Kate, my friend in Australia who is a great advocate for people diagnosed with Dementia/ Alzheimer's and who herself has that diagnosis, in a recent blog discusses care homes. In previous posts she talks about the unfairness of how so many people in care for Dementia are treated, especially without regard for their desires, rights, etc. And I agree with her very much. She posted the following to soften her "attack" on caregiver's and also describes the wonderful "Group Homes" she visited in Australia. Here are my comments to her post:

Kate, Your description of "Group Homes" sounds wonderful. I know that there is a movement afoot to move from a "Hospital/Medical Model" of care for Dementia Residents to a "Home/Family Model" and I truly embrace that move.

I also appreciated your "apology" to support facilities and caregivers who certainly are trying their best to provide loving, empathetic care for their spouses and family members, although not always under the best of circumstances.

Sometimes, one must settle for the lesser evils! However, I believe that even in a "Hospital Model" facility, the care can be much more "Home Model" like. Also, the details of what might go on at any facility is often dictated by the stage of care that the residents might be at but that doesn't mean they should have to "settle for less" than humane, best practices! 

I know that at Gregory's facility, many if not most of the residents on his floor are not able to be as active and "family" oriented as we would hope, but the care and the ambience of the place certainly can be better. The health care, medical services are amazingly excellent, especially with residents who can not share their needs, discomforts, pains, and illness symptoms. The social/emotional environment, however can bemuch better.

My continuing quest is to share my observations, having been with Gregory almost every day, with the administration, managers, doctors, and department heads, etc. I am excited and pleased that they are eager to hear my feedback and we have scheduled a lunch meeting (I'll bring the food) in which I can share my observations and suggestions with everyone at one time and then open it to Q and A.

Instead of giving compliments, observations, blames, suggestions for improvement, etc ... I plan on creating a "fantasy story" of what the ideal Memory Care Unit could look like based on the Lieberman Center's physical plant parameters and based on their target population of residents. Wish me luck. I will be sharing the story on my BLOG in the not too distant future.

Thank you Kate, for helping me to continue to educate myself in the areas of: 1) care-giving, 2) appropriate language use when discussing Dementia/ Alzheimer's, 3) seeking feedback from people diagnosed with Dementia on how they would like to cared for, 4) appropriate (if any) use of psychotropic drugs, 5) living beyond the diagnosis and living well with the diagnosis of Dementia/ Alzheimer's, 6) and I am sure etc, etc etc!


http://kateswaffer.com/2015/11/01/safety-vs-autonomy-in-residential-care/

http://kateswaffer.com/2015/11/02/open-letter-to-group-homes-australia/

Dark Night of the Soul

For me, this "Dark Night of the Soul" has to do with my finding my way, my identify, my life without Gregory being by my side. Gregory and I have never in our fourty+ year relationship merged identities. We have always grown together as well as on parallel tracks. So in many way we both have been independent as well as dependent. But this has changed, for at least 11+ years now and for sure during the last 17 months while he has been at The Lieberman Center.

He is still with me but in a greatly reduced way, in a way that I must create anew in order to be able to see and enjoy. While we are still "a couple," we do not do most things together, do not share intimate moments, do not plan or make decisions together, do not vacation together, do not laugh together while watching a TV show, do not share a meal or a bowl of popcorn, do not float on the notes of a musical piece by Chopin, do not anticipate our future.

He finds comfort in my just being there and I do in his but it is a different kind of comfort. I have no one who I can really "find a shoulder to cry on" or to share my grief, my joys, my continued hopes, my aspirations and ambitions.

So slowly I am discovering who I am and who I will be during this next phase of my life. I will survive this and the light will slowly increase in brightness. I am sure I will go through other "Dark Nights of the Soul" as Gregory continues to disappear and eventually when he dies.

Life if joyous, bright, meaningful, exciting, stimulating. Painful!

www.dailyom.com

May 20, 2015 Dark Night of the Soul Surrendering the Egoby Madisyn Taylor While we are in a dark night of the soul experience, hold steady knowing the light will appear once again. Whenever a word is overused, it is most likely being misused, and over time, it begins to lose its meaningfulness. For example, we often refer to a fleeting feeling of depression or a period of confusion, as a dark night of the soul, but neither of these things qualifies as such. A dark night of the soul is a very specific experience that some people encounter on their spiritual journeys. There are people who never encounter a dark night of the soul, but others must endure this as part of the process of breaking through to the dawn of higher consciousness. The dark night of the soul invites us to fully recognize the confines of our egos’ identity. We may feel as if we are trapped in a prison that affords us no access to light or the outside. We are coming from a place of higher knowing, and we may have spent a lot of time and energy reaching toward the light of higher consciousness. This is why the dark night has such a quality of despair: We are suddenly shut off from what we thought we had realized and the emotional pain is very real. We may even begin to feel that it was all an illusion and that we are lost forever in this darkness. The more we struggle, the darker things get, until finally we surrender to our not knowing what to do, how to think, where to turn. It is from this place of losing our sense of ourselves as in control that the ego begins to crack or soften and the possibility of light entering becomes real. Some of us will have to endure this process only once in our lives, while others may have to go through it many times. The great revelation of the dark night is the releasing of our old, false identity. We finally give up believing in this false self and thus become capable of owning and embracing the light.

Compassion

Gregory, since almost the beginning of his journey with Alzheimer's, has had this quote posted on his bedside nightstand (it is still there and notice I have kept my misspelled COMPASSION.) The quote is one of the first things I framed and hung on the wall next to Gregory's bed at Lieberman. We review it together often and hopefully it has been an inspiration as well to the Lieberman Staff.

My posts over the time since he as been at Lieberman have talked about the joy and love that I receive from so many of the residents who are now part of Gregory's "family." Today is Entertainment Sunday when I get to see many of our Fifth Floor Family but also many of the residents on other floors with whom I have become friendly. Sure enough, this horoscope speaks loudly to what I experience when I am with Gregory and our new Family.

February 22, 2015 Compassion by Feeling Aries Daily HoroscopeFeelings of profound empathy can touch you deeply today, inspiring you to take action in the ongoing, worldwide fight against suffering. As you see the scope of pain that afflicts those who are less fortunate than yourself, your ability to understand these individuals’ emotional challenges can help you direct your charitable efforts toward those causes that can benefit most from your aid. You may feel a strong sense of camaraderie while interacting with those on the receiving end of your love and support today. If you remember that your circumstances are blessings that you have been given, you will likely feel no hesitation as you share your resources, time, and talents with others. It is a simple matter to integrate compassionate action into our everyday lives when we make an effort to understand how anguish and need impact the lives of those less fortunate than ourselves. When we choose to expose ourselves to the full impact of poverty and pain, we begin to understand the profound effects these disadvantages have on those who labor under them. We feel not only the pangs of our own compassion, but also the intense emotions experienced by these less fortunate individuals. This empathy becomes the catalyst that compels us to put aside our own cares in order to focus on charitable, loving endeavors that will eventually improve the lot of people who need our help. Your understanding of the challenges that others face will inspire you to take action against the plight of those who suffer today.  For more information visit dailyom.com This article is printed from DailyOM - Inspirational thoughts for a happy, healthy and fulfilling day. Register for free at www.dailyom.com

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Music & Alzheimer's

This came across my facebook page: God's Love: Naomi Feil, a Jewish woman, sings Christian hymns for Gladys, who has Alzheimer's and was unable to speak. Watch what happens at the end, when Mrs. Feil opens her heart and gives Ms. Gladys what she needs so deeply.

CLICK HERE FOR VIDEO: Music & Alzheimer's

Gregory Maire: Studies in Color and Form: Part One The Success

On December 4, Gregory had an art show at The Lieberman Center. I will write about the opening reception in this and the next blog post. The first one took place at 2:00 for residents and was a great success. The second one took place at 6:00 for family and friends and it was a great failure ... but with a surprising twist.

If the first paragraph doesn't have you eagerly coming back to find out what happened, I don't have a good grasp on understanding the literary vehicle called the "Cliff Hanger." 

On a previous post I shared photos of the first floor area where the show took place. It looked great. Refreshments consisted of cheese, cracker, fruit platters, and apple juice all served in an adjoining room. In the excitement of the event, I did not remember to take any photos of the food which was beautifully catered by the Lieberman Kitchen.

Approximately fifty to seventy five people attended including residents from all floors, many residents from Gregory's floor, family members of residents, and staff. The Lieberman Life Enrichment Department ran the show helping residents get down to the first floor, partake of the refreshments, and above all see Gregory's paintings.

Since the event took place at "shift change," many of Gregory's nurses and resident care assistants (RCAs) were able to drop by, say hello, grab some food, and learn a little more about the talented man they help every day. Many of Lieberman's executives, directors, and coordinators etc dropped by briefly to say hello.

Every one got a "Free Post Card Souvenir" of the show and seemed pleased to have a little "take-away" to keep on their nightstand or desk or bulletin board. As I passed them out I used the above phrase so people would understand what they were getting and that the gift would not cost anything.

Music was playing in the background. People were moving around slowly viewing the paintings (by push kicking their wheel chair, being pushed in their chair by a helper, or walking on someone's arm) Visitors were enjoying the cheese, crackers, and fruit. Jan, a volunteer, documented the event taking photos. When I receive them, I will share the ones she took of Gregory, Mannny, and me but will not be able to show you the wonderful, happy, engaged, energized crowd due to privacy rules.

At one point our photographer organized a large group of people consisting of Gregory's "Community/Family" into a semicircle consisting of G at the center, Manny, me, six or seven staff members, and approximately a dozen of Gregory's "Floor Mates." Again, such joy was being shared by all.

Gregory, while still acclimating to his new medications, was fairly present and seemed to enjoy the all the attention he received. Several residents from other floors wanted to take a picture with him. Many compliments were given at how beautiful, colorful, etc his paintings were.

In the refreshment room, I welcomed everyone and thanked them for coming on Gregory's behalf and orchestrated a round of applause for him. His face showed a smile and he knew that the attention was directed at him.

There was a wonderful energy throughout the entire area and entire event which I have not seen in such proportions previously. Sometimes at a Sunday Afternoon Concert I have felt it but maybe because this was in honor of my Gregory, it felt stronger to me.

I think that all of the residents felt good at being included in this celebration, happy at knowing Gregory, and excited by the novelty afforded them on this Thursday afternoon.

I am so grateful to the Life Enrichment Department (including Andrea, Wanda, and Katherine, and Leslie) to Gregory's Social Worker (Hannah,) to the head nurse on Gregory's floor (Alicia,) to Gregory's Activities Director (Alma,) to the Lieberman Kitchen Staff, to our Photographer (Jan,) to Lieberman's Volunteer Coordinator (Debra,) to Gregory's Helper (Manny,) and to others which I have inadvertently failed to mention who helped provide this experience to celebrate Gregory.

Finally, I am grateful to everyone at Lieberman who makes this community a safe, happy, comfortable, enriching place for not only Gregory but for so many people to live the rest of their lives being well taken care of with dignity and respect and love.

Today at Lieberman

Today, I got to Lieberman by 1:00. Gregory was happy to see me and seemed able to focus pretty quickly on my presence. He asked a question I haven't heard in several weeks, "Where have you been?" My stock reply, "Shopping." He laughed. I laughed.

I sent Manny on a "break" so Gregory and I could be alone. Very often we just make "nice/nice" or sing or sit and watch South Pacific, the musical. Often I get there by mealtime and I sit with Manny or Alaksh and help Gregory with his lunch or dinner. Sometimes, if I am the only one there on that day, I will take turns feeding him and helping him feed himself.

I pulled his wheel chair as close to me, head on, as I could. "Can we talk?" I asked. "I love you so much and really miss you. You mean so much to me and I want you to know that I am here for you, to help you and to take care of you. I know that we both didn't expect it to be like this but this is our life now. I wish I could make it all better but we both know I cannot.

I hope you are happy here and know that everyone likes you and is taking good care of you. I am happy. I want you to know that. I hope you are happy too. The money is OK so we don't have to worry about that. Now that you are OKed for Medicaid, all of this help is free, we don't have to pay a penny. (Actually his Social Security money goes to support, in part, the Lieberman fees.)

I know you have forgiven me for the times when I was mean or angry. I know it wasn't your fault but I am just human. You have been a trooper through all of this and have been so accepting and loving.

I am not sure if you understand everything I am saying but I wanted to say it. You don't have to say anything to me because I can see all your love for me in your eyes. In your and my tears. It is OK for us to cry together. Then we can be happy again. Or maybe the tears are of happiness. Tears of love.

You are my love. You are my boyfriend. Your are my best friend. I love you so."

At this point I offered Gregory a tissue. I had been wiping both of our tears but now he put it to his nose and blew. Still knows how to do that. We held hands the entire time.

At one point I got on my knees in front of the wheel chair and laid my head in his lap. He put his hand on my head and patted me. It was not easy for him to control his muscles but he did it and we both felt good. I kissed him all over his face and sang, "Soft Kitty, Warm Kitty, Little Ball of Fur. Happy Kitty. Sleep Kitty. Purr. Purr. Purr."

This is the song that Dr. Sheldon Cooper's (from the TV series Big Bang Theory) mother used to sing to him when he was sick. It has become Gregory and my theme song. Often I will tip his chair back, put a pillow under his head, and sing him into a nap. Which I did after our talk. I also put a blanket over him because blankets are warming and comforting when taking a nap, even when you have Alzheimer's and even when you are in a wheel chair.

It was a good afternoon.

A Visit With Gertrude

While I was observing Gregory in Physical Therapy, I had a chat with Gertrude who was waiting to use the bicycle petals after Gregory. Turns out she is 100 years old, which was confirmed when I looked at the PT associate bemusedly for confirmation.

Margaret was at least as alert as you and I, well groomed, friendly and chatty. He husband had died some twelve years previously with an added, "I miss him but what can you do when you continue to wake up every morning."

She commented on what a handsome gentleman Gregory is and while empathetic did not feel the need to go on about how young to have Alzheimer's. "So sorry for both of you. It is what it is, I guess," she said warmly.

I told her we have been "partners" for over 39 years (still searching for the best descriptor since I am uncomfortable with "husband" because it implies sex types and roles. We are not husband and wife.)

She lit up and shared that she had her husband for some 75 years. We commiserated how difficult it is loosing the one you love (her's quickly, mine over the last ten years.)

Maybe it is because I came out Gay during the 1950's, and have lived a large part of my life through a time when being Gay was wrong, a sin, looked down on, punished, shunned, minimally - not recognized, etc; that I am still amazed when being Gay and having a life mate is taken as a mute issue.

The love of 39 years is what is recognized. My sacrifices is what is recognized. Our love for each other is what is recognized. My role in making all medical and health and life decisions for Gregory, as his husband - mate - lover - life partner - wife - soul mate - etc, is what is recognized and respected by family, friends, and everyone we have come in contact with at The Lieberman Center.

It was so refreshing and wonderful and life reaffirming to chat with Gertrude.

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.

Did You Hear The One About...

C

Good chatting with you this morning. Look forward to seeing you at C and J's party if not sooner.

I don't mean to be evasive when someone asks, "How are things going? How is Gregory doing?" 

I usually refer people to my blog because that is the way, if they choose, they can keep up with how we are doing. It is difficult to summarize each time someone asks, it is difficult to surround myself with those vibrations over and over ... so it is easier to say, "Hey check out the BLOG!" 

I know people are busy and do not want to be in front of their computer any more than necessary, also I understand that people have their own difficulties and don't necessarily want to live mine. But really, the best way to keep tabs on us is to now and then check into http://mhorvichcares.blogspot.com.

A recently revealing one is: http://mhorvichcares.blogspot.com/2013/08/overwhelmed-through-my-tears.html

Love ya,

M

P.S. You might even see a really good BLOG entry that features an e-mail that was originally written to you. Love you guys lots!

Experiences

We don't discuss our experiences anymore
We just share them.