Interesting. We have been spontaneously "gravitating" towards more veggies, grains, and fruits and away from red meat, pork, and poultry. Not sure that we will ever be able to totally do away with "Food With Faces" but have cut way back.
This has helped me as well as Gregory. He has always eaten "healthy" and I attribute some of his slow decline to this. I have been eating more carefully over the last ten years or so and recently joined Weight Watchers to get down to my fighting weight.
Watched a great movie (on DVD) that deals with a move to vegetables and fruit and grains called "Forks Over Knives" by T. Colin Campbell, PhD and Caldwell B. Esselstyn, Jr. MD. (There is a companion book on Amazon.)
I need to make sure I am healthy and around for a long time to be able to be Gregory's Care Giving Partner. Thanks Zeyda.
Tuesday, November 29, 2011
Monday, November 28, 2011
My Little Boy
Just got home from a fun day with Gregory at Michael's Museum. Our massage therapist, her husband, and our new friend Aaron (who is also using us for part of his phd research on Care Giver Relationships) visited CCM and MM today and then we all went out to lunch.
When we arrived home I settled in to catch up on e-mails, paying bills, etc. Gregory seemed a little restless and was rummaging around so I asked, "Is everything Ok?"
He said, "Well, no."
"What's the problem?" I asked.
"I don't have anything to play with," was the response.
Turns out he recently finished his jig saw puzzles, cleaned off his desk to make room for the Christmas decorations, and is almost finished with the book he is currently reading. In his mind, and as he becomes more and more "my little boy," he felt that he didn't have anything to occupy his time, in other words, "I don't have anything to play with." Do you feel the beauty in this? I do. It is one of the gifts of Alzheimer's!
When we arrived home I settled in to catch up on e-mails, paying bills, etc. Gregory seemed a little restless and was rummaging around so I asked, "Is everything Ok?"
He said, "Well, no."
"What's the problem?" I asked.
"I don't have anything to play with," was the response.
Turns out he recently finished his jig saw puzzles, cleaned off his desk to make room for the Christmas decorations, and is almost finished with the book he is currently reading. In his mind, and as he becomes more and more "my little boy," he felt that he didn't have anything to occupy his time, in other words, "I don't have anything to play with." Do you feel the beauty in this? I do. It is one of the gifts of Alzheimer's!
Saturday, November 26, 2011
Conversations
Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
Thursday, November 17, 2011
Past the Puzzle Plateau
In a recent e-mail to our niece and nephew:
G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"
I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.
In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.
He just seemed to gain some insight into the process and seems to be making some progress.
Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.
G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"
I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.
In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.
He just seemed to gain some insight into the process and seems to be making some progress.
Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.
m
Wednesday, November 16, 2011
Acceptance
I have previously written a piece about "Acceptance" as it relates to Gregory's dementia. I felt that while I might "get used" to his Alzheimer's diagnosis and the changes and journey we have been on, I would never "accept" it.
Several years after I had written that piece, I looked more closely at "Acceptance" and redefined it for myself. I will post my previous writing again but first wanted to post this one.
It is a look at acceptance from one of the many times that the Daily Word has "spoken" to me with words of wisdom. As usual, I have adjusted it slightly (with cross outs and red additions) to fit my point of view. See what you think.
Several years after I had written that piece, I looked more closely at "Acceptance" and redefined it for myself. I will post my previous writing again but first wanted to post this one.
It is a look at acceptance from one of the many times that the Daily Word has "spoken" to me with words of wisdom. As usual, I have adjusted it slightly (with cross outs and red additions) to fit my point of view. See what you think.
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Tuesday, November 15, 2011
Today the Belt
I have been worried about Gregory loosing his cell phone because the holster can easily slip off his belt so this morning I showed him how to run the belt through the holster. That was approximately 6 hours ago.
Now after a day at painting class is needs to change his clothes but can't get the holster off and has no idea of how to make his belt work.
"Take your belt off." did not help. He just kept pulling on the cell phone holster and even on looking closely at it, could not see how the belt was looped through. I repeated, "Take the belt off." He got the belt off except for the last pant loop and the cell phone holster loops and still could not figure out what to do. I finally showed him.
He stared and replied, "I guess that was obvious." Obviously not.
Now after a day at painting class is needs to change his clothes but can't get the holster off and has no idea of how to make his belt work.
"Take your belt off." did not help. He just kept pulling on the cell phone holster and even on looking closely at it, could not see how the belt was looped through. I repeated, "Take the belt off." He got the belt off except for the last pant loop and the cell phone holster loops and still could not figure out what to do. I finally showed him.
He stared and replied, "I guess that was obvious." Obviously not.
Monday, November 14, 2011
The Lifelong Impact of Grief
Be where you are today. Whether you are feeling extreme sorrow, anger, sadness, or even tiny flashes of happiness as you experience some blessing of being alive, be with your present state. Observe each feeling with curiosity and compassion. You will not feel this feeling exactly the same way tomorrow or a year from now. It is how you feel today, right now. Let it be, with tenderness.
Saturday, November 12, 2011
Wishes
The ceiling fan smooth and silver
Circling round and round.
Smoothly, evenly, quietly.
Wish that I could.
The black framed pictures on the wall
Sitting behind the glass.
Safe, secure, protected.
Wish that I could.
The bedside table lamp
My clicking the switch.
Shining easily, brightly, freely.
Wish that I could.
The disease called Alzheimer’s
Fostering its insidious ways.
Reeking havoc each morning and evening
Wish that I could not.
Only the Loneliness
The table no longer gets set.
No knife.
No fork.
No napkin.
The water no longer gets filled.
No glasss.
No pitcher.
No ice.
I cook the dinner.
No deciding.
No help.
No support.
The table no longer gets cleared.
No washing.
No rinsing.
No drying.
Only the loneliness
Of doing it myself
With myself
For us.
Thursday, November 3, 2011
How It Feels to Have a Stroke
This TED presentation deals with Jill Bolte Taylor, brain scientist who witnessed her own stroke from the point of view of her profession. Does this have implications for Alzheimer's?
http://www.youtube.com/watch?v=UyyjU8fzEYU&feature=youtu.be
http://www.youtube.com/watch?v=UyyjU8fzEYU&feature=youtu.be
Friday, October 28, 2011
My Mantra & My Advice to Others
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!
"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!
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
Friday, September 23, 2011
Pondering
PONDERING (Hint Poetry)
He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. More pondering.
Where will this disease take us?
Wednesday, September 21, 2011
Meal Time
For a while I was worried about preparing dinner time meals for Gregory. Dinners usually consist of a fish/chicken/meat course, one or two vegetables, potato, salad, and sometimes bread. There are condiments and spices, butter, salad dressing, salt & pepper, etc to be added table side.
I began to notice that Gregory was having trouble figuring out what to do with everything I placed in front of him and it was taking a long time before he could actually begin eating. I would hint and point and this helped sometimes but was aggravating for both of us.
I was afraid that I was going to have to simplify our meals and even had nightmares in which I served one course at a time and we didn't finish with dinner until breakfast time. Another possibility was one dish meals and I hated that idea.
Finally I came up with a solution and it seems to be working for now. I do all the dressing, seasoning, buttering, etc before we begin eating. This evening when I put the plate in front of him the beets were sliced, the green beans buttered and seasoned, the salad dressed, the bread sliced. That's all he had to do was eat the meatloaf.
He still has trouble deciding which utensil to use, fork-spoon-knife all seem to become one. Always having been neat at table, thanks to his mom Helen's training, I find that he uses his fingers more often but still appropriately.
For now, problem solved. This seems to be the way with us. Old solutions die causing new problem to arise which lead to improved ways of dealing with most situations. Hope this continues for a long time to come so I do not have to think about what the future might hold.
I began to notice that Gregory was having trouble figuring out what to do with everything I placed in front of him and it was taking a long time before he could actually begin eating. I would hint and point and this helped sometimes but was aggravating for both of us.
I was afraid that I was going to have to simplify our meals and even had nightmares in which I served one course at a time and we didn't finish with dinner until breakfast time. Another possibility was one dish meals and I hated that idea.
Finally I came up with a solution and it seems to be working for now. I do all the dressing, seasoning, buttering, etc before we begin eating. This evening when I put the plate in front of him the beets were sliced, the green beans buttered and seasoned, the salad dressed, the bread sliced. That's all he had to do was eat the meatloaf.
He still has trouble deciding which utensil to use, fork-spoon-knife all seem to become one. Always having been neat at table, thanks to his mom Helen's training, I find that he uses his fingers more often but still appropriately.
For now, problem solved. This seems to be the way with us. Old solutions die causing new problem to arise which lead to improved ways of dealing with most situations. Hope this continues for a long time to come so I do not have to think about what the future might hold.
Saturday, September 17, 2011
To Live Misfortune Down
Last night Gregory and I watched David Copperfield from the 1999 Masterpiece Theater presentation and rented from Netflix. Enjoyed it a lot and took this quote from the movie to share with you. It was spoken by Ms. Betsy Trockwood, played by Maggie Smith.
We must meet our reverses boldly
And not suffer them to frightness
We shall act the play out
And live misfortune down.
Saturday, September 10, 2011
There is a Spiritual Solution to Every Problem
This may seem tongue in cheek, it does not upset me, but rather is an observation. It is a true representation of part of the last five years of my life. The difficult part. I am aware that the wonderful, joyful, magical part far outnumbers this partial "Life Event List."
Five years ago, I identified five "problems:" 1) Gregory had been diagnosed with Alzheimer's Disease, 2) My father was quite ill and probably dying, 3) My good friend Marla had been diagnosed with a number of cancers and was definitely dying, 4) Our cat Hoover was now deaf and blind, crying a lot, and probably would not be able to make the move to the new condo, and 5) My mother's imminent death troubled me.
So far four of the five "problems" have been solved, an unexpected one occurred, and a new one was added. My father died on March 5, 2005. Marla died on March 15, 2005. Hoover died June 2007. Mom died on March 27, 2010. My Aunt Annette, a significant mentor in my life, died in August 2011.
The new "problem" is that our cat Mariah is in the throws of Renal Failure and is beginning to show signs of being uncomfortable. We will probably have to make her end of life decision soon.
Gregory is still healthy and strong, the only real "problem" left. Funny I don't think much about my own death being a "problem." I quote myself: "It all ends happily ever after."
Wednesday, August 31, 2011
What if IT happened to me?
Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.
I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack.
If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."
It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.
I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack.
If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."
It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.
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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Monday, August 22, 2011
Helpful Hints
These hints were taken from Perspectives: A Newsletter for Individuals with Alzheimer's or a Related Disorder. They were told by the person diagnosed with the cognitive imparement. See ordering information at the end of this post.
1) If someone puts me under pressure to remember an appointment, issue, or location of an item, it can almost become impossible to re- trieve the information. I will ask the person to give me some time (not under pressure) and then I can generally respond rather quickly.
2) Friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to re- member your name.
3) Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us.
4)"I find memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live to- day,”
9500 Gilman Drive – 0948 La Jolla, CA 92093
2) Friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to re- member your name.
3) Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us.
4)"I find memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live to- day,”
SUBSCRIBE TO Perspectives
The annual cost of four issues of Perspectives by surface mail is a suggested $20.00 donation or FREE by email. Please complete and mail the information below to begin a print subscription, or email lsnyder@ucsd.edu to request an electronic subscription.
Name____________________________________________ Address__________________________________________ ________________________________________________ Phone/Email_____________________________________
For surface mail, prepaid orders by check or money order only (payable to UCSD ADRC). International orders must be received payable in U.S. dollars on a U.S. affiliated bank. Please add $2.00 for postage for international subscribers. Mail to:
Lisa Snyder, LCSW
UCSD Shiley-Marcos Alzheimer’s Research Center
9500 Gilman Drive – 0948
La Jolla, CA 92093
Phone: 858-622-5800 Fax: 858-622-1012 email: lsnyder@ucsd.edu
The annual cost of four issues of Perspectives by surface mail is a suggested $20.00 donation or FREE by email. Please complete and mail the information below to begin a print subscription, or email lsnyder@ucsd.edu to request an electronic subscription.
Name____________________________________________ Address__________________________________________ ________________________________________________ Phone/Email_____________________________________
For surface mail, prepaid orders by check or money order only (payable to UCSD ADRC). International orders must be received payable in U.S. dollars on a U.S. affiliated bank. Please add $2.00 for postage for international subscribers. Mail to:
Lisa Snyder, LCSW
UCSD Shiley-Marcos Alzheimer’s Research Center
9500 Gilman Drive – 0948
La Jolla, CA 92093
Phone: 858-622-5800 Fax: 858-622-1012 email: lsnyder@ucsd.edu
Sunday, August 21, 2011
Tears of Blood
I cry tears of blood
Tears of blood
My crimson shirt conceals
The grief and sorrow.
The tears come easily
Running down my face
Flags of confusion
Banners of loneliness.
Unnoticed
Unrequited
Unreciprocated
With tears of blood, I am undone.
The red of a sunset
The heat of a flame
The sweetness of a blood orange
I am undone.
Tears of blood
My crimson shirt conceals
The grief and sorrow.
The tears come easily
Running down my face
Flags of confusion
Banners of loneliness.
Unnoticed
Unrequited
Unreciprocated
With tears of blood, I am undone.
The red of a sunset
The heat of a flame
The sweetness of a blood orange
I am undone.
Saturday, August 20, 2011
Bears and Foxes and Lions, Oh My!
This first part was previously posted on my writer's blog.
When I first started visiting Green Bay Animal Hospital, the two veterinarians who staffed the clinic were Dr. Bear and Dr. Fox. Several years later Dr. Fox went on to open his own clinic and I followed with Hoover and Mariah, our cats. Today I took Mariah in for some bladder infection problems. Dr. Fox was not in and to my surprise, the doctor on duty was Dr. Lions. I love telling people that a bear, a fox, and now a lion take care of our pets.
I am reposting it here because the story takes an interesting turn. I explained to Dr. Lions that Mariah (our cat) has become "cranky" recently and that I have been keeping an eye on this looking at possible bladder infection, or developing arthritis in her hind legs which would also explain her change in toiling habits, namely peeing on the floor around the box and most recently on the bathroom rug.
Dr. Lions explained that this loud crying and "crankiness" could be part of what vets call "Old Age Complaining." Cats with aches and pains, confusion, cognitive changes will just complain. I commented, "Funny. Just what I need is more cognitive changes. About eight years ago, my life partner was diagnosed with young onset Alzheimer's Disease."
She explained that there actually has been some research done on aging cats that shows that there is an Alzheimer's like pathology that can develop.
Bring on the Aricept and Namenda ... or maybe just the antibiotics.
When I first started visiting Green Bay Animal Hospital, the two veterinarians who staffed the clinic were Dr. Bear and Dr. Fox. Several years later Dr. Fox went on to open his own clinic and I followed with Hoover and Mariah, our cats. Today I took Mariah in for some bladder infection problems. Dr. Fox was not in and to my surprise, the doctor on duty was Dr. Lions. I love telling people that a bear, a fox, and now a lion take care of our pets.
I am reposting it here because the story takes an interesting turn. I explained to Dr. Lions that Mariah (our cat) has become "cranky" recently and that I have been keeping an eye on this looking at possible bladder infection, or developing arthritis in her hind legs which would also explain her change in toiling habits, namely peeing on the floor around the box and most recently on the bathroom rug.
Dr. Lions explained that this loud crying and "crankiness" could be part of what vets call "Old Age Complaining." Cats with aches and pains, confusion, cognitive changes will just complain. I commented, "Funny. Just what I need is more cognitive changes. About eight years ago, my life partner was diagnosed with young onset Alzheimer's Disease."
She explained that there actually has been some research done on aging cats that shows that there is an Alzheimer's like pathology that can develop.
Bring on the Aricept and Namenda ... or maybe just the antibiotics.
Thursday, August 18, 2011
More lyrics for "Michael's Down Play LIst."
IF YOU GO AWAY
(Ne Me Quitte Pas) (Jacques Brel / Rod McKuen)
Especially as sung by Shirley Horn
If you go away on this summer day Then you might as well take the sun away All the birds that flew in the summer sky When our love was new and our hearts were high When the day was young, and the night was long And the moon stood still for the nightbird's song If you go away, if you go away, if you go away
But if you stay, I'll make you a day Like no day has been or will be again We'll sail the sun, we'll ride on the rain We'll talk to the trees and worship the wind Then if you go, I'll understand Leave me just enough love to fill up my hand If you go away, if you go away, if you go away
If you go away, as I know you will You must tell the world to stop turning 'til You return again, if you ever do For what good is love without loving you? Can I tell you now, as you turn to go I'll be dying slowly 'til the next hello? If you go away, if you go away, if you go away
But if you stay, I'll make you a night Like no night has been or will be again I'll sail on your smile, I'll ride on your touch I'll talk to your eyes that I love so much But if you go, go! I won't cry Though the good is gone from the word goodbye If you go away, if you go away, if you go away
If you go away, as I know you must There'll be nothing left in the world to trust Just an empty room, full of empty space Like the empty look I see on your face I'd have been the shadow of your shadow If I thought it might have kept me by your side If you go away, if you go away, if you go away
IF YOU GO AWAY
(Ne Me Quitte Pas) (Jacques Brel / Rod McKuen)
Especially as sung by Shirley Horn
If you go away on this summer day Then you might as well take the sun away All the birds that flew in the summer sky When our love was new and our hearts were high When the day was young, and the night was long And the moon stood still for the nightbird's song If you go away, if you go away, if you go away
But if you stay, I'll make you a day Like no day has been or will be again We'll sail the sun, we'll ride on the rain We'll talk to the trees and worship the wind Then if you go, I'll understand Leave me just enough love to fill up my hand If you go away, if you go away, if you go away
If you go away, as I know you will You must tell the world to stop turning 'til You return again, if you ever do For what good is love without loving you? Can I tell you now, as you turn to go I'll be dying slowly 'til the next hello? If you go away, if you go away, if you go away
But if you stay, I'll make you a night Like no night has been or will be again I'll sail on your smile, I'll ride on your touch I'll talk to your eyes that I love so much But if you go, go! I won't cry Though the good is gone from the word goodbye If you go away, if you go away, if you go away
If you go away, as I know you must There'll be nothing left in the world to trust Just an empty room, full of empty space Like the empty look I see on your face I'd have been the shadow of your shadow If I thought it might have kept me by your side If you go away, if you go away, if you go away
Wednesday, August 17, 2011
Improv for Alzheimer's
From NPR Morning Edition
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."
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