Carers
Caring for someone who has Parkinson’s disease is a difficult, yet very important role. It can be a very long and stressful journey, and, just as the disease can affect individuals differently, so too can the relationship between carer and dependant. Carers are usually spouses or partners, parents, brothers or sisters, friends, co-workers or children. For a young person with Parkinson’s, it is most likely to be a family member or partner.Your ability to maintain a good relationship with your dependant relies on many factors:
• Your relationship with this person before their onset;
• Your own lifestyle prior to this;
• Your own health care needs; and
• The level of support that is available to you from others.In order to be as successful and supportive carer, it is important to understand some of the special difficulties associated with PD, and to allow time for the PwP to do it themselves. There will be occasions when your help is required and those instances when it is not; it will help to learn the differences between the two. The most important this that will make you a good carer is to be honest in your relationship.Preserving the carer
Do not worry if you feel frustrated or depressed – many carers do, and a lot of this stems from feeling like you cannot do enough for them. Remember that as a carer you need emotional support, and time to look after yourself as well. Know what additional support there is available for you both. Talk to health professionals and seek further resources and information. Tips for better caring
• Remember that symptoms vary from hour to hour. This cannot be changed. Make flexible arrangements when planning your day.
• Patience. It can take a long time for a PwP to do anything. Allow them that time.
• Good communication is important, but speech can be affected. Ask your PwP to speak slowly, or ask questions that can be answered with yes or no. Do not ask more than one question at once.
• Let them finish! Do not anticipate what they are going to say. It will only frustrate them further.
• Offer an arm to lean on or hand to hold for support when walking. Do not direct them where they need to go.
• Encourage. When walking, encourage them to pick up their feet, or to continue if they are doing well on a frustrating task.Remember, above all, care giving is an evolving journey where we are taught to cope with the challenges in the fabric of our lives.Families and Friends
A diagnosis of Parkinson’s can be difficult to cope with in any circumstance, but when there are young children and loved ones to consider, there are other issues too. What do you say to them? And how will they react?• Be open and honest. Tell them soon after the diagnosis, over several occasions if necessary.
• When dealing with children, tell them as much as you think they would want to know, such as symptoms, medication you will be taking, and make it simple and appropriate for their age.
• Meeting other families in a similar situation can often be quite reassuring for family members. Discuss this option with your family.
• Do not assume anything. Just because you know Parkinson’s isn’t life threatening, doesn’t mean your family will. Continuously reassure them of this.
• Remind them that although you may not be able to do everything you used to you still love them the same.
