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social, health, political imagery through the lens of George J Huba PhD © 2012-2017

Posts tagged caregiver

If you have not read the Introduction to this series of posts, it is important that you read it before this post. Click here for the Part 00 Introduction. This post is part of a series of more than a dozen posts.

I worked on understanding health and social service programs, especially for the disabled, poor, disenfranchised, and traditionally underserved as a program evaluator for about 25 years. I was very good at it and worked with hundreds of programs spread over most US states.

In writing about my activities to achieve stability in my dementia and maximize my quality of life, I am going to employ the tools of program evaluation to describe what I was trying to achieve, what I did to achieve my goals, why I did various activities, and which parts of my interventions seemed to help me the most. No, not in this post but in a series of more than a dozen posts.

In this post I will start by describing the activities I designed for myself and did throughout my period of diagnosed dementia over six years of living with the disease. In subsequent posts, especially Posts 02 and 03, I will discuss the outcomes of my activities. After that, I will address some of my activities — and especially those that “worked” extremely well for me — and describe them in depth, show how other individuals might use these methods, and how dementia caregiver and healthcare systems might be built around them.


The image below is a mind map. Should you not be familiar with how a mind map is drawn and read, please search this website for posts on mind mapping using the search box. Or, go to the home page by clicking here and look at the list of pre-defined searches.

A very simple set of rules for reading a mind map is as follows.

  1. Start at the center of the diagram. Each of the topics (ideas or major branches) that come out of the center represents an issue. Important information about the main issues is given as a series of branches. The organization is in an outline or tree where large branches divide into smaller branches and smaller branches divide into even smaller branches.
  2. Think of the map as a clock face and start at the 1 o’clock position (upper right corner). Read outward from the center along the branches and sub-branches to see how ideas and information about the topics can be arranged in a hierarchical or tree structure. [If you could go up a huge fire truck ladder and look straight down, you would see a structure of tree branches that looks like a mind map. When we study or read a mind map, we are looking at a whole tree — set of information — and then seeing how small and more specific information spreads from the trunk.]
  3. Go around the map in a counter-clockwise manner (to 2 o’clock, 3 o’clock, etc.), following the branches down to their branches and their branches and finally to twigs. Remember that we are looking down at a whole idea [or tree] and its branches and their branches in order to understand how the information represented on these branches goes together and what the most important information is.
  4. The mind map is thus a picture of major ideas followed by its major subdivisions or branches and sub-branches. The “big ideas” are attached directly to the central issue.
  5. A mind map is a way of showing in an image how a set of data pieces or ideas go together.
  6. The pictures, color coding, and fonts are used to designate what is the most important information in the mind map. When you are trying to remember or organize or determine priorities, the pictures, color coding, and size of the fonts can help you store information in “visual” parts of the brain and then retrieve it by thinking about pictures, the color coding, or size-importance of the information.

Click on the mind map to expand its size and zoom to various portions of the map.

 

As you can see, I tested app after app after app on my Mac and iPhone to see which could help me. I read all about how to mindmap and draw sketchnotes and I practiced and practiced. I learned to read “dog” and taught my Newfie to understand “people.” I doodled, watched the news, built a highly-rated social media following of more than 140,000 individuals interested in healthcare, dementia, visual thinking, and 100s of other topics from around the world. I went to concerts, watched movies, and cheered for the two local universities with huge sports programs. I engaged some new parts of my brain. I thought in pictures.

  • I HAD FUN.
  • I LEARNED MANY NEW THINGS THAT STRETCHED MY BRAIN INTO NEW CHANNELS.
  • I BUILT COGNITIVE RESERVE.
  • I THINK I PROVIDED NEW INFORMATION TO PERSONS WITH DEMENTIA AND COGNITIVE DECLINE, CAREGIVERS, HEALTHCARE PROFESSIONALS, AND THE GENERAL PUBLIC. I FEEL GOOD ABOUT THIS.
  • I HAD FUN.

Stay tuned, the interesting stuff starts next.

Have a good day.

A phrase you have heard thousands of times (especially if you have lived in California as I did for 30 years). If you have dementia you may groan or the statement may make you angry or you might make a pointed comment back.

Chill, Dudes and Dudettes.

OK, I get it (well actually have gotten it for a number of years since diagnosis). There may not be a 100% good day for you anymore if you have dementia. But how about a perfect (or even good) 20 minutes having coffee with a friend or an hour solving a puzzle with a grandchild or 100 minutes watching Guardians of the Galaxy 2 complete with a refillable tub of popcorn. Yup, these periods of a good day may be followed by a period of frustration or not being able to remember something or difficulty doing a task of daily living.

Use the Force, Luke.

Good moments can be great moments if you let them be. They may last only for few minutes or an afternoon, but given that your brain is “sick” they are a huge gift and blessing. Focus on what is happening to you now, try to not let the bad upset you unduly, and try to enjoy every moment for every second possible.

You may master the Force. You may feel better. Is there a better use of your time?

Focus on what is, not what was.

Click the image of the mind model (mind map) to expand it.

Living with dementia is all about improving quality of life (QOL). Treatments to fix up your brain are still in development. They will not happen in my lifetime. But, as I always suggest in this blog, there are some ways of using simple cognitive and behavioral methods that may make your life (and that of your family) more pleasant. When you have dementia, a better day is priceless.

There are several products on the Apple app store for iPhones and iPads that claim to promote electronic communications among patients, family members, and paid caregivers. In reviewing many, I found them — as a group — to be somewhat expensive and typically fairly difficult to use (by me, a member of the patient target group with a PhD and 25+ years of software development experience).

I have carried an iPhone and iPad with me almost continually for the past 10 years. I have always considered the voice control app Siri to be something of a “bar toy” that you can ask questions like “who won the 1923 World Series?” or “what is the dollar-euro exchange rate?” My judgment had been drawn based on the earliest versions of Siri that had significant problems in voice recognition and returned “interesting if bizarre” information in response to questions.

Then recently I watched a teen sit with her iPhone and take notes, schedule, get smart answers, and generally zip through her homework. She did not seem to be doing anything “special” to enable the phone to interpret her voice. And she got terrific and accurate translation of her spoken words into written words using Siri.

Well … I decided it was time to start acting “cool” and flexible again and seem like I was having a conversation with my friend Siri. I started to talk to Siri and “her/him/it” and tell it to take written notes. I experimented with several Apple devices and found that multiple individuals (and devices) linked on the same account can easily share notes.

Free. Nothing special required. Easy. Doing a little research, I concluded that the transcription and note taking function now work far better than ever before due to enhancements in Siri, but more importantly because of recent upgrades in the Notes app included in iOS.

There is huge potential here for Persons with Dementia to take notes for themselves easily and simply by speaking into an iPhone they carry everywhere. And for caregivers and family members to leave notes for a Person with Dementia. Or to check the PWD’s notes to see what is going on. No lost notes and I bet that many people are likely to carry their phone everywhere than to carry a pencil and notepad.

If you and Mom (or Dad or your aging friends) carry iPhones, you can easily set up a system where notes can be shared in a couple of minutes.

Comments:
1. Apple is reliably rumored to be releasing Siri for the Mac in June 2016.
2. At this time I only recommend sharing notes, not calendars. Calendars are confusing.
3. Siri also runs on the Apple Watch. Hopefully well enough to also share notes.
4. Donald Trump is reportedly suing to change the name Siri because he does not want Syrians in the US (OK, so I couldn’t resist).

The mind map below organizes the basic information about this system and provides additional details.

SIRI, NOTES, PERSONS WITH DEMENTIA AND CAREGIVERS

The slide presentation breaks the mind map into pieces. It will run automatically or you can push the pause button and then use the arrow keys to move through the presentation manually.

This slideshow requires JavaScript.

Siri, take a note. Get started making electronic notes with Siri many times per day.

You can change voices for Siri [male/female and in the US Version Americanish, UKish, or Australish] easily. I prefer the female British voice (the American female version is too common, the Australian female version is too upbeat and hard to follow, and I do not want a male butler or a bossy service representative voice). Mary Poppins is quite helpful, friendly, and at times scolds you. I need a nanny.

By the way, ask Siri to take a note and say this word. It will spell it correctly.

If you use Siri, you can also find out the answer to the “argument” (discussion) you having with your caregiver about how much money Lionel Messi makes in dollars, euros, pounds, or yen.

Sorry folks. I do not use PCs anymore after 30 years of frustration and bugs or Android devices so if you do not use Apple products you are going to need to explore this area on your own.

Here are links to some earlier posts about events, people, reactions, and other information you might wish to document as you age so that you (or a caregiver or younger family member) will have the information later. Each of these posts illustrates combining text and images. These examples are ones that can be done by you before you have any cognitive problems as a self history as well as with a caregiver after problems occur. Any whether you ever need to use to help you if there is a cognitive decline, these are great ways of passing down information from generation. I wish I knew much of this information about my parents and other family members. Click on links to see examples.

Beliefs and Values

Diary

Traditional Timeline

Symbolic Timeline

Stories

Letters

Data Visualizations

Career in Perspective

Social Media

Favorites

Some Things to Document as You Age