As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.
There is no doubt that caring for a Parkinson’s person takes an entire village…
The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.
Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.
So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.
Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.
It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.
The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.
- Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
- Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
- Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
- Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith. Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
- Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.
defeatparkinsons 
Such sage advise Maria – thank you! I think a lot of care-givers (like me) fall into the role rather haphazardly. As it’s such a ‘busy’ disease, there’s really no time for orderly reflection. Of course, if I had known what was to come, I’d be a lot less chaotic, but there it is!
Thank you Lisa for sharing your experience with us. May God continue to give you courage for the road ahead.
And to you, brave and beautiful Lady!