A Reply to Kate

My friend Kate Swaffer, living "as well as she can with Dementia" in Adelaide, Australia, and being one of the fiercest advocates for Dementia/ Alzheimer's Disease whom I know, in a recent post in her blog, talked about her feelings of having failed to make a difference in her advocacy endeavors. 

Click here to read Kate's post. Opens in a new window.

I shared the following with her about some of the thinking her post caused in me last night as I tried drifting off (without ease) to sleep.

• • • • •

Dearest Kate, responding to: "As I think and write about the value of advocacy, I have come to believe that there are very few people who really benefit from it."

We may not have seen much change in attitude or support of people with Dementia and those who love those with Dementia, but thousands and thousands of people have BENEFITTED from your advocacy! 

Let me share what I will call HALF A DOZEN OF MY (boldfaced and underlined "MY" truths" (as I see them). 

PS After reading your post at bedtime, I spent several hours thinking about what you said, going over this in my mind, and coming up with these 1/2 Dozen Truths.

• • • • •

TRUTH ONE: Most people do not think or care about anything unless it directly affects their life or the life of their loved ones (and often the latter is less true!)

TRUTH TWO: Most people have a difficult if not impossible time dealing with a terminal illness, their own or their loved one. Cancer has a chance of "being beat," Dementia/ Alzheimer's DOES NOT. That makes it even more difficult to face.

TRUTH THREE: When an illness doesn't show itself physically, ie it is internal as in cancer, or a brain tumor, or depression: the outward expression of that disease is often looked at askance and can be called "faked." It can go unnoticed and unrecognized by those with the illness and those who love them. Its truth rejected by those affected and by those who love those affected.

TRUTH FOUR: Societal change moves at such a snail's pace that it is mostly unnoticeable to anyone who cares to watch. It can go on for generations and even then make little progress even though it is smoldering there in the dark. 

TRUTH FIVE: Sometimes an "explosion" of change occurs and suddenly the change we have been seeking seems to occur overnight (but really it has been fulminating over a long period of time.) Sometimes it seems like that change will never happen because there are so many other important changes that need attention and there seems only to be a finite amount of attention available!

Truth Number Six is the BIG one I took away from this post of your "Ineffective Dementia/ Alzheimer's Advocacy". 

TRUTH SIX: PERHAPS THE MOST IMPORTANT PART OF ADVOCACY is to help those living with Dementia, and those loving those living with Dementia: be better able to understand the disease, deal with it, meet it head-on, avoid Prescribed Disengagement®, and live as high a quality of a life for the time left as possible. This is often accomplished on a one to one basis.

Whether you are the "advocator" or the "advocatee" the knowledge, understanding, techniques for dealing with, support in making changes as necessary, and unqualified love one person can have for another perhaps that is the best one can do and the best one can expect to do based on my first five truths!

As Teepa Snow says, "Until there is a cure, there is care!"

CAVEAT to MY TRUTHS: There are so many people living with Dementia/ Alzheimer's Disease who do not have close family, a partner, or friends and they are on their own at home, on the streets, or in a care facility. 

The same is true for the elderly and infirm. This part breaks my heart and needs attention. 

This brings the issue to a much higher, societal, global level in which we all need to take care of each other as fellow human beings and this is such a large issue that for sure the only hope is that each one of us does what we can for each other on a one to one to one basis. 

The stranger you help might be you one day!

Therapy vs Just Do It!

As usual, my friend Kate continues her mission of making sure that the diagnosis of and living with Dementia/ Alzheimer's does NOT have to be a death sentence. In a recent post on her BLOG, she wonders why regular, everyday activities have to be considered "therapy" and if that doesn't over "medicalize" day to day life for those with the diagosis.

Here is her post. It opens in a new window. https://kateswaffer.com/2019/04/05/lets-all-go-into-therapy/

Below are my comments.

• • • • •

Kate,

I seem to always agree with your observations but then feel the need to "point/counterpoint" and to look at the "Gray" vs the "Black and White." I think that this tendency is a mirror to who I am when I look at most things in life! I will agree and give you that it is easier to refute, argue, fine tune, etc an idea or theory than it is to come up with the idea in the first place. So here's to you, my friend, keep up the important discussions.

• • •

I agree with avoiding "Medicalization" in dealing with Dementia/Alzheimer's and that has been one of my platforms in discussing Gregory and my "Alzheimer's: A Love Story." We spent our time on "Redefining Sense of Family, Home, and Relationship" NOT on "medicalizing" the twelve years we lived with Dementia.

In this post, you ask "we might need to stop imposing ‘therapy’ into all people living with dementia." Your comments on "therapy" caused me to wonder about the relationship between "therapy" and your recent discussions on framing Dementia/Alzheimer's as a "disability" in which it should be treated as a right of the person diagnosed with Dementia to have support in compensating for their faltering abilities

Trambling's quote that most do not actually enter therapy and/or drop out by the third session is a different issue and is most likely related to all the other care strategies for PLWA that need attention and "fixing;"  like caregiver training, safe environments, elder abuse, sufficient staffing, etc etc etc.

(People Living With Dementia  = Did I get that acronym correct? P.S. It is easier typing PLWD than it is People Living With Dementia, but I hate reducing people to acronyms ... but that is yet another "front" on with to debate "-)

Perhaps the answer to the statement "Let's all go into therapy!" might be as easy as when an activity is studied in depth and applied to help remediate and or compensate for abilities lost; physical, mental, cognitive, etc; it becomes a therapy. In other words, playing music is for a greater need and seeking a more important outcome than just for the purpose of listening. Perhaps for someone who has lost the ability to play the piano, like my Gregory did, the conscious study of possibilities and use of piano music can provide greater results: listening with headphones to a CD of piano music, going to a piano concert, sitting in front of a piano and "playing" with the keys, and more.
So I googled various types of "therapy." What I found is briefly discussed below. Perhaps those "everyday" activities about which you wonder "the need to be therapized or medicalized when need extra, special, and/or differentiated attention do come under the "medicalization" umbrella.

These are links (opens in a new window) to three sessions I had with Gregory at the piano at his memory care facility: Attempt 1: Encouragement    Attempt 2: He gets a little more involved. Attempt 3: In which he is frustrated.

I am not sure if the experience was a good one for Gregory or not. I wanted, at least, to try it to see if there would be a positive interaction with a "skill of the past" and perhpas worth while to "play" at the piano more often.

In the videos, you can see that he struggled with the experience and eventually became frustrated. But you can also see the "muscle memory" fighting to come back to his once experienced fingers and at the end of the second video, it seems like his fingers were almost "making love" to the piano keys he used to love so much and to the memory of being able to play at close to concert level.

It ended up that we never did "try again" before Gregory died. And while possibly painful for both of us, I am glad we did try at least once!

What is Music Therapy?

Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.

Music Therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals. After assessing the strengths and needs of each client, the qualified music therapist provides the indicated treatment including creating, singing, moving to, and/or listening to music. Through musical involvement in the therapeutic context, clients' abilities are strengthened and transferred to other areas of their lives. Music therapy also provides avenues for communication that can be helpful to those who find it difficult to express themselves in words. Research in music therapy supports its effectiveness in many areas such as: overall physical rehabilitation and facilitating movement, increasing people's motivation to become engaged in their treatment, providing emotional support for clients and their families, and providing an outlet for expression of feelings.

https://www.musictherapy.org/about/musictherapy/

What is art therapy?

Art therapy is a mental health profession in which clients, facilitated by the art therapist, use art media, the creative process, and the resulting artwork to explore their feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore a client’s functioning and his or her sense of personal well-being. Art therapy practice requires knowledge of visual art (drawing, painting, sculpture, and other art forms) and the creative process, as well as of human development, psychological, and counseling theories and techniques.

https://www.arttherapy.org/upload/whatisarttherapy.pdf

What is play therapy?

Play therapy can also be used to treat issues faced by teenagers and adults. By adulthood, most people have lost their ability to playfully explore themselves. Play therapists are trained to help adolescents, adults, and even the elderly relearn the values of play. Playful exploration has been proven to enhance both cognitive and physical behaviors, and there is a significant amount of research from the fields of neurophysiology and molecular biology that supports play therapy as a valid therapeutic technique for those past childhood. A growing number of organizations and experts are dedicated to play research and advocacy, believing that play is important for people of all ages.

Play has been shown to optimize learning, enhance relationships, and improve health and well-being. Adults and children engaged in a therapeutic alliance that focuses on play have an opportunity to choose from a variety of modalities such as movement (body play), sand play, dream play, nature play, social play, pretend (fantasy) play, creative play, storytelling, and vocal play. Play therapy may be used to address a variety of health challenges experienced by adults, especially if incorporated with other treatment modalities. One of the most significant benefits is that play can provide a comfortable and safe environment that may prompt an adult to approach more serious issues.

https://www.goodtherapy.org/learn-about-therapy/types/play-therapy#Play%20Therapy%20for%20Adults

A Video About Truth

In her BLOG, my friend Kate says, "The short Vimeo I am posting below today was made by a friend and colleague in Scotland, which I found to be incredibly profound. For me, it spoke mostly about truth. But it also speaks about lies and deception, and arrogance and the lack of scrutiny. As I have become what others often tell me – a rebel, disruptor, or a whistleblower, or simply someone willing to lose ‘friends’ by talking about topics many others are too afraid to speak up about, this short movie really spoke to my heart."

Kate's BLOG (Opens in a new window)

The Video (Opens in a new window) 

I have copied the e-mail and BLOG dialogues below to show the process of my thinking and how greatly moved I was by the video as well as Kate's and Peter's (video's creator's) responses.

• • •

This was what I shared with Kate via e-mail: 

The video was hard for me to follow but periodically a message delivered rang true. I came away from it, however, feeling hopeless to do anything at all for those I love(d) with Dementia. “Good will can cause as much damage as ill will if it is not enlightened.” But isn’t that true for all things in life? I did the best I could for Gregory but it was not always the best and I was not always at my best. Is it possible that DOING NOTHING would have been better? I am so sad with tears holding open my eyelids.

• • •

Kate responded

I’m so sorry dear Michael… this is witness to how differently we all interpret things. Try not to cry. You did YOUR BEST for your beloved Gregory. In reality, we are ALL DOING OUR BEST, each and every day. Yes, even if it’s not good enough for others. Love you forever my dear friend 

• • •

Next, I sent this to Kate: 

Watched the video again. It feels so heavy with Truth and so dark with Life. I believe that most of the Truth was not uplifting but for one quote, “If organic theory overlooks human freedom, organic practice must suppress it!"

• • •

Kate's Response:

Wow! What a different response! We are such interesting and complex beings. Perhaps because I am quite a close friend of Peter, I understand or receive it differently?

He was a psychiatrist for 25 years and retired last year being too disturbed by his industry (and his Scottish government) and the way they ‘treat’ people with mental illness and dementia.

You’d actually love meeting him; he’s also a poet like us, and such a sweet gentle soul.

• • •

My response:

Thank you Dear Kate. I wish I could make it better for you, for me, for all of us who suffer. And it is not Dementia from which we suffer, it is Life!
Always, Michael

• • •

Peter, the video's creator, responded thusly: 

Dear Mr. Horvich, I am so sorry that this film left you tearful. I have no doubt that you, alongside the medical community did the best for Gregory. I see goodwill and kindness everywhere. This film was about wider, general principles sharing philosophical and artistic thoughts. 

Thank you, Kate, for writing about my film with such beautiful thoughts. You are a wonderful person Kate. My main reason for making this film is my worry that ethics may not always be at the beating heart of science.

aye Peter x, Scotland.

• • •

My comments which followed:

Thanks, Kate and Peter for the continued conversation. The video continues to “haunt” me as I continue trying to understand why it has affected me so deeply.

My further thoughts are that it so accurately portrays the state not only of the medical and psychology professions but also the belief/thought processing of all sentient beings.

For me, it shows reality in a real way, not an imagined one. It shows the difficult work we have, those who “see,” ahead of us to change the paradigms that control so much of our thinking and therefore our lives and our reactions to it.

I believe now that it saddened me in that it uncovered how much I too have been “convinced” inaccurately (inappropriately?) in my thinking. It frightens me in how vulnerable I am feeling right now about how to make changes in my thinking and actions (let alone, as you say, influencing the wider, general principles in medical, philosophical and artistic thoughts.

Finally, Peter, the way in which your video presented the issues and cut into my thinking was as amazingly sharp as a scalpel to the mind.

Continued Growth in Understanding Dementia / Alzheimer's and Supporting Those Who Live With It

My comments to Kate after watching her presentation on Dementia in Singapore. 

CLICK HERE TO SEE THE 60 MINUTE PRESENTATION

(opens in a new window)

Kate,

Just finished watching your Singapore presentation. Magnificent!

Not to ride on your coat tails but in so many ways I feel that we are telling the same story, you from the point of view of one diagnosed with dementia and me from the point of view of loving the person who received the diagnosis. In some ways might I be so bold as to say WE ARE THE YING AND YANG OF DEMENTIA CARE? KINDRED SPIRITS?

In your presentation you talked about so many of the ways that I was able to intuitively support Gregory. 

In some ways I believe that your “attitude” towards the necessary “care giver” better called “care partner” have changed. Also, you have begun to refer to some of the serious changes that occur towards later stage Dementia and allude to how “care” at those later stages can change so dramatically and often times, become necessary even at the risk of loss of autonomy for the person diagnosed.

Since each person is a unique individual; anything we think, say, or propose about supporting those with the diagnosis and those loving those with the diagnosis is almost like a “shot in the dark.”

"A shot in the dark" especially since the day to day expression of the disease can change so dramatically and sometimes so quickly: Sometimes here, sometimes diminished, sometimes returned as of old, sometimes returned but somewhat weaker, eventually gone forever.

Sometimes the interactions are so convoluted that the care partner not only is at a loss to interpret what is going on but also how to interact with and deal with the experience. 

Sometimes the slow "loss" of the person you love so much is life changing and at times disabling to the care giver when no one and nothing can really "help" except maybe faith that things will be better in the morning. 

Sometimes the day to day, minute to minute energy that the care partner must give to supporting and monitoring the person with Dementia is exhausting and affects the carer's health, making the giving even more difficult.

There is NO one right answer and most often people are looking for that ONE “silver bullet, correct” answer. There is the obvious list of how to go about the care partnering (love, respect, understanding, compassion,etc) but no details donot automatically fill in. 

One of my new quotes might be "As in life, as in Dementia … just a little more complicated.” In some ways the Dementia is not the problem, living a good life no matter what shows up is the problem!

The trajectory and progression of Dementia complicates matters more, leaving us feeling so helpless. Since it is a disease that affects the brain; logic, understanding, thinking, processing, cognition, etc --  it complicates things even more -- let alone the effects of the physical, physiological,  and emotional for everyone involved.

The work of changing the world's attitude towards Dementia and how we support those with Dementia is in some ways just beginning and feels almost impossible.

Going from seeing the person and not just the disease, going from care communities to community caring, providing support and techniques to care giving partners, seeing the disease as a diability and providing support to live as well as possible, providing emotional support to all parties affected, educating medical practitioners, etc will get better and will take time ... we just want it now!

Kate, I so look forward to spending some time with you in Chicago. I have so much to learn from you and still have so many questions or maybe just a good hug and sitting together quietly over a glass of wine will be enough! Be well,

Michael

P.S.

Most of what I was able to do for Gregory came directly from my love for him, our respect for each other, the humanity in both of us. People often said I did such an amazing job of being his care partner and my reply is always, “How could I have done any differently? 

For me, what I did is also touched on by the Buddhist principals of The Four Nobel Truths and the Eightfold Path. Spirituality of any type helps us cope. Faith in something helps as well. For Gregory it was not his Catholism and for me not my Judiasm but for both of us Buddhism did provide some peace of mind!

    THE BUDDHA'S FOUR TRUTHS:

• The truth of suffering (Dukkha)
• The truth of the origin of suffering (Samudāya)
• The truth of the cessation of suffering (Nirodha)
• The truth of the path to the cessation of suffering (Magga)

THE BUDDHA'S EIGHTFOLD PATH:

1. The Right View

By right view, Buddha means seeing things in the right perspective. Seeing things as they really are, without any false illusions or pretenses. He wanted his followers to see and to understand the transient nature of worldly ideas and possessions and to understand that they can attain salvation only if they practiced the right karma.

2. The Right Thought

Buddha says that we are what we are because of what we think. What goes on inside our minds (our thought process) determines our course of action. It is, therefore, necessary to follow the path of Right thought or Right Intention. To have the Right Intention or the Right Thought, a person should be aware of his purpose or role in life and is studying the teachings of Buddha.

3. The Right Speech

Buddha asks his followers to speak truth, to avoid slander and malicious gossip and to refrain from abusive language. Harsh words that can cause distress or offend others should also be avoided while also staying clear of mindless idle chatter which lacks any depth.

4. The Right Action

Behaving peacefully and harmoniously; Right action, according to Buddha, lies in adherence to the following guidelines:

- Staying in harmony with fellow human beings
- Behaving peacefully
- Not stealing
- Not killing anyone
- Avoiding overindulgence in sensual pleasure
- Abstaining from sexual misconduct
- Not indulging in fraudulent practices, deceitfulness and robbery

5. The Right Livelihood

By laying down this guideline, Buddha advises his followers to earn their bread and butter righteously, without resorting to illegal and nefarious activities. He does not expect his followers to exploit other human beings or animals or to trade in weapons or intoxicants.

6. The Right Effort

Buddha believed that human nature imposes undue restrictions on the mind at times, causing a person to harbor ill thoughts. So we have to train our mind to think in the right direction if we wish to become better human beings. Once we gain control over our thoughts and replace the unpleasant ones with positive ones, we shall be moving in the right direction.

7. The Right Mindfulness

The Right Mindfulness, together with the Right Concentration, forms the basis of Buddhist meditation. By proposing this, Buddha suggests his followers to focus mentally on their emotions, mental faculties, and capabilities while staying away from worldly desires and other distractions.

It refers to the ability of the mind to see things as they are without being led astray by greed, avarice, anger and ignorance.

8. The Right Concentration

This eighth principle laid down by Buddha is fundamental for proper meditation. Zazen (or, Zen meditation) is the way used in Zen to reach the right concentration or "state of mind". Needless to add, this is the most vital of all the aspects stated in the Noble Eightfold path since, without proper meditation, an individual cannot move on to a higher level of well-being.

Different Realities

My friend Kate recently posted, in her blog, a piece on "realities." It really moved me and gave me some new information about my journey with Gregory and Dementia/ Alzheimer's. Yes even though Gregory will be gone two years come October, I am still processing and learning and sharing my understandings.  https://kateswaffer.com/2017/07/23/sharing-our-own-reality (opens in a new window) So here is my reply to Kate:

Kate,

This particular post really spoke to me (brought tears) and brought back many difficult memories as you (and Paul) so accurately described regarding living in one or the other's reality and needing time to oneself, for the players on both sides of Dementia!

Gregory and I always enjoyed being with each other but also loved our private times and solitude, vacations together and vacations apart, together friends and personal friends, together activities and personal activities, likes and dislikes.

We learned how to be in the same room working alone or in different rooms working together. Dementia/Alzheimer's changed all that, and not for the better. But I must say, that love conquers all so we learned to be flexible (mostly me but Gregory as well) and we changed to accommodate his changes and our needs.

While alone time took new forms, we both were able to secure periods of time to ourselves by enlisting the help of friends and hiring "companions" for Gregory. He got to be "rid" of me for an hour here and there and I was able to get "rid" of him :-) We both benefited!

In addition, not only do the realities (abilities) change in a moment but they can also get weaker slowly, change back to where they started, or become some totally new and strange reality!

This makes for a difficult time in not making assumptions about the person with Dementia's abilities and treating them at all times with respect while at the same time not going too far to allow them great frustration and confusion! 

Also, I am not sure that anyone out there (other than extremely close friends who are truly altruistic and enlightened in themselves and life, having been in a similar situation) could really understand my reality.

I was lucky to have half a dozen people who truly could identify with what I was going through and the others, even though well meaning, proved to be hurtful in their comments and awarenesses and dealings.

A new understanding for me with your post is that I just assumed that Gregory's life reality was the same as mine and what was changing was the reality of his cognitive skills and abilities.  I just assumed both were the same. 

By life reality, I mean that we thought the same, believed the same, experienced the same vs cognitive reality based on what he could do and his failing abilities. I understand now that his cognitive ability reality was changing but failed to realize that the mental, philosophical, belief, assumed, memory etc realities were changing as well.

I could have done a much better job in my caregiver partner role if I had thought of that! Not chastising myself but perhaps sharing that understanding of reality with others so they can be better at what they do.

Meanwhile, friend, I wish I could make it all better for you, and besides my positive thoughts sent your way, I send platitudes like KEEP ON KEEPING ON and HANG IN THERE and KEEP UP THE GOOD WORKS, and I LOVE YOU SO MUCH. So many depend on your words and your wisdom!

The Good and the Bad of Dementia

My friend Kate, whom you have met previously a number of times, recently posted a look at the difficulties of living with Dementia as well as the good parts:
CLICK HERE FOR KATE'S BLOG. (Opens in a new window)

This is my reply to her post:
Thanks, Kate. The metaphors of a "Gravitron" and a "Dementor" are painful but well placed. Richard Taylor's list really causes those of us who are "Non-Dementia-ed" to be more understanding, patient, accepting, supportive, etc and it also makes us more loving if only because of being able to better understand what the "Dementia-ed" are going through.

You say for you "I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow."

I know all of those and experienced them with Gregory, we both felt most of them, and I respect that these are your feelings, but if I may please say ... humiliation and embarrassment should not be allowed on your list! The changes that cause them are not your fault, not in your control, and I would guess that allowing people to see your "padding" helps them to love you all the more!

For example, I know how "humiliated and embarrassed" Gregory could have been at having to pee and shit himself when he could no longer get to the bathroom on time, even with help; but there was no cause because for him to feel bad as it just was, so we cleaned up, and kept on keeping on. Anyone who would have made him feel "less than" would have INSTANTLY been excluded from our life!

Other items in your list can be softened with loving, caring people in your life; like confusion and frustration easy by leaning on a friend to help or on one's "BUB." Loneliness doesn't have to take the front when those you love continue to be there for you no matter what. (Literally FUCK the others!) Sadness, yes ... but also lots of joy and gifts! Anger and irritation can help get difficult emotions under control rather than leading to denial. Accepting the changes and calling them out for what they are, increases acceptance. Who in their "right mind" would not be angry!

Finally, worry! Ah yes, WORRY! The great destroyer of happiness and sleep! The sage advice must be remembered, "Do not worry over those things you cannot change." A waste of time! So true. But I also found that "working at not worrying" was also a waste of time and in effect was a different form of worrying! Between the time we received Gregory's diagnosis and his death, there were so many things we worred about and or "worked at not worrying about" THAT NEVER EVEN CAME CLOSE TO HAPPENING! As we saw the first few worries skipped over, we began to accept most changes more easily.

For me as lead part of the caregiver team, the list of difficulties would probably boil down to one; the feeling of helplessness at making everything OK for Gregory (and for you for that matter, or anyone with Dementia!) When Gregory was happy and content, so was I. When he was overwhelmed emotionally, so was I. As he changed, so did I and this way both of us felt that all was OK. And it was. If I had to tally the difficulties, hard times, sorrow, sadness, and tears from the gifts, the gifts, joy, happines, and laughter would win out!

As I see it, you have met, my dear dear wonderful Kate, your mission multi-fold times with the so many people your life has touched and which your brave words of wisdom read by so many have helped. And your success must it not be tens of thousands and maybe more!

Life is a Sentence

FROM KATE SWAFFER:

Well, my BUB (Back Up Brain) Peter and I are home from Taiwan, Kyoto and Osaka, via Tokyo and Sydney. 

We are both feeling very tired, but also very emotional, as every time we hang out with other people facing dementia, we feel like we are family. I feel a little lost just now, without them. With or without our differences of opinions, we are all facing the same 'life sentence'. We quite like it in the 'cocoon of love and unique understanding' that being with others facing dementia brings.

Those of us diagnosed know we are changing and deteriorating. Those who love and support us, are somehow managing to keep it all together for us. They face stress, physical and emotional health issues, that I have no doubt, they rarely share with us, as they don't want us to worry about them. After all, we are diagnosed with a dementia. But we must think about them, and if we have YOD, we must think about how to better support our children and elderly parents. The stigma for them (I suspect) is actually worse than it is for us. 

Thank you to everyone who supported us so generously and with such incredible hospitably in Japan (and Taiwan). We also will miss you, and your love and friendship. We made many new friends, and connected with many old friends, and wished the flights were not as long, and much less expensive so we could ALL do it more often!

We love you ALL.

MY REPLY:

Wow. Words so beautifully and well chosen! And in general, life is a "sentence" for all of us! Maybe a jail sentence but I would rather look at it like a language sentence! A little harder to read aloud for some or at least different. But the comment shows that we all need to be kind, accepting, and loving of one another. We never know who has how much "difficulty reading their sentence!"