“Much of the challenge of caregiving is emotional, not functional. It is also possible that the overwhelming functional burden makes caregivers emotionally more vulnerable and less resilient.” – Catalyzing Technology to Support Family Caregiving
You will experience a range of emotions over the course of your loved one’s Parkinson’s journey. Shock and denial at diagnosis, or validation that your suspicions were confirmed; fear of the loss of control; frustration as symptoms worsen; satisfaction from caring for a loved one; concern about finances; shame because you wish it were all over; exasperation, relief, anger, sadness, joy. As the disease progresses and your role as caregiver evolves, you will have to come to terms with the disease again and again.
Caregiving is a demanding job. There is always something else that could be done, so feelings of guilt at not doing it all are normal. Ask yourself if doing more is really necessary or possible. Accept your limits.
As Parkinson’s progresses, it is hard to let go of the hope that your loved one might return to his or her former self or that things will go back to “normal.” Even when you have the diagnosis, know the statistics and witness the effects of the disease yourself, you might still feel like your relative could be the one who beats the odds.
In addition, family dynamics add complexity, and past feelings can affect how you respond to situations now. The historical relationship between care partners has a huge impact on how care is given and decisions are made. Real-life examples illustrate this point:
- Case 1: Sam and Barbara were both in their mid-80s when Sam was diagnosed with Parkinson’s disease. He did not have a tremor, but his stiffness and slowness made it hard for him to get around or to help Barbara in caring for their home. About three years after being diagnosed, Sam fell and broke his hip. Rehabilitation did not bring him back to his pre-fall level of independence. After much discussion, Sam and Barbara decided that she could no longer care for him at home and he remained as a resident in the rehabilitation/skilled care facility. Barbara felt sad that Sam was no longer at home with her, but when talking to her support group members told them she realized it would have been dangerous to both of them to bring him back to the house. Sam passed away about thirteen months later, and Barbara continued to be satisfied with the decision they had made although she missed him terribly after their many long years together.
- Case 2: A man in his mid-sixties was diagnosed with dementia with Lewy bodies (DLB). He was a former county politician with connections everywhere. With his DLB, he was a subject of pity, while his wife was often criticized for her seemingly “cold” response to him and willingness to place him outside the home as soon as he met skilled care requirements. In a counseling session, she revealed that he beat her frequently during their marriage. When she tried to report him, his police connections looked the other way or told her it was her fault for provoking him. When it came time to provide the type of intense care he would have required, she knew she couldn’t do it. She had insight into the effect of the past relationship.
- Case 3: An adult son in his 50s lives with his mother, who is in her 80s and has advanced PD and Parkinson’s dementia. She is bed-bound, often drawn up into a fetal position. He does all the care for her, even the most intimate things. He refuses to accept hospice and continues to search for something that will “make her better.” He admits he is not ready to let her go or even to accept comfort care. When she dies he will have no life, since he has no job, no friends and no interests outside of caring for her. He has no insight into the possibility that he is forcing her to live on in circumstances that may not be the best for her, but meet his needs.
Ultimately, caring for yourself mentally and emotionally requires understanding the changes in the person you’re caring for and adapting to them. The relative or friend you’ve always admired for his strength might be showing weakness; on the other hand, his perseverance and optimism in the face of debilitating illness might demonstrate strength you never knew he had. Your emotions throughout the journey will be varied, and some might surprise you.
It is important to be honest with yourself about what you feel and to have an outlet for your emotions. Some of these emotions will be appropriate to share with your loved one, but some will not. Make sure you have a person or group you are comfortable sharing your feelings with, so you can freely express everything that is on your mind. If you need help locating a support group, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or firstname.lastname@example.org. Read Balancing Life and Caregiving for more insight into the value of maintaining social connections and other coping strategies.
In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for caring for the person with Parkinson’s and caring for yourself. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.