FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Showing posts with label Dignity. Show all posts
Showing posts with label Dignity. Show all posts

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.








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,”



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

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9500 Gilman Drive – 0948 La Jolla, CA 92093  





Wednesday, August 17, 2011

Improv for Alzheimer's


From NPR Morning Edition


Improv For Alzheimer's: 'A Sense Of Accomplishment'

August 15, 2011
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."

Wednesday, May 25, 2011

Its the little things...

It is the little things that do matter in helping to keep Gregory active, involved, respected, and loved. Letting him help as often as possible, even in little ways, helps give him purpose and the sense of sharing our daily life. It helps him to depend on me more when he knows I continue to depend on him. Always acknowledging my appreciation and saying "Thank You" even though I am thanking him about the same things each day and sometimes several times a day, gives feelings of love. Keeping an eye on what he still can do ... at least do today, and letting him do it, allows him to keep his self respect. Not correcting but rather "walking behind and fixing" is also helpful. Telling him "I love you" many times a day, touching his face or back, planting a kiss, all tell him that I am here and will be here to support him.

Tuesday, March 29, 2011

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

Friday, February 11, 2011

Valentine's Day

Ouch. This one was hard. You know how some people say, "If you have to be reminded it doesn't count?" Well I have decided that it does count. For Valentine's Day I bought Gregory a beautiful satin heart filled with Godiva chocolates. I didn't want him to feel badly that I remembered him for Valentine's Day and that he didn't remember me. Also I wanted to be remembered so I began to remind him a week early. "You have seven days to get me something for Valentine's Day." 6 ... 5 ... 4 ...  3... etc.

Today, he went out for his usual afternoon walk and without my reminding he stopped at the Barnes and Nobel and bought me a Valentine's Day Card (at least I think that is what he got, I will not know for sure until Monday.) I suggested he sign it and we could put it on the counter until Monday. He did not know what I meant. "It has been such a long time since I got anyone a card!" Then he got overwhelmed and began crying at not knowing what to do. While he sat on the bench, I held his head in my arms and we rocked together. When he calmed down we set about accomplishing this difficult adventure together.

He kept trying to take the card out of its bag but I explained, "I don't want to see it until Valentine's Day." I explained that one puts the name of the person on the envelope and writes a message inside the card. Based on the look on his face, I was not sure if he knew any of the words or concepts. I waited patiently while he did some heavy thinking, "I think I just want what's written inside." Maybe he did understand what I had said.

That was good enough for me so I sat him down at my computer desk, gave him a red pen, reached into the bag without looking (saying "I'm not looking.")  and gave him the envelope on which to write my name.

"This is going to be hard," he said so I took a post-it note and wrote my name on it. With some coaching he was 80% able to copy my name from the post-it onto the envelope. Next I opened the card (still not looking but with a little peeking so I could see where he should sign his name and pointed. This time I wrote his name on a post-it so he could copy. It was more difficult for him copying his own name.

Finally we were finished, he sealed the envelope (with my prompting) and we put it on the counter with my gift for him to wait until Monday. We will go out for dinner and then after watching a movie at home I am making Fudge Brownie Volcanoes (the kind you warm up in the microwave so the center fudge melts and runs on cutting) with Ice Cream. It will be good.

Wednesday, January 26, 2011

The Hats I Wear: Part 1

When we visit the doctor, I wear all of the hats that are needed. Gregory and I have always been open with each other (Gregory now a days as much as his language allows him to be.) While I have told a few white lies or selectively forgotten to inform him of something, we always discuss everything about our situation and I include him in all decisions if only to tell him "I have decided..." 

I keep anecdotal notes and print them out when we go to the doctor. I do most of the talking and let Gregory join in when he attempts to do so. Our doctors treat him with respect and always begin by addressing their questions directly to Gregory knowing I will "chime in" as necessary. When I am having to talk to the doctor about difficult issues (dealing with Gregory Alzheimer's and its progression) I will often appologize to Gregory for talking about him as if he wasn't there. At the point when I need to talk about issues that I do not want Gregory to know about, to help preserve his happy bliss, I will call the doctor ahead of time and discuss the issues privately. 

Gregory continues to accept my support graciously and to trust himself and his care to me. In fact he trusts me unconditionally (may it last forever) with his life.

Saturday, December 18, 2010

Just a Flash

Last night I had just a flash of how sad and lonely I really am. I was able to swallow it as I fell asleep knowing today I would feel better and I do. We had been watching "The Secret Life of Bees" (DVD) which is quite a powerful movie dealing with childhood, parents, trauma, racial tensions in the 60's, life, love, and death. Apparently the movie affected Gregory quite a bit but it didn't show until he had a "meltdown" when asked, "Why didn't you take my water?" It is his job to fill the water glasses we use in the TV room and put them by our side tables for bedtime. He had refilled his but left mine behind. It was just a question. He got all upset, flustered, couldn't express himself and for some reason blamed me and waved me away.


I took it personally when it was really the big "A" speaking. None-the-less I took it personally. I finished closing up the house and sat, for a while, in the dark living room. I felt myself shutdown as I realized that in spite of our wonderful family, friends, and acquaintances; I feel so alone. Alone as in the end, when you die, you must do it alone. The best I could do was feel numb.


More and more, my conversations, mundane or intellectual, are with myself. Most of the time I keep my observational comments to myself because Gregory will not understand, will have missed the item my observation was based on, will reply in relation to what he was thinking not what I was observing, or I will have to repeat because he wasn't focused and ready to listen.  Again ... and again. 


I continue to take the risk of having conversations and asking him questions. I still ask him for help, to do something for me. Very often it backfires and I have to explain again, remind when he forgets to follow through, correct his misunderstanding, give step by step directions, or take over myself. 


Very often after my reminding or correcting he will reply, "I knew that." When I try step by step directions, he is aware enough that he waits for the rest of the information but when given, gets confused and cannot follow more than one step at a time. When I have to take over, no matter how nicely I do it, it is awkward for both of us.


The alternative is to ask, say, and expect nothing and I cannot believe that is good for Gregory's self confidence. But I have to remind myself that if I believe this is good for him and continue to hold expectations, no matter how minimal, I must also be ready for and risk his meltdown and/or my shutdown. 


I think that I have created a fantasy world in which I feel like I am in a relationship that resembles normal. Every now and then the vail parts and I get a glimpse of reality. It looks much like Hell. I hate to be so hard but I think I might be right about this, dear.

Monday, December 13, 2010

It Matters

Today Gregory asked if he could have oatmeal for breakfast. Happy to oblige. Based on previous experience, I suggested he get everything else ready on his breakfast tray before I make the oatmeal. A few minutes later, I am writing at my computer and he is standing in the door. I stop and ask, "What do you need?"

"I'm not sure what to do."

"What if you prepare your protein, fruit, and tea and then I'll do the oatmeal."

"Protein?"

At that point I realized that I will have to make his breakfast for him today. Just the change in the type of cereal he is going to have caused him to become totally disoriented and forget how to do what he usually does to make his own breakfast every morning.

Awkward for me to have to take over, awkward for him being so confused. I wasn't angry, didn't raise my voice or sigh under my breath. I am getting much better. I just made his breakfast. But the mere fact that I had to do and he couldn't do was difficult for both of us.

Do any of these little, passing interactions, experiences really matter? In the big picture of life, does one confused bowl of oatmeal really matter? As long as he can't but I can, does it really matter?

I am reminded of one of the pieces of a live performance we saw by Lily Tomlin, "The Search for Intelligent Life." Her character is a goth, displaced, disenfranchised young girl named Agnus Angst. The piece ends with the girl, while holding her hand over a candle flame, lamenting "Life is nothing. Pain is nothing. It doesn't matter. (Long pause) It matters, it matters, it matters." CURTAIN

Saturday, December 11, 2010

Negotiating Dignity

Negotiating Dignity. By Jan Yourist. Click this link to go to a thoughtful, helpful yet painful BLOG on helping one's parents age with dignity.

Gregory is not yet to the point in his Alzheimer's progress that he needs help with his physical needs but I have often thought about the time when he will. As Jan poses at the end of her BLOG, it is even more difficult to have to think of the eventuality of not only needing support with my own physical needs but how that will impact his physical needs being met. Perhaps I should get more involved than I have been in investigating what is out there for when the time comes.

In our case and at this point in time, I am dealing mainly with helping Gregory process, problem solve, make decisions, use language, maintain his heath. In other words, to negotiate his day to day life with dignity. I try to ensure that his life is safe, happy, and dignified emotionally.

This is not always easy especially when I sometimes have to play guessing games to figure out what his needs are. Sometimes he is not sure what his own needs are let alone be able to express them. Other times I am not at my best in dealing with Gregory when my own emotional state is out of balance.

At least both Gregory and I have so far lived our lives with dignity when it comes to family, friends, neighbors, colleagues, business associates, fellow (wo)mankind. Hopefully that should make it easier to live with dignity for ourselves as needs increase.