We have a lot of experience and expertise in caring for people afflicted with Parkinson’s. This is based on accumulated knowledge of caring in home for 574 Parkinson’s patients across the past 16 years and tips from about 50 caregivers with decades of hands-on experience. Call us or contact us via chat to discuss more of your personal situation.
Caring for someone with Parkinson’s is not easy – it requires a lot of attention to detail, it requires patience, an in depth understanding of Parkinson’s symptoms, recognition of the importance of medication timing and the ability to provide support on an ongoing and consistent basis. When you care for someone with advanced Parkinson’s, you must live life one day at a time – being organized and planning for many potential outcomes may decrease future stress for them and for you.
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.
Checklist of care – Each aspects of the care checklist for a person with Parkinson’s has to be personalized and planned for. This checklist has to be executed comprehensively every single day by a combination of the person themselves, the family members and professional caregivers. Coordination across all of these activities for all concerned is critical. Given the progressive and unpredictable nature of the disease, this checklist should be reviewed every month.
- 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.
- Bathroom –
- Overall: Most falls happen in bathrooms (surfaces are hard, colors start blending in, space is small and cramped). Vision changes in Parkinson’s can make it difficult to distinguish objects. Grab bars should be in contrasting color to the wall color and overall décor.
- Toileting: Use of elevated bathroom seats, moist wipes, wheelchairs, elevated sinks and other accessories is to be carefully studied to ensure safety. Tape an X on the floor can be useful to ensure safety during transfers.
- Bathing: If possible, a walk in shower with grab bars and hand nozzles and a shower chair with backrest work best for safety. If a walk in shower is not possible, consider a tub bench.
- Medication and Tracking –
- Organize all medical information (prescription, specific diagnosis/sub-diagnosis, doctor contact info) very well.
- Track medications very carefully. On time, every time is a crucial concept in Parkinson’s medication management. Set reminders for when they should be taken, and make sure that medicines prescribed for other reasons do not interact with the Parkinson’s drugs.
- 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.
- Activities at home – 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.
- Exercise – Helps preserve mobility, improve circulation. Encourage several, short sessions over the day that have been designed with us, or your PT/OT. Standing or walking where possible is important to maintain leg strength and healthy bones.
- Deep breathing and speech practice are equally critical
- Travel and transportation – 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.
- Making sure your home and car are accessible for transport – for example outside staircase should have sturdy railings. Or if possible, invest in a ramp instead of stairs.
- Plan for travel during off-peak hours, take doctor appointments at times when Meds are working well and clinics are not busy, and plan for all aspects of meds, food, water, temperature before you start.
- Rest and sleep – 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.
- Bedding – Choice of different rooms or twin beds may need to be considered as may be the need for a hospital grade bed with a call button or alert system. Use low height beds, satin based fabric (with less friction), light comforters, no top sheet and a firm mattress for optimal results.
- Sleep – having loved ones and professional caregivers plan for full day coverage including night time shifts is very critical. And ensuring restful sleep for both outside the bedroom for the person with Parkinson’s is absolutely important.