You have brain disappearing disease!
October 28, 2017 § 3 Comments
Today, as we approached the neighborhood where my sweet husband has lived for more than thirty five years, I asked and he nodded that he did not know where he was. I said that’s alright, I didn’t want him to feel sad, “you have brain disappearing disease.” He said “I do?” Yes, I said and we both laughed because it doesn’t seem possible. It is as if Pac-Man, the 1980s video game character, has come to earth and in the form of dementia, is gobbling my husband’s brain. His personality persists – he is kind, sweet, diplomatic and soft spoken but he needs more and more help with the simple tasks of daily living such as how to dispense soap for hand washing or putting on a jacket. How mysterious waving one’s hands in front of a motion-activated towel gadget seems, he thinks I have magical powers.
As we approached the front door of our home, I watch his face for a flicker of recognition. Standing in our kitchen, he did not know where the restroom was or his seat at the table where we shared so many meals.
The published stages of dementia are no longer useful as an informational guide because he is physically strong and we continue to work out with our personal trainers every week. I dreaded the final stage 7 because of incontinence which limits the ability to go outside, away from restroom facilities. We have ‘accidents’ – I think of them, now, as ‘our adventures’ and there is no way to be prepared. We stay close to home or his residence, at The Kensington. I think the care managers are getting used to seeing us rushing back, at times, and are wonderful maintaining his new ‘normal.’
He no longer knows my name. I was emotionally prepared that this would happen. I tell him my name and he says “is that you?” quickly followed by a hundred “I love you.” Love needs the simplest of words. He lights up and blushes with happiness when he sees me come through the doors of the dementia care facility. We have always enriched each others lives and when we are together, I am reminded about the depth of love, passion is forever through shattered relationships, it is heartbreaking. Dementia is the thief.
heartbreaking and beautiful at the same time….
Thank you for sharing this with us Ruth. As care givers, sometimes we forget to think about the person our resident was before dementia. And just like the individual, every dementia is unique.