Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.
And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.
In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.
On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.
After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.
No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.
When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.
My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.
I grief and am also grateful for Barbara's and Marie's deaths.
Showing posts with label Expectations. Show all posts
Showing posts with label Expectations. Show all posts
Sunday, March 2, 2014
Wednesday, January 22, 2014
Good Advice, Late in Coming & Easier Said ...
I subscribe to a number of memory care facilities e-mail blasts and on line support. (I am in the process of un-subscribing to many of them as they have become irrelevant.)
The following came in today and it did make me feel a little guilty. If I had read this prior to Gregory's psychotic episode would I have acted differently? Was I too demanding of Gregory with expectations for self-help set too high for his abilities?
But guilt aside, I don't think so if only because most often he would figure out what to do without my help allowing him to maintain a sense of independence. Also, the incidence of his getting overwhelmed and upset and out of touch had increased exponentially over his last few weeks at home. He needed constant care and attention and often refused that care and attention.
However, it does make one think... It also makes it seem easier than it sounds.
Does your loved one ever seem to "lose it" over nothing? Overreactions to otherwise ordinary requests or events -- crying, cursing, pacing, or lashing out physically or verbally -- are called "catastrophic reactions." They can befall anyone with dementia and can be upsetting, even frightening, to a caregiver. One common cause: too many competing stimuli. If a room is noisy and the person is feeling rushed or is dealing with other strong emotions (embarrassment, frustration), and then tension spills into an argument, the result can be assorted behaviors that overwhelm the person and his or her ability to react more typically. Hard as it may be for you to stay calm, it really helps. If you can guess the trigger, remove it: Change the subject, change the activity, turn off the radio. If the person is particularly worked up and it's safe to leave him or her alone for a bit, do so. When things seem slightly calmer, forget it happened and then distract your loved one with a favorite activity or snack.
And then to end of a frightening note, I was talking to the husband of the daughter of my step Aunt Elaine. He is a rabbi and shared that in his congregation, a woman with Alzheimer's stabbed her husband to death with a kitchen knife, thinking he was an intruder in their home. Not to lighten the horror of it, how do you follow that one with a favorite activity or snack.
Monday, July 8, 2013
Today
Sometimes Horoscopes make a lot of sense!
July 08, 2013
Aries (3/21-4/19)
- You can't do it all today, which is a fact that will become dramatically apparent almost as soon as you get started this morning. But instead of feeling frustrated, start paring off a few tasks -- and adjust your expectations. Despite the current rumors, you are not a superhero! It's much better to do less and succeed often than it is to always aim for the stars and continually fall short of them. Climbing a smaller mountain is still climbing a mountain.
Thursday, June 27, 2013
True Emotions - Untrue Triggers
The quotes below are taken from The Five Levels of Attachment by Don Miguel Ruiz Jr. You may be familiar with The Four Agreements by his father Don Miguel Ruiz. Both books have been important helps to me with improving the quality of understanding my beliefs and behaviors as well as in dealing with Gregory's Alzheimer's.
While I have always recognized emotions as a part of being human, I felt that emotions out of control were a bad thing. I never thought of them as an anchor to how I am feeling about myself or my environment.
I wrote about this recently when I realized that when dealing with a difficult interaction between Gregory and myself, my emotions would seemingly inappropriately explode. It turns out the emotions were real and I needed to honor and give them notice. The difficulty was that old expectations in my relationship with Gregory were triggering the emotions and the triggers were no longer true.
For example now and then I would interpret Gregory's behavior as showing his not caring or not trying hard enough to behave in a way that I was used to. Turns out the emotions caused by my interpretation was real but the trigger was no longer true. He does the best he can but the Alzheimer's is what at times scrambles his behavior, not his lack of caring.
I realized that I was still allowing the old triggers to cause my emotions when if effect, the old triggers were no longer true. I needed to look at those triggers and delete them while adding new triggers and new emotions, like feeling nurturing in place of feeling anger when Gregory did something that looked like a lack of caring when in reality it was that he could no longer focus on the issue at hand.
A short while later, I came across this discussion in Ruiz Jr's book which reinforced what I had already begun to understand:
"It is important to keep in mind that our emotions are real and should not be ignored as if they don't exist or stuffed away as if they aren't valid. Emotions create the most authentic anchor we have to ourselves.
"The whole spectrum of emotions--fear love, jealousy, insecurity, anger, joy--is very real. But here's the thins: What triggers those emotions may not be real.
"Our emotions--regardless of the triggers--are expressions of ourselves. These are the important questions to ask: Are we aware of the triggers? Do we know if the trigger is based on reality or if it is based on faulty information? Is the trigger based on an attachment to a certain belief or expectation?
"Uncomfortable emotions are like car alarms: they let us know there is a problem to attend to, a wound for us to wrk on, thus allowing us to see our own truth. Whenever an emotions gets triggered, it is the opportune moment to ask questions such as: What is this about? What agreement is at the heart of this? What attachment does this threaten? Do I really believe this? Is it important? Answering these questions gives us the opportunity to examine our beliefs and choose whether or not to continue to believe.
"We honor our emotions by realizing that they are an expression of how we feel and what we are going through. We look at what has triggered our emotions, while still allowing ourselves to simply feel. We further honor our emotions by having the awareness that they may have been triggered by something not based on truth. Thus we use our emotions as a tool for transformation, because they completely expose whatever agreement has been hiding beneath the surface.
While I have always recognized emotions as a part of being human, I felt that emotions out of control were a bad thing. I never thought of them as an anchor to how I am feeling about myself or my environment.
I wrote about this recently when I realized that when dealing with a difficult interaction between Gregory and myself, my emotions would seemingly inappropriately explode. It turns out the emotions were real and I needed to honor and give them notice. The difficulty was that old expectations in my relationship with Gregory were triggering the emotions and the triggers were no longer true.
For example now and then I would interpret Gregory's behavior as showing his not caring or not trying hard enough to behave in a way that I was used to. Turns out the emotions caused by my interpretation was real but the trigger was no longer true. He does the best he can but the Alzheimer's is what at times scrambles his behavior, not his lack of caring.
I realized that I was still allowing the old triggers to cause my emotions when if effect, the old triggers were no longer true. I needed to look at those triggers and delete them while adding new triggers and new emotions, like feeling nurturing in place of feeling anger when Gregory did something that looked like a lack of caring when in reality it was that he could no longer focus on the issue at hand.
A short while later, I came across this discussion in Ruiz Jr's book which reinforced what I had already begun to understand:
"It is important to keep in mind that our emotions are real and should not be ignored as if they don't exist or stuffed away as if they aren't valid. Emotions create the most authentic anchor we have to ourselves.
"The whole spectrum of emotions--fear love, jealousy, insecurity, anger, joy--is very real. But here's the thins: What triggers those emotions may not be real.
"Our emotions--regardless of the triggers--are expressions of ourselves. These are the important questions to ask: Are we aware of the triggers? Do we know if the trigger is based on reality or if it is based on faulty information? Is the trigger based on an attachment to a certain belief or expectation?
"Uncomfortable emotions are like car alarms: they let us know there is a problem to attend to, a wound for us to wrk on, thus allowing us to see our own truth. Whenever an emotions gets triggered, it is the opportune moment to ask questions such as: What is this about? What agreement is at the heart of this? What attachment does this threaten? Do I really believe this? Is it important? Answering these questions gives us the opportunity to examine our beliefs and choose whether or not to continue to believe.
"We honor our emotions by realizing that they are an expression of how we feel and what we are going through. We look at what has triggered our emotions, while still allowing ourselves to simply feel. We further honor our emotions by having the awareness that they may have been triggered by something not based on truth. Thus we use our emotions as a tool for transformation, because they completely expose whatever agreement has been hiding beneath the surface.
Monday, September 17, 2012
Never
Never have him do something that requires a specific outcome.
Never say something that requires a response.
Never ask him a question that requires an answer.
Never think you understand what he is saying.
Never ask him to clarify what he just said.
Never ask him to clarify what he just did.
Never trust him to follow through.
Never expect him to know how to do something that he did yesterday.
Never help him because you will only confuse him more.
Never assist him in gathering his thoughts because even then they will be disorganized.
Never have him get dressed twice in one day as he will not know how to do that.
Never guess about what he is trying to say as you will never find out for sure.
Never rush him as he will screech to a halt.
Never get frustrated with him as his behavior will become more confused.
Never depend on him as you will probably do it yourself anyway.
Never count on him in emergencies as you will probably have to take care of it yourself.
Never count on him in extreme emergencies as you will probably die anyway.
Never change the order or place of things as he will become confused.
Never expect him to find things even if they are in the same place they always are.
Never suppose he can see what you are pointing at.
Never think that when you touch something to show him what you are talking about that he will see it.
Never think that you can change subjects too quickly as most often he cannot release his focus.
Never ask him to bring you something as you will never get what you asked for.
Never be prepared as you will never know what to be prepared for.
Never
Never
Never
Sometimes later
Sometimes tomorrow
Sometimes never again
Maybe not this time
Maybe not the next time
Maybe never again
Or not.
Never say something that requires a response.
Never ask him a question that requires an answer.
Never think you understand what he is saying.
Never ask him to clarify what he just said.
Never ask him to clarify what he just did.
Never trust him to follow through.
Never expect him to know how to do something that he did yesterday.
Never help him because you will only confuse him more.
Never assist him in gathering his thoughts because even then they will be disorganized.
Never have him get dressed twice in one day as he will not know how to do that.
Never guess about what he is trying to say as you will never find out for sure.
Never rush him as he will screech to a halt.
Never get frustrated with him as his behavior will become more confused.
Never depend on him as you will probably do it yourself anyway.
Never count on him in emergencies as you will probably have to take care of it yourself.
Never count on him in extreme emergencies as you will probably die anyway.
Never change the order or place of things as he will become confused.
Never expect him to find things even if they are in the same place they always are.
Never suppose he can see what you are pointing at.
Never think that when you touch something to show him what you are talking about that he will see it.
Never think that you can change subjects too quickly as most often he cannot release his focus.
Never ask him to bring you something as you will never get what you asked for.
Never be prepared as you will never know what to be prepared for.
Never
Never
Never
Sometimes later
Sometimes tomorrow
Sometimes never again
Maybe not this time
Maybe not the next time
Maybe never again
Or not.
Tuesday, July 31, 2012
Arising to Panic
We have gotten used to arising in panic.
Late hours of the night or wee hours of the morning.
"There. Look. What is that?"
"Nothing, you are just dreaming. Nothing to worry about. Go back to sleep."
"Are you sure. Are you sure."
"Yes, everything is OK," stroking his cheek, holding his hand.
We both settle down and fall back to sleep.
In the beginning these events used to disturb me and I could not get back to sleep. Now they have become expected and for some reason that makes them easier with which to deal.
Telling Gregory that "You're only dreaming" is easier and kinder than addressing the fact that he has begun to hallucinate. I am not sure what he is seeing, and to him it is real ... but I can be calm and assure him that everything is under control. He is able to trust me and fall back asleep.
There is the possibility that he wakes and is not able to separate his dream from reality. If this is the case we may not have hallucination but something none-the-less real for him. Again, calm support and comforting does the trick.
More difficult, but still now expected and therefore tolerable, is when he knocks an imaginary something off my sleeping shoulder bringing me fully awake quickly. Sometimes picking something out of my hair is either a service or an hallucination, but either way I react calmly.
To me it is the unexpected and unknown that freaks me out. Once I can rely on something, even if it isn't pretty, I can better deal with it. Once I can begin, at least, to understand what is happening or what might be going on in his mind, I can better deal with it.
A third aspect in better dealing is to not allow myself to worry about the future. I know it will get worse. I know the "rules" and "understandings" will change, but that is tomorrow. Tonight I'll just get back to sleep, holding my honey's hand, and sending him thoughts of love.
Late hours of the night or wee hours of the morning.
"There. Look. What is that?"
"Nothing, you are just dreaming. Nothing to worry about. Go back to sleep."
"Are you sure. Are you sure."
"Yes, everything is OK," stroking his cheek, holding his hand.
We both settle down and fall back to sleep.
In the beginning these events used to disturb me and I could not get back to sleep. Now they have become expected and for some reason that makes them easier with which to deal.
Telling Gregory that "You're only dreaming" is easier and kinder than addressing the fact that he has begun to hallucinate. I am not sure what he is seeing, and to him it is real ... but I can be calm and assure him that everything is under control. He is able to trust me and fall back asleep.
There is the possibility that he wakes and is not able to separate his dream from reality. If this is the case we may not have hallucination but something none-the-less real for him. Again, calm support and comforting does the trick.
More difficult, but still now expected and therefore tolerable, is when he knocks an imaginary something off my sleeping shoulder bringing me fully awake quickly. Sometimes picking something out of my hair is either a service or an hallucination, but either way I react calmly.
To me it is the unexpected and unknown that freaks me out. Once I can rely on something, even if it isn't pretty, I can better deal with it. Once I can begin, at least, to understand what is happening or what might be going on in his mind, I can better deal with it.
A third aspect in better dealing is to not allow myself to worry about the future. I know it will get worse. I know the "rules" and "understandings" will change, but that is tomorrow. Tonight I'll just get back to sleep, holding my honey's hand, and sending him thoughts of love.
Wednesday, October 5, 2011
A New Observation
THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
Wednesday, 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.
Wednesday, June 29, 2011
Setting Expectations
I am part of an online Alzheimer's Support Group called "Circle of Care" which is sponsored by the Novartis Drug Company. This is a chain of conversation which I recently had with Deborah, one of the facilitators.
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
What I knew about Alzheimer's Drugs came from discussions with our doctors and study online. From the beginning, I knew that Aricept and Namenda would not CURE or REVERSE the dementia. I knew that it would help to slow it down so the quality of life would last for a little longer. I also knew that everyone reacts differently within the general pattern of things. Therefore, I was not so surprised when the medications gave Gregory a jump start of renewed "availability."
And I agree, Deborah, it doesn't stop but the hope is always there. Even if it is the hope to get through one day, one success, one failure at a time. Hope to be strong, supportive, able for your loved one. And storng, supportive, and able for yourself.
Thursday, April 21, 2011
Expectations Are What You Expect Them To Be
When you love someone, nothing is impossible. While I am spiritual and NOT religious, I do like the quote from 1 Corinthians 13:7 "Love bears all things, believes all things, hopes all things, endures all things."
I first suspected that Gregory was having problems long before he was aware of them. Eventually we had the doctor run a number of tests (with Gregory's permission.) When we got the verdict of Alzheimer's we were almost relieved because now we understood what he had been going through and why, as well as what we could do to get on with our life.
As Gregory lost abilities, I learned to compensate. As the rules changed, I was able to figure out what the new ones were. As it became evident that there were no rules, I learned to "roll with the punches." I knew that I had to change my behavior, because he couldn't change his.
I cannot say that I ever had expectations (advance ideas) about what caregiving would entail. I just adjusted as it was needed. I chose not to think too much about what future caregiving might bring as I would rather live for today. That does not mean I don't study up on what I might expect to happen but when it gets too depressing, I put the books down.
As we needed to accomodate we accommodated. As our roles needed to change, they changed. I am fortunate that Gregory has always been so good natured and content and calm and that he has been able to hold on to those attributes even as his abilities continued and continue to dessert him. He defers to me, he trust me, he loves me and I love him.
So my expectations are only that I will continue to grow into being the best caregiver I can be, I will make sure I take care of my own health and mental well being, and I will strive to keep Gregory safe, happy, and involved, I will make the right decisions when I need to make them.
Thursday, March 24, 2011
Predictibablity
The green plants are always there,
Sitting on the bedroom bookcase top,
With several other items of interest.
Nothing needs be done,
No decisions made,
It always remains the same.
The living room window sill,
Sports in a row - Buddha, Ganesh,
An African Protection Fetish.
Sitting on the bedroom bookcase top,
With several other items of interest.
Nothing needs be done,
No decisions made,
It always remains the same.
The living room window sill,
Sports in a row - Buddha, Ganesh,
An African Protection Fetish.
Nothing needs be done.
No decisions made.
It always remains the same.
Each night at bedtime they are tapped lovingly,
One by one in his concentrated way,
Counting on at least one predictable, familiar experience.
Thursday, December 30, 2010
The Semblance of a Tape Measure
I don't know how to measure this. Let it suffice to say, "He is getting worse." But that does not begin to measure the change. Lets just say, "He is getting worse. Has has been getting worse. He will continue to get worse."
When you live with a person who has a Dementia, you slowly acclimate as they slowly deteriorate. This makes it even harder to measure. The changes are slow, moderate, and sometimes fast. Sometimes the changes will work in reverse but it is more like they "pop up" here and there, now and then, but never consistantly.
This causes difficulty measuring the progress of the Dementia.
Language continues to fail. Most of the time he will begin to say something but after the set up he cannot continue. More and more, if he can't get it and if it isn't obvious to me, we just let it go and don't even try to figure it out.
This causes not only are difficulty measuring the progress but also difficulty predicting the progress.
Cognition continues to fail. He gets confused over simple operations like buttering his toast or deciding where to put the butter in the first place. He emptied the sink strainer then threw it away with the garbage. He was about to go for a walk and I discovered that he did not have his keys. Then I checked and while he had his cell phone holster on his belt, it was empty. His wallet was still in the drawer. Yet his coat, scarf, gloves, and hat were on and he was ready to leave.
I could not even discuss the messed up situation with him because he could not follow and said something like, "I was going to do that next." However, he didn't really know that he did not have his keys on or his cell phone in.
Often now, when I ask if he has his cell phone, he does not know where to look for it. He will search one pocket then the other not remembering that the cell phone should be in the holster on his belt. The look on his face tells me that without seeing the object, he may not even understand what the words "CELL PHONE" mean.
This causes not only difficulty measuring progress but also difficulty predicting the progress and finally difficulty even understanding what form the progress is taking.
Semblance is the word that comes to mind. There is a semblance of order in our life, a semblance of routine, a semblance of a semblance of a life.
semblance |ˈsembləns|. noun. the outward appearance or apparent form of something, esp. when the reality is different : she tried to force her thoughts back into some semblance of order.
Both Gregory and I "try to force our thoughts back into some semblance of order" all the time. Some days we do well, most days we do not.
When you live with a person who has a Dementia, you slowly acclimate as they slowly deteriorate. This makes it even harder to measure. The changes are slow, moderate, and sometimes fast. Sometimes the changes will work in reverse but it is more like they "pop up" here and there, now and then, but never consistantly.
This causes difficulty measuring the progress of the Dementia.
Language continues to fail. Most of the time he will begin to say something but after the set up he cannot continue. More and more, if he can't get it and if it isn't obvious to me, we just let it go and don't even try to figure it out.
This causes not only are difficulty measuring the progress but also difficulty predicting the progress.
Cognition continues to fail. He gets confused over simple operations like buttering his toast or deciding where to put the butter in the first place. He emptied the sink strainer then threw it away with the garbage. He was about to go for a walk and I discovered that he did not have his keys. Then I checked and while he had his cell phone holster on his belt, it was empty. His wallet was still in the drawer. Yet his coat, scarf, gloves, and hat were on and he was ready to leave.
I could not even discuss the messed up situation with him because he could not follow and said something like, "I was going to do that next." However, he didn't really know that he did not have his keys on or his cell phone in.
Often now, when I ask if he has his cell phone, he does not know where to look for it. He will search one pocket then the other not remembering that the cell phone should be in the holster on his belt. The look on his face tells me that without seeing the object, he may not even understand what the words "CELL PHONE" mean.
This causes not only difficulty measuring progress but also difficulty predicting the progress and finally difficulty even understanding what form the progress is taking.
Semblance is the word that comes to mind. There is a semblance of order in our life, a semblance of routine, a semblance of a semblance of a life.
semblance |ˈsembləns|. noun. the outward appearance or apparent form of something, esp. when the reality is different : she tried to force her thoughts back into some semblance of order.
Both Gregory and I "try to force our thoughts back into some semblance of order" all the time. Some days we do well, most days we do not.
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.
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.
Thursday, December 2, 2010
Traveling for the Holidays
Our Thanksgiving holiday went extremely well. We spent five+ days in Michigan visiting Gregory's family. It was great to spend time together on the road and to be away from home and the accompanying errands and chores.
While in Michigan, I was extra attentive to Gregory's needs, tried very hard to anticipate problem areas and/or times, helped keep him organized in the guest room where we stayed, planned ahead to make sure I brought everything he would need when I packed.
I made sure that I assured him he was doing well and that he could count on me at any time including waking me up at night if necessary. Our family is well aware of Gregory's situation with Alzheimer's and how to interact with him in a way that maintains a calm atmosphere is supportive, respectful, and easy for him to navigate.
I made sure that I assured him he was doing well and that he could count on me at any time including waking me up at night if necessary. Our family is well aware of Gregory's situation with Alzheimer's and how to interact with him in a way that maintains a calm atmosphere is supportive, respectful, and easy for him to navigate.
I took care of myself by exercising, not eating too much of the wonderful Thanksgiving food, and arranging to spend some of the time away from Gregory. It was good for him to spend time alone with his nephew and for me to get out with our niece to do lunch, Christmas shopping, and antiquing. One day Gregory and our niece went for a long walk a the nearby forest. I had that time to myself.
The holiday itself was spent his Gregory's brother and sister-in-law, nephew and his wife, niece and her daughter. Dinner was delicious, multi-coursed, and we didn't have to do any of the work. Time with his family is always enjoyable (even with family ups and downs.)
The holiday itself was spent his Gregory's brother and sister-in-law, nephew and his wife, niece and her daughter. Dinner was delicious, multi-coursed, and we didn't have to do any of the work. Time with his family is always enjoyable (even with family ups and downs.)
When back home, I was extra alert to what I call "re-entry." Very often it is not being away from home that causes Gregory trouble but rather arriving back home and his trying to get back into routines and home habits. I have learned to have few or no expectations for Gregory for the first few days home.
I will not ask him to do much even of those things he can do like folding laundry and setting the table. I unpack, do the laundry, and put things away. When he has problems readjusting I assure him that, "It is just the re-entry." That makes him feel better. When he wants to help I suggest, "Why not just relax for now. Go have some coffee and read your book."
I will not ask him to do much even of those things he can do like folding laundry and setting the table. I unpack, do the laundry, and put things away. When he has problems readjusting I assure him that, "It is just the re-entry." That makes him feel better. When he wants to help I suggest, "Why not just relax for now. Go have some coffee and read your book."
Most of the above knowledge has not been easily gained and not instantly. It has taken time, observations, trial and error, apologies for being impatient and at times rude. But things, for now, seem to work well when we travel to visit family both for the holidays and other times as well.
Wednesday, November 17, 2010
A Beautiful Day
For me a good day is when the expectations and interactions of the day are such that no major or few confrontations take place. Even with my lowered expectations for Gregory I get frustrated and/or angry. Angry at ALZ, but none the less the emotion that shows is anger.
He is so often "normal" that when the ALZ "flairs up" I forget and respond as I "normally" would based on the expectations of pre-ALZ days. Or I misinterpret the situation and react inappropriately and with frustration. Then I feel bad at making him feel bad. One of my major goals is to allow him to feel whole as much as possible and during these difficult episodes I am not at my best.
On the days he is successful in most of what he attempts, most of what I request him to do, and most of our interactions, I feel like it has been a "good day." On a "bad day" I try not to beat myself up too much but rather work harder at being patient and supportive and aware of his needs and his "state of the moment."
He is so often "normal" that when the ALZ "flairs up" I forget and respond as I "normally" would based on the expectations of pre-ALZ days. Or I misinterpret the situation and react inappropriately and with frustration. Then I feel bad at making him feel bad. One of my major goals is to allow him to feel whole as much as possible and during these difficult episodes I am not at my best.
On the days he is successful in most of what he attempts, most of what I request him to do, and most of our interactions, I feel like it has been a "good day." On a "bad day" I try not to beat myself up too much but rather work harder at being patient and supportive and aware of his needs and his "state of the moment."
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