Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

Thursday, October 21, 2021

Remembering His Black Grand Piano

Gregory took his mom and his niece to Safir's Piano in Wilmette, Illinois. They were going to help him choose his new piano. He asked Gizelle, owner with her husband of Safir's, about pricing. Her reply was, "Don't ask about price. Play as many pianos as you want until you find the one that speaks to you. Then we will talk about price!"

He proceeded to audition several dozen pianos with his mother and niece jury chiming in. Bits of Bach and Chopin echoed through the otherwise empty two-floor showrooms of pianos of every size, every finish, and every maker." I hadn't realized that the sound pianos make could be as varied as there are human voice differences. Gregory called it "feeling the action of the piano."

Eventually, he found one that said, "Gregory, I love you!" Helen and Renee agreed. And they approached Gizelle. Because Gregory had sold so many of her pianos to his Interior Design customers, she made him an offer he could not refuse. She gave him the piano for her cost, and not only cost but what she paid for it five years earlier when she obtained it! 

The piano was a handbuilt, Kawai parlor grand piano, some five to six feet in length with a matte black finish. Gregory always made it his business to dust the piano carefully and to not leave any fingerprints on the lid. Also, unlike many a movie you may have seen, nothing was ever on top of the piano like a line of photographs of family or important people in one's life! "It just shouldn't be done," Gregory would say.

Twelve years later, when Gregory could no longer play the piano due to his Alzheimer's/ Dementia, he decided to sell it. He said, "If I can't play it as well as I used to, I would rather someone have it who can. I can always listen to my Chopin on my CDs." 

We advertised and found a young pianist, a composer who was looking for a piano having just moved to Chicago from Los Angeles. He came to the house several times to audition the piano and he too heard it say, "I love you!" His name was Michael, fitting! Gregory sold it to him for the same price he paid many years earlier. The piano came and left with love and then more love.

Last night as I was listening to some "meditative music" at bedtime, a piano piece came on. It took me back to my days of lying on our couch listening to Gregory practicing his various piano pieces, making "clams" as he called incorrectly struck notes, until the piece became a perfect part of his memory, played perfectly!

Tears began to fill my eyes and the sobs were just around the corner. Grief never leaves. One just becomes stronger and better able to carry the load. Great love means great grief and who would have it any other way? I wondered, "Where did his piano talent go? What is the piano's life like these days?" 

Gigi (the cat who Gregory had picked out) came to me, as she always does in my sad moments, and snuggled in under my arm and purred. It was her way of "petting me! I settled down and eventually fell soundly asleep. Emotions, tears, and sorrow but carried on the joy of love.

Wednesday, November 25, 2020

My BLOG Still Reaches Out

I am impressed that my BLOG, "michael a horvich cares," dealing with my experiences traveling on the Dementia/Alzheimer's path with Gregory, still serves a purpose as an archive of information to others.

As I said in my closing post, while I will continue to be supportive of others on the Dementia Path, my life must take a new direction if I am to adapt to lessons learned from Gregory's experience, from his passing, and from my continuing to be alive day to day.

This came across my e-mail today and is what prompted this post:

Buenos días, me llamo Susana Munier. He encontrado su blogspot y me preguntaba si era posible colaborar con usted aportando por supuesto contenido de valor. Soy psicóloga, trabajo en una clínica en Sevilla y estoy especializada en el manejo de las emociones y el estrés tanto en el adulto como en el niño. 

La idea de colaboración que había pensado es redactar un artículo que ayude a sus lectores y sea interesante para ellos sobre estos temas, donde pueda aportar esa parte de conocimiento que tengo, con un enlace a mi clínica (si le parece bien) y así conseguir un poco más de repercusión en internet.

De todos modos me puedo adaptar a sus necesidades y tratar otro tema diferente sobre el autocrecimiento y que conozca bien. Gracias por la atención!😊.

This is the translation:

Good morning, my name is Susana Munier. I found your Blogspot and I was wondering if it was possible to collaborate with you by providing valuable content of course. I am a psychologist, I work in a clinic in Seville and I specialize in managing emotions and stress in both adults and children.

The idea of collaboration that I had thought of is to write an article that helps your readers and is interesting for them on these topics, where I can contribute that part of the knowledge that I have, with a link to my clinic (if it suits you) and thus achieve a little more impact on the internet.

Any way I can adapt to your needs and try a different topic on self-growth that you know well. Thanks for your attention! 😊.

This was my reply using the skills I still remember from taking "Spanish Business Letter Writing" in college which uses many courtesies which English letter writing does not.

Querida Señora Munier,

Muchimas gracias para su e-carta sobre mi blog. El blog ya no existe dia por dia. Solamente asiste otros como archivo de informacion. Gregory, mi esposo, se muerio hace cinco años y mi vida ha muvado en otras directiones. 
Con mucho affectiones,
Miguel

This is the translation:

Dear Mrs. Munier,

Thank you very much for your e-letter on my blog. The blog no longer exists day by day. Only others attend as an information file. Gregory, my husband, died five years ago and my life has moved in other directions.

With much affection,

Miguel

 



Thursday, September 24, 2020

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!

Wednesday, June 24, 2020

Teepa Snow's Positive Care for Alzheimer's


I was honored to be part of:
Teepa Snow's PAC (Patient Alzheimer's Care) LIVE@FIVE 
Talking about my poetry and reading a few pieces.




Friday, December 13, 2019

The Outreach Continues

This came across my Facebook Messages a short while back. I continue to be grateful when hearing how people reacted to and benefited from the documentary ALZHEIMER'S: A Love Story. And it in some ways continue to amaze me that it has had such an impact on so many!

I just watched the Alzheimer’s story on HereTV, and want to applaud you. Your dedication was tremendous and a true love story. My partner, also named Gregory passed away last November from a rare disease called AL Amyloidosis. The last year of his life was a special time for me as it brought me closer to him and allowed me to appreciate our 17 years more thoroughly. The last 41 days were spent at Barnes Hospital in St. Louis, and I stayed with him daily there with hopes of recovery. Watching him die was precious in a way as it was something only I could experience. Watching the show tonight brought many tears, and I felt I could relate in an odd way. I applaud your strength and dedication to Gregory. We both have been blest. I hope your life is at a happier place.

Friday, October 4, 2019

As we arrive at the fourth anniversary of Gregory's death, after living 12 years with Dementia which was most likely Alzheimer's, I celebrate by posting two items. One from Pat and one from Jan, both best friends to Gregory and me.

First, Pat articulately and eloquently sums up how I lived through walking the Alzheimer's Path with Gregory. One doesn't "do good" to be patted on the back but it does feel good to be acknowledged. I miss you, Gregory. Together we did a good job. Thank you, Pat.




Dear Michael,

It's about time I tell you what I think of you. I've been saying it to other people, and it's past time to say it to your face.

This is not about your sense of humor, your collections, or your creativity. It's about your conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.

What I want to talk about is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. The management of your own frustration and disappointment.

When Gregory became confused about dressing, you labeled, and then later laid out his clothes. When he couldn't figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, in raw comparison to parents celebrating a child's milestones.

When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn't work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are his touchstone. YOU are the one he looks to for comfort, stability, and anchor.

You've always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, "I have the time. I don't need to go anywhere and I can take Gregory with me if I need to run an errand." You were saying, why not care for Greg at home indefinitely. I don't think I could ever be that generous.

But one day, that wasn't enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparation, you did not panic. You found him a place to be where he is comfortable. Now he is calm and happy again. Nothing about you changed. Gregory changed.

Through all of this, you cared for your extended family and friends too, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgment, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.

I am honored that you include me in your circle and I don't know what I do to deserve it. I do know I need to reflect on how I can be more like you.

I've told my children, a good friend should be someone who makes you want to be a better person.
I can only aspire to be in a relationship like the one you had with Gregory. Because of your example, I am trying to be more patient with my family. I am trying to make more time, take more time to think about how I can help them. I am trying. Your influence improves my world.

You may not be a saint—but you may be a minor angel.

Your friend,

Pat


• • • • •

Next, one of Gregory and my most long time friends Jan wrote this searching, moving post about Gregory's passing. It is a must read about the sacred space Gregory created in his dying and the lessons and love he gave us in his last days and hours. Thank you Jan.


Gregory, a very dear old friend, died today (October 4, 2015) just a few minutes after noon. Diagnosed 12 years ago with early onset Alzheimers, this centered, gifted, and creative man has slowly lost the smooth and easy functioning of his graceful body, mind, and language, all the while sustaining his calm and gentle and awesome spirit.
I received a call Thursday from Michael, his partner of 40 years, that Gregory was ill and then on Friday learned that he was literally dying. Michael and Gregory decided years ago that if Gregory were to get seriously ill, there would be a DNR (Do not Resuscitate)—no IV, no antibiotics.
At school on Friday, just after I learned of Gregory’s status, I was obviously very distracted. I had one more class to go and I was impatient with the students. It seemed as if they were asking too many questions and needed a lot more coaxing and pushing than my reserves were able to sustain.
I rushed from school, picked up my husband, and went to see Gregory at the nursing facility he has been at for the last two years. He was quiet, some rasping, oxygen tube in his nose. Hospice had made him as comfortable as possible. He was sleeping. We all slowed down. Rubbing his arms, talking to him, feeling sad, we sat with him and said our tearful goodbyes.
Saturday he had a breathing cup over his nose and mouth to give some moisture to his throat, which was dry and causing him to cough. A little morphine under his tongue also relieved the coughing. After a half an hour it was taken off.
We had another opportunity to visit, another opportunity to say goodbye. It struck me that in contract to the model of living Gregory had been all his life, he was now demonstrating the same with his death— slowly deliberate, patiently intent, exquisitely graceful, and calm.
Today we arrived only moments after he had died. His body was still warm. Three days earlier, when the hospice nurse infomred Michael that Gregory was preparing himself to die, she didn't think he would last the night. 
I realized that over these past few days, Gregory slowed his death and had made sacred space for us all to dip into. Gregory pulled us in, informed us, and held us close. His slow dying allowed many of us to find the time to come and say their goodbyes.
It allowed us to learn to not be afraid. It allowed us to open ourselves to the impermanence of the universe. To touch someone you love, as they are moving from one realm to the next, is excruciating yet beautiful, full of sorrow yet full of awe, nearly unbearable yet wholly bearable. A sacred space, indeed. Such a graceful and hallowed departing.
Over the years my friend Gregory has given me many gifts, but his death may be the most profound—patiently unwinding, organically reorganizing, slowly deliberate, he has transitioned to the next place/non-place. Gregory, I am forever grateful.
Jan



Thursday, August 22, 2019

Artist With Alzheimer's Drew Self Portraits For Five Years Until He Could Barely Remember His Own Face

DISCLAIMER:
Difficult to see the progress of the artist's Alzheimer's
reflected in his artistic abilities.

Thanks to http://boredpanda.com for this.
I saw it a while ago and was quite moved by it.
Wanted to share with you.
After reading intro, scroll down through eight portraits.











Friday, August 2, 2019

Every Now and Then

Every now and then a correspondence like this shows up and makes it all just a little more worthwhile.

Willian Lansten has left a new comment on your post "Breathing Room":

Hello Michael, my name is Willian, and I'm from Brazil. Recently I found out about your documentary at Amazon and I've been reading your blog about our hero Gregory for months, I think I've already finished all of the posts, and I feel so close to both of u! What a love story, what a great blessed life you've had.

I'm an actor, and I'm graduating from college in Performing Arts, for the last two years me and a group of friends have been studying the Alzheimer's disease and how it affects people, their daily life, their loved ones and their expectations We have a play that we call "A poetry about forgetting", and it's all about hope, positivity, relationships, dealing, and the progress and process of letting it go. And man, you've been such an inspiration to me, I read a lot of your writtings, and it helped me and my group in the process of text creation and choreography. We visited a number of nursing homes, hospitals, medical professionals, read a lot of books and watch a bunch of movies, but I personally, as a romantic gay man, felt a huge connection with Gregory. So much that in homage that's the name of my character.

By that, I just wanted to say thank you! You have no idea of how much you've changed my life, the way I see my life, my vision at performing arts, and my relationship goals. Everyone deserves a Michael Horvich and a love story like yours! There's no day but today.

I wish you the best, be happy! 

Wednesday, July 3, 2019

The Importance of Art in Dementia Care

This presentation was made by Michael on June 30, 2019, at the Evanston Art Center in Evanston, Illinois to an audience of +/- 50 people. There is a slide show taken during the presentation. Photos by Jake Bloom and Jan Yourist.
The Importance of Art in Dementia Care 

Dementia, one cause of which is Alzheimer’s Disease, is not just a memory problem, like many think. It includes cognitive issues as well as physical, mental, physiological, psychological, social, emotional, and medical … and is complicated by the many ways in which it expresses itself, usually different for each person affected!  

As the disease progresses, a person’s abilities, behavior, and needs change. As a person with Dementia’s abilities diminishes, it becomes more difficult for them to lead active, productive, meaningful lives. It becomes more difficult for them to engage with people and with their environment. The hours and days are very long and lonely when there is little they can do to fill their time. This can cause unrest, nervousness, boredom, and depression.

Those living with Dementia, like most everyone; need to continue to be active, productive, and involved with life. THE ARTS can help provide for these needs. It is especially important for people diagnosed with Dementia/Alzheimer’s who have been artistic all their life. 

ARTS, in general, refers to the theory, and physical creativity found in human societies and cultures.   Major types of the arts include literature (including drama, poetry, and prose), performing arts  (among them dance, music, and theater,)  and visual arts (including drawing, painting, filmmaking, architecture, ceramics, sculpting, and photography.)

Today I am focusing on Visual Art, however, all of the arts can help to improve the life of a person with Dementia. As their ability levels change; successful art projects, independently or with support from others, can still take place. These activities can range in complexity from painting a “masterpiece,” to “simple coloring,” to helping create decorations for a holiday party.

The following is GREGORY’S  ARTIST STATEMENT as written by Michael due to Gregory's failing use of language but taken from stories he told Michael over the years.  

QUOTE

“I guess that I have been artistically creative all my life. I was born on July 4, 1948, How creative is that?  

“As a very young boy, sitting at my Grandfather’s feet while he rocked and smoked his pipe, I built cities using Grandpa’s boyhood Anchor Stone Blocks. I attribute my career in architecture to my grandpa and those blocks! 

“As a young boy, I made rings and bracelets using Indian Seed Beads on a loom,  while sitting on a pier post, way out in the water of Lake Michigan, with my family just in out of sight working on their sailboat.  

“When I was eleven I designed and built a complete paper mâché Nativity with the usual cast of characters. 

“In my pre- and teen years, as well as an adult, I sketched a lot. I designed on paper, complexly authentic period buildings … which my mother said was idle-play because “no one build’s houses like that anymore. 

“She was proven wrong when, as an adult architect, for a client, I designed and built a five million dollar authentic reproduction turn of the century French Chateaux in Denver.

“As an architect and interior designer I used my art skills in many presentations to clients. 

“In 2010, when I met Nancy Rosen, whose mother Eileen lives in our condo building, there was an instant connection. Nancy, an amazingly prolific and talented oil painter took me under her wings and I began to develop my latest art form, working with oil sticks. 

“The paintings are on Stonehenge Paper that has been roughly gessoed. I begin each piece by studying the rough surface of the paper in silent contemplation until it “speaks” to me. Then I begin to paint and do not stop, nor look at the work from afar until I am finished with the piece. I automatically know when to begin and when to end a piece.  

“My work is abstract and shows broad, usually colorful strokes while at the same time I pay attention to detail. The ideas just seem to come from with-in, I know not where exactly.”  

“If you think you see a forest, or a landscape, or an animal … that is in your imagination, it is not necessarily what I painted.

“With Nancy Rosen, as artist/teacher/mentor/and friend, in a little over two years, I created close to 100 works of art. I am grateful to her!

END OF QUOTE

Gregory’s work was included in a two-person show at the Yourist/Bloom “Open Table Gallery in Evanston, part of a one-person show in Lincolnwood  which also featured encaustics by Nancy Rosen based on Gregory’s color palates,  and in a one-person show at the Lieberman Memory Care Center in Skokie where he lived for the last 18 months of his life. 

At each show, many of his works sold, whether because of their artistic value or because the people in his life wanted a piece by which to remember him. Either way, it made him feel good to sell a piece and to share his art.

It is said of Alzheimer's that new learning connections become difficult to make,  but Gregory succeeded in making new connections with his new oil stick art while the old connections failed.

It might be said that Gregory was an “Outsider Artist” without formal artistic training, at least no training or experience in painting with oils. 

But I have to believe that his past connections with art helped, including his education and experience in architecture and interior design; his creative nature, eye for color, and awareness of scale; as well as his maestro-level abilities in classical music on the piano.  

His work, for the most part, is abstract so it seems to come more from the pure intent of his heart rather than from his intellect or mind. He never sat down with the intention of painting something in particular. It just flowed onto the paper. 

As Nancy Rosen has said, "Art works well here because LANGUAGE is not necessary." This was so important to Gregory.

Gregory often told Nancy that she gave him a “Whole New Life.” He always looked forward to what he called his “play-day” at Nancy’s studios. 

We often referred to her as “Gregory’s Art Angel.” 

In MUSIC, they say that the baton is like an extension of the director’s body. It flows the music from the director’s mind into her arm into the air around, to be picked up by the orchestra musicians.  

For Gregory, the oil stick became an extension of the painter’s arm. There was no need for the manipulation of tubes of oils, brushes, or palates. There was no need to mix colors. There was no need to clean up supplies. This made it easier for him.

Using oil sticks, colors are applied directly to paper, can be over-colored, or smoothed, blended, and diluted with terpenoid.  

If a stick dries, one can just cut off the end. If the stick becomes soiled with other colors, one can just wipe it off with the terpenoid.

 Nancy would demonstrate and Gregory would imitate. In this way, new learning was easier for him. 

Nancy would make a suggestion on how he could proceed and Gregory would follow through … or ignore her. Nancy was always good-natured with him, an excellent teacher.

A number of themes, of which Michael did the labeling, did seem to develop: landscapes,  diagonals, arches,   
stripes, circles, tunnels with white light at the end, feathers, and more.

When selecting color palates, with Nancy’s help, for that day’s work, he would have color preferences which he favored for weeks, then suddenly change saying,  “Yuck, I can’t do green anymore!”

Gregory was proud of his new abilities, his new hobby, his new art. Once when we were going to a friend’s birthday party he asked if he could take along some of his paintings to show people. I encouraged him saying, “You don’t want to take the attention away from the birthday boy, do you?” He understood.

Whenever people would visit us at home, he would take them by the hand to show them his new work which was hanging all over the condo, especially in the guest bathroom in which his paintings hung wall to wall, ceiling to floor and even in the rarely used shower stall! 

In addition to the oil sticks, he tried to work on collages but found cutting and collecting and keeping track of pieces overwhelming. One afternoon while sorting images to use for a drawing he had a panic attack. I was able to talk him down but that was the end of his collage work. 

At home, we tried and succeeded in working with Sumi ink. He studied calligraphy by trying to copy pictures from a book we purchased.

 He worked with colored pencils and Mandala designs. In the beginning, he did not like them and compared them to children coloring books. I suggested he be creative and alter the patterns by coloring outside the lines. This got him excited.

All of Gregory’s attempts at art fit very well within the confines of his progressing Dementia. Towards the end, at the risk of insulting his intelligence, we even tried colorful finger painting, which he didn’t seem to mind trying.  However, that did not work well since by that time his eye and hand coordination no longer existed.

He loved looking through books with art from the masters, studying them in detail for hours at a time. He continued to enjoy looking at his artwork which filled his room at Lieberman and we would often talk about the good times at Nancy’s studio. 

ART gave Gregory a sense of purpose and accomplishment and pride during a time when so many of his other abilities were disappearing.


I will be forever grateful to ART for the joy it brought Gregory during his lifetime and to helping him actively fill his time. I am forever grateful to Nancy for so gently being his friend, teacher, and mentor during the last five years of his life.  


TAKEN DURING PRESENTATION


Friday, June 21, 2019

Advice to a Dementia/Alzheimer's Carevier Newbie

My latest freelance article featured in Teepa Snow's
"Positive Approach to Care" free online journal.



Advice to a Dementia/AlzheimerCaregiver Newbie
by Michael A. Horvich: Author, Educator, Care Partner

I am often asked, "What would you tell someone who just found out that their spouse or parent or sibling or friend was diagnosed with Dementia/Alzheimer's?" This is what I learned over the forty-one years my life partner Gregory and I were together in a committed relationship and over the twelve years that I walked the Dementia/Alzheimer’s Path with him.

I will not go into the different kinds of thinking necessary for different kinds of advice to give in different kinds of relationships, but rather tailor my comments to anyone being part of the caregiving team. I will also say, that just as there is not one way in which Dementia expresses itself, there is not one way in which to offer care!

Be gentle with yourself. Forgive yourself. To be a successful caregiver partner, you must know that you will not always be successful. First, you are the one who can, must, and will change and adapt; they cannot. Sometimes you will fall short of being your best possible self! Every morning (or as often as you need to) in front of a mirror, repeat toyourself, “I am not perfect but at least I try!” Or the often-touted mantra, “Each day ineach way, I am getting better and better!” If you don’t want to face the mirror, write itdown in a place you can see it at the start of each day.

Try, try again. Next, you are the one who must be “above it all,” knowing it is all aboutthe disease and the person you love; but sometimes you will let frustration, anger, fear, exhaustion, etc. get the best of you. Remind yourself that you are only human.

Know that each day will be a new one. Each day you will get a new chance to “make it right.” Try not to feel guilty or carry yesterday’s difficulties into today. Chances are your loved one will more easily be able to be forgiving and to start each day anew. Take advantage of beginning fresh each day.

Interpreting behavior can be difficult. Know that sometimes you will not know how to interpret the behavior you are witnessing let alone how to deal with it or support the person you love. Try to put yourself in their place and think about how you would feel. Ask them for clarification or at least let them know you care and wish you could help.

Respect the person. No matter what changes they go through, find a way to help them continue to keep their personhood even as their abilities fail. Help them to find alternative abilities to replace those slowly leaving.

Respect the decisions of the person diagnosed. As much as possible, respect their right to be who they are, to make decisions for themselves, or at least to participate in making those decisions, to live their lives in the ways they choose.

Be aware that decisions are not always able to be made by the person living with Dementia/Alzheimer’s. Sometimes and/or eventually, these decisions must be made on their behalf but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.

Validate and Seek. If your spouse expresses worries about financial matters, repeat theirwords to validate their concerns, and then tell them what your plan is. “Oh, so you’re worried about finances? I am pretty sure we are okay, but I’ll check in with ouraccountant to make sure.” If your mom is upset, but she is unable to use language toexplain what is upsetting her, validate her frustration. “Mom, I can see that this is hard for you, and I’m sorry.” This can also be where you need to put on your detective hat and get curious about what is upsetting her. Using visual cues and “Is it this or something else” questions, you may be able to figure out what her unmet need is.

Try to maintain a team approach. In your relationship with the PLWA, make sure to include them in most decisions which affect them. If their ability to participate in the decision-making process is diminished or does not exist, offer the alternatives in bite size pieces which continue to respect that they are or once were part of the team! If you are purchasing a new item, show them two similar items and ask which they prefer.Load the questions a little by offering, “I really like this one best, what do you think?”

Be patient with the person. Their processing and understanding of the day-to-day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made. Abilities may come and go, may return in reduced form, and eventually no longer exist. When asking a question, give the person a chance to process what you said. Asking another question or clarifying too quickly only serves to create more confusion.

Control your anger, as best as you can. Sometimes your frustration can cause anger.Sometimes the PLWA’s behavior can cause anger. Conversations gone awry can cause anger, especially when you have been used to successful conversations for such a long time. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned. Count to ten, leave the room (don’t just walk out, say “I’ll be right back.,”and breathing deeply all can help.

Remember, they are NOT children. What complicates the matter is that mentally, it appears they are becoming a child again, but the fact is, they are NOT children. They are adults, in an adult's body, with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them.

Accept repetition in conversations just as you would gently do for a very young child as he grows with wonder at the world around him, often with his asking the same question repeatedly with a string of Why? Why? Whys? How you deal with your loved one should be similarly loving but with respect for the adult which they are even though they may slowly be losing their abilities and possibly their ability to wonder.

Realize it is the disease, not the person who you are continuing to love and trying to help. If they get angry with you, it is the illness. If they strike out, it is the illness. If they need you to repeat something for the hundredth time, it is the illness, not the person!

Try to see beyond the behavior. Perhaps the person no longer can express themselves using language, perhaps they are no longer aware of what is troubling them. Maybe they are in pain but do not recognize it, let alone have the ability to let you know about the discomfort. At times thirst and hunger are no longer recognized let alone how to satisfy those basic needs.

Things are not always what they seem. At times a dark, reflective window can be a vast empty frightening place that is home to demons and a dark area rug in front of a door can be a deep hole in which to fall! If the memory fails, a loved one can erroneously become a stranger and a trusted friend can become a dangerous enemy. Close the shades at sunset, remove rugs, arrange furniture so it is not in the way of the route to the bathroom or bedroom.

Put yourself in the person’s place. Work hard at imagining what might be troubling them. Then see what you can do creatively to correct, distract, and/or remove them from the situation.

Create music and art activities. They can provide a person living withDementia/Alzheimer’s with hours of productive fun as well as provide a sense of accomplishment and an opportunity for socialization with loved ones. Use headphones to listen to music from the PLwA’s era or that they used to be able to play. If artistic, but no longer able to practice their art, try to find a replacement. Reintroduce (careful if maybe insulting) coloring, crayons, pencil sketching, finger painting.

Activities must be meaningful and foster success. Try to make the activity one where they can experience success and also one which will be meaningful to them. For example: household chores, help with meal preparation, cleaning up and setting the table, folding laundry, reading, watching TV, playing a DVD or video.

Toys can help entertain. Many toys can provide sophisticated ways of spending time. Others, like dolls or Teddy Bears, can provide something to do with the hands as well as emotional support and harken back to earlier memories. Crossword puzzles and jigsaw puzzles come with various levels of difficulty.

Tailor the environment. As a person’s needs change, so must the environment inwhich they live. Be careful about rugs that may cause a fall or furniture that may not support their weight. Keep sharp and dangerous items out of sight or under lock and key. Make it easier for them to find what they might need and try to keep everything in its place.

Meals can become complicated. When eating at a restaurant, help guide the PLwAthrough the choices depending on their cognitive abilities which can range from “What do you feel like eating today?” to “Do you want chicken or fish?” to “Oh, this chicken dish looks good, shall we try it?” Meals at home, if causing difficulties, can be served one course at a time, be easy to pick up with fingers, be easy to chew and swallow. Sometimes the color of the table, table cloth, and/or dishes can soften dinner time difficulties.

Be flexible. As the diagnosed person's needs change, so must their activities and environment change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.

Be aware of medical changes. Some of the changes may not be apparent so if you see a change in behavior that is not explained by anything obvious to you, and that seems to last for an inappropriate period of time, maybe it is time for a visit to the doctor for some tests. Infections, digestive problems, or physical injuries are just a few that might be happening but not visible to you.

Be selfish. Most people will be taken back by this term, but I maintain that if you do not take care of yourself, you will not have the energy or health to give to another. Find ways to relax, to refresh yourself, to get away for a short period of time, to make sure you visit your own doctor as needed, and to enjoy yourself when and as you can.

Ask for help. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone has a life of their own and most are oversubscribed. But there are ways that others can help to lighten your day-to-day.

Look to your community for help. If not family or friends, check out the possibility of getting respite help from local high school or university students, from your church, from a neighbor, from your housekeeper, from your city’s Senior Citizen Center, from your local Alzheimer’s Association. Even an hour by yourself can help you keep your sanity.

You can do this! What choice do you have, really? Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room – you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself, even though you are devastated, will help.

You are not alone! In the United States over five and a half million people are living with Dementia/Alzheimer's and this number is growing. 16 million people are helping to providing unpaid care for them. This includes over 18 billion hours of care at a value of over $232 billion dollars!

Waxing philosophical: It will...get better ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected. For others, dying will be anticipated, slow, and/or very painful. Doing our best to help others reach their end as comfortably as possible is the best we can do and to hope in turn that it will be offered to us! It is a blessing to be able to do this for one another.

Usually, a parent wins the race to death. While one might say “they lived a long healthy life” or “they had a blessed wonderful life,” often that does NOT lessen the grief and feelings of loss for the children; even if the parent is “in a better place” or “no longer in pain.” Sometimes these platitudes help, other times they do not!

With a spouse, either you or your partner will win the race.” Interestingly, the person diagnosed with Dementia does not always win the race! Often the caregiver partner is the first to cross the finish line and to leave this life.

With a sibling or friend, the contest may have either one of you be the winner.

Having conversations about death with the person dying, while they are still able to express themselves, helps them to die with dignity and helps you to serve them in a way that follows their wishes as closely as possible.

Remember, one size does not fit all. Again, there is no one way for these types of conversations to take place. They may take place easily or they may be a very difficult topic to broach, for some or everyone involved. You must determine whether to continue these conversations depending on how your loved one reacts or if they let you know they do not wish to have these discussions! You might drop the subject and try to bring it up again at a later date.

Grief always takes its toll. when someone we love dies. Talking about the death helps, in the long run, to ease the mystery of life and the mystery of death. Telling our stories to each other and listening to the stories of others, gives us a common ground which allows for grief to express itself.

There is no one right way to grieve, no time period in which it should take place, and no right or wrong way to do so. In some ways, one never gets through or gets over grieving, it just becomes a little easier to carry the grief. The problem as well as the joy is that with great love, there is great grief!

The greatest mystery in life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. We hold on to it our entire adult life and it can color how we face living each day. Hopefully, death’s mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others and for ourselves during the time we have available.

You are not alone! You can do this! Believe in yourself! It will not be easy but it can be done well! A diagnosis of Dementia/Alzheimer’s does not have to be a deathsentence but rather can be an invitation, not necessarily an anticipated one, to live life to its fullest!

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© 2019 Positive Approach, LLC Online Dementia Journal – June 2019
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