When a person is diagnosed with Parkinson’s disease it impacts everyone in his or her close circle – family, friends, spouse, children, and parents. Everyone must consider what the diagnosis means for the future and their interactions with their loved one. Many will take up caregiving responsibilities and that means they will need the support and strategies to ease the pressure and stress of caregiving.
Because Parkinson’s is a progressive disease, caregiving responsibilities increase over time as the disease becomes more debilitating. Caregivers can provide in-home care for a loved one for decades and that is why they must remain healthy and have strategies that help them to cope with the rigors of being a caregiver over the long term.
Here are four coping skills that Parkinson’s caregivers need:
1. Support networks.
As a caregiver, you will need several different types of support networks. You will need a strong clinical network of physicians, nurses and other specialists experienced in Parkinson’s disease. Not only will your loved one need skilled care, you will need a geriatric care manager that you can rely on for support and answers to your questions.
You will also need a network of supportive friends and family members who you can rely on. As a caregiver, you will go through a range of emotions as you watch your loved one cope with the worsening symptoms of Parkinson’s disease. Having someone to talk to will help relieve the emotional burden you have to bear. Find a support group in your area and know when and where they meet. You may not need or want to attend at the beginning, but eventually, it will be of great support to talk to people who know what you are going through.
2. Know your stress.
As a caregiver, it will be very important for you to recognize your own individual symptoms of stress. Know how your body responds to stress so that you can address it. Left to grow, stress can quickly result in caregiver burnout and that is something that you want to avoid. Burnout can make you physically ill and take you away from the caregiving duties that you take so seriously. If you know the signs that you are under high stress, you can take a break to address them Recognize what increases stress for you and try to change things in your day to reduce the causes. Caregiving by itself will cause high levels of stress but you want to avoid things that add to that. For example, if you are always late picking up your children and that is a high stressor, try carpooling with friends a fews days a week. If making dinner increases your stress, pre-make meals on the weekend and then freeze them, or treat yourself to take-out a couple nights a week.
3. Be kind to yourself.
Give yourself a portion of the kindness and patience you give the person in your care. Don’t set the bar of expectations for yourself so high that you can never reach it. You are doing the most important thing that anyone can do for a loved one – caring for them and giving them love and security every day. Let that be enough for you and give yourself messages of kindness and support.
Communication may change as Parkinson’s disease progresses. The disease can make it difficult for people to show facial expressions. It may slow their response to stimuli and they may make fewer gestures. As they become less responsive it may make it more difficult to communicate with them. However, you can cope with this if you slow your communications and sit directly in front of your loved one, asking him or her to explain feelings and thoughts.
Communicate how you are feeling as well. This is where support groups, friends, and family members enter the picture. Talk to them, tell them how you feel. Find a geriatric care manager you trust so you can be candid and brutally honest. You need to air your feelings in order to protect your emotional wellness.
Being a caregiver for a loved one with Parkinson’s disease is not easy. It has the potential to take a toll on you as well. If you keep these coping skills in mind it can help you to stay healthy mentally and physically and that will help you to remain a strong caregiver.