LIFE: Well the New Year has come and gone. The Christmas decorations have been put away. The lights are coiled up and put away. I’m making new file folders for receipts and filing the old stuff for taxes. Kathy’s health records and hospice info is in a file box. Sympathy and Christmas cards have been put away. I seem to be getting a handle on a some of my stuff. But it is slow going.
Some things haven’t really changed. New Years Day is just a day. It doesn’t have the baggage like Christmas and our anniversary. Marty still checks Kathy’s room when he wakes up. He pokes his head in to see if she is back. Then he comes to wake me up. At about noon he tells me we need to go for a walk. Rain or shine or cold. I am a little bored with our walks to the park. But he finds something new to smell every day. Or finds something to eat if I am not paying attention. He still hates getting into the car so I save car trips for important occasions.
I’m still plugging away at Kathy’s art. Since the exhibit is still in the to-be-determined future, I have covered her work with plastic and I’m still repairing some of the pieces. I haven’t been able to firm up gallery space for spring, so it may wait until fall.
A visit from Su. Financial contributions still come in and I really appreciate it. Last week the doorbell rang and it was Su, one of our first health aides. She was the companion aide from Taiwan that came for one hour each Wednesday. (Winter of 2013). Su would show me how to cook Chinese style. She really only worked for Kathy for a few months, so I was surprised to see her. She had seen the article in the newspaper about the art fund and handed me what I thought was a sympathy card. I think because her English is a work in progress she didn’t realize from the article that Kathy had passed away. We talked about that. I asked how her life was going. She was surprised I remembered her or her name. She has a young son who is developmentally disabled. So she keeps working to support the aides that take care of her son. I guess the agency she joined didn’t work out well. After she left I went upstairs to open the card and it was a large cash contribution. But there was no card. And no address. No information. And “Su” was just an anglicized nickname. I called the old agency we had and spoke to our coordinator. She remembered Su. She had to do some digging but she found her actual name and address. I am a pretty good internet detective but it would have been a long process for me to find her and send her a thank you card without knowing how to spell her name. In my card, I also thanked her for teaching me about Asian cooking.
Caregiving support groups. I have continued to go to my two support groups. Almost everyone else is still in the middle of caregiving for their spouse or their kids. It keeps me grounded knowing that at least Kathy’s suffering is over. And I can move ahead. But even when Kathy was still alive I felt lucky that I didn’t have to deal with some of the behaviors and issues that the others were going through.
At my dementia caregivers group in Wilbraham, instead of bringing a snack, I brought packages of bathroom wipes. I still have a whole big carton of them. There were only a few takers, though. One of the members is going through a bad time with her husband and her own health issues. She asked me, “So there is life on the other side?” I nodded yes.
Save the date? The Huntington’s Caregivers Support Group in Connecticut had sent out a message indicating that we were meeting on the first Tuesday of January instead of the second Tuesday. I put it in my Google calendar. I responded that I would attend but asked if this was something new. Apparently the date in the email was an error and a flurry of emails went out to everyone that the meeting was really on the second Tuesday of January, like usual. So, I felt like I had done a good deed.
But guess who forgot to change his calendar? So, last Tuesday, off I went. I really was not excited about the long drive through Hartford rush hour traffic to get to Farmington. My phone GPS took me literally over the river and through the woods. Well, through the woods and over the river twice. There was some sort of accident somewhere. So Googal, as I call her, sent me down side streets and across bridges. I finally got there. It took me a while to figure out I was a week early. I drove back through the traffic and Marty looked at me like I was some sort of idiot. This Tuesday I will go back but maybe I’ll take a month off since I went twice this month.
I signed up for Medicare last week. I was a little confused. What else is new? I contacted the Hampden Senior Center and met with Becky, the director. She is a Medicare SHINE (Serving Health Insurance Needs of Elders) counselor. At my appointment, she went over what was covered by Part A (the free Hospital part) and what would be covered by Part B ($105/month towards most of the medical stuff). Massachusetts requires you to have Part D (drug coverage). And then there is “Part C” which bridges all the many gaps in Medicare. “C” includes all of those annoying TV ads for AARP and Blue Cross. Since I am not getting my Social Security yet, I will have to pay the Part B bill each month. Once I start getting benefits they will take it out automatically. For the other Parts C and D, I’ll sign up for a Medicare Advantage HMO plan from Tufts. One has a $0 premium but it will cover the gaps and cover the few medicines I use. Basically, if you pay more for your premium your co-pays at the ER and doctors office are lower. Since I’m still pretty healthy I’ll go with the $0 one and pay more at the doctor’s office. Some of the plans from other companies have high out-of-pocket maximums and ridiculous co-pays. I will miss the coverage I am getting under the Affordable Care Act (aka Romney-Care, here in Massachusetts). And Kathy’s coverage from Fallon NaviCare was incredible. But that is for people who would otherwise be in a nursing home.
Off to Reno. A week from Sunday I’ll be flying out to Reno to help my sister Barbara as she recovers from hip replacement surgery. It turns out I am the best nurse in the family after taking care of Kathy. So I am glad I can help. My family is blessed with many good things but hips are not one of them. My dad had one of the earlier surgeries in 1968 at MassGeneral. It was considered too specialized to be done at the hospital where he was on staff. Now it is practically a drive-thru. Not really.
And it will be good to leave the house for a week. Marty will be staying at our dog sitter Joanne’s place. He stayed there when Kathy was in the hospital with pneumonia in 2014. And he stayed with her the few times we went away. While I am out west, if Barb is doing well enough I’ll try to visit Kathy’s sister, LouAnn in California. She has Huntington’s also. She and her husband Michael live a few hours from Reno. I will trust Googal to get me there, barring a blizzard in Truckee.
I still miss Kathy a lot. But it’s okay. The other day I found myself in Holyoke where we had our studio. They have finished some of the projects that were being planned when we were up there. Part of the Canal Walk is finished. There are a lot of activities going on at Open Square. And the Canal Studios, where we worked may get developed as artist live and work condominiums. Some other things haven’t changed much. There was a used car lot on the corner of Main Street that just had a hand-lettered sign “Rodriquez.” Sometimes there would be cars. Then the next time the cars were gone. Then they were back. I remember Kathy saying, “One minute Rodriquez…” She meant to finish with, “has cars, then doesn’t.” But, from then on we referred to that corner as “One-Minute Rodriquez.”