On the Other side of the Wall: Survivor

   We live in the land of The Survivor these days. Wrist bands and T-shirts walk around advertising those still standing after battling disease. We walk and run and bicycle and swim to support the cause for those fighting who will be the next batch of survivors. I want to awaken the planet to notice a survivor that has been fighting and giving and shedding tears. She has been sacrificing her time and spending her last bit of energy. She has to keep it up every day. How about a T-shirt that says I Survived Care-giving? How about a wrist band that says I Support the Care-Giver? How about Care-giver Awareness Month when anyone who cares for a loved one in their home gets a free massage, or manicure, or pumpkin-spiced latte or hey what about a pat on the back? How about that? I would personally order a box of T-shirts for my own family. What would the shirts say? Maybe "I Survived Alzheimer's and Went a Little Crazy", or "Where AM I" because Grandma used to say that the most over and over all day. Maybe the wrist-bands would have one of Grandma's favorite sayings while she had Alzheimer's: "Laugh or You'll Go Crazy!"
   I think I'm tired of the care-giver going through her fight with disease quietly unapplauded. She is noticed but not enough for people to help much or care much about her own personal struggles day in and day out; night in and night out. Family members who live far away send their aging mother a set of towels or a box of her favorite cherry cordials or a fifty dollar check to cover the cost of a new night gown or bathrobe. But what about a fresh flower arrangement once a month with a card that reads, "Thanks for taking care of Mom. You're amazing!" What if the care-giver's church sent some ladies to the house to sit with the Alzheimer's patient so the care-giver could go out on a date with her spouse and not worry about paying someone to be there for two hours? What about more people just plain old saying something to encourage the care-giver once in a while? Things like, "You're doing a great job, Your mother is blessed to have you, Are you taking care of yourself?" Wouldn't it be great if her closest friends vowed to take care of HER and shared in pampering that care-giver every now and then because she won't do that for herself?
   The flip side to support is that we all have to carry our own burdens for the most part. Even with the most supportive community around us, at the end of the day we all have to pick up where we left off and keep carrying the responsibilities that are waiting on the other side of our front door when we get home. But what would it be like if there was always someone knocking at that same door with a T-shirt that said, "Here to Help" or "Smile! You're Not Alone"?

On the Other Side of the Wall: Left Behind

   Alzheimer's took the mother my aunt, uncle, and dad loved so much a long time before Grandma's actual death. They were left behind, erased from her memory while she was still living. When I think about this particular reality of the disease it scares the heck out of me. I have to push the terrible thought that I could forget my own children far, far away from my mind. Who knows if Grandma ever knew what was happening to her. I don't think she ever truly confided in anyone that she was confused and losing touch, it just sort of happened. There was a certain amount of bitterness and sorrow attached to the fact that Grandma was no longer who she had always been. She was a gentle, classy lady with a degree in Science. She laughed in a way that made you smile, wore red lipstick, and appreciated the beauty of flowers, butterflies, rocks, and shells. And she was adored by her three children. The hurt they felt as they slowly lost their mother is still years later difficult for them to think about. She was there but not there.
   Along with her children there was someone else left behind, someone else whose heart had been breaking from the first recognition of Grandma's failing mind. He had fallen in love with her when they met at a church single's group for young people. He had been her husband for over fifty years. The receipt of sale from the engagement ring he bought her so many years ago was still tucked away in his dresser drawer. I was only a teenager when we started helping Grandpa around the house and began checking in on him and Grandma. I was worried about him. Everyone in the family was so concerned for Grandma's health and safety but what about Grandpa? Things were tough for him at home. Grandma's incessant talking and wandering around the house must've been driving him crazy but he had been on his own with her for years before she moved in with us. Yes, things could've been different if he had been more open with the family. In his mind he was protecting her, saving her dignity, and preserving  the privacy that was so important to them both. Maybe he was afraid she would be taken from him. What was going through his mind that day when he was left behind in the driveway, alone? We drove away with his bride and she would never come back home to him. I wish I would've showed him more empathy, I wish I would've asked him how he was doing. His heart very literally was breaking.

On the Other Side of the Wall: Support Part 2

   The idea of support has many sides and the more I think about it the more I come to realize that it's pretty much a catch twenty-two. You want support and need support for whatever it is you're doing but in the end YOU are the one who has to do it regardless of all the support in the world or no support at all. You are still going to have to cross the finish line after a grueling half-marathon in high temperatures and humidity. You are still going to have to have to push that baby out when the time comes. You are still going to have to get in the driver's seat and parallel park the car to get your license. You are still going to be the one caring for your loved one with Alzheimer's after a night out. You need support to keep going. But the burden is still there. Maybe it was lighter for a while, maybe you even forgot it was there at all for a day but eventually the reality of that hard thing will come back. So does support even matter? Most of us are independent enough to consider that it's not even worth it, that we've got the situation under control and who needs that extra hassle of more people in our business. But what we fail to remember in those moments is that it's a marathon not a sprint. We need the water breaks, we need people cheering, we need coaches, we need somebody, anybody, to acknowledge that for goodness sake we are doing this every single day and it's hard and only getting harder.
   When we were caring for Grandma I wanted people to empathize with our situation enough to offer to help. It would have been a huge blessing if our extended family members had come to stay for a week at a time so my parents could have gone on trips or out on day trips at least to get a much deserved and needed break. But that catch twenty-two would've come into play. My mom would've had to train them in care-giving first and yes, she would've had to give up some control for sure. Initially that would've been a pain in the neck for everyone but the load would have been lightened. Recently on social media a relative posted about celebrating their anniversary. I kind of laughed to myself that I remembered their wedding weekend very clearly. My parents went to the wedding while I stayed home and took care of Grandma with my younger sister. We bonded though that weekend and other times when we were on our own with Grandma. We still laugh about some of the silly memories we made taking care of her needs. Maybe our whole extended family could have bonded through that care-giving not just us. There are two sides of the story always but looking back, the support of more people involved would have eventually paid off.
   In order for people to offer support they need to be let in. As a care-giver you have to let people into your life so that they can understand a little bit of what you are going through. You can't always tough it out or put on a facade that everything is going just great all the time. It would've meant the world to my mom to get flowers every so often from concerned friends. Maybe the ladies from church could've come over and stayed with Grandma for a couple of hours each week so Mom had some free time to do whatever she wanted. She would've needed to open up about our life and maybe she wasn't ready to do that. Between my parents and my siblings and I we had it figured out and we were making things work. We were supporting each other and maybe that was good enough.

Favorite Things: Summer Mornings

   One of my favorite things during the summer is sitting out on my deck. I love looking at my peaceful tree-lined backyard where there is usually one of my children swinging calmly on her swing, birds flitting back and forth and singing happily, and leaves blowing gently in the morning breeze. Today my kids and I ate our blueberry pancake breakfast out on the deck. We took our week's adventure first thing yesterday and headed out to what I like to call "Kingdom Come" to pick blueberries. This particular blueberry patch is tucked away in the rolling hills of the countryside. I usually drive out alone but I thought my kids were old enough to venture there with me this year and hopefully partake of the beauty of the vineyard-like blueberry patch and the plump berries. I hoped there would not be complaining or fighting over who was picking the fastest or whining of how hot it was or how long the almost two hour drive was. Yes, big hopes. But we made it and we all enjoyed the sunshine and the berries and a new adventure together doing what my Grandfather taught us oh so well to do: pick berries. Summer goes by way too fast. It's the first of August today and I got that dreaded feeling in my stomach that the summer is almost over and we need to take advantage of every day before school starts up again. But today we at our blueberry pancakes out on the deck. I drank my coffee slowly. I thanked God for my kids and for the time together.

On the Other Side of the Wall: Support Part 1

   It is dark and rainy on a chilly November night. A father hurries his two teenagers and little girl across the slippery parking lot littered with soggy leaves. They approach a mysterious looking cobblestone building which seems an unlikely place for a meeting. The doorway is gloomily lit by an orange light and they silently hurry inside. Bright florescent lights blind them temporarily as they walk down a hallway to the offices of the Alzheimer's Association. A petite friendly lady directs the young people to a side room with a large rectangular table and ten empty chairs. The dad follows the lady down the hall further to the adult room. This was the first time they ever attended a support group.
   It was our first and last time at that particular support group. A kind woman about 35 years old was our facilitator. She was nice but she just wasn't very interesting or intuitive. She asked questions and guided the flow of the group's choppy sort of discussion. Most of the talking came from a thirteen year old girl who went on and on about her grandfather who was getting violent in his Alzheimer's and ruining her parents' marriage. When she finally finished her story we watched a video, went through a few more questions, and then had some pizza and cider. Gratefully, we put on our wet coats and left. We laughed about it later, how it was so lame and jeez what the heck were we supposed to discuss anyways? Alzheimer's pretty much sucks and that's about it. I was glad we weren't the only ones dealing with it though. At least one other girl had Alzheimer's related frustrations and at least she got to get some of that off her chest. In the adults' room Dad was encouraged by the reminder that even though he may be forgetful that was NOT a sign of the disease. If he couldn't find his keys that was normal and ok. If he had his keys but didn't know what to do with them that would be a different story. That reassurance was all the support Dad seemed to need.
   Thankfully, Mom found a group that gave her some deep down support that was necessary for her as a care-giver. She was able to learn from a couple of ladies who lead the group and were the care-givers for a dementia daycare facility. Since they were care-giving they had the hands on credentials for offering advice. For my mom the group was invaluable because it was a two way street. She could learn from others and be understood but also she could share her story with others and feel like she was helping them in their care-giving ups and downs. The ladies who lead the group weren't social workers who could facilitate a discussion. No, these two ladies were heroes and hard-core nurses willing to take on the burden of dementia as a full-time job so the members of their daycare could be safe while their care-givers got a much deserved break. I went to a few of the meetings with Mom and came away from them impressed by the wisdom exchanged in the couple of hours we were there. Mom really got a shot of I got your back empathy and keep going you got this support she needed to keep her head above the never ending waters of dealing with Alzheimer's every day.

On the Other Side of the Wall: Sleepless

   For the first year of Grandma living with us she rarely slept through the night. It was as if her brain had confused night and day. She dosed occasionally during the day and walked all night long. The floor boards creaked loudly in the quiet of night as she got out of bed and began pacing around her room. She looked out the sliding glass door attempting to get the attention of every car that zoomed down the road. Her talking started as mumbling her usual "Where am I ?" over and over. After a few minutes she would begin to raise her voice at the cars going by and then at her own face in the bathroom mirror. Some nights that face got quite a sermon.

   On the other side of the wall I was lying in my warm bed wondering if I should get up or hope she would go back to sleep on her own. Slowly I pulled myself up and threw off the covers and felt my way in the dark to her room.

   "Grandma, get back in bed."

   "What? Who are you?" 

     Louder now so she could hear me I say, "Grandma, get into bed."

   "What? Where am I? Where am I?"

   I walk her to the bed holding her elbow to guide her there. I point to the bed. Firmly I demand, "Get in bed." She gets into bed, lies down, stares at me with her blank eyes. "Go to sleep", 

   "What?" 

   "Close your eyes. It's time to sleep." She closes her eyes. I silently walk back to the door, the hinges squeak. I pause and look back. She didn't hear, thank God. I walk to my room, lie down, pull the now cold covers over me and snuggle down into my bed trying to revive the heat. On the other side of the wall she calls out, "Where am I ? I don't know where I am." I hear her trying to get out of bed. Angrily, I throw the covers back, storm to her room and yell, "Be quiet! Go to sleep!" She lays down and stares at me. At least she has stopped talking. I go to the door and wait. " Where am I? " she begins again. I suck air into my lungs and exhale heavily. "Grandma! Go. To. Sleep. Be quiet!" She shuts up. I sit in the chair by her bed for a few minutes to see if she will actually fall asleep. The time goes by slowly and I begin to doze off. She seems good so I get back into bed. The clock says 1:30. Darn! I have to get up for work at 6:00. My blood pressure goes up and now I can't fall back to sleep. I hate this. If Grandma is not my responsibility then why am I the one getting up in the night? Why do I loose sleep and go to work at 7:00 in a daze and struggle to stay awake throughout the day? Duty cackles in the night and mocks me all day.
   Mom thought maybe a sedative would help Grandma sleep at night and relieve her restlessness during the day. However, despite the low dose of medication she fell in to a strange trance-like state. Pills were not the answer. In a blurred existence she would be prone to falling and less responsive. So I kept putting Grandma back to bed. Some nights it was impossible. I sat next to her in the white chair and waited for sleep to come over her still body. If she started to talk I told her to go back to sleep. Eventually I could go back to my bed and hope against the odds she would truly fall asleep. But after so many frustrating nights I just couldn't handle it and how unfair I felt it was that I had to be the one to take care of putting her back to bed. I decided to just go get Mom and let her take over and try to stay out of it. Enough was enough. Mom said I could come and get her if I heard Grandma get up. Even though I had to go all the way downstairs and walk through our big farm house and go get her in the middle of the night, I did it. This could not continue to be my problem.
   We left the bathroom light on in Grandma's room so if she did get up she could see where she was going and be safer than in the pitch dark. One night while she was opening and closing drawers and rummaging through the closet Grandma found a bra which she thought was a hat and red formal gloves which she put on like slippers. The second Mom opened the door to get her settled back into bed I heard gales of laughter. I ran down the hall to see what the heck was going on and there Grandma was standing as if she was the Queen of England. Mom was dying of laughter and gasping as tears streamed down her face. Grandma had no idea what on earth was so funny. But we took her sage advice she would often share in those early days: "If you don't laugh you'll go crazy." We laughed together and let off some steam and put Grandma back to bed. Again.

   

On the Other Side of the Wall: Escape to Russia

   That fall season when Grandma first moved in with us I was eighteen and at home when most of my friends were leaving for college or making plans to go to college in the next year. Planning for my future was intimidating. Mom and Dad weren't interested in sending me to college because they wanted me to wait for opportunities to work or travel with the program I was studying under. So I waited. I was busy but also frustrated and stuck. But that's life I guess. Learning the ropes of care-giving was important too, for the long haul, as much as I disliked it. There was also the aspect of support that was important during those months. Being together with my family and experiencing what they were dealing with made an invisible investment in the bank account of support and sharing the load of caring for Grandma that only years later I would be aware of.
   In November I got an invitation to go to Russia. WOW! Despite not really having any interest in Moscow I used up my savings and got on a plane filled with other young people and flew the heck across the world to get a break from life. At the airport in Moscow our baggage was loaded onto several buses that we rode to the Moscow River where we would be staying aboard three cruise type river boats. It was cold and snowy and there I stood wearing a beige trench coat wondering how I was going to carry a large suitcase, a medium sized bag and my carry on down the gangplank to the boat. I envisioned myself slipping into the icy river while my luggage sank to the bottom. Then all of a sudden I spotted my friend's cousin,who visited our town every other summer, among the crowd of young people gathering bags. He was my hero, helping me carry my stuff, locate my boat, get my key, and then find my room. I made it! On the narrow door there was a cute little 'Welcome Sarah' sign. I pulled out my key, unlocked the door, and walked in. The little room had two skinny beds and a tiny bathroom that reminded me of the one inside my grandparents' motor home. Here I was across the world by myself in a room wondering what to do next but at the same time happy with the autonomy I felt. Eventually my roommate arrived and introduced herself. She apologized for not being there to greet me when I came to the door. I felt at ease with her genuine spirit and smile and before long we were sharing our stories of how we came to be in Russia. For the past six months or so she had been living there and working in various schools and orphanages. I loved all of the beautiful souvenirs she had acquired including an unusual silver tea urn that was the size of the Stanley Cup. Soon she would be heading home and was looking forward to eating peanut butter again. During the week long stay I got to visit Moscow schools and hand out Bibles with my new friends, see St. Basil's Cathedral, visit a sort of tiny village of churches over a hundred years old, watch a play put on my talented school children, go shopping for souvenirs, and eat at a five-star restaurant where they served a six course dinner that included a serving of escargot. On our school tours we were treated like celebrities and one of the guys in our team attracted groups of excited girls who were anxious to get his autograph for some reason. One of the teachers chatted with me for a while and anxiously asked me over and over to write to her. She gave me her contact information which I later realized was probably her attempt at finding a sponsor to help her leave the newly opened land of the Iron Curtain. The trip soon came to an end and I headed back home with stories and gifts to share. I was thankful for the time away but it was even that more obvious to me upon my return that I really had no other plans for the year ahead. God was going to have to open some doors for me and until then I would have to hang in there and do my part to help out with Grandma and save up for the next big adventure.