Most people rarely see the paddling under the surface, rarely understand the effort it takes to keep those legs paddling, the one thing allowing us to maintain our activities and lifestyles for as long as possible, and to make things look ok to others.
The paddling is really important. It is not only a matter of functioning, but of dignity, as it does feel vaguely embarrassing and humiliating not to be able to speak, comprehend or remember as we once did.
As with any sport or activity, if a person with dementia takes their paddling to an Olympic level, nurturing it and adjusting the method and amount of paddling as the symptoms of dementia change, or as new ones appear, and systematically working on it every day, it can help us function. Christine Bryden and Richard Taylor are two shining examples of this.
My husband is the one person who see clearly how much I have to paddle, how the paddling has had to increase, and how much harder it is getting. I suspect watching from the sidelines, knowing there is nothing he can do other than love me and support me as my BUB, is exasperating and painful. He can see there are days my paddling is completely ineffective, no matter how hard I paddle, and seeing a problem, that he cannot fix, must be intolerable.
Last Saturday night, after setting up for the Big Lunch, one girlfriend heard clearly how my speech becomes effected when I am very tired, how no amount of ‘paddling’ could help me to speak clearly. Our bodies gave in too, and we could hardly walk. And to top it off, she forgot where she had parked the car. We laughed all the way home, joking about our various ‘ailments’ and disabilities, some caused by injury, some by ‘middle age’, and some by dementia.
None of the reasons mattered, we all have burdens or illness, and once we started laughing, they were easier to bear…