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If Your Loved One Has Parkinson’s Disease, Here Are Some Advocacy Tips

My father suffered a stroke at the age of 86. He had received diagnoses of Parkinson’s and Alzheimer’s at the age of 84. As the diseases can have similar symptoms, it was very difficult to pinpoint which disease was causing his behaviors. At times he was depressed, moody, lethargic, and verbally abusive.

After the stroke, he required skilled nursing home care.  That prevented my mother from bringing him home. My mother felt an obligation to place him at a nursing home that was owned by the hospital where he had practiced as a physician for many years. That was our first mistake. We assumed that since he practiced at the hospital well into his 80’s that he would have decent care. Much to our family’s dismay, it was quite the opposite.

My story is no different than anyone else’s nursing home nightmare. But at the time, I was not yet in the eldercare industry and didn’t know any better. I didn’t know that checking the ratio of the staff to residents, observing the staff’s attitude, and watching for possible language barriers were critical components in the selection of a community.

Instead, we made a decision based on emotion. As a result, I found him in a soiled diaper every night. We often waited 30 minutes for someone to answer the call light. If I tried to speak with an aide about it, I was often rudely told, “I’m on break.” At times, I couldn’t decipher a foreign accent. If I passed the break room, there were often 4-5 aides on break at the same time watching television.

If I knew what I know now, I would never have allowed my mother to place him there. The state he was living in didn’t mandate staff to patient ratios in nursing homes. Some states do set parameters for what the ratios should be. The calculations are based upon the number of residents, type of care the residents need, physical characteristics of the building, and doctors’ orders. It basically gives you the minimum number of hours for nurses and aides required to adequately take care of the residents. That’s in a perfect world.

I want you to be prepared to advocate for your loved one who has Parkinson’s while s/he resides in a long-term care community. Therefore, I am pleased to present some valuable tips written by a representative of the American Parkinson Disease Association:

“We often hear about how important it is to have a health advocate. I’m not referring to a Power of Attorney for Healthcare, though arranging for one is an important part of planning for the future. I’m talking about a spouse/partner, a sibling or a trusted friend–someone who is willing to attend doctor’s appointments with you, accompany you to the emergency room or stay by your side in the event of a hospitalization. As a patient, it can be challenging to stay on top of the many aspects of your care. Even if you think you are well enough to be your own advocate, ask someone to be with you.

The same is true if you’re a resident of a long-term care facility. Ideally, you will designate family members, friends, paid caregivers and/or volunteers to keep their eyes and ears open on your behalf. Just being present, paying attention and asking questions can make a considerable difference in the level and quality of care a resident receives. Having been with the American Parkinson Disease Association (APDA) for almost a decade, I have seen advocates in action and can vouch for the invaluable role they play. Advocates can help keep residents safe, improve compliance with doctor’s orders and be a source of emotional support.

If you are considering a move to a long-term care facility, or know someone who is, begin advocating right from the start. Below are a few suggestions. These are specific to Parkinson’s disease but can be adapted for individuals with dementia and other health issues that may lead to residential placement.

Does the facility currently have any residents with Parkinson’s disease? If possible, talk with that resident’s family and find out if their experience with the community has been a positive one.

Does the staff get any specific training on caring for a person with Parkinson’s disease? If not, find out if the Administrator is open to making continuing education mandatory.

Can the facility ensure compliance with doctor’s orders and, if so, how? For example, it is crucial that people with Parkinson’s disease adhere to a strict medication schedule and receive each dose on time.

Does the facility have exercise classes? An in-house physical therapist? Movement, to the extent possible, is a critical aspect of disease management. It also improves overall health and well-being. A seasoned exercise instructor should know how to adapt moves to keep the person with Parkinson’s safe. Some physical therapists have received additional education in neurological issues; their credentials will include the letters NCS (Neurologic Clinical Specialist).

Does the facility include the resident in care plan meetings? Even with the resident’s best interest n mind, it is surprising how frequently residents are not included in planning discussions about their own care. Unless or until this is impossible or unproductive, it is ideal that the resident and advocate be involved in all meetings.

If you would like to learn more about residential care for people with Parkinson’s disease or have questions about advocating for yourself or someone else, please contact the American Parkinson Disease Association at 800-223-2732 or As the nation’s largest grassroots Parkinson’s organization, APDA publishes more than 30 FREE educational publications and maintains a network of information & Referral Centers and support groups across the country.”