We measure lives not in time
But in grace-
In the joy with which they lived
And in the love-
Which they leave behind.
~ Anonymous
Showing posts with label Grace. Show all posts
Showing posts with label Grace. Show all posts
Tuesday, June 30, 2015
Sunday, April 1, 2012
Checking It Out
Periodically I find myself checking out my cognitive abilities. I forgot to flush the toilet? I left the cabinet door open? I didn't start the full dishwasher after I put the soap in? I can't remember that guy's name?
No, that's not Alzheimer's or Dementia of any sort. That is just growing older and trying to do it with grace.
No, that's not Alzheimer's or Dementia of any sort. That is just growing older and trying to do it with grace.
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.
Wednesday, June 15, 2011
Managing our Finances
When asked for a survey,
I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.
- What was it that happened that made you realize you needed to take over your loved one’s finances?
- What did you expect it would entail? What does it really entail?
- If you have been doing this for awhile now, what do you wish you knew then that you have learned now?
I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.
I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.
Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.
What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest and before you know it that elephant will have turned into dinner. YOU CAN DO IT!
Monday, April 18, 2011
Grace
In response to yesterday's post, Lynn commented: "Sometimes the greatest victory is getting through your day with some level of grace, regardless of what is actually accomplished."
Yes Lynn, I agree that one always needs to keep an eye on "Grace." However, sometimes the problem is not a question of "getting things accomplished" but rather "getting through the craziness that is Alzheimer's."
Metaphorically, the person with Alzheimer's is not "running on all cylinders" so they don't notice how they are running. The caregiver is running on all cylinders and sometimes therefore, the emotions kick in before the intellect. This causes interactions in which love, respect, kindness, patience, understanding, etc suffer.
Then Grace takes the form of apology. I believe the key, as you say Lynn, is "SOME LEVEL" of grace. One cannot always be perfect, even though we try : •)
Yes Lynn, I agree that one always needs to keep an eye on "Grace." However, sometimes the problem is not a question of "getting things accomplished" but rather "getting through the craziness that is Alzheimer's."
Metaphorically, the person with Alzheimer's is not "running on all cylinders" so they don't notice how they are running. The caregiver is running on all cylinders and sometimes therefore, the emotions kick in before the intellect. This causes interactions in which love, respect, kindness, patience, understanding, etc suffer.
Then Grace takes the form of apology. I believe the key, as you say Lynn, is "SOME LEVEL" of grace. One cannot always be perfect, even though we try : •)
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