This program from Australia was shared with me by my blogger friend Kate Swaffer. She was one of the participants. The program is an hour long (I skipped around) but well worth the watching. It will give you some perspective on what Dementia/Alzheimer's is like from the person with the diagnosis as well as some expert help and a professional look at the disease.
Meeting and reading Kate's blog has helped me a lot to understand Dementia/Alzheimer's from the other person's point of view. As mentioned in a previous blog, Gregory never was able to share what it was like to be going through what he was going through. I could tell from knowing him in our 40+ relationship, from my day to day observations, and from my background in educations and psychology not to mention life in general.
Thanks Kate:
Showing posts with label Coping. Show all posts
Showing posts with label Coping. Show all posts
Saturday, July 4, 2015
Wednesday, January 30, 2013
An E-mail to a Friend
Dear B,
Laughs are good. Glad you enjoyed the article I sent.
In response to "How are you doing?" I am hanging in there but currently by the fingernails. G continues to fail, doesn't understand most words, so communication is difficult, so most parts of life don't work smoothly if at all. Yet so many things still do work well. It is a crap shoot and Russian Roulette at the same time as well as an opera and a circus and a freak show.
Laughs are good. Glad you enjoyed the article I sent.
In response to "How are you doing?" I am hanging in there but currently by the fingernails. G continues to fail, doesn't understand most words, so communication is difficult, so most parts of life don't work smoothly if at all. Yet so many things still do work well. It is a crap shoot and Russian Roulette at the same time as well as an opera and a circus and a freak show.
For the most part I am fine but the small explosions add up, the regrouping takes it toll, and the resilience has its cost. Sometimes I feel that I am not too "nice" to him. My tone of voice is not loving, I am impatient, I am short. I don't know when to help or how to help. I hate letting him struggle by himself but sometimes I think that is the best choice. I keep thinking I'll get the hang of it, but suspect that there is no hang! I'll keep trying.
Someday I would like to talk about what it was like towards the end with your husband, if you are up to it. I so understand how you felt towards the end of his Alzheimer's and how much you must miss him. Just to hear him say, "I love you."
While I find myself wishing Gregory dead so he does not have to face the inevitable (is that too strong a statement?) I know I'll be devastated.
For details on how we are doing check out http://mhorvichcares.blogspot.com
m
Sunday, October 28, 2012
There Are Good Days
Try as I might to post about the good days, it is most often the bad ones that send me to my computer to contemplate, to process, to poeticize.
So when you see a string of posts, you can probably guess that the marry-go-round is spinning wildly out of control.
When you see a string of NO-posts, you can probably assume that for the most part things are mostly under control and I am coping.
Under any of these scenarios you may assume that Gregory feels content, happy, and safe.
As he signs off each evening, reading aloud the words I printed on a Post-It from a poem called "The Enlightened Heart:"
So when you see a string of posts, you can probably guess that the marry-go-round is spinning wildly out of control.
When you see a string of NO-posts, you can probably assume that for the most part things are mostly under control and I am coping.
Under any of these scenarios you may assume that Gregory feels content, happy, and safe.
As he signs off each evening, reading aloud the words I printed on a Post-It from a poem called "The Enlightened Heart:"
SIMPLICITY, PATIENCE, and COMPASSION."
These are his guidelines and my aspirations.
Tuesday, August 21, 2012
The Good, The Bad, and The Ugly
Dear Family & Friends,
Often you ask, "How are you two doing?" That is always a difficult question to answer if only because the answer is sporadic, erratic, changing, and cumulative as well as formative and summative. Not to mention joyful and devastating.
As for how we are doing, at the risk of being rude, check this ALZ BLOG. The highlights of our life live here. Maybe what the blog doesn't show as often as it should is that we are coping and getting through our days successfully even though Gregory continues to decline.
I keep reminding myself to post some of the good stuff but usually the blog is a place for me to turn to to find a sympathetic ear if only it is my computer and to process my thoughts and experiences.
Hope all is well with you and as always, Gregory and I look forward to seeing you.
m&g
A List of the Good
Have watched several great movies on NETFLIX like "Little Ashes" and "Departures."
Saw "Man of la Mancha" at Light Opera Works in Evanston.
Met with a friend for a 4 hour interview and looking towards the possibility of being included in her book on Gay Issues. More on this later.
Next week we are "light walking" as part of tech rehearsal at the Lyric Opera of Chicago in which we receive free dress rehearsal tickets to all of this season's operas.
Planning on having some of the condo painted after five years of gentle and loving use.
Tonight are going to the Carillon Concert at the Chicago Botanic Garden.
Continue to create interesting (if not photogenic) dinners and baked goods.
Got good reports on our recent whirlwind of yearly medical check up, eye examination, and dental cleaning.
Continue to feel blessed about so many parts of our life.
Wednesday, October 5, 2011
A New Observation
THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
Tuesday, August 23, 2011
Let Go
I have mentioned before that I find great solace in Unity Temple's "Daily Word." Not every day speaks to me but most often it does. I also clarify that I am a spiritual person not a religious person and continue to figure out what this thing called "God" is all about. You will note below that often I "alter" the religious overtones and make them my own. I am able to take the daily word at its word level and often the words make sense to me.
I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.
Try it...
I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.
Try it...
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Tuesday, August 16, 2011
Without Warning
A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.
Wednesday, July 27, 2011
Escape
When I tell my therapist that sometimes I feel like I cannot ESCAPE the 360 of caregiving for Gregory, he helps me reword it. He says that if I was trying to escape I wouldn't be sticking it out and I wouldn't be giving my all to keep Gregory safe, content, and to maintain purpose in his life.
Perhaps what I am looking for is just a "little time away" without the caregiving sitting in a little corner of my mind needing attention. I have slowly learned to find those free moments and recognize them when they do arrive. More later.
When I leave him alone I trust he will do well (and I will continue to leave him until he does not do well) but I call in to see how he's doing. Or he can still call me when he gets into trouble. Before I leave I have to set up his meal.
When he is with me I monitor his whereabouts and sometimes have to coach his behavior. I help him choose clothes and notice the weather. I double check that his cell phone is on and that his pockets are filled. We bring water for the car. I make sure a jacket is with us if it might be cool or air conditioned. I order for him at the restaurant,
When we are fast asleep, like the good mother who knows when the new baby needs her, I am instantly awake when he needs me. Through my own exhaustion I soothe his nightmares, help calm his hallucinations, double check to make sure he is just up to the bathroom or that he does get up to the bathroom so as not to wet the bed.
I organize outings with friends and organize parties in our home because he thrives on being with people. I do all the planning, the work, and the clean up. But worth it because he loves it. We also go to movies, theater, field trips, museums, etc.
I have learned to search out those "time away" moments and to see them when they do arrive. When he is fast asleep, I am free. When he is reading in the living room, I am free. When I get involved in a good book or movie, I am free. When I go for a walk by myself and notice the flowers, I am free. When I get an hour massage, I am free. When I am holding his hand, I am free. When I remember that I do all of this out of love, I AM FREE!
Saturday, July 2, 2011
Poetry
In the next few posts, I will be quoting from and/or discussing a few of the ten poems in Roger Housden's Ten Poems to Change Your Life Again and Again 2007.
I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.
Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.
As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.
As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)
In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.
I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.
Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.
As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.
As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)
In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.
Wednesday, June 15, 2011
Existence
Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Sunday, May 22, 2011
Happy & Coping
I think I have written this before but after responding to a friend who read some of my Alzheimer's Blog and who I used to teach with many, many years ago, I felt it was worth saying again.
Again, thanks for the kind words. I like to say that on a scale of horrible to horrible it is terrible. But as you could tell from my writing, Gregory is happy and content and I am coping. We both seem to have Piece and Peace of Mind. Thus, we are doing well. I also like to say that if it stopped here I would be grateful but... and I try not to dwell too much on the future. We consider ourselves blessed and wake up each morning to face the day with love and joy. Take care.
m
I haven't been writing much as I have told you previously because of all the time, effort, work, joy, and magic of getting Michael's Museum at the Chicago Children's Museum up and running. Gregory took great joy and pride in coming to CCM with me during the month of April and the first half of May to help with the unpacking and installation of the MM exhibit. One morning he commented in the car, "I really like getting up so early and coming with, it is like I have purpose!" That sounded good to me.
Michael's Museum Exhibit Photos - Michael Horvich - Picasa Web Albums
Michael's Museum Exhibit Photos - Michael Horvich - Picasa Web Albums
Thursday, March 31, 2011
A Dream 03/31/11
There was some kind of catastrophic disaster. Fire was all around. Then there was an explosion or fire and light and on the other side life had changed. Many people including myself were burned beyond recognition but we were alive and functioning. New ways of doing thing had to be developed because people could barely move. A new language formed because people could barely talk. The interesting part is that this was NOT a nightmare. There was no pain, no fear, no depression, no anxiety. People just continued doing the best they could living their lives. Do you see a parallel with being a caregiver for or the person afflicted with Alzheimer's? I do. I also see that something that could have been a catastrophe ended up reflecting the ability of human nature to rise to the occasion.
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