From the time of diagnosis, you and the person you care for will probably experience a range of emotions, such as, 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.
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.
Maintaining a positive attitude and a sense of humour will undoubtedly help you both to cope. 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.
It is important to build a good relationship with your healthcare team so that you feel comfortable asking questions or seeking help. Parkinson’s medications can seem complicated at times but taking the right medicines at the correct times is important in managing Parkinson’s well. Ask your doctor or pharmacist to help you understand how best to manage medications and what side effects they may have. Writing down the medication regime will help you to plan activities around when medication is working well and symptoms are controlled. Keeping a medication diary will also help you and your doctor understand how well symptoms are being managed and any adjustments that should be made.
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’.
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. You may also be able to group tasks together to save yourself some time, for example doing all the upstairs tasks together to save you running up and down the stairs unnecessarily, or combining shopping trips with appointments or other activities.
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.
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