Regardless of where your loved one is on their Parkinson’s disease (PD) journey, you are the only one who can define “caregiving.” Especially following a new diagnosis, you might not feel like you are actually “giving” care. Similarly, your loved one might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.
With resources created for care partners like our Caring and Coping educational book and Caregiver Summit videos, the Parkinson’s Foundation is here for caregivers. This November, for National Caregiving Month, we are asking our PD community to share their caregiving #KeyToPD. These care partners tell us their #Keys:
“I use a black container to put my husband's medications in when I get them ready for him to take. I used to use the clear or white plastic cups, but since most of his pills are white or light colored it was sometimes difficult for him to see them. Then I found some black sauce cups from an Italian restaurant and he can now see the pills much better.”
– Susan W.
“Being a caregiver is probably the most difficult job you’re ever going to have. The only way you can do it is to take care of yourself. You cannot say, ‘I don’t have time for me.’ The person you’re taking care of wants the best for you because you’re giving the best to them. Don’t be a martyr. It’s okay to take care of yourself.”
“Planning. I am the live-in caregiver for my mom with PD. I set aside a few hours one day a month to set up her pills in four, seven-day containers. That way in case something comes up, at least we have her pills ready. Also, I set alarm timers in both our phones for her pill times. Such a big help!”
– Megan F.
“A ‘couch cane.’ This allowed my mother more independence for a while longer. She could get herself up from her couch using the couch cane. Her walker was right next to it, so once she arose, she could use the walker to move to the bathroom on her own.”
– Jean B.
"When you go to the support groups, when you go to the meetings, you meet other people with the same problems, the same difficulties. It’s a wonderful way to communicate, understand what you’re up against and get advice from other people. As you get together you start talking, you start confiding, and you find that you get people that are very willing to listen. That’s very important to me.”
“We used to carry 2-ounce slices of cheese and 1.92-ounce single-size candy bars. Whenever my wife's dyskinesia got bad, she would eat one or two slices of cheese and the protein would counteract the excessive Sinemet causing the dyskinesia. Whenever her feet froze to the pavement, she would pop a chocolate bar and that would unfreeze her.”
– George A.
“Even as life changes, never stop striving to increase the qualities of your life together.”
The Parkinson’s Foundation does not endorse products mentioned in this article.