I’m glad my Mom doesn’t understand what happened yesterday the US Capitol. I wish I could forget it. At first I felt physically sick watching the events unfold on tv, and when I thought about my Mom who was always anxious, I know that if she didn’t have dementia she would have been terrified. Then at 2pm yesterday when I got off from work I was a little afraid, as I needed to leave my home and drive the 24 miles to Tysons Corner, VA for my final appointment with my endocrinologist of more 25 years. Dr. Tanen joined my team of eight doctors in 1995 who were in the middle of the thirteen year battle to save my life. I had already had 15 surgeries by then and Dr. Tanen’s primary role at first was to remove several nodules from my thyroid without surgery. We used to laugh about the fact that my thyroid is one of the few organs I actually have left. He was the youngest member of my medical team and we were the same age. Over these 25 years we also became friends. Yet, I almost cancelled my appointment yesterday because as an African-American I wasn’t excited about leaving my home with the chaos going on in DC.
I went and I’m glad I did. He was the last member of my medical team still practicing medicine and we had an amazing visit. I’m grateful for the role he played in my life as part of Team Loretta! He had a fabulous bedside manner, never made you feel inadequate for asking questions about your medical care and is just a wonderful person. When he closes down his practice in March, I hope that he and his family thoroughly enjoy retirement. They certainly deserve it.
When I returned home, the chaos was still occurring in the Capitol in DC. I was exhausted, felt physically ill and I cried. Last night at 8:30 pm I attended the nightly virtual prayer service at my church, St. Mark’s Episcopal Church Capitol Hill, which I also help lead a couple of times each week. That service always prepares me for rest and a peaceful night, but last night that inner peace was hard to come by. Peace was eventually restored at the Capitol of course, but yesterday will be etched in our history forever. Yesterday was only one of a couple of times I actually wished I had dementia so I could forget what we all saw.
I had a lot of goals for the days before and after Christmas but none of them actually involved opening presents or visiting others. Because I knew I couldn’t spend time with Mom on Christmas day because of COVID and we were supposed to socially-distance from family we didn’t live with, I’d psyched myself up just to deliver my gifts and keep moving, coming back home to work on all of the goals I’ve been setting for my business for 2021. Turns out the day had some unexpected Blessings! I received a gorgeous photo blanket from my bestie Kris that captured my almost 35 years with Tim. I got to see Mom walk again from the table to the door, strolling as if she was walking through the park like we used to do. I didn’t get to see her open her gifts, but the visit still meant everything!
When I got to the house to see my daughter and granddaughter, my plan was to stay long enough for them to open their presents. I gave my granddaughter a pink and purple Jeep and a table and chair set for her treasured doll Luciana.
I gave my daughter a motivational wall hanging on believing in your dreams. I also gave the kids a gift that was 25 years old but had never been opened. It was a souvenir Tim and I bought in 1995 in Australia. It’s an orange and blue tea towel that was made by an aboriginal woman. Tim loved her stand of kitchen towels, wall hangings and pot holders. Tim purchased his favorite one, and I had forgotten all about it until found it while purging stuff a few months ago still sealed in the original package. I took pictures of it and then resealed it. After some research I learned that today that women who was selling items at a stand on the roadside is now a huge contributor to a gallery of Aboriginal Art in Sydney. I hope the kids use it well in their kitchen.
They loved all of their gifts and I ended up staying for dinner which wasn’t in my original plans. After a wonderful rib dinner with veggies, cornbread and lemon meringue cheesecake, we watched the Disney movie Mulan, and it was truly a girl power inspirational movie. So many delicious and inspirational Blessings in one day.
Meanwhile, the work on my speaking business has gone incredibly well. I’ve been in my house since Christmas day and will be here all this upcoming week continuing to work on all of my goals. I’ve made new presentations, updated my website, written entire speeches, and created specific LEGO Serious Play programs for caregivers that I am thrilled about. I feel incredibly Blessed. My website is now titled – Loretta Veney Inspires, a phrase so many people have used to describe me over the years. My new tagline is Loretta inspires caregivers to move from “I give up” to “I’ve got this”.
Like almost everyone I know I’m looking forward to 2021 and though I have rarely stayed up until midnight in previous years, I’m going to stay up this year to make damn sure 2020 leaves! I’ll likely cry a lot too, for all the people who have died or are sick from COVID, for all of the health care workers who have given every ounce of themselves to save lives, for all who are unemployed, without a place to live or who are alone. There is so much fear, grief and uncertainty in this world today – but I pray that over this last week of 2020 we can all find at least a few Blessings to hang on to from this year. Mom and I wish all of you a happy, healthy and prosperous 2021, and I thank you all for helping me survive the nightmare also known as 2020.
I’ll be alone for most of Christmas Day and that will be perfectly fine because I received the best gift ever today so I’m already completely fulfilled. I not only got to see Mom through the glass door, I got to witness something I didn’t think I’d see again!
To rewind back to this summer, Mom had three seizures, a fall that resulted in a broken clavicle and four broken ribs, and two hospitalizations. She was so weak by mid-summer that even after physical therapy she could barely stand by herself.
Because she can’t follow directions due to her dementia, the physical therapist wanted to stop working with her after 10 sessions even though Mom was approved for 18. I insisted that they finish her sessions even if they thought it was a waste of time. I’m never going to let anyone give up on my Mom! I spent weeks in early fall working to get Mom a wheelchair so we could do our best to keep her from falling again.
After Mom’s physical therapy ended, Janet worked very hard to help her regain her strength. So TODAY when I arrived she got up from the table and walked to the front door by herself with Janet following very closely behind her. Janet had called me on Tuesday to share that Mom had started to walk on her own again and I was really excited, but to see it for myself today was priceless! She not only came to the door, she tried to open the door to come out!
I never really expected Mom to regain her strength to this degree again, BUT it is proof as to why you should NEVER give up on someone with dementia. It’s why I only focus on all the things Mom can still do! No gift I might receive on Christmas could top the gift I received today! Who knows what tomorrow will bring, but today was pretty great! Love you Mom! Thank you Janet!
This week was indescribable! Not only was it the week for my huge quarterly class at work, but I was also expecting my new bed to be delivered, I had two presentations and one board meeting after work and my contractor was supposed to finish up the work he was doing on my patio and sunroom.
All of that was manageable. The thing that was most scary about this week for me was the fact that yesterday was supposed to be the best caregiver on earth’s last day at Lifesprings Eldercare. Her name is Janet Wright. I met Janet in November 2018 when Mom moved to house #2 of Lifesprings. I didn’t know it then, but she was new to that house just like Mom, and they bonded immediately.
No matter when I visited, which was OFTEN, Janet was in control. She seemed to know every resident’s medicines and likes and dislikes by heart. She knew how to soothe each resident, how to calm them and how to entertain them. I was always in awe of her! She and I also hit it off right away. I always looked forward to seeing Mom at Lifesprings, but also seeing Janet. We’ve been through so much together – Mom getting out of the facility and falling down at the end of the end of the block last year, her three seizures, two hospitalizations, four broken ribs and a broken clavicle this summer.
Whenever something happened to Mom, Janet felt it as if it was happening to her or her own family. She cried when I went to the facility in person to tell her that Mom’s fall earlier that week resulted in the broken ribs. When Mom came home from the hospital she was not the same. Her legs were weak and Janet single-handedly coaxed and coached Mom to her current stable condition. Janet even checked on Mom one night at 2am and found her oxygen levels were low and called 911. Who gets up in the middle of the night to check on residents? If it wasn’t for Janet, Mom wouldn’t be here.
A few months ago I found out that Janet’s husband is on dialysis and needs lots of care himself. I wondered how she could be so focused on the Lifesprings residents when she had a very serious illness in her own family. Right around the same time Mom was hospitalized, Janet’s husband was too. Janet lives an hour away from Lifesprings and after her husband’s hospitalization she began to look for a position closer to her home and her husband. She shared that information with me and I was cheering for her to be closer to her home and family. The possibility also terrified me. It was Janet who got Mom and all of the other residents through the four-month COVID lockdown unscathed! Who was going to take such great care of the residents and give them their all like Janet did? Given her amazing skills, Janet found another position very quickly. She was originally scheduled to leave Lifesprings on Oct 17th. My heart started to beat fast as the date approached. As the weather is getting colder and our backyard visits end, I couldn’t help but think that without Janet, will Mom still be here at the end of the winter?
No replacement was found by the 17th so Janet changed her departure date to Oct 30th. She spent time training a couple of people but knew that neither of them would be suitable for Lifesprings. I was sooo happy for Janet that she’d found a job walking distance from her home with a better salary. I got a beautiful thank you card for her from me and Mom and tried to prepare myself for her last day.
And then a MIRACLE! Janet ended up turning down the other job to stay at Lifesprings. She told me she LOVED THEM TOO MUCH to just leave them with anybody! And her husband approved! I cried when she said that and even now, my feelings are all over the place!! I’m relieved and feel so Blessed that our guardian angel will still be providing phenomenal care to our loved ones! But I’m also sad that this amazing woman sacrificed her own family to stay with ours. I’m not going to take her staying at Lifesprings for granted! I plan to continue to tell her how important and valuable she is to our loved ones AND to US! I hope you are fortunate enough to know a caregiver like Janet who gives their absolute all every single day! Not everyone is built to be a caregiver and there is no question that only a few are ONE IN A MILLION LIKE JANET!
While our lives continue to be filled with stunning news on a daily basis, I came to Chincoteague Island VA to chill out (socially-distanced style) with my RVing Women sisters and to hopefully cross something off my bucket list. Having never seen a rocket launch other than on TV, one was scheduled to occur this weekend from NASA’s Wallops Island a few minutes drive from where we are staying. Originally scheduled to launch on Thursday night, the countdown got all the way down to T-2 minutes before being aborted. But last night was different, and at 9:16pm we all stood in awe as we watched from across the island a huge orange ball light up the sky and head towards heaven. It then turned towards us and literally came right over our heads causing the ground to shake!!! It’s hard to describe how incredible it was unless you were there! I cheered along with the crowd and prayed that Tim was watching from heaven since we tried several times without success to see a space shuttle launch in person! I pray the rocket arrives safely at the space station to drop off the 8,000 pounds of supplies it was carrying!
Then this morning I was able to cross off another bucket list item, to ride a bike more than 10 miles, including riding off the beaten path! At 7:30am my friend Sue and I headed down to the Chincoteague National Wildlife Refuge, riding on paved paths, gravel, rocks and sand along the way!! It was a brisk morning with bright sun and I can’t imagine a better day for our trek!! My favorite part was the trail that took us down a path that was so narrow we had to get off our bikes and walk. When the trail opened up again, we found ourselves alone at the beach and we both stood there marveling at how lucky we are to make these God-given discoveries. I knew that like me Sue always traveled alone to the RVing Women events, but I didn’t know until today that she too is a widow. We stopped for coffee, donuts and cinnamon rolls on the way back to the campground and I truly needed the rest!! Whew!! Our total for our adventure was 13 miles! Another bucket list item gone! I’m thrilled with my bike I bought at the last camping trip and I’ll keep on riding to new places!!
The one thing on my bucket list I still can’t cross off yet is for a cure to be found for Alzheimer’s disease. It continues to take more of my Mom each day! In the last week her legs have started to shake badly, she doesn’t want to move her legs forward to walk and most concerning is that she’s starting to forget what to do with the meals placed in front of her! Anyone who knows my Mom knows how much she LOVES to eat, especially dessert!! So when I was told that she has to be promoted to eat and sometimes need assistance, it’s becoming crystal clear that she’s losing more of her brain function as each day passes! I’m going to keep praying for the day when my bucket list item for a cure for Alzheimer’s can be crossed off! I’m smart enough to know it’s increasingly unlikely that it will occur in time to help Mom, but will certainly help millions of others! In the meantime, I’ll continue to show Mom all the pics I take and the stunning things I’m able to see and experience so she can experience them with me! Every now and then when she sees something she likes she can still say Wow!! I hope the photos and video clips I’ve taken this weekend, especially of the rocket launch will bring about one more WOW from Mom when I see her next! Even through our masks and sitting six feet apart we can still enjoy adventures together and I thank God for every day we have left to do that!
Stay well and safe my friends! Let others know you love them every chance you get!
Mom had not been the same since coming home on July 5th from her hospitalization for a seizure. She was very weak and had just started physical therapy on July 21st in attempt to build up her leg strength. Thankfully, one thing that wasn’t damaged or weakened at all from that seizure is her incredible spirit … When she says “Oh Hello!” when you walk in or “Thank You”, for something you’ve done for her, you feel her authenticity and warmth in your entire body. She smiles through whatever is happening and it warms your heart. Everyone loves my Mom.
The start to this week took an interesting turn on Tuesday. Mom lost her balance that morning due to her weakness striking her left shoulder, but thanks to her great caregivers she didn’t hit the floor. As the day progressed a huge bruise appeared and I was asked to take her to Patient First to get an Xray. It was a struggle getting her there and back due to her weak legs, especially holding her up for the Xray but we did it. We were told by the doctor on duty that nothing appeared to be broken and we were relieved. But then came Thursday. First thing that morning Mom had another seizure which was really concerning, but the caregivers and I had a virtual appointment with a neurologist who gave us instructions to hopefully end the seizures once and for all.
Later Thursday morning I received a distressing call from the Patient First radiologist that his review of her Xray revealed that Mom’s left clavicle was broken! I was shocked and very upset, but followed the instructions I was given to call an orthopedic physician near us. I made an appointment right away but was worried about taking Mom given all the trouble I had getting her to Patient First, and she seemed to be getting weaker by the day. I made arrangements for my favorite caregiver Janet to come to the orthopedic appointment with me, and I felt great that all would be well since there’d be two of us assisting Mom and we’d have a wheelchair with us too. What could go wrong?
That answer came Friday morning when Janet called to alert me that something seemed “really wrong” with Mom and that she didn’t think we should try to take her to the appointment. I rushed right over and Mom now had a huge knot on her chest under her neck, her eyes looked really sick and she seemed to be taking deep breaths and was moaning slightly. The best decision we made was to call the ambulance for her. They took Mom back to Southern Maryland Hospital where she’d been on July 2nd. I spoke with a fabulous Doctor who told me that Mom’s oxygen level was low so they had put her on oxygen and were going to do a full workup on her to get to the bottom of what was going on. She said Mom was so nice and polite and she was happy to be working on her case. She told me she would call me back in a few hours after all the tests were done.
Instead, I got a call back from the doctor in just 90 minutes, and she sounded a little more serious than she had in our previous conversation. She said, “so your Mom has four broken ribs and we are going to transfer her to Washington Hospital Center where they can deal better with this kind of trauma”. I said “WHAT??” and she repeated it. I asked if this was serious? and she said “YES, there is fluid building up and her lung capacity may be damaged so she needs to be seen by the trauma physicians to determine if she needs surgery”… I asked “did you say surgery?” I’m nearly hysterical at this point. She calmly said “we will take great care of your Mom while she’s here I promise you”. I said ok and immediately started to cry. I felt horrible that I didn’t understand how injured Mom was from Tuesday’s incident, and worried that she’d be alone AGAIN in a hospital because of COVID. When I went to give the news to Mom’s caregivers at the group home, they were devastated! It was a really sad moment!!
Mom easily made the transition to Washington Hospital Center and based on their protocol for broken ribs at her age of 91 she was immediately put in the ICU. I didn’t hear a word Friday night but was assured that the Trauma Team would call me. We finally talked around 7am on Saturday morning. They gave me the great news that Mom was delightful and had no problems during the night. The night nurses took turns sitting with Mom and they loved how she made them feel special when she said “thank you” for any little thing they did for her. I was proud. I was told that due to her age and the fact that she didn’t seem to be in too much pain, that they weren’t going to do any surgery on her. Nurse Lexi sat with Mom several times during her shift and played music for her. They absolutely loved Mom’s spirit, and though they were glad to see her leave the ICU they were sorry to see her go.
When Mom was moved out of ICU, Nurse Lexi went with her to ensure she got all settled in her new room. The new nurses loved Mom just as much as the ICU nurses. One of my friends said to me this morning “everyone loves your Mom!” and that’s an understatement! I always say that Mom is a rock star! I hope she won’t be in the hospital long, and I still have concerns given that Mom can’t follow instructions well enough to do the breathing exercises she needs for her lungs. But I also believe in silver linings. One of the things Nurse Lexi said was that “Mom’s kindness made her day” and that they hadn’t had a patient as delightful as Mom in a long time. The silver lining for me is that even in her now late-stage dementia, Mom can still share her great spirit with others. She’s calm and relaxed (even when apparently in pain) and when she smiles she can still light up a room.
Not even a broken clavicle and four broken ribs could dampen her kind heart and her spirit. Even on the worst of days she has no fear because she no longer knows what fear is. All she knows is that she’s “doing fine, thank you” whenever she was asked how she was by the doctors and nurses. As ugly a disease as dementia is, I’m grateful that the one thing it has not robbed my Mom of as of yet is her ability to make someone else’s day better, and at two different hospitals! And that’s why everyone loves my Mom, especially Me!! Get Well Mom, I know they want to keep you in the hospital but we can’t wait for you to come home!
My RV named JOY weighs 10,960 pounds. I had her weighed for the first time this weekend as I headed out on my camping adventure to ensure that she was not overweight. I was carrying a full load of stuff with me this weekend as I always do, including a full refrigerator, a full tank of gas, a full tank of propane, and a 3 gallon jug of fresh water. I had never (nor had Tim and I ever) weighed an RV. Last weekend I watched a YouTube video on how to get JOY weighed at a truck stop. I downloaded the required APP and then drove JOY like a pro onto the scale at a truck stop 29 miles from home! I was surprised that it went like clockwork, as I’d been really apprehensive about doing this amongst a sea of huge tractor trailers. But when I arrived before noon on Friday, there was no line and it was even easier than the video indicated. I was relieved that I’m not close to the maximum weight of 11,500 pounds to drive JOY safely. I now know I can bring along a couple of family / friends and all their stuff with no problem.
I’m writing about this because as I got JOY weighed it struck me that I’m not only driving around a huge weight, I am also (along with many of you) carrying a lot of weight around too! Right now, all of us are feeling the weight of it all and some of us may be close to the breaking point!! There is the COVID pandemic continuing to run rampant, racial unrest, economic upheaval as states open and close as the pandemic dictates, and the thousands of folks of who are lonely, sick, dying or grieving! Just so much (too much) for us to carry right now!
I came on the camping trip with my RVing Women sisters in spite of COVID because I was staying within my home state of Maryland and I knew we’d all be wearing masks, refraining from our customary tight hugs and maintaining social-distancing as required. I needed this trip because July 17th was the fourth anniversary of Tim’s death, which of course occurred while we were camping in NY. Some of my friends are surprised that I still enjoy camping after Tim’s death, but others understand that being in a campground and out in nature is what fills my soul as I continue the dream Tim and I had of seeing this entire country! I also came because I knew that home was probably not the place for me this weekend, and that my RVing Women sisters would help me carry the weight of my grief over Tim and my sister’s deaths, and my continued worry about my Mom’s weakness after her seizure on July 2nd.
Coming on this trip is the best thing I could have done for myself! As soon as I arrived at the campground I got a call from the Physical Therapist who was going to assess Mom and arrange for her in-home PT for the upcoming weeks. Because I was out of town, I gave Janet (World’s Best Caregiver) permission to sign for me, giving consent for Mom to be examined. Thankfully Mom’s PT will start next week giving me one less thing to be concerned about!!
I also knew that after several COVID-caused cancellations of our camping trips my RVW sisters would lift me up and relieve me of some of the weight I’ve been carrying. And help me carry the weight they did! I arrived at the campground and immediately received a motivational plaque from Nancy that says “Find Joy in the Ordinary” something I always try to do! I can’t wait to hang it in JOY!
After a Facebook post last week where Kathy shared photos of a family soup recipe that looked absolutely delicious, I jokingly asked if she delivered. Turns out Kathy and Sandy DID deliver, bringing me two containers of the soup – one to eat this weekend and one to freeze and eat later! What a thoughtful thing to do, and the soup was Awesome!
Since we can’t have our usual dinners together right now, for dinner on Friday night I was invited to eat with Laurie, Marsha and Sandi and the company, food and conversation were all fabulous and we maintained social distance around the picnic table throughout our dinner!
On Saturday the group did a toast to celebrate Tim’s life and my joining RVing Women after his death. I was blown away by the sincerity and love of the toast, all for a man they’d never met. We usually have at least one new member or guest at each rally and one new member named Mel and I had an instant connection. We are both traveling alone so Saturday afternoon even though it was hot we walked in the shade all through the campground, even taking hiking trails off the beaten path that neither of us would do alone…It was magical! After our trek, Mel treated us to snowballs and root beer floats from the camp store which was PRICELESS! We sat on the camp store’s porch and enjoyed our treats and deep conversation. Another RVing sister to make memories with and share our life journeys.
Late Saturday afternoon the NBC Online article about the impact Coronavirus is having on caregivers that Mom and I were featured in was released. I’m proud that the articles continue to focus on caregivers and all of the weight and worry that can go along with that role. The response to the article was overwhelming and immediate. People have been texting and calling me from everywhere again confirming that the work I’m doing is important and that I speak for so many other caregivers who are also on this journey.
On Sunday morning I did my final walk of the weekend, going down to the lake where there is a huge cross in the middle of the wide-open space. I had my own church service, especially giving thanks for this restorative weekend, and for the life and work of Congressman John Lewis. It was just me and a few swans, buzzards, frogs and fish. My RVW sisters helped me right up until the minute I was leaving for home. Several of them heard a clicking sound coming from JOY as I drove in on Friday, so Laurie and Sandi actually ran behind JOY as I drove slowly in attempt to determine what the sound was! Are these women amazing or what? It was determined that it was just a rock rattling in my hubcap and would likely work its way out on the way home. As I drove off in JOY, I felt so much lighter than I had been on Friday, as if a huge amount of weight had been lifted off of me. I credit all of my friends and being in nature for the change I sorely needed.
We all need people to help us carry all the weight the previous five months have put on our shoulders. In addition to my RVW sisters I know that God and Tim were with me the entire weekend and the photos of the orange sunset (Tim’s favorite color) from Friday night, and my walk early on Saturday morning was all the proof I needed of that… The glorious sunset followed by the trees shining from a beam of sunlight reminds us that we are never alone on our journeys.
I hope that we all continue to find people and things that will help us carry the weight until the current crises have abated. Who is helping you carry the weight of the issues we are currently impacting you? I hope you have some “go to folks” who can listen when you need to vent, support you when you cry, and make you laugh when you need it. And don’t forget to pay it forward and reach out to others who may need help with the weight they are carrying too!! Let’s make sure that none of us falls down under the Weight Of It All! You never know when you can be a beam of light and sunshine for someone else. Sending you all light and love!
It’s been a long 6 days filled with worry and sadness, followed by overwhelming joy after Mom’s really scary seizure last Thursday resulted in a four day hospitalization which ended on Sunday! I was almost hysterical because I wasn’t able to see her at all while she was in the hospital due to COVID. But fast forward to today and it was all sunshine and a couple of moments of true clarity for Mom.
I had been a little worried about taking Mom to the doctor today for a checkup following her discharge from the hospital because she is still a little weak from her ordeal. But once we got her in the car it was all smooth sailing. When we got about half a mile from the group home Mom said “it’s pretty out here!” followed very closely by her favorite saying “Our Lord and Savior Jesus Christ” which she’s been saying constantly for almost a year now. Acknowledging the pretty day and Our Lord and Savior together works for me and immediately reminded me of how the two are inter-connected.
When we got to the beautiful new Medical Pavilion where our beloved Dr. Idoko had moved to at National Harbor (we had to investigate where she had gone when she left her previous practice) the staff met us in the lobby to take Mom up by wheelchair while I parked the car. They made us feel like family and reminded me that I’m not in this alone in this journey with Mom. If you ask for help when you need it, great things happen even in the midst of a pandemic.
One of the questions you hear people asking each other all of the time for the last 110 days is “how are you doing?” Many people say “I’m OK” or “I’m making it” even when they really aren’t OK. Today when Dr. Idoko walked in and greeted us with that Passion and Joy she has for being a doctor, it validated why I made the search to track her down (doctors aren’t allowed to recruit patients to their new practice as they are leaving the old one).
She asked Mom “how are you today Ms. Doris?” and Mom replied “I think I’m still here!” The doctor and I both chuckled, but as I sat there while she examined Mom it struck me how profound a saying that is for the times we are in. Some days we aren’t really sure we are still here! We feel great some days, and horrible on other days. We think the pandemic isn’t real, but we pinch ourselves as we try to remember our lives before March of 2020 and rediscover that this is no dream, but a daily nightmare with numbers that keep rising. Dr Idoko and I not only assured Mom that she was still here, but that she was deeply loved too!
I never underestimate the things Mom says because for me, there’s always a message in there. She’s been through a lot this past week, and much of it alone in a hospital bed. She was missed terribly at the group home by her primary caregiver Janet and all of the residents and definitely missed by me. She’d also become a favorite with all the nurses at Southern Maryland Hospital who weren’t in any hurry to send her back to the group home Sunday afternoon! I was so grateful to all of them because with COVID running rampant I worried aloud if she’d emerge from that hospital room. But emerge she did and when our appointment was over this morning, there was Janet to get Mom safely back inside the group home!
One of the blessings right now for anyone with dementia is the fact that they have no idea what a pandemic is nor the devastating effect it’s had around the world, especially in this country. Knowing my pre-dementia Mom, she would be very afraid of COVID. So I think her response to “how are you doing?” is soooo appropriate. The next time someone asks me how I am, and I’m not really feeling OK, I may just borrow Mom’s response and say “I think I”m still here!” Given all the prayers and response we received during Mom’s latest crisis I know that someone would remind me that I AM still here and that I am deeply loved. Many of you know my family is pretty small at this point, BUT the number of people who love and care for me and Mom (some of whom I’ve never met in person) feels HUGE. I love you all and am grateful for how you hold me and Mom up on the days we really don’t really feel like we’re here!!
On March 20th as cities and states began to lock down from COVID 19, I gathered up all my belongings at work and came home with my work computer to begin teleworking for the first time in the 7 years of my employment. I was the last one on my floor to leave that day and as I looked around at all the empty offices and desks I wondered if I’d ever return there again. The answer to that question is still up in the air. As soon as I set up my home office I began my Coronavirus Journal to track my milestones and the lowest points of my lockdown adventure.
Now on the 100th day of working and being home ALONE, I’m loving it. There are no distractions and my work production which has always been very good, has increased dramatically. I could work at home forever! That said, the two hardest things about being alone are the nights which are horribly lonely, and not seeing my Mom. Thankfully yesterday on June 26th after 97 days of seeing her only through a glass door, I got to spend time with Mom outside in the backyard. We played ball and read a book and even 6 feet apart from her I felt like 100 pounds of bricks had been lifted off of me. I believe that when all families think back to March when facilities locked down, they were afraid that they’d never see their loved ones alive again as COVID raced through many senior facilities. I was terrified by that possibility!
Looking through my Journal today the lessons I’ve learned jump out at me. I can count the people I’ve seen in person since March 20th on two hands and I’m surprised that I don’t yearn for more interaction. In truth, I think I may have to turn in my extrovert card when COVID goes away because I’ve learned I don’t miss being around people!!
For the first 37 days I didn’t even start my car and I learned I don’t miss driving like I thought I would. Since mid-April I’ve driven a total of 98 miles, the longest of which was 32 miles roundtrip to the cemetery on what would have been Tim’s 70th birthday and 22 miles to and from my office to get my work computer repaired. I’ve only been to the essential places to get essential things. I’ve learned I can live on very little and that I already have more than enough in my home to keep me content for years to come.
In the 100 days I’ve watched more than 50 documentaries and movies based on true stories and learned that my love of learning about people, places and things is stronger than ever. I’ve read three non-fiction books and the entire Old Testament of the Bible so far and look forward to what’s coming next. I’ve challenged myself to do new things, including building a LEGO world without Alzheimer’s, raising $3,000 for the Alzheimer’s Association fundraiser and learning new LEGO building techniques in the process.
The last eight weeks of my 100 days alone have been the hardest. The resurgence of COVID as cities have begun reopening have also brought new fears to my mind. But it’s the current racial unrest in this country that has brought me to tears day after day since the killing of George Floyd and many other Black victims. It’s been hard to sleep and think of much other than race relations (or lack thereof) during the early violence and the continuing protests and on some days I’ve felt completely overwhelmed. I have lots of faith, but it’s difficult find hope in the current state of this country on most days. I wonder and try not to worry about what will happen next. I hope that earnest dialogue on race in the US will occur and that true change can begin, but I feel that may just be wishful thinking.
Even with the current unrest, at the end of my first 100 days of being locked down alone, I believe that I am a wiser, smarter, stronger, and even more faithful person. I am thankful for my family, friends and for my relationship with God, all of which remind me that even though I live alone, I am never really alone.