Tips & Tricks For Living With Alzheimer’s/Dementia – Environment/Sensory Overload

Please note: as of this writing, I am pretty squarely into Stage 5, so some of this may not be as relevant to earlier stages. However, there will likely come a day when these words will take on a new meaning for you. As always, use what works for you. ❤

—————————-

As dementia progresses, sensory input can begin to overload one, particularly in the evenings. It is as if everything in your environment requires a piece of your brain, and you already don’t have enough pieces to go around. The result from too much sensory load and input, is agitation. Agitation in dementia, is less about emotional agitation, and more like how washing machines agitate clothes. It is movement and energy. It causes pacing.

There is a line from a song from the old break dancing days, by Grand Master Flash, that goes: “New York, New York, big city of dreams, but everything in New York ain’t always what it seems. You might get fooled if you come from out of town, but I’m down by law and I know my way around. Too much, too many people, too much. Too much, too many people, too much, Raaah!” That sort of sums up agitation from one’s environment in dementia.

Anyways, you can significantly reduce agitation and sundowning by making the environment at home more dementia friendly. How far you have to take it depends on the person needing the soothing environment.

In considering how to accomplish this, think reduce sensory input.

Energy

The energy around a person with dementia or Alzheimer’s should be calm, slow, low-key, peaceful, and soothing. Children, even calm ones, often have higher energy than the person with dementia. Even positive emotions, like excitement, can be too much. Negative emotions should be avoided altogether.

Movement

You should reduce moving objects as much as possible. Something are harder to avoid or eliminate altogether, like children, dogs, and activity, but reducing exposure of the person with dementia or Alzheimer’s to this things will go a long way in reducing agitation. Other things are easier to eliminate, like mobiles and turning off the TV.

Decorations

The less decorations the better. Think Zen minimalism here. Avoiding patterns and bold, bright colors.

Sound

Keep sound to a minimum. Even soothing music and nature sounds, while wonderful and relaxing to you, are often too much input for people with dementia. Turn off the TV, unless they are watching it. Talk less, maybe even only when necessary, in quiet, comforting voices. Shut windows, if there is a lot of noise coming in.

Light

Light is hard to balance for people with dementia.

Some have issues sorting out shadows. They may either interpret them as something else, or not be able to interpret them at all. Those who have issues with shadows will need constant light in a way as to reduce shadows…and reduce shadows that move.

For everyone else, softer lighting is best. The brighter the light, the louder it screams. But also enough light to see by.

Physical Environment

Reduce clutter. The more objects one sees, the more the brain has to sort out, and the more taxing on one’s limited resources. In the same way, grocery or other shopping, can become visually overwhelming.

Make the floors safe to traverse. As it becomes more difficult to sort out moving, reducing things that a person with dementia or Alzheimer’s has to navigate in their environment is important.

Physical Discomfort

Sensory input can come from one’s body as well. As dementia or Alzheimer’s progresses, it can be harder for a person to identify what they are feeling and why. Because of this, discomfort translates into a generalized feeling that produces agitation. So take a quick check over. Is one hot or cold, is one in pain, is one tired, did you miss a dose of meds, are one’s clothes bothering them, do you need to go the bathroom, are you hungry?

Emotions

People who have dementia or Alzheimer’s become hyper-sensitive to the emotions that people give off. If you are experiencing fears, doubts, sadness, grief, frustration, or anger when you come at us, we will react negatively in return. Part of this is no longer being able to find the right words, part is that we rely on you to know what to do (so if you are angry, then we should be angry too)…we instinctively become like a zebra and fit right in with you, so lions will not eat us, and part of it is we can no longer hold multiple thoughts in our brains at the same time…we see your anger, and there is only that and not all we know about people and their anger.

As well, people with dementia and Alzheimer’s are grieving the loss of their own lives and function. We have just as much capacity to feel, but less ability to process through how we feel. Because of this, it is much easier for us to get down. When the world also treats us as useless, it is harder to feel like one matters. In a sense, we depend on others to help us right our own emotional state as well.

This is why it is imperative that the people around us are in positive moods.

In the end, reducing as much sensory input is key to controlling agitation.

Agitation is generally worse in the evening, so preemptively keeping evenings low-key and quiet will go a long way to reduce issues.

It can be very hard to get away from noise. The evenings in my house can be very challenging for me. My mother listens to the evening news, very loudly. My daughter and granddaughter often have the TV on and are playing in an effort to keep the baby awake until bedtime. When I go outside, the evening traffic of people coming home from work, and planes going overhead every 30 seconds, and trains. Even the sound of the wind in the leaves hurts. I dream of a plain white, sound-proof, room that I can sit and sleep in for hours for peace from sensory input.

When I am not agitated, I can handle more input. Mornings being the best.

Copyright August 21, 2015, all rights reserved.

Tips & Tricks For Living With Alzheimer’s/Dementia – Your Budget

I have dementia (stage 5), physical health issues, and care for my mother, my daughter, and granddaughter. Many ask me how I do it. My answer is that I do it with heaps of supports and adaptations in place, that’s how. These are things that I created myself, and will one day publish into a book, and I have come to think of them affectionately, as ways in which I am my own caregiver.

Tips & Tricks For Living With Alzheimer’s/Dementia – Budget

Of the many ways I support myself in my continued functioning has to do with having created a Master Budget, but it is not just a budget. What it is essentially, is step-by-step instructions that walk me through the process of paying my bills each month.

Step 1 In Preparing A Master Budget Plan

We looked at all the bills for the year prior to the transfer. Most bills are fairly fixed, but for the ones that fluctuate through the seasons, we calculated using the highest range…so that, if the bill was high, I would have enough to cover it. If it was lower, then I would have extra money left over (which is always nice). We added them all together.

Next, we subtracted the bills from my monthly income. Because I am on disability, I have a fixed monthly income. Although all the bills total nearly my whole income, I felt good (safe) knowing that I at least have enough to cover all the bills, with a tiny remainder for food and necessities. It is a very tight budget, and no room for error.

Step 2 Creating The Plan

Next, I needed literal, step-by-step instructions of what to do and when to do it, or I would get lost in the process. I needed help to break this down into what I do first, and when; what I do next, and when; and so forth. My ILS worker helped me to do that.

My plan looks like this:

* The first step in the plan, is to call the bank and make sure that I got paid the amount that I should get paid.

* Next, transfer money to savings for all non-monthly bills (the monthly savings amounts are pre-calculated).

* The next steps are to use my phone to pay all the bills I can that way.

* Next, I must wait for the two re-occurring auto-payments.

* Finally, on the 10th or so, I call the bank again to make sure all the bills went through, and that I am still in the positive.

The plan has all the dates/amounts/etc. details in it, and walks me (literally) step-by-step through each task.

There are some bills, like property taxes, that are not paid monthly. When these come due, I have to add it to the bills I pay by phone.

So far, this works perfectly for all the regular bills. This would not work for anything unexpected.

Step 3 How It Works

It works because I don’t have to actually balance anything. Although, I still do try to do the math, I don’t have to. The magic in that is that we used the highest amounts the bills would ever be, so I will always have enough…unless something strange or unexpected happened.

It also works because it is the same thing each month. The regularity helps a great deal in that it is now a pattern (like a cow path, the more I traverse it, the deeper it becomes, and so the harder to traverse any other path than this one).

It can be very confusing and strange for me to know that I need to call and pay the bills, but I trust my budget plan and that it says on these dates I do these things, and I always feel the vital need of these tasks. So, I don’t need to understand the bills, or the amounts, I just need to follow what I told myself to do…and I will be ok.

So far, it works great…for me.

Copyright August 14, 2015, all rights reserved.

Tips & Tricks For Living With Alzheimer’s/Dementia – AM / PM Notebooks

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.

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.

Worker Notebooks

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.

Evening Notebook

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.