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social, health, political imagery through the lens of George J Huba PhD © 2012-2019

Search results for dementia

I just lived for the past six months in “stay-at-home” conditions because of the COVID pandemic. I also am living with dementia and my residence is a health-care living complex regulated by the State of North Carolina.

As usual, I developed a mind map over the past few weeks to summarize what the issues were (are) in dealing with both of these “problems” at the same time.

Most of the information is best explained by the mind map below because it shows, in a summary fashion, what it meant to deal with the pandemic. Here are some bullets to cover things.

  1. The condominium building I live within has 18 units with either or two occupants. There is a trash pickup a few times per day. The units each have one or two bedrooms and several bathrooms, a small kitchen, a living room, and a very large number of windows in units.
  2. During the last six months, everyone was in a quasi-lockdown condition with residents asked to not leave the large campus with lots of green space and several dozen buildings and about 50 single or duplex homes. No visitors were allowed inside buildings and the social interactions I had were with family members sitting on chairs I would bring downstairs to the grass where we would sit 12-20 feet apart, eat bag lunches together, talk.
  3. Most weeks residents were encouraged to stay in their units and to only go out to get the mail or exercise in a socially distanced way. One meal per day per resident usually served in a communal dining room was delivered to each of the homes. Most of the time residents used grocery delivery services and online stores like Amazon. Most prescriptions were delivered by mail or picked up at a local pharmacy where you could call and pay and they would set your prescriptions outside when you arrived for you to pick up.
  4. The complex of about 400 persons has had no cases of coronavirus among residents and five cases among staff members. A related small residential intensive medical building has had two positive cases of coronavirus.
  5. Within my building, I am the youngest resident (at 69) and most of the other residents are in their late 70s or 80s with all still fairly mobile. I have not talked for more than 5 minutes to other residents in a day. One thing that I have observed is that most of my fellow residents cannot maintain social distancing because of cognitive difficulties or lifestyle issues like their cultural norms, poor hearing, and loneliness.
  6. I have also observed that I am probably the only resident of my building taking advantage of bringing chairs out to the lawn and sitting far apart from 1-2 visitors at a time.
  7. I often (more than half of the time) do not formally see other people in a day; our interactions are limited to my identifying them from the door peephole and conversations through an unopened door.
  8. I love Facetime. My whole family uses it and I log many hours each week on it with family. My goal is to increase my use of it or another video call app with friends.
  9. I have canceled several medical appointments that were not urgent. I am waiting until the virus is under more control before getting cataract surgery in both eyes. I had one online (voice only) appointment with a neurologist I see for cognitive issues. I recently had a video appointment with another neurologist I see for movement symptoms and overall management of neurological issues.
  10. The two online appointments (one each with two different neurologists I consult with every six months that I had worked well The video format was much more effective than the audio-only one I had early in the pandemic before video equipment had been installed in the offices of the Neurology Department.
  11. When I had my appointment with the movement disorders expert, I found that we could accomplish much of what we did in an in-person visit. For instance, I adjusted my video camera a little and then walked up and down the hall for her to observe in the same way she had done for 10 years at her office. I help my hands up to the camera so that she could look at tremors and movement acuity. Surprisingly, I also found the interactions with a doctor I have worked with for years to be as relaxed and thorough as those I experience in person.
  12. As someone who had early-onset dementia and neurodegeneration diagnosed before I was 60, I have watched myself decline in functioning level for a decade. Over that decade, the level of the decline from year to year was fairly constant although getting a little faster as I got older as would be expected. During the pandemic, my rate of cognitive decline as been dramatically greater.

Click the mind map to expand it.

 

Sections of the mind map. Same map as above.

 

The past two months have been a time of great anxiety for everyone. At this writing, 170,000 have died from COVID, 25% of the American workforce is unemployed, and the USA is polarized beyond anything I ever saw at any time in the 69 years of my life.

On top of the great challenges of the past months, I deal with dementia and am alternately fairly calm (in no small part due to great medical care and appropriate medications) and anxious and confused and memory-challenged. 

Over the past 10 years as I dealt with early-onset dementia I have used the idea of comfort activities to help me get through times of great turmoil and confusion.

A comfort activity for me is one that is predictable, one I know will be pleasant, and one I have probably done many times before. So I watch the Hunt for Red October for the 51st time or rewatch all the episodes of the 2000s version of Battlestar Galactica which I have seen at least a dozen times. Recently I have rewatched the four seasons of the Expanse almost a dozen times. been revisiting all the albums of the Rolling Stones and the Allman Brothers, and reading lots of books I have read several times since I initially enjoyed it years ago.

With dementia, I sometimes have to watch a movie a few times (or more) to understand it. And every repetition thereafter I find things I didn’t understand the previous times or forgot. But I always remember that the activity is one I like, one that is calming, and one that will not confuse me.

If you have early stages of dementia or are a caregiver for someone with dementia, try to identify comfort activities and try to do some several times a day. And, if you do not have dementia, I bet this same strategy can help you deal with trying times of confusion and anxiety.

The following mind map explains my view of comfort activities. Click on the image to expand it.

When discussing the COVID-19 pandemic with a loved one who has dementia, it is important to be matter-of-fact and honest but with a respectful, loving, calming, and warm voice, touch, and style.

Don’t make the conversation about the pandemic too detailed. Do discuss the issues in a general way and be honest. Don’t make it too graphic. Try not to trigger anxiety, agitation, and anger.

The TRUTH but gently. How the pandemic will affect the person with dementia and you and your relationship. But do so gently and with concern and with a positive attitude that “we can get through all of this but it will take a lot of hard work by us.”

Click on the mind map to expand its size.

I have written about this topic more than a dozen times since 2012.

I know that adopting visual thinking rules has made it much easier for me to weather the storms of cognitive decline and neurocognitive disease. I know that the same techniques are useful for caregivers and healthcare providers.

Think about making a small investment in time to explore the methods I recommend. Your initial attempts require no more “equipment” than a couple of pens or pencils and the back of a used envelope.

Also, see your pharmacist and ask her concerns about any of the drug combinations you take.

I have always been quite concerned that with a number of different conditions being treated including dementia symptoms and underlying brain disease, it was quite possible that some of the medications might be counter-indicated or redundant (and thus giving me an “overdose” of certain brain pathways. Your physician(s) can help you resolve this.

NOTE. MANY OF THE MEDICATIONS PRESCRIBED FOR DEMENTIA SYMPTOMS AND CAUSES NEED TO BE WITHDRAWN GRADUALLY AND SLOWLY TO AVOID COMPLICATIONS FROM STOPPING THE DRUG QUICKLY. ALWAYS SEE A PHYSICIAN ABOUT DISCONTINUING A MEDICATION OR CHANGING THE DOSAGE.

I believe you can live well with dementia. I believe I live well with dementia.

Here are some of the rules I made for myself to help me stay focused on the goal of living as well as possible 10 years after being diagnosed at age 59. I have been using these guidelines for myself for many years.

I hope they are as helpful to you as they are for me.

Here is a mind map of rules and guidelines I do my best to follow. If you have dementia, trying to use these guidelines for a few days or weeks may help make you more skilled in dealing with your dementia.

Note. The information in this post is not a treatment or medical advice. These are just a few thoughts about living well while having dementia that have been helpful for me.

Click on the image to expand its size.

In retrospect, the most difficult time in dealing with my dementia was the first few (about three or four) years. In the beginning, the symptoms of dementia hit me like a jackhammer and everything in my life became a crisis because I did not have the skills and tools to deal constructively with my new limitations, cognitive reality, and my shrinking universe. With a lot of help from family and friends and caring agencies, I did build up skills that have permitted me to learn how to “control” my new medical reality.

I write a lot about how I dealt with the problems caused by the dementia constellation of symptoms. I live well 10 years after the recognition of my neurodegenerative disorder(s).

Here’s where I was in 2010 before I learned how to approach the control of dementia. My message now is that it is possible to learn skills and tools that can improve the quality of life with dementia.

Click on the image to expand its size.

 

There are lots of assumptions in the healthcare world. Some of the assumptions derived from the individual healthcare providers and/or their professional and accrediting agencies. Other assumptions arise from biases long-held by elected officials who must approve the use of public funds for selected services and deny them for others. Additional assumptions arise from major stakeholders in individual and corporate income and profits. Amo g the stakeholders are the pharmaceutical and healthcare supplies manufacturers (often, by the way, subsidiaries of Big Pharma companies), doctors of different specialties, insurance companies that manage healthcare facilities, and research universities that expect public sources to pay their overhead for operating the entire institution and not just the parts that cover healthcare research and medical treatment.

To develop a better healthcare system for everyone,j and in the area of dementia services where I focus my concerns, various kinds of cost-benefit studies are necessary. For instance, should dementia patients add a new, but generally unproven expensive drug to their treatment plans or instead receive a package of social services including care management, reimbursement of costs for services currently provided for free by their family members, respite services for caregivers, and patient and caregiver education. Should dementia patients get training on how to better make decisions, solve problems, and understand others better rather than some more medications purported to improve (but only slightly and only for some) their cognitive functioning.

For dementia patients, I strongly believe that cost-benefit studies need to be conducted to determine whether more cost-effective improved outcomes can be achieved with cognitive-social interventions, increased use of pharmaceuticals not fully proven to produce effects at this time, or combinations of the two.

It is very unlikely that at least within the foreseeable future there will be enough final resources to provide “perfect” treatment for each patient. Hence, it important to know the best combination of imperfect treatments that can be made available for different types of patients.

The following figure discusses some of the issues. Click on the image to expand its size.

When people look at and try to interact with people living with dementia, they often misunderstand what is being expressed. People with dementia cannot control facial muscles and may appear to be angry or disinterested even when very happy. They may talk slowly and then come out with something brilliant which you will miss if you stop them mid-sentence. They tire easily and may expression or irritation, not because of the behavior of others but just because dementia can make one very “mentally tired” in a way that I never experienced prior to dementia.

I’m there much of the time, I just don’t look the same way I used to. Be patient.

Click on the image to expand the size.

Your inner clock is extremely important. It helps you go to bed and wake up at a time that matches the rest of the world. It signals you when 15 or 60 0r 90 minutes passes. It helps you get to appointments on time or to the grocery store before it closes.

My internal clock has been broken for the past six months. It’s more of a problem than it might seem it should be.

Click on the image to follow the journey through the warped time-space continuum.

 

 

 

 

While having dementia, I realized that I could not always depend on myself to be able to remember what had happened to me over time. Symptoms? Mood? Problems? Successes?

One of the most effective ways to improve medical treatment is for the healthcare provider(s) and the patient to work as a team. Notice that one of the first things your doctor asks is “how are you?”

How you answer that question will greatly determine how much you and healthcare providers can accomplish during the appointment.

When friends ask you how are the automatic response is “fine” for most people. Same thing for when doctors ask that at the beginning of an appointment.

Let’s be real here. When you have dementia, things are not going to be fine ever again. By just replying “fine” your friend or healthcare provider might infer that you are avoiding answering honestly or even worse, they will believe that you are “fine.”.

About a year after my diagnosis 10 years ago, I stopped just answering “fine” and adopted the following response.

“For someone who has dementia, II am doing as well as anyone can realistically expect, and many times even better than that. I am eternally grateful to my doctors, family, and friends.” Or something more informal but expressing the same thoughts

Now, if you want to get the most out of your doctor’s appointment, you need to quickly, fully, and accurately tell your doctor what “fine” or “terrible” means to you..

Doctors are scientists trying to use all of their skills to determine what they can do to make your life better and more comfortable.

They need DATA. Not just data that comes back from a blood test or your blood pressure or weight but data on how your medications are working, how you get through your day with dementia, events that may have happened like a fall, and side effects you get from your medications.

I know how to deal with the need of the doctor for DATA to fine-tune your treatment. You figure out what she needs to know and you start to document what is going on.

So I started to prepare for the appointments by spending a few minutes developing a mind map that would help me remember what to say in my appointment using the mind mapping techniques I talk about in this blog. This helps me capture in more detail how the 3 or 6 months between appointments had been going. And it helped me understand how the things I did and the environments I faced determined the outcomes of my treatment.

II started collecting some data about myself and I brought some mind maps to my doctor appointments regularly. It got much easier for me to explain how I had been doing since my last appointment. How well did my medications work? Did they have side effects? How did I structure my day and how did I get along.

Several doctors saw me consulting a bright and clear mind map on my lap. In several cases, they (my neurologist and my internist) almost grabbed the display from my hands. I now have dozens of mind maps scanned into my medical chart.

The mind map below shows some of the data I collect and how I present it to my doctors.

Expand the image by clicking on it.

I’ll be creating many more blog posts on how to work with your healthcare provider and provide her with data that helps her understand what works well for you. Watch this space.

 

I made the following mind map at the end of the day yesterday to document what I had done that day. The source of information was a small notebook I carry to scribble incomplete thought during another day of living with dementia. This mind map took about 5 minutes for me to draw (I have a lot of practice) with a pen and a medium-sized page from my sketching pad.

Click on the image to expand it.

 

 

To make the ideas on the mind map identify streams of color. You can just take your map and go over it with color pens of various types. Like this …

While you see my computer-assisted mind maps on this blog site, I find the hand-drawn maps adequate for simple applications.

Try to draw a similar small map. Do you think you might remember the organized information better and encourage your mind to create associations or brainstorm new thoughts? That’s how it works for me. Using a few colored pencils makes the hand-drawn map even more useful.

When I want to capture and organize more information I use a computer program (either starting with a hand-drawn first draft) or just creating the map from scratch in a computer program.

Here is a computer-assisted map drawn from the first-draft above. It took me about 15 minutes to draw; I added a little more formatting because the map was going into a blog post rather than being just for my use. I could have drawn the computer-assisted map in 10 minutes if it was just for personal use.

Click on the image to expand it.

 

 

After you experiment for free and with materials you already have in just about every room you have in your house — and possibly already in your pocket — you might want to try to develop some maps in free programs or free demonstrations periods for more expensive programs. Programs are available for notebook computers and mobile devices. There are many apps for Macs and PC and iOs (Apple) and Android mobile devices.

I hope this post gives you a little better understanding of why I mind map with dementia to improve my ability to continue to think well. I have found over 10 years that I have been able to retain quite a bit of my cognitive functioning in spite of neurodegenerative disease.

Will this work for everyone? No. Is it worth a try? Well, it costs nothing to try as you already have that pencil and an old envelope around. And you could always work on a mind map during the television commercials instead of running to the refrigerator.

Give it a try.

Neurodegenerative conditions progressing in typical ways can cause many different type of altered psychological functioning. Psychiatric medicines may help control some of the psychological conditions caused by brain disease or create additional psychological problems as side effects.

You need to discuss psychological problems that you experience every time you see any of your medical care providers.

Psychiatric drugs used for those with neurodegenerative disorders may be prescribed differently than they are for psychiatric patients without neurodegenerative conditions. Hence if you are being prescribed psychiatric medications for a neurological condition, try to see a healthcare provider who has been trained in both neurology and psychiatry.

Click on the image to expand its size.

As soon as you are diagnosed with dementia, it is important to start to use techniques of “living smart with dementia.”

  • Time Frame: reorient yourself to the ways things are now, not what they used to be.
  • Medications: work with your doctor on drugs that can help with your symptoms and follow your doctors’ instructions.
  • Anxiety: ask your doctor for help.
  • Gratitude: Appreciate and acknowledge all those who help you.
  • Communicate: Use appropriate methods for your current cognitive strengths not necessarily the way you have done it in the past.
  • Apathy: Take steps to actively reorient yourself when you just don’t feel like doing anything.
  • Think Small: Your goal is to live well and make as few problems for others as possible. You are not going to rebuild your career or Rome. Identify what you can do and work hard to do.

The mind map below shows a synthesis of these ideas. Click on the image to expand it.

Over the weekend I did something I have not done since I retired from my job because of dementia in 2011.

I flew a round trip on airplanes including two legs in each direction and four hour connection times both outbound and inbound at the Philadelphia airport.

I flew unaccompanied.

It was a lot more difficult than when I travel with family and almost a night-and-day experience in relationship to the 20 years I flew between 100,000 and 150,000 miles each year without leaving the lower 48 states of the USA.

But I did it.

Should you be inclined to do what I did and fly unaccompanied, I have some very important pieces of advice.

  1. You cannot even try flying alone without the support and permission of your family and caregivers. Honor their wishes and judgments.
  2. You should talk to your doctor and take seriously their advice and concerns about flying. If your doctor says you cannot do it, recruit someone to go with you. Or don’t go.
  3. Do not even go on the plane alone without a LOT of preparation. This is critical.
  4. The most important thing you can take if you travel alone is a smartphone packed with lots of travel apps, and web clippings of important information like your air travel documents, key contact lists, an full itinerary, possibly a bank card integrated into your smartphone, and pictures of important information like your ID card, pill warnings, where you are going, who you are going to see, and much more. You cannot ever have too much information on a smartphone. But do make sure you can find it quickly when you need it! Note: I believe that you cannot leave your ID at home. Security checks require a physical ID card.
  5. As a rough estimate, I think that probably less than 5-10% of all people with EARLY STAGE dementia should be traveling unaccompanied. Forget traveling alone if you are in one of the advanced stages of dementia.

Here is a small mind map I made up while sitting in the Philadelphia airport a couple of days ago.

Click the image to increase the size of the mind map.

 

 

The most difficult part of the trip by myself was to get through security screening. Pray for a world where terrorism is no longer a problem.

CLICK HERE to open another window showing all of the posts to date (more than 20 are expected) in this series on The Great Visual Thinking Machine.

The Great Visual Thinking Machine is a set of visual thinking procedures that help one collect new information (especially VISUAL information), remember and recall information, and plan, schedule, and make comparative judgments.

97% of all the topics discussed within 813 posts in this blog (Hubaisms.com) since 2012 have used my evolving vision of The Great Visual Thinking Machine™ or TGVTM™.

I developed this model between 2012 and now (early 2019). During that time I have had dementia.  Think about that. Now, think about that again. None of my blog posts has been written with anyone else, edited by anyone else, or “approved” by anyone else. The key part of the blog posts — the complicated mind maps and other visual material were similarly developed by me with no directions, information, or revisions by others.

Using methods embedded as parts of The Great Visual Thinking Machine” did not keep my brain from continuing to degenerate in the frontal and temporal lobes. This is clearly demonstrated in my most recent MRI and PET scans I reviewed with my primary neurologist last week. I personally NEVER expected that using methods of thinking that were visually-oriented would either heal my brain or slow its overall physical degeneration.

But, I did hope that maybe an enhanced ability to think in an effective and accurate way using would slow the decline of my quality of life. Could I do that? I hoped for such an outcome as a result of learning and using new methods of visual thinking and I think that I achieved it FOR ME. Would this work for you? I don’t know. There have been no gold standard random assignment clinical trials. In fact, while much research needs to be done, this blog illustrates over six years that I was able to retain significant parts of my overall cognitive processing levels.

The Great Visual Thinking Machine includes cognitive and behavioral skill building, not medical, psychological, or other forms of professional treatment or therapy. Collectively the methods are super-charged ways for taking notes and comparing options The methods include encoding and decoding information in visual ways so as improve memory. These techniques can super-charge virtually all aspects of cognitive processing.

One reason I decided to make posts to the blog every few days was that I wanted to document my level of using my brain and new technologies over a period of years. I have done so and you can easily compare the results from 2012 through the present online here.

The diagram below is a depiction of The Great Visual Thinking Machine. It is written in the way that I use visual thinking methods to outline my thoughts and communicate them to others. The program used here is iMindMap, the premier way of making mind maps on computers. It is also the core of the major set of different visual thinking techniques that I use, typically in various combinations.

Click on the image to expand it.

The next mind map shows the potential users of The Great Visual Thinking Machine.

This post is the start of a series that explain how to use components of The Great Visual Thinking Machine. I expect to make a new post in this series every 1-2 days.

#TGVTM #TheGreatVisualThinkingMachine

#MindMap #VisualThinking #MindModel

tgvtm™

I have been writing a lot on this blog about apathy during the past months. It has been an increasing annoyance and in some ways debilitating symptom. Where is the off switch? I’ve been looking for it for a long time. I cannot find a personal way within my control to turn apathy on and off, even though I do cycle through periods of greater and less apathy all week, often during the same day.

Help.

A mind map shown below discusses my dilemma. Click on the image to expand it.

my brain with dementia apathy condition

 

Click here for other posts on apathy.

It’s the elephant in the room.

elephant small

Now that’s a cryptic title for a blog post, isn’t it?

When you move into later stages in dementia, there are some additional challenges to deal with.

  • Apathy (A) like you have never felt apathy before.
  • Anxiety Avoidance (A+A) where the primary experience is often trying to stay away from events, people, and situations that cause you anxiety, to a large part because the experience of anxiety gets harder and harder to cope with.
  • The Bursting Bubble (B+B) phenomenon wherein strategies you have used successfully in earlier stages of dementia to maintain quality of life no longer work so well.
  • Confusion (C) as a daily part of everything you do increases 10-fold.
  • Communication (C) becomes less automatic, more idiosyncratic to you, much harder because words disappear on the way in and on the way out, slower, ambiguous, more frustrating to you and those you are communicating with, and possibly without any memory of things you said 5 minutes, 5 hours, 5 days, or last Thanksgiving.
  • A(A+A)(B+B)CC

Sounds like a recipe for disaster to me unless you take active (and hard) steps to maintain quality of life under different conditions you have encountered before.

The following mind map shows the problems involved with moving into later stages of dementia and some solutions that might work for you. Skills and techniques you learned at early and middle stages of dementia will be helpful but not sufficient to fully deal with the continuing challenges of maintaining quality of life.

Can it be done? Yes. Is it easy without a plan? No. Does a plan help? Yes.

Here are some explanations of what might be happening to you (or an individual under your care) as dementia progresses. Click on the image to expand it.

A few solutions for each problem are also suggested. Note that these are general suggestions and NOT medical or psychological advice. For more help, see your healthcare provider(s).

The A(A+A)(B+B)CCs of Later Stages in Dementia