Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let’s use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@macbeth

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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Some types of pacemakers allow for an MRI. If you know the name of the device you could google it and probably find out. The cardiologist can tell you also. Best of luck

Liked by macbeth

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@macbeth

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 a pacemaker too, I was told no MRI’s, It might depend on how old it is. Also I will be having a cat scan sometime this month, to see if either of the lung cancer is growing then to the oncologist. I have been really tired, emotional for the past several weeks and not sleeping very good. Guess lung cancers, all cancer does odd things to your body. I went to my Bible study program yesterday and along with the study, I found that there five ladies plus some of their husbands with cancer here in my Friday Bible study and more know someone in this little town (perhaps 800 full time citizens) so our Bible study ladies will be our support group. Will see how that goes. At least that is a place I feel I can cry if I need to. Nancy Bush

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@nocaregiverneedednohelpavailable

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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Hi again @macbeth. I noticed with my wife the amount of energy she required for socialization at times was not how she wished to spend that energy. Focusing on others, especially as her eyesight, hearing, and cognition declined was highly energy intensive for her, so she chose to limit it.

She also suffered her entire 14 years with debilitating anxiety. I can only suggest, based on my wife’s experience with her anxiety, you might want to talk to your medical team in an effort to try and avoid letting the anxiety get too far ahead of any help, which might be able to be provided by medications

Peace and strength,

Liked by macbeth

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@nocaregiverneedednohelpavailable

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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@caregiver49
Thank you so much for your thoughts. I, too, thought about medical marijuana, and asked about it the last time we were at the VA, and was told that, since the VA is a federal agency, and the Feds do not approve of medical marijuana, even in states where it is legal, that is not an option through them, but, of course, I would be free to pursue that through a private or ‘regular’ clinic. The doctor at the VA also told me, at that time, that it may exacerbate the dementia. I really appreciate your thoughts and ideas, and agree with them.

As far as the back and forth diagnoses, I also agree with you. I don’t want to get political here, but I must, but just marginally. My husband, a Vietnam vet, already suffers from ischemic heart disease, a condition more prevalent among Vietnam vets due to Agent Orange exposure. There is nothing in the make-up of ischemia, that directs it specifically to the blood vessels of the heart, and it seems like a no-brainier, to me, that it can build up anywhere, including the blood vessels to the brain. I have filed claims several times, but, since this has not yet been officially recognized by the government as a result of AO exposure, the claims have been denied. I have explained my position to doctors at the VA, but they always have always disagreed, until, finally, a comp doctor took out a list of recognized Agent Orange exposure related diseases, handed it to me, and told me that those items on the list were the only things she could discuss with me, that, since AO exposure already had been linked to a higher rate of Parkinson’s in Vietnam vets, that it could be, and probably will be linked to a higher rate of dementia and early onset dementia in Vietnam vets some day, but that it will be after many more years of testing. In my nasty, little, cynical mind, I’m thinking, “Yeah, you’re just waiting for more of them to die to limit your liability.” They diagnosed my husband with Alzheimer’s, but friends and relatives who have had family members diagnosed with Alzheimer’s all agree that whatever my husband has is different. We all feel that they are just trying to limit their liability. And, yes, there may have been recent improvements in the VA, but they still have a long way to go.

So, now you have it…my feelings about the government and Agent Orange exposure. With this, I will apologize to those of you whom I may have offended with my anger and cynicism, and I will try not to bring this up again on this site, unless invited. Really, at this point there is no more to say, except that, I feel so strongly about this that, even if my husband would pass tomorrow, I will continue to fight for Vietnam vets on this issue.

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@nocaregiverneedednohelpavailable

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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@IndianaScott
Thank you. In spite of his difficulties, my husband is the one who most often wants to go out. We don’t really have a medical “team”, since the doctors who come to our local clinic seem to keep moving on to bigger and better places, but I will try to find a local doctor who will be helpful in this area. My husband also utilizes a VA clinic, but it is 45 miles away, and they seem, generally, overworked and uninterested. But, I appreciate the advice, and will try to get on that.

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@macbeth

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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Thank you. I’ve already been told it is a no go with this pacemaker. His was implanted in 2010, but they’ve made advances since then. His is “old”.

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@macbeth

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
My heart is with you. I am sending you strength through kind and positive thoughts.

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@nocaregiverneedednohelpavailable

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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@caregiver49, you may be interested in reading this info from Mayo Clinic on medical marijuana http://mayocl.in/2c3X2cz
Additionally you can read some of the insights about medical marijuana from fellow Connect members in these 2 discussions:

– Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx
– CBD http://mayocl.in/2cBCdDn

Liked by macbeth

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@macbeth

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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Thank you, I really need strength & prayers from everywhere. Just really emotional for the past several month. am not a “crier” complainer, or anything like that. I have been a strong person in I anything, including jobs I have had, family. This stuff is very
not me! Nancy

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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 cried for 6 mos after my hubby was diagnosed with glioblastoma, operated on, and treated so far. I seem to have leveled out some now. Cry, get it out of your system, then take charge as the Caregiver
That’s what I did

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@macbeth

@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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Hey Thanks, It helps to talk also I understand, but I have a hard time with that too lately. Perhaps things will calm down. Nancy
shortshot80.

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@macbeth

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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Hi @shortshot80. No need to apologize nor explain. We fellow caregivers get it! Emotions run the entire gamut — sometime in sync with your patient’s often times at odd with them. I was often criticized for crying and complaining, when all I was doing was explaining!

For awhile I would send periodic updates on my wife’s condition to family members and was told to my face I was sending them to get attention, get people to feel sorry for me, drum up sympathy, and whine. It was devastating to hear that. Since no one was asking about, or helping with, my wife I thought I was doing right by keeping family in the loop on her condition and care. Needless to say after that input I quit them to anyone other than our children.

So there is no way we think communicating is crying or complaining! We know all caregivers sometimes need a shoulder to cry on and a nonjudgmental ear to listen. It is our hope we provide that here.

Communicating your concerns, fears, anger, etc. on caregiving is part of the journey and sometimes I found just saying something helped lift the burden of the journey.

Peace and strength,

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@macbeth

@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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@macbeth and @shortshot80 I wish you strength on the roller coaster of caregiving. If our journeys were flat, smooth, and easy everyone would want to join us 🙂

It is not a ride to enjoy, but knowing there will be hills to climb and steep drops we will encounter helps when they come.

I had to really retrain myself to listen better to my own emotions and let them guide me rather than me trying to always bury them.

I send you strength and peace

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@macbeth

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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@IndianaScott Your maturity and wisdom to be able to respond (rather than react) to such criticism is unbelievable. Not many of us could have digested that criticism with such grace! Kudos!! Teresa

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