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Caring for someone with Parkinson's disease

Parkinson's disease is a chronic, progressive brain and nerve disease, causing people to lose the ability to control their body movements.

A person with Parkinson's disease is likely to need considerable help and support from their family to act as carers. Here are some tips for caring for a person with Parkinson's disease:

Tips to help them (and you) cope

Do you realise how much you do?

  • You help maintain the quality of life for your loved one with Parkinson's disease.
  • You educate yourself about symptoms, treatments and the progression of the disease.
  • You keep track of appointments with the doctor, medication schedules and exercise.
  • You offer the love and support necessary to meet the challenges of Parkinson’s disease.

You are a carer. While many people retain their independence after being diagnosed with Parkinson's disease, some may need more help coping with their illness. That is where you come in. The role you have taken on is not an easy one. However the following tips offer some guidance on how to help you better help your loved one.

  • Take time for yourself. Make sure that you have time to relax. If necessary, enlist the help of other family members, make good use of your Parkinson’s disease specialist nurse, social services and other agencies that are there to help. If you can afford to and you would like more assistance than you are receiving, you may consider paying someone to help.
  • Learn as much as you can about your loved one's disease. In this way you will know how you can help and you'll also understand what changes to expect in your loved one's behaviour or symptoms.
  • Help your loved one participate in activities. Maintain the intricate balance between helping your loved one accomplish a task and actually letting him or her do the task by him or herself. Allow him or her the time needed to complete daily activities on his or her own such as dressing.
  • Consult your loved one about his or her family affairs. Although it's not easy to discuss these topics, you should be informed of your loved one's wishes regarding a living will, durable power of attorney and do-not-resuscitate (DNR) order.
  • Set realistic goals for yourself and your loved one. Do not attempt to do everything. By setting attainable goals you are setting everyone up for success, rather than disappointment.
  • Do not put your life on hold. Continue to meet with friends, participate in hobbies or groups and maintain as normal a life as possible. You will not only feel more energised, you will be less likely to feel resentful in the future.
  • Have someone you can talk to. You are there for your loved one, to listen and to offer support, but you also need a support person. Talk openly and honestly with a close friend or family member. If this is not possible, join a support group. Understanding that you are not alone and that someone else is in a similar situation helps you to feel secure. Parkinson’s UK, the main UK charity for Parkinson’s, has local support groups all over the UK, so there should be one near you. Both you and your loved one can benefit from the meetings, the problems shared, the social element and the expertise available.

 

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