A Christmas Gift

ADDENDUM:

Dr. Greenberg was able to celebrate Christmas surrounded by his students, Christmas Carols, and a letter from Santa. He passed away at 3pm today, December 26. He died peacefully in his apartment surrounded by his loved ones. One of his favorite quotes was: "The person who gives life to knowledge is not dead." 

• • •

Brook, the woman who was the Illinois Cremation Society Funeral Director for Gregory, sent me a last minute text wondering if I was free on Christmas Eve to deliver some cheer to a client of her friend who is a hospice worker.

She knew that I appeared as Santa periodically and the client who was dying had a request, even though he was Jewish, for Christmas caroling and a visit from Santa.

The client, Philip Greenberg, is a physics teacher who apparently has no family so his students are keeping vigil and helping him through his passage. A Jewish professor, requesting Christian carols, a visit from Santa, and being helped by his Muslim students.

Unfortunately I was not available to drive the two hours there and two hours back across Chicago to where Dr. Greenberg lives so I came up with this creative way of helping to fill his wishes. I wrote the following letter and Facebooked it to one of the students who in turn printed it out and read it to Philip

• • •

Dear Dr. Greenberg (or may Santa call an old friend Philip?)

I have been very busy as you must imagine getting ready for tonights delivery of presents to all the good little boys and girls around the world!

I have been checking my list and then checking it twice and your name pops up for all the wonderful time and energy you give your Physics students and others who love you so.

Unfortunately I checked the list a little too late this season so I have not been able to get you a gift but I wanted to send this note, and my photograph and to wish you a very Merry Christmas, a Happy Chanukah, and a Joyful Christukah and Hanukahmas!

Santa always appreciates it when his old friends still remember and believe in him!

Fondly,

Santa Claus

Gregory's Last Days

For about two or three weeks Gregory was sleeping more than usual. But sleeping is comfortable and OK. For a while now, we noticed that he would hold liquid in his mouth when taking a drink of water, juice, milk etc and Manny or I would have to stroke his under-chin or cheek and say, "Swallow, Swallow."

One of the final skills to go is the ability to swallow and that can cause un-chewed food and/or water to go down the wrong pipe and into the lungs, causing aspiration which can lead to Pneumonia. 

(Aspiration pneumonia is an inflammation of your lungs and bronchial tubes. It happens after you inhale foreign matter. It is also known as anaerobic pneumonia. This condition is caused by inhaling materials such as vomit, food, or liquid.) 

On Wednesday, September 30, Gregory had a haircut. He looked great. He was sleepy and only a little responsive. I spent a couple hours at his bedside chatting, singing, and touching. Manny was with him from 11:30 am until 6:00 pm.

On Thursday, October 1, Gregory had his routinely twice a week bed bath provided by Northwest Hospice CNAs. He slept through breakfast, all of the morning, and all of the rest of the day he was non-responsive but resting comfortably with the help of Hospice. 

Hospice informed me that Gregory most likely was developing pneumonia but that it could go either way. I had signed off on not giving Gregory antibiotics, feeling that if he survived it was because he was not ready to die and if he did not survive it was because he was ready to leave us.

We decided it was time to administer small doses of Morpheme which quelled all of his coughing and helped him breath easier. Oxygen to help with his breathing was put in place as well.

I spent 12:00 noon until 5:00 pm at his bedside, talking, singing, and giving him permission to leave us if he was ready. Manny was there 11:30 am until 6:00 pm.

I decided that Gregory did not need a vigil person with him as he was very comfortable and the Lieberman Nurses were doing a superb job making sure he stayed comfortable and not in any trouble. They would call me at home if there was any change.

On Friday, October 2, Gregory was still sleeping and non-responsive. Hospice informed me that in all probability he was preparing himself to die. He was unable to eat or drink for a second day because he was not awake enough to be able to do so. Often when a person has decided to leave this world, they stop eating and drinking anyway.

Nice that he had a fresh haircut and was clean with his bed bath. He looked very comfortable and was resting peacefully. Morpheme and Oxygen continued.

Many of our friends and family spent the day with Gregory, all of us in the room at the same time. We talked about what was going on, after asking permission and apologizing to Gregory for talking about him instead of to him. 

But we also talked with him, to  each other about all kinds of things. We joked and laughed and told stories. It was as if Gregory was in the room with us to be part of the "goings on."

I was with him from 12:00 noon until 5:00 pm. Manny was with him from 11:30 am until 6:00 pm. Again, Gregory got his privacy over night as he prepared to transition to whatever lie beyond this life.

On Saturday, October 3, Gregory's condition worsened but he continued resting comfortably. He was still non-responsive, on Morphene, on Oxygen, not eating or drinking. 

I again gave Gregory permission to leave when he was ready. Now the many visitors were talking to Gregory, not each other, holdings his hand, massaging his arms and legs. Mostly quiet prevailed. People started spending alone time in the room with Gregory, with the door closed, saying their goodbyes. 

I was with Gregory from 12:00 noon until 5:00 pm and said goodbye by crawling into bed with him, telling him what I needed to say, gave him permission again to leave when he was ready. I crawled out of bed, kissed him all over his face many times.

We had what we called "Ceremony of the Seven Kisses with the only rule being that after announcing out loud, in a sing songy way, Ceremony of the Seven Kisses, there could be fewer than seven or more than seven but never seven. Fun being silly.) Finally I kissed him on his open mouth three times. 

On the third kiss, Gregory mustered his energy from somewhere deep inside and kissed me back. No words. Just a beautiful last kiss. A final Magical Momentary Monumental Experience.

Manny was with him from 11:30 am until 6:00 pm. Again, Gregory got his privacy over night as he prepared to transition to whatever lie beyond this life.

On Sunday, October 4, God-Son Isaac and I lit a candle to help guide Gregory as he continued preparing to die, as we were leaving the condo headed to Lieberman. The candle, placed on the stove, allowed us to notice it was 12:04 noon. The phone rang at 12:07 noon. It was Manny who informed me that Gregory just took his last breath.

I was glad that Manny was with him but also felt that I had made the right decision not to be there when Gregory passed because our great love for each other would only complicate and might cause Gregory to want to hold on longer. "They" say that often people wait until they are alone to die for this reason. But I was glad that Manny was there.

Jan, Jake, Isaac, and many Lieberman staff came through to sit with Gregory to wish him safe travels. I sat with him and talked to him and cried for a while. I held his still warm hand and kissed his cooling forehead and lips. I had wondered if I could get through this part of Gregory's leaving us and it turned out to be fairly easy. It was still my Greggie lying there his bed but it was obvious that his essence, his spirt was no longer living there.

The Hospice Nurse arrived to complete the Death Certificate details. We all left and the Nurse supervised the removal of his remains when the Cremation Society of Illinois people arrived.

What Really Matters at the End of Life

My friend Carol, who has family at Lieberman and who shares the Secretary position to my Vice President position on the Lieberman Family Council, shared this with me. It is very timely and carries a profound message about life and death.

Massage Nirvana

Today was Gregory's first meeting with the hospice massage therapist. Ernie Love, perfect name for how good he was, taught for 30 years then went into massage therapy. He volunteers his time with Midwest Palliative Care and Hospice.

I filled Ernie in a little about Gregory: past and present. He was very gentle with Gregory and most of his body work (done on Gregory in his wheel chair) was informed not only by experience but also by intuition and his ability to read Gregory's reaction and involvement in the massage process.

While working with Gregory, Ernie would talk about what he was doing, what he was experiencing, and what feedback he was feeling from Gregory. Then he would come over to me and demonstrate on my neck, my back, my head: what he was doing with Gregory and why.

Gregory trusted him from the beginning and disappeared (in a good way) into the process including working with Ernie during various moves. You could see Gregory concentrating, pushing back, rocking into Ernie's motions. Gregory would grimace but less due to being in pain and more to the good pain of having your muscles, tissue, joints, etc moved, flexed, stretched.

Periodically I would ask Gregory if he was OK and he would reply "OK." I would ask, "Is it good?" and he would reply "Good." The amazing response came after approximately an hour of work. Ernie sensed that Gregory had had enough of a workout and told Gregory he was finished with the massage. Gregory gave a big sigh and without prompting said, "Wonderful."

Both Manny and I watched and listened and agreed that we learned a lot from Ernie. His philosophy was to help Gregory, especially since he is always in his wheelchair, get in touch again with his body and to be aware of the movements, pressure points, releases. Ernie referred to Gregory's body being able to get in touch with his "new normal."

Manny, Halina, and I will continue to give Gregory massage work and Ernie will be back again on Monday. Being a volunteer we are not sure how often he will be able to visit but we are grateful to him and to Midwest Hospice for the experience today.

Needs

12:00. In bed. White noise on. Cats settled in. Drifting off to sleep.

I engage my angels, spirit guides, ancestors, heavenly teachers, animal spirit guides, celestial masters, "Keep an eye on Gregory. Keep an eye on me so I can be there for him and help meet his needs."

Then an awareness. This is what I try so hard to do. Since Gregory can no longer express let alone meet his own needs, it is my responsibility through my love for him, to make as sure as I can that his needs are met and that he has no reason to need.

When all your needs are met, you can be at peace, not having to worry about them, or formulate what they are, or figure out what they might be, or seek to meet them. After living with and loving this man for over forty years, I am usually on target when thinking about what his needs are or might be. 

The nursing staff and CNAs at Lieberman are usually on top of the game of meeting Gregory's health needs. Often I will go to the nurse with a question and she will already have been on it. They are quick to run tests to rule out things like infection, out of balance dilantin, etc and quickly get the results and report back to me. When I inquire about something I think needs attention, they are always on the ready to support me in helping to make sure Gregory's needs are met.

The people with his hospice, Northwest, are so present to help, identify, inquire, inform, and help instigate necessary change. Keeping Gregory healthy is so important, especially because often the only way to tell that Gregory's health is out of balance is by our observations. Then the treasure hunt begins but so far the hunt is always easily won and Gregory feels better.

Manny, Gregory's private care helper (to whom I attribute "Sainthood" or "Hightly Placed Angelhood") is also always attentive to making sure Gregory is comfortable, content, not hungry, well hydrated, happy, and most of all safe!

Of course it seems like many of Gregory's needs are no longer important to him like going to work every morning, reading the newspaper, taking care of anyone other than himself, planning his day, making decisions, worrying about the future.

He doesn't have to worry about earning a living, cooking a meal, taking a bath, getting himself dressed, shaving, or doing the laundry. He doesn't have to make his bed, clean his room, dust, grocery shop, or take out the garbage. He doesn't have to remember important dates or be anywhere on a certain day, on time.

So we make sure he is not hungry, is comfortable in his wheel chair, is clean and dry. We make sure his skin is soft, that he does not itch, that he is not in pain, that he is not uncomfortable. We make sure his is cleanly shaved, nicely dressed, and feeling fresh. We make sure he is not too cold or too warm but rather, as Goldilocks, "Just right!" We keep his room orderly, with familiar objects, with fresh flowers, and scented with lavender. 

Throughout the day we offer treats of chocolate, pretzels, bread sticks, rice pudding, cold juice, milk, apple sauce, etc. Now and then we bring in food that the facility does not offer like fresh cherries (pitted of course,) an home made peach pie, fresh figs, a chocolate bundt cake from the bakery. I plan to but have yet, "ordered out" so he can have some of his old favorites like Pizza, Chinese, Greek, etc. I did bring in Sushi the other day and he seemed in heaven!

I think that between Lieberman, Midwest Hospice, Manny, and myself; we keep Gregory's needs met and I think that he would agree if he could!

Update

Gregory is doing well. The aspiration in his lungs has disappeared and while he is still coughing, it is getting less and less. No fever. Good appetite. Alert. Aware. Engaged. In his own inimitable style:-)

Hospice will continue to support us at Lieberman and that means extra nurse attention, social worker attention, music therapist, etc, etc. Eligibility is reevaluated every three months and he might be kept on due to his "End Stage Alzheimer's" diagnosis (sounds worse than it is and could go on for years!)

Meanwhile we continue "The Battle of the Chairs." I think we have had ten or eleven Broda chairs in the last three months. So many variables that need to get communicated and for some reason or other do not get "sent" or "received" or "understood" or "followed through." No one at fault, not placing blame, it has just turned into a "Comedy of Errors."

Sometimes the chair seat is too wide, or too narrow, or  too short (never too long,) or it doesn't tilt back easily, or it tilts back but doesn't stay back, same for foot-rest from dysfunctional to downright broken, sometimes it is easy to push the chair other times you bounce off the walls trying to control it down the hall.

I will say that the chair provides perfect posture for Gregory's back and provides stability. I will say that it has not yet accommodated his long legs. We are getting close to a solution. You'll be the first to know (no - Gregory will be the first ;-)

The Broda in upright position with removable tray.

The Broda tilted for comfort. Showing side arm removed.

Totally tilted so person can change posture, take a nap,

or with side arm removed as shown above be changed and

cleaned up without having to be moved into bed.

Wish us well in our quest for a chair that meets all variables!

Letting go

Thanks Daily OM, you did it again. As I have been dealing with Gregory's illness and getting Hospice in place my horoscope shows up to reinforce (in my eyes) my decision and to calm my emotions. While letting go of Gregory is emotionally painful, I know that intellectually it is the right decision and that wanting him to be with me, at any cost, is only being selfish. When you love, you know you need to let go. I hope that Gregory is able to stay with me a while longer and know that it will be his decision when to leave, but I do not want him to suffer or disappear into a state of nonexistence without death if possible. Time will tell.

April 26, 2015 Ease of Letting Go Aries Daily HoroscopeYou could take things much more easily today, which may be because you feel like going with the flow. It might be that you are able to accept things in life as they are – perhaps because you know that the universe is taking care of you. Expressing your appreciation to the universe for everything that you have could make you feel an even greater sense of ease today. As you look around your life, you may want to assess what it is that you have. If you can think not only in material terms, but also in terms of the other gifts you have been given – family, friends, talents, dreams – you may see that there is nothing you really lack in your life. Understanding that you have everything and that the universe will always take care of you may help you to see that being grateful is a powerful way to let go of your struggles and simply reside in the abundance that defines your life. When we learn to let go of our effort to have everything in our lives, we will realize that we already possess all that we need. Being able to release these desires lets us go along with the things that happen in our lives; instead of feeling that we need to hold on to a specific plan or thing, we allow ourselves to exist freely and unencumbered. By appreciating the bounty you have today, your life will be effortless and harmonious.

Clearer by Day

Last night after the call from Gregory's private nurse about his continued coughing and possible aspiration, I reaffirmed my decision of "No Heroics," if he is dying just hold his hand. Both Gregory and I had talked about this previously and often.

But afterwards I was left alone in the condo with my sorrow, my fears, my wondering what the future would bring. Usually I am able to keep those emotions under control and allow them to surface for brief periods of time. But last night I lost sleep and until the light of day shed a new look at life, I slept little.

Visiting Gregory today was up-lifting. He was still coughing and sounded sinusy but he was in a good mood, was not uncomfortable, laughed a lot, and sang along with me to "When You're Smiling."

When the Hospice nurse came in I introduced her to Gregory as a special nurse to make sure he stayed healthy. He was so communicative and correctly answered "Yes" to all the questions I posed to him like, "Are you feeling OK?" "Are you happy." "Is your chest feeling better?" Then I switched, not knowing where we would go, and said, "Are you feeling terrible?" And after four or five "Yeses" he correctly answered, "No." Both the nurse and I were pleased and amazed!

The Hospice nurse was wonderful, examined Gregory, and finished up the paperwork. She believes, for what it is worth, that Gregory does not have Alzheimer's but rather the form of dementia called Fontal Lobal Dementia. It presents itself differently than Alzheimer's and while in some ways it is all the same in the long run, I had myself often though the same. It felt good to be validated in my thinking.

So I feel empowered knowing that for now Hospice is in place in case Gregory's aspiration turns to Pneumonia, that they will be ready to help keep him comfortable whether he decides to stay with us or to leave us behind, that minimally he will have an additional nurse to look after him, and by the "Light of Day," I am feeling relieved and better.

Hospice Care

Gregory has a bad cough and cold again. It is the third in less than three months. His special care nurse called yesterday to let me know that she thought it was moving towards Pneumonia in his right lung.

This is often common in people with advanced dementia because they begin to forget how to swallow strongly at meal time and can aspirate (accidentally drawing material from the stomach or throat into the lungs) which can lead to Pneumonia. 

I will be meeting with the Hospice nurse at 4:00 this afternoon to activate Hospice Care for him. It is a pre-emptive move to make sure he will be comfortable should his illness get worse.

Hospice Care is not a death sentence and does not mean that the person will die soon, just that there is the possibility of needing specialized, more intense nursing care in case the illness does move towards death.

You have heard me talk about not wanting to inadvertently prolong Gregory's life, we both had talked about this when he was still able to do so, and therefore I have decided not to have his doctor administer antibiotics.

In the case of Pneumonia, this could lead to death. So my stand is that Gregory will decide (be able to get over) this latest round of illness by himself (as we keep him comfortable) or he will decide to (euphemistically) "go home."

Of course I will miss him and our daily, although narrow visits. I will be devastated by his death. But my decisions are made with love and only with Gregory's well being in mind and as I said we both agreed on these actions previously, not only for him but also if the decisions were being made for me about my health.

Of course I can intellectually discuss these issues here but with an emotionally heavy, sad heart. I'll keep you up to date as I know more.

Flu Season II

An update. Gregory's fever finally broke this morning (without a trip to ER, thank you.) He is feeling much better as you will see in Manny's comments at the end of this post.

Meanwhile I had a talk with Lieberman's Fifth Floor head nurse director about Hospice. We had talked previously and she suggested that it is never too soon to get Hospice set up as there are many side benefits, some of which I will share at a later date.

Gregory and I have long been familiar with Hospice ever since he took training some 30 years ago and actually helped care for two people before he found a full time job and did not have time to volunteer.

He would help the caregiver(s) clean the house, go grocery shopping, help with cooking, or just sit will the ill family member so the caregiver could run errands, get away, or hide out and nap in the other bedroom.

Midwest Hospice has as it's mission: We support he whole person - body, mind, and spirit, with truly innovative world-class palliative care, hospice, and grief support. Giving you your best day, today! Imagine care differently!

In the past, Hospice was involved during the last week or month of a person's life to help them die comfortably and gracefully and to support the family as well. Now the services and time provided by Hospice has broadened.

After facing my decision to NOT send Gregory to the ER, as a staff doctor had recommended, I decided that this was a head's up to get Hospice going for Gregory. It is a difficult decision if only because it admits and accepts that he will die sooner rather than later.

Intellectually I accept this easily and will be able to make appropriate decisions as I am needed to. Emotionally is another story but I do not have to deal with that now as G is still fairly healthy and who knows when death will announce itself. No use in worrying about that which one cannot control.

Actually I feel a level of power and control over my life, Gregory's life, and over the situation having been able to make this decision. Hospice will provide needed services now and will be there when I need them the most at a later date. By then they will know me and know Gregory and will be part of our "family."

Meanwhile on a lighter note, here is verbatim, Manny's report on how Gregory is doing today as taken from his texts to me. Manny has a wicked sense of humor as demonstrated below.

Manny:

Greg ate full lunch n took  liquids normal amount ... awake all the time and serenely talking ... had a big fecal explosion at 2:45pm eroding all demonic plaques in his stommigo. 

Michael:

Your comments made me laugh out loud LOL. Thanks for the update.

Manny:

I mean it ... lol ... Ur welcome ... Y pleasure

Michael:

I can imagine that you do mean it! Just glad I wasn’t on the receiving end. And stinko! Did Gregory get the giggles?

Manny:

Smelled fantastic ... my spirit voluntarily transported to other realm

Michael:

Your spirit had no where else to go ...

Manny:

What do you expect with the lava n boulders ... browned by demonic possessions. I sprayed lavender room deodorant ... opened the window a short time ... didn't help!

Michael:

K and TKS

Manny:

K