PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Sunday, May 31, 2015

South Pacific

So for those of you who are still waiting for my dissertation "Who is Gregory" it will be a few more days until completed. But meanwhile enjoy these videos of Gregory and his singing and his emotions as he watches and enjoys watching the DVD of South Pacific.

Saturday, May 30, 2015

101 Activities Dementia Care Partners Can Do Together

These came fro Amazing Susan  and she downloaded from the web site linked below. I thought it would be an interesting idea to see how many of them are NOT possible for me to do with Gregory, this after my previous blog and meeting with the Lieberman "go to" neurologist with the question, "Who is Gregory at this point in time?"

If you’re at a loss for things to do with your dementia care partner, don’t worry – there are lots of ideas on this list. In my experience, the most important thing is to be open-minded. Be curious. Be childlike. Remember how exciting discovery and exploration can be. See magic and possibility instead of tragedy and limitations.

Almost ANYTHING can lead to engaging life when you are present in the moment. Open your eyes and your heart to really being in a space that brings you both pleasure. Your dementia care partner can take you back to old places and fond memories as well as to new places you never dreamed existed. Open the door to their world and step through the threshold together.

The activities you choose to engage in will depend on many factors including the capacities of whoever is involved, the mood of the moment, personal preferences, physical considerations, the environment, available resources, etc. This is a list of “starter ideas” to spark your imagination and creativity. I downloaded the original from

I may create additional lists with my own ideas and those of others, so please feel free to send your activities and ideas to

• • • • •

Can do in boldface.
Cannot do.
Can do with help.
I can do for him.

101 Activities Dementia Care Partners Can Do Together

1 Listen to music
2 Toss a ball
3 Color pictures
4 Make homemade lemonade
5 Count trading cards
6 Clip coupons
7 Sort poker chips
8 Read out loud chapters from Harry Potter books or other favorite stories 
9 Rake leaves
10 String beads
11 Bake cookies
12 Take photos of the person and you and create a collage
13 Brush or comb one another’s hair 

14 Participate in the Alzheimer’s Association Walk to End Alzheimer's. 
15 Plant seeds indoors or outdoors
16 Look at family photographs
17 Wipe off the kitchen table
18 Weed the flowerbed or tend to the garden
19 Fold laundry
20 Have a friend visit with a well-behaved pet
21 Cut pictures out of greeting cards or magazines
22 Play dominoes
23 Ask the person about his or her favorite childhood books or cartoon characters (you can share yours too)
24 Bake homemade bread
Sort objects by shape or color
26 Sing old songs
27 Invite the person to tell you more when he or she talks about a memory
28 Put silverware away
Make a Valentine card
30 Play favorite songs and sing
31 Ask the person about his or her brothers or sisters
32 Make a cherry pie
33 Play with tops or jacks
Make a scrapbook
35 Take a walk around the yard
36 Write a poem together
37 Reminisce about the first day of school
String Cheerios® to hang outside for birds
39 Make a fresh fruit salad
40 Sweep the patio
41 Color paper shamrocks green
42 Fold towels
43 Have an afternoon tea party
44 Talk about great inventions
45 Look through the pages of a clothes catalog
46 Look at a map and identify countries
47 Make a family tree poster
48 Color a picture of your country’s flag
49 Eat a picnic lunch outside
50 Water house plants
51 Play horseshoes
52 Dance
53 Watch Sesame Street together
54 Make homemade ice cream
55 Make holiday cards
56 Reminisce about favorite sports activities the person enjoyed while growing up
57 Write a letter to a friend or family member
58 Dress in your favorite sports’ teams’ colors
59 Pop popcorn
Name the presidents / prime ministers / kings and queens
61 Give a manicure
62 Make paper butterflies
63 Plant a tree
64 Finish famous sayings

65 Feed the ducks
66 Model with play dough
67 Look at pictures in a comic book
68 Put a puzzle together
Sand wood
70 Rub in hand lotion
71 Arrange fresh flowers
72 Remember famous people
73 Recite nursery rhymes
74 Make peanut butter sandwiches
75 Cut up used paper for scratch paper
76 Blow bubbles
77 Take care of a fish tank
78 Bake cupcakes and decorate them
79 Interview the person about his or her life with a video camera or audio recorder
80 Play Hangman
81 Finger paint
82 Cut out pictures from magazines
83 Put coins in a jar
84 Put bird seed out for the birds
85 Decorate a pumpkin
86 Reminisce about a favorite summer
87 Roll yarn into a ball
88 Trace and cut out autumn leaves
89 Cook a favorite family recipe together
90 Gather a yellow sponge, crayons, paper and tape and make a SpongeBob Square Pants 91
Wash silverware
92 Give him or her a hug
93 Ask the person to show you how to knit or sew (or another favorite hobby)
Make a picture frame out of popsicle sticks and glitter
95 Play a musical instrument
96 Keep a journal together
97 Ask the person to talk about his or her favorite sports hero
98 Sort playing cards
99 Ask the person about his or her favorite pet
100 Wash windows together
101 Ask the person about his or her first car

Now for my list of things Gregory and I are still able to do, many of them with my help:

 1. Listen to music in his room.
 2. Listen to music with headphones on.
 3. Watch the "cooking channel" on TV.
 4. Watch DVDs especially ones that are colorful, active, and musical, like "South Pacific."
 5. Sit outside in the sun.
 6. Sit in the "Great Room/Library" on the first floor.
 7. Look at pictures in the family album.
 8. Sing together.
 9. Make silly noises.
10. Tell him I love him.
11. Hold hands and be quiet together.
12. Push his wheelchair through the wings on his floor.
13. Go down to the community room for entertainment events.
14. Keep him hydrated.
15. Feed him snacks like yogurt, apple sauce, fruit, cookies, dark chocolate, pretzel rods. 
16. Visit during lunch and/or dinner.
17. Bake special treats at home for him and bring them in to share together.
18. Read aloud.
19. Pump up the music real loud and play "rhythm band" with the instruments I brought in.
20. Put him through his body movement exercises.
21. Tell stories of the "olden days."
22. Stroke his arm or leg.
23. Give him a manicure.
24. Apply lotion to his hands, arms, and legs.
25. Give him a shave.
26. Wash his face with a hot cloth.
27. Talk to him as I water the plants in his room.
28. Visit with other residents (him sitting and listening.)
29. Tickling him.
30. Bumping heads and saying "Boink."
31. Kissing him.
32. Hugging him.
33. Telling him how important he is to me.
34. Tellingham he is handsome.
35. Stroking his face.
36. Combing his hair.
37. Slowing down for now. Might think of a few more items but think I have it pretty well covered.

Thursday, May 28, 2015

Strong Emotions

Interesting when you come across others you respect who put into words what you seem to automatically know and practice!

May 27, 2015
When you touch a hot stove, as soon as you become aware of the pain, you immediately pull your hand away. You don’t let it rest on the burner in order to explore the pain. In the same way, we stay present with strong emotion only very briefly at first. The instruction is: short moments again and again. Rather than trying to endure prolonged exposure to intense feeling, we touch in for only two or three seconds, then pause and breathe gently before touching in again. Or we might simply stay with the troubling feeling for five or six minutes and then go on with our day, more in touch with our emotions and, therefore, less likely to be dragged around by them. 

Decisions, Decisions, Decisions

Things have been going smoothly for a while so I should not complain or get upset when we hit yet another bump in the road. Gregory has been very alert, engaged, talkative (although mumblish,) happy, whistling, singing, laughing, eating well, generally enjoying himself.

But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.

So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?

Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.

There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)

But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.

I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.

So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.

Have I rambled enough? Maybe this will help me get some sleep tonight!


Sunshine and Smiling

Gregory is happy when he can get outside and soak up the sunshine!


Gregory still has some low level skills available and Manny and I continue to try to cultivate their use. Gregory isn't always consistent in using the skills but they do appear now and then. For example he was able to feed himself half a dozen blue berries and even say, "Yum," but the skill did not continue as I had hoped until all the berries were gone. Don't know if he looses focus, or gets tired of "performing," or just forgets what he is doing? But we try what we try and we are grateful when he succeeds.

He can feed himself a pretzel stick and finishes it most of the time. Sometimes he drops it and sometimes he forgets it's there, but for the most part he is "Pretzel Stick Literate!"

More often than not Manny or I help Gregory keep himself hydrated but he can once and a while list the glass to his lips and take a long drink of cold water.

Tuesday, May 26, 2015

A Home

This poem from To Bless the Space Between Us by John O'Donahue, 2008,  has a poem that captures almost in detail, the concept of home Gregory and I have created for each other over the last 40 years. It wasn't always this perfect, but it got there pretty quickly in our relationship.

Now that Gregory does not live in the home we created, I am sad but realize that the beautiful home we created together still exists for me and in us!

Blessing For a For A New Home

May this house shelter your life.
When you come in home here,
May all the weight of the world
Fall from your shoulders.

May your heart be tranquil here,
Blessed by peace the world cannot give.

May this home be a lucky place,
Where the graces your life desires
Always find the pathway to your door.

May nothing destructive
Ever cross your threshold.

May this be a safe place
Full of understanding and acceptance,
Where you can be as your are,
Without the need of any mask
Of pretense or image.

May this home be a place of discovery,
Where the possibilities that sleep
In the clay of your soul can emerge
To deepen and refine your vision
For all that is yet to come to birth.

May it be a house of courage,
Where healing and growth are loved
Where dignity and forgiveness prevail;
A home where patience of spirit is prized,
And the sight of the destination is never lost
Though the journey be difficult and slow.
May there be great delight around this hearth.
May it be a house of welcome
For the broken and diminished.

May you have the eyes to see
That no visitor arrives without a gift
And no guest leaves without a blessing.

Picking Berries

I was able to get a tray for Gregory's wheelchair. It is fairly large and slips over the handles of the chair which holds it firmly in place. I thought it would be a good idea to provide a surface that Gregory could "work" on since it is difficult to get the chair close to a table. We could put toys, food, books, etc on the table for him to use.

When I first put the tray onto the chair, I thought "Oh Fuck! It looks like a highchair!" So I took it off and put it away.

Today I put it on again and while it still looked "Oh Fuck!" I decided that it still may come in handy. The first experiment was to put a plate of blueberries on the tray and try to help Gregory feed himself. I don't think he got the idea but when I moved his fingers around he did grasp a berry and with physical encouragement he  put it into his mouth. His response was, "Oh Yum!"

He was able to feed himself half a dozen or so berries but what I have found is that just because he succeeds in doing something, that does not mean he can do it in a repetitive fashion. He fumbled and dropped or just let his hand lie there. So sometimes he succeeded and other times I did it for him.

The experiment will continue and I'll send a photo of the tray on the chair, "Oh Fuck!"

Whistling Dixie

As Manny would say, "Wa Wa Weeeee!"

Monday, May 25, 2015

Life, Death, and a Slow Disappearance

A dear friend Stephanie Kallos shared this on her Facebook page. She is author of three wonderful fiction novels: Sing Them Home and Broken For You and the soon to be released Language Arts. I highly recommend them if you are looking for some warming, engaging, intriguing reading.

This page was written by Henry Scott Holland (27 January 1847 – 17 March 1918,)  Regius Professor of Divinity at the University of Oxford, It really spoke to me in ways you could substitute the word Death for Alzheimer's and the ideas would still work so well. They did for me.

Saturday, May 23, 2015

The Great Outdoors

Gregory has always loved the outdoors. Even through his early and middle stages of Alzheimer's he would go on long, 1-2 hour walks.

I didn't want to curtail his walking since he loved it so much. I always made sure he had his cell phone with him, although I was never sure he would remember to use it in case of emergency. If I got nervous, I would call him to make sure he was OK. He wouldn't be able to tell me where he was but he could describe a building or walk to the nearest corner (at my direction) and tell me the names of the streets. At one point I added ATT's "Family Map" so I could track his travels.

I decided that I would know when it was time to make a change even if it meant waiting until he was brought home by the police. I didn't have to worry for too long about getting a sign as shortly after we returned from a month in Mexico, he got lost in the building while returning the shopping cart from our condo to the lobby. He was gone for too long a time so I called his phone. He answered and told me he was lost. I asked if he was still on the elevator and he said no, he was on the ninth floor. I told him to wait and I'd be right there.

What had happened was that he got on the elevator and took too long to figure out which floor button to push. The doors closed and the automatic voice started instructing, "Select a floor. Select a floor." I am sure it made him even more nervous. Then the elevator went to the ninth floor because someone had called it and the elevator just followed instructions. Gregory got off the elevator and told me later that he walked with the cart from one end of the hall to the other but couldn't figure out where he was or what to do. He didn't think to call me so luckily I called him.

After this experience, I knew and even Gregory acknowledged the fact that he could no longer go out by himself and I joined him for his walks. When I arranged for college kids to be his companion they helped also. Thanks Ben, Ken, and Alaksh!

Gregory still enjoys the great outdoors and Manny takes him out during good weather into one of the two parks at Lieberman Center. Peaceful the Bear also likes to be in the sun!

Friday, May 22, 2015

An E-Mail from Amazing Susan


I’m about 1 million blog posts behind in commenting on your blog, they’re all in a queue in my inbox… I try to do too many things!

Anyway, sorry about that, I will get them eventually – hopefully it will be in this lifetime.

I just had to write and say that your thank you speech moved me to tears. I started to cry basically in the first paragraph and didn’t stop. I will make the comment on the post itself of course, and I thought I would take a few paragraphs out and create a blog post on my alzheimers story with a link to the full post on your blog of course.

But before I do that, I wondered if the documentary is available online? Because it sounds amazing, and I would like to either put it in my post or provide a link to it. If it’s not available online, is there a way to make it available online in the very near future? What can we do to make this happen?

 I am in complete awe of you and Gregory and I’m so glad that we have had the chance to connect. This disease is tragic, but there are so many treasures and gems to be found  Including new friendships and growth and deeper self-awareness.

Thank you so much for all you do.  I hereby make you an honorary amazing woman :P -  that’s kind of like being knighted by the Queen :P  or a Queen if you prefer :P


SusanSusan Macaulay

Writer, editor, coach, blogger, creator


Hi. Thank you so so much for your kind, supportive comments. Yes, the documentary experience was yet another “once in a lifetime” of which I have been fortunate to have had a number. And yes there are so many gifts that Alzheimer’s gives if you can be at peace enough to see them. Thanks for the honorary knighting. Can you imagine a Queen knighting a Queen (although I do not behave like one:-)

Yes the documentary will be available publicly and on my blog … but not for a while yet. The team will be entering it into a number of Film Festivals and the festivals all have strict rules about “previously seen” materials. I will discuss this further on a blog when I get the chance. 

You are more than welcome to quote my “Thank You Speech” or any other of my writing with a link for others to read the entire thing on my blog. I will be doing this more rather than printing an entire post so the poster gets “hit credit.”

Finally, just started a new facebook page called ALZHEIMER’s: A Love Story to "document the documentary" and to begin posting some of my blog materials. I also hope to do an e-book like you did!

All for now,

Visiting Gregory

When people visit Gregory for the first time they wonder if he will know who they are. My reply is "YES!" He may not know your name and he may not know how he knows you but he will know that he feels a special love for you and that you feel a special love for him.

Recently, a friend when asked if he wanted to visit Gregory with me after going out to breakfast replied, "I don't think so because last time I saw him he didn't know me. He kept looking away."

I think my reply was something like, "Maybe he was just distracted because you visited him on a day when a lot was going on around him." So we scheduled a visit.

In thinking about our upcoming visit I was wondering, "What if Gregory doesn't recognize him? What should my response be? Is that a good reason for a friend to no longer visit Gregory?"

Then I was reminded of a quote I read a long time ago about an old man who was asked why he got up early every morning and rode on a bus for an hour to go to the old people's home to visit his wife when she no longer knew who he was. His reply was simple but powerful, "She may not know who I am, but I know who she is!"

Unless a person with dementia is fully catatonic (and maybe even then) they enjoy visitors. They enjoy seeing someone who smiles at them, holds their hand, talks to them, strokes their head, gives them kisses. These are things everyone enjoys and in the narrow world of a memory care facility, perhaps they are enjoyed even more!

So I would hope that friends and family will continue visiting Gregory, when I go with them or if they go by themselves and whether he recognizes them or not, to help make his life a little bit more enjoyable and to make sure he knows that he is loved. Gregory may not know them but they know Gregory, and that matters.

Thursday, May 21, 2015

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.


Wednesday, May 20, 2015

Wandering or Walking?

Check out Kate Swaffer's poem on "Walking" vs "Wandering." Very expressive!

My reply to her was:
Kate, you did it again. 

First, you make it so obvious that words and language can influence how we think, feel, act ... against and for others with Alzheimer's and other dementia related illnesses. 

Second, poetry is a wonderful way to express and deal with one's feelings. I have self-published two volumes of poetry many of which are informed by Gregory and my journey through Alzheimer's. When Gregory and I could no longer share language, I turned to my computer to help me process my experiences, frustrations, and emotions which led to beginning my blog and my career as a Poet! I find that often my processing expresses itself through poetry. Other people have said, and I repeat, the poetry writes me not me it!

I have always seen the residents on Gregory's floor and also Gregory as people first and Alzheimer's just as the situation we are in. I have always been careful with my "language" when discussing things about Alzheimer's. But I am getting better at it. I love promoting silly little things like calling a bib a "cloth napkin" and diapers "paper pants." 

I have been able to live in their world as well as my own. I have been able to selectively "lie" about "B's" daughter having called to say she loves her. Such joy she felt at such little costs to me! 

I have been able to participate in a business meeting to discuss with "J" what we should do about the furniture delivery. Such a sense or purpose for him and what he used to and thinks he still does.

When "S," sitting by the elevator, asks me when her son will arrive, I tell her I am not sure but I see if I can find out.

But you have brightened my outlook on seeing the entire disease in a new way and how to treat and care for my fellow human beings according to how we talk about dementia and the people affected by it (both those with dementia and those who love and care for them.)

I have begun informing, educating, correcting, etc people with whom I come into contact when their language seems inappropriate. I do so gently and with love. Tonight at dinner, the sister of "M" shared with me that "M" has been aggressive today. I asked, "Is it aggressive or energetic?" The sister liked that and repeated, "Yes, energetic."

If I may, this is my BLOG:

Also, if I may, this is where my poetry is available: 
(P.S. If you buy a new new one, the profits go to Gregory's Lieberman Center Alzheimer's Special Care unit. The used ones available at a cheaper price are owned by others and their profits are not shared.)

Dumb Shit

Today during my visit with Gregory I attempted to give him a kiss. As I moved towards him, he said, "No!" So I backed off and then attempted again. This time he swatted me with his hand breaking my glasses.

"You dumb shit," I yelled, "Now look at what you did. I can't believe you were so careless and now my glasses are broken. What are you, some kind of retard? Fool?"

He just looked at me.

"Now I have to take these fucking glasses to be fixed and live without them for a week until I get them back," my anger elevating, "that was so inconsiderate of you and quite thoughtless. You really piss me off, all I wanted was a kiss and now look at what you have done!"

He just looked at me.

No, I didn't really say or think any of the above. The fact that he struck out and inadvertently broke my glasses was just a fact of life. Wasn't his fault. Maybe was my fault. I really wanted a kiss but sometimes his "No" means "Yes" so I tried again. Next time I will be more careful about getting in his range without protecting my glasses.

We just continued our visit as I taped my glasses together, laughing to myself at the image of a nine year old Michael who used to have to tape his glasses together more often than not, and laughing together about something else as I offered him a Tootsie Roll and popped one into his mouth.

Before I left for the day, I asked for a kiss, he leaned in and gave me one and I kissed back. It worked this time.

I also got to thinking about what I would have said if Gregory had broken them for me some 15 or 20 years ago. I probably would have been angry and read him the riot act. Or maybe not. But it makes me feel bad to think that we have had to get to this point for me to so calm about things, not to blame, to take things in stride. What really matters in life and in love is respect, understanding, compassion, and a few other descriptors.

I sure do love that man, even if I have to see him through my broken glasses.

Phrases to Learn for Caregivers

I have previously mentioned the changes that are going on in being more aware of the language you use to talk about and with people with Alzheimer's. Here is a good way to look at "problematic responsive behavior." Thanks to AmazingSusan for this. 

“Problematic” responsive behaviour is most often the result of:
A physical issue she is unable to pinpoint and/or articulate (e.g. pain, incontinence issue)
A “trigger” or triggers in the environment (e.g. noise, temperature, activity)
How I or someone else has interacted with her
The obvious way to stop anger and aggression is to address the root cause:
Find and address the physical issue
Identify and remove the environmental trigger(s)
Stop blaming her and start taking responsibility for causing responsive behaviours

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!


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. 

A Visit From Monica

Monica Petruzellii, part of the documentary crew, was in town today and visited Gregory and me at Lieberman. Afterwards she and I went out for dinner and met up with her dad. She returns to LA to finish her Chapman course finals. Gregory was very engaged and actually passed around kisses. I think Monica was surprised and pleased when he offered her one.

We SKYPEd with Gabe who just finished his last final back at Chapman in Orange, CA.

Monday, May 18, 2015

Whose Story Is It?

I continue to follow and learn from Kate Swaffer, a professional diagnosed with dementia who lives in Australia. Check out her latest blog, "Who's Story is It?"

These are my comments to her:

For one, I am very excited about two seemingly current movements: 1) Being more careful with "language" when describing people with dementia and recognizing that many of the "Inappropriate Behaviors," "Violence," "Acting Out," etc are more indicators of discomfort, fear, frustration, etc of not being able to communicate using the vary language that we so carelessly use! 2) Hearing from more people who have been diagnosed with dementia is so important to get a REAL picture of what is going on in their lives and on how they are and/or should be treated and cared for. I have to admit that as an educated, knowledgeable, caring person I almost didn't see being a care giver from that angle. In my case, Gregory was unable to communicate his needs but I did know him so well after 40+ years of a wonderful relationship I was able to know (for the most part) and meet his needs in a loving, respectful, honorable way. Thanks Kate for being there!


I am not afraid to cry. I cry for joy as well as sorrow, beauty as well as suffering, life as well as death. Emotions I know are a barometer of how I am doing today but these are tears of despair that periodically raise up when I once again grieve my loss  and the changes that Alzheimer's has showered on me. I also see the blessings that Alzheimer's has showered on me but right now I am only wet :-)

Sunday, May 17, 2015

Grace and Frankie

Jane Fonda and Lily Tomlin co-star as two women forced to reinvent their lives in this funny, honest new Netflix Original series. Elegant, proper Grace and freewheeling, eccentric Frankie aren't friends, even though their husbands Robert and Sol (Martin Sheen and Sam Waterston) have been law partners for decades. But when Robert and Sol announce that they're leaving their wives for each other, the two women start to bond in ways they never expected.
I am watching this Netflix series and loving it. The homosexuality of Robert and Sol are accepted as the norm and the emotions that all four characters are going through are real, raw, and honest. There are many tender moments between the male couple and between the new relationship of the ex-wives, as well as the original married couples. Often these tender moments bring tears.
But besides loving it, I am having some problems. So here I sit, with tears in my eyes not because of Grace and Frankie or Robert and Sol but because of Gregory and Michael. I am yet again grieving my loss, my loneliness, my aloneness. 
As an older couple (in their 70's?) the men share moments of truth and honesty, of anger and love, of dealing with the complexity of their new relationship and of life itself. Those moments for the most part are over for Gregory and me. Our interactions are loving and beautiful, the are meaningful and honest, but they hold no depth of today only depth of spirit and love.
And I miss being able to sit on the sofa with Gregory supporting my tears, or making me laugh, or being able to spoon or hold hands as we drift off to sleep. So I take my tears away from the TV and out onto the balcony where I sit in the wonderfully spring into summer 70 degree air at sunset. And I look at the other chair next to the table and I cry. And I am lonely. And I miss my honey being here with me at home. And what is home without someone to share it with after 40+ years of love?

The More Than Ever Trust and Education Foundation

When Gregory was first diagnosed with Alzheimer's in 2004, he and I went to a lawyer who specializes in helping seniors with life planning and to set up trusts to insure that the rest of their lives could be well lived financially and medically.

Gregory divested all of his savings, investments, titles etc by giving them to me and I in turn gave them to the trust for which he acts as trustee. This maneuver helped Gregory qualify for Medicaid some ten years later.

Making these "end of life" decisions was not easy, but every time we left our lawyer's office we felt a sense of empowerment over being able to control some of our future. 

For example, for a while we struggled with deciding between burial and cremation but the decision became much easier when we realized that the issue was not burial vs cremation, but rather that we wanted to live, not to die. And since we cannot control that, the decision came easily. Cremation it is.

We had to name the trust and decided to choose a sound bite that we had been using since we received the diagnosis of Alzheimer's: I love you more than ever and our love will continue to grow as it has since the day we met!

So it became: The More Than Ever Trust FBO (for the benefit of)) Michael A. Horvich 1997. I will also act as the current trustee with provisions are made in the trust to take care of Gregory L. Maire in the event that I pre-decease him. 

The other day, I visited our lawyer again to make sure our "papers" were all in order and to set up La Casa Norte as recipient of some of our estate when we die to provide education / job training for candidates select by Casa Norte who through their community programs have proven themselves capable and serious about improving their life though education.

This is a video of my telling Gregory about the Educational Foundation. I think he understood and his engagement and amazement at the possibility of doing this is apparent.

We have been working with Casa Norte for many years via cash donations, attending events, donating Michael's photography and jewelry to auctions, giving many of Gregory's computers, desks, chairs, and lamps to their newly opened half-way house when he closed his business, sending outlived clothing to their Care Closet in which young men can choose clothing for job interviews (can you imagine how excited they would be when finding one of Gregory's expensive Armini suits or shirts and expensive shoes on the closet racks?) and giving food to their community pantry.

Casa Norte's mission is to serve youth and families confronting homelessness providing access to stable housing and deliver comprehensive services that act as a catalyst to transform lives and communities. So Casa Norte seemed to Gregory and I, the most logical place to lend our support and a "passing it forward" for been so fortunate to have lived the life and love Gregory and I shared.

This is a second video the shows Gregory's continued excitement about this decision which we had talked about many times in the past when he was more able to do so and his joy at our being able to do this.

Here are a few of the wonderful things Casa Norte is doing:


HousingLa Casa Norte follows a housing first model and offers a continuum of housing resources and opportunities to youth and families who are at-risk or experiencing homelessness throughout 43 different zip codes in Chicago.
Our programs include permanent, transitional, and emergency housing options that aim to support our clients as they work towards long-term stability and self-sufficiency.
We collaborate with a large network of property owners to increase housing stability and opportunities throughout the community.

Support Services

Support ServicesAt La Casa Norte, we believe that both, housing and supportive services are critical to ending homelessness. Our programs include life-skills and technology training, education support, employment-readiness, case management, therapy, food, clothing, and transportation assistance.
Our efforts to collaborate with an extensive network of human service organizations allow us to offer additional resources to our clients. Through the support of our partners, we are also able to offer clients access to mental health and substance abuse treatment, medical care, day care, legal advocacy and other needed assistance to support their increased housing and economic stability.

Saturday, May 16, 2015

Is the Glass Half Full?

Susan McCauly shares some perspective on how language affects how we deal with and see Alzheimer's.

She shares a wonderful look at Alzheimer's which begins to see the good parts of a person that continue as the disease progresses rather than listing the stages of loss and inability. I have found that in my readings, web searches, fellow bloger posts, etc., this change in focus is becoming stronger. What do you think?

"Amazing Susan" says: To help us understand dementia, experts have come up with ways of describing different phases of the disease:

1) The Alzheimer’s Scale (3 stages): mild, moderate, late.
2) Four-Stage Model (4 stages): early, middle, late, end-of-life.
3) Global deterioration (7 stages): no impairment, very mild decline, 
mild decline, moderate decline, moderately severe decline, severe 
decline, and very severe decline. (Keep those sorted one from the other 
if you can!)

These scales and descriptors focus decline and loss rather than on the richness of the human experience.

At best, they set us up to see the glass half empty rather than half full; at worst they foster the belief that people with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion.

This overwhelmingly negative perspective is an injustice to people who have dementia, and is problematic in all kinds of other ways. Among them:
  • It goes hand-in-hand with the traditional biomedical model of the disease, which in itself creates a multitude of care issues.

  • It results in people treating people with dementia in demeaning and unhelpful ways.

  • It causes family, friends, and caregivers to suffer more loss, pain and grief than they need to.
No wonder we are all so terrified of this “horrible” disease!
But it doesn’t have to be like this. I know because I have discovered 
treasures amidst the tragedy.

One simple way to transform the way we see the disease and the people who have it is to use a positive approach centered on people’s humanity and on what they can do rather than on what they can’t.

Go to Susan's site to check out Tepia Snow's look at the gem approach to talking about Alzheimer's Disease.