Shift

Watching TV

Always more to learn when loving and living with Alzheimer's Disease. I continue to get supportive/  informatve e-mails from the various memory care facilities I visited before having Leiberman be our choice. The topic this one discussed, watching TV, was one which happened to me and now in hindsight I realize that Gregory's upset was his way of telling me he was having trouble following the plot of a TV series he used to love. His reaction surprised me but now I understand.

Certain types of television become harder to track and therefore enjoy as dementia progresses. An activity that should be a pleasurable way to pass time instead can become vexing.

Complicated plots may be too confusing, as earlier developments can't be remembered. Shows with quick cuts and no story line (such asAmerica's Funniest Home Videos or cooking shows) work better. 

Slow-paced documentaries or nature shows may also appeal more. 

Avoid commercials if you can, because each break in the show presents a whole new story to follow; instead use TiVo-type recordings or movies. (from www.caring.com)

The show we began watching was the third series opener of "Downton Abby." We had watched all the previous episodes and were looking forward to the new season opener. Some fifteen minutes into the new episode Gregory became very vexed, angry, and was acting out. I turned off the TV (at least I knew to do that much) and was able to talk him down. Instead we tuned into "Big Bang Theory" and he was contented again.

I didn't realize what had happened but the lesson learned is that sometimes the person with Alzheimer's does the best they can to communicate their needs with you. One must realize that the WAY they communicating these needs may have nothing to do with the PURPOSE of their communication. It is a guessing game but if you are alert enough, you can win.

Now I have a DVD that Gregory loves to watch on the TV/DVD player in his room. It is a video of beautiful scenes of nature across the seasons, each backed with lovely, appropriate classical music. Now and then an animal enters the scene in its natural habitat. For example: a goat is climbing a mountain during winter while something from Beethoven plays.

Another type of video that not only Gregory, but it looks like every one at Lieberman loves, are the classic early musicals of the 60's and 70's: South Pacific, Flower Drum Song,  The Sound of Music, Carrousel, etc. The story line doesn't seem to matter but the individual songs are fun to watch, the people beautiful, and the story for the most part happy. I.E. NO VIOLENCE!

Care Conference

Gregory has been at Lieberman a little over three months and I have attended six Care Conferences to discuss his progress and needs. That is a meeting twice a month! Every time I take a long list of questions, concerns, and quandaries. 

Every time I come away from the meetings feeling listened to and content with the results. The meetings are always attended by the Head Nurse, the Social Worker, and depending on what we need to discuss, others. 

This time we were joined by the Nutritionist and the Restorative Nurse Supervisor.

• • •

BOLDFACE WAS ON CHECK LIST WHICH I BROUGHT TO MEETING.
Italics is what was discussed at meeting.

• • •

CHECK and CHANGE: How going? Records/regularity? (Being kept by RCAs) Hover over chair or in bed? (Depends on need)  When changed how cleaned? (Warm cloth and special soap) Is special soap used so rinsing doesn't affect his skin? (Yes) Is “tushie cream” used every time? (Yes)

The Restorative Nurse reported that Check and Change is going well.

Use of Urinal Training has not been successful as physically it is difficult to accomplish in time before he "messes" and Gregory is not able to help.

I reported that I am NOT confident that the Check and Change every two hours is going as well as I would like. When Gregory is discovered to be wet there usually is not enough time and/or staff available to get him changed so he ends up "sitting in it" for 3 or 4 hours until they can get to him. Often he sits in his urine and/or feces during meals. Also, from my observations, human nature causes the “check” part to not take place as often as necessary. 

I know that Resident Care Assistants (RCAs) are doing their best, that there are times when changing him is not possible because it takes four people to do so; the nature of scheduling, moving patients, floor needs, etc are getting in the way of Gregory’s care.

I proposed that staff should check for "messes" every hour NOT every two hours. That would not take more time or cause Gregory to "mess" more often but rather might bring his being changed closer to a manageable time through out the day. 

It was agreed that this will be done.

I proposed a way to resume Urinal Training. I purchased specialty pants which zip down both sides to the knee? Sometimes G does give signals that he needs to go and if one can get into his "area" quickly perhaps we can "save the day." 

I also purchased a woman's urinal box which seems to be angled more appropriately thus allowing Gregory to urinate while sitting. Also, we can try  a "penis friendly" urinal which I created using a collapsible, flexible silicone funnel attached to a water bottle. 

Staff will be trained to use the new idea as will Manny, Gregory's private care help.

A change in Gregory’s permanent RCA's for Days and Afternoons was made. Previously I had insisted that the RCA be in Gregory's wing and therefore closer to his needs. "Floating" RCA's have fewer people to take care of. Now that Gregory is not in as much need as he was the first month at Lieberman, proximity of RCA is not as important.

I think the new people will be better suited to meet Gregory's needs.

What kind of Active Assisted Movement will be given now that Gregory is no longer in OT/PT? By whom? When? 

Stand now and then? Sit now and then? Walk now and then?

Active Assisted Movement takes place every morning. Each resident works with a RCA for 15 minutes doing exercises like tossing a ball or leg and arm movement. Also, Manny will be trained so he can provide more activity and exercise throughout the day besides the regularly scheduled times in the morning.

We went back and forth on "standing, sitting, walking" regarding safety for Gregory as well as the staff. I fought for not "giving up" on him yet even though PT/OT thinks he must always be in the wheel chair and moved with the Hoyer lift. We compromised in that there will be a new screening and review by PT/OT. Also a new kind of wheel chair without foot pedals will be tried which might allow Gregory to "walk" himself around the unit.

CONCERN: There are many things that the Private Care Aid I have hired provides for Gregory between 11:30 and 5:30 and which relieves the RCAs of some responsibilities and allows them more time to be with their other duties. Some examples: Need to be shaved, to be transported from place to place, to be fed, to "entertain," calm, or otherwise occupy Gregory's time, Need to be supervised.

I need to feel that some of that time is being given back to helping Gregory. Right now his most important need is with bath rooming and being kept clean since he mostly has to "mess his pants." My concerns were heard and recognized as valid. With the above changes I feel this will be accomplished.

Current doctor reports? podiatrist? eye doctor? 

Any changes are reported, if no change assume everything is OK.

Adhesive on neck has really helped keep Gregory's neck strong.

No need for that now but muscle power in neck will be under observation.

Has he been showered in shower chair? Belly Button is full!
Teeth brushed. When? How often? By whom? Doesn't seem to be happening.

While shower chair discussed previously, not yet acted on. Will begin now. Teeth should be brushed twice a day. With new RCAs should happen now. I made myself available to "help calm" by being available for first few shower times.

More sir! Lunch and dinner, please. Sometimes a "regular" portion is enough for residents but not enough for Gregory. At times Manny or I ask for seconds if there are any left. Also, can he have more fresh fruit and vegetables. When does he get evening snack?

Evening snack consists of apple sauce or ice cream. 

Even before my mention, it was noticed that Gregory has lost some weight and has been put on mealtime "double portion." If Gregory is ever still hungry, Manny should ask for seconds. If none at station on floor, worker will go down to the main kitchen. There is ALWAYS more food available!

We talked about adult life time usual 155lb weight, his recent developing a "little belly" 180lb weight, and his current 167lb weight. Will keep an eye on what his NEW optimum weight might be. 

Will add more fresh fruit and veggies. 

In touch with Psychiatrist who has been following Gregory? Psychiatrist who chatted with Hannah about what to expect in general with Young Onset Alzheimer's patients.

Done.

• • •

It continues to amaze me how wonderful the care and concern for Gregory is. Often the staff is "ahead" of me when a concern develops. They are open and willing to try my suggestions but also know when they need to "educate" me on the realities of Gregory's situation. I cannot say enough about how wonderful each individual person is.

Oneg Shabbat

Oneg Shabbat,  (Hebrew: “Joy of Sabbath”), informal Sabbath (or Friday evening) gathering of Jews in a synagogue or private home to express outwardly the happiness inherent in the Sabbath holiday. Now more social than religious, the group entertains itself with music, drama, community discussions, lectures, or the singing of religious melodies—all in keeping with the biblical injunction, “and call the Sabbath a delight” (Isaiah 58:13). Usually refreshments are provided to complement the congenial atmosphere and perpetuate in spirit the Talmud’s recommendation to eat three full meals that day.

Every Friday at Lieberman Oneg Shabbat is celebrated. All of the residents (Jewish and not Jewish) gather in one wing to sing Jewish songs, have grape juice, and eat either Challah or sponge cake. 

I sang as loudly as I could to add to the festiveness of a somewhat absent audience. While helping to collect the empty shot glasses, I wished each person "Shabbat Shalom" or Good Shabbas. I was repaid with many smiles. I continue to be amazed (and am amazed that I say this fairly often) that the Community on the Fifth Floor at Lieberman really makes a difference to everyone who lives there, to those who work there, to those who visit there, and to those who love those who live there!

Joy is in the Air

Yesterday, after visiting Gregory for dinner, I experienced Joy. 

He was responsive, in a good mood, and happy. We spent time together over dinner and then watched his DVD of seasons backed with classical music, very comforting. 

On the way home I stopped to pick up dinner at my new favorite Chinese "hole in the wall" carry out restaurant. It is located on Golf about half way between Gregory and home. 

As I was walking back to the car, carrying my bag of Fried Rice, Shrimp Egg Fu Young, and Mongolian Beef; I sensed something different. 

Was it the feel of Spring in the air? Maybe. Was it the smell of the freshly cooked food in my bag? Maybe. Was it that my back (which has been out since Easter) finally had begun to feel better? Maybe. Was it the good visit with Gregory? Maybe.

Then I realized what I was sensing was Joy. Everything was good and in its place. And I was happy and content. And my feet seemed to be hovering above the pavement on which I was walking and my heart was soaring through the clouds, the blue sky, and the setting sun.

BLOG

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

Here and Now Complications

My life right now, who I am, is so complicated with such mixed emotions. I asked my therapist how I could be feeling such dichotomous emotions and he said the answer is "Wisdom." 

Emotions are not separate but rather opposites along a continuum. In and of themselves, emotions are not good or bad. They just are. To be complete we need to acknowledge all of our emotions while trying to keep them in balance. Allow for happiness. Allow for sadness. Try to stay somewhere in the middle. 

I love my solitude, I miss Gregory. I love having the condo to myself, I wish he was here with me. I like making decisions by myself, I have no one to rely on. I feel such joy at the same time I feel such despair and loneliness.  

If I look through Gregory's eyes, I am at peace. When I look through my own, I am at turmoil. I have always had a life of my own and separate friends and personal goals/ambitions but I would love to be able to share their progress with Gregory like I used to. 

I yearn to cuddle in his arms at bedtime. I miss a good FUCK. I miss a good back rub. I miss sharing my feelings after watching a movie. I miss eating half my dinner at the restaurant and then switching and enjoying the new tastes in his half. I miss his help carrying the groceries in from the car. I miss his company while waiting in the lobby for a doctor's appointment. I miss his patience with me. I miss his supporting and encouraging me to be who I am.

I am doing a fairly good job of living in the here and now like Gregory is doing, know in my heart that HERE and NOW  is all we really have, but find myself wondering if I should be dealing with or thinking about the future. To be honest I cannot imagine a future.

Blessings

Suffering

LEARN MORE | BOOKS AND AUDIO | THE PEMA CHÖDRÖN FOUNDATION

April 23, 2014 THE OPPOSITE OF SAMSARA The opposite of samsara (the cycle of suffering) is when all the walls fall down, when the cocoon completely disappears and we are totally open to whatever may happen, with no withdrawing, no centralizing into ourselves. That is what we aspire to, the warrior’s journey. That is what stirs us: leaping, being thrown out of the nest, going through the initiation rites, growing up, stepping into something that’s uncertain and unknown.

This sounds like "Hard Love" advice but often we are presented with situations in which all the walls do fall down. So perhaps the advice is to create your "Warrior's Journey" yourself, instead of waiting or it to happen. More Buddhist like might be, "If the Warrior's Journey presents itself, open your arms and embrace it with love."

Just Not Fair

Periodically, I find myself uttering "Just Not Fair" and while not fully sure what I mean, it makes sense to me and perhaps lets me move on from the reason why I said it.

This weekend, knowing that Gregory was fully covered by helpers Manny and Alaksh, and while knowing that he is always very happy to see me, he would probably not realize my absence; I decided to go to Battle Creek to visit his family over the Easter weekend.

Besides getting to see the family, I looked forward to my first getaway in over a year! Just knowing I could get into the car and take off, with relatively no worries, stop when I wanted to for lunch, antique shop along the way, and get to spend time with people I love was wonderful. The food was good (Colleen is a great cook) and I slept well. Shared a lot of conversation with everyone and laughed a lot.

But driving the four hours and passing so many places that Gregory and I used to comment on or stop at found me muttering, "This is just not fair!" Visiting without him at my side, even when in the past it was getting more and more difficult, is something I would love to be able to do again. Just not fair that Gregory will never again be able to go to Michigan to visit his family. Just not fair that we will not be able to stop in Michigan City at the Antique Market Mall. Just not fair that we will not be able to visit "Chocolate World."

I find that when I am able to separate now and then, I do well. When I do not think about Gregory when I am without him, I do OK. When I do not think about the rest of my life and the life we had together while I am with him, I do OK. But when the two cross over, the tears rise and at times overflow.

When I am at Lieberman giving him a manicure, or watching South Pacific again (and again,) or helping him with dinner, or just holding hands; I can hold my own if I do not think of home, my current life, or the past.

When I am at home I enjoy the solitude of the condo; the ability to easily take care of myself without having to do much planning; choosing when, what, and where I want to have a meal; I can hold my own if I do not think of Gregory and Lieberman.

When I am truly able to live in the "here and now," much like Gregory is able to do, I can hold my own.

But over the Easter weekend, I found myself saying "This just isn't fair" a number of times as I helped bring family up to date on Gregory's situation, at the Easter dinner so lovingly and beautifully prepared and served, when I rolled over in bed in "our room" at Mark and Colleen's realizing that Gregory was not there with me.

There are so many "This just isn't fair's" that I could make along list. But I choose not to do so here or to do so now because I would not be able to hold my own and I need to!

Passover

Passover.

Holiday of leaving slavery

And gaining freedom.

At Lieberman,

Celebrated with some 200

Residents and their families.

Residents mostly compromised

Mostly distant

Mostly towards death.

Yet the familiar

Traditions and tunes

Created sparks of life.

The taste of the food

Sweet grape wine

wetting the dry matzo.

An aura of love

And life

Pervaded the room.

RIP Eddie Goldberg

Eddie Goldberg was a feisty 99 year old who lived on Gregory's floor and shared a meal table. Eddie was quite alert and aware although through a very narrow range of interaction

"What about me?" he would ask every time someone walked past with a plate of food. "I'm Eddie Goldberg, nice to meet you," he would declare to you. When asked how he was doing his answer was always, "Fine thank you very much."

One day when Eddie was feeling kind of grumpy and down, I reached over and held his hand. He held it back with love, affection, and meaning and his grumpiness disappeared. We held hands throughout the entire meal.

Eddie began to fail quickly after a possible stroke. He spent a week in the hospital, returned to Lieberman, and seemed to recover a little. He lost his feistiness and seemed a little more distant than before.

Yet he continued to respond to "How are you Eddie?"

"I am fine, thank you very much."

Eddie passed away early this morning. He will be missed. Fitting that he left us on Passover, not because of the "Slaying of the first born" for which the holiday is known as the Jewish people escaped from slavery in Egypt but more for the "Rebirth and Passage from Slavery to Freedom!" RIP Eddie Goldberg. And thank YOU very much!

This is the picture that hung. for identification purposes,

in the frame outside Eddie's Room.

A Love Encounter?

When I read about Justice Sandra Day O'Connor, who retired from the Supreme Court in January 2006 at age 75 to take care of her husband, John, who had Alzheimer's disease, and the fact that she was "OK" with his "falling in love" with another woman at the memory care facility, in my mind and imagination I concurred. She talked about being happy that he had someone around at the home all of the time with whom to stroll the halls, watch TV, share dinner, hold hands.

A similar occasion happened with Gregory and me the other day and my first reaction was, "I do not want him to fall in love with a haggle toothed, old woman with dementia. " As soon at that thought crossed my mind I had to laugh at my bias. But the difficulty goes deeper, as the Social Worker and I discussed.

Here is the story. First report I received was that a new resident had taken a fancy to Gregory and during morning activities was holding his hand. My first encounter with her was later at lunch. I did not like her at once. She was aggressive, demanding, pushy, and "old, haggle toothed and demented" which turned out to be besides the point.

She approached our table, walking her wheelchair towards us, saying in a loud voice, "Hi Gregory." Gregory did not respond as he often is not available to these around him and he was concentrating on eating his lunch. As she got closer, she more aggressively repeated "Hi Gregory" in a tone that was expecting and demanding a reply. 

I intervened, "I don't think Gregory can talk right now as his is involved in eating his lunch." 

"Oh yes he can!" she demanded. I repeated the exact words a second time and she repeated her exact words a second time. This went back and forth at least four or five times, as if we hadn't heard each other.

With dementia patients, one's form of communication is different from the norm so while it may have been weird to encounter this woman's and my interaction, I think I reacted well.

Finally, however, I said "You cannot bother Gregory right now!" and she left the dining room. End of encounter.

Later that day I was with Gregory at dinner time. The Social Worker asked me if she could have a word and we stepped out into the hall. "There was an incident with Gregory this afternoon. The new woman, who has taken a fancy to Gregory, took his hand and was rubbing her breast with it. 

One of the Resident Care Assistants noticed, separated them, and came to me. We had a meeting with all of the staff this afternoon about the incident. In itself, these things happen, but because Gregory cannot advocate for himself, we will advocate on his behalf. 

The staff will make sure that the the woman and Gregory will not come in contact with each other. Also her room will be moved to another wing (currently her room was two doors down from Gregory's.)

I thanked her for the staff's being on top of the situation, assured her that I understood the situation and was not upset, and was impressed with the idea of the staff advocating on Gregory's behalf.

So I think that I am still OK with the possibility of Gregory's finding someone he likes/loves, even if it is a demented older woman. What bothered me was that this woman was mean, aggressive, and inappropriate in the way she was meeting her needs. Gregory could not defend himself and I did not want her hassling Gregory. 

With all this said, I now say this honestly if not somewhat tongue in cheek: If Gregory is to fall in love with someone else, I at least want her to be a nice, kind person whom I can approve of. I do not care if they are the same religion and I do not care if there is a great age difference, I only want my Gregory to be happy.

There are millions of stories in the big city that is the closed world of dementia and The Lieberman Center and this was just one. Lieberman once again proves itself to be a wonderful environment for Gregory. My heart is light. Another day, another story.

Dinner Time at Lieberman 4/11/14

I told Gregory that I cancelled my dentist appointment because I wasn't feeling well.
"What wedding?" asked J, who sits across the table.
"No, I just told Gregory that I cancelled my dentist appointment."
"Oh, you still have those."

"Shut up, FUCK you!" A shouted for no apparent reason.

"Help me, help me!" A woman loudly shouted through the entire meal.

"I want to go to the bathroom, " spoken in a loud voice.

"Stop yelling," aimed at no one in particular and everyone in general.

"You didn't eat your vegetable, B." I said.
"I'm watching it." replied B.
"What are you watching it for?" I asked.
"I am waiting for it to move." replied B, "One move and it could jeopardize us all!"

"Be quiet," a woman aimed at no one in particular and everyone in general.

"I'm stuck here. How do I get out?" inquired another woman.

"Who do I pay for the meal? I am confused." asked someone nearby.

"I have to pee!" urgently stated.

Still no background music for this Fellini movie!

Lie Down and Die or Hunker Down and Keep Living

"Lie Down and Die or Hunker Down and Keep Living." That is a saying that Gregory and I adopted early after his diagnosis with Alzheimer's some 11 years ago. Now it is time for me to renew that saying for myself as Gregory no longer has this fight. He is content. I hope he can continue to be so.

When I am with him at Lieberman, if I think about the man Gregory used to be as recently as last Christmas, or if I think about Gregory while I am at home and compare that to the man he used to be as recently as last Christmas, or if I spend too much time thinking about what our relationship had been like over most of the last 39 years, or if I by chance catch a photograph of our earlier days; I might as well stop writing this post and sob and scream and dash my body against the walls and  throw myself into bed depressed not to emerge for days or weeks, if ever.

Maybe some day I will be able to think more about Gregory and my past, and revel in the memories of our beautiful time together. But for now I need to focus on the here and now, as Gregory seems to be able to do, and enjoy our beautiful time together now, today, here and now.

It is not easy seeing him in his wheel chair: immobile, unable to toilet himself, unable to feed himself, now and then tremoring, needing to concentrate on how to get the water through a straw or bite a piece of sandwich, not being able to use words to share his thoughts, crying unexpectedly, so focused on some far off object or through that even I cannot get a response; all this surrounded by 70 to 100 year olds who are worst off than Gregory and sometimes in the midst of their cries and shouts and anger and confusion and shit smells and food messes clinging to the napkin tucked around their neck.

But what I am able to see, so this is what I focus on, is a community in which Gregory feels safe, loved, taken care of, provided for, having limited wants and needs. Gregory is past the point of clinging to fears, unnecessary expectations, the past or future, holding on to the need for "things."

What I am able to experience is how he brightens up when he sees me or a visitor, how he is able to smile and tell me he loves me, how he tells Pat, "You are beautiful." or Cheryl, "Oh, it is you!" or Jan, "Oh wonderful." or me when at dinner I told him I needed to talk to the Social Worker and that I would be right back, "Oh that would be lovely."

I look forward to his hugs and with some delay in sound his large smacks of a kiss on my cheek. We can hold hands for hours and watch "South Pacific" over and over again on the TV in his room. I can offer him a piece of chocolate or a cookie and he is delighted. I can take my leave telling him I will see him tomorrow and he will acknowledge with an, "OK."

For now this is all I need and I relish each moment because I know that even these minimal interactions will disappear. But what I can hold onto is our love for each other, maybe at a later date our memories, and to the knowledge that all of his needs are being beautifully taken care of by a huge team of people who care. While Gregory's illness has gotten worse, his situation has gotten better!

Spoiling Myself

Gregory's facility, The Lieberman Center, is approximately two minutes away from an IHOP (International House of Pancakes.) Lately I have been visiting the establishment as a way of being mealtime good to myself before or after a visit to Gregory.

Sing-A-Long

You had to be Jewish to sing along but the idea was lovely. Some 60 Jewish students entertained some 300 residents at yesterday's Lieberman Sing-A-Long. The event was held in the community room. The music was Passover oriented and while for the most part it was the students singing, the residents did clap and some did rock along to the music.

I will be honest in that I used to think these kind of pretend events were pathetic. Noisy. People not aware of their surroundings. An attempt at bringing life to the dead. I do not mean to be mean, just honest.

Now, I enjoy these event whole heartedly. Each person IS aware in their own way at their own level. The noise is inevitable but does not distract. The music did bring life to the dead and much more.

In the future, I will work at not judging before I am an integrated part of an experience.

https://soundcloud.com/mhorvich/dyano

Senior Citizen Lip Dub

Made my heart sing:
http://lipdubtube.blogspot.com/2011/07/clark-retirement-community-lipdub.html

At The Lieberman

On my way home from visiting Gregory, the front desk receptionist commend on how she appreciated my happy demeanor.