Parkinson’s Disease is a serious diagnosis that’s extremely difficult for both the patient and their loved ones. Parkinson’s Disease (PD) is a brain disorder that causes uncontrollable and unintentional movements such as body jerks, shaking, stiffness, and difficulty with balance and coordination. It is a serious illness that starts slowly, and worsens over time. Noticeable symptoms include speech impediments, sleep problems, memory difficulties, fatigue, depression, and tremors.
Parkinson’s is caused by the impairment of, or death of, nerve cells in the basal ganglia. The death of these nerve cells in that specific region of the brain hampers dopamine production. Consequently, the neurons produce less dopamine, resulting in movement issues often associated with Parkinson’s Disease.
Additionally, Parkinson’s patients lose the norepinephrine-producing nerve endings, which act as a messenger of the sympathetic nervous system in charge of numerous bodily functions, such as heart rate and blood pressure. This explains why some Parkinson’s patients have non-movement problems such as slow-moving digestion, hypertension, or sleeping problems. Since Parkinson’s Disease affects mobility and results in other symptoms, it can also adversely impact the patient’s mental health.
Doctors have yet to find out what exactly causes the death of nerve cells that result in Parkinson’s Disease. Moreover, more research is still being done and a cure for Parkinson’s Disease is yet to be found. Unfortunately, these preventive and curative options are unavailable. However, there are care and therapy options that can help ease the tremors and pain felt by patients who often require assistance.
Does Your Loved One Have Parkinson’s Disease?
If you have a loved one who struggles with Parkinson’s Disease, there are numerous challenges involved with being their primary caregiver. If you are not the primary caregiver but a different family member is, you’ll want to try to help out as much as possible.
More than the physical hardships of helping bathe them or putting on their clothing, it can be very heartbreaking to see your loved one suffer and deteriorate before your eyes. A once independent person could be rendered disabled or immobile by Parkinson’s Disease. As the caregiver, you also feel frustrated at the injustice of it all, because a Parkinson’s diagnosis changes your family dynamics and your individual relationship with them forever.
Understandably, this difficulty in caregiving is also amplified by your own concerns, such as work and other social commitments. You may feel tired from having to do mundane tasks or having to go out of your way to cater to their needs. That said, there are some ways for you to cope with stress that comes with caring for Parkinson’s patients.
Below are 7 ways that you can cope when you’re caring for a loved one with Parkinson’s Disease.
1. Study, research, and learn
As a caregiver, you must educate yourself and understand what Parkinson’s Disease is, and understand its symptoms. Having basic background knowledge will provide you with the foundational knowledge to provide the necessary care. A quick internet search will provide credible sites and scientific literature on PD.
The first step for learning to cope with caregiving roles is to know just exactly what you are in for. Not only will this help you be more compassionate and empathetic towards your loved one’s struggle, but it also comes in handy when it comes to balancing your schedule, making time for their appointments, taking note of their medications, and setting aside the needed time to do whatever they need help with.
2. Don’t neglect your own needs
As much as you feel obligated to provide care and assistance to your loved one, you also have to acknowledge your own needs. Caregiving can be very stressful, especially if you have no medical background, so it is vital to set limits and know what you are and are not capable of providing when it comes to care. Talk to your loved one about the kind of help that you are capable of providing. Prioritizing communication will prevent feelings of resentment and help you manage expectations.
For example, maybe you are tight on time and wish to help financially by paying for a nursing aide or home care worker. Alternatively, you could have the time and could help with weekly groceries and a few daily tasks. What is important is that you communicate your honest concerns so that you both know what to expect. Moreover, setting boundaries will help you ensure you do not spread yourself too thin. If you do spread yourself too thin, you’re neglecting your own needs, and your own mental health could suffer.
3. Be observant and attuned to their needs
Being observant is one of the key roles of a caregiver to address a Parkinson’s Disease patient’s needs. As the one who provides care, you have to extend this virtue to yourself. Be observant not just of your patient, but also of yourself. Bear in mind that as a caregiver, your patient can also sense it when you feel down and troubled. Hence, check in on yourself because your mental health matters.
Apart from looking after the health of your loved one, look after your welfare equally. The stress from caregiving can take a toll on you, so look for signs of mental and physical fatigue. If you feel burnt out, seek assistance immediately. Take note of any sudden changes in your mood, bodily functions, and mental faculties. Be careful to not over-exert yourself, and to watch for signs of extreme stress. Observation is also important when it comes to reinforcing your boundaries, and knowing when you have had too much and need rest.
4. Try to plan enjoyable activities together
The mental toll of providing care for a loved one with Parkinson’s Disease may be alleviated through a little movement or exercise, as they’ll be able to release endorphins or happy hormones. Developing a more positive attitude towards exercise will help ease pressure. You can opt to do things you love in your own time, or you can do a more simplified version together with your loved one.
Apart from dosing you with happy hormones such as endorphins, exercising with your loved one will also improve your relationship. Think of it as bonding time with each other and building memories. This will provide you with a sense of ease as you continue assisting your loved one throughout his or her medical journey.
Furthermore, studies indicate that Parkinson’s involves the loss of dopamine in the brain, and exercise is a good solution, because it promotes the formulation of more dopamine receptors and increases dopamine levels. If your loved one battling Parkinsons’ is sedentary, encourage them to start moving with you. You may even invite them for activities like walking, dancing, or yoga. Find a way to incorporate things that you enjoy into your care routine to make things feel less heavy.
5. Help them feel normal
Being diagnosed with Parkinson’s Disease, or any serious illness, can shake up the daily routines of just about anyone, as well as those tasked to care for them. Movement diseases can be especially disruptive to the daily order and routine of things, and it is easy for patients and caregivers to feel lost.
When talking to your loved one, try to divert the discussion away from what they are going through to bring a little normalcy back into your lives. Though providing hands-on duties like dressing or feeding your loved one may feel like work, think of how these tasks bring you closer together and strengthen your bond. Do something creative as you interact like sing songs, share old stories, tell jokes, and speak about your dreams.
It may be helpful to take them out of the house so that you both get to see the environment and enjoy the great outdoors. Research says that earthing or being close to nature can do wonders for the soul, help alleviate stress, promote good sleep, calm you down, and mitigate inflammation. In ensuring that they are given a little normalcy, you also bring back a bit of normalcy into your own life.
6. Join a support group
You’re not the only one who has a loved one battling Parkinson’s Disease, and it can be extremely helpful to get advice from others who are going through the same thing. With added care responsibilities because of PD, it may feel like you’re drowning with so many responsibilities on your plate. You may also feel scared when a loved one has such a serious illness. When you feel trapped or afraid, consider joining a support group. There are numerous groups, both online and offline, that offer free counseling and group discussion sessions to caregivers of patients with medical illnesses.
These platforms provide you with an avenue to express your feelings with people who genuinely understand. Plus, you will be reminded that you are not alone, as you will be surrounded by people going through the same experience. Finding a community that shares in the same struggle provides you with emotional support and eases your mental burdens. In turn, feeling lighter and more at peace will also positively affect the quality of care you provide for your loved one.
7. Seek professional assistance
Not everyone is cut out for caregiving when it comes to caring for a loved one with a debilitating illness such as Parkinson’s Disease. Forgive yourself for your shortcomings, and acknowledge that it’s normal to struggle with this. From the day that your beloved got diagnosed with Parkinson’s Disease, your life turned upside down. It’s normal to struggle with the diagnosis and feel emotionally off-kilter. If you find that you cannot cope with the radical changes in your routine, find that things have become particularly hard, and feel that you are too drained to continue providing care, do not hesitate to reach out to professionals.
Consider hiring a private caregiver to help relieve you of some of your stress, or schedule your loved one for occupational therapy a few days each week to grant you more time to yourself.
You could also get therapy in the form of weekly grief counseling sessions. It’s normal to be grieving when your loved one is diagnosed with such a serious illness, and it’s likely you need a professional counselor to talk to.
More importantly, you do not have to wait to feel drained to seek out help for yourself. If you begin to notice that things have become hard to bear, and if professional care is too expensive, consider dividing care roles with other concerned loved ones of the Parkinson’s patient. Banding together with family and friends will help lighten your load.
Parkinson’s Disease is a diagnosis that’s extremely difficult for both the patient and their loved ones. can easily make a patient feel alienated, unwanted, alone, scared, and it can make them feel like a burden. Their loved ones face many hardships as well. While caregiving may be a difficult undertaking, with the right coping tools and strategies, you will ease into this role and adapt to the changes.
If you’re concerned if yourself or your other family members are at risk for Parkinson’s Disease due to genetic history, you can take a CircleDNA test to find out genetic risk factors. DNA test results will reveal various health and disease risks based on your DNA.