My name is Jane and my husband of 34 years was diagnosed with Dementia/Alzheimer’s nearly two years ago. (Of course, his symptoms began much earlier.) I write a weekly blog as the tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in. I clearly didn’t make a living as a writer. In fact, I am dyslexic, which makes writing an interesting challenge. My career was in business management. That fed my purse, but to feed my soul, I was an abstract artist, designer, and an actor and director in Community Theater. I can find humor in most things. To me, life is a comedy and is better set to music than tears. But, I also know that sometimes life can be a dark comedy. Someone said to me once, “Don’t you ever take anything seriously?” The answer, “Not if I can help it.”
Which of these best describes you?
I am a caregiver -
If your loved one was experiencing signs of dementia, would you keep it a secret?
Who are you here for?
The thing I miss most is...
- Companionship, partnership, deep conversations with my husband about life, world events, family and friends. My husband's laugh that once filled a room. Being part of theater. Singing in a group.
I first began to worry when...
- It started seven or eight years ago with little things, you know, that ding on the golf cart that we didn’t seem to know how had gotten there. Or, the spill on the carpet that wasn’t there yesterday. How did the garage door open itself and stay open all night? What would cause my husband to out of the blue, say something outrageous to the neighbor? And then, there was the screwed up checkbook that had once been managed with the precision of a drill sergeant. Things like this happened over time, slowly and mysteriously. And, there was the kicker last year: Why would anyone get up at 1:30 in the morning and walk up and down the sidewalk looking for the newspaper? “Houston, we have a problem”.
The hardest part of my today was...
- Making sure that my husband is safe. Being in control of our situation without my husband feeling controlled. Being patient and maintaining a sense of humor.
The best part of my day today was...
- Knowing that I helped my husband do the things that will contribute to his physical well being, good diet, exercise, medications, etc.
I didn't consider myself a caregiver until I had to...
- To stop outside activities and basically start running the household. No more long days spent creating art.
I have found the most support from...
- Friends and family
I have felt most abandoned by...
- I'm not sure I can answer this since we moved away from many of your good friends. They may be feeling abandoned by us.
The thing that would surprise most people about my day is...
- The level of my husband's physical disabilities and the extent of changes in demeanor and cognitive abilities.
The funniest thing that has happened was...
- Well, there are humorous things that happen daily. But, finding the remote control in the fridge is right up there.
The gift of being a caregiver is...
- Knowing that what you do on a daily basis matters and is keeping the person that you love alive.