Encore – An Adult Respite

canterbury3At the risk of people thinking that I only write when something unfortunate happens, I wanted to assure you (and myself) that there are plenty of good things that happen every day. I promise!

Last week, my new friend, Valerie, asked me to speak to a group of new volunteers for Encore. Encore is the adult respite program at Canterbury United Methodist Church. This is my parents’ church and the church I grew up in and got married in! I was thrilled to tell this group about the wonderful benefits of Encore, but knowing that this is a very emotional subject for me, I decided to write it down. I become a total cry baby when I talk about dementia and my dad, so I knew that notes would be very handy. I was right!

Anyway, I wanted to share my comments with you because I want you to know what a blessing Encore is to my dad and I think that some of you might be interested in volunteering your time to this wonderful ministry. Should you decide that you want to share your love and your time with people like my Dad, please reach out to me and I will put you in touch with some awesome people at Canterbury!

Here goes:

First I want to thank each of you for being here today. Without you my Dad would be at home seven days a week. Without the volunteers at Encore my Dad would continue to feel isolated from his peers and useless to his wife. Without Encore my dad would not have “news” to share with my mom. And without you and Encore, one day would simply roll into the next day and to the next day and to the next day.

 

I am very emotional about Encore because my Dad is my hero and I am not used to the roles being reversed. Eighty percent of the time, my dad is my dad and nothing has changed. The other twenty percent of the time it is very difficult to be around my dad. It is hard to keep up the conversation and remember what tale we are spinning to settle him down.

 

Encore has allowed my dad to be in a familiar surrounding. His church. Encore has allowed my mom, who is confined to a wheelchair, to attend a lunch group that she once attended weekly. She went to eat with her “lunch bunch” a few weeks ago for the first time in over a year. She told me that one day she plans to go to the Target by Brookwood mall and go down every isle and see everything in the store! You see she did not receive her motorized chair until one week after my dad was diagnosed.

 

We thought it was going to be difficult to get Dad to attend Encore. We had to spin another tale about Encore being a new group for his generation of church members. Now he looks forward to coming to Encore. He loves BINGO and darts and he even helps with art projects. He thinks he is helping you . . . that is part of our tall tale . . . but you are the sunshine in his day.

 

He is calmer when he has attended Encore. He sleeps through the night and he has news to share with my mom. Dad was always telling me he wanted to be useful and Encore seems to be making him feel useful again.

 

I am so glad you are here today. I hope you will get the opportunity to meet my dad if you don’t already know him. His name is Vann Henagan and he is a retired banker, father of two, grandfather of five and husband to Ann for over 50 years. He is awesome and he has dementia.

 

As I learned in the support group that I attend with my mom here at Canterbury: Do not get caught up looking at the horrible disease that these people have or you will miss the wonderful part of them that is still alive and well.

 

Thank you for giving Encore your time and these participants your love. What you give will come back to you ten fold.

 

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No Flashing Road Signs in Our Future

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They were not kidding when they said “parenting is not for sissies.” My Saturday morning started with a quick drive to Tuscaloosa to pick up number two daughter. She was not feeling well. My Saturday evening ended with me sleeping on a plastic loveseat with a plastic pillow while our daughter recovered from an appendectomy. We are so thankful that we have so many wonderful doctors and hospitals in Birmingham and I am lucky that my daughter wants me to stay and look after her. I am also thankful that she is feeling better and eager to get back to her internship in Greensboro.

But my parenting skills did not end after we got most of our kids home and under one roof. After a good nap and in an attempt to avoid the grocery store for one more day, I am off to the mega warehouse store to pick up a few things in anticipation of a beach trip just around the corner. Life is good. Kids are happy and then the phone rings. Isn’t that always the way it happens. Life is good and then the phone rings…

Dad is missing. WHAT?! He has been gone for an hour and they have no idea where he is! This could not possibly be happening to me. This sort of thing only happens on the news and it only happens to other people!

Obviously I am off to my parents’ place. Luck was on my side and all seven lights between Brookdale and my house were green. As I passed the overpass to hwy 31, I begin looking for my dad along Lakeshore. At the same time I am calling Brookdale to make sure they have been alerted that Dad is off the radar. Mom has already contacted the Homewood police and the sitter is roaming the building looking for my dad. I am in search and rescue mode.

We have all been in this situation before. Right? I know I have  been in this mode on more than one occasion with my twins when they were toddlers. I think we lost them in Let’s Get Organized in Homewood, the Botanical Garden and then there was that awful time at the SanDestin Beach Resort! Fortunately all ended well and we lived to tell the story. And of course we still remind them of these stories many years later.

This time I am envisioning a large sign hanging over hwy 459 that says missing elderly man. Last seen wearing wool slacks and a long sleeve plaid shirt. At least he was not wearing his normal red cashmere sweater on this day with heat warnings.

No sign of Daddy on Lakeshore and then the phone rings . . . he has been found. Many prayers were sent up to heaven at that point. I went from the Please, Please, Please prayer that we Episcopalians do to the Thank You ,Thank You, Thank you prayer. Remember, I missed church because of a rough night on a plastic loveseat at the hospital!

Dad was snoozing in his chair in their apartment at Brookdale. No big deal. Nothing out of the ordinary. REALLY!? He insisted that he was sitting on the balcony of his apartment the whole time. The sitter and my mother give me the look that says “No, he was not!”

So . . . I play along. I brought the case of wine that was requested. I was beginning to think I might have a glass! Dad was hungry. After all, it was around 3 and he had not had lunch. I am so thankful that this story ended with a grumpy hungry man in a hot apartment at Brookdale and not me wandering the trail along Lakeshore looking for my dad. All was good. No flashing sign would be added to our highways advertising that we had lost my dad. My sister would return from her vacation and not have to join a search party. My mom could sit in her chair and silently cuss him out for scaring the life out of her and us!

It was a good day, after all.

Will we make some changes? You better believe it! I have already talked to the Homewood police and was disappointed to learn that there was no program available to keep up with wanderers. However, they confirmed that my mom should have called them before she called me. They look for and find wandering dementia patients all the time. Apparently there is an entire club of wanderers out there!

We already have Medic Alert. This is a great option that allows my parents to wear a charm or a tag that spells out all of their health issues. Tomorrow I plan to contact Medic Alert and add the feature for wanderers. It will cost a bit more but isn’t it worth it! We could never live with ourselves if we scrimped on a few dollars and then could not locate my father. Easy decision for me and hopefully no illuminated signs in our future.

It was a good day, after all.

Longest Afternoon Ever

 

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Summer has officially started and Vacation Bible School and Youth Week at St. Luke’s is coming to an end. Two of my children have participated in VBS and one has participated in Youth Week . . . and boy are we tired!

During Youth Week the teenagers in our church have the opportunity to serve others. They have the opportunity to step out of their comfort zone and do something for strangers, for people less fortunate than themselves. Some of these strangers have far less than our children and some of these strangers have lived wonderful active lives within our very own community and are now “living in a different type of community.”

No, I am not writing about my summer plans, I am still writing about dementia but today dementia had a different face. Today, the youth of St. Luke’s went to a nursing home to spend some time with some men and women that needed to see a friendly face.

Now, I am all about brightening someone’s day but, part of me was thinking that this was absolutely not what I signed up for! I agreed to drive these teenagers to a senior center and maybe do some manual labor or play a game or two. But God has a sense of humor. Dang it!

We quickly realized that the senior center was not expecting us so on to plan B,  a nearby Nursing Homes. After a quick phone call to a well-connected friend, we were off to the Nursing Home to do something “helpful.”

We got a good laugh about a group of Episcopalians heading in to a Methodist facility. I guess that was our first hint that God has a sense of humor. We all serve the same God and we are all doing work for the good of others. Methodist or Episcopalian we were in this together today!

The kids were quickly sorted into groups and escorted off to various parts of the Nursing Home. Some were off to play bingo, some to paint fingernails, some to sing and others were taken to living rooms simply to visit with a resident or two. And then there was my group. I quickly realized that we were not going to play bingo and it did not look like coloring was even going to be an option.

After a quick survey of the room I noticed that three of the ladies were holding baby dolls and four others were staring blankly at the TV or the table in front of them. Crayons and coloring pages were handed to the teenagers and each teenage girl hesitated to approach the ladies. We were clearly in the memory care unit and most of these ladies were no longer verbal. The baby dolls were their babies and most of them wanted to go “home.” The girls tried unsuccessfully to talk to the women. Some girls offered crayons to the blank faces and then decided maybe it was best if they colored the pages themselves. This was going to be a long afternoon! God was seeing what we were going to do with this life lesson.

I headed over to one of the tables where three rising seventh graders were seated next to a woman holding a baby doll. I sat down and immediately started telling the resident where these girls were from and what they had been doing all day. All of my talk fell flat on the blank stares of Ernestine. One seventh grader whispered to me that she could not understand what the woman was saying, so she just smiled and agreed with Ernestine. What could I say? I could not understand Ernestine either. During the silence that seemed to go on forever, I realized that Ernestine was reading the teenager’s name tag and spelling her name over and over. G-E-O-R-G-I-A K-A T-E. Over and over and over again. Georgia Kate and her posse of three did not give up. They sat with Ernestine for an hour. Sometimes talking, sometimes smiling and nodding and sometimes they just sat with her. They were just being there with a stranger. Did they make a connection? Maybe or maybe not. But these girls did not shy away from this awkward situation. I am sure they wanted to leave. Heck, I wanted to leave! But they stayed and they colored and they were there. Sharing space with a woman who was content spelling their names over and over and over.

Forty-five minutes into this nightmare also known as Youth Serve, another high school girl comes to me and says “We need a conversation starter. All she wants to do is go HOME.” This sounded very familiar to me so I moved from one table to the next in hopes of helping the girls start a conversation. A conversation that does not involve going home. Let me tell you that this is very hard to do with a total stranger! After attending a dementia support group for several months and reading all kinds of books, I know all the things that you should not say. These sweet teenagers said all the wrong things: What did you have for breakfast? Does your family live here? Is someone coming to pick you up? They did not intend to say the wrong thing. They were hoping to have a conversation. Mary was happy to give answers to their questions. We have no way of knowing if the answers were correct or not, but this quick exchange between the three of them helped time pass.

I looked at my watch and wanted to scream when I saw that we had another hour to spend in memory care. I was not sure the kids could take another hour and I knew that I could not! Fortunately we were able to make an exit and go to another floor for a more lively game of Bingo before it was time to flee the scene!

The teenage conversation after this event was interesting. Many of the kids quickly pulled out their iPhones and the last two hours were quickly forgotten. Other teenagers looked sad maybe even depressed. Since I am seldom at a loss for words, I asked them if they thought this place was depressing. Many of them nodded in agreement. I tried to cheer them up by telling them that although the residents may have looked sad, they were probably not sad at all. These residents were perfectly content living in their past, loving on their baby doll and waiting on their ride home. I explained that “home” is not a physical address but rather a familiar face. This thought had never occurred to the youth.

As we climbed into the steamy car to head home, one teenager said “I enjoyed that.” My first thought was that I was glad she did, because I was ready to get the hell out of Dodge! I asked why she liked it and she explained that on one afternoon she learned something about the service project. On the next day, she helped someone by doing some manual labor to make their space a happier place. But today she made someone feel better. Ok. She was right, I was wrong and for a brief moment this fourteen year old was wiser than the fifty year old driving.

God has a sense of humor. We were all pushed outside of our comfort zone and asked to make someone happy. Sounds easy enough. If left up to my own choice, I certainly would have picked bingo over memory care but “we” did make some people happy today. I am not sure if we made the residents happy or just lightened the load of their caregivers for that brief moment in the middle of a long afternoon.

Never Say Never

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Today I was reminded of something that happened almost exactly a year ago today. Last June, I sat at my parents’ kitchen table and looked at the brochure from Brookdale Retirement Community. My parents had made an appointment at Brookdale to tour their independent living community. My sister and I had no idea that they were going on this little field trip. We knew that the idea had been tossed about but as far as we knew, it was just a passing thought.

Now that passing thought was sitting on my parents’ kitchen table in bright glossy pages. Pictures of older couples participating in activities at Brookdale covered their table along with floor plans for various apartments. It made my stomach turn.

Although I was surprised that they had toured Brookdale, I was more surprised with my Dad’s reaction to the material. You see, Dad designed their house on Norman Drive. He always said that he designed the house so that he could move out . . . “feet first.” He made the doors wider than the standard door so that a wheelchair could fit through each door. Was this foreshadowing of my mom’s future in her wheelchair? Everything they needed was on the first floor and years earlier a chair-lift had been added so that my parents could continue to use the rooms upstairs. Now my parents were actually thinking about leaving their “forever” house. How could this be happening?

After seeing my dad’s face, I put my hand on his hand and told him that I would never make him leave his house. Did I know then that I was telling a lie to my dad?

Fastforward one month. I was sitting at that same kitchen table talking to my mom about the fact that dad had absolutely no memory of me spending the day with him just the day before. Fast forward 24 hours and I would be blocking the front door trying to keep my dad from leaving his house and “going home.”

A mere two weeks later, I am touring Brookdale with a friend.

I toured independent living and memory care but I had one particular request. I requested that they show me the biggest, nicest apartment that they had  available. I may have told my dad that I would NEVER make him leave his house but I was only going to break my promise if I could move him to the best possible apartment at Brookdale. Only the best for my dad!

Fortunately, there was a two bedroom plus a study availabel for immediate move in! Now to go back and break my promise in person.

So, the moral of this story is Never Say Never. Remember that we do the things we do out of love not out of spite. We were not moving our parents because we wanted get them out of their house. We were moving them for safety reasons and we were in hopes that this new community would keep my mom from feeling trapped in her own home.

Nothing is perfect. Moves are hard. Change is hard. But Love is constant. Parents are special. Change is hard and nothing is perfect. But love wins every time.

If you have to move your parents and break a promise, remember the reason you are making the move. Ask yourself if you are moving your parents for selfish reasons or out of love. Chances are you are making your decision out of love. Trust your instincts. That quiet voice that is prodding you along is from above not down below. It is that voice from above that will keep you upright and moving forward in the coming months. Trust me on this one.

I write this tonight not only for my benefit but for the benefit of a new friend in a weekly support group I attend. My friend is in a tough spot but she will find her way through this journey and she will make the decision that is best for her and for her mom.

Another new friend gave us a quote today: God does not call the able; He enables the called.

I agree and I will never say “never” again. I hope.