Dealing with Changes in Functional Ability

Question: Regarding the Promoting Positive Solutions column in the last issue of Post-Polio Health (Vol. 29, No. 4): I can identify with the person in the question. I also had polio as a teenager, and, like him, I am still on my own with assistance but concerned about what will happen to me if my situation worsens. I don’t think the columnists understand the problem. Loss of independence is a heavier problem than is reflected by their answers; they see this problem only on the surface. It is depressing to think about transitioning from being autonomous to depending on strangers as caregivers who then become dependent on you for their livelihood. If you are a polio survivor – you have the right to be depressed!

Response from Rhoda Olkin, PhD: It is good to get feedback about a previous column. I am sorry my answer seemed too superficial. I can assure you I do understand the psycho-emotional turmoil that accompanies decreases in independence, as I too age with polio and find my abilities declining and my need for assistance increasing.

Let me address the two key aspects of your comments. The first aspect is about what you call “loss of independence.” Why put this is quotes? Because I want to reframe it. Having someone help you with tasks or even doing them for you is not the same thing as loss of independence. I have someone who does my laundry, changes the sheets, goes grocery shop-ping, vacuums, cleans, runs errands, changes light bulbs and scoops up the dead mice my cats bring me as gifts, but I still consider myself independent. That’s because I ask her to do those things, and because doing or not doing these tasks myself in no way defines who I am. Independence is not an either/or – either you have independence or you don’t – but a matter of degrees of independence.

As I notice changes in my functioning, I have to make adjustments. For example, I use a wheelchair more in the house than I used to, and walking the few steps from stove to sink with a pot full of boiling water and noodles became scary. So now I have a microwave container for making noodles that allows me to make them myself. Or sometimes I ask my assistant to make a big pot of noodles at the beginning of the week. But neither the change in how I do things nor the assistance in making noodles affects the essence of me: I am not defined by the noodles I make! But let’s think of a harder example: At one point I had to give up using woodworking tools, hence letting go of a major hobby of mine. Of course this was a harder adjustment than the noodle-making problem. I had to find different hobbies, and truthfully, the new hobbies were not as satisfying as woodworking, so this change required more personal readjustment than I would have wanted. Yes, I was sad, but not depressed.

Which brings me to the second point, about depression, and your assumptions: (a) that depression will accompany changes in independence, and (b) that polio survivors have a right to be depressed. I take issue with both of these points. And I say that as someone who has had more than my share of depression in my life. Depression is not a necessary or even usual response to changes in functioning. It should not be expected, it should not be thought of as typical, and it should be aggressively treated. Generally it is not the decrement in functioning per se that is the root of any depression, but the loss of socialization and activities that lead to depressed mood.

Longevity is most associated with continued socialization, so work on that aspect of life. And if living alone, I recommend cats – they don’t need walking, there are automatic feeders and litter boxes and they cuddle!

Post-Polio Health (Vol. 30, No. 1, Winter 2014)