Meet fellow Caregivers - Introduce yourself

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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I have early onset Alzheimer's. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So...I hear you. I am sending you strength, prayers, and good vibes!

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I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So...I hear you. I am sending you strength, prayers, and good vibes!

Jump to this post

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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