Caring for a Loved One With Parkinson's

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.

With the right resources and preparation, you and your loved one can face the challenges. Here are five tips to guide you on your care-providing journey.

Gain Knowledge

As Parkinson's slowly takes control over your loved one's abilities, you may develop uncomfortable feelings like worry and frustration. Education is one way you can overcome this.

Parkinson's is a very complex disease, so expecting yourself to master all of its medical nuances is unrealistic. Instead, start with the basics. This includes what symptoms Parkinson's causes and what medications are used, including their common side effects.

In the end, learning when to step in and help your loved one (and when to step back) will be a constant challenge. The more you know about the disease, the easier this becomes.

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. This requires ongoing patience, as you will not be able to reliably predict what happen. 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 that 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.

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.

Observe Symptoms

Parkinson's disease is progressive, with the symptoms (including movement abilities and mood) changing over time. Closely observing your loved one's unique symptoms, abilities, emotions, and responses to treatment regimens can help you determine how involved you need to be in their care.

Your vigilance is needed, as your loved one may be unaware of (or in denial about) new levels of impairment. If you notice something, it can be useful to ask others if they see a change, which can verify your observations.

Bring any changes you notice to the attention of the healthcare team. Your loved one may resist this, but it's essential for maintaining a safe and supportive environment (such as preventing falls) and ensuring necessary treatment and therapy.

Face Physical Challenges

While your loved one's limitations may be minor at first, they may need more and more physical care as Parkinson's disease progresses. This can include assisting in bathing, toileting, transfers from bed to chair or wheelchair, and more. As well, you may need to cue and encourage your loved one to perform tasks within their limitations.

At each step, ensure you are getting training from a physical therapist or occupational therapist so you can provide care correctly, lessening the risk of injuring yourself or your loved one.

Be frank about your own limitations so the healthcare team can recommend assistive devices and equipment such as lifts. Often, there are modifications that can be made to your home environment that can make it easier for everyone. You may need to have another person assist with some of the physical needs, whether a trained friend, family member, or a home health aid.

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 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. Loss of appetite, sleep issues, feelings of hopelessness, and decreased energy can also be symptoms of depression.

Be Kind to Yourself

Although you may feel programmed to put the needs of your loved one first, your own must also be a priority both for your own health and wellness and so that you can be the best caregiver you can be.

  • See your own primary care physician for regular check-ups and preventive care screening tests (for example, a colonoscopy or mammogram).
  • Exercise 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.)
  • Eat a well-balanced diet rich in fruits and vegetables.
  • Consider a mind-body therapy such as mindfulness meditation.
  • Engage in a leisure activity or hobby daily. Whether it's painting, reading, or a morning outing to grab a coffee, let your mind be at ease for a couple of hours every day.
  • Ask for help from others—and 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.

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 healthcare 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's 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 constantly evolve 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 to incorporate self-care and self-compassion into your daily routine.

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Article Sources

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