Those Inexplicable Instructions!

It happens to every caregiver. You're at the doctor's with your loved one. You and your loved one are both feeling well, and your loved one is looking forward to a vacation away-with some strenuous physical activity. Just to check, you tell the doctor your plans: you're off, together, to the Great Smoky Mountains for some hiking. A concerned frown comes over the doctor's face, and your doctor says, "I really don't think you should do that..." The voice trails off, and-if there's an explanation offered- you don't quite understand it, or it's lost in the immediate impact of the doctor's statement.

What do you do? You could...

Listen to what you think the doctor said, and change your plans, even if you're not sure why; Keep your plans and go, since you (and your loved one) feel fine, in spite of the doctor's concerns; or Go back: ask for a clearer explanation.

Please understand. Why would the doctor be concerned about healthful exercise with someone who's ill and needs care? While we all understand that we want to keep our charges as active and fit as possible within their limitations, there may be subtle problems that, as caregivers, we don't see.

For example, a simple caution to avoid an activity such as hiking may cover your doctor's concerns that:

Your loved one's bones may be unusually brittle or susceptible to fracture (osteoporosis, metastatic cancer, renal disease, long-term corticosteroid steroid therapy); the skin and soft tissue of the legs have poor circulation and may develop chronic ulcers or long-term healing problems after a minor injury or infection (diabetes, renal disease, peripheral vascular disease, chemotherapy, lymphedema); peripheral nerve problems may predispose to missteps by making it hard for your loved one to sense or control his exact foot placement on uneven ground (diabetes, renal disease, alcoholism); or your loved one has intellectual limitations which may predispose her to wandering away and getting lost in unfamiliar surroundings (Alzheimer's disease, stroke, other organic brain syndromes).

Before you change your plans because of your doctor's concerns, or decide to ignore the concern and take your chances, ask the doctor to clarify, in words you can understand, and apply to your daily caring for your loved one. If the doctor is concerned enough to want to limit what sounds like a completely normal vacation activity, the concerns may apply to the rest of daily living as well-and as a caregiver, you need to understand the severity and depth of problem the doctor is seeing. If the doctor is merely flagging the need to take sensible precautions as you venture forth, you need to understand the full extent of those precautions and decide how best to apply them to your plans.

Your doctor will understand that chronically ill patients (and their caregivers) need to lead their lives as normally as possible. That includes, maintaining the ability to be physically active to the maximum degree reasonable. Discouraging normal physical activity leads to loss of muscle and bone mass, diminished ability to perform normal tasks of daily living, and a growing sense of personal disability and ineptness which limits attempts to perform even further.

So, it's in everyone's best interest for your doctors to encourage you and your loved one to be as active as possible for as long as possible. If you find yourself being cautioned about a planned activity, ask your follow-up questions, and listen carefully to the answers-then decide how much change in your plans may be needed. It may be, "None." But at least you will have a fuller understanding of the risks involved and how better to choose activities for your loved one.

Take proper care of your loved one, and yourself, as caregiver. Arm yourself with information. Then make your decisions.
 

Barry S. Tepperman, M.D., M.B.A., F.A.C.R., co-Director of Radiation Oncology for Memorial Healthcare Systems, Hollywood, FL.

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