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.