My youngest grandson was born on this day twelve years ago. I can picture my sons at 15 and 12 cautiously holding the sleepy, swaddled blue bundle, as my daughter sat in the hospital bed, impatient to go home. They became uncles first sixteen years ago, then again 13 years ago, but each birth was different. Like real magic. If I've done nothing else, I can always find comfort in their existence, in the tapestry of love.
The tapestry of love is not without its worn places, its holes, mended places, colors slightly faded over time.
Faded over time is how I thought the past would be, not the present or the future, changed by these Alzheimers nights and days. Sometimes, I wake up wanting my life to be different, lying in the dawn darkness. Small things help, like walking outside to get firewood halfway through the night, looking up to the sky oddly grounds me. As if the moon and stars are reminding me not to get lost.
To get lost, in March, halfway through, would topple this house down. So, I'm working on our taxes, Hurricane Sandy storm damage finally mostly repaired, getting my teeth fixed, planning my mother's 90th birthday at the end of April, taking her to doctors' appointments, keeping an eye on my everchanging husband and helping a few people.
A few people includes family members and friends, on various topics ranging from advice to the lovelorn to hockey to house repairs. I never realized how helpful a visual arts degree could be in fixing sump pumps. Mostly, I just listen to the people and try to be encouraging, as many of the issues are cyclical. With a few more Caregiver Support group meetings under my belt, I am no longer "the new one." I find the camaraderie both tragic and helpful, moments of tears and laughter.
Moments of tears and laughter, because we all know there is no cure. I still receive unsolicited advice about genetic testing, the benefits of coconut paste, the wonders of healing touch, and lately forwarded emails from Jesus telling me not to get an abortion which I admit to not seeing the connection there to Alzheimers.
To Alzheimers! I followed up on a recommendation to have a comprehensive evaluation at a well-regarded geriatric and Alzheimers facility that promises a wide scope of services. Took me about five hours total on the phone to set up the appointment, which frankly raised a small red flag. They encourage family members who are close to the client/patient, so I asked both of our sons and my daughter to go with us. I described it to my husband as a family outing to get more information about how we could help him.
How we could help him turned into an excruciating half-day event, with much of the information I had given over the phone, plus the 12 page pre-packet being entered into a computer very slowly. We were seen on time, first by a social worker who described the evaluation process, which involved a psychiatrist and the social worker to speak to us briefly as a group, then him separately and the family separately, then they would make recommendations. Sounded good, simple even.
Sounded good, simple even, however it was not. The social worker was excellent, cheerful with a great attitude and sense of humor. The psychiatrist was narrow-minded, highly opinionated, and told me that basically I was doing everything wrong. She also questioned and contradicted the primary doctor's as well as the neurologist's reports. My adult children spoke up frequently and she was dismissive, not only of their viewpoints and feedback but she actually accused me of being unkind to my husband by giving him one of his medications at night, as some people get nightmares from the drug. I told her we were following the neurologist's directions and she just shook her head no.
She just shook her head no, that would be me at a certain point, realizing this was not going in a positive way. Eventually, the evaluation was over and I took the list of changes the psychiatrist had written down. My husband wanted to hug the social worker goodbye and he did, with great enthusiasm. Driving home, eating food I had brought with us, my husband looked out the window and said he didn't like the place because there were too many signs and he did not like the doctor. I agreed and said, "Don't worry, I don't think any of us liked her. I can't wait to be home."
Home is really where the heart is, which I realized as one-by-one my adult children called me, to make sure I was okay and to tell me how off the doctor was, each with a slightly different way of saying it. So, March, halfway through, you cannot sadden me with your indecisive days. I am armed with love and plans for a garden. Out of a mostly bad experience, I am once again aware of how life can always surprise, how with a few words people can either put you down or lift you up.