Every now and then a musical piece comes along that not only brings memories of Gregory and our relationship to the front but does so with tears. This is one of them:
Showing posts with label Good. Show all posts
Showing posts with label Good. Show all posts
Sunday, June 28, 2020
Friday, June 2, 2017
The Good and the Bad of Dementia
My friend Kate, whom you have met previously a number of times, recently posted a look at the difficulties of living with Dementia as well as the good parts:
CLICK HERE FOR KATE'S BLOG. (Opens in a new window)
This is my reply to her post:
Thanks, Kate. The metaphors of a "Gravitron" and a "Dementor" are painful but well placed. Richard Taylor's list really causes those of us who are "Non-Dementia-ed" to be more understanding, patient, accepting, supportive, etc and it also makes us more loving if only because of being able to better understand what the "Dementia-ed" are going through.
You say for you "I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow."
I know all of those and experienced them with Gregory, we both felt most of them, and I respect that these are your feelings, but if I may please say ... humiliation and embarrassment should not be allowed on your list! The changes that cause them are not your fault, not in your control, and I would guess that allowing people to see your "padding" helps them to love you all the more!
For example, I know how "humiliated and embarrassed" Gregory could have been at having to pee and shit himself when he could no longer get to the bathroom on time, even with help; but there was no cause because for him to feel bad as it just was, so we cleaned up, and kept on keeping on. Anyone who would have made him feel "less than" would have INSTANTLY been excluded from our life!
Other items in your list can be softened with loving, caring people in your life; like confusion and frustration easy by leaning on a friend to help or on one's "BUB." Loneliness doesn't have to take the front when those you love continue to be there for you no matter what. (Literally FUCK the others!) Sadness, yes ... but also lots of joy and gifts! Anger and irritation can help get difficult emotions under control rather than leading to denial. Accepting the changes and calling them out for what they are, increases acceptance. Who in their "right mind" would not be angry!
Finally, worry! Ah yes, WORRY! The great destroyer of happiness and sleep! The sage advice must be remembered, "Do not worry over those things you cannot change." A waste of time! So true. But I also found that "working at not worrying" was also a waste of time and in effect was a different form of worrying! Between the time we received Gregory's diagnosis and his death, there were so many things we worred about and or "worked at not worrying about" THAT NEVER EVEN CAME CLOSE TO HAPPENING! As we saw the first few worries skipped over, we began to accept most changes more easily.
For me as lead part of the caregiver team, the list of difficulties would probably boil down to one; the feeling of helplessness at making everything OK for Gregory (and for you for that matter, or anyone with Dementia!) When Gregory was happy and content, so was I. When he was overwhelmed emotionally, so was I. As he changed, so did I and this way both of us felt that all was OK. And it was. If I had to tally the difficulties, hard times, sorrow, sadness, and tears from the gifts, the gifts, joy, happines, and laughter would win out!
As I see it, you have met, my dear dear wonderful Kate, your mission multi-fold times with the so many people your life has touched and which your brave words of wisdom read by so many have helped. And your success must it not be tens of thousands and maybe more!
CLICK HERE FOR KATE'S BLOG. (Opens in a new window)
This is my reply to her post:
Thanks, Kate. The metaphors of a "Gravitron" and a "Dementor" are painful but well placed. Richard Taylor's list really causes those of us who are "Non-Dementia-ed" to be more understanding, patient, accepting, supportive, etc and it also makes us more loving if only because of being able to better understand what the "Dementia-ed" are going through.
You say for you "I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow."
I know all of those and experienced them with Gregory, we both felt most of them, and I respect that these are your feelings, but if I may please say ... humiliation and embarrassment should not be allowed on your list! The changes that cause them are not your fault, not in your control, and I would guess that allowing people to see your "padding" helps them to love you all the more!
For example, I know how "humiliated and embarrassed" Gregory could have been at having to pee and shit himself when he could no longer get to the bathroom on time, even with help; but there was no cause because for him to feel bad as it just was, so we cleaned up, and kept on keeping on. Anyone who would have made him feel "less than" would have INSTANTLY been excluded from our life!
Other items in your list can be softened with loving, caring people in your life; like confusion and frustration easy by leaning on a friend to help or on one's "BUB." Loneliness doesn't have to take the front when those you love continue to be there for you no matter what. (Literally FUCK the others!) Sadness, yes ... but also lots of joy and gifts! Anger and irritation can help get difficult emotions under control rather than leading to denial. Accepting the changes and calling them out for what they are, increases acceptance. Who in their "right mind" would not be angry!
Finally, worry! Ah yes, WORRY! The great destroyer of happiness and sleep! The sage advice must be remembered, "Do not worry over those things you cannot change." A waste of time! So true. But I also found that "working at not worrying" was also a waste of time and in effect was a different form of worrying! Between the time we received Gregory's diagnosis and his death, there were so many things we worred about and or "worked at not worrying about" THAT NEVER EVEN CAME CLOSE TO HAPPENING! As we saw the first few worries skipped over, we began to accept most changes more easily.
For me as lead part of the caregiver team, the list of difficulties would probably boil down to one; the feeling of helplessness at making everything OK for Gregory (and for you for that matter, or anyone with Dementia!) When Gregory was happy and content, so was I. When he was overwhelmed emotionally, so was I. As he changed, so did I and this way both of us felt that all was OK. And it was. If I had to tally the difficulties, hard times, sorrow, sadness, and tears from the gifts, the gifts, joy, happines, and laughter would win out!
As I see it, you have met, my dear dear wonderful Kate, your mission multi-fold times with the so many people your life has touched and which your brave words of wisdom read by so many have helped. And your success must it not be tens of thousands and maybe more!
Sunday, July 3, 2016
Saturday, June 4, 2016
In The Moment
In the moment. Experiencing the here and now. And I am not necessarily comfortable with this.
After a thorough Thai Massage yesterday with massage therapist Sarah McLaughlin, with whom I have been working for, what, five years now; I got into my car, completely relaxed, and feeling a strange feeling. I stopped as I was sitting in the driver's seat, car yet unstarted, to think about what I was feeling. It was an uncomfortable feeling. It wasn't a good feeling or a bad feeling. It wasn't filled with happiness or sadness. It just was. But it was uncomfortable.
I realized that besides scattered bits of conversation with Sarah during the hour long massage, my world had stopped. It had stopped except for the sensations of my body being stretched, pushed, pulled, rotated, massaged. My mind focused on each part as it was manipulated. I sensed the pain, and the good feelings, and the tensing and release of muscle. But I did this without labeling the sensation or the body part.
I didn't need to label my arm and the muscle tension slowly disappearing, I just was focused on the moment. I did not label each hip in turn or the pain and release which radiated from the hip towards the knee and at times on opposite sides of the body. I just focused on the moment.
Today I had a similar experience. After catching up on e-mails, paying a few bills; after updating my iPad and iPhone including a call for help from Apple SOS; a light breakfast of toast and yogurt and later another cup of coffee; a brief nap, one or the other of the cats chasing each other, rubbing my leg for attention, or a yawl or purr; running a few loads of laundry and folding the results; I decided to lie down for half an hour before meeting a friend for dinner in the neighborhood.
As I lie in bed, still in m P.J.s, I experienced this "In The Moment" again. I felt the crisp smooth sheets against my body, the nubs of the cotton blanket under my fingers, the soft pillow supporting my head, the sound of the HVAC, the gurgling of the water in the cat fountain located in the bathroom just opposite my bed, the soft fur of the cat lying next to me and slightly leaning on my thigh while cleaning herself.
As an exercise, recently studied in one of my Buddhist books, I tried to experience each physical feeling and each auditory experience without labeling the object or the noise. I actually was able to do this. But agin, like yesterday in the car, it felt uncomfortable. Not good or bad, I just didn't like the experience.
So I stayed with that thought to see why I was feeling uncomfortable. I did not want to label the experience GOOD or BAD but was disturbed that I was uncomfortable. An awareness came to me. I am so used to the sounds around me, and distraction, and all sorts of odd jobs and activities, always doing something, always thinking about how to do what is happening now or what's next, thinking about future travel plans, tonight's dinner, are the sox ready to come out of the washer and be put into the dryer.
With the ability to stop all that "noise in my head," I had truly achieved being "in the moment," experiencing the "here and now." And I was not used to this. I had experienced it while spending time with Gregory and just being focused on being with him, not what was next, not the Alzheimer's, not what I would be doing later that night. But even then the "here and now" was filled with activities of the present, even if the past and the future played no mind.
This time, it was a place I had not been before in such this way. It was so strange, foreign, uncomfortable. Perhaps even fearful. No labels, no names, no explanations or descriptions. Just in the moment. Time seemed to stop. Past and future did not exist not did the present. In some ways, I wondered, is this was death feels like? Just not so permanent?
So what is next? Not sure. Learning to become more comfortable in the absence of things and activities of life? Learning to listen more carefully to the calm that exists within me when I can turn off the "noise in my head?" Not sure. Not sure.
After a thorough Thai Massage yesterday with massage therapist Sarah McLaughlin, with whom I have been working for, what, five years now; I got into my car, completely relaxed, and feeling a strange feeling. I stopped as I was sitting in the driver's seat, car yet unstarted, to think about what I was feeling. It was an uncomfortable feeling. It wasn't a good feeling or a bad feeling. It wasn't filled with happiness or sadness. It just was. But it was uncomfortable.
I realized that besides scattered bits of conversation with Sarah during the hour long massage, my world had stopped. It had stopped except for the sensations of my body being stretched, pushed, pulled, rotated, massaged. My mind focused on each part as it was manipulated. I sensed the pain, and the good feelings, and the tensing and release of muscle. But I did this without labeling the sensation or the body part.
I didn't need to label my arm and the muscle tension slowly disappearing, I just was focused on the moment. I did not label each hip in turn or the pain and release which radiated from the hip towards the knee and at times on opposite sides of the body. I just focused on the moment.
Today I had a similar experience. After catching up on e-mails, paying a few bills; after updating my iPad and iPhone including a call for help from Apple SOS; a light breakfast of toast and yogurt and later another cup of coffee; a brief nap, one or the other of the cats chasing each other, rubbing my leg for attention, or a yawl or purr; running a few loads of laundry and folding the results; I decided to lie down for half an hour before meeting a friend for dinner in the neighborhood.
As I lie in bed, still in m P.J.s, I experienced this "In The Moment" again. I felt the crisp smooth sheets against my body, the nubs of the cotton blanket under my fingers, the soft pillow supporting my head, the sound of the HVAC, the gurgling of the water in the cat fountain located in the bathroom just opposite my bed, the soft fur of the cat lying next to me and slightly leaning on my thigh while cleaning herself.
As an exercise, recently studied in one of my Buddhist books, I tried to experience each physical feeling and each auditory experience without labeling the object or the noise. I actually was able to do this. But agin, like yesterday in the car, it felt uncomfortable. Not good or bad, I just didn't like the experience.
So I stayed with that thought to see why I was feeling uncomfortable. I did not want to label the experience GOOD or BAD but was disturbed that I was uncomfortable. An awareness came to me. I am so used to the sounds around me, and distraction, and all sorts of odd jobs and activities, always doing something, always thinking about how to do what is happening now or what's next, thinking about future travel plans, tonight's dinner, are the sox ready to come out of the washer and be put into the dryer.
With the ability to stop all that "noise in my head," I had truly achieved being "in the moment," experiencing the "here and now." And I was not used to this. I had experienced it while spending time with Gregory and just being focused on being with him, not what was next, not the Alzheimer's, not what I would be doing later that night. But even then the "here and now" was filled with activities of the present, even if the past and the future played no mind.
This time, it was a place I had not been before in such this way. It was so strange, foreign, uncomfortable. Perhaps even fearful. No labels, no names, no explanations or descriptions. Just in the moment. Time seemed to stop. Past and future did not exist not did the present. In some ways, I wondered, is this was death feels like? Just not so permanent?
So what is next? Not sure. Learning to become more comfortable in the absence of things and activities of life? Learning to listen more carefully to the calm that exists within me when I can turn off the "noise in my head?" Not sure. Not sure.
Subscribe to:
Posts (Atom)