Dear Blog Readers

Over the life of this blog since June 2010, the number of readers has been growing exponentially. I just wanted to take the time to say THANK YOU and to say that I hope by joining our journey (often or periodically) and that hearing about Gregory and my experiences are able to support you on your journey. I hope that they help you to realize that YOU ARE NOT ALONE, whatever your sorrows and joys may be.

In many ways the fact that Gregory and I are a same sex couple seems to disappear as you realize that ours is a story of two people in love, family friends or whomever, who care for each other and have been journeying through Dementia/ Alzheimer's on what often seems like a run-away roller-coaster ride, "The Three R's."

Having said that, however, I also need to say that in my research on the internet I find that there is very little, if nothing, out there dealing with GLBTQ couples who are dealing with the issue of living with Dementia/ Alzheimer's or loving someone who is living with it. That makes me sad and seems to make my work at blogging all the more important.

Finally, I would ask you to share the blog's address with anyone and everyone who you think might benefit from Gregory and my journey and to comment now and then if only to say, "Hi. We are out here!"

Thanks and Namaste,
Michael and Gregory

Growing Strong

59,000 hits - 1192 posts

Growing

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.

Shoulders

I have been developing a number of "sound bites" to use when people ask me about Gregory and how he is doing and how I am doing. One one hand I could tell long stories about the joys and sorrows of his current condition. And I probably have told them each often! 

So I have decided that less is more and that once the story has been told here on my BLOG I do not need to keep telling it, let alone reliving it. I think this is probably a good thing: Think More, Talk Less.

SOUNDBITES:

Gregory is fine, he's good. (Enough said?)

He is even and that is good.

He is happy, contented, and safe.

Gregory is no where near the man we used to know, but his spirit and soul are still very much in tact.

His CONDITION is much worse but his SITUATION is much better!

My heart is light knowing that Gregory is being well taken care of at Lieberman.

We have much for which to be grateful!

We are blessed. The Universe continues to line up behind us.

I will always carry Grief on one shoulder but have Joy and Comfort on the other.

Congratulations

michael a. horvich cares about alzheimer's disease
began June 30, 2010
825 posts
31,000 hits

Accomplishemnts

Pleased to announce that as of today, this BLOG has received 30,000 hits! Actually 30, 036.

As Gregory and my journey with Alzheimer's continues I am pleased that you sign in now and then (or a lot) and are riding along.

I hope that I have been able to keep you up to date on our journey as well as to support you in similar journeys of your own.

While most are invisible to the eye, we all do have our journeys, don't we?

For me, writing has been such a support in helping me cope with difficult times, processing my emotions, feeling that I am not alone, and has helped give me the strength to carry on.

Love does the same and so many of you have sent so much love Gregory and my way, I am grateful!

I am excited about the release of a second book of poetry, much of it driven by this Alzheimer's Journey. It will be carried by lulu.com, amazon.com, and barnesandnobel.com. I will let you know when it is available.

BLOG

This BLOG began in June of 2010. We (you and I) have been through and shared so much in that time. Pleased to announce that we just passed 29,000 hits since the beginning of "michael a. horvich cares about alzheimer's."

Phone Conversation with MA

Had a lovely conversation this morning with a friend. We share, in common, loving and caring for someone with Alzheimer's. She has been following this BLOG and wanted permission to share it with people in her support group.

I appreciated her wanting to make sure she respected Gregory and my privacy by asking and I assured her that the BLOG (while open, honest, sometimes raw, and sometimes humorous) was not at all private but meant for anyone who wants to keep tabs on how Gregory and I are doing as well as for anyone who could benefit in whatever way on their own Journey.

So I wanted to post here, and will add to the masthead of the BLOG:

This BLOG is dedicated to Gregory, not a victim of Alzheimer's but a hero. It is meant to share our Journey with family and friends who seek to know more about us as we deal with this insidious disease or those who can take away something from our experiences while traveling their own path in loving and caring for someone with Alzheimer's Disease. Please feel free to share the link with anyone and everyone who you think might benefit.

Milestone

Pleased to announce that this BLOG has just gone over 20,000 hits since its inception in June 2010. Thanks for helping.

A Call To Spread The Word

Dear Reader,

My "michael a. horvich cares about alzheimer's" BLOG just reached 18,000 hits since it began in July 2010.

It pleases me that so many family, friends, and visitors to the site have been able to keep up on Gregory's journey as I walk the path with him and perhaps been helped with similar journeys of their own. 

The fact that we are a same sex couple facing this disease is important but after that it disappears and our story is much like anyone else facing a dementia devastating disease.

Please help me reach more people who might benefit from my writing by sharing with your family and friends. Wow, if this could go viral I would love it.

I am about to publish a second volume of poetry, the first can be purchased on AMAZON.

Also, I am currently working on Gregory and my memoirs. It is called: "GYROSCOPE: An Alzheimer's Love Story." If you have any publishing connections I would appreciate any leads. 

Fondly,
Michael

Going, Going, Gone

Maybe I should just keep record on a separate piece of paper instead of posting it to my BLOG but this way I can: 1) process, 2) share, 3) record, 4) maintain, 5) save, 6) cry.

SO FAR THIS MORNING: Gregory could not take simple directions on how to get his shaver to stop squeaking (at least he did figure out how to plug it in) so he had to wait until I finished my use of the bathroom (read taking a dump) to help him. We are not shy so use the bathroom together. It actually gives me the opportunity to monitor him without seeming like spying. But even my private moments have become his.

Next I had to remind him to put on deodorant and face cream. He could not find them so I opened the medicine chest and pointed. He was able to put the correct product on the correct area of his anatomy so I guess I should be grateful.

Then he put on his underwear (I missed noting if they were right side or backwards but guess that doesn't really matter) and sweats without my help. Fist time this week! So I guess I should be grateful. Doesn't necessarily mean anything for tomorrow.

As he was leaving the bedroom I mentioned, "Your paper is on your desk." 

He headed towards the front door. I called him back and said, "Your (corrected the word) NEWSpaper is on your DESK." 

He headed toward the front door again. "On your desk." "WHERE YOUR NEWSPAPER IS EVERY MORNING! Do you know where your DESK is?" 

"Yes, out there."

"Yes, out there," I reinforced.

Then the numbness, and tears, and confusion, and not knowing how to "fix" this type of interaction, and the fear of the future, and depression (and only a tiny bit of anger) follow. 

Then the processing for the BLOG begins. Luckily I had made my first cup of coffee before all this began.

Simultaneously through all this Emma, my kitty (GiGi is Gregory's kitty,) brings me her Krinkle Ball so we can play fetch. A little bit of unqualified love from my kitty and processing from my BLOG make me feel a little better. 

Perhaps making some signs for important places that Gregory does not seem to be able to make associations between the word and the place would help? Don't feel really optimistic about this but I will try. 

Perhaps I need to make sure that I do not begin to meet my own needs (like taking a dump) until Gregory is finished with all of his and settled. Problem being that often when I think he is settled, a new aspect of getting settled doesn't work for him. But I will try.

At least I was not mean to him. I think I appeared patient on the outside but even feel guilty about what was going on inside, isn't that silly? I will try.

Last night we watched "Call for the Midwives" on PBS, a British program about post WWII and a group of midwives and nuns in England. Excellent second season. 

A baby is born with Spina Biffida. Medical know how will make the baby's life as comfortable as possible but one of the nuns talked about the early days when the best thing to do for the baby was to help it die comfortably. Even in the church, that was acceptable. 

After trying to help the parents but failing to help them deal the diagnosis, the head nun tells the grieving midwife, "Sometimes one has to admit defeat and move on. There is a lot more of life that needs to be lived."

I identify.

Today, this came across my mail: 

Shambhala Publications

SUPPORTING CONDUCT

With regard to one’s behavior, one must relinquish all the limitations implied in subject-object duality (gzung ’dzin gyi la dor ba). One should abandon all ordinary ways of assessing outer and inner phenomena, and the engagement or withdrawal of the mind with regard to “good” and “bad.” One must not, through mindless clinging to sense objects, stray into the five ordinary mental poisons. For when approached with skillful means, all are but the display of the great and perfect equality.

—Jigme Lingpa, from Treasury of Precious Qualities: Book TWO!

So does that mean that what I am experiencing is neither good nor bad? It only is? Is what I am going through bringing me closer to achieving great and perfect equality? And if all of this is true, how am I going to get through this journey to the end? Time will tell, but I will try.

Meanwhile, this is a list I have been keeping for a while.

GOING GOING GONE

Taking pills - comes and goes.
Putting a belt on - usually gone.
Using mouth wash - gone.
Word bathroom - gone.
Understanding most words - almost gone.
Using most words - almost gone.
Brushing teeth - comes and goes
Reading at bedtime - almost gone.
Going for a walk by himself - gone.
Picking out his own clothes - gone.
Getting ready for bed - comes and goes.
Shaving in the morning - comes and goes.
Getting dressed - comes and goes.
Toileting - comes and goes.
Communicating with words - gone.
Using a fork and knife - comes and goes.
Navigating the food on a dinner plate - comes and goes.
Fastening his seatbelt in the car - comes and goes.
Using a urinal when out - comes and goes.
Controlling flatulence - comes and goes.
Comprehension of TV - uncertain.
Helping make the bed - comes and goes.