“Signs” by Five Man Band
This weekend I placed signs in my yard. Signs for the Walk to End Alzheimer’s in our area. These amazing events are going on all throughout the country over the next month or so. They are the primary fundraising events for the Alzheimer’s Association. Sticking the sign in my yard, and particularly that sign, when we are at the time every four years that I usually am putting a presidential candidate’s sign in my yard, brought me back to 2008 and the time that my mother was living with me. Or more appropriately, with “us” since my brother Richard had moved back from New Mexico to care for my parents in my home. My son Ken was with us too, and also my other brothers also came to help out and give Dick and me a break.
My mother was an extremely well-read and intelligent woman. So when she was in the decline from Alzheimer’s, reading was one of the things that remained with her even into the later stages of the disease. As caregivers, we used that to our advantage. As many caregivers do, we often found ourselves repeating things because mom would ask about something over and over if it were an issue she was concerned about. We learned that if we wrote down the answer she would find it for herself. After the fourth repetition of “now what are we making for dinner?” I would write out: “Dinner Menu for Tonight: Baked Chicken, Potatoes and Salad. Carol is cooking. We eat at 7.”
The handwritten menu was really more for my sake than Mom’s. She had been the domestic commander-in-chief for 60 years. She was in charge of all the “washin’ cookin’ and cleaning.” It was completely natural for her to be concerned about what was going to be done for dinner. And it was completely natural for her to want to ask about it. The dementia simply took away her ability to remember that she had just asked five minutes before. It can be an extremely frustrating situation for a caregiver, but after awhile we took it in stride, and coped with things like written menus. My son Ken took the opportunity to try out different answers sometimes. I remember him telling Mom – in the space of a half hour – that we were having frog legs, squid and brussel sprouts for dinner, just to see how she reacted. Squid got a quizzical look. But in any event, it was usually easiest just to keep answering, and try to find something to change Mom’s focus. I feel sad when I see a caregiver chiding their loved one with “You just asked me that question!” Although I was there at first too, until I learned that only made Mom feel bad and didn’t stop her from repeating.
When I think about it, the repetitive questions were really the first signs of Alzheimer’s that we picked up on, well before the time that Mom and Dad ended up moving in. The Alzheimer’s Association has a brochure explaining some of the signs of Alzheimer’s, and you can find it here.
Mom would often communicate in writing to herself or to us, with the word “SAVE” written on important papers or “READ” written on notes to us about how she was feeling, or her “reminders” to make us feel more “at home” in “her” house. I kept one of my favorites and have posted it here, since it truly captured the Mom of that time. “Bless you.”
While the signs we tried were often effective, they did backfire from time to time. Mom loved my two dogs, Big Jake and Little Jake. She also loved to feed them, and forgot if she had just fed them 5 minutes before. Both dogs put on several pounds within the first few months of mom living with us. We developed a series of signs to help the situation. On the dog food box: “Velma, We feed dogs at 7am and 7 pm…..” In a brilliant moment of inspiration, I enlisted our vet to help. Dr. Beatty wrote a letter on his letterhead, in large font. “PLEASE DO NOT FEED TABLE SCRAPS TO THE DOGS. Dr. Beatty” This was taped up on the wall near her spot at the dinner table, where the scraps had a tendency to “drop” from her hands to the eagerly waiting dogs. When I caught her in the process of palming a treat to the dogs, I would point to the letter. I would explain the dogs are on a special diet. Usually, she would understand and say “Oh. Alright,” and put the scrap back on her plate. But sometimes, if she were in a particular mood, when I would point to the sign, the response would be (sneer) “That Doctor Beatty. What does he know. All he wants to do is sell expensive special dog food.” Followed by a “plunk” of the scrap into the happy dog’s mouth. The sign’s demise is evident in the picture here – she ultimately decided it was best to simply rip it off the wall, crumple it up and throw it away.
When mom’s activities took a somewhat dangerous turn, I thought I could stop it with “strongly worded signs.” She was always concerned about energy use, and any light had to be turned off, any flashing light had to be dealt with. Which led to mom getting involved in some electrical misadventures. I came home one evening to find she had evaded Dick and managed to disconnect my entire internet system. Since we had internet based phones (well, until the day after this happened and I reinstated land lines) it was particularly unnerving that she had dismantled our ability to get emergency help when my dad was home in the final stages of cancer. So a few “strongly worded signs” were posted. With limited effect. In the wee hours one morning I was awakened by Mom standing next to my bed holding out my laptop (which was already emblazoned with the “Velma: Do not touch this!!!” sign) exclaiming “I just can’t get this little flashing thingy to turn off.” Sigh. So much for the strongly worded sign.
That event in and of itself was one of the signs to me that it was no longer completely safe for her to be unsupervised for any period of time. Her obsession with lights and disconnecting things might lead her to a dangerous situation. Signs like these are worth paying attention to as a caregiver, since they point the way to the need to re-evaluate things like supervision and possibly even the living situation. When the time came for Dick to go back home later that year, as a single working mother who needed her sleep, I ultimately decided I could not care for mom at home any longer. But that is a story for another post.
As we moved into August of that year – 2008 – it was time for me to put out the traditional presidential candidate signs. I live in Ozaukee County and often feel like the lone Democrat in a sea of Republicans. So it is important to me that I show my support for the Democratic candidate. I was especially proud to post my OBAMA sign, and in anticipation that the sign would be stolen, I ordered a batch of three. Mom and I enjoyed the moment, when I explained he was the Democrat running for president. ( Although Mom was born to a Republican family, she was Democrat all of her adult life since marrying my dad. She was active in politics and in political campaigning. When I was young, she got a kick out of posing me and my friend Laura – daughter of Republican neighbors – with McGovern signs. Laura’s parents were not amused.) And Mom was tickled that Candidate Obama was black. My parents were ahead of their time years ago in Whitewater, and offered a scholarship to one of the first black students at the University of Wisconsin Whitewater. Derek lived with us while he went to school. So Mom was delighted that a black man would be a presidential candidate. “Obama! What a beautiful name!” she exclaimed.
Our joy soured a couple days later when the first sign disappeared. “Assholes” I muttered against some unknown Republican vandal. I marched into my garage and pulled OBAMA #2 out of the trunk of my car. I placed it in the ground, in the same place.
That weekend, I completed something I had decided to do just for me. When Dad was ill, and we were in the throes of caregiving for both parents, somehow in the early months of 2008 I got the crazy idea that I should train for a triathlon. Training began with me riding an exercise bike in my basement, while dad smoked his pipe. As spring came around, I tried jogging around our lake in the morning. I kept working at it as a way to burn off the negative kinds of energy that inevitably come with caregiving. Dad died before I completed my goal. But I did it in August when I finished a sprint distance triathlon. I felt him beaming with pride. When I got home, Dick and Mom had filled the wall of my garage with……SIGNS……..signs of joy and good wishes. Mom loved those signs and was so excited, even though she didn’t know what I had done. She knew we were celebrating something big.
In the excitement of the triathlon, I didn’t realize until later that weekend that the OBAMA sign was gone, again. Nothing could bring me down, so I planted another one in the ground.
In the middle of the work week, I came home and caught the thief in action. As I pulled into my driveway, Mom gave me a cheery smile from the front yard where she was “cleaning.” She had a broom in one hand, and the Obama sign rolled up and tucked under the other arm. My mother, the lifelong Democrat, was stealing my signs.
After absorbing the irony on so many levels – that I had falsely suspected Republicans who had done nothing wrong, and that Alzheimer’s had robbed my mother of her strong political identity – I decided the only solution was a sign on the sign. I put the Obama sign back in the yard, and put a postcard on top of the sign saying “Velma, please leave this in the ground.” It worked, temporarily. Which is really the best we can hope for with some of our little caregiver tricks. When the last sign disappeared, I gave up. It was over a year before I found where she had squirrelled them away.
Back to the sign in my yard today. It is a sign of the fight against this terrible disease that turned my mother into a sign vandal. It stands for help for caregivers that try all kinds of things – signs, pictures, music – to maintain that communication and connection with the loved ones who are falling away. It is also a sign of HOPE. Hope that there will be a cure. There are more and more positive signs, thanks to the efforts of the advocates at the Alzheimer’s Association. Increased research funding. Positive research developments. Greater awareness. Signs we will keep looking for.
In a few weeks I will take up these signs and replace them with a HILLARY CLINTON sign. And when I do, I will think of Mom and cry a little, like I know I will every four years. I know that the experiences as a caregiver, happy and sad, stick with me in a way that few other experiences do. And they give me the will to fight for a cure.
Sign up for a walk in your neighborhood. Do this. Can’t you read the sign?
To find the walk closest to you, click Here.