We hear it frequently: Our PD community is vibrant, well informed and always willing to extend help and support as well as share their experience of living with PD.
In the past 3-4 months, I attended several PD related meetings and events. I found myself involved in several informal conversations with fellow PwP’s and the spouses who attend to their care. I inquired about their perceptions as providers or receivers of care.
Their expressed views were spontaneous, heart-felt, while also interesting, reflective and well-reasoned. Consider the following ones:
- Caring for a spouse with PD is difficult and demanding, physically and mentally. The demands increase as the illness advances.
- The practice and outcome of caring and being cared for is influenced by the quality of the bond between the PwP and spouse: how they communicate, make decisions, meet and resolve conflicts and stressors.
- PD seriously challenges a couple’s relationship by altering, and quite often reversing their existing roles and responsibilities—their power structure. The one who led may now have to follow. The one who followed may have to lead. These are difficult transitions to negotiate. Success or failure depends on the involved individuals capacity to tolerate structural changes.
It was also interesting to hear that when folks spoke about the act of caring for a loved one, they had a language preference. Some emphasize the descriptor “caregiving” while others spoke of “carepartnering.”
- Those who spoke of “caregiving” focused on the figure of the caregiver, on whose shoulders rest the success or failure of the caring project. It was understood and appreciated that the caregiver assumes a demanding role, one that will require for more and more energy as PD advances. While caregiving could be rewarding in a moral or ethical sense, it is feared that the experience is more likely to result in caregiver self-sacrifice, exhaustion, burn out or depression. Consequently, and in order to prevent such outcome, the caregiver is reminded to attend to his or her own needs and is encouraged to “recharge the batteries” through exercise, yoga, music, dance, or support group participation.
- Those who preferred “carepartnering” expressed a comparable appreciation for the role of the provider of care. But they added that they did not exist alone or in isolation, but functioned in an intimate, spousal relationship, a partnership. The receiver of care has responsibilities in the caring process too. Both have different and separate life stories. But together, as partners, they have forged common goals and a common destiny. Just as important as a role to play in the management of the disease. As a couple – as partners – they understand that the stress and burnout of one translates in similar fate for the other. The respective roles are not identical in responsibilities but complementary, based on each individual’s strength and capability. Both interacting parties recognize that PD will present bigger and bigger challenges as the disease advances. Consequently, they must remain flexible and open to dialog vis a vis changing demands.
- These two perspectives were viewed as helpful, each illuminating our understanding of what is involved in caring.
One respondent stated, “In the early phases of the disease my husband and I were care partners. But now, in the advanced stage, it is just me – I do everything. I am the only caregiver. Maybe partnership is what we aspire but it is not what transpires.”
Another said, “In our situation, I carry the physical and emotional burden that comes with caring. But my partner carries one too—the debilitating disease. I feel that, still, we are in a partnership– although it is more spiritual. It is from that vantage point that we acknowledge, thank and support each other.”
Yet another respondent noted: “I think that, much too often, we focus on the physical care of our loved ones, like the activities of daily living. But we overlook their spiritual needs or their mood states. It is important to keep in mind that a person can, indeed, be physically incapacitated, but still can remain mentally alert, can listen and enjoy music, can show a sense of humor and can share those experiences with a spouse.”
In sum, our respondents offered useful, practical views that can be of clear benefit to those who provide and receive care. It was rewarding to observe that the conversations on these matters, while at times different in emphasis, shared a common goal—to stand tall and mutually supportive as we face the challenges of living with PD.
This post was originally published by its proprietor, the Northwest Parkinson’s Disease Foundation. It is reproduced here with their permission.