Manny

This man, if not a Saint then a highly placed angel, made Gregory's 20 months at The Lieberman Center pretty exceptional. The loving care Manny gave and the bond he and Gregory developed was a thing of beauty. Manny gave Gregory comfort, nourishment, music, fresh air and sunshine, chocolates, DVD movies, stories read aloud, exercise, camaraderie, touch, love, and more. In turn Gregory gave Manny cooperation in his tasks, smiles, growls, funny faces, tears, peaceful looks, songs, meaningful babble, unspoken love and adoration, and more. I will be forever grateful to you Manny Kagatan!

Fashion Show: Dress to Impress

At Lieberman today a "Fashion Show: Dress to Impress" took place in the community room. Approximately two dozen residents, both men and women, dressed themselves up beautifully in anticipation of walking the red carpet runway. Staff were also decked out in their finest evening wear and high heels. Some fifty other residents became the appreciative audience.

Below are photos of Gregory all dressed up. Manny got him dressed up in a pair of kaki's, with real shoes, and a soft black polo top. I dropped a tear or two because it has been a long time since I have seen Gregory dressed like the "olden days" as compared to his usual sweat pants and long sleeved T.

Manny is always so loving and caring and went to a lot of trouble to have Gregory shining for his runway debut including buying him the new black shirt. I added the handmade rainbow silk scarf which was a gift from Susan Tillett and the top hat which was purchased from the Lyric Opera of Chicago "Garage Sale" last year.

It was decided that Gregory looked like something out of "Willy Wonka and The Chocolate Factory," "Dr. Seuss," or "Alice in Wonderland's Mad-hatter Tea Party!"

This and That and The Other

I was sitting with Gregory today having brought a bag of chocolate covered mini-donuts as a gift. He ate two of them in bites that I offered. Then he leaned forward and pointed to what I thought was the glass of water on the dresser. "This," he said insistently, "This."

Surprised I said, "Do you want some water?"

He replied, "Yes." So in my amazement I helped him to take a few drinks.

"Do you want more?" I asked.

"No," he calmly said.

Now did I read into the conversation or was he communicating? I know what I would like to think. What do you think?

• • •

Next chapter in the Broda wheelchair fiasco. As you may have read in past posts, Gregory has had over one dozen chairs and maybe one or two of them worked "well enough." Sometimes when it stopped working, Advocare, the chair rental company,  would replace the old chair with one that was worse. How do you figure that?

Lieberman pays for the chair rental as part of the monthly fees. Medicare and/or Medicaid do not pay for chair rental. Go figure. M&M would pay for a custom chair if made for Gregory but not a Broda custom chair. Go figure.

Broda is a really good chair for Gregory, when it works, as he basically lives in the chair. It supports his back and by the nature of its construction has helped his skin from breaking down. Also it can be tilted into a comfortable angle for resting and even further when he wants to take a nap.

So I talked with Broda and got a lot of information about how the whole thing of chair rental works and was given the name of the VP of Advocare who provides the rental chairs to Lieberman. 

Today I called Advocare, under the guise of wanting to find out more information and talked with the VP, dropping the name of the VP of Broda who gave me her name and phone number.

I told her my dilemma and how this has gone on since Gregory started at LIeberman some 18 months ago. I also supportively told her about what seemed like quality control issues and dropped the hint that many family members and RCAs have complained that the chairs just do not work well.

I understand that Advocare has a fleet of chairs that are reconditioned and reissued as residents change. Maybe they are having quality care issues or maybe the reuse life of the chairs is past.

Either way, the VP of Advocare assured me that Gregory would get a perfectly working chair today (which arrived a few hour later as I was leaving) and that they were going to send out a crew to check all of the chairs at Lieberman!

I didn't want to get into trouble by inadvertently overstepping my boundaries, so I let the Nurse Director (who usually orders new chairs) know what happened, and the Assistant Head Nurse for the Building (who previously got involved with the possibility of a custom chair,) and the Director of Facilities.

I explained what had taken place "just because I had inquired about Medicare and wanted to understand how the wheel chair situation worked and that I was thinking of just buying one of the $3,500 chairs brand new for Gregory.

The Director of Facilities laughed when I lovingly told her I was letting her know about what happened because she is in charge of everything that goes on in the building. She replied, "No you are in charge!" I laughed. She continued, "You get things done, and I like that!"

• • •

Sometimes when you are trying to take off a dirty or put on a clean undershirt and/or top shirt; Gregory is resistive. I helped Manny with the task today and it was difficult.

I asked Manny if when he is helping Gregory with his exercises, does Gregory resist, I was just curious if it was because of the changing or that Gregory's arms were somehow in pain? Manny replied that the resistance is usually because of the ordeal of being changed but that usually Gregory is pretty cooperative. 

He added that when they are exercising, "if Gregory resists or 'goes into himself,' I stop what I am doing and let it rest. I go back last when Gregory is present and try again."

How intelligent, aware, caring, and loving is that of Manny? Our Saint Manny or at least a Very Highly Placed Angel. (P.S. Hi Manny! He keeps up with my "ravings" by reading this blog:-)

My Chance to Be a Partial Full Time Caregiver Again

Manny had been out with a bad cold since Sunday which means that I have been covering lunch and dinner for Gregory. I arrive at Lieberman by 11:00 and leave by 6:00 or 7:00.

The time I spend with him is not strenuous but it is exhausting. I cannot imagine the energy and stamina that the RCAs (Resident Care Associate) have to care for their ten charges while I only have one.

But exhaustion aside, I have enjoyed my extended stays with Gregory. Besides helping him with his meals, I have brushed his teeth, given him shaves, combed his hair, massaged his back, watered his plants, refilled his refrigerator, and reorganized some of his dresser drawers, told him multiple times "I love you," fed him cookies and pretzel rods, helped him with copious glasses of water, watched his South Pacific DVD and several cooking shows (he loves both of these the most,) and more.

At his level of ability, at his level of functioning, at his level of intellect ... I love him and enjoy being with him.

Sunday at Lieberman, a Piano Recital of 20 young pianists

Gregory was moved by several of the young performers

I added some new flowers to the top shelf of Gregory's window sill. Do you think I over did it? The plants on the bottom shelf have been there for several months.

All new green plants on the self next to a picture of Julia Child. Every now and then Gregory catches sight of the picture and gets joyful. I then retell the story of how she and he lived in the same neighborhood in Boston and shopped at the same butcher shop. When they were both at the shop they would exchange nicities, weather talk, and discuss the various cuts of beef and what they were going to do with them. She listened to his menus as closely as he listened to hers!

Petrie Dish Part II

Manny, Gregory's day care aide, was ill Monday through Wednesday. He is rarely off from work so I can imagine that he must have been feeling really poorly. I covered lunch and dinner on the first day, did lunch and asked Isaac to cover dinner on the second day, and then I got sick on the third day.

101.7 fever. Nauseous. Runs. Slept all day.

Susan, dear old neighborhood neighbor and friend covered lunch and Pat, dear new friend and Gregory aficionado covered dinner. Susan's comment was, "I just love when he reaches out and holds my hand." Pat's comment was, "I have not made such a mess since the boys were in high chairs. Too much round food!

I share this with you for several reasons. First I am grateful to my family of friends for their being available to support Gregory when I am not able to.

Also, for those of you who are caring for a loved one, do not be afraid or embarrassed to ask family and friends for help. You will find that if they can spare the time, do not have to work at that time, or do not have previous unchangeable plans; they will be at you side to support you and your loved one!

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

Flu Season

Even though Gregory had his flu shot, and me mine, we are both under the weather.

Mine started on Christmas Day.

Not sure when G's started.

Mine: fever 101+, cough, congestion, sinus burning, short breath, bloated, minor ache, chest pain, sleeping, dizzy.

Gregory's: according to head floor nurse, fever and chills. He will stay in bed all day today and have meals in room.

I have stayed in bed and not visited Lieberman since the day after Christmas.

Floor nurse informed me of Gregory's condition, that the doctor would visit again today, that on assisted living floors 6 and 7 they have begun quarantineing, and that everyone on 5 has received the Tamiflu Medicine. 

I have a call into my doctor and have Isaac around to help if needed.

I asked Manny to come in earlier and stay later during Gregory's illness.

The difference is that I can communicate my aches and pains and needs while Gregory cannot. I wonder if the flu is worse when you can gripe about it or when you don't know the difference, just that you don't feel right?

I am happy that Manny can spend more time with him.

The Last of Fall

These photos were taken during the last days of Fall at Anixter Park behind and attached to The Lieberman Center. How happy we all look.

Impermanence

Things are changing again. For the last week or two I have been weighing in on the heavier side of sad when compared to joy.

When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.

You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.

When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.

Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.

When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.

When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.

While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.

Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.

In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.

It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.

When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.

Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)

Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.

So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.

The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.

I will keep you informed.

Gregory, Manny, & Peaceful

Going to the Movies

Last February I was about to cancel Gregory's cell phone since he would not be needing it anymore. I found out that Manny, his private day care person, was using a "pay-as-you-go" cell phone and it was costing him a lot more than I was paying for Gregory to be part of my family plan. So I gave Manny the phone as a perk to his working for us.

With the advent of the iPhone 6 and 6+, the cost of the iPhone 5 plummeted to 99¢ so I bought one for Manny. He is tech savvy so I knew he could make good use of a "smart phone." As an additional perk I still pay for the service and the data but it is WELL worth it because Manny is so good to and for Gregory.

Here is a photo that Manny sent showing the first re-blooming of the Cyclamen Gregory has in his room.

And here are two movies (similar to each other) that Manny sent to me via text. You will see a bit of Gregory's "French Man" routine.

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Today at Lieberman

Today is Bosses day. Manny, who is so considerate and gentle with Gregory, is also very thoughtful. He brought Gregory and me a miniature potted rose bush with a sign that said, "Happy Bosses Day!"

While covering Gregory with a blanket as he settled down to a nap, I accidentally hit him in the head with Peaceful, his Teddy Bear. It didn't hurt but Gregory appropriately and loudly announced, "Boink!"

When offering him a selection of chocolate from the Godiva box, he told me, "You pick. You have good taste." As usual he enjoyed his chocolate savoring each bit for a long time with his eyes closed.

I have put together a "Memory Book," filled with 8x10 photographs of our parents, family, friends, and pets. He seemed to enjoy seeing all the familiar faces but wasn't sure what he needed to do with the information. I assured him that he just had to enjoy the memories and love. He relaxed.

I made the mistake, which I will not make again, of telling him (as we looked at the photograph of Broadway, our first cat who died some 30 years ago) that Broadway was dead now. A look of utter sorrow took over his face as the tears poured down his cheeks while he muttered, "I didn't know. No one told me. I didn't even know."

I felt so sad for him. It was as if he had found out for the first time that she was dead. I held him close and we rocked for a while until he settled down. From now on when looking at photographs I will not place the person or pet as alive or dead. No need to know.

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.