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While my 67-year young wife Sharon has been living with Alzheimer’s for 5+ years, I am writing this blog post to mention many of the things that she can still do!
1) Watch, enjoy, and laugh at TV comedies such as: SNL; Laverne & Shirley; Friends; Mim; Three’s Company; and, even the irreverent South Park. I love to see and hear Sharon laugh.
2) Love on our dogs Hank and Hazel; and vice versa.
3) Go out shopping with a girlfriend.
4) Eat out at places like Aldaco’s, Carrabba’s, and Willie’s in San Antonio, Texas, USA. (Sharon is not a fan of Luby’s and fish restaurants like Sea Island).
5) Take short walks.
6) Tap her toes and sing to music that she likes such as ABBA, contemporary Christian, Elvis and more.
Sharon also participates with me in the Grace Notes choir on Zoom every Friday morning. Choir Director Amy sings to us: “Are you ready to sing?” And, we sing back (while muted), “We are ready to sing”, as we ascend and descend the musical scale. 🎶🤓🎶😉
8) Look at videos of kids and babies on her facebook feed. Also seeing smiling kids and babies in person, too!
9) Hang out with family and friends.
10) Go to the hair and nail salons.
11) Enjoy a “healthy” glazed donut, with chocolate icing and sprinkles, from nearby Shipley’s. (Sorry, Susan A. 😉)
12) Fold clothes. I tell Sharon that I should enter her in a clothes folding contest, that awards points for form and speed, because she is so good at it.
13) Make our bed every morning, with each of us on one side. This helps me out, so that I don’t have to keep walking from side to side.
14) Go to and participate in worship and Sunday School at Coker United Methodist Church.
15) Ask me: “What do you want to do?” – or these cousin phrases: “What’s next?”, or “Now what?” 😉❤️🎶
16) Shop with me at HEB grocery store.
17) Show empathy to me and others when we are hurting or sad.
18) Participate in her weekly Zoom call with her peeps living with Alzheimer’s and a skilled facilitator. Sharon laughs a lot during this call. That warms my heart.
19) Play catch with her 9-year old friend Nano at our neighborhood pool.
With the pandemic and Sharon’s decline (due to Alzheimer’s), my life now seems to resemble Mr. Cellophane on steroids.
Sharon has been my best friend since we started dating in 1982 (married in 1983). But, she is no longer able to fulfill all of that role.
I have never made and kept close friends easily. With COVID-19 restrictions on going out-into-the-world, and me being with Sharon almost 24-7, except for going to my job outside the home about 3 days per week for 20+ hours per week, it is even harder for me to have close friends or even friends just to hang out with.
I also had a realization this weekend, that part of my challenge is I am not currently part of a significant tribe(s):
1) Politically, I am more moderate than most people in my life: at church, Sunday School, Emmaus Reunion Group, at work, in the neighborhood, and among friends, such as my Eat-a-Lot friends in Houston, Texas and beyond. I sometimes feel outnumbered and outgunned by all the conservatives in my life and community. Sometimes when we differ politically, it seems like it can be, “My way or the highway.”
My political hero is Abraham Lincoln, who seemed to truly see all / both sides of an argument. he could argue both sides week, too.
2) I am 67, but not fully retired from working outside the home. Most of my friends my age are fully retired.
3) I am not mechanically inclined. I am not an outdoorsman. My Dad taught me a love of books, baseball and more, but not building things or going hunting and fishing – so, I am without a tribe in the outdoors sports arena, too. 😞
4) I act and feel more emotional; and, I am overly sensitive, as compared to other men. I told and wrote some people today that I wear my heart on my sleeve.
5) I had a tribe when I was young with the high school tennis team and other activities, that I enjoyed, and that I was good at. I didn’t keep playing tennis. I’d like to find a way for me (and, maybe even Sharon) to play pickle ball – which I’ve never played, but heard it can be great fun.
6) I had a tribe (and, maybe still do) with being a Houston Astros baseball fan, but I feel being in this tribe is tainted a bit by the Astros cheating scandal. I don’t like that most baseball fans hate my tribe in 2020. (And, likely for many years to come)
7) I did not serve in the military like many of my friends in San Antonio. I graduated from college in 1975 when the military was being scaled back; and there were very limited opportunities for me to join as an officer.
8) Fraternities were not big at Michigan State (East Lansing) in the early 1970’s- so, I don’t have a fraternity tribe.
I played a small roll in 1974-75 in helping to keep the residential college within Michigan State going – by serving as a resident assistant on an all James Madison floor of men on South Case Hall. And, I had the fortune in the summer of 1972, to be a sports camp counselor to a high school student, Sherman Garnett (with whom I shared about my experiences as a James Madison College student), who would eventually become the Dean of James Madison College, and serve in that role for many years.
Also, I do have a bit of a tribe with the Michigan State Alumni group in San Antonio, but those friendships have been limited in COVID times.
9). While I am an accountant by training, and I kept an active CPA license from 1986-1996, I have always been an industry accountant specializing in financial analysis, pricing, contracts, business development proposals, and such. So, I don’t have a CPA / tax accountant tribe.
10) Even in my own family, I have not had a tribe for most of my adult like because I moved from Michigan to Texas in the early 1980’s, during my late 20’s, while my brothers live in California and Colorado; and my sister lives in Nevada. Also, one of my two adult sons lives in Las Vegas. My first cousins are all over: New Hampshire, Georgia, Arizona, and California – but none in Texas.
11) I am blessed to have a bit of tribe on social media, especially on facebook, that follow and appreciate my sunset photos; and, posts about Alzheimer’s; Sharon; baseball; and occasional observations about life. These folks are super loving and supportive, but it is not the same as friendships in the flesh.
12) I don’t have a YaYa Sisterhood group, like some female friends I know. Sharon doesn’t have that either; and, while she can’t voice it articulately, she misses that in her life, too.
13) When I served in leadership at Bible Study Fellowship, I had a tribe there. Last Year (2019-2020), I had a tribe with my Coker Leadership Institute (CLI) / Asbury Seminary was small group. I have a tribe with my Emmaus Reunion Group, but it seems my political views (see #1) strain my relationships a bit with these gentlemen.
14) Sharon’s family, all in San Antonio now, are an in-law tribe, but that’s not not the same as having a tribe with my siblings and sons.
15) While I am grateful for all I do have, I am not as well off financially as many of our friends. Even before Sharon’s Alzheimer’s, this sometimes limited us from taking trips with friends outside of the United States. COVID-19 has been a bit of great equalizer now, with almost no one traveling as much as they want, I sincerely hope that my friends will soon be able to travel. 🎶 The world will open up again…. 🎶 🤓🌏😎
16) I am also a member of some support groups (Alzheimer’s – for me and Sharon) and recovery community tribes (New Choices
Family Support Group and North Loop Alanon Family Group, AFG), but again it is harder to connect on Zoom than in person.
“Any who”, I want to work to become more connected with the tribes I already have, even if it is not in person.
I am also reminded of the Groucho Marx line: “I refuse to join any club (tribe) that would have me as a member.” 😂😉
Possibly, part of my destiny in life is to be a counter voice with my conservative friends who belong to many of my existing tribes.
Not really feeling part of a tribe can sure be lonely sometimes. 😞😉
What tribes are you in? Which tribes are important to you?
Well, this is my first blog post in five months. I published my last one on March 2, 2020, about 10 days or so before the effects of the COVID-19 pandemic hit San Antonio; Texas; and the United States.
A lot has stayed the same for Sharon and me. And, a lot has changed!
Before the pandemic, Sharon wanted to be out doing things: visiting her Mom, dining out with friends, and going on mini adventures. Since the pandemic, she still wants to be on the go. Unfortunately, I have to often answer that we need to stay home because of the virus.
Sharon’s favorite questions to me are:
What’s next? (What will be doing next?)
Where is Steve? (Our eldest son Steve lives with us)
I think she asks “What’s next”, in part because she wants to be doing things. Also, I think when I tell her what we will be doing next, it gives her some sense of security. Otherwise, “what’s next” might be a bit fearful or foggy.
Steve is at home a lot. When home, he is usually in his room upstairs or in the garage working out. I try never to answer Sharon with: “I just told you that Steve is in his room”….
I have shared with some of you, that for quite a while now, Sharon often cannot distinguish objects / nouns. She might be sitting next to these items: TV remote, iPhone, Diet Coke bottle (plastic), and a napkin. I’ll say to Sharon: “Hand me your phone”, and she does not appear to know what I am asking, unless I touch it or point to the item (when I am very close to it). Sharon hears me fine but, her mind is not able to process what I am asking her to do. This makes me a bit sad, but it is part of our path along our Alzheimer’s journey.
We are enjoying swimming in our neighborhood pool this summer. Sharon loves to see other people, especially children playing, on our visits there. She continues to look forward to seeing her friend Nano, a 9-year old boy.
Sharon laughs a lot at videos of kids / babies that she comes across on her phone, while looking at her facebook feed. Sometimes she talks to the babies and kids with statements like “it’s going to be all right”, if she sees a baby crying.
Sharon also laughs a lot at TV comedies such as Saturday Night Live (SNL), Friends, The Neighborhood, and Bob Loves Abeshola. Sharon laughs a lot during her weekly support group for those living with dementia (listed in the meetings below).
Another negative is that the pandemic has shut down home visits from friends. We were just getting those weekly visits going with several friends when the pandemic hit.
A positive during the pandemic is that Zoom and BlueJeans has kept us connected with others on a regular basis:
Adult Sunday School class
Recovery groups – Alanon and New Choices
Emmaus Reunion group (Michael)
Alzheimer’s support groups for me and Sharon
Coker Leadership Institute / Asbury Seminary leadership class – that I graduated from in June 2020 – the last 4 months being almost entirely on Zoom
Family (but, not as regular as I would like to see)
My prior experience on Zoom in the Spring of 2019, when I transitioned from in-person Bible Study Fellowship (BSF) to Zoom, to be at home more with Sharon, helped me get a head start on setting up Zoom meetings for Sunday School, Alanon, and Emmaus reunion groups.
Sharon does best 1-on-1. In groups, it is harder for her to find her voice. When you meet with Sharon 1-on-1, don’t ask her questions. Rather, share about you and your life. This is the best approach to get Sharon to open up about her life.
Thank you for reading this blog. Blessings to all of you.
It is Sunday, March 1, 2020; and, I feel blessed as I enter the third month of the “new” year.
Sharon and I continue on our Alzheimer’s journey together.
February was largely a good month for us:
1. We continue to settle into our new normal. We have pretty good routines in the morning, during the day, evening, and at bedtime.
2. I continue to work 4 days per week: Monday, Tuesday, Wednesday, and Friday. I usually leave for work in Boerne, Texas, between 7 and 730 am, after helping Sharon get ready for the day and serving her a light breakfast. I am usually home by 5:00 pm. Sharon is generally a little sad and worried when I leave her for work. (Our adult son Steve is often at the house, but he is sleeping in the morning, from working overnight). Our two dogs are there too – for Sharon to love on and vice versa.
3) Sharon’s regular paid caregiver, Valerie, arrives around 10 am and stays until 3 pm on Mondays and Tuesday. On Friday, she arrives at 10 am and stays until 2 pm. Valerie helps Sharon have a lunch late morning each of these week days. They do activities together, such as light housekeeping, visiting, exercise, and watching television.
Our son Steve generally helps Sharon, starting early afternoon. There is sometimes a little overlap with Steve and and a caregiver / friend.
4) On Wednesdays, I work from about 8 am – 4:30 pm; then, I head to my church (Coker United Methodist Church, UMC, in San Antonio). I have dinner there; then attend a leadership / small group class from 6:30 pm – 8:00 pm. I arrive home about 8:30 pm. Valerie is not available Wednesday mornings. The last couple of weeks, Ann (a friend from Coker) has spent time with Sharon from 10 am – 2 pm or so. Ann helps Sharon with lunch, plays games and visits. Then, at 2:30, Valerie arrives and stays with Sharon until 8:30.
5) Thursdays, when I am off work, we attend the Alzheimer’s Association support groups at their San Antonio office, from 10:30 am to Noon. This support group has been a blessing to me. I have attended it since late November 2018. Unfortunately, one of the members in this group, recently lost her husband to Alzheimer’s. Sharon and I will attend a memorial service (and, to celebrate his life) for him on March 13.
We accomplish errands, appointments, and visiting on Thursday afternoons.
6) I feel blessed because, based on previous facebook posts / blogs, several people in our circles have reached out to offer help, especially offers (and, actual visits!) spending time with Sharon. She does best in 1-on-1 situations, woman-to-woman. With 3, three, (including me and / or Sharon) or more persons present, Sharon does not talk much. But, she is much more engaged when it is just her and one other person!
7) We are blessed because several friends write to and send cards and letters to Sharon regularly. Thank you Shirley, Ginni, Tina, Monday Morning Bible Study, and others! Please keep those cards and letters coming.
8) I feel blessed that my employer, COI, is patient with my schedule, while allowing me to contribute meaningful work.
9) Sharon had a an amyvid PET scan last week. We meet with her new neurologist at UT-Health’s Glenn Biggs Alzheimer’s Institute, San Antonio Texas later in March to discuss the results. Meanwhile we have been blessed from sessions with occupational and speech therapists that Dr. Zilli referred us too.
10) We went country western dancing on Feb. 15 at Braun Hall, San Antonio. What a fun time with Kris and Steve. We look forward to more of this in the future with Kris and Steve, and other former co-workers of Sharon’s at Baptist Hospital / Risk Management and Quality Control.
11) We had a very nice, impromptu lunch after church today with Charlie and Laurie. Thank you guys!
12) We had a fun lunch yesterday with Sharon’s Mom Dorothy and her sister Trudie. Then, we enjoyed more good family time with additional family members at Dorothy’s home.
13) We plan to visit Grace Place on Nacogdoches next Thursday, March 5, to see if Sharon could do some volunteer work there, while engaging in fun activities and fellowship. This could possibly take the place of some of the in-home care-giving, but it presents some logistical hurdles￼ for me, such as dropping off and picking up Sharon, while working in Boerne, 30+ miles distance between Grace Place and my work in Boerne, Texas. Is there anyone available to help me with transportation for Sharon?
I’ll report more about Grace Place next month, in this blog.
14) Our friend Michelle is helping Sharon and me create memory books, using old photos.
15) Sharon was a skilled RN, for nearly 40 years of working. When we met and fell in love in the early 1980’s, she worked with famed heart surgeon, Dr. Denton Cooley. One of Sharon’s patients was the Prince of Bahrain. Sharon also served with Dr. Cooley and others for seven months training Dutch medical personnel in The Netherlands, circa 1980.
16) Thank you Melissa for visiting and taking Sharon on shopping errands with you Thursday afternoon.
17) We traded in Sharon’s Honda Odyssey minivan for a used, 2018 Nissan Rogue – a small SUV. We both like it.
Well, March 2020 came in like a lamb (not a lion) in San Antonio. And, our Alzheimer’s journey came in like a lamb too. I hope that our journey continues lamb-like in March and beyond.
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.
Most weekdays I leave our home to drive to work. And, usually Sharon makes our bed, after I have left. And, I appreciate her generosity in doing this.
During the past week, I found the bed like the first photo, on a couple of occasions. Sharon had almost everything perfect. But, she missed pouring the two large pillows, with pillow shams, on the bed (second photo where I added them when I got home from work).
I am not posting this tidbit to complain about Sharon’s bed-making skills; but, rather, I write about it to show, how drip by drip, the effects of Alzheimer’s are changing Sharon’s thinking and behavior.
This is part of our new normal.
Also, this past week, she did not eat well while I was at work. She eats best when I prepare meals for her, and/or we work on them together.
Further, for the last several weeks, I usually help Sharon figure out what outfit to wear each day.
In all professional sports, except Major League Baseball, the winning and losing teams shake hands; congratulate each other; etc., after a playoff series (often during regular season games too) is decided.
Not Major League Baseball. The winning team will congratulate each other on the field, but the losing team stays in their dugout and/or heads to the clubhouse.
Let’s change that in 2019. What do you think?
How can we get Major League Baseball to start a new tradition in 2019?!
I had the privilege to attend Sunday evening a reunion of the Celebrate Band and Service, from Coker United Methodist Church, at Brad and Linda Hickman’s home. This 11:00 a.m. Sunday morning Service ended at Coker a couple of years ago. Thus, it was great to attend a revival of the service with fine music, inspirational words, and receive Holy Communion this evening.
I have inserted a video of part of one of the song’s at the service tonight. Enjoy (if I can get it to upload okay)!