On the Other Side of the Wall: Laugh or Go Crazy

   Grandma had a few phrases we never heard her say prior to Alzheimer's. They may have been from her childhood and came to the surface as the more recent years melted away. Here are a few:

The old gray mare she ain't what she used to be.

I scream, you scream, we all scream for ice cream.

Come oh Lord and Be Our Guest prayer at meals but in German which she did not speak

Oh dear, bread and beer, if I were dead I wouldn't be here.

I'm no spring chicken!

I'm Hell on Friday...her students used to call her that I think as her first name was Helen

   My favorite saying was, "If you don't laugh you'll go crazy!". I always thought it was funny because Grandma was pretty much crazy. Maybe she was giving us permission to just go ahead and laugh, it was ok. We took her advice and did laugh a lot. Laugh or go crazy, right? Maybe we laughed at her expense some of the time but she didn't know the difference and for goodness sake we were her family and going a little crazy ourselves. My brother had a knack for creating hilarity with Grandma. He got her to stand to attention while he marched around with a Russian military hat on and slapped a long dowel in his hand as if he was Colonel Klink from Hogan's Heroes.
   Sometimes the contrast to Grandma's former self made her actions funny. She used to be a classy lady who only a few years back volunteered through the Lion's Club as a Lioness, always had her hair done and lipstick on, went to church every week, and was always kind and cheerful whenever I saw her. The person she was with Alzheimer's was often times completely different than her former self. One time Mom found Grandma wearing a bra on her head like a hat and red gloves like slippers. Mom was laughing so hard she was crying.
   So we laughed at Grandma. Go ahead and criticize us. But until you are in the same position caring for an Alzheimer's patient full time you have no right. Laughing is part of surviving life. But occasionally we had the rare pleasure of laughing at the reaction of people who were experiencing the definition of Alzheimer's for the first time right in our home. My mom usually invited guests for Christmas Eve dinner. She went all out for holidays and Christmas Eve was one of my favorite times of the year growing up. The table was set with fancy china, crystal goblets, and mom's best silver. A special oyster stew we only had for Christmas was the first course of the meal. Everyone was served the piping hot soup. Something you have to be slightly careful of when using real silver for silverware is that it conducts heat rapidly. Well, before we knew it Grandma was starting on her soup and declaring loud and clear, "That's hotter than hell!". What? What did my grandmother just say in front of all of us and these nice people from our church? We were shocked and I had no idea whether to laugh or not. Our guests weren't laughing. Somebody quickly got Grandma a bowl of ice cream and she was quiet for most of the meal until she was taken back upstairs "to rest". Oh man we laughed once our guests left. That night was the first time we had ever heard Grandma swear. Another time my brother had some friends over to spend the night. The boys were about fifteen years old and goofing around in his bedroom, talking about girls, eating snacks, and then they finally quieted down to get some sleep. All of a sudden Grandma started in on her nightly routine of moaning. Keep in mind it was dark. Grandma's door was locked from the outside to keep her safe from wandering around the house and falling. Most nights she had a hard time falling to sleep and would talk loudly. "Where ammmm I?" One of the boys was startled and said, "What was that?" "What?", my brother asked. "Didn't you hear that?", the boy said. Grandma called out again. "That!", the boy said. My brother played along for a few minutes and I was trying not to laugh out loud in my bedroom down the hall. My brother's friends were starting to freak out a little thinking there was some kind of banshee living in our 1840's farm house.
   There were plenty of things Grandma did that, when I was telling friends late,r they found hilarious but I did not. There was the time Grandma dumped her jewelry box full of costume jewelry pins, necklaces, and clip on earrings down into the toilet. I heard a loud noise and came running. Since I was first on the scene I had the privilege of fishing every single piece out of the toilet before Grandma flushed it. My sister thought that was pretty funny. After Grandma died my mom gifted those pieces of jewelry to various cousins. I wonder if they knew where the "jewels" had been. Guess who's laughing now?
   One of Grandma's favorite treats was cordial cherries. A family member living out of state sent her a box in the mail. Mom put the box in Grandma's sitting room where she had a small table with two chairs and ate most of her meals. The cherries would be handy for dessert, wouldn't Grandma like that? Well, Alzheimer's or not, Grandma remembered where those cherries were and the next morning that nice big box was empty and Grandma's face was covered in chocolate. Funny? Yes, in the moment, but not so funny a day later when the cherries were exiting her system. All. Day. Long.
   We all took turns watching Grandma even my youngest sister who was only ten when Grandma moved in with us. Maybe this was not the best idea to have a child helping but after all this was our home life now. She had friends over once and they were playing school and there Grandma was "in school" with the girls. I thought it was funny. This was our strange new normal at home. Imagine what the little friends told their parents when they got home.
   Grandma had some funny reactions to situations besides swearing. We had chores to be done and one of those was mowing our huge lawn. It would take hours even with a ride on mower. When you're home on a weekend keeping track of  a grandma you can't exactly just sit inside all day. Maybe Grandma would enjoy some fresh air sitting outside while you mow the grass? But we found out quickly that she did NOT like sitting in the middle of the yard that was covered in dandelions. She thought the dandelions were beautiful flowers she was walking on and that we were trampling with the mower. At the time we just had to laugh. All those precious dandelions!
   Care-giving had it's special brand of humorous situations. My younger sister and I seemed to bond over these experiences when my parents were out of town and we were the full time care-givers. Before grandma was using diapers we had her sit on the toilet once a week after being given a suppository. This is just life, the ugly truth of taking care of someone who no longer understands her own bodily functions. So while my parents were away Mom had a friend, who was a nurse, come over to administer the weekly suppository. Well, grandma decided she wasn't going on the pot. I've seen toddlers like this but a full grown person? After a whole week of not doing her business? This was a job that needed to be done. Our friend put her on the toilet but Grandma was holding back not doing anything. I was called in to assist. What did we usually do? Did I have any ideas? So there we were half yelling due to Grandma's bad hearing, coaching her to move her bowels. I'm laughing as I write this, remembering this lady mimicking how to bear down. Oh my! And the sound effects to demonstrate. How could we do all of this without laughing?
   Laughter is a medicine. It helps keep things light when life is just plain hard. It helps you to not take things quite so seriously and snap into pieces because there are so many things that are crushing you. Do you love the fact that you are a care-giver? Do you love the difficult things life throws your way? Maybe finding some humor in it all will help. Remember, laugh or you'll go crazy.
   

On the Other Side of the Wall: Roadblock #2

   In my experience there are two main reasons why care-givers feel isolated and on their own. The first is not admitting the need for help. A female care-giver feels she should be the one to handle everything and she's not really sure how to get the help she needs and it's difficult to ask for help. The second roadblock is the plain old lack of awareness from the people around us. How many people know what it feels like to be around someone with Alzheimer's for more than an hour? How many of your friends know what it feels like to have a person in their home who has full blown dementia? The most understanding the average person has is from their once a year visit to a nursing home to sing Christmas carols or once in a while visit to a nursing home to visit a loved one. How many people even know how to spell Alzheimer's?
   When I first started writing about our experience with my grandmother who had Alzheimer's I did it as more of an exercise. I was looking for a topic to write about and thought, "Hey I should write about all that stuff with Grandma". During those years I hadn't even written much in a journal so I thought it would be a good topic to try. But maybe without realizing it I really wanted someone to understand what all of that felt like. When I was eighteen and living at home and dealing with Grandma I had a friend whose grandmother was also diagnosed with Alzheimer's. And guess what? My friend went away to college. I was so angry! She didn't have to deal with any of what I had to. She would have no idea what it felt like to be up in the night, to see your sweet grandma turned into a sort of stranger wandering around in your house, to have to change her clothes, help her in the bathroom while she yelled at you, to try to feed her a dinner that she spit out because it was too lumpy, to not even be recognized as a granddaughter anymore but as a mean intruder.
   These days nursing homes are expensive and filled up. If you have a family member you would like to place in a facility you most likely will be on a waiting list that will extend much longer than the few months you were promised. Your hand will be forced and you will have to figure out how to provide care. All of a sudden you will have to learn really fast what Alzheimer's is about. Gradually there will be more people providing care for the elderly and a percentage of the elderly population will have dementia. Is that what it is going to take for people to be understanding of their friends who are care-givers?
   We need to speak up and share our experiences whatever they are, good or bad with those around us if anybody is going to care. Americans are listening to stories about PTSD, the war in Iraq, surviving cancer, adoption, getting healthy, becoming a runner. Care-givers need to share what it feels like if people are going to be educated; if people are going to learn empathy. Yes, it's hard to open up and share your story with someone who is not in your shoes and who may never be in your shoes. But it goes both ways. We need to share our stories and we also need to listen to other people's stories. I may never go to Iraq but last week I was listening to a podcast where a soldier was sharing part of his story of coming to grips with what he experienced there. My understanding and my empathy grew for his situation, for his grief, for his struggle, for soldiers in general in the fifteen minutes I heard him sharing. It's ok if your friends don't get it. They might never get it. Maybe you can help them understand a little? You are not really doing yourself or the planet any favors by keeping everything bottled up inside of you.

On the Other Side of the Wall: Road Block #1

   So why does the care-giver feel lonely, left to her own limited strength to cope with her loved-one's needs? There could be hundreds of reasons but I think there are two main road blocks to a lack of empathy and support for care-givers in U.S. communities.
   First, I think a majority of care-givers are women who for various reasons have a difficult time asking for help. They are strong, loyal, and determined yet are probably not open and honest about their own limits. Do they ask for help? Do they expect help from their siblings and do they refuse to take no for an answer? The answer for most is no. Do these women feel ashamed of their own personal weaknesses when it comes to their parents? Do they most likely feel like they owe it to their parents to take care of everything? I think so. If you are a strong woman you might feel you are weak or failing in some way to admit you need help. It's ok to admit that your parents' needs are overwhelming. Really, when we look at women in general there is a certain expectation that in matters of the family they should have it all together and be able to care for the demands of home and family easily. Whether you are a mother of small children, have kids in college or are caring for aging parents there is a lot of assumption that you should be able to handle the needs of your family.
   Asking for help is the first step but after that you pretty much need to find help and figure out how the heck to pay for it. As a care-giver you can't expect extended family to just volunteer. As I write this I feel a certain amount of guilt. I feel a little bit like a hypocrite. Right now my only living grandparent is in need of more hands on care. But I don't want to bathe her or feel responsible for her. I have small children to care for, to get up in the night for, to teach. So I don't want to take care of Grandma. I'm already care-giving 24/7. I have to figure this out. Yes, if push comes to shove I will help; I have helped. But these days especially I don't have unlimited flexibility. Gradually, I am coming to terms with where I stand as far as my own willingness to be available. I know I should do something but to what degree? I've been there before with my grandma who had Alzheimer's and I don't want to be expected to help. I don't want to feel responsible. When I was living at home with my parents and grandma we were all responsible because we were all there. And mom needed us. She needs us now but now I am an adult and a parent and a spouse. There are other people who need me too. Soon we will be talking more about this with my parents and one thing I have come to understand for me personally: asking for help is very different from expecting help.

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.

Thought for Today: 10K Personal Best, 3 Birds, and a Poem

   On Sunday I went for a run. I never run on Sundays. It's my official rest day. But this weekend needed a run. My son came down with the dreaded Norovirus, a virulent bug with days and nights of vomiting that warranted a trip to the doctor on Saturday morning. The day went by taking care of him and my household and my plans for a long run and then a massage later on went to the back burner. Sunday morning I took my daughter to church and when we got home the rain had cleared so I thought what the heck I better go for a run now because who knows what the week may bring. I put on my running gear, grabbed my watch and my water bottle and headed out for an 8 miler. I got into a good pace within the first mile and boy did it feel good to get out of the germ filled house and knock out some stress. My thoughts started to clear from the messes I had cleaned up and the smells I had smelled for the past four days. I all of a sudden noticed a Great Blue Heron swooping down to its nesting area. A couple of miles later I saw a tan colored hawk circle a tall tree. Then at about mile six the biggest Red-Headed Wood Pecker I have ever seen dove down and landed on a bush in front of me. I love how nature can really speak to me and remind of God's goodness. "I lift up my eyes to the hills. Where does my help come from? from the Lord the Maker of heaven and earth." Psalm 121. A poem I wrote about fifteen years ago came to mind. It was a different Spring day but similar thoughts were running through my mind back then. I was reminded to keep looking up, to keep going pushing forward, to keep forcing my head above water with God's help. My watch chimed; 10K record! Awesome!!!

On the Other Side of the Wall: Grandma-Proofing

     When Grandma came to live with us there were obvious changes that needed to be made in our home. We really could've used a Youtube video on how to Grandma-proof your home but guess what? Youtube wasn't around and we didn't know anyone personally that was caring for a loved one with dementia in their home. Now, in 2017, the average person knows that Alzheimer's is forgetfulness. The disease has gotten attention in the news and the medical world. However at the time of Grandma's diagnosis Alzheimer's was sort of a vague disease that even Grandma's doctor didn't give my grandfather and my mom too much information about. I think Grandpa equated it more with senility or mental illness and wanted to protect his wife from the scrutiny of others. His wife who had a degree in Science was no longer able to function at an adult level. She was closer to the level of a three-year old child and her cognitive abilities were fading fast. So did she have a disease or was she losing her mind? Even nowadays when some one has a brain tumor and is losing the ability to function they are met with more empathy and concern than someone who has a type of mental illness and is failing to keep up with the demands of life. For most people the logical next step to dealing with this type of situation would be to place the ailing parent in a nursing home. However, for my mom the nurse, placing Grandma in a nursing home was not an option. The decision to care for her mother-in-law in our own home was a matter of doing the right thing according to her own conscience.
   When we brought Grandma into our home we were not set up for elder- care. What the heck was elder- care? Since my sister was working out of town and her upstairs bedroom had an adjoining bathroom Grandma took that room. Mom set up everything nicely for Grandma to make her feel at home. Dresses were hanging up in the closet and her other clothes were folded and put into a dresser. On top of the dresser were her favorite jewelry boxes. She had a large sliding door to look out to the spacious yard below. The bathroom was handy giving her some privacy from "us kids". We were all set! Or were we?
   Initially, every day something new came up that we had to fix or adjust so Grandma would be safe and our home- life would be easier. Much in the same way you may need to prepare for a toddler living in your home, we had to make some changes for Grandma who was functioning at about a two or three year old level but was also elderly. Our shoes had to be cleared from the hallway so she wouldn't trip and fall. Railings were installed on the stairways and the bathroom was remodeled with a walk-in shower that had handles and seats built in. There was also a drain in the middle of the bathroom floor in case Mom couldn't get Grandma into the shower at all and she had to wash her while she sat on a shower chair. Dad installed a latch on the outside of Grandma's bedroom door. To people not familiar with dementia it would seem cruel to lock your Grandma in her room but for us it was practical thinking and a necessary safety precaution to keep her from falling down the stairs in the middle of the night.
   After making the physical changes to our home we also had to change our thinking and always be mindful of Grandma. When she went into the bathroom someone had to stand outside the bathroom door and make sure she was okay and then once she opened the door to exit we double checked to make sure her stockings had been pulled up and her dress was fixed. If she was walking around we had to make sure she didn't get lost and end up standing in a closet confused and in the dark. Every now and then she would get stuck someplace in the house and we'd hear her yelling "Where am I? Where am I?" and someone would go to the rescue. Once, when we had some relatives stay for a few hours while we were out, Grandma vanished. They looked around for her but it took them quite a while to find her in the corner of a bedroom hidden by a clothes rack. We had to routinely check around the house and make sure things were safe. There was a hatch staircase in her sitting room floor that had to be shut down every time someone came up those stairs. If the doors in the floor were left open it would be easy for Grandma to walk straight ahead without looking down and fall the entire flight of stairs to the office area below.
   One of the major adjustments we made to accommodate Grandma living with us was arranging our schedules so that someone was home at all times to keep tabs on her. All of us were busy all the time. Like any other family we had our daily work obligations and appointments.  At this point I was eighteen, living at home, working at an office as a dental assistant, cleaning for four regular clients and doing a correspondence type of post high school education. My younger siblings were doing junior high and elementary home education and my two older siblings were away working out of state. My mom was forty-eight, my dad was fifty-one, Grandma was eighty-four and Grandpa was eighty-six. Dad was away at work all week and Mom worked weekends. I was working a couple of days a week and my brother was also busy with odd jobs. There were music lessons, church, school related activities, social outings, all types of places we needed to go but who was going to be home with Grandma? I'm not sure we ever got used to rearranging our busy schedules. It was never convenient. It was always a pain in the neck to have to figure out who was able to be home and when. After a while Mom gave me an incentive to stay home and Grandma-sit and that incentive was called five dollars per hour.
   Those were the Stage One changes we made. Gradually we learned to be a little more flexible, we worked together, and figured things out. Mistakes were made that could have been life-threatening but in the end nothing horrible ended up happening. Life was different that was for sure. We had all changed even from the start.
 
 
 

On the Other Side of the Wall: The First Morning

   The morning after Grandma moved in with us my two younger siblings and I sat around the kitchen table doing our school work. Grandma wandered around the house muttering to herself. Mom tried to get her to sit down at intervals so she could rest for a while but eventually she would get up so she could resume wandering. After a while Mom told her loudly, so she could hear well enough to understand, to stay in her chair. We could tell she did not appreciate being told to stay put. Maybe she thought she was being yelled at when Mom thought she couldn't hear her properly. Or maybe she didn't like being told what to do. She argued back, pouted, then got up again to keep walking. No wonder she was skin and bones. She never rested. We sat at the table, rolled our eyes at each other, and continued our lessons.

  We made it through that first morning with Grandma wandering around the house feeling a little lost. But we were all a little lost; it was early days in the realization of what Alzheimer's truly was.
   Up to this point we had experienced Grandma's condition from a sort of window shopping point of view. We looked in on her. We saw the disease. We carried it around on our own shoulders for a little while and then left it on the rack. It was a totally different experience to take IT home and keep IT. Now we actually had to care for it. But how?

 

On the Other Side of the Wall: The Meeting

   She walks in circles around the living room, quietly asking herself, "Where am I?" over and over. Slowly parting the sheer curtains she presses her face to the window. Bright headlights beam through the thick early darkness of the fall night. "Is that Nat? Is that Nat? Is that Nat?" Somehow as she squints and tries to see the cars coming down the road she knows that this is not really her home. Nat must be coming soon to take her back home. "Where am I? Where am I? Where am I?". Six times she peers out the window looking for her husband. Will he ever come? Will Grandma ever know where she is?

   At 7:00 that evening I was sitting in the living room with Mom and Dad. They explained the decision they made to have Grandma come live with our family was made out of necessity. Grandpa was no longer able to care for Grandma by himself at home so she had to live with us. Today was the logical step they took for her. Our big house was only thirty minutes away from Grandpa. Our other relatives lived farther away and were unable to care for someone in their homes. Mom's nursing experience made her the primary care-giver and myself along with my siblings and my Dad were to be the helpers. Dad said that Grandma was his and Mom's responsibility and if I had any concerns I could talk with them. Our conversation was simple and brief. Maybe Grandma would live with us for two more years until her health completely failed but until then we were going to take care of her. I knew it was the right choice. We had to do this as a family. But for me the idea of caring for Grandma held as much light as the heavy darkness outside. 

Thought for Today

  Today I am writing from one of my favorite coffee shops. It's warm here, the coffee is rich and HOT, the aroma of grilled breakfast sandwiches fills the air. We've been without power for three days and counting so I am thankful for time to get out of the house, alone without children, to relax and get my perspective back. It was a cold morning aside from our living room where the gas fireplace is keeping us comfortable. As I stood at my kitchen sink washing my hands looking at the thermometer outside the window which read the delightful 10 F, my eyes drifted down to a 3x5 card resting on the window sill. In my own handwriting in black ink it read, "I will extol the Lord at all times. His praise will always be on my lips." Psalm 34:1. I had to laugh to myself. The words AT ALL TIMES and ALWAYS hit me. This morning I wasn't thinking very clearly after another night of less than sound sleep trying to tune out a neighborhood of generators rumbling loudly. But those words were a shot of spiritual caffeine. Even when my french coffee press breaks, my contacts poke my eyes, my clothes feel wet when I put them on but they are just cold, or my water bottle is frozen solid when I grab it in the car for a drink..even those irritating moments are in the extol the Lord at all times cart.

Favorite Things!

   Today's favorite thing at the top of my list is something that on any other day might just be ordinary. But today? Yes, today it is keeping my family and I comfortable and actually able to be at home. And the lucky winner is....our gas fireplace! We have been without power since Wednesday at 1:00 pm due to what will be remembered as the Wind Storm of  March 8th, 2017. High winds tore through our area and caused trees to uproot and power lines to disconnect. But we are toasty while camping out in our living room thanks to our little fireplace that keeps burning bright and HOT.

On the Other Side of the Wall: Coming Home

   What's crazy about the day we brought Grandma home to live with us is that she had no idea where she was going. She knew we were familiar faces but she didn't know why. She sat still in the car mumbling in a slow rhythm her usual question, "Where am I?" over and over and over again. The scratched record player of her memory getting stuck and playing the same phrase hundreds of times in a row. In a way the dementia protected her from the anxiety of leaving her husband and her home where she had lived for over fifty years. The person she loved most and relied upon, all of her treasured collections, her piano, her sense of familiarity were all being left behind. She was actually calm as we drove away. Grandpa was standing there in the driveway, his heart breaking a little bit more, tears in his eyes and Grandma was okay with it. She was not suffering.

   For me personally this was the beginning of Alzheimer's Disease. We had been helping Grandpa with Grandma's care for two years but we weren't living with the disease. Grandpa was grieved seeing her go but set free at the same time. The crushing burden of holding onto his dear wife who was drowning in a black churning sea of disconnection from the world around her was being lifted. He was trying so hard to keep them both afloat every single day. Waves of exhaustion and frustration were overwhelming him and he was too tired to swim to shore. It was time for that burden to be transferred to somebody else. Now it was our turn; my parents, my siblings, and me were jumping into the sea.

   The car ride home was quiet. Slowly we pulled into the gravel driveway. Mom helped Grandma out of the car and led her into the house. We thought we were bringing our grandma, mother, mother-in-law, who had a disease into our home. In reality Grandma was not the only one who was going to be living with the disease. All of us were going to be living with it. Gradually, with the passing of each day, we all had a part of the disease as care-givers and helpers. Alzheimer's sat with us at the dinner table, kept us up at night, and followed us around the house during the daytime. Alzheimer's was alive and well on the other side of my bedroom wall breathing heavily, rattling the locked door, yelling at the face in the mirror. 

On the Other Side of the Wall: Silver Linings

   We all have our struggles. For most of us it is a very real struggle to get up out of our cozy beds early in the morning to start a day that will be full of ordinary stress. We get the kids dressed and off to school, rush to work, deal with coffee spills, snowy weather, wait in the never ending line in the grocery store with a screaming toddler. Life is full of annoyances; fender-bender types of situations that mess up our days, leave us irritated, and make us want to kick the dog, slam the door, and eat three enormous pieces of rich chocolate cake with dark chocolate icing as soon as possible. But we do our best, right? We get out of bed, try to be nice, try to have a good day, And the sun comes out, the traffic is moving along faster, we get our favorite parking spot, the kids actually make their beds without being reminded ten times, the baby takes a long nap, there is a beautiful card in the mailbox from a dear friend. But how do we re-act to a real bump in the road? A life-changing sort of problem that comes up and slams into our lives head on?

   One way of coping with a life altering problem or even the day to day "normal" problems is to look for the silver linings. That's where we find hope and and the good in life's trials. You have a new perspective on what is really important and begin to see how things are actually working out. After hanging in there your faith deepens, your relationships are more meaningful than ever before, in general you have a new perspective on life. However, that fresh view of life's challenges sometimes requires some distance, some time and then we can see how the jagged pieces fit together and the picture comes into focus. The blur from unanswered questions becomes clearer than when it was up close consuming our thoughts. 

   When I look back at that valley of Alzheimer's Disease, frankly, I don't see a beautiful landscape. For the most part I still have questions that won't be answered this side of heaven. However, I do see a few rivers that cut through the valley and keep flowing, carrying meaning into the plains of my life beyond that experience. For me one of those rivers, or silver linings, that I can now see after the space of time is my grandpa. When we started seeing him every week I had the opportunity to get to know my grandfather as more of a person and not just the somewhat feared head of our extended family.
   In many ways Grandpa and I had similar personalities which created a bond between us. Both of us tended to keep our true feelings to ourselves. I knew Grandpa loved me by the way his face lit up when I walked into his house and his enthusiastic almost surprised way of saying "Hi-ya Sarah!". He knew I loved him when he teased me and I teased him back. I wanted to be with him. At the messy dining room table we talked about the history of long-lost family members he had hunted for and discovered on his treks to libraries and cemeteries along the East coast. Next to his cherry wood desk he had a tall green file cabinet that held bulging folders of information on both sides of his and grandma's family tree. One day he pulled out a file and told me about a Hessian soldier named Chester Mack who married into the clan during the Revolutionary War. He even had a certificate with Chester's name on it. Once, when I was cleaning, I found an antique red family photo album held together by masking tape on the binding. Grandpa pointed out his parents to me who posed with serious expressions on their faces despite their youth. For the first time in my life I became acquainted with my great grandparents through the album grandpa had never talked about before. I asked him if I could borrow some of the pictures to make some copies but he wouldn't allow me to. However, at our next visit he gave me copies to keep that he had made at the library.
   I treasure the time I got to spend with my grandfather after we became more involved in Grandma's care. She needed help but Grandpa needed us just as much. He had lost his beautiful wife of almost sixty years to a disease that had left him with only a very small fraction of the woman he loved. He was there every day missing her. Who knows?  Maybe I was as much of a silver-lining to him as he was to me.

On the Other Side of the Wall: Early Days

One of the hardest parts of Alzheimer’s Disease is how long and drawn out it can be. Yes, we had observed the slow decline of Grandma’s overall health but the early signs of dementia we missed. Mom asked Grandpa when he noticed for the first time that something was not quite right, that there could be something serious going on with Grandma. When did he think her Alzheimer’s started for her? He said when she was 71 and they were on a trip and she all of a sudden had no idea where she was. He was shocked but let it go. For Grandma Alzheimer’s began as confusion or sudden forgetfulness. Over the course of ten years I lost my real Grandma. When I think of her during my childhood and early teen years I remember little square calendars she would let me take home from her house. I can smell the juicy Thanksgiving turkey she carved at the kitchen counter while she and I secretly sampled the best pieces together. She always wore bright lipstick and her black hair was curled under. On Easter she gave my siblings, my cousins and I beautiful brightly colored Easter baskets with chocolate bunnies, plastic eggs with quarters and dollar bills inside, jelly beans, and yellow marshmallow peeps. Her garden was filled with pink peonies, bleeding heart plants, and purple phlox. There was a tall white trellis at the entrance with climbing red roses. She proudly gave us tours, pointing out each flower when we came to visit. Grandma had a small birthday book to remember all of our special days and every year she asked me for a birthday and Christmas wish list. One time when I was in first grade she came to my school and gave a “talk” about her extensive butterfly collection. Grandma was generous and intelligent. She was a sweet lady to me as a little girl but by the time I was sixteen she couldn’t remember the basic details of her own life. Eventually Grandpa did take Grandma to the doctor to find out what in the world was wrong with her. But he never held a family meeting to let us all know about her diagnosis. It was a private matter until mom was downstairs in the basement with Grandpa one day and she finally asked the big question: “What is going on with mom?” And he answered, “Alzheimer’s”. That was that.

On the Other Side of the Wall: Batavia Days

I was about sixteen years old when my mom realized we had to do something to help Grandpa whether he asked for help or not. We started going out to their light green house in the heart of Batavia once a week. On Wednesdays my younger brother and sister had their piano and cello lessons nearby so it was convenient for Mom to drop me off at Grandpa and Grandma’s, take the kids to their lessons and then return in time for lunch. Grandpa was usually still upstairs in the bathroom when I arrived. It took him a while to get ready and he may have taken extra time in the bathroom knowing that Grandma probably wouldn’t come in to bother him. Eventually he came downstairs to start in on the important tasks of the day. Sometimes he was already busy. Frequently I’d find him sitting on his kitchen stool tying string around the bundles of papers he was preparing for the re-cycling bin. He was a professional re-cycler. He made a can stomping device from a piece of ply wood. The wood would be placed on top of the can and he would slam his foot down on it thereby crushing the can which was thrown into the blue box. When he saw me he cheerfully boomed HI-Ya Sarah! Then he explained to me exactly how to do what he was doing. If he was busy on the phone lecturing an unsuspecting costumer service representative about how they should manufacture toaster parts better then I would start with my own busy work. The dining room table was always covered with junk mail and newspapers. I tried throwing away scraps of paper and envelopes when Grandpa wasn’t looking and neatly piled up what was left. Next I cleared the saltine cracker box, silvery-pink canisters with the black tops, butter dish, and address book from the counter-top. All of Grandpa’s envelopes with notes and phone numbers scratched onto the backs of them got stacked neatly in the order I found them. The counter was wiped with a sponge and everything was put back in its place. I cleaned the stove, washed dishes, dusted and vacuumed. We tried to do what we could around the house to not only help but to care for Grandpa which I think meant a lot to him. As soon as the trio returned from lessons we started preparing lunch. My little sister disappeared upstairs somewhere trying on Grandma’s earrings and high heels in secret hoping not to get caught. My brother and I opened cans of vegetable soup, tuna fish or boxes of macaroni and cheese. One of us cooked and the other would set the table. Mom took Grandma to the bathroom to wash and dress her and Grandpa escaped to run errands or work outside. Sometimes it annoyed mom that Grandpa would sit down for lunch just as we were finishing up. He had good reason to take advantage of the time we were occupying Grandma. He was preserving his own sanity. After lunch Grandma sat down at the piano to play loud versions of ‘When We All Get to Heaven’ or ‘Blessed Assurance’. She played the piano more for us when she was sick than she ever did before when we visited. The TV was no longer able to compete with those strong fingers playing song after song. At the piano she was happy and reliving her youth as the prestigious organist of Asbury United Methodist Church in downtown Rochester sixty years previous. It amazed us that she remembered how to play when she couldn’t remember how to dress herself. I guess whatever you practice and love the most is probably what your brain holds onto most securely. Sometimes we stuck around to watch I Love Lucy, Perry Mason and The Dick Van Dyke Show on TV. By 4:00 pm it was time to give Grandma a kiss on the lips and Grandpa a hug. So that was our weekly routine, which eventually turned into bi-weekly, at Batavia. As the months went by Grandpa allowed us to take over some of his own jobs. We cut the grass, trimmed the bushes, picked the raspberries and Grandpa left to go wherever he needed to or spent more time in the bathroom. Two years later it was time. Grandpa was tired and it was only the beginning of Alzheimer’s Disease.

On the Other Side of the Wall: Saying Goodbye

He stands in the doorway heavy tears running silently down his face. Mom pulls the seatbelt across Grandma who sits in the front passenger seat of our small gray economy car mumbling, “Where am I?” over and over. Crammed into the back seat, my younger brother, little sister, and I glumly keep our thoughts to ourselves. Today is a dismal fall day only underscoring the feelings we all share. She was leaving him after fifty-seven years of marriage; forced to by dementia that Grandpa could no longer tolerate nor cope with. 

For ten years we had been losing our Grandma. She couldn’t remember where she lived, how old she was, how to cook, brush her teeth, take out her partial denture or rinse her mouth. She wasn’t allowed to shop alone, couldn’t be trusted to walk outside and no longer happily made Thanksgiving dinner wearing her red and white striped apron. When I was a little girl I stood on the stairs behind the kitchen sink while Grandma was washing the dishes. I asked her how old she was. “A woman never tells her age” she replied. In reality she just didn’t remember. Caring for her alone the last few years, Grandpa had helped her bathe, dress and comb her hair. When she first started getting confused he never took her to the doctor and never confided in family members or friends. How could he shame her by revealing to others that she was losing her mind? So he faithfully sheltered her and let us blame him for her failing health. She was dropping weight and no longer had her usual healthy glow; he must not be feeding her everyone thought. He hunted all over the house trying to find her hearing aid, wedding rings, glasses and teeth. Grandma always said, “Nat knows just how to do it.” Of course he did. He was her world. Stuck inside all day, she scuffled around the house in her red bathrobe with the falling off lace trim and dragging hem talking to the walls. Her days were spent opening and closing drawers, picking up various bells from her collection and ringing them, brushing crumbs off the table and counters and asking the same questions over and over like the drip drip drip of a leaky faucet. 

Grandpa dropped Grandma off at the hair salon and dental office while he ran errands and she had no clue where she was or what to do. Little did the beautician or dentist know they were providing an invaluable service to an elderly man who desperately needed to be alone so he could go to the post office, bank, and the store without wondering if his wife would still be in the car when he got back.