Tips: A few tips from our expert caregivers who have cared for hundreds of people with Parkinson’s:
Learn to take the person’s focus off from Parkinson’s – A condition like Parkinson’s dominates your life entirely – getting the person to focus on anything other than Parkinson’s is extremely critical. Parkinson’s is there – it is going to be there. Help them to forget about it for a bit and do things that they really enjoy. Let them live their life and be happy.
Keep in mind that even basic things will take time. You can’t hurry things. For example, it may take someone 5 mins to shower. But a person with Parkinson’s will typically end up needing support to get through the shower process and will take 1-2 hours for the same.
Celebrate – frequently – In any average day, there will be 5-10% of brilliant moments and happy moments where the underlying person you know will shine through. Take the time to celebrate this, even if it happens at an inconvenient time for your schedule as a family members. This 5% will dictate how the rest of the 95% will go.
Don’t make it about your needs as a spouse, son, daughter, daughter in law. It is about them – not you. All of us in a family get effected in some form when a person is not well. With Parkinson’s and it debilitating nature, don’t let your needs as a family member dictate what you make your loved ones do or not do.
Changes around the house – Changes in movement, balance, vision or thinking will drive changes around the bathroom, bedroom, kitchen and living areas. Home safety across flooring, lighting and furniture arrangements needs to be examined. Stairways and communication systems especially bedside and next to favourite sofa can be used to make the home safer. Changes may be necessary for both present and future needs
Plans and Scheduling – Stay organized and make a routine so that the actions of the person with Parkinson’s can become comfortable habits rather than a daily challenge. Ensure everyday to spend quality time as a family member. Reminisce and show them pictures to help spark or preserve memories.
Movement and falls – help the person with Parkinson’s sit down and stand up safely, including tips on cuing and the best furniture options. Review major changes to mobility – freezing; short, shuffling steps; instability and falls, and their impact on movement & safety
Dressing – Assemble all necessary clothing items before beginning to dress. Offer choice (red sweater or blue sweater?) and encourage participation in physical movement. Allow the person with Parkinson’s to provide as much assistance as possible. Ensure adequate time for dressing. Stress can make Parkinson’s symptoms worse,
Mealtime and swallowing – Meal set-up and pre-agree, pre-plan foods that are easy to chew and swallow. Give calorie dense foods (like gravy, whole milk, butter). Buy high calorie (NOT high protein) supplements. Combat dehydration, weight loss and problems swallowing medications.
Thinking and behaviour changes – Changes in thinking and memory can be frustrating and frightening for both the person with Parkinson’s and the family. It is important to remember it is the disease talking, not your loved one. Contact us for strategies to help you cope with your loved one’s confusion and memory problems, and addresses how to respond to behaviour changes that can occur as a result of hallucinations, delusions and dementia.
Given limited mobility and loss of memory, there may be less interest in activities of leisure and socialization. It is important to customize and pursue these while respecting the constraints of limited mobility, stress, cognition.
Traveling can be a cumbersome process with advanced-stage Parkinson’s, but these outings are sometimes needed, and can even be beneficial to your loved one’s wellbeing.
Parkinson’s creates many challenges to getting a good night’s sleep, both for the person with PD and the caregiver – this can be due to limited mobility, effect of Parkinson’s meds causing bad dreams or hallucinations, and frequent night time visits to the bathroom due to limited bladder control.