Parkinson’s Disease (PD) takes a toll on everyone involved. From the patient facing the realities of a newly-diagnosed, neurodegenerative disease to their family and friends, all are affected by the challenges imposed by this condition. Yet other than the patient themselves, much of the burden typically falls to a single family member – typically the patient’s spouse or significant other – or a close friend who find themselves as the main person providing care to the PD patient.

Caregivers don’t often like this title. Many of them experience their newly-assigned care duties as a natural evolution in their long-standing relationship with their relative, who is now becoming more dependent on them. While this expression of generosity and compassion is admirable, by not recognizing themselves as such, caregivers may miss out on important issues that, once identified, can help them take better care of their loved one – and of themselves.

Caring for someone with PD can place a significant burden on your time, mental health, and finances. By properly identifying your role as a caregiver you may better address these issues and access resources and benefits to help you through the challenges ahead.

Adapting to living with PD

The first step in your caregiving journey often begins with the diagnosis. As your loved one receives the news that they have PD, you will likely go through a time of intense emotions – such as sadness, fear of the future, or anger. This is natural. As you adapt to the new reality of supporting a person living with PD, it is important that you communicate with each other openly so that you may process your feelings together.
In the first months – even years – following your loved one’s diagnosis, you will not need to do much as a caregiver – at least not physically. It is likely that the person living with PD is still physically independent. Your main duty as a caregiver during this stage is in supporting your loved one as you both adapt to the realities of a degenerative movement disorder. In other words, you will be coming to terms with a condition that is certain to progress over time and to impose increasing difficulties.

It is therefore important that you focus on educating yourself and the person with PD about what may lie ahead. By learning about possible symptoms you will more easily identify issues that need to be addressed by your health care providers; and identifying resources in advance, such as financial aid or at-home care, will make accessing them easier when the time comes.

One particular area worth investing in is good communication with your loved one’s doctor and other health care providers. For example, you may need to help your family member with managing their medication, and this often seems like a daunting task at first. To complicate matters further, identifying side effects caused by these drugs may be tricky. Talk to your doctor, pharmacist, or Parkinson’s clinic nurse to get the help you need in understanding your loved one’s drug regimen and in learning what side effects to look out for.

As you progress through this stage, things may become difficult emotionally for both of you. As you encourage your family member to maintain as much independence as possible for as long as possible, try to keep a positive attitude and throw a little familiar humor into the mix. Remember that PD symptoms tend to fluctuate – one day they may walk about without any noticeable difficulty, and the next day they would struggle. Being patient and allowing your spouse extra time when needed will go a long way.

Managing your resources

You may want to be there for your loved one as their condition progresses – but you, too, have your limits. Your physical strength, emotional stamina, waking hours, even finances may all run out eventually if you are not careful. You may feel overwhelmed, or that you have too many things to do with barely any time for yourself – or you may find that guilt creeps up on you whenever you neglect a task or try to take some “me” time.

One way of managing time and energy better is to prepare a blank list with 24 items, representing the 24 hours in a day. For each item, indicate what you did during that hour in your day – including items such as sleep or even lying awake in bed. Once you have your activity log all laid out before you, you may start noticing that some activities may be grouped together to avoid unnecessary hassle. For example, if you live in a house with multiple levels, it makes sense to group tasks into “upstairs” and “downstairs” activities so that you don’t end up running up and down the stairs. Shopping trips may be combined with other outside activities such as going to a doctor’s appointment, also saving time and energy.

Going back to your title as a “caregiver”, you may want to start looking at your financial resources. Depending on where you live, you may be entitled to benefits, support, or financial aid as the caregiver of a person living with a degenerative disease. Such benefits may become invaluable as you struggle to juggle your everyday obligations caring for yourself and for your loved one.

Investing in relationships

Good relationships are important for helping you recharge. If the person you care for is your significant other, you may notice that your relationship changes over time. For example, if the person living with PD used to be the one taking care of the physical chores around the house or managed the household finances, you may find yourself taking up more of those duties as their condition progresses and gradually prevents them from keeping up with their old tasks. These changes can have a significant effect on any couple – not the least of which a couple coping with a debilitating illness. This is why making a deliberate effort to boost your relationship is so important. Have regular date nights, make special plans together, or simply spend quality time together at home to make sure you get more out of your relationship than you put into it.

Yet you may also feel that you need to reach out to others. Caring for someone with PD can make you feel isolated and removed from the outside world. Social contact with friends or other family members can be a welcome distraction from your everyday caretaking duties, and will also serve as emotional support when needed. If you struggle to make time to meet with friends, talking over the phone regularly or even staying in touch online can be beneficial.

Care for your loved one, and for yourself

It may be tempting to lose yourself as you care for a loved one in need. But if you over-exert yourself, physically or emotionally, you will not be able to take care of either of you. Recognizing your unique role, and the realities that come with it, is the first step in making sure that you maintain a healthy, balanced relationship with your loved one – and with yourself – as you both learn to cope with the challenges of PD.