FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Wednesday, April 30, 2014
Sunday, April 27, 2014
Italics is what was discussed at meeting.
CHECK and CHANGE: How going? Records/regularity? (Being kept by RCAs) Hover over chair or in bed? (Depends on need) When changed how cleaned? (Warm cloth and special soap) Is special soap used so rinsing doesn't affect his skin? (Yes) Is “tushie cream” used every time? (Yes)
I also purchased a woman's urinal box which seems to be angled more appropriately thus allowing Gregory to urinate while sitting. Also, we can try a "penis friendly" urinal which I created using a collapsible, flexible silicone funnel attached to a water bottle.
We went back and forth on "standing, sitting, walking" regarding safety for Gregory as well as the staff. I fought for not "giving up" on him yet even though PT/OT thinks he must always be in the wheel chair and moved with the Hoyer lift. We compromised in that there will be a new screening and review by PT/OT. Also a new kind of wheel chair without foot pedals will be tried which might allow Gregory to "walk" himself around the unit.
Teeth brushed. When? How often? By whom? Doesn't seem to be happening.
Even before my mention, it was noticed that Gregory has lost some weight and has been put on mealtime "double portion." If Gregory is ever still hungry, Manny should ask for seconds. If none at station on floor, worker will go down to the main kitchen. There is ALWAYS more food available!
We talked about adult life time usual 155lb weight, his recent developing a "little belly" 180lb weight, and his current 167lb weight. Will keep an eye on what his NEW optimum weight might be.
Will add more fresh fruit and veggies.
Saturday, April 26, 2014
Friday, April 25, 2014
Thursday, April 24, 2014
My life right now, who I am, is so complicated with such mixed emotions. I asked my therapist how I could be feeling such dichotomous emotions and he said the answer is "Wisdom."
Emotions are not separate but rather opposites along a continuum. In and of themselves, emotions are not good or bad. They just are. To be complete we need to acknowledge all of our emotions while trying to keep them in balance. Allow for happiness. Allow for sadness. Try to stay somewhere in the middle.
I love my solitude, I miss Gregory. I love having the condo to myself, I wish he was here with me. I like making decisions by myself, I have no one to rely on. I feel such joy at the same time I feel such despair and loneliness.
If I look through Gregory's eyes, I am at peace. When I look through my own, I am at turmoil. I have always had a life of my own and separate friends and personal goals/ambitions but I would love to be able to share their progress with Gregory like I used to.
I yearn to cuddle in his arms at bedtime. I miss a good FUCK. I miss a good back rub. I miss sharing my feelings after watching a movie. I miss eating half my dinner at the restaurant and then switching and enjoying the new tastes in his half. I miss his help carrying the groceries in from the car. I miss his company while waiting in the lobby for a doctor's appointment. I miss his patience with me. I miss his supporting and encouraging me to be who I am.
I am doing a fairly good job of living in the here and now like Gregory is doing, know in my heart that HERE and NOW is all we really have, but find myself wondering if I should be dealing with or thinking about the future. To be honest I cannot imagine a future.
Wednesday, April 23, 2014
Monday, April 21, 2014
This weekend, knowing that Gregory was fully covered by helpers Manny and Alaksh, and while knowing that he is always very happy to see me, he would probably not realize my absence; I decided to go to Battle Creek to visit his family over the Easter weekend.
Besides getting to see the family, I looked forward to my first getaway in over a year! Just knowing I could get into the car and take off, with relatively no worries, stop when I wanted to for lunch, antique shop along the way, and get to spend time with people I love was wonderful. The food was good (Colleen is a great cook) and I slept well. Shared a lot of conversation with everyone and laughed a lot.
But driving the four hours and passing so many places that Gregory and I used to comment on or stop at found me muttering, "This is just not fair!" Visiting without him at my side, even when in the past it was getting more and more difficult, is something I would love to be able to do again. Just not fair that Gregory will never again be able to go to Michigan to visit his family. Just not fair that we will not be able to stop in Michigan City at the Antique Market Mall. Just not fair that we will not be able to visit "Chocolate World."
I find that when I am able to separate now and then, I do well. When I do not think about Gregory when I am without him, I do OK. When I do not think about the rest of my life and the life we had together while I am with him, I do OK. But when the two cross over, the tears rise and at times overflow.
When I am at Lieberman giving him a manicure, or watching South Pacific again (and again,) or helping him with dinner, or just holding hands; I can hold my own if I do not think of home, my current life, or the past.
When I am at home I enjoy the solitude of the condo; the ability to easily take care of myself without having to do much planning; choosing when, what, and where I want to have a meal; I can hold my own if I do not think of Gregory and Lieberman.
When I am truly able to live in the "here and now," much like Gregory is able to do, I can hold my own.
But over the Easter weekend, I found myself saying "This just isn't fair" a number of times as I helped bring family up to date on Gregory's situation, at the Easter dinner so lovingly and beautifully prepared and served, when I rolled over in bed in "our room" at Mark and Colleen's realizing that Gregory was not there with me.
There are so many "This just isn't fair's" that I could make along list. But I choose not to do so here or to do so now because I would not be able to hold my own and I need to!
Monday, April 14, 2014
"What about me?" he would ask every time someone walked past with a plate of food. "I'm Eddie Goldberg, nice to meet you," he would declare to you. When asked how he was doing his answer was always, "Fine thank you very much."
One day when Eddie was feeling kind of grumpy and down, I reached over and held his hand. He held it back with love, affection, and meaning and his grumpiness disappeared. We held hands throughout the entire meal.
Eddie began to fail quickly after a possible stroke. He spent a week in the hospital, returned to Lieberman, and seemed to recover a little. He lost his feistiness and seemed a little more distant than before.
Yet he continued to respond to "How are you Eddie?"
"I am fine, thank you very much."
Eddie passed away early this morning. He will be missed. Fitting that he left us on Passover, not because of the "Slaying of the first born" for which the holiday is known as the Jewish people escaped from slavery in Egypt but more for the "Rebirth and Passage from Slavery to Freedom!" RIP Eddie Goldberg. And thank YOU very much!
Saturday, April 12, 2014
A similar occasion happened with Gregory and me the other day and my first reaction was, "I do not want him to fall in love with a haggle toothed, old woman with dementia. " As soon at that thought crossed my mind I had to laugh at my bias. But the difficulty goes deeper, as the Social Worker and I discussed.
Here is the story. First report I received was that a new resident had taken a fancy to Gregory and during morning activities was holding his hand. My first encounter with her was later at lunch. I did not like her at once. She was aggressive, demanding, pushy, and "old, haggle toothed and demented" which turned out to be besides the point.
She approached our table, walking her wheelchair towards us, saying in a loud voice, "Hi Gregory." Gregory did not respond as he often is not available to these around him and he was concentrating on eating his lunch. As she got closer, she more aggressively repeated "Hi Gregory" in a tone that was expecting and demanding a reply.
I intervened, "I don't think Gregory can talk right now as his is involved in eating his lunch."
"Oh yes he can!" she demanded. I repeated the exact words a second time and she repeated her exact words a second time. This went back and forth at least four or five times, as if we hadn't heard each other.
With dementia patients, one's form of communication is different from the norm so while it may have been weird to encounter this woman's and my interaction, I think I reacted well.
Finally, however, I said "You cannot bother Gregory right now!" and she left the dining room. End of encounter.
Later that day I was with Gregory at dinner time. The Social Worker asked me if she could have a word and we stepped out into the hall. "There was an incident with Gregory this afternoon. The new woman, who has taken a fancy to Gregory, took his hand and was rubbing her breast with it.
One of the Resident Care Assistants noticed, separated them, and came to me. We had a meeting with all of the staff this afternoon about the incident. In itself, these things happen, but because Gregory cannot advocate for himself, we will advocate on his behalf.
The staff will make sure that the the woman and Gregory will not come in contact with each other. Also her room will be moved to another wing (currently her room was two doors down from Gregory's.)
I thanked her for the staff's being on top of the situation, assured her that I understood the situation and was not upset, and was impressed with the idea of the staff advocating on Gregory's behalf.
So I think that I am still OK with the possibility of Gregory's finding someone he likes/loves, even if it is a demented older woman. What bothered me was that this woman was mean, aggressive, and inappropriate in the way she was meeting her needs. Gregory could not defend himself and I did not want her hassling Gregory.
With all this said, I now say this honestly if not somewhat tongue in cheek: If Gregory is to fall in love with someone else, I at least want her to be a nice, kind person whom I can approve of. I do not care if they are the same religion and I do not care if there is a great age difference, I only want my Gregory to be happy.
There are millions of stories in the big city that is the closed world of dementia and The Lieberman Center and this was just one. Lieberman once again proves itself to be a wonderful environment for Gregory. My heart is light. Another day, another story.
Friday, April 11, 2014
"What wedding?" asked J, who sits across the table.
"No, I just told Gregory that I cancelled my dentist appointment."
"Oh, you still have those."
"Shut up, FUCK you!" A shouted for no apparent reason.
"Help me, help me!" A woman loudly shouted through the entire meal.
"I want to go to the bathroom, " spoken in a loud voice.
"Stop yelling," aimed at no one in particular and everyone in general.
"You didn't eat your vegetable, B." I said.
"I'm watching it." replied B.
"What are you watching it for?" I asked.
"I am waiting for it to move." replied B, "One move and it could jeopardize us all!"
"Be quiet," a woman aimed at no one in particular and everyone in general.
"I'm stuck here. How do I get out?" inquired another woman.
"Who do I pay for the meal? I am confused." asked someone nearby.
"I have to pee!" urgently stated.
Still no background music for this Fellini movie!
Thursday, April 10, 2014
When I am with him at Lieberman, if I think about the man Gregory used to be as recently as last Christmas, or if I think about Gregory while I am at home and compare that to the man he used to be as recently as last Christmas, or if I spend too much time thinking about what our relationship had been like over most of the last 39 years, or if I by chance catch a photograph of our earlier days; I might as well stop writing this post and sob and scream and dash my body against the walls and throw myself into bed depressed not to emerge for days or weeks, if ever.
Maybe some day I will be able to think more about Gregory and my past, and revel in the memories of our beautiful time together. But for now I need to focus on the here and now, as Gregory seems to be able to do, and enjoy our beautiful time together now, today, here and now.
It is not easy seeing him in his wheel chair: immobile, unable to toilet himself, unable to feed himself, now and then tremoring, needing to concentrate on how to get the water through a straw or bite a piece of sandwich, not being able to use words to share his thoughts, crying unexpectedly, so focused on some far off object or through that even I cannot get a response; all this surrounded by 70 to 100 year olds who are worst off than Gregory and sometimes in the midst of their cries and shouts and anger and confusion and shit smells and food messes clinging to the napkin tucked around their neck.
But what I am able to see, so this is what I focus on, is a community in which Gregory feels safe, loved, taken care of, provided for, having limited wants and needs. Gregory is past the point of clinging to fears, unnecessary expectations, the past or future, holding on to the need for "things."
What I am able to experience is how he brightens up when he sees me or a visitor, how he is able to smile and tell me he loves me, how he tells Pat, "You are beautiful." or Cheryl, "Oh, it is you!" or Jan, "Oh wonderful." or me when at dinner I told him I needed to talk to the Social Worker and that I would be right back, "Oh that would be lovely."
I look forward to his hugs and with some delay in sound his large smacks of a kiss on my cheek. We can hold hands for hours and watch "South Pacific" over and over again on the TV in his room. I can offer him a piece of chocolate or a cookie and he is delighted. I can take my leave telling him I will see him tomorrow and he will acknowledge with an, "OK."
For now this is all I need and I relish each moment because I know that even these minimal interactions will disappear. But what I can hold onto is our love for each other, maybe at a later date our memories, and to the knowledge that all of his needs are being beautifully taken care of by a huge team of people who care. While Gregory's illness has gotten worse, his situation has gotten better!
Monday, April 7, 2014
I will be honest in that I used to think these kind of pretend events were pathetic. Noisy. People not aware of their surroundings. An attempt at bringing life to the dead. I do not mean to be mean, just honest.
Now, I enjoy these event whole heartedly. Each person IS aware in their own way at their own level. The noise is inevitable but does not distract. The music did bring life to the dead and much more.
In the future, I will work at not judging before I am an integrated part of an experience.
Saturday, April 5, 2014