Out of all the tips, tricks, and techniques I use to help compensate for the dementia, notebooks have to be my favorite of all.
I have notebooks for seemingly everything. They carry everything I need to know to carry out many of my tasks…everything that my brain used to hold onto about these tasks is safely in my notebooks.
The glory of this design, for me, is that the words I put down (when I was more able) support and carry me through my mornings and into my day. At the end of the day, they support and carry me through the close of the day, and walk me to bed. In this way, I am my own caregiver.
It All Starts With A Sign
I have a sign by my bed that instructs me to “SMILE” when I wake up. The act of moving our muscles into a smile releases chemicals that alter how we greet the day. It is also part of my spiritual practice to choose the energy with which I enter my days. The smile brings me peace, and with it the recognition of my appreciation for my life and a remembrance of who I am. It is also something that I did naturally, before I became so sick.
The sign then instructs me to go the bathroom, get a cup of tea, and get my morning notebook.
My morning notebook contains everything I need to know to start my day off properly.
In the first part of the notebook I have a gentle letter to myself, explaining again that I have dementia and telling me why this notebook, and what I am to do when this notebook no longer works.
Next is a set of questions designed to test my recall and to re-cement information that I consider vital. The questions ask me my full name, my age, my date of birth, and my address. It asks how many children I have, and what are their names, ages, and dates of birth. It asks me the day, the month, and the year as well as the date. Each time I go over this information, it re-coats the neurons, re-activates the neural networks, and generally re-affirms and re-secures this information in my active memory. On the back of the page are the same questions along with the answers. I read through those too, because they code the information in a slightly different way.
On the following page is a set of unlabeled pictures of important people in my life. My daughter and granddaughter, my mom, and my other children. It has pictures of my doctor/s, my ILS worker, and the various other people who work with me. On the backs of those pages are the same pictures with their names labeled.
By the time I have finished the exercise in re-cementing this information, I generally have finished my tea.
The next section walks me step by step through my morning routine. Which starts with making my bed, gathering my phone and plugging it in, laying out my pills and taking my first dose, washing out my tea cup, going through my morning exercise/yoga routine, sitting for a bit of meditation, getting dressed (including where to find my clothes), combing hair, and brushing teeth, checking the calendar and seeing when and where my appointments, making sure I have everything I need for those appointments already laid out, and to sit down and calculate the times I will need to attend to my mom, and the times I will need to leave in order to get to these appointments. Then it instructs me to go get my phone and put the notebook back on the shelf. At the end, there is an inspirational saying that I read to myself.
Signs, Signs, And More Signs
I have numerous signs throughout my house that instruct me in various tasks I might have to do. How to use the washer and dryer, how to wash and fix my hair, what to do if I get lost (in the house), where my clothes are, to check my Go-To Notebook for anything I need an answer to.
I have time and event specific signs for if I am agitated, confused, lost, or just wandering around and tells what to do. I have a sign on my door that says if it is night, check to see that the door is locked. I have signs that ask me things like, if I am feeling yukky and it is night, that means I am tired and should go to bed.
My Go-To Notebook
My Go-To notebook has the solutions to every problem I could think of to put in there, that would otherwise take me a really long time to sort out. What to do if something happens to the house, the plumbing. What to do if something happens to my mom. What to do if I have pain. What to do if I don’t feel well. When I don’t feel well, it has checklists that I can go through to help me identify what it might be.
For me personally, I feel this is one of my most helpful work-a-rounds, because it saves me from much of the frustration, stress, and agonizing of having this disease. Without it, I would come up with the solutions myself, it would just take a really long time (a week or more). The whole time I am inside me pushing like everything on the gear in my brain to get it to turn. The relief I have from this single notebook is huge.
My Mom Notebook
I also wrote down detailed, step by step instructions for every task I do for my mom, and put these in a notebook. Generally, I still remember what I do for my mom, because it is the same each time and has been for years, but it is nice to know it is there for when I may need it. It is also helpful in case someone else has to care for my mom, if I was unable to.
I also have notebooks for each of the people who work with me. It contains their job descriptions, our contract, contact information, etc. It also contains my treatment plan, which can be helpful to revisit from time to time. It contains information about dementia and working with someone with it. It has pens, pencils, and post-its. But mostly, it contains my lists. Each time they come, I try to make a list of what I want to work on and we check it off as we go. I save the lists because not everything gets done and sometimes I forget that it even needs to get done. Indeed, one of the big problems of having workers when you have dementia, is that pretty much as soon a I assign something to them, it is off my table and I forget all about it. These notebooks are primarily for them.
Come evening, I have my evening notebook. It has everything I need to close out my day. It contains the same gentle letter to myself, and memory exercises as my morning notebook. Then it goes on to instruct me in the evening tasks. It instructs me to check my calendar, if I have appointments to get everything I need to take ready and put it by the door, and make sure my alarms are set. It instructs me to brush my teeth, to get dressed for bed, go the bathroom, take my meds, shut out lights, and lock the door. It also has a little inspirational saying that I read to myself.
On my bed is another inspirational saying that I say aloud to myself. I leave it on top of my bed so I will have to handle it in order to go to bed. Otherwise, you know, the mind likes to skip over these kinds of things. This keeps me from skipping this step.
From the time I get up, throughout the day, and until I tuck myself in at night, I am there a gentle guide, guiding myself through the rhythm of my days. My own caregiver.
Copyright August 12, 2015, all rights reserved.