This is my mantra and my advice to others who are dealing with being a caregiver for whatever reason; be it an elderly parent, an ill life partner, the day to day relationship and needs of a spouse, a mother for her child as he grows up.
"Be good to yourself, take time for yourself, believe in yourself, all you really have is yourself!" (Michael A. Horvich 2011)
People would always say, "You need to take care of yourself." Had figure out what that meant in the middle of the continuous crisis that is Alzheimer's. Easy for them to say but you're the one in the middle of the cyclone. But one day you learn. As you will have to do for yourself.
You need to be selfish. Selfish doesn't mean selfish. It means SELFish. If you don't take care of yourself first, you will not have the energy, time, and/or spirit to take care of others. If you are in poor health you will not be able to help others. If you are frustrated and angry, you will not be able to be organized and calm.
I have learned. One day you will too!
Friday, October 28, 2011
Thursday, October 27, 2011
From NPR
Improv For Alzheimer's: 'A Sense Of Accomplishment'
Many newly diagnosed Alzheimer's patients go through the stressful phase of realizing they are losing their memory while still having enough insight to know that, over time, they will no longer be able to care for themselves.
So a team of researchers from Chicago — a city known for improvisational theater — is testing a new idea of whether unscripted theater games can affect the well-being of these patients.
"Improv is all about being in the moment, which for someone with memory loss, that is a very safe place," says Mary O'Hara, a social worker at the Cognitive Neurology and Alzheimer's Disease Center at Northwestern University's Feinberg School of Medicine. "Maybe thinking about the past and trying to remember makes the person a little anxious or even a bit sad because their memory is failing. And maybe thinking about the future too much is also anxiety-provoking. So being in the moment is such a safe and a good place to be."
"There's no experience required, there's no script, there's no memorization," O'Hara says. "They bring to it just their creative potential. And they are so successful at this."The Northwestern researchers are working with the Tony Award-winning Lookingglass Theatre Company. There are already theater programs that use improv for Alzheimer's patients in the later stages of the disease, but this collaboration is unique because it's for early-stage patients.
Christine Mary Dunford, with Lookingglass, leads the group of novice performers in very simple improv games.
One "of the basic tenets of improv that [is] perfect for working with people with dementia [is] the concept of yes," Dunford says. "So, fundamental to all our work is that whatever answer someone comes up with, the rest of us are going to be able to work with it."
Researchers don't expect these games to stop or slow the progress of Alzheimer's disease, but they are investigating whether engaging the creative abilities of these early-stage patients improves their lives.
Before and after the eight-week program, participants and their families are asked a series of questions, checking to see how the course changes their answers.
"We're asking people to tell us how they're feeling about their physical health, their mood," says Darby Morhardt, a research associate professor at Northwestern. "How do they feel about their memory? How did they feel about their family, about their relationships? And also, how do they feel about their current situation as a whole and their life as a whole?"
"When we think of people with Alzheimer's and other dementia, we think about people who are losing skills on a daily basis," says improv coach Dunford. "But here, they're learning some new things, too.
It gives them a feeling of — a sense of self-confidence that they were able to accomplish this. And in this disease, there's not a lot of opportunity to feel a sense of accomplishment."
Update
I haven't been keeping anecdotal records nor sending out updates because usually the same things misconnect many times during a day, every day. When they misconnect differently it is usually a variation on the same theme. It all sucks! But at least it is a consistent. It SUCKs.
Same Unconscious Connections Kicking (SUCK) in.
Same Usual Chaos Kept (SUCK.)
Same Unconscious Connections Kicking (SUCK) in.
Same Usual Chaos Kept (SUCK.)
When Is It Time?
Gregory and I just had a conversation (if you can call mostly a monologue a conversation) about how we will know when it is time for him to live someplace other than in our home.
We had just had a poor interaction in which I said some things that I shouldn't have said having to do with threatening to send him "to a home" and that were hurtful to him. I apologized quickly. In short order I was calm, he was good and I again apologized saying (which I have said many times after a "fight") that our love for each other is never in question, that I am here for him, and I promised never ever to use the "going to a home" threat again. He thanked me.
"But," I said, "some time we need to talk about how we will know when it is time for you to live somewhere other than in our home."
I asked, "Have you ever thought about this before?"
"Yes," he replied.
"Can we talk about it now? Why haven't you ever talked to me about it." He replied that he didn't want to.
"I understand. It is a painful thing to talk about." I asked again if we could talk now about how we would know when it was time and he agreed that it would be a good thing.
"How will we know when it is time?"
He thought for a while and replied, "Well, it isn't for a long time yet."
We circled through that answer and my trying to get some more thoughts from him about 'when.' Never got there. Finally, he asked me, "Can you help me."
I explained that I had some ideas but had hoped to know what he thought. He was unable to gather any thoughts to share.
So I began, slowly and deliberately so he could follow, "I think that there are very few circumstances under which this decision will have to be made. Probably I (not we) will have to make it. Probably you will not be happy with the decision. But it will be the best, carefully thought out decision that I can make.
"First it would be time if I physically cannot take care of you anymore because I am unable to do so or because I cannot do a good job of taking care of your physical needs. If I had a short term illness I am sure our family and friends and maybe some hired help would be enough to let you stay at home. But any long term illness on my part would probably tell us that you need to be someplace that can take good care of you.
"Second is obvious, if I die before you.
"Third is if you become harmful to yourself or to me. One example is if you become violent. Another would be if you wander and I cannot keep track of you. If your behaviors cannot be protected like when you use a knife or medications inappropriately. Lots of things could be locked up ... but not everything.
He agreed with what I said. Soon after the tears stared, his first with mine following, and we hugged and rocked for a while. But we both readjusted fairly quickly and felt better, both agreeing that the conversation we had was an important one and glad that we had it. I again promised that I would never out of anger or frustration threaten to put him in a home again. He confined, "Never." Now we are getting ready to go out to dinner. Life continues.\
In writing this and proof reading it several days after the fact, I realize that our conversation had a bigger impact on me than it did on him. He is able to continue in his "fog" which is not always a bad place to be. I live with the eventual reality of the of having to make one of the most difficult decisions of my life. And I am sad.
We had just had a poor interaction in which I said some things that I shouldn't have said having to do with threatening to send him "to a home" and that were hurtful to him. I apologized quickly. In short order I was calm, he was good and I again apologized saying (which I have said many times after a "fight") that our love for each other is never in question, that I am here for him, and I promised never ever to use the "going to a home" threat again. He thanked me.
"But," I said, "some time we need to talk about how we will know when it is time for you to live somewhere other than in our home."
I asked, "Have you ever thought about this before?"
"Yes," he replied.
"Can we talk about it now? Why haven't you ever talked to me about it." He replied that he didn't want to.
"I understand. It is a painful thing to talk about." I asked again if we could talk now about how we would know when it was time and he agreed that it would be a good thing.
"How will we know when it is time?"
He thought for a while and replied, "Well, it isn't for a long time yet."
We circled through that answer and my trying to get some more thoughts from him about 'when.' Never got there. Finally, he asked me, "Can you help me."
I explained that I had some ideas but had hoped to know what he thought. He was unable to gather any thoughts to share.
So I began, slowly and deliberately so he could follow, "I think that there are very few circumstances under which this decision will have to be made. Probably I (not we) will have to make it. Probably you will not be happy with the decision. But it will be the best, carefully thought out decision that I can make.
"First it would be time if I physically cannot take care of you anymore because I am unable to do so or because I cannot do a good job of taking care of your physical needs. If I had a short term illness I am sure our family and friends and maybe some hired help would be enough to let you stay at home. But any long term illness on my part would probably tell us that you need to be someplace that can take good care of you.
"Second is obvious, if I die before you.
"Third is if you become harmful to yourself or to me. One example is if you become violent. Another would be if you wander and I cannot keep track of you. If your behaviors cannot be protected like when you use a knife or medications inappropriately. Lots of things could be locked up ... but not everything.
He agreed with what I said. Soon after the tears stared, his first with mine following, and we hugged and rocked for a while. But we both readjusted fairly quickly and felt better, both agreeing that the conversation we had was an important one and glad that we had it. I again promised that I would never out of anger or frustration threaten to put him in a home again. He confined, "Never." Now we are getting ready to go out to dinner. Life continues.\
In writing this and proof reading it several days after the fact, I realize that our conversation had a bigger impact on me than it did on him. He is able to continue in his "fog" which is not always a bad place to be. I live with the eventual reality of the of having to make one of the most difficult decisions of my life. And I am sad.
Thursday, October 20, 2011
Gentle as a Baby
Here is another UNITY message from the Daily Word that resonated with me:
Thursday, October 20, 2011
GENTLENESS
With a gentle spirit, I care for myself and others.
When I hold a newborn baby, I am gentle and caring. This new life is fragile and should be lovingly cared for. The same principle applies to myself and to others.
Today I focus on being gentle and kind. I am mindful of words and behaviors that might be rude or critical. In my interactions with others, I speak lovingly and quietly. I treat others with dignity and respect.
I am gentle with myself also. I slow my pace and take time to breathe. I walk with an ease of spirit and an awareness of God Life. I release worry or anxiety and see myself in a positive way. As I am gentle with myself and others, I find that my thoughts are peaceful and my life flows smoothly.
To speak evil of no one … to be gentle, and to show every courtesy to everyone.--Titus 3:2
Monday, October 17, 2011
Mariah
Mariah - also known as Little Bit, our American Short Hair with her smoke coat and sweetest disposition, after a month struggle with renal failure and old age died today. She will be missed.
Michael & Gregory
Thursday, October 13, 2011
Conjugation
Grammatical conjugation is the the variation of the form of a verb in an inflected language such as Latin, by which are identified the voice, mood, tense, number, and person. In Spanish an example of conjugation of the verb hablar (to speak) is hablo, hablas, habla, hablamos, hablais, hablan. Translated into English it is present tense I speak; you (informal speak;) you (formal) speak; he, she, or it speaks; we speak, you (plural informal) speak; they (you plural formal) speak.
One can do the same for past tense (hable,) I spoke; imperfect tense (hablaba,) I speak (over time;) future tense (hablare,) I will speak; subjective (hablara,) I will have spoken; etc.
In English, we are not as aware of verb conjugation because the verb changes very little and we use the pronoun to help. For example: to run: I run; you run; he, she, it runs; you (singular) run, we run, they run, they (plural) run. The verb form keeps to "run" or "runs." Much easier in English.
Sometimes I enjoy the nonsense of conjugating English words because you can conjugate them and it doesn't really matter to their use. This whole treatise lead me to a poem dealing with Gregory's Alzhiemer's. A long trip but here we are:
I walk
You walk
He walks
We walk
The path together.
Wednesday, October 12, 2011
Monday, October 10, 2011
Sunday, October 9, 2011
Wednesday, October 5, 2011
Response to "A New Observation"
This response arrived in my e-mail from my niece C.M.
This was my response to her response:
Loved (and appreciate) your response. You were able to cast a lighter "air" to it, which was greatly appreciated. In some ways you are right. What you don't witness is that he still wants to be vital, do things for himself, thinks he knows what he is doing, needs a level of independence and self respect. I cannot take that away from him which is what causes the dilemma in the first place.
I seem to remember an observation scale from my education days that went like this: NEVER, SELDOM, ONCE IN A WHILE, SOMETIMES. OFTEN. USUALLY. ALWAYS. And then that can be applied to "Ability to do something." and "Inability to do something." This is what makes Alzheimer's Disease (and any Dementia) so insidious.
Sometimes. Never. Usually. Whatever. Not possible:•) WHIMSICAL
The enabler in me says phuck it and just do everything for him to make the most stress free environment possible. But then the other side of that coin is the new stress it puts on you to do yet even more than you already do. But then it would be eliminating a different kind of stress so maybe there would be balance in that scenario. It seems to me during our last visit that more and more, Greg welcomes decisions being made for him.Sometimes. Never. Usually. Whatever. Love you more.
This was my response to her response:
Loved (and appreciate) your response. You were able to cast a lighter "air" to it, which was greatly appreciated. In some ways you are right. What you don't witness is that he still wants to be vital, do things for himself, thinks he knows what he is doing, needs a level of independence and self respect. I cannot take that away from him which is what causes the dilemma in the first place.
I seem to remember an observation scale from my education days that went like this: NEVER, SELDOM, ONCE IN A WHILE, SOMETIMES. OFTEN. USUALLY. ALWAYS. And then that can be applied to "Ability to do something." and "Inability to do something." This is what makes Alzheimer's Disease (and any Dementia) so insidious.
Sometimes. Never. Usually. Whatever. Not possible:•) WHIMSICAL
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.
Monday, October 3, 2011
Feline Alzheimer's
Cats, like their human companions, are living longer, and like people, can get diseases of old age such as arthritis, high blood pressure, kidney problems and dementia.
Read more at Suite101: Does Your Cat Have Alzheimer's?: 10 Symptoms of Feline Dementia | Suite101.com http://sue-cartledge.suite101.com/does-your-cat-have-alzheimers-a42499#ixzz1Zl8qmEjn
10 Clues that Your Cat Has Dementia
1. Spatial disorientation or confusion - getting trapped in corners or forgetting the location of the litter box. House-soiling is the most common reason for referral of old cats to animal behaviouralists.
2. Altered relationships either with their owners or other pets in the household - increased attention seeking or aggression
3. Increased irritability or anxiety, or decreased response to stimuli
4. Changes in sleeping patterns
5. Inappropriate vocalisation such as loud crying at night
6. Loss of memory, such as forgetting commands or breaking house training
7. Changes in activity - aimless wandering or pacing, or reduced activity
8. Lack of interest in food, although some cats actually want more food.
9. Decreased grooming
10. Confusion about time, such as forgetting that they have just been fed
Cats with CDS or feline dementia can still enjoy life if their symptoms are recognised early enough. Treatment options include:
- food fortified with antioxidants and vitamins,
- a stimulating environment with toys and playtimes with their favourite human
- medications prescribed by the vet.
However cats who have advanced dementia or CDS need to feel safe, and might not cope with changes to their food or routine that could frighten or confuse them.
Such cats should have a safe quiet space, perhaps just one room, where they can find everything easily and feel in control.
Dr Gunn-Moore also suggests applying synthetic feline appeasement pheromone to the cat’s rug or cushion can help to calm stressed or nervous animals.
Read more at Suite101: Does Your Cat Have Alzheimer's?: 10 Symptoms of Feline Dementia | Suite101.com http://sue-cartledge.suite101.com/does-your-cat-have-alzheimers-a42499#ixzz1Zl8qmEjn
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