Unconditional Love
A Caregivers Journey Through Parkinson’s Disease
HELP WANTED: Untrained family member or friend to act as advocate, care manager, and emotional support for a parent or spouse, sibling or friend, diagnosed with a serious illness or chronic disability.Duties: Make medical decisions, negotiate with insurance companies or Medicare; pay bills; legal work; personal care and entertainment in hospital and rehab. Substitute for nurse, injections, IV, oxygen, wound care or tube feedings are required. Medication management, showering, toileting, lifting, transporting, etc. Hours: On demand. Salary and benefits: 0–Taken from Gail Shehee, “Passages in Caregiving”.
As modern medical technology allow people to live longer than ever before, degenerative diseases are becoming more and more common. In the US there are now 65 million families caregivers, and it is likely that at some point in our lives, we will each provide family care or receive it.
My father was diagnosed with Parkinson’s disease in 2001, and for the last couple of years, my brothers and I have started to take care of him. Our experience is shared with millions of people that suddenly find themselves in the same position: untrained and unprepared to assume the responsibilities of a caregiver.
As a degenerative disorder of the central nervous system, Parkinson’s first visible symptoms are movement-related: shaking, rigidity, slowness of movement and difficulty with walking. Later, cognitive and behavioral problems may arise with dementia, commonly occurring in the advanced stages of the disease. Other symptoms include sensory, sleep and emotional problems. PD is more common in the elderly, with most cases occurring after the age of 50. As a result of the slow and degenerative progression of the disease, the care and the needs of the patient become increasingly demanding which makes the role of the caregiver essential.
I have been developing a project focusing on the way families manage to overcome the challenges in the caregiving journey of Parkinson’s disease, accentuating the psychological, physical and everyday aspects of caregiving. I have also documented other situations of caregiving such as nursing homes where nurses become caregivers instead of families and in other cases when there is no caregiver at all.
Unconditional Love is a project that aims contribute to the awareness of this vital and disregarded issue in order to impact health care system and generate discussion and raise questions concerning this increasingly common condition.
Sincerely,
Ramón Ruiz Sampaio
