Common Questions From Caregivers About Parkinson’s
Taking on the role of caregiver for anyone can be daunting, especially when it is someone you love. This is true, whether you chose the role or just had it thrust upon you. When the illness your loved one is dealing with is a prolonged, chronic disease like Parkinson’s, it can be even more overwhelming.
It is only natural to have a number of questions about what to expect, how to care best for your loved one, and how to cope with your own issues. Asking questions is an essential step in becoming the best caregiver you can be, though. Finding answers proactively can help you make better, more confident decisions. It can also help you advocate for your loved one, when necessary.
They say, “Knowledge is power!”, and getting answers to your questions is one step in the right direction of being more informed. Coming here to ParkinsonsDisease.net is an important step in the right direction. So is using other reputable resources, both online and in print.
This post will answer some common questions caregivers might have when it comes to caring for someone with Parkinson’s disease (PD for short).
What is PD, and what does it mean for me and my loved one?
PD is a chronic movement disorder, centered in the nervous system. It will get worse over time, although how much time that takes can vary greatly from person to person. In all likelihood, it will take years, often as many as 10 to 20 years.
The severity of the symptoms and how quickly or slowly they progress will depend on the person’s age at the time of diagnosis, his or her overall health status, and the treatment plan. Some people have only mild symptoms for many years. There is no cure for PD, but people do not die from PD.2
Common symptoms include:
- tremor at rest
- stiffness of the limbs
- difficulty walking
- impaired balance
- small handwriting
- stooped posture
- softness of voice
- problems swallowing
It can also affect things like sleep, smell and bowel habits and can trigger a drop in blood pressure upon standing up.
What this means for your loved one is that caring for themselves will likely become more and more difficult over time. What it means for you is that your caregiver role will likely become more and more demanding of your time, energy and emotions as you watch your loved one’s independence erode.
How will PD change our relationship with each other?
As soon as you take on the role of caregiver, things will begin to change between you and your loved one, even if you have always been the nurturing, caring one. Becoming a caregiver says you accept that your loved one needs help and that they are willing to accept that help from you. There can be a subtle shift in power, depending on your roles with each other in the past.
Plus, the fact is that beyond the physical changes your loved one is or will experience, there are mental and emotional changes as well. They might become apathetic, anxious, and/or depressed. There may also be a feeling of frustration when they rely on you because they are not able to do the things they used to do on their own. Because you are the caregiver, you are closest to the patient and you may bear the brunt of their negative feelings.
Acknowledge the changes in your relationship, but work on maintaining the positives as well. Let your person know that they matter to you, that you want to care for them, and that it does not feel like a duty, but instead it is love that keeps you going. Be patient with them. It is OK, though, to expect your loved one to let you know occasionally that they appreciate your efforts.
But never expect perfection from each other. Constant communication is key; both listening and talking honestly and patiently. When mistakes or blow ups happen, talk it out and then let it go. Move on.
Most of all, live in the present moment, and celebrate even the small joys that you have with each other.
What are the most important things I can do for my loved one with PD?
Of course, day to day help with the essentials of daily living is at the heart of the caregiver role. This could change over time but might include:
- Assistance with chores and errands, like transportation, cleaning, and shopping
- Helping with daily personal care and/or meal preparation
- Emotional support
But another important component of your caregiver role is to be an advocate. Attending your loved one’s doctor visits is a great place to start. You’ll be there to hear what the doctor finds and says and to remember it afterward. You can also ask questions that will help you and your loved one understand the treatment plan and what to expect in the future.
Finally, help your loved one live their best life. Make sure they have nutritious meals, get quality sleep, and stay active within their limits. Be an encourager and an enabler of healthy habits.
What are the best resources for a Parkinson’s disease caregiver?
Luckily, there are a number of great resources for caregivers of people with PD. You are on one of them if you’re reading this article! Parkinsonsdisease.net has a great knowledge base about PD (be sure to use the menu), as well as an active community of patients and caregivers here on the site, as well as on our Facebook page.
Some other great resources include:
- The Parkinson’s Foundation: Their caregiver’s guide is an excellent resource, but the website itself will be useful for both you and your loved one.
- American Parkinson Disease Association: They also offer a caregiver guide. Plus they have a symptom tracker app, a blog, and inspirational profiles of PD patients who are thriving in their lives.
- The Michael J. Fox Foundation for Parkinson’s Research: Not only does this site from one of the most well-known faces of YOPD, provide a wealth of information about the disease, they too offer a downloadable caregiver’s guide.
You might also find great resources in your local community. Talk with your doctor about possible local resources.
How do I cope with the stress of caregiving?
Caregiving can be tremendously rewarding. But there’s no denying that it can also be stressful at times. And if you don’t take steps to address and deal with this stress, then you won’t be a caregiver for long. So, it’s important to take care of you.
Here are a few things you can focus on that will help you cope with your caregiving role.
- Take care of your physical health. Keep those medical and dental appointments. Make sure you eat healthy meals and drink plenty of water to keep your body nourished. Take time for exercise. Not only is staying active good for your body, but it is also great for your mind and your soul. Get the best sleep you can – 7 to 8 hours a night if possible.
- Preserve your mental health. Accept help from others now and then. Ask for it if they do not offer. You need to take time off for you from caregiving. Give yourself some downtime, while letting others know they are needed too. Get yourself into a support group. There are many online and possibly locally as well. Support, especially from others who understand what you’re going through, can make a big difference, especially as things get harder.
- Do things that make you happy. Don’t let caregiving be your whole life. Take time to smile and laugh, to find joy in the little things of life and to do activities that make you happy. If you can do those things some of the time with your loved one, great. But it is perfectly all right to take some time off for yourself too. Go out for lunch or a movie with friends now and then. Don’t become a hermit.
Caregiving can be a tough job, and sometimes it might seem like a thankless one. But your loved one needs you, and that need will grow as the years pass. Truly caring for someone you love and helping them to live their best life can also be one of the most rewarding, purpose-driven things you could do. Embrace your role, but do not lose yourself in it.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
- Agingcare.com (2019). AgingCare - How Long Can Someone Live with Parkinson's Disease? [online] Available at: https://www.agingcare.com/articles/parkinsons-disease-how-long-can-a-person-live-after-diagnosis-123302.htm [Accessed 29 November 2019].