Like 5.4 million other Americans, Charles Lewis has Alzheimer’s disease. His life has changed significantly in the near-decade since his diagnosis. Precious memories have slipped away, language is increasingly difficult to process, and relationships have changed.
In October of 2007, Charles moved in with his daughter, Arlene Lundberg, and her husband Jeff. At first Charles went to work with Arlene at a local day care, which she managed. They worked long hours and Charles’s time with the children gave meaning and purpose to his days. When the family moved to Manhattan that meaning and purpose was gone. “Once we got settled in, things became mundane and we found that Daddy was VERY bored and I could not come up with enough to keep him engaged and happy. We both missed the children.”
Then the family was introduced to RSVP and things began to change. Volunteerism gives him the opportunity to get out among his peers. He makes them laugh and they make him laugh,” says Arlene. It took some time to figure out which volunteer assignments worked best for Charles and how much he could handle. He feels the pressure to hide his dementia symptoms when in public, which can be exhausting. Arlene explains, “We [had] to shorten the amount of time we allow him to volunteer. He used to be able to handle a whole day, but now it is too much. When he is away from home, he has to keep up the image of being normal, and that is extremely taxing. The longer he ‘has to be normal,’ the more it tires him and the more likely we will have problems at home in the evening. Once it was so bad he left home. He couldn’t tell me where he was going; he just could not stay ‘here.’ I got him inside and into bed and the next day everything was back to our version of normal. Now we just let him volunteer away from home for about two hours.” The volunteer leaders help Charles keep his strength up by providing food and drink while he is volunteering. “We have found that if we can keep him from getting hungry, the fatigue is not insurmountable.”
When Charles isn’t going out volunteering, the family brings volunteerism home to him. The hours he gives to community organizations help Charles maintain his sense of self. “Daddy worked his whole life and has always felt very strongly about working. He used to bemoan the fact that he is no longer employable, that is where volunteerism came in. He does not get paid, but he is useful! Being useful is a very good thing! It leaves him with a feeling of satisfaction and worth, and in Alzheimer’s disease, feelings last longer than memories, so ‘it’s all about feelings,’ and the good ones set the mood in a fabulous way,” says Arlene.
The volunteer jobs also help take the pressure off of Arlene.“If we didn’t have the RSVP program, I would be racking my brain for things to have him do. He used to enjoy coloring, but that has passed just as time has. The newspaper only comes once a day although he reads it cover to cover when it comes in the evening and several times the next day. Mostly, though, the things I can give him to do are not the kinds of things that make him feel really useful, and that is what he needs more than anything. He has always been useful and he still needs to be.”
Charles has had his ups and downs as he has battled this disease over the past couple of years – but always with a smile on his face!