My 83-year-old father was diagnosed with Parkinson’s disease several years ago. Now he is occasionally incontinent, with forgetfulness and episodes of confusion. He walks with difficulty with a rolling walker and recently fell and was hospitalized. The doctor is encouraging my mother to get a home health aide. My mother refuses to let anyone come in to help. My sister and I live and work out of state. I am worried about both of my parents.

Older couples often have been married for 50 and 60 years or more. They have spent their lives facing challenges together, relying on each other. Sometimes older adults are uncomfortable allowing a stranger into their home and accepting a loss of privacy. The ill spouse feels vulnerable and dependent. He or she can make many demands on the other spouse. A spouse can feel that caregiving is their sole responsibility. If the spouse acknowledges that it is more than he or she can do, it may make them feel guilty. And for both the well and ill spouse, there is an element of denial or wishful thinking that blocks their ability to think realistically about their situation. They make every effort to minimize the problems. They want to make things feel “normal.” Another important factor is financial. Your parents could be concerned about the cost of services and how they will afford them.

Nevertheless, you are right to be concerned. The situation that you describe puts both your father and mother at risk. If your father requires hands-on care that your mother has not been trained to provide or is too physically taxing, both of them can get hurt. At the very least your mother can get caregiver “burnout,” becoming at risk for illness and depression.

Unfortunately, Parkinson’s disease is a progressive neurological condition and your father will continue to decline. The sooner professional services can be introduced, the better the outcome. There are many resources available.

A geriatric home assessment by a certified care manager can be scheduled. Your father’s medical history is reviewed; his level of functioning, cognitive level, mood state and home safety will be evaluated. Specific recommendations will be provided in a written report.

Family Meeting: Arrange a time for you and your sister to visit together to discuss the issues raised in the geriatric assessment in person and express your concerns. If your parents become upset, it can be helpful to have an objective facilitator such as the care manager, counselor, physician or clergy.

Negotiate: Encourage your parents to pick one service that is least threatening and suggest a month trial. Chances are that once they experience the benefits, they will be more open to other suggestions. It could be a home health aide to help with bathing, dressing and grooming; home modifications such as a grab bar in the shower or a raised toilet seat; attendance at an adult day program, a Parkinson’s exercise group or caregivers’ support group.

For further information you can contact Susan Lilly, LSW, C-ASWCM at 201-750-4247 or email [email protected].

Resources

American Parkinson’s Disease Association

www.apdaparkinson.org

800-223-2732

Partners in Parkinson’s

www.partnersinparkinsons.org

By Susan Lilly, Jewish Home Family

 Susan Lilly is the director of Aging Life Care Management of Jewish Home at Home, the Jewish Home Family’s community-based program whose mission is to provide the expertise, services and support that enable older adults to age safely and meaningfully in their own home.