Monday, January 16, 2006

Caregiving: visiting & parties

     Dr. Seuss taught us that it is "Fun to have fun, but you have to know how...". The wisdom in The Cat The Hat applies throughout life. Patti enjoys visiting and being a part of friends’ lives. On her own, her symptoms and natural barriers would prevent her involvement. As a caregiver I can get her past the barriers but that in turn opens a Pandora’s Box of new and unusual challenges.

     Homes of friends, unless disabled themselves, are never accessible. Plain brute force can empower access. Fortunately if a ‘party’ that implies bodies and all things are possible with teamwork. She can get IN but … unless a person in a wheelchair “lives” in that house no one arranges their furniture to anticipate a moving chair. Wide open space in every room, foyer, and hall is not a concept in home decorating in America. <grin>

     Patti’s MS symptoms of visual impairment and mental confusion work in bizarre tandem in such social situations. 

     Even an able vision person will not know everyone at a party. Patti however cannot see anyone unless they are within a few feet of her face. You cannot hang a sign on Patti telling people she is visually impaired and please stand or sit within three feet to talk with her (especially since able bodied people tend to try not to crowd each other).

     Mental confusion accelerates because she can’t see most of what is going on yet hears multiple conversations all around her.Trying to process the correct information and participate in a conversation one on one for Patti is unusually challenging. As best as she can describe it, I understand it to be somewhat like trying to walk through ever deeper and deeper mud. 

     I don’t want to be Seuss' sentient goldfish hovering over Patti yet I do have to stay close. Well intended people plus MS symptoms could range from a mess to a disaster.

     She has a right to try to have fun and she enjoys it in her own way for as long as she can. Her friends and people enjoy her company.

     Multiple Sclerosis is complicated and I believe that people never really learn about any disease until it has a face they know.

1 comment:

  1. We picked out our current home specifically because it is wheelchair friendly...

    all we need is a ramp...


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