Sweet Miss Dixie
This may be the end of Sweet Miss Dixie (aka my mother). Behavior problems at day care. Miss Dixie kicked someone in a wheel chair. Uncharacteristic, the staff nurse reported. Was there something going on at home? Now, in my delicate state as a dementia/care giver, that struck me as a little intrusive. Let me alter that: It struck me as downright nosey! Well intentioned, yes, I'll give them that, but not quite the right wording for it to sit well with me.
Nurse's recommendation: check with your neurologist about increased agitation. (Another drug, I suppose.) Also, the nurse mentions that she noticed continued elevation of her blood pressure. (Another drug seems to be the unstated recommendation here.) What the heck, she's 88 years old and we don't have prescription insurance.
Instead, how about a questions that asks: Have you noticed new behavioral changes at home? To which I could have answered the same thing that I answered. Yes, I have notice small changes. Urinary incontinence. (Oh, you didn't know that? Yes, I know. We haven't had a conversation about changes we both see so that's why that particular line of questioning might have made sense... not to mention, saved my blood pressure a little bit. Snarl, snarl.)
Also, she is more difficult to re-direct. On the scale that the neurologist asks me every six months, I would raise it about half a point. Yes, her stubbornness with what she wants to happen is definitely there. And, it was apparently also there when the poor soul in a wheel chair happened to be in a place that Miss Dixie wanted to be, instead.
I would also say that she responds negatively to agitation around her. I keep reminding myself that my tone of voice when dealing with her is important. I think it's becoming increasingly important as a matter of fact. A scolding tone, which I find myself using more frequently because of my frustration at saying the same thing over and over, is counter productive. It brings out out her ornery side.
I had had almost two months of relatively smooth sailing, so I guess it was bound to end. More prescriptions mean more money. No, that Medicare prescription benefit is not going to be that helpful. Her monthly income is pushed to the limit now. If it's really important, yes, I want to do it. But, if it is a choice between a minor impact on the quality of her life and her longevity versus greater financial pressure on me... That may be a close call.
So, what happened? As I thought more about it, I decided that some missed Namenda-- her evening dose -- may have contributed to the behavior problem. Yeh, I messed up. Since I am the only one to pay the bills, give the meds, give her a bath, wash her hair, cut her hair, wash her bedding, wash her clothes. It's me and me alone. Times like this I feel a little sorry for myself. Because I have my own health care to pay for, not to mention the mortgage that keeps a roof over mother's hed. Now, of course, I have more appointments for mother: in addition to the dentist and eye doctor over the next couple of months, I now have an added neurology appointment and an appointment with her primary care physician to follow up on the high blood pressure.
In between, I need to somehow figure out how to earn a living... Whine, whine.
Then again, I have been thinking: "The disease is progressing. Period." Doesn't that mean there will be changes in behavior? It will progress; everything says it will and everyone's experience indicates it will. What more can be done to stave off the impact of the progression? Maybe some mood levelers. Several in my support group have their patients on various solutions.
Sometimes the progression of the disease requires anti-psychotic medication. I remember reading a recent report in the newspaper that their impact on demenia/Alzheimer's patients seemed to increase the risk of complication leading to death. So, not much good news there.
And, I really need to keep mother in this day care setting as long as I can. Her daily rate is based on her income. Mother's rate is about one-fifth of the cost of the program. We are very fortunate to have a private day care program that will take patients who are middle and late stage dementia, but that program is out of our county and we will have to pay the full rate plus transportation. But the wonderful thing is that it's available. As I understand it there many programs for early stage dementia throughout the country, but very, very few for mid and late stage. So, we are lucky to have a program like this no matter what the cost. But, it ain't easy, folks! It's not awful or dreadful, but it isn't easy.
Did I report as feedback my feelings about the way I was approached? No, of course, not. I have too much at stake keeping that relationship viable. Here was my cowardly follow-up report to the center:
"FYI, I have scheduled an appointment for my mother with her neurologist. Unhappily, the earliest date on which we could schedule an appointment is October 24.
"As I have thought more about the incident, I am wondering if the missed Namenda might be a clue to her "agitation," despite the seemingly positive impact of reducing her nighttime urinary incontinence. Actually, her nighttime incontinence is still improving and she is definitely taking her evening Namenda. As you well know, normal with dementia is a moving target, which as we say in my support group is what makes it so difficult. Constant readjustment.
"Thanks again for the report on Friday. I truly hope the aggression stops and will do everything I can to help that outcome along."
Barbara
Oh, what the heck, it's full moon!
This may be the end of Sweet Miss Dixie (aka my mother). Behavior problems at day care. Miss Dixie kicked someone in a wheel chair. Uncharacteristic, the staff nurse reported. Was there something going on at home? Now, in my delicate state as a dementia/care giver, that struck me as a little intrusive. Let me alter that: It struck me as downright nosey! Well intentioned, yes, I'll give them that, but not quite the right wording for it to sit well with me.
Nurse's recommendation: check with your neurologist about increased agitation. (Another drug, I suppose.) Also, the nurse mentions that she noticed continued elevation of her blood pressure. (Another drug seems to be the unstated recommendation here.) What the heck, she's 88 years old and we don't have prescription insurance.
Instead, how about a questions that asks: Have you noticed new behavioral changes at home? To which I could have answered the same thing that I answered. Yes, I have notice small changes. Urinary incontinence. (Oh, you didn't know that? Yes, I know. We haven't had a conversation about changes we both see so that's why that particular line of questioning might have made sense... not to mention, saved my blood pressure a little bit. Snarl, snarl.)
Also, she is more difficult to re-direct. On the scale that the neurologist asks me every six months, I would raise it about half a point. Yes, her stubbornness with what she wants to happen is definitely there. And, it was apparently also there when the poor soul in a wheel chair happened to be in a place that Miss Dixie wanted to be, instead.
I would also say that she responds negatively to agitation around her. I keep reminding myself that my tone of voice when dealing with her is important. I think it's becoming increasingly important as a matter of fact. A scolding tone, which I find myself using more frequently because of my frustration at saying the same thing over and over, is counter productive. It brings out out her ornery side.
I had had almost two months of relatively smooth sailing, so I guess it was bound to end. More prescriptions mean more money. No, that Medicare prescription benefit is not going to be that helpful. Her monthly income is pushed to the limit now. If it's really important, yes, I want to do it. But, if it is a choice between a minor impact on the quality of her life and her longevity versus greater financial pressure on me... That may be a close call.
So, what happened? As I thought more about it, I decided that some missed Namenda-- her evening dose -- may have contributed to the behavior problem. Yeh, I messed up. Since I am the only one to pay the bills, give the meds, give her a bath, wash her hair, cut her hair, wash her bedding, wash her clothes. It's me and me alone. Times like this I feel a little sorry for myself. Because I have my own health care to pay for, not to mention the mortgage that keeps a roof over mother's hed. Now, of course, I have more appointments for mother: in addition to the dentist and eye doctor over the next couple of months, I now have an added neurology appointment and an appointment with her primary care physician to follow up on the high blood pressure.
In between, I need to somehow figure out how to earn a living... Whine, whine.
Then again, I have been thinking: "The disease is progressing. Period." Doesn't that mean there will be changes in behavior? It will progress; everything says it will and everyone's experience indicates it will. What more can be done to stave off the impact of the progression? Maybe some mood levelers. Several in my support group have their patients on various solutions.
Sometimes the progression of the disease requires anti-psychotic medication. I remember reading a recent report in the newspaper that their impact on demenia/Alzheimer's patients seemed to increase the risk of complication leading to death. So, not much good news there.
And, I really need to keep mother in this day care setting as long as I can. Her daily rate is based on her income. Mother's rate is about one-fifth of the cost of the program. We are very fortunate to have a private day care program that will take patients who are middle and late stage dementia, but that program is out of our county and we will have to pay the full rate plus transportation. But the wonderful thing is that it's available. As I understand it there many programs for early stage dementia throughout the country, but very, very few for mid and late stage. So, we are lucky to have a program like this no matter what the cost. But, it ain't easy, folks! It's not awful or dreadful, but it isn't easy.
Did I report as feedback my feelings about the way I was approached? No, of course, not. I have too much at stake keeping that relationship viable. Here was my cowardly follow-up report to the center:
"FYI, I have scheduled an appointment for my mother with her neurologist. Unhappily, the earliest date on which we could schedule an appointment is October 24.
"As I have thought more about the incident, I am wondering if the missed Namenda might be a clue to her "agitation," despite the seemingly positive impact of reducing her nighttime urinary incontinence. Actually, her nighttime incontinence is still improving and she is definitely taking her evening Namenda. As you well know, normal with dementia is a moving target, which as we say in my support group is what makes it so difficult. Constant readjustment.
"Thanks again for the report on Friday. I truly hope the aggression stops and will do everything I can to help that outcome along."
Barbara
Oh, what the heck, it's full moon!
posted by BK Kincaid at 7:55 AM
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