The Gregory we know and love only exists in our memories now. He is still handsome although seems older. He is still playful although on a simpler level. He responds and replies but at a lower level.
His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.
He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.
He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.
He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.
Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.
I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears, to live for the loss.
Showing posts with label Experiences. Show all posts
Showing posts with label Experiences. Show all posts
Tuesday, January 28, 2014
Saturday, July 6, 2013
Indelible
indelible |inˈdeləbəl|adjective(of ink or a pen) making marks that cannot be removed.• not able to be forgotten or removed: his story made an indelible impression on me.DERIVATIVESindelibility |-ˌdeləˈbilitē|noun,indelibly |-blē|adverbORIGIN late 15th cent. (as indeleble): from French, or from Latin indelebilis, from in- ‘not’ + delebilis (from delere ‘efface, delete’). The ending was altered under the influence of -ible.
Recently, I experienced three indelible events.EVENT ONE: Gregory and I were at Northbrook Court to buy him a birthday gift and for lunch. My meal of pan fried, almond crusted chicken in a ginger and orange sauce was delicious. Gregory's lemon sautéed Sea Bass started out delicious.As usual, we each eat half, switch, and then enjoy another taste palate. It is fun to share meals. I was about half way through my half of Gregory's Bass when I took a bite that tasted like I had just sipped a shot of AMMONIA. I chewed a little more and had to spit it out quickly. It tasted so strongly of ammonia that I almost retched. Luckily we were at the end of the meal, paid the check, and left. Every time I thought of the taste I had experienced, my stomach did a summersault. In the car I ate a few cinnamon mints and that helped. For the rest of the evening, I felt a little off. I hadn't eaten enough to call it food poisoning but it left an indelible mark on my mind. I looked at the situation on google and this is what it said: It is also what their flesh produces in decay, so if they smell of ammonia it is either a sign of being unfresh, or in closed, unsanitary tanks (where they are so saturated with their own waste they smell of it) In either case, if you're in a restaurant, ammonia smelling fish is definitely a reason to send the dish back and take the chef de cuisine to task. Next time I will send it back even if it is at the end of the meal.EVENT TWO:Gregory and I had a massage last Friday. We drove to the location, arrived early, and parked for about 5 or 10 minutes. We were listening to the end of a classical piece on the radio when I noticed the air smelling a little rank. I accused Gregory of having farted but he denied it.When it was time for the massage we got out of the car, locked it up, and walked over to the massage appointment.As we returned to the car and I was about to open the door to let Gregory in on the passenger side, I noticed a dead rat at the curb right under the passenger door. It must have been 18-20 inches long counting the tail and 4 to 6 inches at belly wide. I told Gregory to wait on the sidewalk so I could back the car up and he could get in without having to step over the rat. Meanwhile the car had been sitting over this decomposing pile of dead rat for over two hours and in the time it took me to back the car up and open the windows I started to gag from the smell. Cinnamon mints to the rescue again. I felt a little "sick" for the rest of the afternoon. Not a nice way to spend a lovely afternoon of massage. Indelible. EVENT THREE:Gregory's Alzheimer's Disease. Enough said. Indelible!
Recently, I experienced three indelible events.EVENT ONE: Gregory and I were at Northbrook Court to buy him a birthday gift and for lunch. My meal of pan fried, almond crusted chicken in a ginger and orange sauce was delicious. Gregory's lemon sautéed Sea Bass started out delicious.As usual, we each eat half, switch, and then enjoy another taste palate. It is fun to share meals. I was about half way through my half of Gregory's Bass when I took a bite that tasted like I had just sipped a shot of AMMONIA. I chewed a little more and had to spit it out quickly. It tasted so strongly of ammonia that I almost retched. Luckily we were at the end of the meal, paid the check, and left. Every time I thought of the taste I had experienced, my stomach did a summersault. In the car I ate a few cinnamon mints and that helped. For the rest of the evening, I felt a little off. I hadn't eaten enough to call it food poisoning but it left an indelible mark on my mind. I looked at the situation on google and this is what it said: It is also what their flesh produces in decay, so if they smell of ammonia it is either a sign of being unfresh, or in closed, unsanitary tanks (where they are so saturated with their own waste they smell of it) In either case, if you're in a restaurant, ammonia smelling fish is definitely a reason to send the dish back and take the chef de cuisine to task. Next time I will send it back even if it is at the end of the meal.EVENT TWO:Gregory and I had a massage last Friday. We drove to the location, arrived early, and parked for about 5 or 10 minutes. We were listening to the end of a classical piece on the radio when I noticed the air smelling a little rank. I accused Gregory of having farted but he denied it.When it was time for the massage we got out of the car, locked it up, and walked over to the massage appointment.As we returned to the car and I was about to open the door to let Gregory in on the passenger side, I noticed a dead rat at the curb right under the passenger door. It must have been 18-20 inches long counting the tail and 4 to 6 inches at belly wide. I told Gregory to wait on the sidewalk so I could back the car up and he could get in without having to step over the rat. Meanwhile the car had been sitting over this decomposing pile of dead rat for over two hours and in the time it took me to back the car up and open the windows I started to gag from the smell. Cinnamon mints to the rescue again. I felt a little "sick" for the rest of the afternoon. Not a nice way to spend a lovely afternoon of massage. Indelible. EVENT THREE:Gregory's Alzheimer's Disease. Enough said. Indelible!
Wednesday, April 24, 2013
Interesting
Tonight I thought about Gregory and my increased theater activity. During the 2012/13/14 seasons we will have subscribed to Lyric Opera of Chicago (8,) Goodman Theater (6,) Shakespeare Theatre (4,) and Light Opera Works (4.)
We have been to individual shows at Mercury Theater (1,) Writer's Theater (2,) Northwestern Interpretation Center (2,) and a few others. We have seen musicals, opera, serious drama, concerts, and master classes.
Why has there been this dramatic increase in our attendance in the theater world? So far we have seen "Sweet Charity" erroneously find and loose love, witnessed a strike for a 7.5 cents raise in "Pajama Game," saw "Cesar" killed on the Ides of March, followed a dysfunctional family as they worked out their problems in "Other Desert Cities," joined a fight for gay rights in "Teddy Farrara," spent "Sunday in the Park with George," learned to tell the truth at the "School for Lies," lived happily ever after in "Camelot," dreamt the impossible dream with the "Man from LaMancha," asked for more sir with "Oliver," followed the bread crumb path laid by "Hansel and Gretel," danced Musetta's waltz in "La Bohem," JUST TO NAME FEW.
Pretty quickly I realized why this increase. For both Gregory and me, it has been important to get out and enjoy ourselves. We usually go out to a nice place for dinner then the theater. More importantly I think it has helped our world continue to be larger as Gregory's abilities, language, communication skills, and experiences etc continue to grow smaller. The nature of dealing with Alzheimer's Disease is that the person afflicted can do less and less and the interaction with life becomes more narrowly focused.
Experiencing the magic of theater has, as the song goes in "Chorus Line," allowed things in our life to continue to be beautiful.
We have been to individual shows at Mercury Theater (1,) Writer's Theater (2,) Northwestern Interpretation Center (2,) and a few others. We have seen musicals, opera, serious drama, concerts, and master classes.
Why has there been this dramatic increase in our attendance in the theater world? So far we have seen "Sweet Charity" erroneously find and loose love, witnessed a strike for a 7.5 cents raise in "Pajama Game," saw "Cesar" killed on the Ides of March, followed a dysfunctional family as they worked out their problems in "Other Desert Cities," joined a fight for gay rights in "Teddy Farrara," spent "Sunday in the Park with George," learned to tell the truth at the "School for Lies," lived happily ever after in "Camelot," dreamt the impossible dream with the "Man from LaMancha," asked for more sir with "Oliver," followed the bread crumb path laid by "Hansel and Gretel," danced Musetta's waltz in "La Bohem," JUST TO NAME FEW.
Pretty quickly I realized why this increase. For both Gregory and me, it has been important to get out and enjoy ourselves. We usually go out to a nice place for dinner then the theater. More importantly I think it has helped our world continue to be larger as Gregory's abilities, language, communication skills, and experiences etc continue to grow smaller. The nature of dealing with Alzheimer's Disease is that the person afflicted can do less and less and the interaction with life becomes more narrowly focused.
Experiencing the magic of theater has, as the song goes in "Chorus Line," allowed things in our life to continue to be beautiful.
Everything was beautiful at the ballet.
Graceful men lift lovely girls in white.
Yes, Everything was beautiful at ballet.
Hey! I was happy... at the ballet.
Everything was beautiful at the ballet.
Every prince has got to have his swan.
Yes, Everyone is beautiful at the ballet.
Hey!... I was pretty...
At the ballet.
Everything was beautiful at the ballet.
Raise your arms and someone's always there.
Yes, everything was beautiful at the ballet,
At the ballet,
At the ballet!!!
Wednesday, January 30, 2013
Reply From My Friend
Dearest Michael,
I use that term of endearment as a former caregiver to a current caregiver. I just read your blog "Between a rock and a hard place"
The rawness of your emotions makes me feel for you so much. I must tell you I "coped" with L's behaviors with the help of antidepressants and Xanax f or anxiety, Also, after I had a stroke in 2010 you may remember he went to a nursing home. There I could still see him and most importantly touch him. Many days I stayed 6-7 hrs but I had a break when I went home.
Before the nursing home, I had a companion here 6 days a week. (We were fortunate to have Long Term Car Insurance which covered that) I guess what I'm trying to say is: Are you getting enough downtime.? Are you getting any therapy- talk or Rx's?
What happened to me when L died was that I felt so relieved for him that he was no longer so frustrated, but also for me even tho I really missed touching him. It took me months to feel comfortable with groups of other people esp. When there was much jocularity. I was beginning to come out of the fog when I found some old love/sexy letters which just got me way down again.
Now I'm volunteering in two places and in two book clubs and I'm doing pretty well. I would love to talk with you whenever you want. Let me know what times are good for you and I'll see when we can connect.
Much love and big hugs,
B
PS My son calls almost every day which helps a lot!
Sunday, November 18, 2012
Being Aware
I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.
I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.
He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)
While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.
What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.
This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.
So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ... there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.
With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.
I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.
He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)
While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.
What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.
This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.
So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ... there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.
With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.
Tuesday, March 13, 2012
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