Perspective Changes

Interesting how one's perceptions of life change when an important person in one's life dies.

When my mom and dad died, I wrestled with how someone could be here today and gone tomorrow. Wondered where that energy went. Wonder where our time together went from my being a child, to a teenager, to a young adult, to a full grown adult (if one ever becomes full grown.)

I missed them. I grieved not only their death but what I considered the missed opportunities for parent/son relationships and how different it could have been if they were different, if I was different. 

Acknowledged that I was grateful for many opportunities they did provide and for the love that existed. Acknowledged that they did the best job of parenting that they could and that I did the best job of "offspringing" that I could.

Now, with Gregory's passing, my perceptions of time have been shifting and the shift has caused me to do some deeper thinking.

Gregory and I lived, and we worked at living well for twelve years, with his diagnosis of Dementia/Alzheimer's. At times our life felt normal and at times we also felt like we were living on a roller coaster as his needs confounded, our interactions became surreal, his abilities failed and resurfaced only to finally fail again.

Now when I think about those twelve years, it feels like minutes. At the time it felt like forever, but now that the confusion, frustration, anger, sorrow, fear, etc no longer exists, it feels like moments.

Gregory spent the last 18 months of his life at the Lieberman Center for Health and Rehabilitation on the Alzheimer's Special Care Unit. At the time it was a day in and day out activity. Grateful to Manny for providing not only care and safety for Gregory but also for the love, socialization, and life enrichment he provided on a day to day basis.

When Gregory's health needed extra attention or his medications needed rebalancing or when his difficult behaviors needed a look see; my life would feel topsy turvy. But once the Lieberman nurses, doctors, hospice care, and I did our problem solving; things settled down for both Gregory and me.

Now, with Gregory on his next adventure, without my daily visits, and the Care Conferences, and the monitoring of his daily needs and treatment;  it feels like Lieberman was but a breath.

During the three days it took Gregory to die, I saved many vivid, sometimes difficult and sometimes joyful, memories of the process. None-the-less it feels like those three days were shrouded by a certain numbness. 

The planning of two tributes for Gregory was easy. Gregory's Memorial at the condo (attended by over 100 family and friends) was gratifying and consoling as was the Lieberman Memorial to thank them for their care and support (attended by over 150 staff, residents, and families at Lieberman the following week.)

Now, when I think of Gregory, it feels like his dying was but an instant and at the same time that he has always been dead, when if fact it is just over two months since he died. Strange feeling - ALWAYS been dead.

The thoughts which next occupy my mind then ... based on Gregory and my twelve years seeming like a moment, and his Lieberman stay feeling like a breath, and his death feeling like not only an instant but also forever ... are that my life, now, will last just a few moments longer with the lesson being that I must live each day to its fullest doing things that matter to me, spreading joy and love whenever I can, and doing the best I can without being too unforgiving of myself and my weaknesses and being forgiving of others. 

• • •

In this thinking and these awarenesses, I focus on the buddhist teachings which explain that our suffering is based on permanent attachment to things which are ever changing. Nothing is permanent. 

Thus early Buddhism declares that in this world there is nothing that is fixed and permanent. Every thing is subject to change and alteration. "Decay is inherent in all component things," declared the Buddha and his followers accepted that existence was a flux, and a continuous becoming.

According to the teachings of the Buddha, life is comparable to a river. It is a progressive moment, a successive series of different moments, joining  together to give the impression of one continuous flow. It moves from cause to cause, effect to effect, one point to another, one state of existence to another, giving an outward impression that it is one continuous and unified movement, where as in reality it is not. The river of yesterday is not the same as the river of today. The river of this moment is not going to be the same as the river of the next moment. So does life. It changes continuously, becomes something or the other from moment to moment.

Take for example the life of an individual. It is a fallacy to believe that a person would remain the same person during his entire life time. He changes every moment. He actually lives and dies but for a moment, or lives and dies moment by moment, as each moment leads to the next. A person is what he is in the context of the time in which he exists. It is an illusion to believe that the person you have seen just now is the same as the person you are just now seeing or the person whom you are seeing now will be the same as the person you will see after a few moments. 

Even from a scientific point of view this is true. We know cell divisions take place in each living being continuously. Old cells in our bodies die and yield place continuously to the new ones that are forming. Like the waves in a sea, every moment, many thoughts arise and die in each individual . Psychologically and physically he is never the same all the time. Technically speaking, no individual is ever composed of the same amount of energy. Mental stuff and cellular material all the time. He is subject to change and the change is a continuous movement.

Impermanence and change are thus the undeniable truths of our existence. What is real is the existing moment, the present that is a product of the past, or a result of the previous causes and actions. Because of ignorance, an ordinary mind conceives them all to be part of one continuous reality. But in truth they are not.

The various stages in the life of a man, the childhood, the adulthood, the old age are not the same at any given time. The child is not the same when he grows up and becomes a young man, nor when the latter turns into an old man. The seed is not the tree, though it produces the tree, and the fruit is also not the tree, though it is produced by the tree.

Taken from: 

http://www.urbandharma.org/udharma8/imperm.htmlhttp://www.urbandharma.org/udharma8/imperm.html

Appendectomy With An Awareness

This took place last Tuesday, September 8.

The severe pain started at 10:00 Tuesday night. I took myself to ER at 3:00 Wednesday morning. Had surgery by 9:00.

God Son Isaac sat with me during recovery. Jan, his mom/my friend, dropped by to spell him. Slept fairly well. Came home Thursday by 10:00 driven home by Manny. 

Doing fairly well and taking it easy at home. Amazing what they can do now-a-days. EVERY doctor, nurse, aide, staff member at Evanston Hospital was cheery, friendly, helpful, caring.

The food was horrible: sewer water chicken soup, oily red jello, bitter tasteless coffee. 

The great timing of all this is that I was due to fly to Portland to visit friend Pat on Wednesday. Can you imagine how this would have come down if I was on the airplane or even in a new city without my own home for comfort? I am grateful to the Universe. 

Given the situation, and my staying low key, I haven't visited with Gregory since last Tuesday, some 5 days ago. In debating whether or not to visit today (still feeling a little stomachy and nauseous) I realized that I constantly think about him non-stop. Even thought we are not living together, his presence is with me emotionally, physically, and intellectually.

I know that he is in good hands with Lieberman and Manny and Halina. The reality is that after five days he may not remember me or think about me as I do him. I'm not saying that he does't know who I am anymore, but without the trigger of seeing me, I am probably not part of his awareness. 

This led me to the realization that I NEED him MORE than he NEEDS me! Interesting. As long as he is happy, content, safe, well fed, kept clean, and somewhat entertained ... his life is full and he is OK. 

I am the one who suffers when we do not see each other. Not really sure what all this means so will have to think more about it. But an interesting awareness don't you agree?

"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!

The following is an e-mail to Gregory's new companion. We are excited about his joining us and are hopeful that it will work well. In the beginning, the key to success is lots of communication between me (the employer) and the companion about what to expect as well as how things go when with Gregory (the client.)

A

Enjoyed dinner with you last night. 

In the beginning you and I will be communicating a lot about how to work with Gregory. As I mentioned it is important not to talk or whisper behind his back. I mentioned that in the beginning after each time you are with Gregory, I'll walk you to the elevator "to get the mail" and we can check in about how the day went. You should feel free to ask questions and I will fee free to inform and comment. Also feel free to e-mail me afterwards. 

You can text me when with Gregory and if I do not respond within a reasonable amount of time please follow up with a call. Sometimes I do not hear the text "ding." 

Not knowing how to handle a situation isn't as important as discussing how it might have gone. 

Primary is Gregory's safety followed closely at hand by his happiness/contentedness and all done with respect. I know you understand that but want to mention it again.

Things you can do include:

going for a walk in the neighborhood, on campus, to the lake. You need to keep an eye on how he is holding up, especially in hot weather, as he is not able to monitor that for himself. There are small metal water containers in the refrigeragtor with a belt hook. Please make sure he takes one when you go for a walk (and also that he doesn't put it down accidentally on a bench and leave it behind. Those buggers are expensive.

browsing Barnes and Nobel.

5:00 coffee and cookies are a must. (I'll show you how to use the coffee machine.)

going to Starbucks for his 5:00 coffee.

swimming downstair as LA fitness. (I'll walk you through this.)

working together on a LEGO building or on a jig saw puzzle.

looking through books/magazines (by himself or sharing them with you.)

listening to music. (I'll teach you i-tunes)

sitting on the balcony or going down to the roof top garden.

whatever he wants to do by himself. 

take a nap (you can also!)

watch TV or a DVD

any other ideas you may have (be spontaneous or check with me.)

NOT OUT OF THE NEIGHBORHOOD

You do not have to occupy his every moment and should feel free to work on your own stuff now and then. I'll give you the wifi password so you can get online. Just quiet time together can be wonderful.

Ask now and then "Do you have to use the bathroom?" especially when you are about to go out for a walk.

When you look through books or discuss buildings you probably know by now that he is not too good with language. The ideas and knowledge are all there in his head but he cannot get the words and/or associations out for proper communication. 

One idea is that you can comment on what you see and he can confirm. Be careful asking too many questions because he cannot process or communicate and that may lead to frustration. I find that our best days are ones that are somewhat zen, just being one with our environment and place. I'll comment and tell my stories AS WELL AS his.

I'll let you know when we are ready for a cooking adventure with you and G shopping and preparing dinner. First I'll "walk you around" the kitchen and show you where things are.

Not sure if you'll encounter this but if he becomes concerned about something you might say something like, "We'll talk to Michael about this later." or "I'll check with Michael." or "I am sure it will all work out." I have found that white lies, distraction, and redirection also help.

I am sure there will be more later 😄

m

Meditation

Session five.

Spent more time today on emotions, session intention, and heartfelt life desires. I won't be able to be too articulate about this session because I WAS GONE. For the full 40 or so minutes. I was able to reach a deeply meditative state away from day to day activities which often are hassles especially at this holiday season. Was able to get away from Gregory as a main focus and spend some quality time with myself. All kinds of little awarenesses came and went but none dominated or distracted my relaxed meditative state. It felt good.

My intention was to be better able to take care of myself in whatever ways are necessary. "I take care of myself."

My heartfelt desire was HAPPINESS. "I am happy."

Interestingly enough I did spend a little time thinking about those activities which I would usually attribute to my responsibilities and immense love for Gregory. I realized that those very "requests," summarized by the term HAPPINESS, all had to do with me! For example being supportive of Gregory in a loving, even, patient way provide me with peace of mind and therefore happiness. So Gregory definitely benefits, but those actions add to my feeling of happiness.

I visited my "internal resource," which I have mentioned previously. It is deep in a mature forest, with a clearing with dappled sunlight and flowers, and just across a path my tiny house just big enough for one. Today I added a rustic bench to the garden. About a block away at the edge of the forest is the ocean with the waves that can be heard through the house's windows or while sitting in the garden. Corinne suggested we give our "internal resource" a name so we can use it as a trigger to the inner peace and safety one feels there. I called it, "Peace."

We revisited the ability to "Welcome" emotions, to recognize "Emotional Fusing" and to be able to de-fuse. Welcoming means that as human beings we WILL experience emotions, some good some disturbing. By recognizing that fluxuation of the emotions one can invite the disturbing ones in, wonder about them, deal with them, "ask them" that they are seeking from you, and finally ask them out.

Fusing deals with the occasions in which the emotions totally take you over, like being so angry you "see red" or you "rage" or can't stop crying. By realizing that you are fused with the difficult emotion, you can accept it but then begin to release and back away and defuse from it. We all get "fused" periodically, but better to be aware of the "fusion" than to be lost or trapped in it without awareness.

I Love My mouse

This is the third of three postings about the recent possibility of using a skin cancer drug to help reverse Alzheimer's.

I have nick named Gregory (if only in my mind,) MOUSE.

On one hand it reminds me of the adorable, yet complex character in the "Tales of the City" by Amistad Maupin.

It also is a quick way to keep awareness of what it must be like to experience what Gregory is going through based on the above study's mouse's inability to do something as innate, and simple as building a nest.

Mouse. My little mouse.

For more than three decades, Armistead Maupin’s Tales of the Cityhas blazed its own trail through popular culture—from a groundbreaking newspaper serial to a classic novel, to a television event that entranced millions around the world. The first of six novels about the denizens of the mythic apartment house at 28 Barbary Lane, Tales is both a sparkling comedy of manners and an indelible portrait of an era that changed forever the way we live.

Iron Lady Continued

Chatted with G after dinner about "The Iron Lady" but not really sure he realized until I mentioned it that Margaret Thatcher has Alzheimer's Disease. The movie, however, really affected him. (I think the movie and Ms. Streep did a really good job of portraying what it is like to live with the BIG A.)

In the past (B.A. = Before Alzheimer's) when he got really involved in a "heavy" movie he would be distracted and "lost in it" for a while after (hours at least.) This time his distraction via Alzheimer's showed up during dinner when he didn't know how to cut the peach in his peaches and cottage cheese, started to pull it apart with his fingers, so I cut up his food for him. He was quite confused between his knife and spoon, when he did figure out that the knife was to spread jam on his English muffin he did not really understand the principal of how a knife carries the jam and spreads it.

After his muffin was gone, he loaded up his knife with more jam, "Where am I supposed to put this?" he asked. "Back in the jar," I replied, "you have no more muffin to put it on."

He was aware of how confused he was and (in his few-ly worded way) recognized "How I am after a movie."