I always look forward to a new year with some excitement. I also face it with some twinges of trepidation.
Sharon and I continue our path on the new normal.
We are 4+ years into Sharon’s diagnosis of Alzheimer’s in June 2015.
Some of our milestones for 2019 were:
- Taking a fun trip in early October to Michigan, Ontario, Pennsylvania, and Ohio. Highlights included seeing Niagara Falls from the Canadian side: seeing nephew Matt and his wife Lindsey and their daughter Ella Grace; The Rock and Roll Hall of Fame in Cleveland; seeing my hometown Rochester, Michigan; and The Henry Ford (museum and plant tour) in Dearborn, Michigan.
- Celebrating Sharon’s 66th birthday with her and our Houston-based Eat-a-Lot friends in Brenham, Texas, in late September.
- Seeing a new neurologist in October: Dr. Zilli, with the Biggs Alzheimer’s Institute in San Antonio. He ordered an amyvid PET scan (for March 2020), to better understand Sharon’s prognosis. He also ordered / recommended speech and occupational therapy sessions for Sharon, to help her maintain (possibly improve) her cognitive skills for as long as possible.
- Based on Russell Gainer’s (Licensed Clinical Social Worker, LCSW) evaluation in September, Sharon stopped driving around her September 29 birthday. While her mechanical skills for driving still seemed largely intact to me, he recommended that with her diminished cognitive skills, it was safest for her to stop driving. Russell also pointed out that the loved ones closest to the person with dementia often overestimate their loved one’s skillsets. Dr. Zilli, the neurologist, also confirmed this recommendation for Sharon not to drive, when we saw him a few weeks later.
- We went bowling with the Big Ten Alumni Clubs (of San Antonio) in February. Early in her third game, Sharon took a bad fall (she fell not because of imbalance issues – her balance remains intact – but a judgement issue of walking well past the foul line onto the very slick bowling lane), but she saved her head from injury by throwing out her left hand, to break her fall, but she incurred small fractures in her wrist and in her upper arm. I think this event was fortuitous in some ways because it helped get me ready to help Sharon with her showers (while, her left arm/wrist/ hand were in a cast. Since then, I have had to do a lot of prompting and showing Sharon what to do during her morning routines of showers, dressing, etc.
- Sharon struggles finding the correct words at times to describe what she wants; Her reading had been fine, but she struggled reading the closing out loud at a recent ALANON meeting. Also, she forgets where / what certain things are. For example, I might say to Sharon: “Put that piece of paper in the trash”. And, she does not remember that the trash can is behind the pantry door. Then, if I say, that the trash is in the pantry, she might open the refrigerator door, next to the pantry door.
- For all of 2019 (we started in late Nov 2018), we have attending once-weekly support group meetings at the Alzheimer’s Association . For 1 1/2 hours on Thursday mornings, I go into one conference room, with a trained facilitator, and other caregivers (mostly spouses); while Sharon is in another conference room with a trained facilitator and others living with Alzheimer’s and / or dementia. This has been a blessing for both of us. We get and give much love here.
- Starting January 1, 2019, I cut back working from 5 days (40 hours /week) to 4 days (32 hours /week), per week. I take off on Thursdays to go to the Alzheimer’s support group meetings and for other appointments for Sharon, me, or both of us. I feel bad leaving her at home alone (and, Russell Gainer, the Social Worker, recommends that she not be alone). Therefore, since mid-October, after we returned from our trip up north, I have paid caregivers (chauffers / companions), supplied by https://www.amadaseniorcare.com/north-san-antonio-senior-care/, that come to our home for 4 hour shifts from 10 am to 2 pm., to be with Sharon, while I am at work. I also have someone come from 4:30 pm – 8:30 pm on Wednesdays, so that I can attend leadership training from Coker United Methodist Church / Asbury Theological Seminary, held at Coker.
I hate Alzheimer’s. I hate that it is robbing Sharon, drip by drip, of much of her being; and, I hate that it is robbing me and her family and friends of the best of her.
Friends and family may ask or think, what can I do? You can help with your presence. Offer to take Sharon on an outing with you. Call her. Write to her. She still wants to be with people, beyond me, son Steve, and paid care companions / care givers. This also has the benefit of giving me a brief respite from my care-giving responsibilities.
Sharon has always been and continues to be a COGOPW – a Child Of God and a Person Of Worth. I have the privilege of taking care of her as best I can with the help of caregivers, her family , and friends.
None of us knows what the new year and future will bring….
Nevertheless, I wish all of you reading this: Happy New Year and Happy New Decade! And, may God bless you and keep you; shine his countenance upon you.; and give you peace and encouragement.