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.