The times...they are a-changin'
So things are going "south" quickly around here. For the past 3 months, Mom has become increasingly agitated, frustrated, afraid. This happens particularly after 3:30 pm daily. Typically called sundowning, it has many facets, including the idea that the person knows at that point that he or she no longer knows what he or she knows.
At first when this began, we went through the ritual of explaining what has happened over the past 15 years, based on questions Mom asked. We didn't volunteer any information that she didn't ask about. Gradually, the questions stopped, and we are at the point now where Mom just wants to "go home". She gets anxious when told she is home, she gets frustrated when she goes anywhere, home or not.
Mom doesn't know where home is these days...her home in Lordship doesn't release any information to her when she is driven by...when she is at our home, she still wants to go home. When Mom is at her current home, she can't stay there. She feels she must leave, no matter how late it is.
It worked, for a while, to tell her she was in a hotel, and it was too late to leave. It worked to show her the dressers and bed, and her pictures on the walls. It worked to open the closet and let her see her clothing there. It worked till it didn't work anymore.
Mom doesn't really want to eat food anymore either. Her appetite is iffy at best. Occasionally, usually in the mornings, she will eat a decent meal. Cereal with a banana works, or french toast at the diner, with coffee. Lunch? Like a bird. Dinner? Fat chance, people!
This is very difficult to deal with, given that she is diabetic. Again, this became a problem a few months ago. Given that her medications were still in play to keep her sugar low, her lack of food intake has wrecked havoc on her sugar counts. Remember that...
Dad, as you can imagine, just doesn't have the wherewithal to deal with any of this anymore. He continues to pine for days of old, where Mom was bright and happy and shining with hope for fun, everyday. He refuses to accept that she can no longer help him make decisions, or sit with him quietly, or even just go to sleep till morning. He fights this every moment he can. It just makes his life so much worse.
The rest of us have learned to accommodate, distract, cajole, tease her into becoming a hint of herself again. We work it, we get her to laugh, we laugh with her, we laugh at her. After all, laughing takes a whole lot less energy than crying does. Don't get me wrong, we do plenty of that too, just not with her ever.
When people she knows she should know are upset around her, she reacts in a few fairly predictable ways. She will lash out, angrily, with her words or occasionally her hands. She will get her shoes on to try and leave no matter what clothing she has on (of course, this is usually after it gets dark). She may, once in a while, be sympathetic, but that is a rare reaction these days.
This week, on Monday, I got a phone call in the morning. You know, that call that comes and you know as you hear the first ring that when you pick it up, life will change.
Dad, quite upset, said Mom was very unsteady, babbling and not at all anything like any of her selves. She had gotten increasingly unsteady over the past few weeks, and we were concerned enough to push Dad to get her blood work done to check for an infection more serious than a UTI. I said bring her to the Emergency Room right then. Their family doctor said to bring her to the Emergency Room. So he actually did.
When I got there, I asked if her sugar had been checked (a few years ago, something similar happened at our house with Mom). After about an hour and a half (during which time a CT scan was done, as was a chest X-Ray), the wonderful nurse came and took Mom's vials of blood (the heart attack blood gas check). I again asked about sugar...finally a great tech came and checked her sugar with the stick...49...uh huh!
Wow, did they move fast! I was ready - had the orange juice opened, straw in, she drank it down well before the staff made it back with peanut butter, jelly and saltines. We took are of that little blip (which was probably the reason for her morning symptoms).
After all the test results came in, and the second set of blood work confirmed no heart attack and no infection, things drastically slowed down. Geriatrics got involved, and Mom was admitted for medication and behavioral review to determine a best care plan. By 9:30 that night (after being admitted to the ER at 8 a.m.), Mom was in her room in the Geriatric Psych suite (I'm being kind).
So that's what going "south" means, when you are old, and have dementia. We're all still in the middle of "One Flew Over the Cuckoo's Nest" land right now, as the geriatric team sends its folks in to observe her and see what works. Medications are also being reviewed, particularly those that have changed in the past few months.
These medications are the ones that you give people when you want them to be quiet, to stop talking so much, to just sit and be calm. Dad wanted these, and asked over and over for them for her. He wanted her to sleep through the night. He thought these medications would help her to be less upset, less worried.
Instead, what these drugs did was to exacerbate her anxiety, frustration, decrease her need for sleep, and mess with her appetite. Because dementia masks everything, the only way to see what works is to watch her in a controlled environment. This sugar thing, it seems, was the only way to get all the medical people in one place, during a period of time to actually watch MOM...to find out what may work, and to control what's going on with medications a bit better.
These doctors outside that we've been dealing with? They don't talk to each other, they don't share information that we've asked them to share with each other. There is no consultation going on. One doctor says he only deals with the dementia. The other says he deals with her physical body. Another says he can't really deal with her brain because she has dementia, but puts her on ANOTHER med anyway. Not one of these 3 doctors communicated with each other over the past 4 months, even though we were insistent and brought information back and forth. Uh-huh.
So, now? Now, we wait. We wait for the reports to come from the team. We wait for the changing times that we will all need to adjust to. We wait.
At first when this began, we went through the ritual of explaining what has happened over the past 15 years, based on questions Mom asked. We didn't volunteer any information that she didn't ask about. Gradually, the questions stopped, and we are at the point now where Mom just wants to "go home". She gets anxious when told she is home, she gets frustrated when she goes anywhere, home or not.
Mom doesn't know where home is these days...her home in Lordship doesn't release any information to her when she is driven by...when she is at our home, she still wants to go home. When Mom is at her current home, she can't stay there. She feels she must leave, no matter how late it is.
It worked, for a while, to tell her she was in a hotel, and it was too late to leave. It worked to show her the dressers and bed, and her pictures on the walls. It worked to open the closet and let her see her clothing there. It worked till it didn't work anymore.
Mom doesn't really want to eat food anymore either. Her appetite is iffy at best. Occasionally, usually in the mornings, she will eat a decent meal. Cereal with a banana works, or french toast at the diner, with coffee. Lunch? Like a bird. Dinner? Fat chance, people!
This is very difficult to deal with, given that she is diabetic. Again, this became a problem a few months ago. Given that her medications were still in play to keep her sugar low, her lack of food intake has wrecked havoc on her sugar counts. Remember that...
Dad, as you can imagine, just doesn't have the wherewithal to deal with any of this anymore. He continues to pine for days of old, where Mom was bright and happy and shining with hope for fun, everyday. He refuses to accept that she can no longer help him make decisions, or sit with him quietly, or even just go to sleep till morning. He fights this every moment he can. It just makes his life so much worse.
The rest of us have learned to accommodate, distract, cajole, tease her into becoming a hint of herself again. We work it, we get her to laugh, we laugh with her, we laugh at her. After all, laughing takes a whole lot less energy than crying does. Don't get me wrong, we do plenty of that too, just not with her ever.
When people she knows she should know are upset around her, she reacts in a few fairly predictable ways. She will lash out, angrily, with her words or occasionally her hands. She will get her shoes on to try and leave no matter what clothing she has on (of course, this is usually after it gets dark). She may, once in a while, be sympathetic, but that is a rare reaction these days.
This week, on Monday, I got a phone call in the morning. You know, that call that comes and you know as you hear the first ring that when you pick it up, life will change.
Dad, quite upset, said Mom was very unsteady, babbling and not at all anything like any of her selves. She had gotten increasingly unsteady over the past few weeks, and we were concerned enough to push Dad to get her blood work done to check for an infection more serious than a UTI. I said bring her to the Emergency Room right then. Their family doctor said to bring her to the Emergency Room. So he actually did.
When I got there, I asked if her sugar had been checked (a few years ago, something similar happened at our house with Mom). After about an hour and a half (during which time a CT scan was done, as was a chest X-Ray), the wonderful nurse came and took Mom's vials of blood (the heart attack blood gas check). I again asked about sugar...finally a great tech came and checked her sugar with the stick...49...uh huh!
Wow, did they move fast! I was ready - had the orange juice opened, straw in, she drank it down well before the staff made it back with peanut butter, jelly and saltines. We took are of that little blip (which was probably the reason for her morning symptoms).
After all the test results came in, and the second set of blood work confirmed no heart attack and no infection, things drastically slowed down. Geriatrics got involved, and Mom was admitted for medication and behavioral review to determine a best care plan. By 9:30 that night (after being admitted to the ER at 8 a.m.), Mom was in her room in the Geriatric Psych suite (I'm being kind).
So that's what going "south" means, when you are old, and have dementia. We're all still in the middle of "One Flew Over the Cuckoo's Nest" land right now, as the geriatric team sends its folks in to observe her and see what works. Medications are also being reviewed, particularly those that have changed in the past few months.
These medications are the ones that you give people when you want them to be quiet, to stop talking so much, to just sit and be calm. Dad wanted these, and asked over and over for them for her. He wanted her to sleep through the night. He thought these medications would help her to be less upset, less worried.
Instead, what these drugs did was to exacerbate her anxiety, frustration, decrease her need for sleep, and mess with her appetite. Because dementia masks everything, the only way to see what works is to watch her in a controlled environment. This sugar thing, it seems, was the only way to get all the medical people in one place, during a period of time to actually watch MOM...to find out what may work, and to control what's going on with medications a bit better.
These doctors outside that we've been dealing with? They don't talk to each other, they don't share information that we've asked them to share with each other. There is no consultation going on. One doctor says he only deals with the dementia. The other says he deals with her physical body. Another says he can't really deal with her brain because she has dementia, but puts her on ANOTHER med anyway. Not one of these 3 doctors communicated with each other over the past 4 months, even though we were insistent and brought information back and forth. Uh-huh.
So, now? Now, we wait. We wait for the reports to come from the team. We wait for the changing times that we will all need to adjust to. We wait.
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