Two Words

This article on Autism and how not to respond to a diagnosis and how you might respond can beautifully apply to Dementia! Sharing it with you from: 
The two words you should say to someone facing an autism diagnosis
This blog is from Mandy Farmer who writes a blog called From The Bowels of Motherhood where she writes about raising her three children, one who has autism, and her military family life. You can read her original post here.

We have been through the diagnosis.  We have been through the IEPs and evaluations.  We have navigated education systems in three different states.  I am beginning to feel like a veteran autism mom.

As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their own children and I didn't know what to say.  I think I found myself tongue-tied because all I could think about was all of the things not to say.  All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife.  During my discussions with these moms all of those comments came rushing back into my head.  Some almost came out, because I just didn't have the right words in that moment.  Wow, this is what it feels like to be on the other end of this conversation.  Even without the right words early on I just couldn't bring myself to say the wrong ones.

I wouldn't say "I'm sorry."  I heard a lot of these.  And they were always empathetic and heartfelt.  But they made me feel worse, not better.  I didn't want people to be sorry for me.  While this life might be different, it is not less.  While my child might miss out on some things, he is not less.  His life and his diagnosis are not things I feel sorry for, you shouldn't either.

I couldn't say to these moms "He'll be fine."  I don't know if your child will be fine.  I don't know that early intervention will move mountains.  I don't know what the next twenty years looks like for you and your family.  And when people told me "You caught it early, he will be fine..." it hurt.  If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed?  Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine."  ASD is very complex and no two journeys are the same.  Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.

I knew better than to say "Really?  He seems so normal."  I was surprised by how much I heard this one.  It seemed like a backhanded compliment.  But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.  

I would never say "Oh, I hope not."  I only got a few of these doom and gloom responses. They lacked empathy and pretty much damned us to a life of a misery in one simple phrase. It is not a comfort and it is not helpful to try wish away a family member's diagnosis. It's hurtful.  

You see, all of those are overthinking and overanalyzing someone else's situation. Those phrases do not comfort, they simply insert my opinion when my opinion was not asked. Parents facing an ASD diagnosis do not want unsolicited advice or pity. They do not want you to minimize their feelings or give false hope. They want you to listen. They want you to care. They want you to stay in their lives and not brand them as special needs parents. They want you to understand that although their lives might be taking a different turn, they still need friends.  Their children still need friends.

Then it came to me. The two simple and perfect words you can say: "I'm here."  And mean it.  Mean it through every struggle, every victory and every passing year.  Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands.  Mean it when you are making out the list of which children to invite to your child's birthday party.

They don't need you to be an expert on autism. They don't need you to always say the right thing.  Now, more than ever, they need you to just be there.  

Learn more about how you and your family can interact with and support people with autism by downloading our free "Friend's Guide to Autism" available in our Family Services Tool Kits section!

This is the text from Michael's comments to the over 100 people who attended yesterday's Memorial for Gregory in the Community Room at Gregory and Michael's condo in Evanston:

First, Thank you all for joining us today. 

Next, Let me acknowledge Manny Kagatan, who developed a very special bond and love for Gregory over the last twenty months of caring for him at the Lieberman Center in Skokie.

Manny gave Gregory love, and comfort, and joy, and music, and hope in a way that only someone … if they were not already a saint then for sure a highly placed angel … could.

Next, La Casa Norte, a not for profit providing support to homeless youth and families, who will administrate the More Than Ever Education Fund created by Gregory and me. If you would like to make a donation you can do so at the sign in table or online. http://www.lacasanorte.org

You will be hearing more about the roll-out of the More Than Ever Education Fund at the First Annual Casa Norte Education Fund luncheon in the spring.

Finally, In many ways Gregory and I would not be the people we have been without all of you in our lives. You have been a gift and a blessing to us.

This is a Celebration of Gregory’s Passing, NOT a Celebration of his Life. That is a different story which will be told later and over time.

Gregory died with serenity, peace, compassion, and love in a way that was his last gift of love to all of us.

Shedding his earthly body has freed Gregory from all that was the Dementia … Alzheimer’s. While his body and mind struggled for twelve years, he also had and gave much joy during that time and his soul … spirit … was never diminished. 

He is now free to dance again and to fly and to sing and to play his beloved piano.

We love you.

Comments Received

I am reposting these comments from Maarteen of South Africa to my post Manifesto For Radical Inclusion 

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As I replied, "We do not do this for the accolades but receiving comments like yours now and then does a lot to help one believe in self and to continue to feel JOY even though it is carried on the shoulders of SORROW! (See full reply below)

• • •

AnonymousAugust 6, 2015 at 4:16 AM

Dear Michael, your approach on this matter is mature, realistic as well as kind, supportive and loving. To accept and then to live life to the fullest (possible) in the NOW is the ultimate in Living Life Well (with or without dementia, cancer, etc.) I agree with you and believe I am qualified to do so because I live well with Vascular Dementia and have full inclusion in my life and have selected as early as necessary my neurologist, psychologist, psychiatrist, curator and recently the care facility I want to go to when the tme comes when I cannot live on my own any longer. I am still part of family and community and my opinions are respected although I know (although not always realising) that I am changing, loosing skills and abilities but I also know that I will always be fully included by everyone in line with the realities at hand. Thank you for your wisdom and continued inclusion of Gregory in your combined life as a couple. My partner have unfortunately passed away 3years ago but I just know that he would have been as excellent as you are with and for Gregory. May your life be filled with joy and peace. Maarten (South Africa)

Michael HorvichAugust 6, 2015 at 10:15 AM

Maarten, We do not do this for the accolades but receiving comments like yours now and then does a lot to help one believe in self and to continue to feel JOY even though it is carried on the shoulders of SORROW! Gregory was never able to share how he felt going through his journey, I based myself on my observations and my knowing him well over the last 40 years. So hearing from people like you and Kate Swaffer gives me inside into his knowing that I love him and that all decisions have been with love. based on best practices, and in his best interests. My thoughts are with you and I wish joy and peace to you as well. Fondly, Michael

An Appeal To You

This Alzheimer's Blog continues to get 100+ hits a day. In June it will be 5 years old and with over 1087 posts, it has received 51,000+ hits. That is quite amazing to me.

It is read by people all over the world which is even more amazing! I truly appreciate that so many people are reading and following the blog and I hope that my writings have served to inform family and friends of Gregory's and my journey with Alzheimer's and that other readers have found the information useful, comforting, uplifting, supportive of their own journeys.

Of 51,000+ hits, there have been 348 comments left. I know that most people do not comment on any blog, I know that many family and friends have sent me separate e-mails in support. This amounts to point 7 percent or .07% of the readers who have commented.

What I would like, is to see many more comments made showing me that you are actively involved with these posts. You can sign in as "anonymous," or if you have an account on other services. You can add your name to the anonymous comment if you choose (or not!)

Your comment can be heart felt, deep, tear or joy filled ... or ... just something like, "I am with you." or "Thanks!"

It would make me feel very good to get these comments and I promise that I will reply to all that I receive. If you check the little box that says "Notify Me" you will get an e-mail letting you know that I sent a reply. That way we can complete the circle of communication.

SO HERE'S TO YOU AND LOOKING FORWARD TO HEARING FROM YOU!

Documentary Thank You and General Comments

The documentary screening in California was not about me. It was about the talented crew of students who put it together and about the experience itself for all five of us. But I decided that I wanted, by way of an "acceptance speech," process my thoughts and thank the kids, their instructor, and the university for their work and efforts and job well done.

Let me introduce myself: I am Michael Horvich. I am a man, I am 70 years old. I am a 40+ year life partner to Gregory Maire. I am gay. I am always a son although my parents passed five and ten years ago, I am a brother, I am a brother-in law. I am an Uncle and a Great Uncle. I am a family member, a friend, a colleague, an acquaintance, and a neighbor.

I am an educator, an acting extra with The Lyric Opera of Chicago, the curator emeritus of Michael's Museum: A Curious Collection of Tiny Treasures which has been a permanent exhibit at Chicago Children's Museum since 2011. 

I am a book binder, a photographer, a poet and a writer. I have been maintaining a blog about Alzheimer's which has received over 1070 posts with close to 50,000 hits.

As Gregory's abilities and communication skills slowly disappeared due to Alzheimer's Disease, the ability to talk about things, come to closure after an argument, make decisions together, and much much more slowly disappeared. Over time I found myself turning to my computer and my writing to help me be better able to organize and process my thinking, so I decided to sit down and write this speech of gratitude. Please allow me to read it to you.

First I want to give thanks, then I want to talk about dementia and how it affects a person, next I want to briefly look at Gregory and my being a same sex couple, and finally I will tell you my wishes for the future.

I am grateful to Chapman University, The Dodge College of Film & Media Arts, The Dhont Family Foundation, Professor Sally Rubin, the Documentary Crew Gabe Schimmel, Monica Petruzzelli, Amanda Le, and Riani Astuti for committing Gregory and my story to film, and for sharing it with you.

However, there are at least 5 million other stories out there about people living with Alzheimer’s that are just as moving, just as loving, and just as amazing. Each of those 5 million affected by Alzheimer's Disease are in their own unique way a hero and each person who loves and/or cares for the person with Alzheimer's is a hero as well.

Alzheimer's is not just a memory loss issue as many people think. If you look at who you are, what you think, what you are able to do ... you should understand that you are the sum total of every experience you have ever had, everything you have seen, everything you have been told, and everything you have learned.

You are the integration of all that. You are the connections your brain makes to guide your daily living activities, thoughts, goals, aspirations, and emotions. A person with Alzheimer's has begun the process of dis-integration regarding living, doing, thinking, feeling.

Let me give you an example. You realize that you are thirsty. To take a drink of water you are monitoring dozens of pieces of information. You reach for the glass without knocking over, you pick it up and hold it without crushing it or breaking it, you lift it towards your mouth without spilling, you place it on your lips without really being able to see your lips, you tilt the glass taking in some water without it dribbling down your chin, you know when to stop, you swallow and savor the cold chill of the water. You tilt again and take a second or third drink until your thirst is quenched.

The person with Alzheimer's may have no difficulties with taking a drink of water today but this might change tomorrow. It may change over time or it may change daily. One day it may be easy to drink, another day fairly easy, and another day difficult. Some days you cannot drink at all. The next day you may, or may not be able to drink easily or with difficulty. Eventually you will not be able to help yourself to that drink at all.

As the disease progresses, you not only cannot get a drink of water for yourself but slowly you forget how ask for that drink of water. You depend on others to keep you hydrated. Slowly you are unable to maintain the ability swallow, so you choke and need to drink thickened water. You might get some water into your lungs and you may be able to cough it up or you might not and you might develop pneumonia. All for a drink of water, you might die.

I share this story with you in the hopes that you will gain a better understanding of the disease and know it is much more than just memory loss. I hope you realize that each person who lives with Alzheimer's and each person who loves and/or cares for a person with Alzheimer's has a unique story to tell ... yet there is a universality in experiencing the disease. I can sum it up in one word: LOVE. That is what it takes to live with and love or care for someone with Alzheimer’s Disease.

While sometimes I am devastated by Gregory and my loss, most of the time I can re-live the beautiful past I have spent with him, I can tell my stories and tell his stories as well. I know that the disease has made our love stronger and that it has enabled me to be a better partner, a better caregiver, a better person.

It has enabled me to become a more compassionate person. I know that while Gregory cannot change his condition or what it brings, I can change and accommodate his needs and make his journey just a little bit easier. I can see and love Gregory as the person he was and is and not just see him as the disease he has.

Gregory is at times aware of his losses and was at times more and at times less aware of them through the various stages of his disease, but for the most part the disease itself creates a buffer for the person affected, protecting them from the reality of their losses. 

For some people, the losses are often frightening, frustrating, and confusing causing the person to strike out, argue, become resistive and/or violent. Using those words however is unkind as they imply intent and we must remember it is not a choice by the person with Alzheimer’s, it is the result of the disease and its effect on the brain. In addition to sensitive care and understanding, if necessary medicine and drugs can help make the journey a little easier but medications often cause more difficulties then they solve.

As Gregory continues to slowly disappear, I can make sure his life is happy, safe, and that he is well taken care of. That is what love is all about. I have learned how not to be selfish by seeing the world through my own eyes but rather through his eyes and basing all my decisions on what will be good for Gregory and on my love for him without thought of my comfort or distress.

One side note: We are a same sex couple, having been in a committed relationship for over 40 years. Although the tide is turning, many people still do not want to acknowledge our relationship, many states do not want to protect our rights, and few churches would choose to bless our relationship.

We have been able to take additional legal steps to make sure that our rights are not violated and that I can continue to take care of Gregory and make decisions on his behalf.

However, Alzheimer’s disease does not discriminate and does not take its direction from the law or from people’s sense of morality. Alzheimer’s accepts everyone no matter the circumstances. That said, in this story, the fact that we are a same sex couple should disappear when you realize that our story is simply about two people who love each other,  trying to deal with this insidious disease as best as they can.

While Gregory and my journey with Alzheimer's for the last eleven plus years might be moving, might bring on a few tears, might cause you to think differently about Alzheimer's Disease, or any dementia for that matter, remember that our journey is just one of many.

Do what you can to help: whether helping someone you know who has the disease, or being there for someone you know who is caring for the person with the disease. Be careful not to make others feel bad by careless remarks about forgetting, aging, memory, dementia, or Alzheimer’s. 

You can help by volunteering. You can help through your generous financial contributions to the Alzheimer's Association or your local Alzheimer's organizations and facilities.

Thank you. May the universe be with you and yours. May the cure for and prevention of Alzheimer’s and all dementias be discovered. May your journey through this life be one filled with joy and love.

Musings

This Alzheimer's BLOG receives between 50 and 100 hits a day. Out of some 36,000 hits in the four years since its beginning, there have been 265 comments for a .7% reply rate. But you know what, comments are not expected and notoriously absent when anyone who is a blogger is asked about their experience with comments.

As you know, I do not write for the comments. I write to process my grief and my joy, I write to share our situation with friends and family, I write in case my experiences and observations and insights might help others who are grieving.

We all grief when someone we love is experiencing any terminal, incurable illness. But the way Alzheimer's presents itself is more insidious than only a few other illnesses out there and therefore more painful for both the ones ill and the ones loving and caring for those ill.

Periodically I will run into someone who follows this BLOG and they will tell me how much it means to them or what an inspirational role model I am. This happened on Friday when I was at the Lyric Opera of Chicago's costume sale and I ran into one of the women who sings in the chorus. (Thanks CL!) We exchanged no fewer than three meaningful hugs :-)

Again, while I do not write for the celebrity, and while I know I am doing a good job caring for Gregory, it does make me feel good to hear from others who agree. Being a caregiver for someone you love so much is a heavy, lonely occupation and sharing that love with others and hearing their message helps me to feel lighter!

P.S. Over the last 15 or so years, being in 20 or so operas; many of the people at the opera house have become acquaintances, friends, and family at various levels. I appreciate and value them. I keep up with many of them via Facebook. I haven't been able to be in any operas for three or four years as I could not leave Gregory alone but now that he is safely ensconced at The Lieberman Center, I hope to get cast in an opera this season, or maybe next.

Facebook Responses

From time to time I will post responses that I received to my various update e-mails on Gregory's decline which eventually led to his needing to be at a memory care facility.

While many of them are a tribute to me (felt good, thanks) I am sharing them more for those of you out there who are deeply involved yourself in loving someone with dementia. 

Gregory and I have so many loving friends and family members that I felt it my responsibility to keep everyone up to date on his "progress." Also, when people would visit us, they would know what to expect and how to behave.

Not being in frequent contact with many of our family and friends and with many being spread out all across the country, I felt e-mail and periodically Facebook was a good way to do so.

The comments were pleasantly unexpected. The support welcome.

These were responses from Facebook, which by the nature of Facebook are brief, "clicks" comments:

So sorry to hear this. K filled us in on this and we feel sad for you, but know this is for the best for both of you. We think of you often and wish you the best.

Love you both

Thoughts to you

I can't "like" this. Sorry to hear this. We are thinking of you both. XOXOX

Wow!! Big hugs to you Michael!!!! You are and have been the best/strongest/most loving advocate I know!! God Bless you and Greg!!! 

My heart is with you Michael, a very tough decision, but probably the best for Greg. Luv to you both.

Sending you a hug. Listen to yourself, do not question your actions. You know what is best right now. That is what unconditional love is about. Making the decision to put my Mother in a care facility was tough but the best thing for her and for me.

Thoughts and prayers are with you both.

Thinking of both of you at this difficult time. Very tough decision but a good one for both of you. My prayers are with you.

My thoughts and prayers are with you both during this difficult time.

Thinking of you both.

It is such a hard decision but the health of both of you is important.... glad that you are both where you need to be at this time....sending you much love and support.

Sorry to hear that news, glad that you are able to make the best of it. My thoughts are with you both.

Thoughts and prayers are with you. Good decision in deed!

What a tremendously hard decision to work thru. I wish you both the best.

Hugs to you.

Sending lots of love your way, what a difficult decision to have to make for the person you love more than yourself. My heart goes out to you both.

You have done everything you could possibly do.

Sending you both much love, beautiful Michael.

My heart is with you both. So much I want to say to you...I think you know how much I adore and admire you, and how brave this move was. Hang in there!!!!

I am so sorry to hear this. I wish the best for both of you You both are in my thoughts.

I'm sure this was hard for you, but you made the right decision. Thanks for all of the updates. Love reading your blog.

So sorry to hear this, Michael. I wish you and Gregory all the best through this very difficult time.

You're both in my prayers.

What a difficult decision for you Michael. So sorry to hear of this - keeping both of you in my prayers.

Sending you lots of love, energy and piece. Praying for you both! You are not alone! Xoxoxo

Holding you both close!

Wow Michael, what a brave and beautiful thing…

Sending good thoughts & prayers for you both

Thanks for your openness always

Prayers & positive thoughts for you both!

Thinking of you both, Michael.

 U R amazing

I am so sorry Michael. I know how hard this must be for you. My prayers go out to both of you.

 Thinking of you…both.

Sending oodles of love. Will call to work out a visit.

Love you very much

Michael, I can't bring myself to post on FB my feelings about your latest post. Please know that my heartfelt thoughts are with both you and Gregory. I embrace you with love, dear one.

 A brave and loving decision. Peace to you both. xxoo

All my love and support to you. Please know that you have many hearts and prayers on both your behalf's on this long journey.

My heart included.

 You both are fantastic... My thoughts are with you.

All my love to you both!

Wishing you strength for your journey.