April 4th #HAWMC Prompt: Creature of Habit: What good habits, (health or otherwise,) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break?
Since working with children and adults with autism and other emotional, behavioral, and psychological illnesses, I have become a huge believer in structure and routines. I think that anyone with children or persons with mental and/or physical disabilities would benefit from structured routines.
However, I am bad at taking my own advice. I have never been good at sticking with routines. I am always late; always procrastinating. I am good at making lists and planning. I am also good at setting up routines and helping others to execute their own routines. In relation to my own health, I have many bad habits. I have made isolation a habit, as well as staying in my pajamas for weeks at a time and not bothering with hygiene care either. I sleep during the day and am up all night. I attend my doctor appointments, tests, and procedures as scheduled and take my medicine as prescribed, but IBD in general, makes any schedule impossible to keep. This is a disease that enjoys being in control and the person who is living with it, is at it’s mercy. When I do leave the house, I need to have at least three hours set aside to get ready for where ever I am going. Time has to be factored in for constant runs to the toilet and time to sit down and rest; because, just getting a shower, getting dressed, and then attempting to look presentable, eats up a lot of my “spoons” immediately.
My typical day is centered around the bathroom, my bed, helping my parents, caring for the animals, being on the computer and watching T.V. Pretty boring…huh? I guess I could write about my goals for starting a healthy routine, but it would be bullshit, because I’m not currently feeling motivated or well enough to do anything right now. This could be health related, or depression, but either way, I know I’m not anywhere near adopting a routine that I can reasonably stick to…. baby steps.
So, instead, I thought I would talk about the routines I have put in place for my mother, because they have helped all of us, including her, cope with her disease, and it has helped me feel like I have gained some control in a life I feel suffocated by.
My household is affected by more than just my illnesses. We all have severe health problems. We try to work as a team. What one can’t do, someone else can. My mother, specifically, has Alzheimer’s Disease. Thus, my father and I work very hard to have her day structured, so that she has some idea of what to expect throughout the day. I have become the memory box for both of my parents, but mostly for my mom. There is a lot that goes into caring for someone with dementia. Someone must always be with them and aware of where they are, and you have to be able to sense when they are sad, provide comfort and be able to calm them when they become frustrated.
My father and I do a lot of preparation for the next day, the night before, so that my mother can still feel like she is contributing and doesn’t feel like we are hovering or giving her constant instruction or prompts. We don’t tell her anything that she doesn’t need to know, because she won’t remember it anyway, and telling her just leaves her feeling irritated. For example, my mother does not like to leave the house, so we do not tell her: “Tomorrow you are going out for breakfast with your friends.” or “You have an appointment tomorrow.” We tell her the morning that the activity is going to occur, because once she is there, she does enjoy herself. Our goal is to eliminate as much frustration as possible, for her, so that she has a chance at a more successful day. Examples include, helping her pick out an outfit for special occasions, or helping her plan and make meals. I prepare her pills for the week, every Friday night. We prepare a list for our grocery needs (I am still trying to get my father to allow me to plan the weeks meals a head of time, which would eliminate the frustration around meals…but my father is a whole other post…lol) and my father and her go to the grocery store and the pharmacy. This usually wears both of them out, but it makes them feel useful and independent. I got a white board and have a list of prompts related to the top ten things that have to get done every day and she can put a check mark next to the item after it has been completed. It is also where she writes down what time she took the dog out last. Examples of the prompts are: take your pills, eat breakfast, feed the animals, etc. I have written out instructions for all kinds of things, in case something would happen to me or in the event that I am not home (she is never left alone and she no longer drives). When I do leave the house, I call and make sure that both of them have eaten, had their medication, and that the animals have been cared for; this often requires several phone calls to make sure that they are taking care of themselves while I’m gone. Before we go to bed, each night, my father and I fill containers labeled for the animals. My mother likes to feed the animals, but she can forget that she has already fed them. So, now we have a container for each meal (am and pm) and one for treats. We keep all of the animal food hidden, outside of those pre-filled daily containers, so that they can’t be overfed. We fill the dog’s pills for the next day and clean the litter box for the cats before going to bed, as well. At bedtime, we give her pm medication to her, help her into bed (because she now has a bed rail to prevent her from rolling out of bed, which she has done several times) and make sure she has her c-pap on. Once they are both in bed, I go out into the kitchen and living room and make sure everything is put back in the right places and drawers and that her glasses are on the counter. Often things get put into the wrong drawers, especially when the dishwasher gets emptied, but she goes to the right place to find them the next time she goes for them, so I make sure that they are there. Again, this is just to avoid unnecessary frustration for her.
I’ve written almost 1,000 words, and I haven’t even gone through her daytime routine. I guess the details aren’t really important. What is important to know, is that she requires constant prompts and reminders. She needs help with the television, expressing herself, and problem solving. Her attention span is very limited. She can’t follow a conversation and most television shows. Her memory recall is less than 30 seconds. So for her, a plan, a routine, my father and I working as a team, is very important for her to have a successful, fulfilled day.
I want to say, that my mother contributes a lot to the family. She still cleans and does the laundry and she is the main person who helps me with my struggles. She is playful and very loving. Like I said, we all work together to help each other. I just wanted to show that there are some diseases that require strict routines that can actually make life easier (or at least feel easier), and some, that make routines impossible.
I do think that for myself, I need to start incorporating things into my day that give me real joy. I think that a lot of times we spend so much of our time putting out fires and just trying to stay afloat that we don’t make the time to do something that really makes us happy. I know that I don’t. It’s definitely something that I need to work on. I am also going to work on slowly adding positive habits into my life, that will help with my physical and mental health. More on that in a future post.