Becca Irwin, LISW
One of the most common questions from family members of people diagnosed with Parkinson’s disease pertains to when and how to get help at home for caregiving support of a loved one. Often people diagnosed with Parkinson’s disease and their loved ones struggle with knowing when to add support at home for everyone, and there are many complex and unique concerns for each family regarding their support system and life at home. There is not a “one size fits all” model for support at home, but there are some general benefits to adding support sooner than later. If you or your loved one are starting to wonder when to add support, it may be time to begin to plan to add support.
There are benefits and challenges to adding additional help at home for you and your loved ones. Some reasons to provide additional support sooner than you feel you may need it, although not exhaustive, include increased quality of life for family members, increased independence of the person diagnosed with Parkinson’s disease and their loved ones, and establishing a relationship with a support network for future needs.
Support can come in many different forms, from family, friends, spiritual communities, county services from the county that you reside, or private agencies that provide in home support. Agencies that provide support typically provide either skilled or non-skilled support in your home. Skilled care refers to Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST), skilled nursing, and social workers. This type of care is frequently covered by your health insurance provider as long as it is ordered by a physician and your loved one is considered “home bound” meaning they are not driving, and only leaving the home when necessary for medical appointments or other necessary trips.
However, the care that most people really need at home, is an extra pair of hands, to help with social support, errands, light housework and provide something just in case it’s needed while a family member is away. This is frequently considered non-skilled care and is not always covered by insurance. Although some insurance providers do cover some non-skilled care at home, so it is always a good to check with your insurance provider to learn about what services may be covered under your existing plan.
Sometimes cultural considerations, feelings of guilt for not being able to “do it all” seamlessly, in the worries of imposing on family and friends, and financial difficulty in paying for caregiving support are real barriers to obtaining help. Sometimes it helps to imagine a close friend or family member in our own situations and think about how we may want to help and support them if they were managing a lot and needed a break. Allowing our friends, family, or spiritual communities the opportunity to support us is a gift to them as it brings deep feelings of contribution and provides a practical way for them to help and provide support.
Quality of Life
As life changes and shifts for people diagnosed with Parkinson’s disease and their loved ones, sometimes subtly over time, sometimes more quickly than anticipated, relationships and scheduling demands also change subtly or quickly. As the demands on everyone change, with increased medical appointments, fitness routines, dietary changes, and new medication routines to manage and adapt to, other areas of life need to change and shift along side these changes. With those changes, often the most important needs of everyone in the family get pushed to the side to make room. Social events, personal time, routine medical appointments like dental visits, optical care, and physicals get delayed or canceled.
One benefit of adding additional support at home is to ensure that family members have adequate time to take care of their own social, physical, and mental wellbeing. This additional support for family members to be able to plan consistent time away to take care of their own needs, allows the person diagnosed with Parkinson’s disease and their family members time to manage all of the changing demands on each individual and their family as a whole.
Increased Independence
It may seem counterintuitive, but the process of bringing in more support at home in the form of additional caregivers, family, and friends may increase a sense of independence for people diagnosed with Parkinson’s disease. When additional support is available at home, it can sometimes be easier to get to appointments, leave the home, accomplish tasks around the house, and feel a sense of accomplishment without having to rely solely on their main caregiver.
This can also improve the relationship between family members and the person with Parkinson’s disease by allowing them to rely less on each other in a caregiver/patient role and more as a couple or family member maintaining healthy relationships, intimacy and overall reducing stress on the household.
When family members can have time away from their caregiving role, it reduces stress and helps everyone manage changes overall. Caregiver stress is a real concern for families impacted by any long-term condition, by providing help and support early, and allow consistent and meaningful time for both the person with Parkinson’s disease and their family members, symptoms of caregiver stress are reduced.
For more information on symptoms and signs of caregiver stress, you may find it helpful to read more here at the Parkinson’s Foundation on caregiver stress.
Establishing a Relationship with a Support Network
Many families wait until they can’t manage one more day without help at home to add support at home. Planning can help to avoid situations where family members or people with Parkinson’s disease are isolated and are experiencing unhealthy levels of stress at home. These levels of stress over time, can be physically and mentally exhausting on everyone. Managing medications, physical care, and emotions are more difficult when caregivers and people with Parkinson’s disease are tired and need a break.
If you plan for when you will need additional support at home in advance, you can work to reduce stress, isolation, and physical injuries for the person with Parkinson’s disease and their family members. Most importantly, ensuring your loved ones get the type of care and support from you that you want them to have.
If you establish a support network early on, you will be able to use and rely on support when you need it. It takes time to find the right fit, you may start with one support person, end up with an agency or another family member than when you started. Allowing the entire family to become used to having consistent people interact with your family allows increased comfort with outside caregivers in the future in the event that there may be cognitive changes, that may make it more difficult to introduce changes in routine. If additional support is introduced early, gradual changes can be adjusted to over time, consistent support can be provided to the entire family and slowly built upon over time.
Resources for in home support
Many families receive support at home through family members, friends, neighbors, or their spiritual communities. However sometimes those supports are not practical or available. Sometimes the support you need may be hard to find and pay for. Starting the process sooner than later can set your family up for the best possible support system for your specific and circumstances.
If your loved one is over the age of 60, (65 in some counties) it may be helpful to see if your local Council on Aging office or Area Agency on Aging office provides services in home at a reduced rate.
Council on Aging of Southwest Ohio 513-721-1025
Council on Aging can also provide listings of private agencies that can provide support at home for a fee, if additional information is needed, please contact your local county Council on Aging or Area Agency on Aging office. As always, you may want to connect with your insurance provider to see what they will cover and how to connect with those resources.
Although you may encounter challenges to adding additional help at home for you and your loved ones, planning early, sooner than you feel you may need it, will improve quality of life, increased independence, and increasing your support network. Bringing these conversations and questions up with your neurologist, primary care provider, nursing or social work staff can help to connect you with available resources and provide the best care support to you and your support network or begin to develop a support network.