Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Dear Group I haven't been able to read or write much for some time now due to dealing with my mother and her latest escapades. She was only allowed to stay one month in the last nursing home I moved her to and I now have her settled into an Alzheimer's Unit which is locked tight. To say she has been difficult would be a gross understatement, to say the least. I have been spending time researching dementias as I have said all along I didn't feel she had Alzheimer's but I had no idea what it really was. My doctor suggested I try to match the symptoms with the different dementias and try to build a timeline of her progression to see if I could come up with something. He felt I would be able to make more sense out of it rather than to depend on brain scans and tests for now since nothing has been evident up to this point. The nursing home also agreed it wasn't Alzheimer's either but couldn't say much more than that other than she just didn't fit any pattern they had seen. She cut off her bracelets, learned the codes to the doors, set off the fire alarms, talked the pharmacist into letting her out, watched for maximum confusion times and off she would go. The top distance was 1 mile from the nursing home in a very short period of time. She also made it to a construction site about half a mile away and almost had the people convinced to call the police before the head nurse could get her loaded back up. She went out every door in the building, locked or not!! Now you know why 1 month was enough for this nursing home and it is a well staffed home with people everywhere. Mother won the award for the most difficult patient to contain so you can imagine how hard it was for me to find another place willing to accept her. Most of them just looked at me and laughed. It's been a long hard week here in Kansas. My best guess now is that she has Pick's Disease or a Frontal-temporal lobe dementia which comes under the heading of Other Dementias listed under Alzheimer's. In my research I found that most of the neurological disorders more than over lap, which most of us already knew. What I didn't know was ALS and some of the disorders we deal with in MSA seem to keep popping up in conjunction with this. It looks like they are trying to pull several of these in under one name much like they have done with MSA. So, I continue my journey trying to see what else I can find. I am still looking for a researcher who will accept the brain donation. I haven't heard anything back from the Alzheimer Assoc and I can't seem to find anyone connected with KU Med that will give me a straight answer. I think I might try Omaha next. I know timing is vital in making the transfer when needed so I'm trying to work through it. Enough ramblings for now. Hope all of you are doing ok. >From the clear and starry skies of Kansas Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Sally: I just got the chance to read your update for Feb. Sorry that things are so hard with your mother. I understand what it's like , I saw it with my girl friend's mother. She was forever trying to fine a home that would keep her. I hope that you have found the one that will work and you get the rest that you need. The stress is what is the hardest and you've had more then you need. Take Care Vera ******************************************* Subject: Lesline Update for Feb Dear Group I haven't been able to read or write much for some time now due to dealing with my mother and her latest escapades. She was only allowed to stay one month in the last nursing home I moved her to and I now have her settled into an Alzheimer's Unit which is locked tight. To say she has been difficult would be a gross understatement, to say the least. I have been spending time researching dementias as I have said all along I didn't feel she had Alzheimer's but I had no idea what it really was. My doctor suggested I try to match the symptoms with the different dementias and try to build a timeline of her progression to see if I could come up with something. He felt I would be able to make more sense out of it rather than to depend on brain scans and tests for now since nothing has been evident up to this point. The nursing home also agreed it wasn't Alzheimer's either but couldn't say much more than that other than she just didn't fit any pattern they had seen. She cut off her bracelets, learned the codes to the doors, set off the fire alarms, talked the pharmacist into letting her out, watched for maximum confusion times and off she would go. The top distance was 1 mile from the nursing home in a very short period of time. She also made it to a construction site about half a mile away and almost had the people convinced to call the police before the head nurse could get her loaded back up. She went out every door in the building, locked or not!! Now you know why 1 month was enough for this nursing home and it is a well staffed home with people everywhere. Mother won the award for the most difficult patient to contain so you can imagine how hard it was for me to find another place willing to accept her. Most of them just looked at me and laughed. It's been a long hard week here in Kansas. My best guess now is that she has Pick's Disease or a Frontal-temporal lobe dementia which comes under the heading of Other Dementias listed under Alzheimer's. In my research I found that most of the neurological disorders more than over lap, which most of us already knew. What I didn't know was ALS and some of the disorders we deal with in MSA seem to keep popping up in conjunction with this. It looks like they are trying to pull several of these in under one name much like they have done with MSA. So, I continue my journey trying to see what else I can find. I am still looking for a researcher who will accept the brain donation. I haven't heard anything back from the Alzheimer Assoc and I can't seem to find anyone connected with KU Med that will give me a straight answer. I think I might try Omaha next. I know timing is vital in making the transfer when needed so I'm trying to work through it. Enough ramblings for now. Hope all of you are doing ok. >From the clear and starry skies of Kansas Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Sally: I just got the chance to read your update for Feb. Sorry that things are so hard with your mother. I understand what it's like , I saw it with my girl friend's mother. She was forever trying to fine a home that would keep her. I hope that you have found the one that will work and you get the rest that you need. The stress is what is the hardest and you've had more then you need. Take Care Vera ******************************************* Subject: Lesline Update for Feb Dear Group I haven't been able to read or write much for some time now due to dealing with my mother and her latest escapades. She was only allowed to stay one month in the last nursing home I moved her to and I now have her settled into an Alzheimer's Unit which is locked tight. To say she has been difficult would be a gross understatement, to say the least. I have been spending time researching dementias as I have said all along I didn't feel she had Alzheimer's but I had no idea what it really was. My doctor suggested I try to match the symptoms with the different dementias and try to build a timeline of her progression to see if I could come up with something. He felt I would be able to make more sense out of it rather than to depend on brain scans and tests for now since nothing has been evident up to this point. The nursing home also agreed it wasn't Alzheimer's either but couldn't say much more than that other than she just didn't fit any pattern they had seen. She cut off her bracelets, learned the codes to the doors, set off the fire alarms, talked the pharmacist into letting her out, watched for maximum confusion times and off she would go. The top distance was 1 mile from the nursing home in a very short period of time. She also made it to a construction site about half a mile away and almost had the people convinced to call the police before the head nurse could get her loaded back up. She went out every door in the building, locked or not!! Now you know why 1 month was enough for this nursing home and it is a well staffed home with people everywhere. Mother won the award for the most difficult patient to contain so you can imagine how hard it was for me to find another place willing to accept her. Most of them just looked at me and laughed. It's been a long hard week here in Kansas. My best guess now is that she has Pick's Disease or a Frontal-temporal lobe dementia which comes under the heading of Other Dementias listed under Alzheimer's. In my research I found that most of the neurological disorders more than over lap, which most of us already knew. What I didn't know was ALS and some of the disorders we deal with in MSA seem to keep popping up in conjunction with this. It looks like they are trying to pull several of these in under one name much like they have done with MSA. So, I continue my journey trying to see what else I can find. I am still looking for a researcher who will accept the brain donation. I haven't heard anything back from the Alzheimer Assoc and I can't seem to find anyone connected with KU Med that will give me a straight answer. I think I might try Omaha next. I know timing is vital in making the transfer when needed so I'm trying to work through it. Enough ramblings for now. Hope all of you are doing ok. >From the clear and starry skies of Kansas Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Sally: I just got the chance to read your update for Feb. Sorry that things are so hard with your mother. I understand what it's like , I saw it with my girl friend's mother. She was forever trying to fine a home that would keep her. I hope that you have found the one that will work and you get the rest that you need. The stress is what is the hardest and you've had more then you need. Take Care Vera ******************************************* Subject: Lesline Update for Feb Dear Group I haven't been able to read or write much for some time now due to dealing with my mother and her latest escapades. She was only allowed to stay one month in the last nursing home I moved her to and I now have her settled into an Alzheimer's Unit which is locked tight. To say she has been difficult would be a gross understatement, to say the least. I have been spending time researching dementias as I have said all along I didn't feel she had Alzheimer's but I had no idea what it really was. My doctor suggested I try to match the symptoms with the different dementias and try to build a timeline of her progression to see if I could come up with something. He felt I would be able to make more sense out of it rather than to depend on brain scans and tests for now since nothing has been evident up to this point. The nursing home also agreed it wasn't Alzheimer's either but couldn't say much more than that other than she just didn't fit any pattern they had seen. She cut off her bracelets, learned the codes to the doors, set off the fire alarms, talked the pharmacist into letting her out, watched for maximum confusion times and off she would go. The top distance was 1 mile from the nursing home in a very short period of time. She also made it to a construction site about half a mile away and almost had the people convinced to call the police before the head nurse could get her loaded back up. She went out every door in the building, locked or not!! Now you know why 1 month was enough for this nursing home and it is a well staffed home with people everywhere. Mother won the award for the most difficult patient to contain so you can imagine how hard it was for me to find another place willing to accept her. Most of them just looked at me and laughed. It's been a long hard week here in Kansas. My best guess now is that she has Pick's Disease or a Frontal-temporal lobe dementia which comes under the heading of Other Dementias listed under Alzheimer's. In my research I found that most of the neurological disorders more than over lap, which most of us already knew. What I didn't know was ALS and some of the disorders we deal with in MSA seem to keep popping up in conjunction with this. It looks like they are trying to pull several of these in under one name much like they have done with MSA. So, I continue my journey trying to see what else I can find. I am still looking for a researcher who will accept the brain donation. I haven't heard anything back from the Alzheimer Assoc and I can't seem to find anyone connected with KU Med that will give me a straight answer. I think I might try Omaha next. I know timing is vital in making the transfer when needed so I'm trying to work through it. Enough ramblings for now. Hope all of you are doing ok. >From the clear and starry skies of Kansas Sally Quote Link to comment Share on other sites More sharing options...
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