Dear Mary,

My brother, who is 77 years old, was diagnosed with something called Supranuclear Palsy. He has trouble walking, is stiff, and falls a lot. His memory is also bad and I can hardly understand him when he speaks. I am his only living relative and am trying my best to take care of him. I am frightened about the future and my ability to continue to help him. His doctor said there is no cure. Have you ever heard of this disease? What causes it and what should I expect?

Yes, I have heard of it and have seen a few cases. It is a devastating disease formally called Progressive Supranuclear Palsy (PSP). It has symptoms similar to Parkinson’s Disease, and includes mood and behavioral changes, depression, and dementia. It is rare and men seem to be affected more often than women are. A deterioration of cells in the brainstem and cerebellum of the brain cause it. Why this happens is not known. Later in the disease swallowing becomes difficult and choking is a problem. There is no cure and treatment is limited to managing the symptoms. PSP tends to progress rapidly leading to total disability within 2 to 3 years of diagnosis.

Research into the disease is ongoing. I strongly recommend that you contact the Society for Progressive Supranuclear Palsy, Inc. (1-800-457-4777) at Johns Hopkins Hospital in Baltimore, Maryland for information. They may also be able to direct you to a support group in your area.

As you know, you need to take care of yourself. Hire home health aides to help with your brother’s care. As you become more educated about the disease, pass this knowledge on to the aides so your brother, and others, will receive the best care possible.

God Bless.

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Dear Mary,

I am tired of hearing people whine about caregiver burden. They should be happy to have their loved ones living and rejoice in each day. I loved my parents and only wish they were here today for me to take care of. I would never complain. I think caregiving should be a joy not a burden. Am I wrong?

No, you are not wrong to think caregiving should be a joy but the reality is, caregivers are everyday people with a multitude of stresses. They are children, spouses, siblings, or friends with jobs and families to tend to. Most start out with a sense of optimism and nobility but become overwhelmed with daily responsibilities and life’s unexpected pitfalls. Many of the caregivers that contact me are at a crisis point and their ability to cope is depleted.

You are wrong, however, to call them whiners. Until you have walked in their shoes you can never know what it is like. I challenge you to volunteer to help a caregiver. Offer to sit with someone’s loved one so he or she can have respite time. Everyone needs to be able to revive, revitalize, and refresh their body, mind, and spirit and caregivers are in dire need of time off.

It would be interesting to hear from caregivers about how they feel about their role. How about it readers? E-mail your comments to me. Let all of us know what caregiving is really like.

God Bless