FOR GREGORY

Periodically I will add posts here if the sources provide additioanl informaiton on how to think about and deal with Dementia/ Alzheimer's Disease.

PLEASE NOTE:


SCROLL DOWN FOR TEXT and BIBLIOGRAPHY from DAI WEBINAR 2/22-23/2017. You can also find this information on my website: www.horvich.com


Even though this blog is now dormant (see info below) there are many useful, insightful posts. Scroll back from the end or forward from the beginning. My guess is that you could spend a lot of time here and maybe learn or experience a thing or two about living with and loving someone with Dementia/Alzheimer's or maybe come away with the feeling that "you are not alone" in YOUR work with the same!


• • • • •


THIS WAS THE FINAL POST TO THIS SITE BEFORE IT WENT DORMANT.


Happy New Year 2016. With a new year comes new beginnings and sometimes endings. If I am personally progressing and if I am doing a good job in my grieving Gregory's death; if I have been able to learn my lessons in living and loving someone diagnosed with Dementia/ Alzheimer's; if I am to get on with my life ... I need to bring this Alzheimer's blog to an end since my writing has been dealing less with Dementia/ Alzheimer's and more with life after Dementia/ Alzheimer's.


Of course, I will always continue to work for and support fair treatment on behalf of people with Dementia/ Alzheimer's and may post here from time to time. Also, there are many wonderful posts here through which you may browse.


With this change, I will continue and reinvigorate my "michael a. horvich writes" blog which deals with grieving Gregory's death, life lessons, personal experiences, observations, memoirs, dreams, and humor in essay and poetry, as well as an attempt now and then at sharing a piece of fiction.


Please follow me there by clicking http://mhorvich.blogspot.com or click the link located on the right side of this page.


Finally, COMMENTS are always important to me and you can still comment on the posts on this blog! CLICK "Comments" and sign in or use "Anonymous." Leave your name or initials if you wish so I'll know it's you? Check the "Notify Me" box to see my reply to you.



Wednesday, September 30, 2015

Monday, September 28, 2015

A Very Special Thank You Note

Sol Flores, executive director of La Casa Norte, a support organization for Latino families and one with which Gregory and I have close ties, recently visited Gregory.

I received this note in the mail a few days later. You have no idea how much it meant to me. Thank you Sol!

Sol instinctually knew that Gregory exists, and matters. So many people forget the person and only see the disease!


Senior Gems of Alzheimer's

Thanks to Teepa Snow for this look at the stages of Dementia/ Alzheimer's. I had the wonderful chance to hear her speak not long ago. She has the ability to take the complex and make it easier to understand! http://teepasnow.com


A Small Glimmer


Sunday, September 27, 2015

This post at DailyOM is a well written look at the gift of being able to care as a guardian for someone.
http://www.dailyom.com/articles/2015/49850.html

September 27, 2015
Acting as a Guardian
Just Being There

by Madisyn Taylor

To act as a guardian to somebody during a difficult time is a most beautiful gift of support.


One of the greatest gifts we can give another human being is to act as their guardian. Whether this gift is related to a specific situation or is representative of an ongoing commitment, we each benefit from the association. To protect someone is to walk with them in challenging times and see them through safely to the other side. In doing this, we grow with them. And those under our guardianship derive confidence from our support and assistance, enabling them to persevere through almost any conditions. 

There are many reasons we feel inspired to serve as guardians to those we care for. Sometimes just holding the space for somebody allows them to do what is necessary to grow or heal. We may simply want to see that our friend or loved one is taken care of and equipped to prevail over difficult circumstances. We may also sense that we are in possession of knowledge our loved ones are lacking yet need in their current stage of development. Our offer to serve as a guardian may also be both unsolicited and unrelated to any one situation. Instead of helping someone we care about cope with a specific challenge, we may find ourselves providing them with a more general form of emotional sustenance that prepares and strengthens them for challenges yet to come. 

Our ability to empathize with those under our guardianship is our greatest asset because our comprehension of their needs allows us to determine how we can best serve them. Even when this comprehension is limited, however, the loving intentions with which we enter into our role as guardian ensure that our care and protection help others grow as individuals while living their lives with grace. 


Living Alone With Dementia

Besides my own writing, you may have noticed that I have begun to include the writing of others on this blog. The "Others" are people with dementia and the writing is from what I call the "REAL" side of it, the side of the person who is living with dementia.

Early on, a buffer protected Gregory from really realizing his situation, his decline and we were never really able to discuss what it was like from his point of view.

I certainly worked at holding his point of view in all (most) of my actions if only because of our love, our 40+ years together, my observations, my research and studies on Dementia/ Alzheimer's.

But until I met Kate Swaffer, I never really understood what it must have been like for Gregory in so many ways.

This article shared by Kate Swaffer, written by Dr. Judy Galvin, goes one step further. It is from the point of view of a person with dementia who lives alone, a scenario I never even began to consider.

Yet another "gift" of Alzheimer's to me as I continue to grow in patience, compassion, and understanding not only towards Gregory but all of humanity. That may sound self-serving and grand, but so is Alzheimer's!

http://kateswaffer.com/2015/09/27/living-alone-with-dementia-by-dr-judy-galvin-dam2015-day-27/comment-page-1/#comment-60637

Thursday, September 24, 2015

Today's Visit

Gregory requesting his Peaceful the Bear
from the nightstand.

Family portrait: Gregory, Peaceful, and Michael

Gregory was coincidentally dressed
to match the mum I brought.

Almost smiling but definitely happy!

Who doesn't love a Starbuck's Latte?

Gregory happily "cooing."

Close-up of Gregory happily "cooing."

Training the Trainers

Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.

Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers. 
I am reprinting part of it here, you can click through to the entire post using the link below.
Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.
Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.
While my first thought was "it was done with love" (which made me feel better) and my next thought was  "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved. 

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you're about to answer.

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry.

They may humiliate you or make you feel a burden, when offloading about how stressed they are.

Wednesday, September 23, 2015

Massage Nirvana

Today was Gregory's first meeting with the hospice massage therapist. Ernie Love, perfect name for how good he was, taught for 30 years then went into massage therapy. He volunteers his time with Midwest Palliative Care and Hospice.

I filled Ernie in a little about Gregory: past and present. He was very gentle with Gregory and most of his body work (done on Gregory in his wheel chair) was informed not only by experience but also by intuition and his ability to read Gregory's reaction and involvement in the massage process.

While working with Gregory, Ernie would talk about what he was doing, what he was experiencing, and what feedback he was feeling from Gregory. Then he would come over to me and demonstrate on my neck, my back, my head: what he was doing with Gregory and why.

Gregory trusted him from the beginning and disappeared (in a good way) into the process including working with Ernie during various moves. You could see Gregory concentrating, pushing back, rocking into Ernie's motions. Gregory would grimace but less due to being in pain and more to the good pain of having your muscles, tissue, joints, etc moved, flexed, stretched.

Periodically I would ask Gregory if he was OK and he would reply "OK." I would ask, "Is it good?" and he would reply "Good." The amazing response came after approximately an hour of work. Ernie sensed that Gregory had had enough of a workout and told Gregory he was finished with the massage. Gregory gave a big sigh and without prompting said, "Wonderful."

Both Manny and I watched and listened and agreed that we learned a lot from Ernie. His philosophy was to help Gregory, especially since he is always in his wheelchair, get in touch again with his body and to be aware of the movements, pressure points, releases. Ernie referred to Gregory's body being able to get in touch with his "new normal."

Manny, Halina, and I will continue to give Gregory massage work and Ernie will be back again on Monday. Being a volunteer we are not sure how often he will be able to visit but we are grateful to him and to Midwest Hospice for the experience today.



Hatikvah

As we welcome in the Jewish New Year, 5776, these ideas come to me.

There is something about this piece, Hatikvah, the national anthem for Israel, that always moves me to tears. For me, it holds the hopes and prayers of not only the Jewish People but also any person, any group of people, any country who has yearned and worked for the right to be who they were meant to be, to be free from oppression because of their beliefs.

Most recently at the Lieberman Center, at a Sunday Concert, the performer played it with gusto on our grand piano. Slowly you could hear the under current of voices joining in, sometimes knowing the words other times just humming. Voices weak, weary, confused, lost or otherwise. Voices strong, resilient, sentient, determined or otherwise.

Never overwhelming the music, but raising from the heart, from the soul, from the place where ancestors live; much like a prayer, to blend in with life, love, freedom, and joy.

CLICK HERE AND LISTEN AND WATCH





Grief

The way we learn is through direct experience, not by reading about something or being told about it by others. That book or that other person, however, may be a catalyst to help you begin the process of learning. I am posting the following DailyOM because it speaks to grief in a way that I have directly experienced it. If its wisdom can be passed on to help you begin to see grief the same way, may you know you are not alone!


http://www.dailyom.com

Grief can arise from many life situations, but know it is not a permanent state of being.

September 23, 2015
The Process of Grieving
Becoming Whole Again

When we experience any kind of devastating loss, whether it is the loss of a loved one, a dream, or a relationship, feelings may arise within us that are overwhelming or difficult to cope with. This sense of grief can also come up when we are separated from anyone or anything we have welcomed into our lives. And while it may feel like we are caught up in a never-ending spiral of sadness and emptiness, it is important to remember that the grief we are feeling is not a permanent state of being. Rather, grief is part of the process of letting go that in many ways can be a gift, allowing us to go deeper within ourselves to rediscover the light amidst the seeming darkness.  

The emotions that accompany any kind of loss can be intense and varied. A sense of shock or denial is often the first reaction, to be replaced by anger. Sometimes this anger can be directed at your loved one for “abandoning” you; at other times you may feel outrage toward the universe for what you are enduring. And while there are stages of grief that people go through – moving from denial to anger to bargaining to depression to acceptance – the cycles of grief often move in spirals, sometimes circling forward and then back again. You may even experience moments of strength, faith, and laughter in between. While these emotions seem to come and go sporadically, it is important to feel them, accept them, and allow them to flow. With time, patience, and compassion, you will eventually find your center again. 

As we move through our grief, we may find ourselves reluctant to release our pain, fearing we are letting go of who or what we have lost. We may even regard our movement toward healing as an act of disloyalty or giving up. Know that while the hurt may fade, the essence of what you had and who you loved will have already transformed you and forever stay with you. If anything, once you are ready for the pain of your loss to subside, their memories can then live more fully within you. Remember, that healing is a part of the spiraling cycles of grief, and that in letting yourself feel restored again, you are surrendering to a natural movement that is part of the dance of life. 


 

 









Tuesday, September 22, 2015

Yom Kippur 2015

For Rosh Hashanah Jewish tradition has one go to the water to cast off one's sins. Traditionally, Gregory and I would visit Light House Beach on Yom Kippur to do our casting off. 

"Sins" is another discussion not appropriate here.

Anyway, I had a lovely 30 or so minutes at the beach with Gregory in my thoughts. 

Seagulls were singing, waves were singing, crickets were singing, the wind in my ears was singing.

All in all I believe Gregory and my New Year will be a good one!

Happy New Year to all my Jewish family and friends and wishing a GOOD year for everyone I know, and those I don't know as well!


























Taking a Bath Made Easy

Came across this wonderful article on helping a PWD (Person With Dementia) successfully take a bath! Professional and family caregivers often report bathing as one of the most challenging areas of dementia care. People with dementia often refuse, withdraw, or fight during a bath or shower. There are many things that can trigger these unhealthy responses and many of these triggers can be controlled.

CLICK HERE TO SEE ARTICLE:
http://www.crisisprevention.com/Blog/October-2010/Tips-To-Reduce-Bathing-and-Showering-Challenges-A
For some, life is a little blurry!

Sunday, September 20, 2015

Thinking About Gregory

Let me move to some changes I have been able to make in my thinking based on my new awareness of who I am.

Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing. 

Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!

"Storm and Stress" is the English translation of Strum und Drang,  a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.

So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.

Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30. 

He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats. 

He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.

I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?

So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.

If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.

But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.

It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that. 

A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.

Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.

I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!

I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!

So back to 

Saturday, September 19, 2015

ALZHEIMER's: A Love Story - The Documentary

As of 9/19/15, the documentary has been accepted into six (6) film festivals: 1) RHODE ISLAND INTERNATIONAL FILM FESTIVAL, 2) DOCUWEST in Denver, 3) DOCUTAH in St. George Utah, 4) CHAGRIN FILM FEST, in Chagrin Falls, Ohio, 5) LAGUNA FILM FESTIVAL in Laguna Beach, California, and 6) SAN PEDRO INTERNATIONAL FILM FESTIVAL in San Pedro, California.

See below for more info.

THE DOCUMENTARY "ALZHEIMER'S: A LOVE STORY," DONE AT CHAPMAN UNIVERSITY, DODGE COLLEGE OF FILM AND MEDIA ARTS AS PART OF THE COMMUNITY VOICES PROGRAM. It will be available for public viewing sometime in 2016 after it has been entered into any number of film festivals. Watch for it here! Meanwhile check this page for periodic updates!
By Gabe Schimmel, Monica Petruzzelli, Amanda Le, and Riani Astuti featuring Gregory Maire and Michael Horvich.










What Am I? Some Beginning Thoguths

This entry was also posted on  my writers blog as it includes both general writing and Dementia/ Alzheimer's thoughts. 

I have been reading Dropping Ashes On The Buddha: The Teaching of Zen Master Seung Sahn. Through questions, dialogues, stories, interviews, and Darma speeches, he shares his knowledge of Buddhism.

In many of the writings, it is suggested that one meditate on "What am I?" as a way to finding the Buddha. While that sounds a little self serving, I did want to write about my thoughts on "what I am" in relation to what I have learned through my studies of Buddhism. 

As I have mentioned in previous posts, I was born Jewish and have studied many religions but have never found as much "Peace of Mind" in any of them as I recently have found in my studies of Buddhism.

In my current situation with Gregory and our path with his Dementia/Alzheiemer's I desperately needed, and have gratefully found some Peace of Mind.

So here are some of my current thoughts on "What am I?"


What I Am?

I was me before I was named Michael by my parents.

I was me before I was born into a Jewish family, raised with Jewish traditions and beliefs, had my Bar-Mitzvah.

I was me before I went through the usual sequence of schooling: Primary, Secondary, College, Post Graduate Work, Workshops, Seminars, Training Sessions, Textual Readings.

I was me before I was told what and how to think by my parents, relatives, neighbors, friends, teachers, religious leaders, books, newspapers, films, TV, and the general world around me.

For that matter I was me before I learned anything; while I lie in my diapers, wet or otherwise, suckled my mother's tit and then the rubber nipple, slowly ate pureed foods and then moved on to solids.

I was me before I realized I had a civilization, a culture, and a full background of experiences on which to base my thoughts, understandings, feelings, emotions, etc.

I was me before I had language to label, classify, and categorize things and definitely before I had likes and dislikes, rights and wrongs, happys and sads, successes and failures.

I was me before I realized the difference between male and female, before realizing I was a male, a gay male at that who had deep feelings for other men; comradely feelings, sexual feelings, love feelings.

I was me before I considered myself an educator, a poet, a writer, a photographer, a bookbinder, an actor, an artist, and more.

So if I am not able to use any of this information to tell you "Who I am" then who am I? Lets use the concept of "emptiness." If I am just who I am without using any of the "baggage" I have come to accept about myself; through what I have heard, through what I have been told, through what I have experienced, through what I have learned; then I am just who I am.

I can be empty, without any judgement of myself and my life. I can create how and with what I want to fill myself, as long as I hold on to the idea that "in the beginning" there was this baby born into this world, and he was pure, and his was truth, and he was in touch with all he needed to know. That is who I am!

Let me move to the next level of my thinking.

I sit here and I see. It is as if I live in this body and my eyes are the window to my world. It is as if I sit at a console with a screen in front of me which is attached to a camera and I monitor the world in front of me, and around me as I rotate the camera.

I see a green coffee mug with steaming, delicious liquid in front of me and I raise it to my lips, take a careful not to burn my tongue sip, and place it gingerly back down on its coaster so as not to leave a ring on the console.

But if I take myself back to my pre-labeling, classifying, and categorizing self where am I? What am I doing? How do I describe it? How do I think about it? Do I assign good or bad to it, happy or sad to it, right or wrong to it? 

Or is it just what it is? I see what I see. I see.

Each night I read a little more of Dropping Ashes On The Buddha. Perhaps it is slowly affecting my thinking. As I was drifting off to sleep, my kitty at my side, I was stroking her fur thinking how soft she is. I realized I had labeled her "kitty" and her "fur" and described the feeling as "soft." 

So then I tried to just feel her without adding any descriptors, with keeping my mind empty, and I seemed to experience her in a totally new, and different way than I ever had. With no words to get in the way, although I use them now, "softness" seemed a whole new experience for me. I was amazed.

What Am I? If I am able to not label things in my life as good or bad, happy or sad. If I see them just as things without positive or negative value, if I can avoid labeling, if I can avoid judging, then suffering can be defused. It can cease to exist. And what does exist is just existence.

Life is what it is. I am what I am. There is an emptiness involved when you do not have to fill up your life, your person; with descriptors, with qualifiers, with judgments, with labels, with rights and wrongs, with goods and bad.

It is what it is. It is how you choose to live it.










Friday, September 18, 2015

The Case for "Living Beyond Dementia"

Again my friend in Australia, Kate Swaffer (who is living well beyond dementia) so accurately, articulately, if not eloquently states the case for living beyond a diagnosis of dementia. I share he current post here: CLICK HERE TO SEE POST

Thursday, September 17, 2015

A Novel Idea

Edie and Anne are new blog friends from Victoria Australia.

Novel idea – dementia-friendly street party to de-stigmatise condition
  • Edie and Anne are a couple from Victoria. Edie is living with younger onset dementia. Edie and Anne are calling for the “more informed” among us to take action and assist in spreading helpful and positive messages to de-stigmatise dementia and create more dementia-friendly communities. And what better way to celebrate than with a big dementia-friendly street party? #ItStartsWithYou

Monday, September 14, 2015

New Milestones

Thanks for counting along with me and being a loyal reader. As of today we are 20 hits over 64,000 with 1257 posts.


Yesterday, ALZHEIMER's: A Love Story played at the DocuWest Film Festival in Denver. Alaksh, previous companion to Gregory and now "family member," and Kat, friend and Roger's niece, were in the audience. They reported that the audience responded deeply to the documentary. There were 7 others, each receiving applause when over, and ours which created a still, pensive, moved silence before the applause began. That has to be a good sign!

Sunday, September 13, 2015

Appendectomy With An Awareness

This took place last Tuesday, September 8.

The severe pain started at 10:00 Tuesday night. I took myself to ER at 3:00 Wednesday morning. Had surgery by 9:00.

God Son Isaac sat with me during recovery. Jan, his mom/my friend, dropped by to spell him. Slept fairly well. Came home Thursday by 10:00 driven home by Manny. 

Doing fairly well and taking it easy at home. Amazing what they can do now-a-days. EVERY doctor, nurse, aide, staff member at Evanston Hospital was cheery, friendly, helpful, caring.

The food was horrible: sewer water chicken soup, oily red jello, bitter tasteless coffee. 

The great timing of all this is that I was due to fly to Portland to visit friend Pat on Wednesday. Can you imagine how this would have come down if I was on the airplane or even in a new city without my own home for comfort? I am grateful to the Universe. 

Given the situation, and my staying low key, I haven't visited with Gregory since last Tuesday, some 5 days ago. In debating whether or not to visit today (still feeling a little stomachy and nauseous) I realized that I constantly think about him non-stop. Even thought we are not living together, his presence is with me emotionally, physically, and intellectually.

I know that he is in good hands with Lieberman and Manny and Halina. The reality is that after five days he may not remember me or think about me as I do him. I'm not saying that he does't know who I am anymore, but without the trigger of seeing me, I am probably not part of his awareness. 

This led me to the realization that I NEED him MORE than he NEEDS me! Interesting. As long as he is happy, content, safe, well fed, kept clean, and somewhat entertained ... his life is full and he is OK. 

I am the one who suffers when we do not see each other. Not really sure what all this means so will have to think more about it. But an interesting awareness don't you agree?



Friday, September 11, 2015

Communication By Facial Expression

When I visit Gregory during meal time, which I often do, Manny and I take turns helping him with his meal.

When Gregory is with Manny, I help the other people at the table with their cloth napkins (do not call them bibs,) open and pour their thickened juice drinks, get a glass of ice water for Gregory and Martha (they seem to prefer it to the juice) and sometimes I help with feeding those who cannot do it themselves.

Directly across from Gregory is Alvira (close but not really her name to protect the innocent.) She is blind from what I can tell and when she does feed herself it is usually with her hands. Most often she waits patiently until one of the CNAs can help her, but on very busy days, I chip in.

She opens her mouth very little and therefore it is hard to get any food in. It is kind of like a balancing act but if one pays careful attention, one can get the spoon to her mouth at the right time and unload most of the food. She is on a "Puree Diet" so the food is creamy, moosey, custardy and it goes down easily.

When she is ready for the next bite, she will put her gnarled hand on your arm and stroke it. When helped patiently, she eats quite a full meal.

Yesterday I was helping her eat and I noticed that Gregory was watching us. He had such an engaged, empathetic, grateful look on his face watching me help Alvira. He needed no words to communicate to me that he was happy I was helping her and in some ways wished he could. His empathy for those around him is great and it is beautiful to see.

Good Will Ambassador

When I visit Gregory during meal time, which I often do, Manny and I take turns helping him with his meal.

When Gregory is with Manny, I become a good will ambassador in the dining room. I circulate among all of the tables chatting with the residents. I know almost all of them by name.

 I free free to tap a shoulder or hold a hand. I have even been brave enough to offer a kiss or hug now and then to a few of them.

I ask how they are feeling, I ask after their day. I  listen to their comments and complaints. I  compliment their clothing or their new hairdo.

Sometimes they will ask me for more juice, or a bit more food. Sometimes they will ask for, or I will suggest,  a PBJ or toasted cheese sandwich if they do not like the day's food offerings.

I offer to help a resident cut up the chicken into easy bite size peaces. Sometimes the resident will refuse. I respect their refusal but quality by saying, "I used to be a waiter, you know!" Often she will relent and push the plate toward me for cutting.

Sometimes I will let a CNA know that "so and so" hasn't eaten any of her meal or "so and so" is so sleepy that she is nodding off into her mashed potatoes.

Sometimes a residents feel frightened or confused and I can help calm them, sometimes if only for the moment with their returning to the same fears moments later. But at least for the moment of our interaction, they felt peace.

Sometimes they mumble or gesture and I behave as though I know what they are saying with a nondescript: "Uh huh" or "I see!" or "I know what you mean." If they are mumbling with a happy face I know that I should enjoy with them. If they are mumbling with an unhappy face, I know I should empathize or comfort them.

Often I will lie. Lie to a resident about when their son is coming to visit, how they can get home before dinner, if their husband is still at work, if they can go down to buy a new pair of shoes.

I have found that the "lying" comes fairly easily if I have no expectations of solving a problem or understanding what the problem is. Also my background in writing "Creative Non-Fiction" helps me weave stories for the resident that meets their needs, even if incorrect or a lie.

Notice that I have used the words OFTEN and SOMETIMES a lot. This reflects that day by day, hour by hour, sometimes moment by moment perceptions; needs, moods etc are in a constant state of change for many residents. For some residents, they are not at all present but still will respond to a touch, or a song, or the taste of food on their lips.

I get great joy in my role of Good Will Ambassador and feel that this should be a role on the unit. One person could be available just to chat, interact, smile, tap, shake a hand, tell a story, listen to a story. Wouldn't that be lovely?




Discrimination Two Ways

Through my friend Kate's blog http://kateswaffer.com, I discovered the Dementia Alliance International website. Good idea and I believe that it is so important for people with Dementia to have a place to go for support and advocacy.

From Kate's readings, I have come to understand that too soon and sometimes inappropriately, people with Dementia loose their rights as others make decisions for and about them. This includes not only families but also government, hospitals, organizations, conferences, workshops, and other educational experiences which pro-port to support them.

I have had to make Gregory's decisions for a number of years now and it is a very difficult thing to do. He and I have discussed many of the issues while he was still able and I use those as a baseline for decisions I now have to make on his behalf.

At a certain point, the ability to make decisions for oneself must be turned over to a person who will make them for you, hopefully with love, respect, understanding, compassion, etc. If a person is not there for you, health management advocates are available. While the later might not know the person the advocate for, the are bound by fiduciary responsibility.

Never-the-less, this turning point of decision making, balances on a fine line between the "Ws:" when, why, and how, where, and under what circumstances. Questions raise to the top in my mind: When is the right time? Can we do this jointly? What if you protest? Am I sure it is for the best? Does it really matter? etc Can I decide for now but then give it back to you to decide if able? What is the best way to go about this? How will I decide?

I do have one problem with DAI, however. Members can only be people diagnosed with Dementia. I feel like the tables are turned and I am the being discriminated against. I believe that I am one of the "good guys." Don't lock me out! Honestly, I feel resentful.

There is another wave of attention towards women with dementia and women care givers. Even though the prevalence of women needing this support exists at a higher level for women than it does for men,  again I feel left out, ignored, and resentful. 

So I will advocate for Dementia/ Alzheimer's where ever and when ever I can but still am uncomfortable with this male/ female discrimination. Honestly while I have expressed my feelings on these issues, I do know know for sure if I am on target or have all the intellectual date to support my feelings.


Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.
http://www.dementiaallianceinternational.org

Tuesday, September 8, 2015

Where in the Hell is Matt?

These videos by Matt Harding are joyful and hopeful, as well as entertaining. In a world that seemingly continues to be a difficult place to live, we get to see that in so many ways we, each individual on earth, are all the SAME!



Check here to go to Matt's site:
http://www.wherethehellismatt.com

The Serenity Prayer: Rethought

I have been spending a number of posts on my blog sending feelings of love and compassion as well as UNASKED advice to my blogger friend Kate Swaffer. I think the reason I continue to fall in love with this woman is because she has given me so much insight into Gregory's side of this road on which we have been traveling for the last twelve years.

Perhaps I can give Kate insight into my side, the spouse's side of the road. I used to call it a path, but obviously over time it has become a  bigger and bigger part of my life so it has grown from a Path into a Road. It has grown in sorrow and joy, in fear and in understanding, in love and being loved. It has grown! But I would not exit this road for any reason or temptation you could offer!

* * *

Regarding your poem: Yes Kate fight it. Yes Kate keep on keeping on. Yes allow yourself a tear or two. But two items make me sad to hear.

ONE: YOU ARE NOT A BURDEN TO YOUR LOVED ONES!

That is like using the term "suffering with Dementia/Alzheimer's" rather than "living with Dementia/ Alzheimer's." They love you and do what they do and will need to do out of love! It just is! It just is!

Maybe I should put together acceptable language for use with those of us who live with and/or love someone with Dementia/ Alzheimer's! Gregory is not and never has been a BURDEN. It has been hard. It has been trying at times. It has been a bumpy ride. etc etc.

But it is what I do because I love him NOT because he is a burden. Would you take that part of love away from me? Would you take that part of love away from your family? Please don't. It is what it is!

TWO: TRY NOT TO BE A BURDEN TO YOURSELF.

I share my story by way of comparison, although I know my story is different especially because in my case the situation was curable. When I had cancer I lost a year. My way of dealing with it was to pull into myself, knowing Gregory was there for me when I needed it. I didn't want to be pampered, I didn't want to be hovered around. I didn't want other's sympathy (even empathy was difficult.) I hated it.

But similar to Dementia, I did have to depend of the kindness of others. I did have to slow down and take care of myself. When I pushed, I paid more than if I hadn't pushed. Over the course of the Chemo I got slower and slower, I got more and more tired, I was able to do less and less for myself.

The doctors compared the impact of Chemo to "Pregger's Brain" the reality that when a woman is pregnant, there are chemical changes that affect her thinking and sometimes her ability to function in ways she always had. The doctor even had one dedicated position in her office to help patients deal with filing insurance, paying bills, etc because of the effects of "Chemo Brain."

I share this because I hate seeing you beat yourself up. Becasue there are some things we can control in this life, there are others we cannot. Because there is a fine balance between "strenuous exercise" to work out a kink vs injuring oneself more. Because the only thing, in my opinion that matters, is loving and being loved! No matter what!

I am not saying you should "disengage from life" as you have discussed previously but rather "rearrange life" so the most important pieces are the ones you spend the most time with for as long as you are able. I would guess right up front there are your husband (BUB,) your sons, and then helping others when you can.

Here is my version of "The Serenity Prayer."

THE SERENITY PRAYER, MICHAEL’S VERSION 2009

Grant me the serenity
To accept the things I cannot change
Courage to change the things I can
Wisdom to know the difference.

Living one day at a time
Enjoying one moment at a time
Recognizing that life operates on a continuum not at extremes
Working towards balance in all things.

Holding on to the important parts of my life with all my might
While letting go of those which I can no longer hold on to.
Sitting with my pain and grief and suffering
But also letting them go while learning their lessons.

Understanding that growth in awareness is continuous
But knowing that all things are not knowable to me
Keeping an open loving heart with healthy connections
Even if loss of those connections will cause pain.

Accepting this world as it is, not as I would have it
Accepting the people around me as they are, not as I would have them.
Trusting that all things will be right.
Trusting with faith in myself, that I may be content in this life.

(Thanks to Reinhold Niebuhr author of the original Serenity Prayer.)

Sunday, September 6, 2015

Kate

Extremely moving post by friend Kate:

http://kateswaffer.com/2015/09/06/women-families-and-dementia-dam2015-day-6/#respond

Here is my reply:

Kate,

Often people will say, "I know exactly what you mean!" and it rings so false and so placating. However, again with tears blurring my view, I know so well almost everything you have discussed in this post. In some ways nothing I can say will lessen the impact and intense sadness you discuss.

Changes in relationships, socialization,  sex, movies, TV etc are the easy ones to overcome. Being the one who could still change while the other can no longer, is somewhat less easy but still OK. The slow disappearance of the person you love most in the world is the painful one.

For a long time I softened the concept of "carer" by calling Gregory and me a "Caregiving Team." I used to say to others (not expressing but feeling anger) I WASN'T a caregiver; I was a partner, a friend, a soul-mate, a lover, a spouse - and caring is what you do when you love someone.

While sometimes it was hard to separate the anger from its cause, I always knew it wasn't with Gregory that I was angry.

Fear? Yes. Worry? Yes. My own frustration and confusion? Yes.

Eventually I did become the care giver and now with the Lieberman Center Memory Care Facility in the picture I have become the secondary caregiver but I have won back quality, wonderful time together with Gregory.

It has been a difficult journey but I chose freely to walk beside Gregory on his path and somehow the love wins out, gives extra strength, helps us find the way, stifles the fear and worry, and keeps us going for those we love. It has for Gregory and I as it will for you and BUB and your family.

Fondly,
Michael

Friday, September 4, 2015

No Apologies Necessary

Kate Swaffer shares some of her thoughts, memories, and fears on being diagnosed with Dementia. The video she created is moving and will help put you in her shoes.
http://kateswaffer.com/2015/09/03/women-and-dementia-3-dam2015-day-3/

This is the reply I wrote to her:


Dear Kate,

I wish I could take all your pain, your fears, your guilt and smooth the edges. I wish I could help you focus only on the strength of your love for those around you and for all of us who have come to know you.

I wish I could help you focus only on your family's and our love for you. I want to say, "We love you as you are and as you will be. You have given us so much with your perspective and your love, let us give some measure of peace of mind back to you in exchange." 

I am barely able to type this for the tears from your video as they help me to begin to understand what Gregory must have gone through but was unable to share with me. His inability to share was due to his loss of language.

Also, I believe that the Dementia/Alzheimer’s blessedly put up a buffer to the reality of what he was going through. In addition, the safe zone in every day living which I was able to create for him gave him peace. 

So I love  him with all my heart, more each day, and say it was and  is my duty to be there for him as he always, even today, has been for me. He is not a failure, he owes no apologies, he is love. He is my life.

I have no control over the details so I will embrace him always as he is, as he will become. I love him More Than Ever (the name we together gave our trust and educational foundation.)

Gregory knows, and I often tell him, how much I love him and I hope he knows that there is nothing in our relationship, in our 40 years together, in the world that he needs to apologize or feel guilty about. 

I also know he has forgiven me my trespasses and I do not feel guilty. There are some things I would have done differently during our journey with Dementia/ Alzheimer's but I did the best I could, and everyday I learned anew, and I did it with love in my heart.

My “Intuitive" described the hole that has been torn out of my chest, around my heart; with its pain and loneliness and tears; as the sacred place where Gregory and I can still be, and always will be. together. I will not try to fill that hole, I welcome it. 

Kate, may you find peace and comfort in your great love of family and of life and may you be reminded that all things are impermanent and this can be the joy of life as you quietly sit with it today and then tomorrow. I don't "know" you Kate, but I continue to come to fall in love you!

Fondly,
Michael