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Decades and Beyond of Living with Parkinson’ s
Over the long term, caring for your loved one might transition into a more intensive partnership, one that may be more hands-on and require more time. Care partnering may feel more one-sided, requiring more of you than it did in earlier years.
Navigating Increased Care Needs
As Parkinson’ s moves forward, symptoms gradually increase, and new symptoms can develop. These could include walking and balance problems; falls or near falls; memory, thinking or behavior changes; or seeing things that aren’ t there( hallucinations). Not everyone experiences all of these symptoms, and the amount of help needed varies as well. Certain activities might require assistance from start to finish, while others might require help for only a few steps of the process.
Care partnering tasks could include:
+ Helping your loved one with daily activities.
+ Putting pills into pill boxes for each day of the week and reminding your loved one to take them or handing them out.
+ Starting under-the-skin infusion medications each day or making sure deep brain stimulation batteries are charged when needed.
+ Making sure canes or walkers are accessible and reminding your loved one to use them.
+ Joining physical or speech therapy appointments and helping with exercises between appointments.
It can feel overwhelming and lonely, especially when relationships with your loved one, family and friends change. Turn to Shifting Roles, Responsibilities and Relationships for more.
That’ s when it’ s time to ask for help from family or friends, professional or paid caregivers or community services. Remember: Asking for help is a sign of strength, not a weakness. For tips on making these requests, turn to Pillar 2: Ask for What You Need.
Considering Care outside the Home
Depending on symptoms and needs during later years, some care partners and families may consider whether their loved one might receive the safest, fullest care outside of the home, in an assisted living facility or a nursing care home. This can be tough to think about and challenging to navigate.
While never easy, making decisions about this kind of care may be somewhat easier when you discuss the possibility early and often. It’ s important to understand everyone’ s thoughts, feelings and wishes. Your loved one’ s doctor, social worker and other providers can help facilitate these discussions and decisions. Turn to How Can We Plan for the Future? for more.
Supporting Yourself
During these years, care partners typically take on more and more. But there’ s only so much one person can do. Many primary care partners provide most of their loved one’ s care while also running the household, leaving little or no time for yourself or your health.
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