Parkinson’s disease is a terrible affliction that challenges both patient and caregiver. Parkinson’s is one of those slowly progressing, degenerative afflictions that takes a large toll on all people involved. In order to avoid certain difficulties and prepare for the journey ahead, here are a few tips for caregivers of loved ones with Parkinson’s disease.
As with all caregiving, honest communication is the cornerstone of effective and intuitive care. Without accessible and candid lines of communication, you cannot hope to understand your loved one’s daily situation. Many caregiving relationships feel the strain of unresolved feelings and buildups of bitterness. Do not allow resentment to fester and share your honest feelings with one another. This will only add psychological stress to an already physically-taxing situation.
Honest communication is not impossible, but it is hard-won. You must have a study relationship with your loved one in order to communicate such difficult emotions and realities with them. Be careful as a caregiver not to blame the person for their limitations and medical problems. This mischaracterization will only shut down the all-important avenues of communication. Begin working on your relationship with the person outside of the caregiving and illness so you have a better foundation when discussing problems related to the disease and treatment.
If you do not already have a therapist or psychologist, you should strongly consider investing the time to find one. You may not think you need one now, but wait another few weeks, months, or even years, and you will realize how much of a difference a therapist could’ve made in your caregiving journey. A therapist offers a non-judgmental place for you to process all feelings related to caregiving and other aspects of your life. Psychologists are trained professionals who work solely for your benefit. In times of distress or tension at home with your loved one, this connection with a therapist will help you feel support when you cannot find it anywhere else.
Caregiver support groups are the lifeblood of patience and sustainability in long-term healthcare situations. Seek out these support groups and find a common bond with other caregivers who need the same unity and strength you crave. Though support groups are a place for you to find solace and connection with others, it is also where you can support like-minded others. The beauty of the support group lies in the ability of group members to both share with and lean on each other. Reach out to your local hospitals and Parkinson’s organizations to find a support group near you.
Your level of self-care will alter your effectiveness as a caregiver. You cannot give what you do not have. Consider your soul as a water glass. If you consistently pour out of the goodness of your heart, you will deplete your reserves. Without the proper rejuvenating activities and solitude, you will burn out and become a much less effective and loving caregiver. So, fill up your water glass with self-care.
You may attach a whole host of positive or negative associations to the word “self-care.” But this is not a scheme or gag—self-care is part of what it means to have human limitations. Caregiving for your loved one cannot become your entire world. You must allow time for yourself both alone and with your friends. Don’t feel guilt or shame for taking a night off or spending a day out on the town. You need those precious hours of life outside your caregiving role to fully realize yourself as a whole person. Though caring for your loved one is core to your life, it is not the essence of your personality, hobbies, habits, dreams, and aspirations. You must entertain these parts of your identity, too. Otherwise, they will wither, and you may blame your loved one for losing your sense of self.
It is one thing to care for someone with Parkinson’s disease, but it is quite another to truly understand their predicament to the best of your abilities. Dig deep into the medical aspects of the disease as well as the symptomology. You should know what to expect at every stage of the journey and how to address each new or worsening symptom as it arises. You can also research the medications and trials available for the disease to see what medical options you and your loved one should consider.
Learning doesn’t just happen on a computer screen. Be sure to attend every doctor’s appointment and engage with the physicians, especially if your loved one has difficulty communicating on their own. Manage your loved one’s medical information and take notes about their condition each day. With a log of symptoms and daily experiences, you will more accurately understand their state each day and track the disease.
You likely have a laundry list of action items and tasks related to your loved one’s medical care—make this appointment, take that medicine, do this physical therapy exercise, file that insurance claim. It is overwhelming for your loved one to handle these tasks alone, so take charge and handle the logistics of their medical journey. Begin with a folder and journal to stay organized. Keep track of their medications and ensure they take the correct dosage. See to their appointments, routines, and activities so they needn’t worry about forgetting something critical.
Involve your loved one every step of the journey and help them remember their daily tasks. Parkinson’s disease does not directly affect their ability to keep track of tasks, but it does make daily life more difficult. Work together to manage your loved one’s medical care and treatment so they can focus on their health.
Use these tips for caregivers of loved ones with Parkinson’s disease as you journey down this long and arduous road. There will be plenty of occasions for joy and triumph, however, prepare yourself for the hard times and have backup help on hand. If you need senior care in Bellevue, WA, reach out to our team at Fedelta Home Care for more information today.