Have You Ever?

Have you ever wanted to walk out the door of your home with just a few items in a duffle bag, lock the door, and never return ... at least for an indefinite, extended period of time?

We become so used to our lives, our routines, being with the people we care for, petting our dog or cat, owning the things we have. Then something like COVID 19 comes along and all of a sudden everything we know changes, the future is no longer what one hoped for, and the idea of impermanence becomes more of a reality than it ever has been. Maybe that accounts for my current feelings of wanderlust?

As we get older we get more secure in who we are, more comfortable with what we have, and dependent on those possessions; the more difficult it becomes to make big changes. We hold on for "dear life" to what we have for fear that if we let go, we may never be secure or comfortable again. Also, as we get older the feeling of time's running out gets stronger. If you are going to do something, better do it now!

I am grateful that financially I am comfortable and with my retirement pension, help from Gregory's life insurance, and with successful planning in my investments I do not have to worry about how I will pay for my life expenses.

I was thinking that it would be wonderful if I could pack a change or two of clothing, my medications, my cell phone with charger, and perhaps my iPad Pro. I would not have to let anyone know the details or whereabouts of my decision just that I was doing it, so they would not worry. I would have to make sure that my pets were cared for and that my bills would get paid. I would call my loved ones now and then to let them know how I was doing and that they should not worry about me.

With duffle bag in one hand and credit card in the other, I could take on the world. Fly to where I wanted to be, rent a room, eat out, buy whatever I might need when I might need it. For example, instead of having a medicine chest full of all kinds of remedies, if I had a cold I could go to the nearest pharmacy and buy a small box of Mucinex. If I wanted to read the next book, I could download it to my iPhone.

I could spend my days in my room away from home, thinking. Or I could go to a local museum, a library, a botanic garden, or take a hike to see natural wonders like a mountain or a waterfall. My iPhone would document what I saw and my iPad would tell my stories.

Moving on to the next site or adventure would be no problem. Whenever I felt like it, on a moment's notice to no one but myself, I would pack up the duffle bag, leave any surplus behind for whoever moved into the room after me, and after a train ride or an airplane flight, begin my next adventure.

Granted with COVID most of the above would not currently be possible but I can fantasize anyway. Will I be brave enough to embark on an unplanned, directionless adventure after COVID? Not sure. Then again I have also thought about buying or renting a "small house," deciding exactly how much would be enough to live in it and take that as my adventure in basic living.

The hope for these changes in me lies in how pared down my life currently is because of the pandemic. While I have so many luxuries around me, for which I am so grateful, my life certainly has changed in ways I never could have imagined, I continue to fill my days meaningfully, and I am happy and content.

Behavioral and Psychological Symptoms of Dementia or Behavior and Psychological Changes Due to Dementia

I have continued to refine my thoughts, as precipitated by friend and colleague Kate Swaffer, on 1) Caregiving Teams, 2) Use of labels, 3) SYMPTOMS due to Dementia/Alzheimer's vs CHANGES due to the disease, 3) Use of drugs for symptoms and changes, and 4) Attending to and respecting the human rights of people diagnosed with Dementia/Alzheimer's.

It is a very complex conversation and I am sure it will continue.

• • • • •

September 10, 2018 

Kate,

I have given much thought to your recent posts on BPSD (Behavioral and Psychological Symptoms of Dementia) and the abolition of such. I have attempted to share comments several times, did a little on one of your posts, but for the most part was overwhelmed by the implications you present and therefore I went into “hyper-thought” to try to make some sense of the situation (at least for myself!)

While I agree with you strongly, and join you in your fight for “Human Rights” for people diagnosed with Dementia/Alzheimer’s, I also feel that I need to clarify in my mind what it is that WE (or at least I) am/are actually dealing with here.

First issue—Good vs Bad People and Caregiving Partners:

There are Good People and Bad People. There are good intentioned people who make bad choices and ill intentioned people who think they are making good choices. And there are people on the continuum between the extremes. 

How caregivers provide care is also on a continuum of good to bad, informed to uninformed, appropriate to inappropriate, etc. These continuums affect how people diagnosed with Dementia/Alzheimer’s are treated and how the care they receive is given.

There is a difference in care given by family and friends vs paid caregivers. There is a difference in care given when the person diagnosed with Dementia/Alzheimer’s lives at home or lives in a memory care facility. How a person receives care differers greatly when they live alone, have no family or have been ignored by family. 

I know that based on the experience of many relatives, the care given in many memory care facilities, is unconscionable and with little respect for Human Rights and more for the facilities convenience, but that does not condemn all such facilities!

Finally, the nature of those diagnosed with Dementia/ Alzheimer’s and the nature of their family caregivers, will determine the reactions and changes and response to being part of the caregiving team. Caregiving teams which are used to RESPECT will most likely continue to operate with respect. Those teams which were ARGUMENTATIVE, DEMANDING, and or INCONSIDERATE will most likely continue to operate in that way.

Second Issue—Good vs Bad Labels:

While labels can be harmful, I believe that they are also useful and necessary. Some say that we should not have to categorize or label and that the labeling itself is part of the problem. I believe that labeling and categorizing can be part of the problem but it is also part of the way in which the human mind comprehends, deals with, and makes decisions with regard to the every day complexity of life!

I believe that labeling must remain flexible, open, nonjudgemental, and subject to careful, continuing scrutiny and the willingness to change.  STEREOTYPING, NO, but understanding our life through categorizing and labeling is how we all make sense out of complicated issues as well as helping us to make every day decisions.

Third Issue—BPSD A Good Label or Bad Label?: 

Using the term BPSD (Behavioral and Psychological SYMPTOMS of Dementia) does MIS-REPRESENT many of the NORMAL HUMAN REACTIONS that people diagnosed with Dementia/Alzheimer’s experience and present. There are changes in behavior which take place, which most likely reflect the confusion and frustration, memory loss, and especially with the loss of language which comes with the disease. I believe that early in the disease, many behaviors incorrectly considered symptoms really are “human nature.” 

But I also believe that at times Dementia/Alzheimer’s DOES have symptoms, especially as the illness progresses, as cognition and language are compromised, as the brain is not able to function as normal. Examples of SYMPTOMS of Dementia are loss of language, forgetting, verbal repetition, hallucination, confusion of past and present, eye/hand coordination, difficulties walking, etc. Getting frustrated and angry because of the inability to explain ones needs is a HUMAN REACTION, messing ones pants is a DEMENTIA SYMPTOM. 

Perhaps there needs to be two sets of labels to differentiate? BPSD (Behavioral and Psychological Symptoms) and BPCD (Behavioral and Psychological Changes?)

Fourth Issue— Human Rights and Use of Drugs:

Use of drugs to support people diagnosed with Dementia/Alzheimer’s is NOT ALWAYS BAD! Sometimes the use of drugs is necessary. It can be beneficial when used after all other options are exhausted, when used in the person’s best interests, when using the lowest possible dosage, and when being monitored carefully.

The first line of inquiry must be finding out the source of desire, need, confusion, frustration, discomfort, or pain. This is especially difficult and time consuming, but absolutely necessary, especially when the person no longer has use of language. Not excusing it but rather stating the reality of it.

Fifth Issue—Human Rights vs Loss of Rights:

I am not living with the diagnosis of Dementia/Alzheimer’s, and while I can empathize, I know that I can never really know what it must be like to slowly loose my cognitive and language abilities, among others. So I can only look at them through the lens of my own “normality” not the lens of one diagnosed with the disease! I can imagine but will never really know!

Through my lens, when the person diagnosed with Dementia/Alzheimer’s can no longer use language to express their needs/desires, when their cognition no longer functions in what we know and experience as “normal,” when issues of safety and maintaining health are at stake, then decisions must be made on their behalf, always of course with their best interests in mind. This arbitrarily means a loss of rights for the person to decide for themselves. 

Sixth Issue—Time and Place:

Each of the previous issues and how they are dealt with depends on the stage of the disease, the behaviors presented, and the care location (home or memory care facility.) In a perfect world we would know when and where and how to work with each with every behavior presented. We would have time and energy to understand the needs even when the person diagnosed can no longer express themselves. However, this is not a perfect world. We can only WORK TOWARDS PERFECTION when it comes to helping human beings live the best life possible.

Seventh Issue—Human Nature/Existence—The Same Only Different!

Due my need to clarify, through GRAY and not BLACK & WHITE, how I look at life and the trials it brings to us and those we love, everything I have talked about above, has to do with doing one’s best to live a loving, active, productive, compassionate, respectful (among other descriptors) life.

When any catastrophic illness or experience strikes, whether Dementia/Alzheimer’s, Cancer, suicide, accidental or sudden death, etc; the true colors of the people involved in the caregiving team and in the drama of life raise to the top. Depending on how the team entered the experience, they most likely will exhibit the same ways of dealing with the situation. Sometimes they are able to raise above their usual. Hopefully, everyone will come through the experience (or at times ending up on the other side of life) in a way that respects and supports all players as deserving human beings.

Maybe the solution, based on the thinking that has helped me put this essay together, is to say: 

"Labeling and medicalizing behavioral and psychological symptoms due to dementia, can be harmful and wrong. Many are not really SYMPTOMS but rather HUMAN BEHAVIORAL RESPONSES which are complicated and at times exaggerated due to the nature of Dementia/Alzheimer’s as it progresses.

Perhaps two labels would suffice: 1) BPSD (Behavioral and Psychological SYMPTOMS of Dementia) and 2) BPCD (Behavioral and Psychological CHANGES with Dementia.) 

Also, we must strive to make sure that if solutions are not obvious and at times not available, if the presenting difficulties are not amenable to usual solutions, then: 1) utmost care must be taken to keep the individual’s human rights in mind when making decisions that affect those rights, 2) such decisions must be in the person’s best interests and not those of other individuals or institutions, 3) such decisions must be loving, respectful, and compassionate and reflect best practices and 4) be the least invasive possible.

We should work on looking for better solutions, provide more support to caregivers and staff, increase staffing so time is available to listen and to look for solutions, and provide more time to training caregivers and staff. 

Know that we can only do the best we can do in caring for people who are at advanced stages of Dementia/ Alzheimer’s and we must always be mindful that no matter what stage, they are human beings who deserve the best care possible!!! We must remember to treat them as we would want to be treated!

Personalizing The Condo

In the process of continuing too make the condo my own. When Gregory first went to Lieberman I made a number of changes that would make the condo more personal to my needs. I also did a fresh paint job, including playing with color in a home that used to be all off-white!

http://mhorvich.blogspot.com/2014/05/condo-colors-revealed.html (Opens in a new window.)

Recently I added a reading corner to the bedroom where my computer desk used to be and took over the living room library table, which used to be Gregory's, for my office.

Here are some photos:

New bookcase, chair, & lamp (With Gigi leaving the room.)

Rearranged bookcases (With Emma playing hide and seek.)

New office/library table in living room is now my office.

Wow, This Feels Good!

Since this is my writer's BLOG, I can brag here about myself. Right? Right!

This week as I continue my personal growth trajectory I had a good session with my therapist, did more than I was able to do last week and learned new techniques and understandings in my Yoga class, did more than I was able to do with my personal trainer downstairs at LA Fitness. I made good decisions regarding what kinds of foods I put into my mouth. I did some Swedish Fish and some pretzels but very few, hardly any.

My Sit With Me A While book of poetry has been reformatted into the 6x9 size which is the same size in which the second volume Sit With Me A While Longer was formatted. This change from the smaller size book, which I actually prefer, was to make both eligible for sale on Barnes and Nobel's website as well as Amazon.Com and Lulu.Com. While it is still a self published book it is beginning to feel more and more like the real thing.

I am looking forward to my poetry reading which will take place at Sherman Plaza, my condo, for residents and owners as part of a Social Committee event. I provide the cookies, bite-sized cupcakes, coffee, and tea and they provide the space (no charge,) the audience, and the advertisement. Wish me well.

The condo painting is 75% complete. Brenda will be back on Tuesday (after the Memorial Day Holiday) to finish up. I repeated most of the space in the Antique White which it was originally but now all the skuffs, scratches, and bumps are gone.

I decided I wanted to experiment with color and to do it by highlighting with color the architectural geometry that exists in the condo. For example there is a wall in the main room that provides a pass through to the kitchen area on one side and the kitchen island counter is attached to the other side. This free standing wall is rectangular in shape. I chose to paint it in an intense Celedon Green.

The front entrance hall features many black framed, black and white photographs as does the main room wall (which does not go all the way to the ceiling.) I decided to paint the hall and wall and the wrapped around main room wall in an intense gray which would make the photographs "pop." The hall is a little lighter because there is no day light in that area but when you look at those walls, the gray evens out and that corner of the condo is a "Gray Cube." More geometry.

The master bathroom and guest bathroom will have the same treatment using an, again intense, color called Dragon Blood Red. In the guest bathroom the corner rectangle which is the linen closet and in the master bath the tub alcove and the medicine cabinet area will be painted red.

The red will also be carried into the guest room/den covering the "box" that is the outside of the large closet that you enter from the front hall. It is also on a wall that does not go to the ceiling.

When I walked in after the second day of painting (the Antique White went up the first day) I walked around saying over and over again, "Holy Shit!" "Holy Fuck!" The painters were worried that I was unhappy and asked what was the matter. I told them, "No GOOD Holy Shit and GOOD Holy Fuck! I did not imagine that the colors and areas colored would make such a large impact on the space ... and all for the good."

I do have to admit that the Dragon Blood Red is causing me a little doubt but I think that after I have lived with it for a while I (and it) will calm down.

Hopefully my writing abilities has helped you picture these changes yourself. But just in case, I will post photos when the painting is complete.