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.