I feel lost: We don’t have a diagnosis yet

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

As I read your post I saw my husband and myself in some of your descriptions. My husband was diagnosed with lewy body dementia. He had the lumber puncture test which told us definitively what the diagnosis was. My husband is angry. He is on zoloft to help with his moods. He sometimes quits because he read not good
for you. Then I have to get him started up again. He also tells me it is my fault the neurologist said he had to have a drivers test and one every 6 months because of his disease progressing. It my fault for alot of things in his mind. I feel for you and hope you are able to take care of yourself.

bobbisedmayr - Thank you for your input. Anger, yep. Some days all day. I even have a song about that anger that I sing in my mind. It goes like this: Oh, It's anger in the morning, anger in the evening, anger at suppertime, he's so angry, angry...... just angry all the time. I sang it to him one day and he stopped dead still and looked at me. Are you talking about me, he asked. My one word response - Yep. The anger toned down for a little bit, but it's back. (I might try for a repeat performance next time he's over the top angry.)

I'm right there with you on everything is my fault. Of course everything is our fault's, that way they can pretend that they're perfect. They do know something is off and they do NOT want to claim it. I do have my husband on a good regimen of vitamins and supplements including Ashwagandha, which I also take. Look into that one if your not taking something to help yourself. A friend told me about it. I researched it and liked what I found. What I can remember from when I was researching it was that it's old as the hills, helps with energy production, immune support and mood and stress management. I can use all of the one's mentioned. I don't know what this zoloft is that you mention, but I'll look it up. I'm guessing that it's a prescription drug? We don't have a lot of experience with those.

As you know, taking care of ourselves can be a struggle....where's the time? My favorite tool for getting my frustrations out of my system is walking the treadmill. I can do that and still keep an ear on what my husband is up to. An added bonus is that he typically wants it after I'm done. Monkey see, monkey do. That doesn't sound exactly right, but it is so true these days. You and I are leading, we've taken over pretty much everything. Husband's are here and can help with simple tasks, just don't expect them to manage anything too complicated, correct?

Thank you for the well wishes, I hope you are going to have a good day today!

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

You guys are the best. I feel like part of the load has been lightened just by being here with others in the same boat. While I know this, it's always good to remember that I am not the first, not the last and not the only. Sounds corny, but it's so very true. I had not even thought about placing him before a diagnosis. This could be why I've been so focused on getting a diagnosis. Our doctor talked to me about IF it happens again, my fear is that IF it happens again I may not live to see another day. Most of you remind to journal and I've got notes on the more prominent events. What all should I be keeping notes on? I've got the list of all vitamins and supplements, his very worst and most scary times....what else should I be recording? I've given our doctor a copy of everything I've stated here.