Caring for a Loved One With Parkinson's

5 Tips to Optimize You and Your Loved One's Comfort and Quality of Life

Couple hugging on park bench
Rob and Julia Campbell/Stocksy United

As a caregiver or care partner to a loved one with Parkinson's disease, it is common to feel powerless, vulnerable, or even frightened at times by the disease.

This is normal, as Parkinson's disease causes a broad array of symptoms that affects all aspects of a person's life, including how they move, think, interact, sleep, and express emotion.

The good news is that you and your loved one can live well with Parkinson's—it will be challenging at times, but a happy life is attainable.

Here are five tips to guide you on your care-providing journey.

Tip #1: Gain Knowledge

As Parkinson's slowly takes control over your loved one's abilities, you may develop uncomfortable feelings like fear, vulnerability, and frustration. But one way in which you can overcome those feelings of powerlessness is through education.

That being said, Parkinson's is a very complex disease, so expecting yourself to master all its medical nuances is unrealistic. Instead, start with the basics, an overview of Parkinson's disease.

This includes what symptoms Parkinson's causes, and what medications are used, including their common side effects.

In addition to educating yourself about Parkinson's disease, take the time to really understand and observe your loved one's unique symptoms, abilities, worries, and their responses to treatment regimens. This way you can best determine how involved you need to be, and which responsibilities you need to take over versus which ones your loved one can still master.

In the end, learning when to step in and help your loved one and when to step back will be a constant challenge–but it is doable.

Tip #2: Find a Listening Ear

Finding a person or group of people to listen to you is extremely important as you care for your loved one. You need to release emotions (both good and bad) so that they do not build up inside.

Consider reaching out to a support group of caregivers and/or loved ones of those with Parkinson's. If you prefer a more private interaction, delegate a daily phone call with a good friend or family member to rehash the day's challenges.

Anxiety and depression are also common in people caring for those with Parkinson's disease. Be sure to talk with your doctor if you are feeling sad almost every day, and/or if your anxiety is overwhelming.

Watch out for these other symptoms of depression like:

  • loss of appetite (or less commonly, eating more)
  • sleep problems (most commonly insomnia)
  • a loss of interest in activities you once enjoyed
  • feelings of guilt or hopelessness
  • decreased energy

Tip #3: Be Kind to Yourself

You deserve to be healthy and therefore, caring for your own physical and psychological needs to be a priority. Ways to care for your needs include:

  • Seeing your own primary care physician for regular check-ups and preventive care screening tests (for example, a colonoscopy or mammogram).
  • Exercising regularly, even if it means a 30-minute brisk walk every day. Exercise keeps you healthy and can help ease your worries and promote restful sleep. (Also, fresh air or the friendly smiles of others in a workout class can do wonders for your soul.)
  • Eating a well-balanced diet, rich in fruits and vegetables.
  • Consider a mind-body therapy (for example, mindfulness meditation).
  • Engage in a leisure activity or hobby daily. Whether its painting, reading, or a morning outing to grab a coffee, let your mind be at ease for a couple hours every day.
  • Asking for help from others—in this instance, be specific. For example, if a family member or friend offers to assist, write a detailed email explaining what it is that would be most helpful, like going to the grocery store once a week. For physical tasks, like bathing, you may need to hire help or delegate to stronger family members.

    Tip #4: Be Adaptable

    The thing about Parkinson's disease is that symptoms can fluctuate from day to day (and even within a day) and new symptoms can pop out of nowhere. While it is a good idea to maintain a daily routine and schedule, be cognizant that at any time, your whole day's plans may change—and this is OK.

    That being said, if you are going to be consistent and regimented about one thing, it will be your loved one's medication schedule. Taking medication at the right time is key to avoiding Parkinson's symptoms. Scheduling and remaining consistent with rehabilitation treatments like speech, physical, and occupational therapy appointments are also critical to managing symptoms and preventing hospital visits.

    With that, remain flexible about the less important things like being late to a social gathering—if it ends up taking hours to get out of the house, so be it.

    Tip #5: Plan Ahead

    In addition to the emotional and physical strain of caring for a loved one with Parkinson's, there is a financial strain for many. Managing health care bills and the economic constraints imposed on you from lost wages can be extremely stressful. There can be little "give" for social and leisure activities, which is important for both you and your loved one.

    The good news is that for most people with Parkinson's, the disease is slow in its progression, which gives you time to plan and prepare for the future. A few tips on optimizing your financial goals include seeing a financial planner, revisiting your budget every couple months, and talking with your neurologist and/or the National Parkinson Foundation about assistance programs.

    A Word From Verywell

    Whether you are the partner, friend, or child of a person with Parkinson's, know that your relationship will be constantly evolving, as new needs arise and your involvement and responsibilities change.

    Try to embrace your relationship and view your care-providing journey with a positive mindset. Remember as well, incorporate self-care and self-compassion into your daily routine.

    Sources:

    Bhimani R. Understanding the burden on caregivers of people with Parkinson's: A scoping review of the literature. Rehabil Res Pract. 2014;2014:718527.

    National Parkinson Foundation. Caregiving.

    Parkinson's Disease Foundation. Coping Skills for Parkinson's Care Partners.

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