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.

Thursday, January 30, 2014

Settling In - Not Always A Good Thing

I hope the title of this post confused you. Settling in should sound like a good thing. But they say it takes a while for a new resident to settle into new surroundings on a dementia ward.

It takes time for the workers and nurses to get to know the residents routines and needs, rhythms and patterns. As you know, we have had two Care Conferences dealing with these things. Everyone on the floor is friendly, helpful, and wanting to do the best for Gregory.

So why is it not always a good thing. Would you believe two falls and one fright so far? The day after he was at Lieberman, the nurse called me around 8:00 pm to say Gregory had been sitting on the sofa in front of the TV and when he got up he fell on his knees. No great damage. No broken skin. A little pink. Nothing more. But wanted me to know. I thanked her and it felt good that they were keeping me informed.

Last week, I noticed that Gregory's ankles were swollen and I told the nurse. Later that week I notice that his ankles were very very swollen and mentioned it to the nurse again. At midnight she called at home and told me that she checked and sure enough they were so swollen that she called the doctor. He told her that Gregory could go to the emergency room for a workup or she could order a blood clot scan the next morning.

She and I talked about the implications and I decided that we could wait until morning for the test that would take place at Lieberman instead of putting Gregory though the trauma of a middle of the night emergency room visit. One possibility in waiting was that if he had indeed thrown a blood clot, it could travel to his brain or heart.

I told the nurse that while I hoped that wouldn't happen, we were not afraid of death. It was a hard decision for me to make and I had a hard time falling asleep. Finally, I said out loud, "Universe, if you are ready to take Gregory, please go ahead, I am ready, he is ready, and you have our permission." That said, I fell asleep easily.

Next day the clot scan showed no clots, they put him in special stockings to help with the swelling, and the ankles have looked better each day.

Finally, at seven AM this morning, I got a call from Lieberman that Gregory, after being up and dressed, fell backwards in his room (there by himself) and was found on the floor with a gash in his head, a bruse on his forehead, and in a lot of pain. They had called 911 and the ambulance had just arrived to take him to the hospital (which by the way is just across the parking lot.)

I had my clothes on and was out of the door (without any breakfast and not even one cup of coffee) in five minutes and got to the emergency room less than 10 minutes later. I am grateful that Lieberman Center and the hospital are so close to the condo.

Gregory looked terrible and was moaning with pain but had been able to remain calm throughout the ordeal. He was happy to see me and I soothed, stroked his hand, etc. They did a CAT scan and several X-Rays and found no additional damage. After the blood was cleaned up he didn't look quite so bad (head wounds bleed profusely.) Eight stitches later and a breakfast of oatmeal and pancakes the ambulance picked him up for the trip across the parking lot back to Lieberman.

Gregory after napping on and off in his own bed in his own room back at Lieberman and after a hearty lunch is with Alaksh (who I called for support right away, not knowing how severe the injury had been.) I am at home getting ready for a 90 minute massage and then will go back to sit with Gregory.

While this all might seem difficult, it has been surprisingly easy to get through and to make decisions about. In my role of Secondary Care Giver, which you have already heard about and will probably hear about again, it is good to have so many resources and people supporting me and caring for Gregory.

Besides the people that got him ready for the first ambulance trip, so many people have checked in since our return to his room: head nurse, day nurse, the social worker, his day caregiver, the lunch lady, and various higher level supervisors. Gregory is indeed being well taken care of.

Sorry for the pix but in an effort to fully document ... PS later I will post a photo of  how GOOD Gregory looks after the episode.

Wednesday, January 29, 2014

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.

Tuesday, January 28, 2014

Realizing vs Forgetting

I may have blogged this one previously so bare with me:

It is NOT PAINFUL when I wake up in the middle of the night or in the early morning realizing that Gregory is not in bed with me and realizing that he no longer lives at home in the condo with me. I am slowly learning to deal with that.

It IS PAINFUL is when I wake up in the middle of the night or in the early morning forgetting that Gregory is not in bed with me and forgetting that he no longer lives at home in the condo with me.

To Breathe, To See, To Live

The Gregory we know and love only exists in our memories now. He is still handsome although seems older. He is still playful although on a simpler level. He responds and replies but at a lower level.

His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.

He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.

He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.

He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.

Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.

I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears,  to live for the loss.

Monday, January 27, 2014

Care Conferences

So far there have been three "Care Conferences" and countless small interactions with the Fifth Floor Lieberman staff to discuss particulars for Gregory's care. Predicate this post by saying the I know that "I AM THE ONLY ONE WHO CAN REALLY BEST TAKE CARE OF GREGORY." then add that I also know that while this is true, it doesn't matter and there are many people who are already taking good care of him.

This actually was something I dealt with long before he went into Lieberman and it gave me a lot of grief. Now that we are in the heat of it, I am OK with being part of the Secondary Caregiver Team and giving Lieberman the primary position!

Being aware of the finer details of Gregory's needs has been an interesting exercise. I was amazed at having to think through the "details" of my caregiving. Some things I left out (but since mentioned to the team) like his sitting to pee, his being on a Glaucoma watch (not major but a very very slight increase in the eye pressure,) and his need for prunes to keep regular.

I know that I this may be too personal for some of you, but the need for documenting our continued Alzheimer's experiences with the hope of not only documenting but also the possibility that the words might support someone who needs to hear them, I need to be honest and upfront if not detailed. (I do hold back a little:-)

FYI: Here are the notes so far. I keep a running list of notes to aid my memory and to allow for followup. At the meeting I hand each participant a copy. So far these meetings have included the social worker, social worker supervisor, head nurse, nutritionist, activity director, and volunteer coordinator. Impressed? I was and continue to be!

You do not need to read through all of these details but I wanted to "paint" a picture of the kinds of things I have been having to share with the staff so they can better provide for Gregory.

Saturday:     01/11/14 

Intake meeting. No notes

Monday:     01/14/14

Didn’t eat much for lunch and dinner. Did he receive support?
After dinner ended up in his room behind ½ closed door and peed self. Embarassed.
I changed him.

Needs help and encouragement eating
One item at a time helps
Sometimes uses fork
Can use spoon more easily
Uses fingers to assist 

Who does nails? hair? deodorant? body cream? face cream?
When is shower? 

To bed by midnight up by ten 
Likes to take naps
Used to have coffee & cookies every day at 5
Music (classical)
Art (painting with oil sticks)
Reading out loud
TV Big Bang Theory
Looking at picture books
Likes body massage
Avid swimmer

Move armoire out 
Hang pictures and clock

Cost of Aricept and Namenda by me vs by Lieberman?
Cost of laundry?

Physical therapy? Check out swallowing & biting food?

Raspberry Jam helps with pills

Liquid vitamins and Liquid minerals easiest (I will buy)

Wednesday: 1/22/14

Bed call button broken
Higher toilet support rails?
TV list?
Do you need visitor list?

Liquid Vitamins & Minerals
Glaucoma watch
Prostrate cancer watch
HIV test results?
Tushie rash/fungus medicine
Ear dryness medicine
Wet wipes
Butt pain/spasms at times
Pee/Poop records?
Likes dried fruit: prune, apricot
Prune juice needed
Reading glasses

Haircut schedule?
Massage schedule?
Other visit schedules?
Art Therapy/supplies?
Activity schedule?
Kinds of activities?
Volunteer activities?
Shower schedule?
Shower shoes?

Eating better.
More meal support?
Likes unsalted, raw nuts

Bedtime clothes vs Daytime clothes

Sunday, January 26, 2014

Reality Sucks

Reality sucks but has better stories, is more exciting, provides many lessons, makes love larger because of the sorrow, and in the end proves to be the "stuff of life!"

Music Activity

Each day at 3:00 a music activity is scheduled. One day piano, another guitar, some days CD classical recordings, etc. Some residents actively participate with hand clapping and singing along, some just sit and enjoy, some are sleeping, some are oblivious. When I go to one of these activities with Gregory my heart is light and heavy at the same time.

(For privacy, I have blurred out resident faces.)


Sometimes "PRETEND" is a wonderful thing to do! Today the Lieberman Center (which contains a floor each for End of Life, Cardiac, Rehab, Alzheimer's, Assisted Living, and Independent Living) had a dog show called "The Lieberminster."

All kinds of dogs (belonging to residents, families, volunteers, employees, staff, etc) participated in a dog show in the main social hall on the first floor. Several hundred residents (in all states of ability and awareness) and their families joined in the fun.

Chairs, wheel chairs, beds, and other strange looking machinery congregated in a circle around the center "show floor." A table of judges awarded prizes. Various award areas included among many: best trick, nicest coat, cutest dog, best behaved, owner/dog look alike, and shyest.

Throughout the show, the dogs were walked around the floor so residents could get a close up look and possibly to pet them. Every now and then a minor scuffle between dogs (and once between residents) broke out.

The "dog handlers" were all amateurs. The event, while well organized, fluttered and stopped depending on the goings on and/or needs of the residents. The "parade music" was sometimes too loud and sometimes too soft. I am not sure how alert the judges were, or how discriminating for that mater. The awards were blue paper circles with paper ribbons attached and magic marker printed categories.

Many of the residents were looking in the wrong directions, or slumped over asleep, or talking to themselves, or just not present. Many of the residents were smiling, attending, petting, laughing, and having a generally good time.

Refreshment included make-it-yourself powdered hot chocolate and wafer cookies.

The beautiful thing about this is that it took place as an important "something to do." Many people were cheered up. Advertisements were posted on each floor and on the elevators. People looked forward to the event and discussed it (if able to do so) over dinner. The residents felt a little better, the families who attended felt a little better, and my guess is that the dogs felt a sense of altruism!

So if this was only a PRETEND dog show, and if much of it was past the ability or attention span of many of the attendees, it moved me with its respect for fellow humanity and the recognition that each human life, no matter how diminished; is worthwhile, to be valued, to be loved.

This will give you an idea of what I mean by The Lieberman Center Fifth Floor sometimes feeling like I am in a Fellini movie without the background music!

An E-Mail to Friends

Dear Susan and David,

Hi. This time of year is usually when PV beckoned. 

Now it's the Lieberman Center at $9,900/month. But after six months we will switch to Medicaid and $60,000 is a small investment for Gregory to be taken care of for the rest of his life! I go to visit almost every day for an hour or two. I have been fixing up his private room so it is a refuge for me, for visitors, and perhaps for him. I know he thinks it looks nice. 

A small freezer/refrigerator combo in black, a black chest of drawers for "kitchen" storage, a small flat screen TV (large ones in pubic spaces,) two nice sturdy chairs, one matching ottoman; a desk running under the window with a plant, framed photos, a coffee table picture book on a tilted stand, a cup with a few pencils and his reading glasses (not sure he knows to use them;) a bed side table (with locking top drawer for me to keep things private,) a dresser, an armoire, a large closet, paintings that Gregory has done on the walls. The bathroom is tucked in as well but a shared shower (since supervisions is needed) is down the hall. 

Yes, I am on an emotional roller coaster. When attending to business I am OK but during the still hours of the night I miss him with my tears. Sometimes visiting him at the Center is OK, other time very difficult. I have compared it to being in a "Fellini  Movie" without any back ground music! I have found that many people do not know Fellini so I have attached a clip. 

The most difficult part is that in daily life it is as though he is dead; the condo is quiet, everything is mine, he will never be here again to share the love we created it with, I sleep alone instead of drifting off together while holding hands. I didn't expect to grow old by myself and that makes me sad as well. I try not to think of what "old age" will be like for me or for Gregory for that matter. Not pretty and certainly no future in it!

On the other hand in my new role as Secondary Care Giver, my life is a lot less stressful, the work load is reduced, and at times "out of sight out of mind." I can get dressed for one, not two. I can clean up after one, not two. etc. I can travel again and continue to enjoy theater, opera, etc. I'll have more time to write and to be creative. Maybe I can be a supernumerary at the Opera again, I have missed that a lot. Who knows what lies ahead but it does feel like there are many doors waiting to be opened.

His family has always been, and continues to be supportive of everything I do and all of my decisions. They go out of their way to let me know they are here for me and to feel loved. I love them dearly as well.

In many ways, this whole experience  of Gregory's being at a memory care center is surreal much, as I said, like a Fellini movie. The stages of Alzheimer's while Gregory was at home were gradual and in a familiar environment. I worked diligently to keep him safe, happy, content, occupied and that worked well up until the last couple of months. We still ate out and attended theater etc but it got more and more difficult.

In the end, I lost my patience with Gregory less and less as it became more and more obvious that he did not have the abilities/skills any longer. His behavior no longer looked bad or selfish or thoughtless (even thought I knew it never was meant ... it looked like it was and was able to trigger old responses. These were quickly stopped with apologies quickly in hand.)

All along, I have continued to develop myself as a person with a life and interests but most of my thoughts and time were with Gregory. Now I have a lot of time on my hands and a life to redefine. I am grateful for so many things and my heart is happy that Gregory is being well taken care of. All for now, as always,


P.S. This e-mail was written for you two but I will turn it into a BLOG.

Saturday, January 25, 2014

On Al Maire's Passing

Gregory's older brother (by 15 years so he was more like a father to Greg) died while Gregory was in the hospital and before he moved into the Lieberman Center.

I CHOSE NOT TO TELL Greg about his brother's death, since he is living so contently in the moment and never asks about the past. Why replant any of those memories if they will only cause grief?

However, I honor the death of someone who meant so much to Gregory, his older brother Alan. Al's first wife Dellaura continues to keep in touch and his current wife Iris, in short order worked her way deeply with love into both Gregory and my hearts!

In Al's obituary it mentioned Gregory and spouse. That was enough for me and I was honored to be included. Then I received this note from Iris:

There was an error made in the obit that Noblin Funeral Service put on their  web site. They omitted your name, but I called them and when I checked the correction had been made.

I love both you and Greg and feel so fortunate that I was able to be part of the Maire family for the past 30 years. If Greg is able to understand any of this, please give him my love and let him know that Al was very proud of his youngest brother.  We have both lost our lovers and best friends, though in different ways, and folks here remind me that our happy memories of all these years will bring us a measure of comfort and peace.

Let us please keep in touch. You both are in my prayers every day.


Life Legacy

Alan Edward Maire, age 77, a resident of Tome, NM passed away on Thursday, the 9th of January, 2014.
Al was a proud veteran of the United States Marine Corp, hurrah! For a number of years he was active with the Belen Model Railroad Club and also enjoyed working with his model train setup at home. In his earlier years he worked at Maireco, Robertshaw Controls, in advertising in Connecticut, and with Nobel/Sysco in New Mexico.

Alan was a very accomplished artist in wood carving, specializing in native American and Western figurines, showing works in Santa Fe and Taos. His pieces are in homes around the United States and Switzerland.

Alan was preceded in death by his parents, Edward Benson Maire and Helen Godskenson Maire of Goshen, Indiana.
He is survived by his wife of 30 years, Iris Ann Jones Maire; three children, a son, Edward Maire and wife, Barbara of Claremore, OK, daughter, Michelle Brown and husband, Mark of Las Curses, NM, and daughter, Danielle Maire and friend Jolene of San Angelo, TX; also the childrens mother, Dellaura Riggles of Indiana. Al has four step-children who loved him very much. They are Terri Ackerman and husband, Dale of Loch Buie, CO, Kymberly Dunning and fiancé, Jeff of Annapolis, MD, Marcus Dunning and wife, Holly of Albuquerque, NM, and Michael Dunning of West Jordan, UT.
Al is survived by his brothers, John Mark Maire and wife, Diane of Battle Creek, MI, and
Gregory Maire and spouse Michael of Evanston, IL; two nieces, Elizabeth Karper and Renee Breitbach; and one nephew Mark Maire; Sixteen grandchildren, Ted Duke, Jake Maire, Jesse Maire, Sarah Brown Morris, Corrie Brown Wescott, Ambyr Carolus, Austin Carter, Tyler Carter, Chase Ryan, Samantha Ryan, Jessyka Dunning, Marcus Anthony Dunning, Tre Dunning, Cameron Dunning, Baylee Dunning, and Sidney Dunning; Eleven great grandchildren, Charlie and Lola Duke, Corbin Maire, Dylan, Devon, Wyatt, and Allie Morris, Shaylee Wescott, Amariana Carolus, Avery Carter, and Kaiden Dunning. Al was looking forward to another little one in March.
A special thank you to the fine staff in the emergency room and the second floor of the Heart Hospital for the tender care that was given to Alan the short time he was there.
A Memorial service will be held at Santa Fe National Cemetery on Wednesday, January 22 at 10:30 am.

Arrangements are being handled by the caring professionals at the Noblin Funeral Service Belen Chapel, 418 W. Reinken Ave., (505) 864-4448. 

Thursday, January 23, 2014

Yet Another Metaphor

Gregory is my love song and I am his, even though there are no words left to be sung.

Another Metaphor

Our life has been a screen play already written and delivered but without any applause.

Wednesday, January 22, 2014

The Way We Were

Good Advice, Late in Coming & Easier Said ...

I subscribe to a number of memory care facilities e-mail blasts and on line support. (I am in the process of un-subscribing to many of them as they have become irrelevant.)
The following came in today and it did make me feel a little guilty. If I had read this prior to Gregory's psychotic episode would I have acted differently? Was I too demanding of Gregory with expectations for self-help set too high for his abilities? 
But guilt aside, I don't think so if only because most often he would figure out what to do without my help allowing him to maintain a sense of independence. Also, the incidence of his getting overwhelmed and upset and out of touch had increased exponentially over his last few weeks at home. He needed constant care and attention and often refused that care and attention.
However, it does make one think... It also makes it seem easier than it sounds.
Does your loved one ever seem to "lose it" over nothing? Overreactions to otherwise ordinary requests or events -- crying, cursing, pacing, or lashing out physically or verbally -- are called "catastrophic reactions." They can befall anyone with dementia and can be upsetting, even frightening, to a caregiver. One common cause: too many competing stimuli. If a room is noisy and the person is feeling rushed or is dealing with other strong emotions (embarrassment, frustration), and then tension spills into an argument, the result can be assorted behaviors that overwhelm the person and his or her ability to react more typically. Hard as it may be for you to stay calm, it really helps. If you can guess the trigger, remove it: Change the subject, change the activity, turn off the radio. If the person is particularly worked up and it's safe to leave him or her alone for a bit, do so. When things seem slightly calmer, forget it happened and then distract your loved one with a favorite activity or snack.
And then to end of a frightening note, I was talking to the husband of the daughter of my step Aunt Elaine. He is a rabbi and shared that in his congregation, a woman with Alzheimer's stabbed her husband to death with a kitchen knife, thinking he was an intruder in their home. Not to lighten the horror of it, how do you follow that one with a favorite activity or snack.


Thank you Pema. Your advice arrives just as I need it. It doesn't make me any less sad, but it is OK. And being a double negative, perhaps that means it IS OK! Thank you.

Tuesday, January 21, 2014

A Final E-Mail Blast to Family & Friends

At the beginning of 2014 you received an e-mail blast about Gregory's decline. I guess that in some ways I had a fore-telling of what was to come a short couple of days later. Now with the current changes, I have told our story so many times that I do not remember what I have told to whom. I wanted to do one last e-mail blast to make sure everyone is up to speed on our situation.

After a very difficult year, then month, then week; ending in what I call a Final Week in Hell;  Gregory (diagnosed ten years ago with Young Onset Alzheimer's at age 55) is now living at a memory care facility. After a major psychotic episode (common at his stage of the disease,) I had to decide on this placement for him. He was in the hospital for observation for a week and on sedatives to help him for less than a week and now no longer needs them. He is once again calm, happy, and content. He is being well looked after, I visit every day, and he has NOT once asked, "Why the change?" For now, he is truly living in the moment.

In all honesty, I do not know for sure who Gregory is at this point. The change was so drastic that I do not know what he knows, or thinks, or feels. As I said above, what I do know is that he is calm, content, happy, safe, and living in the moment. He is more unsure on his feet, moves a lot more slowly, and to me feels a lot older than he was a few short weeks ago. Strangely enough, however, he has been able to put together phrases that make sense and has re-developed a sense of humor (both of which have been absent for quite a while.) Have you ever thought how complex it is to tell a joke or be funny? 

It was a necessary but none-the-less difficult decision. I was no longer able to support him in the way he needed to be supported: physically, mentally, emotionally. I always said that I would take care of him as long as I could and as long as it was the right thing to do ... not for me ... but for him. Now both Gregory and I can begin to adjust to the next phases of our lives. We walked together respectfully and lovingly for 38 years, ten of those with the Alzheimer's diagnosis, and now our paths diverge. The divergence actually began on January 10th, our 38th anniversary. That date will now be the anniversary of our meeting as well as our new beginnings. I am so sad but my heart feels good and right.

Thanks for being there for us over the years. You have played a significant role in Gregory's and my life and therefore over time I have felt it important to keep you informed of our progress, whether we were integrating or disintegrating. At this point further updates most likely will not be necessary. Iyou want to keep up on how things continue to settle in as Gregory and I get used to our new digs, roles, and lives; check my BLOG when and if you feel you want to: Also, if you are in the area and would like to join me on a visit to Gregory at The Lieberman Center, feel free to get in touch and we can make arrangements.

A metaphor for this recent change in our life: "We had rehearsed for this for a long time without knowing when opening night would be. Then "Curtain in 15 minutes" was announced and we were not even in costume or makeup. When the curtain did go up, however, everyone was in their places and the show went on without a hitch. 

Again, NOT easy for me to be going through this, NOT easy for you to read about it. 

Again, do not feel the need to reply. I understand.

Again, you are already helping just be being part of our circle of family, friends, and acquaintances. We appreciate you. 

Michael (and Gregory)

"The Cleaner Floor" A book by I. P. Standing

Men are known to stand while peeing. Women are known to sit while peeing. Leaving the toilet lid up ... or down ... has been debated since the beginning of the flush.

Women also squat, especially in public, filthy bathrooms or in the forest preserve (watch out for the Poison Ivy.) Men have it a little easier in that they can aim the hose and avoid such disgusting situations.

But sometimes, men sit. Yes, you read it here. Gregory and I sit when we pee (at least at home we do.) Why you may ask? And why BLOG about it you may wonder?

First, even though you might think it would be easier for a man to take a fast whizz standing, it is actually just as easy to drop trow and sit to pee. Especially in the cleanliness of one's own bathroom. By sitting you can gain a few moments of meditation time and solitude from a busy day. You can catch up on a magazine article if you choose. On an active day, you can get off your feet for a few moments. And the floor definitely stays cleaner.

The real reason I post this is because with Gregory's change in living situation, and during his stay in the hospital, he had urination difficulties. Couldn't pee? No. His caregivers assumed that he stood to pee so would take him to the bathroom and stand him in front of the toilet. With no results.

Eventually he had to be catherized and they found 500 cc of urine in his bladder. Usually when a person gets +/- 250 they begin to feel the need to pee. Gregory was either not able to communicate this, and/or didn't recognize the signals, and/or didn't recognize what he was to do by standing in front of the toilet.

When I found out about his being catheterized,  I realized  I had not mentioned his sitting to pee. I took that minor fact for granted since it is what we have always done for over 38 years! Once it was established, Gregory had no problem with peeing. Problem solved.

Well solved at the hospital but now at the memory care facility, at times Gregory feels stubborn and refuses to sit when asked to. Also, for a while the staff was not taking him to pee every couple of hours so he found a corner in his room and wet his pants. (I found him behind his room door looking very embarrassed and standing in a puddle. Made me cry.) You know I'll be keeping up with staff on this one!

I have found (as I continue to fill in the cross word puzzle that is Gregory's new living situation at a memory care facility) I have to analyze the details of his life so they can provide more accurately for his needs. Especially since he cannot himself instruct the slew of new caregivers (according to the shift, the day of the week, the days off, etc.)

My new role as secondary caregiver continues to develop. At the first Care Conference with the Head Nurse, Dietitian, and Social Worker we focused on medications, eating, toileting, daily routine, personal grooming, etc. At the next one tomorrow, the topics will include a review of how he is settling in; how staff is meeting his needs as discussed as the previous meeting; a closer look at what kind of activities he will be participating in; schedules for shower, haircut, massage, doctors, etc; switching from a large handful of vitamins and minerals (which he has had difficulty swallowing) to a spoonful of liquid supplements; visiting volunteer opportunities for him, and a few others.

He has continued to be calm (without the sedatives needed when he was at the hospital,) happy, and content. He is living in the moment. Not once has he wondered about why he is there or asked about "home at the condo." He doesn't seem to notice the array of patients on his floor: all of them older, most of them with more advanced dementias, many in wheel chairs, many catatonic, many sleeping most of the time, incontinence here and there. In fact when one calls out, Gregory wants to help. As he roams (strolls) the halls, he smiles at them kindly. He has quickly become one of the favorites of the nurses and staff and they comment on what a lovely, kind, gentle man his is.

And since he is content and doesn't notice that being there is like being in a Fellini movie without the background music, I don't mind it either and am able to see the place through Gregory's eyes. Safe, clean, warm, active, happy!

Saturday, January 18, 2014


You might want to follow some of the quotes that "speak" to me and are posted at:
Many of them have been important messages supporting Gregory and my living with and loving someone with Alzheimer's Disease.


With reference to the post early this morning:

Gigi, Gregory's chosen kitten who is somewhat aloof and loves only in her own time, came to me while I was weeping to offer her support! She hopped into bed, came up by the pillow, licked my face, and let me pet her for quite a while.

A Hard Place To Be

It is half past midnight. I snuggle into bed. I read a little. I close the light. Time for bed. Time for sleep.
I feel the sadness rise in me and try to damp it down. Suppress it. Hold it in. Tell it, "Go away!"
The tears begin. The sobs begin. The shaking. The howling. The gasping. The flood. The tsunami.
So many never-agains. So many for-evers. So many never-to-be futures for him, for me, for us.

I miss my friend, my love, my partner, my soul mate, the only one who really matters to me.
Never to be held. Or rocked. Or poked.  Or joked. In the same way now as then. Never again.
Never to be supported but to support him. Never to calmed but to calm him. Never to be OK again.
Never to ease my pain but to be in pain so strong, so sad, so deep, so insidious, so lasting.

I miss him so much. What he used to be. What he has been. What he could have been yet.
I miss us so very much. What we used to be. What we have been. What we could have been yet.
I miss myself so much. What I used to be. What I have been. What I will yet become without him.
Change is so hard. A rock and a pitcher. A rock and a hard place. Rock, Paper, Scissors. Broken.

The tears continue. The sobs continue, The howling gets louder. The future grieves and so do I.

Friday, January 17, 2014

What Is It That I Do Want?

This seems to be very good advice in my current dealing with Gregory and my paths diverging.


Sound Bite

"We've been rehearsing for this for a long time but we didn't know when opening night would be. Suddenly it was announced, 'Five minutes 'til curtain.' and we weren't even in costume and didn't have our make-up on. But when 'Places' was called and the curtain went up, we were where we were supposed to be."

A Funny Thing Happened On The Way To The Memory Care Facility

Eegee, a male Ethiopian assistant on Gregory's floor at Lieberman Center asked if I was Gregory's father! I was honored ... but no comment!


Hi. Greg continues to settle in. I go every day to visit but only for an hour or two. I am hard at work learning my new role as secondary caregiver. They are getting to know him and how to provide for him. He is content and "spends his day." To be with him is to realize that he is a very different man than he was before the psychotic episode. He is really living in the moment and is happy with that. Today we visited with his companion Alaksh and G was happy to see him. We set up a desk for him, stocked his mini-refrigerator, assembled two lovely lamps - one for the desk and a matching one on his night stand. I am creating a refuge for him but mostly for me and his visitors away from the Fellini environment that is any nursing care center. Day by day...

Flow Free

Through the ordeal of Gregory's psychotic episode and hospital stay, I realized again that no matter how much I love him, the path with Alzheimer's is his and I choose to walk along side him. For a while I became so intertwined with being his caregiver, I felt responsible for everything that happened to him and forgot this separation of path. Now I am walking slightly behind him. Lieberman Center is responsible for his life, his health, his safety, he keep. I am there to help make it a little bit better, to hold his hand, and to figure out my new role as secondary caregiver. The following quote, which I just came across after some 20 years, applies:


He gulped on the last few words and broke into sobs again; and, as I did not appear to have it in me to soothe his pain, I did nothing. You reach a point at which you cannot control the event, so you stand aside and let the hurt flow free.

How Long Has This Been Going On? Ethan Mordden. Page 590. 1995.

Thursday, January 16, 2014

More Quimbys

A photo of Sit With Me A While: The Collect Works of Michael A. Horvich, 2010-2011 with poet. Or is it a photo of the poet with his book?


Dear Michael,

It’s about time I tell you what I think of you. I’ve been talking about you with others, and it’s past time to say it to your face.

This is not about your sense of humor, your collections, or your creativity. It’s about your brave conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.

What I want to speak of is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. Your management of your own frustration and disappointment.

When Gregory became confused about dressing, you labeled, and later, laid out his clothes. When he couldn’t figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, a raw comparison to parents celebrating a child’s milestones.

When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn’t work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are, his touchstone. You are the one he looks to for comfort, stability, and anchor.

You’ve always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, I have the time. I don’t need to go anywhere and I can take Gregory with me if I need to run an errand. You were saying, why not care for Gregory at home indefinitely; I have the capability. I don’t think I could ever be that generous.

But one day, that wasn’t enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparedness, you did not panic. You found him a place to be where he is comfortable. He is calm and happy again. Nothing about you changed. Gregory changed.

         Through all of this, you also cared for your extended family and friends, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgement, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.

I am honored that you include me in your circle, and I don’t know what I do to deserve it. I do know I need to reflect on how I can be more like you.  

I’ve told my children, a good friend should be someone who makes you want to be a better person. You are a good friend!

I can only aspire to be in a relationship like the one you had with Gregory all those years. What I can do is to try to be more patient, more thoughtful, more devoted, as you have with Gregory. Because of your example, I am making an effort to make more time, take more time to think about how I can help them. Your influence improves the world.

You may not be a saint—but you may be a minor angel. 

Love Pat