Creating a Space for the AMAZING!

The past three days can only be described as Amazing!! Thursday was a fairly normal day at work. I was working late until it was time to go to Virginia Theological Seminary for the first night of a class entitled “Becoming Holy Whole”. I was really looking forward to it. Then I got a call from the owner of Mom’s group home saying that during an unusually busy time at the home providing tours for the families of prospective new residents, Mom had gotten out of the home! I stood up from my desk and started to gather my belongings while the owner talked. I was told that while the caregivers frantically searched for her around the home and outdoors, Mom had gotten almost half a mile up the road and had apparently fallen into a ditch. Her fall was observed by a passerby who thankfully called 911. A fire truck arrived, helped Mom and after the ambulance arrived she was loaded onto a stretcher. I was also told that she was talking and seemed to be ok. I remember thinking, how can she be ok if she fell into a ditch? She’s 90 years old. I ran to my car and raced to the hospital the owner had learned they were taking Mom to. When I arrived at the ER, Mom was in fact talking and she did indeed appear to be ok. I asked her if she’d gone for a walk. She replied “no, I haven’t been on a walk in a long time. I only came here because they wanted me to go for a ride”. The EMTs who were still standing by Mom’s stretcher smiled. The doctors and nurses who attended to Mom so lovingly were amazed, not only that she was 90 years old, but that she hadn’t broken anything in her fall. The cat scan of her brain and spine, xrays of her abdomen and her blood work were all normal. While I was with Mom waiting for the test results, I received multiple calls from the group home owner, and ALL of the home’s caregivers asking how Mom was. Many of them were as distraught as I was, and some were in tears. By the time Mom was released later that night and I returned her to the group home the caregivers were standing at the door awaiting our arrival. What a sweet homecoming! I got more of the story of how they believe Mom escaped and we discussed ways to prevent this from ever happening again. As I drove home totally exhausted I kept thinking how AMAZING it was that Mom was ok…

While waiting in the emergency room with Mom, I had written to the adminstrator at Virginia Theological Seminary advising them that I would miss the first class. On Friday morning, I received an email not only from the adminstrator who I’d met during the class I took last month, but also from the Professor of the class advising me that they’d prayed for Mom during the class and looked forward to seeing me in next week’s class. He shared what they had covered in the first night and reviewed what we’d be covering in the second week so I’d be ready. I thought the time, care and thoughtfulness of the Professor reaching out to me was AMAZING. This isn’t a class for credit, just a way for some of us to explore more closely our relationship with God. The emails from VTS made me feel as if me and Mom mattered to them.

Friday night I headed to dinner with the group of us who serve as Vergers at St. Mark’s. The dinner was hosted by David and Stephanie Deutsch in their lovely home on Capitol Hill. David has been head verger at St. Mark’s for I don’t know how long, and a few years ago, I affectionately gave him the name “Head Verger Dude”.  After Thursday’s episode with Mom I was ready for some fun and relaxation. It was an evening full of fellowship, food and love! After dinner, David gave us a brief lesson on verging and its importance in the church before we moved to the living room where he gave us each a card and gift and thanked us for what we each brought to our roles as vergers. It was AMAZING! Before the evening ended, David announced that he was handing off the Head Verger role to Josie Jordan, a calm, loving and beautiful soul. Like David, Josie is also a verger at the Washington National Cathedral. We will be in great hands with Josie and I look forward to working even more closely with her. I got home to see my gift from David was a coffee mug that says “Vergers are at your service! Caretakers of the liturgy, Helpmates to the clergy and Shepherds to the congregation.” I’m having my coffee in the mug as I type this post! One of the things Josie shared with us Friday night that stuck with me and became the title of this blog is that she believes the verger’s role is “creating a space for the amazing!”. I instantly got out my phone and wrote that down! I so believe that’s true – whether we are creating space for the Holy Spirit, or comfort and support or engagement and enrichment – it should be AMAZING for everyone in that space!

Even after getting home much later than I had intended from the Deutsch’s Friday night, I was up bright and early yesterday and ready for my drive to North East, Maryland to participate in a Regroup, Relax and Release retreat with the Coffee, Tea and Me Caregiver Support Group from Baltimore. I had met the group’s founder Shirl Parnell at the Alzheimer’s Association event I spoke at last November and she “insisted” that I come and speak to the group. I had never even heard of North East, Maryland but after driving for two hours it was a welcoming and very quaint little town. Then I arrived at Sandy Cove Ministries – a huge retreat center, that makes you feel relaxed as soon as you drive onto the property. I love water and it’s one of the first things you notice about the resort. The conference facilities, campground, hotel and cabins are all surrounded by water. I took a deep breath and walked down to the water. I arrived an hour early so I had time to just sit and take it all in. I felt as if the water had washed over me and it was AMAZING… I felt the anguish of Mom’s incident just two days before begin to wash away..

Before the event started, the entire planning team of the support group held hands around the registration table and prayed. Witnessing that prayer set the tone for the entire day for me. By the time the event started I felt loved and embraced. The day is hard to describe for anyone that wasn’t there… but there was prayer and praise, laughter and dancing, self-esteem building and unconditional love and support. We all know how overwhelming caregiving can be, so there were also many tears of release too!! I received so many hugs during the event that I lost count. I had planned to come back home after lunch, but I felt AMAZING and knew that God was telling me to stay until the end. I did, and it was so worth it. We were told to “let things go that aren’t ours to carry”, and Lord knows I needed to hear that! After the event, I put on my sneakers and went for a long walk along the water.

There were these huge orange boulders all along the water and I knew that Tim was there too. For me, the entire retreat and it’s incredible location created for me as Josie put it a “space for the amazing” at a time when I really needed it. I’m hoping that this upcoming week will be a lot less emotional, but I’m definitely open to and ready for more of the “AMAZING”! I’m ready!

 

 

“She’s Not Going to Remember Me??”

When I picked my granddaughter Kendal up yesterday afternoon for our movie theater date, we had a little more than 2 hours to kill. Usually we go to Chick-Fil-A so she can eat and play, but she said she’d rather go somewhere else. Before I knew it I was asking her, “Do you want to go see my Mom?”… “YES!” she said, and asked “where does she live?” I explained that she lived in a group home that was on our way to the movie theater. “What’s a group home?” she asked. I did my best to explain what a group home was, and that Mom lived there because she needs help doing her every day tasks and can’t live alone. For a minute she said nothing, then said “ok, I’m going to color her a picture in the coloring book”. She worked steadily on coloring and while she was coloring I asked if she remembered the Easter Egg hunts we did with Mom when she was younger and she said she did! I then tried to find the right words before sharing that Mom wasn’t going to remember her name or the things we’d done together. She stopped coloring and asked sadly “She’s not going to remember me?” I had to say no, and told her that Mom no longer remembers me either. “Oh…” she said.

Kendal finished coloring the picture just as we arrived at Lifesprings Eldercare. She colored my favorite, which is the first picture I chose for our coloring book and declares that I love my Mom, “to the moon and back”.. Something Mom used to say to us all the time. Kendal bounced out of the car and rushed to the front door. When Janet the caregiver opened the door, Kendal confidently marched right up to Mom. Mom seemed to recognize her for a split second and said “Oh, HI!!”. Kendal said “Look I colored this for you”.

Mom smiled and said “oh, it’s pretty” and Kendal beamed. Kendal then told Mom “I wrote my name in cursive so you’ll remember that I made this for you”. Mom read the words on the page over and over while Kendal held the book steady so she could see. I had to get up and go in the kitchen with the caregiver so I wouldn’t cry. Then Kendal asked if she could see Mom’s room. So I gave her the tour and she asked a lot of questions. She liked Mom’s bed and said it was “great”. She then checked out the bathroom outside of Mom’s room, and asked why the shower was so big. I explained that Mom needs help in the shower and the caregivers sit her on the shower seat and help her to get clean. Kendal sat in the shower seat and said “Mommy used to help me in the shower too”. I was thrilled that she seemed to really get it, that Mom is almost in a “baby-like state”. How true that is!

When the tour was over we went back to the living room with Mom and hung out with her until it was time for dinner! Kendal showed Mom her dance moves and did flips, twirls and splits. Mom seemed to love the performance and at one point she clapped and said “yay”! Mom then began reading the birthday card I gave her last month which has all of the important events that occurred in 1929 when she was born. Kendal listened intently to Mom read the card several times, barely taking her eyes off of Mom as she read. I wondered what Kendal was thinking but didn’t want to interrupt the moment.

I had the most amazing time watching Kendal and Mom together. We got ready to leave as they sat the residents at the dining table. Mom is walking much more slowly these days, but needs little help to get to the table. After she was seated at the table, Mom said to us “I’m going to have dinner now”. As we put our coats on, I said to Mom “we will see you next time” and Kendal said “bye! see you next time”. When we got to the car I asked Kendal if she wanted to come see Mom again, and she said “Yes!”. I wonder why I waited so long to take Kendal to see Mom, especially since they always got along so well when Kendal was 2 and 3 years old. As Kendal got older, I wanted to explain dementia to her but never did, even though I have a beautifully illustrated book that explains dementia to kids. I’ve always said that Kendal could adapt to anything, so I should have gotten them together sooner.

As part of my Lenten discipline, I’ve ben journaling my prayers, my spiritual practices, and how I’m enhancing my relationship with God. Watching Kendal and Mom together was incredibly spiritual for me. Kendal was calm, attentive and patient. Mom was receptive, happy and as attentive as she can possibly be. Their smiles and joy of being with each other once again provde to me that living in each moment is priceless. I almost forgot that we needed to get to the movie theater. Kendal and I enjoyed the movie immensely, yet several times during the film my mind switched back to the amazing connection I’d witnessed betwen Mom and Kendal. I’ll be scheduling the next visit for the two of them right away. We never know how much time we have left, but I want them to have as much of a relationship as is possible for the time that Mom has left. I believe I owe them both that. I certainly hadn’t planned a visit to see Mom yesterday, but it was the best unplanned visit EVER! Thank you Mom and Kendal for making yesterday special for me! Love you both to the moon and back!

Walk a Mile In Their Shoes – My Virtual Dementia Tour Experience!

Have you ever wondered what it’s like to have dementia? After 13 years of watching my Mom suffer with this disease, I definitely have. When I look at my Mom, I’ve always wondered what she’s feeling and thinking, and whether or not she’s aware of her surroundings. This afternoon, courtesy of Rob and Kerry Massie, owners of BrightStar Care of Fairfax, VA, I got glimpse into what my Mom deals with on a daily basis. I was invited to take the Virtual Dementia Tour at BrightStar Care by my friend Theresa Pritchett, who I met at one of my Alzheimer’s presentations. I jumped at the chance to participate in this experience, though I was really nervous about it too. I thought it would be very emotional, knowing that what I felt for a few minutes, my Mom feels all the time. And it was!

When I arrived at BrightStar, Theresa took me to a conference room to get me ready. She gave me my “tools” I would need for my experience…. First came the two pair of gloves… the latex gloves which go on first, then the cotton gloves with prickly insides on top to simulate hands with neuropathy. Next came the headphones to provide sounds and white noise during the experience. The two scariest and most uncomfortable items were the inserts that go in your shoes, which made you feel like you were walking on glass, (another symptom of neuropathy) and the glasses, which made it difficult to see almost anything that wasn’t directly in front of you. Last but not least were the rubber bands twisted around my fingers that made it feel as if I had arthritis too.

After I was outfitted with all the required “tools”, Theresa led me to the door of the “room”, set up like a typical living room. As I stood in the doorway, Theresa gave me five tasks to complete and informed me that I would have two minutes to complete the tasks. With the noise blasting in my ears, my feet burning and me barely able to see or move my hands, I entered the room trying to remember what Theresa had told me to do.

I remembered that the first task I was given was to put on the tie that was in the room. I saw the tie hanging down from something and I grabbed it and put it on. Then, as I was trying to remember the next task, Theresa said something to me about hurrying for some appointment I think. I vaguely remembered that I was told to put on a red sweater and to put some pills into the pill box, one for each day.

I saw the pill box sitting on the table and a prescription bottle of pills next to it. My hands hurt, but I managed to twist the top off. I couldn’t grab a single pill out of the bottle because my fingers didn’t work so I tried pouring the pills into the box. That worked somewhat. The pills were different colors, and I saw a red one and a blue one in a single day’s square. So I tried taking one of the pills out but it dropped on the floor. Eventually after what seemed like a lifetime, I got the pills in each of the seven daily slots. I saw the red sweater on the couch I think, but there was another garment next to it so I wasn’t sure which one was the right one. I selected the red one but couldn’t figure out how to get it over my head. I heard Theresa say again “hurry up it’s time to go”… I wanted to say, “stop talking to me, I’m still trying to get the sweater on!!”. But I didn’t cause too much noise was in my head.

Then without me ever getting the sweater on, Theresa tells me the time is up, my virtual dementia experience is over. Wait!!! That was two minutes?? Felt like forever. I’m usually so good at tests but I think I failed miserably. I did get the tie and hung it around my neck, but I couldn’t tie it, and don’t think I even tried. I don’t even remember two of the tasks Theresa gave me, but I tried my best to get the pills into the proper slots of the pill box. That was my total focus I think. I wanted to cry because for years, my sister and I allowed Mom to put her one daily pill into each of the days of the week of her pill box. It made me wonder how many times she may have put more than one in the slots (taking too many) or dropped them on the floor like I did during the experience. As for the task of putting the sweater on, I don’t know why I couldn’t get it on. I tried turning it around several times, but I couldn’t tell where my head was supposed to go. There was so much noise in my head I couldn’t focus.

When I took off all my “tools” after it was over, I looked around the “living room” that I’d been in. Right away I noticed a toy cat sitting next to a food dish that I NEVER saw at any time I was in the room. I was then able to see the design on the pillows on the couch which I certainly couldn’t make out when I was in the room. I ws told that I was very calm during the “experience” as many people get very irritated while going through it. I spent almost two hours chatting with Theresa, Rob and Kerry after my “experience” but my feelings of being so discombobulated and uncoordinated while in that room trying to complete those tasks stayed with me. As I drove home in the surprisingly light Friday afternoon traffic in the pouring rain it was hard to see the road at times. That feeling again took my back to my Mom. I’m guessing most everything is hard for her. I can’t tell you how many times a day she says “I don’t know what I’m doing.” I certainly didn’t know what I was doing when I was in that room. When Mom repeats things over and over, I’m always very patient with her. Today I think I have a better understanding of why she repeats everything. While Theresa was giving me the five tasks, I kept repeating the first task to myself (getting the tie) so I wouldn’t forget it, but then I couldn’t remember the other things she told me. It was overwhelming!

I highly recommend that anyone who works with or loves and cares for someone with dementia take the Virtual Dementia Tour. When the tour is over, you have a much deeper level of empathy that it’s impossible to have without participating in the experience. I’m thrilled to have had the experience today and am grateful to my friends at BrightStar Care for hosting me. God knows I have a much better understanding now of what it’s like to have dementia AND what it means to “walk a mile in their shoes”… Love you Mom!