FOR GREGORY

Periodically I will add posts here if the sources provide additioanl informaiton on how to think about and deal with Dementia/ Alzheimer's Disease.

PLEASE NOTE:


SCROLL DOWN FOR TEXT and BIBLIOGRAPHY from DAI WEBINAR 2/22-23/2017. You can also find this information on my website: www.horvich.com


Even though this blog is now dormant (see info below) there are many useful, insightful posts. Scroll back from the end or forward from the beginning. My guess is that you could spend a lot of time here and maybe learn or experience a thing or two about living with and loving someone with Dementia/Alzheimer's or maybe come away with the feeling that "you are not alone" in YOUR work with the same!


• • • • •


THIS WAS THE FINAL POST TO THIS SITE BEFORE IT WENT DORMANT.


Happy New Year 2016. With a new year comes new beginnings and sometimes endings. If I am personally progressing and if I am doing a good job in my grieving Gregory's death; if I have been able to learn my lessons in living and loving someone diagnosed with Dementia/ Alzheimer's; if I am to get on with my life ... I need to bring this Alzheimer's blog to an end since my writing has been dealing less with Dementia/ Alzheimer's and more with life after Dementia/ Alzheimer's.


Of course, I will always continue to work for and support fair treatment on behalf of people with Dementia/ Alzheimer's and may post here from time to time. Also, there are many wonderful posts here through which you may browse.


With this change, I will continue and reinvigorate my "michael a. horvich writes" blog which deals with grieving Gregory's death, life lessons, personal experiences, observations, memoirs, dreams, and humor in essay and poetry, as well as an attempt now and then at sharing a piece of fiction.


Please follow me there by clicking http://mhorvich.blogspot.com or click the link located on the right side of this page.


Finally, COMMENTS are always important to me and you can still comment on the posts on this blog! CLICK "Comments" and sign in or use "Anonymous." Leave your name or initials if you wish so I'll know it's you? Check the "Notify Me" box to see my reply to you.



Wednesday, February 26, 2014

Treading Water

I visit Gregory every day at the Lieberman Center for at least two to three hours.

I have seen a number of plays, operas, and musicals with friends taking my other ticket.

I am finishing up my second volume of poetry which will be ready for publication very soon.

When the next volume of poetry comes out, I am planning a poetry reading for the condo's book club.

I am going through the condo and making changes to reflect my living here by myself.

Slowly working my way through the condo getting rid of stuff that I no longer use or need.

Thinking about what colors I might paint the various rooms.

Doing laundry, grocery shopping, some cooking but not as much as previously.

Getting good nights of sleep.

Playing with the kitties as well as grooming them, feeding them, and cleaning their kitty litter every morning.

Thinking on and off about future adventures around Chicago, future trips and travel.

Will be having guests spend weekends here with me.

Discovering new restaurants not only in the neighborhood but in the Chicago area.

Catching up on reading. Both fiction and non-fiction as well as unusual art books.

Continue to meditate every day, do a lot of reading on Buddhism, and am thinking about going on some kind of personal retreat.

Thinking about the next mini-museum: "MCM" or Michael's Closet Museum which will be a traveling museum show that will occupy an abandoned or loaned closet, floor to ceiling, back and side walls, nicely lit and organized, in some cultural building like an existing museum, or a library, etc.

Continuing to create jewelry and "Small Greeting Gifts" for my booth, Michael Beads, at The Galleria in Evanston (just across from the condo.)

Am catching up on TV: Downton Abby, House of Cards, Sherlock, Big Bang Theory, Mystery, etc.

Would like to again begin sending out my manuscript, GYROSCOPE: An Alzheimer's Love Story, to see if I can get it published.

Have an authentic turn of the century, Victorian Opera House Puppet Theater that my friend Eric gave me (he purchased it at the Chicago History Museum's Attic Sale some 25 years ago.) I want to create a story using the theater and "props" I have around the house by photo documentation.

But you know what? With all these goals, projects, activities, and fancies ... I feel like I am just treading water. Day at a time. Trying to get used to my new life without Gregory.






Joy

... and boy have Gregory and I had our share of JOY! Even in the current situation JOY sneaks through more often than not!

http://www.abraham-hicks.com

Tuesday, February 25, 2014

A Testamony

This post is a testimony to NOT worrying about the future. I know that one has to experience on their own to learn lessons, telling doesn't help all that much, but maybe a few words might help you.

As Gregory's Alzheimer's progressed I spent a lot of energy not worrying about the future, trying to not worry about the future, trying to not worry about not being able to not worry about the future, and of course ... worrying about the future.

I did a pretty good job of not worrying and living in the here and now but boy, in looking back, it was really worthless and a waste of energy worrying about the future because now that the future is the present, it isn't at all like I imagined it would be and in some ways not as bad!

First of all living in one's imagination is always worse than living in reality, no matter how bad reality may be. The imagination fires the unknown, the extremes, and at times the creative vs the real pain and suffering that might be (might have been or is.)

Gregory declined so rapidly during the month of December and January that the future was on us before I knew it. His anger and violence - here. His incontinence - here. His not sleeping at night - here. His not knowing who I am - here. His not being able to eat by himself - here. His not being able to dress or undress himself - here.

Almost overnight all the difficult signs of Alzheimer's that I had been trying not to worry about were here - worrying or not. The small amount of worrying that I did, didn't help, the future was here anyway. Prepare for the future? Yes. Ask questions about the future? Yes. Learn about what the future might bring? Yes, as long as it doesn't depress you too much. But worry - WASTE OF ENERGY.

It will get a lot worse too, but I am not worrying about that because Gregory is being well taken care of at The Lieberman Center. Will it be difficult for me to watch him get worse and worse? Of course. Will I cry when I think of how much I miss what he used to be and what we used to be together? Of course. But worry? No more.

Because I was able to take care of myself, be alert, educate myself, avoid too much worry, avoid too much depression, etc I have been able, proactively, to provide a situation for Gregory in which he will receive the best possible care for the rest of his life.

It feels good to have no worries. For sure I know they will not help. But I can continue to love this man and provide for him as needed, and visit almost every day as long as it makes a difference to him (and to me.)

When I got the call that he had fallen on his knees on the first night at Lieberman I didn't worry. When I got the call that he had fallen out of bed, cut a two inch gash in his head and given himself a shiner, and was on his way to the emergency room; I didn't worry. A week later, when I got the call that he was again on his way to ER, this time having suffered a Grand Mal Seizure, I didn't worry.

I regrouped, got dressed and met him at the ER, held his hand and cooed "I know" over and over. Loved him even more. Felt bad that he was hurting. Wished that I could make it all go away ... but guess what ... I was OK and I didn't worry about the moment (he was being well taken care of,) I didn't worry about the future (I accept that it will continue to get worse,) and I didnt' worry about how I would take care of him (I now had a team of dozens and dozens of people helping me make the best possible decisions for Gregory.)

I only had to be strong for him and myself, make sure that the hospital staff clearly understood that Gregory and I are not afraid of death, had discussed that, and wanted NO heroics, NO chest pounding, etc. I always ended by making sure they knew, "If he is dying, hold his hand ... NOTHING MORE."

In the end, what is there to worry about? When you have seen death approach and leave with your parents, with your friends, as it slowly but surely takes away the person you most love in the world, and when you accept that eventually death will come to get you ... fear looses its edge. Nothing to worry about. Be happy!


Floral Philosophies

Shared by my friend Theresa. FLORAL PHILOSOPHIES: The photos are great, but the philosophy is even better

<ATT00016.jpg>
We never get what we want,
We never want what we get,
We never have what we like,
We never like what we have.
And still we live & love.
That's life...

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The best kind of friends,
Is the kind you can sit on a porch and swing with,
Never say a word,
And then walk away feeling like it was the best conversation you've ever had.

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It's true that we don't know
What we've got until it's gone,
But it's also true that we don't know
What we've been missing until it arrives.

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Giving someone all your love is never an assurance that they'll love you back!
Don't expect love in return;
Just wait for it to grow in their heart,
But if it doesn't, be content it grew in yours.

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It takes only a minute to get a crush on someone,
An hour to like someone,
And a day to love someone,
But it takes a lifetime to forget someone.
.
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Don't go for looks; they can deceive.
Don't go for wealth; even that fades away.
Go for someone who makes you smile,
Because it takes only a smile to
Make a dark day seem bright.
Find the one that makes your heart smile!

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May you have
Enough happiness to make you sweet,
Enough trials to make you strong,
Enough sorrow to keep you human,
And enough hope to make you happy.

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Always put yourself in others' shoes.
If you feel that it hurts you,
It probably hurts the other person, too.

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The happiest of people
Don't necessarily have the best of everything;
They just make the most of everything that comes along their way.
Happiness lies for
Those who cry,
Those who hurt,
Those who have searched,
And those who have tried,
For only they can appreciate the importance of people
Who have touched their lives.

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When you were born, you were crying
And everyone around you was smiling.
Live your life so that when you die,
You're the one who is smiling
And everyone around you is crying.

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Please send this message
To those people who mean something to you,
To those who have touched your life in one way or another,
To those who make you smile when you really need it,
To those that make you see the brighter side of things When you are really down,
To those who you want to know
That you appreciate their friendship.

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And if you don't, don't worry,
Nothing bad will happen to you,
You will just miss out on the opportunity
To brighten someone's life with this message...

Saturday, February 22, 2014

Expectations

How many tears,
And poems about tears,
Arrive unexpectedly?

A word, a photograph,
A comment, a memory,
Triggers unexpectedly?

This disease, this horror,
Ten years in the making,
Arrived unexpectedly.

Ten year in the making,
Yet the current events,
Still arrive unexpectedly.

His violence and threats,
Uncontrolled panic,
Not expected.

His mishaps, incontinence,
Falls and seizures,
Not expected.

Long term facility care,
Alzheimer's unit placement,
Not expected so easily.

His living only in the moment,
No questions about why,
Not expected so easily.

His calm and contentment
Returning and maintaining,
Not expected so easily.

No longer mobil, in a wheel chair,
Tremmors, weakness, bad posture,
Not expected so quickly.

Inability to feed himself,
Or position himself comfortably,
Not expected so quickly.

So many "Never Agains."
So many "Forevers"
Until the final breath, death.


Friday, February 21, 2014

Contentment

According to Nancy Rosen on visiting Gregory.

N: Do you like it here? (Lieberman)

G: Yes

G: It's enough

Thursday, February 20, 2014

Love

To open your heart to great love is to open it to great sorrow.
But would you keep it so tightly closed?

Wednesday, February 19, 2014

Gregory

May be a little shocking if you haven't seen Gregory in a while but these photos, taken by Nancy Rosen on a recent visit, show Gregory happy, alert, engaged.

He is in this special wheel chair  because since his seizure, he is unable to walk steadily on his own. Also he can nap and not worry about falling out of the chair. Regular wheel chairs do not work because he is so tall! 

He gets Physical Therapy and Occupational Therapy five days a week and has been progressing nicely. Not sure if he will regain the strength lost while in the hospital but hopeful.

My heart is light!





Heart Advice

Understanding two terms is necessary in understanding this week's "Heart Advice." It has implications, if read carefully, for the person with Alzheimer's as well as those who love him.

Prajñāpāramitā in Buddhism, means "the Perfection of (Transcendent) Wisdom." It is a central concept in Buddhism and its practice and understanding are taken to be indispensable elements of the Bodhisaatva Path.

A Bodhisattva is an enlightenment being. Traditionally, a bodhisattva is anyone who, motivated by great compassion, has generated a spontaneous wish to attain  Buddahood for the benefit of all sentient beings.


Love

To open your heart to love is to open it to sorrow.
But would you keep it closed?

Tuesday, February 18, 2014

Care Conference February 11

These notes were from the fourth "Care Conference" that took place last week. A number of posts have reflected what has been going on since that meeting.

I find that by keeping running notes on my computer I am able to remember (and address) all of the issues that come up between conferences. I make a copy for each person attending which facilitates the discussion.

Usually attending are the head nurse, social worker. Sometimes attending are dietitian, activities director, physical therapist. At times various building supervisors attend. Each person mentioned above are for the fifth floor and each person has an entire building supervisor.

Many of the items listed in this set of notes were changed drastically or no longer an issue because of Gregory's seizure. For now he is in a wheel chair until (or if) he regains his strength and becomes mobil again. Because he is not mobil he ends up messing his pants and has to be changed with the help of four people, who move him to his bed and clean him up.

He needs help feeding himself and I have hired a man to be with him from 11:30 - 5:30 (which covers both lunch and dinner.) The additional help was requested by Lieberman but I also think it is a good idea. That way someone will be with Gregory on a one to one for at least part of the day helping him, providing activities and distractions. 

I have been visiting for two or three hours a day but once and a while I take the day off. Part of what the following list shows is how helpful Lieberman is, how much I have to communicate in my new role as Secondary Care Giver, how people in Gregory's position need an advocate, and in many ways points out how the situation for me is different but none-the-less difficult.  

MEDICATION
When moved he is in pain?
TED socks/swelling?
More than one pair?
Fall mat?
Plug cover?

Chocolate Pudding
Crushed

Dilantin
Dilantin Levels Test?

Flu Med?
Pain Med?

Fluocinolone Oil?
Tushie Rash Cream?
Cordran Tape (I apply?)

Tumeric
Vitamin E
Ginko Biloba
Namenda 
Aricept (Day Time)?
Liquid Vitamins
Liquid Minerals

PRN Haldol
PRN Xanax (Alprazolam)

TOILETING
Medicine Chest Lock
New toilet bars?
Try every few hours
Before or after meals
Plastic Urinal Box?
Record Keeping
Attempts
Successes & accidents
Bowel movements
Paper pants changed?
Rash/irritated bottom?

RESIDENT CARE AIDE
Eegee only w/ Greg?
Permanent AM/PM?
Non-Floating?

GROOMING
When?
Shaving
Face Moisturizer?
Deodorant?
Body Lotion?
NOURISHMENT
Finger food vs extra help
Fresh vegetables
Fresh fruit
Snack in PM
Prune Juice w/ bkfst

OT / PT (Medicare?)
How often?
Aimed at balance & walking?

SKILLED NURSING (?)
Medicare 100 days?
Continuation determined?

NEW LONGER BED
When?

SLEEP HABITS
Wake
Naps
Bedtime


Sunday, February 16, 2014

Leaning Left

Thanks Jan and Jake.
http://connectere.wordpress.com/2014/02/16/gregory-leaning-left/

Grief

Time will help heal but never erase the beauty and the sadness that is life. 

Joy and Sorrow

Reporting on a number of experiences for me this evening at Lieberman.

When I arrived at Lieberman this evening, Gregory was having dinner (with Manny's help.) Greg was alert, smiling, eyes wide open, head sitting much more comfortably on his shoulders (lately he has been having supporting his head.) I was so happy and joyed to see him probably the most together since his seizure. He talked a little, responded to questions, smiled, ate well.

Meanwhile Eddie, who is a table mate of Gregory's, was a little grumbly. I tried to engage him a little and he responded meanly. I reached over and stroked his hand. He calmed down a little. I held his hand through the rest of my time at the table. He held my hand with sincerity, what ever that might look like expressed by a 99 year old man with advanced dementia. He calmed down and seemed to thrive on the touch of another human being.

I found out that "B," the female at the table who told me it was none of my business how many times she and her husband had sex (even thought I never asked) was an actress. We talked about theater a little and she perked up as well. "Now I am retired and that is good." she told me with a smile.

New to the table is "J." Just arrived in the area to be closer to her son "H" (a gay man who was there with his lover "R.") She is beautiful in her old age, sophisticated, kind, and friendly. At the end of the meal she told "H" to make sure he left a nice gratuity for the waitress. I have to admit, it made me feel good to have other gay men with me in that environment.

Turns out that "H" is an interior designer/architect and asked the name of Gregory's firm. I told him a little bit about the kind of work Gregory did and boy did Gregory perk up. Greg said me, "Tell the story," so I continued telling.  I almost cried right there. I have been telling both Gregory and my stories for many years now but since Christmas and his drastic down turn I not only haven't had to tell his stories but had almost forgotten they exist.

There was a wonderful camaraderie among the people sitting at the dinner table this evening, some satient and some less so. At one point I turned to "H" and said, gesturing to myself, "This is all a front. But it feels good."

Later, after Manny had left, Gregory and I were in his room watching TV. Gregory started getting upset in the way that I have identified as his needing to go to the bathroom. I tried to calm him down and asked, "Can I talk to you?" He looked at me. "Since it is so difficult for you to get up on your own, there is nothing for you to do but pee or shit in your pants. You should not feel bad about that. They will clean you up and you'll be fresh as a daisy again.

He grabbed his penis area saying, "Oh no not this again." I stroked his hand and purred "Just let it go. Don't worry about messing yourself. Just let it go." Slowly he calmed down and I could smell the results of our conversation.

I mentioned to the passing aide that Gregory needed to be changed and when might that happen? I have learned not to be too insistent and to not only recognize that they have so many others to attend to but let the aides know that I recognize how much work they have to do and that they cannot do my bidding instantly, no matter how painful it is for me to know Gregory needs to be changed.

While we were waiting for help, the nurse arrived with Gregory's medications. She was impressed that I spoke Spanish. She is from the Philippines and while she doesn't speak Spanish fluently, it is a common language for many Philippinos.

She shared her sadness at what Gregory has been going through at such a young age but assured me that Lieberman is one of the best places she has ever worked at and over the years she has worked in everything from public assistance facilities to high end suburban places. "Lieberman is the best," she said again.

I showed her the photographs of Kai and Paz, our two Philippino/American God Sons. She commented, "What an honor that must be for you to know that people you care for in return love and trust you so."

In ten minutes or so, Gregory's aide and the one I caught in the hall came in ready to help. There was no one else readily available so I said I would help, "You just need to tell me what to do so I won't interfere." I think they appreciated that.

It was at least a three person job to get Gregory from  the wheel chair into bed and not without a shout of what? pain? fear? disorientation? from Gregory. But I knew from past experience that whatever it was, it would be gone and forgotten shortly when G was all dry and clean and in bed ready for bedtime.

So there is Gregory in bed, a male and a female aide helping him and his lover as well. Gregory, nude as a j-bird while the male is cleaning him up with a wet towel. Gregory began to cry. From what embarrassment? Who knows. I leaned over and hugged him and again purred, "No no no. No need to get upset. Everyone here wants to help you get comfortable. Everyone here loves and cares for you. It is not your fault. No need to be upset.

And Gregory did calm down, stopped crying, and just was. Once he was dry and in his sleep shirt, with blanket nicely pulled up around his chest, he was happy and back in the moment. I sang him a lullaby and he closed his eyes and dozed off.

Wish that I could just be in the moment and leave my what? pain? behind!

Friday, February 14, 2014

Windshield Wipers

Did you know that when you cry, your tears splash your eyeglasses?

Happy Valentine's Day




Happy Valentine's Day


This will be the first Valentine's Day in 39 years that I have not planned something special for Gregory. No, I am lying. Yesterday I discovered a new bakery near Lieberman called "Nothing Bundt Cakes." They sell bundt shaped cup cakes called buntinys, individual cakes called bundtettes, and small-medium-and large bundt cakes. Every day they offer approximately one dozen different flavors.

So I bought a chocolate, chocolate chip bundt cake to take to Gregory when I visit today. I will also pick up one red rose for him. He will be with Manny from 11:30 - 4:30 (his new helper) but I will drop by around 3:00 to spend an hour with him.

Last night I had an awareness, maybe because I had been thinking about Valentine's Day. The awareness is that I LOVE GREGORY. I had an image of him bearly able to smile at seeing me, sitting in his oversized wheel chair, tipped back for comfort, neck pinched to the left (PT is working on this,) having just been cleaned up from a pee and poop in his pants, food stain on his shirt, too large blue jeans, hands trembling, dozing on and off while I offered him a piece of broken in half animal cookie and some milk in a box through a straw.

I love this man as he is. I no longer love him as he was because that is no longer what he is. In fact, to help keep my emotions in tow, I have not been allowing myself to think too much about the past, about the wonderful times, about our wonderful relationship. I have been working very hard to remain here and now, in the present, in the moment in fact.

And I realized that I love this shell of a man, this remnant of a man, this handicapped man, this mentally deficient man. I love my Gregory with all my heart. No matter how much of him is gone, I love him even more. Maybe MORE THAN EVER!

What is it that I love about him, I do not know for sure. But the essence of the man I have loved for over 39 years still exists in him and in me. The love and dedication and support and loyalty and responsibility we had for each other continues as long as I am able to hold up my half of the bargain. Happy Valentine's Day Gregory. I Love You!

Thursday, February 13, 2014

Symmetry—A Palindromic Film

Symmetry—A Palindromic Film

This post is based on a post by my friend Jan.
To visit Jan's post Click Here: Opens in a new window. 




Why is the past different from the future.
Because the laws of physics are time specific.
If clocks were to go backward instead of forward...

Palindrome.
palindrome |ˈpalinˌdrōmnouna word, phrase, or sequence that readsthe same backward as forward, e.g., madamor nurses run.

Not nice to remind a person.
I think, at least today
I think,

I would like to have time reverse
Reverse for me.
For us.

Tears. Unexpected. But not your fault.
Unexpectedly, tears hide and hide and seek.
Gregory's Grandfather on his mother's side: Otto.



Tuesday, February 11, 2014

OT/PT

Occupational Therapy and Physical Therapy. Gregory will be getting both, five days a week, for the near future. The goal is to help him gain back some of his strength after a fall, a two inch gash on the back of his head and a bruise on the forehead, a Grand Mal Seizure with new medicine that causes drowsiness for a while, and a bout with the Flu with medication that has been compared to "being hit by a truck."

He is at greater risk for falling out of a chair because he is so sleepy so they put him in the chair pictured. He can easily be moved around and can doze off without being a risk to his safety. Most regular wheel chairs are too small for Gregory's height, he isn't strong enough to hold his legs up while being pushed, and they are easy from which to fall out. The chair looks like SHIT but serves its purpose.

I spend approximately one hour with him during both OT and PT. He practiced throwing and catching a beach ball with Andrea. At first he was unable to coordinate his arms and hands to do so. I asked if I could help and she said, "Sure." Gregory was able to work through his inability with me and threw the ball with increased energy. I almost cried. He smiled. Then he proceed to throw and catch with Andrea.

Next with the help of four people (and me) he was able to stand up from the wheel chair and using parallel bars walk several feet. Everyone was excited for him and I could tell he was proud of himself.

Getting him to sit down was another story. Whether because of fear, or pain, or stubbornness he had a very hard time sitting down. All five of us were trying to direct him at the same time or in rapid fire. Andrea was the first to realize, "Hey guys. One at a time."

He was finally able to sit down while leaning his head on Andrea's shoulder, possibly for physical support but most likely for moral support and confidence!

Next Nick worked with Gregory to help manipulate his feet and arms, facilitating their movement with his own. After that Nick and I were able to get Gregory up a second time and he walked several steps. (Amazing for what one is grateful!)

Sitting down as very difficult again. To help him relax I began sining the "Soft Kitty" song made popular on the long running "Big Bang Theory" TV series. Sheldon's mother used to sing the song when he was ill and the "little boy" in him still needs to hear it when he is not feeling well.

Before I knew it, four other therapists joined in the singing, Gregory relaxed, and then was able to let us help him back into the chair. Hard holding back tears.

Soft kitty, warm kitty, little ball of fur.
Happy kitty, sleepy kitty, purr, purr, purr.



Comparison chart


Occupational Therapy

Physical Therapy

DefinitionOccupational therapy (also abbreviated as OT) is a holistic health care profession that aims to promote health by enabling individuals to perform meaningful and purposeful activities across the lifespan.A health care profession primarily concerned with the remediation (fixing) of impairments and disabilities and the promotion of mobility, functional ability, quality of life and movement potential
FocusHelping people live as independently as possible. Restoring function. E.g. brushing teeth, combing hair, going to the bathroom etcHelping people move better and get relief from pain. Restoring movement and mobility. E.g. stand up, walk, get in and out of bed etc
Who needs itPeople with mental and physical impairments, developmental disabilities, after sudden serious health conditions like a stroke, Chronic conditions, like arthritis, after a work-related injury.After injuries or long-term health problems like back pain, Osteoarthritis, spinal stenosis, Parkinson's disease, multiple sclerosis.

Change

It is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive

I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.

He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home

The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.

And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.

And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.

So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.

All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.


Causes

http://www.abraham-hicks.com/lawofattractionsource/index.php

I have often thought that the mean, angry, selfish, cheap, entitled people who were some of Gregory's architecture clients (some were wonderful) helped bring on his Alzheimer's.

I first noticed the changes at the point of his dealing with one of his most manipulative, mean clients. Gregory had been hiding the client's dissatisfaction and threats and when it came out and I questioned him, told me "I thought that if I did a really good job they would come around." 

Also during the last month before his psychotic episode, when he seemed to be reliving something in the past, he was talking about "those mean evil people" in very angry tones. 

Being such a loving, accepting, calm person he worked so hard to be good to and for his clients and many took advantage of that. Could this have been what "broke" him?

Monday, February 10, 2014

Brainstorms


Visitors

Mark and Colleen visited this weekend from Battle Creek Michigan. The visit was a difficult one because it was the first time Gregory's niece and nephew had witnessed him in his new, greatly deteriorated state. Also Gregory had been in the hospital for three days prior to their visit, was then transferred back to Lieberman on the day they visited, and he was weak and more than usually "out of it" after his Grand Mal Seizure and newly prescribed Dilantin.

Did he know them? I would say yes, he recognized them, was happy to see them, and interacted with them. (Minimally but that's an OK thing.) Could he explain who they are? Probably not but that doesn't really matter. Was there any in depth conversation or interaction? No, that doesn't happen anymore with anyone including yours truly. Did we have a good time? No, he was in bed and we sat there. So a good time - no, an important time - yes!

Visitors are important to Gregory if only because they are in the room and provide some distraction from his routine. It shows him people care and love him. He can pick up on their smiling face and loving hugs. He knows there is more to his world than just him and/or me.

So if you want to visit Gregory, that would be great! I accompany people on their first vist to provide an overview of The Lieberman Center, of what to expect from Gregory, of what to avoid conversationally while visiting, and what to do if physical support is needed. Then people are welcome to visit on their own. For future visits, I would like to know when people are planning on visiting just in case Gregory is not available, has other activities or volunteer visits, and so I can schedule my visit at another time to help make his day is fuller.


Fast Seizure Update

Just a fast update. Gregory is doing well and returned to Lieberman on Saturday after three days in the hospital. He ended up being in the hospital for the requisite 3 midnights of Medicare so he will be eligible for up to 100 days of skilled nursing care (read my not having to pay Lieberman) and occupational therapy and physical therapy as well. This should help him get back onto his feet more confidently. It is said that for every day in the hospital, three days are needed to regain your strength!

The care Gregory received at the hospital was stellar however an advocate is always needed, especially when the person cannot advocate for themselves. Turns out he hadn't pooped for two days so Alaksh and the nurse's aid sat him on the toilet and he was successful. Last thing one needs is to be constipated. The hospital was a little hesitant about G's being up in the bathroom but Alaksh convinced them. It isn't that Gregory couldn't walk or be on his feet. It is just that he is unsure on his feet and needs support. Also the verbal communication of expectations takes longer then most people are used to and sometimes doesn't work at all. This makes it look like Gregory cannot get up but also there are the times when Gregory just doesn't know how to "sit!"

Another thing that happened. Gregory's medical records are now on the hospital system's computers. For the most part that is good. But somehow it was assumed that an old, unused prescription for Xanex, an anti-panic medicine was to be administered three times a day. When I found that out I threw a hissy fit! First why? Second don't assume, ask me! Third his doctor has only known Gregory for the three weeks since he was admitted at Lieberman, I have known Gregory for 39 years!

When Gregory got back to Lieberman, the nurse called me early the next day to re-check his medications. I guess they do that every time a resident returns from a hospital visit. Good for them! They put him in a wheel chair to move him about but take him out and help him into a regular chair when they reach their destination. Good for them.

Today or tomorrow we will have another "Care Conference" to discuss Gregory's progress so far at Lieberman, especially with all the "interruptions."