Why is my WWWW (wonderful wild and wacky Wednesday) group so important to me? Let me count the ways:
They are the people, a special group of friends with whom I can talk about anything Alzheimer’s and not start from the beginning each time. The conversation is continuous.
They understand at the most profound level what the journey entails.
They make things seem normal, whatever that means for that moment.
No self-censorship is necessary; no massaging of the message or making things look pretty. Instead we share to learn more.
When one says: “Last night we had a big flare up” a fire does not come to mind but we ask instead: “Did you have to go to the Emergency?”
If I say that a couple more cells died yesterday. No-one looks quizzical or thinks I am ill but will instead ask: “New behaviour? What did you notice?”
If we ask another if he is the husband today and he answers that he thinks he was number four earlier but could be number two at the moment, we know exactly what he is saying and nod sagely.
We throw around words like, Fronto-temporal dementia or Pick’s disease, Lewy body, vascular dementia, plaques and tangles and many other convoluted and quasi-medical profundities that we are just beginning to decipher and that are specific to dementia. It has its own unique jargon and we are so adept at it.
We sigh at shadowing, anxiety attacks, hallucinations, sundowner syndrome.
We are multilingual or at the least bilingual. So proficient are we at Alzheimer Speak.
We hug and can feel the comfort pass from one to the other. I believe in the magic of hugs. It works.
We also live in two worlds. Not an imaginary world or a fantasy world. Those worlds you conjure up and are able to control. No. We live in two complete, separate worlds. The real world and that alternate reality which is Alzheimer’s world. We are true geniuses.
The Meander: The company of friends, of people in the same boat who can laugh with you and lighten the darkness, who walk the road with you, who care and share is the caregiver’s lifeline.