A Spirit that Shines Through It All!

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!

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The Weight Of It All!

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 17^th 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 2^nd.

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!

“I Think I’m Still Here!”

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!

Me, and Mom with Dr. Idoko and Janet

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!!