Building a care plan to assist you for caring for your loved one with Parkinson’s can help to reduce anxiety and stress. For many of us, we like to have a roadmap and make sure that we are checking off all the boxes when it comes to planning for the future. When it comes to building your care plan for how you are going to help manage Parkinson’s disease with your loved one, you may wonder how to go about prioritizing and categorizing your needs. How can you provide your loved one with the best care possible?
One thing to remember is to always include your loved one in your plans - seek their input and develop the care plan together. You can then work together to identify your concerns, and together, you can then discuss how to prioritize what needs to be done. This helps you to place your needs and concerns in priority order. Below are some tips for staying organized while building your care plan.
Journaling and Task Lists
Keeping a journal or binder with a checklist of what items need to be done can help you to keep organized, but also take each item or task one at a time. From there, you can devise a step-by-step plan - not biting off more than you can chew. Remember, most things are not emergencies. While important and it should get done - no one can do it all in one week or one day. It takes months. Pace yourself. Then, you can implement the steps with help from others as needed - checking off the list and ensuring you have everything in place so that when you do need it, the plan is there to follow.
Plans for Scheduling
One of the most important tasks of a care partner is being able to stay organized. Just like building a care plan, applying those tips to daily tasks can make accomplishments more achievable. By trying to stick to a daily routine, your loved one will usually function better if he or she knows what is going to happen each day.
We all plan differently. Some of us like to use our phones and aps to keep organized. For others, a good old-fashioned journal and appointment calendar better fits our needs. Use what you enjoy and works best for you for recording appointments, activities, and other items. Even keeping a running shopping list that can be easily updated week to week can make life easier rather than starting from scratch.
Perhaps you might even want to designate an area of the house as your time to plan, keeping everything you need in one place. And when you are scheduling, don't forget to include time for you to rest into your daily routine. Look for ways to make your life easier. Perhaps having deliveries of groceries, medications, and household items can help you streamline some of your tasks for minimal extra fees.
Keeping Records
Besides keeping up with the appointments, medication schedules and reminders, keeping a journal, or having a binder that includes loose leaf paper for notes can help you to stay organized with additional important details. Use these tips when putting together your binders, journals, or appointment reminders.
Keep important names and phone numbers on an updated contact list. Post this in a visible area.
Keep paper and pens next to the phone to record messages or numbers
Write down the daily routine so it can be done by others if you are unable
Create and maintain a list of your loved one's medications with dosage, timing, and frequency
Keep accurate records of financial and insurance information
Review your loved one's advance healthcare directive to ensure the named healthcare agent and wishes are current
Make sure a trusted family member or friend knows the location of important information
If you find that your loved one is having some new symptoms and you don't know what could be causing them, journaling them along with activities, meals and exercise, or rest during the day can help you to notice patterns that can be addressed and discussed with the doctor.
Back-up Plans
No matter how much we plan and have everything perfectly in place, life happens. Do you have back-up plans considered for the "what if" scenarios. Such as, what if you become ill, who has your back? Setting up a plan and discussing it with those who can provide substitute services in your absence is important. To put together a back-up plan, you might want to:
Consult a social worker or geriatric case manager to learn about programs, services, and care options appropriate for both current and future needs
Talk with members of your support group to learn about possible options
Make sure you understand benefits and covered services included in your current insurance plan, including any long-term care policies
Investigate options for home care, adult day services, respite stays, assisted living or long-term care in your area. Keep this information available as needed
Tour care facilities in advance of need to prevent last minute decisions. Your preferred facility may have a waiting list.
Carving out time to keep organized is challenging. We may feel like it is a waste of energy. But in the end, documenting the most critical details is very important for your loved one’s care.
Sources:
Parkinson's Foundation. Page 17. How to categorize and prioritize needs - Building Your Plan. Chapter One. Early in the Journey. Your Care Partner identify. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."
Parkinson's Foundation. Page 134. Plans and Scheduling. Chapter 6. Advanced Planning. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet.".