My husband is suspected of maybe having this but dr's are still not sure. He has some symptoms but not others...and he doesn't fall either or have hallucinations. please let me know what your loved one's symptoms are. I would like to compare
Thanks Piglit. I am managing. but not well. My children live in other states and I have no g-children to spell me ,so basically~~ It's just me. I must do ever thing ,from showering, dressing, watching to see that he doesn't fall, as he has been injured and hospitalized twice from falls recently. . Everything about this disease is horrible. He has probably had some strokes as he has little use of his right arm and foot. Seeing Neurologist soon and hope to get some advice from him. I'm sure I'll be forced to get some help soon. Thanks for your concern.
My husband is suspected of maybe having this but dr's are still not sure. He has some symptoms but not others...and he doesn't fall either or have hallucinations. please let me know what your loved one's symptoms are. I would like to compare
My husband 73 years old and his brother died of LBD in 2017 and according to what i have read or am reading and attending the support group he has symptoms such as Yelling out screams, sleepless night, vision is very poor, walks as if he is going to fall, not sure of the steps he is taking, does not want a question he has ask to go into details, calls banks every day to find out how much money he has and what checks were processed, goes to grocer to shop and brings home all items he thinks he MIGHT eat. Vision is very poor needs to have cataracts removed so now eyes are very dry so they are being build up. His doctor tells him at every visit there is nothing wrong with him, He will not order any test for him and he does not do any test himself. My husband had 100% confidence in his primary care so I have both against what I observe. What recourse do I have. My husband has the temp at 82 degrees because he is cold, he has purchased about 6-8 space heaters so that he can keep warm. Today it was so hot in the house I went for a drive so I could cool off. I can not share anything with him that is positive or negative he tells me he already knew that, sad for him and me. What recourse do I have for him?
My husband 73 years old and his brother died of LBD in 2017 and according to what i have read or am reading and attending the support group he has symptoms such as Yelling out screams, sleepless night, vision is very poor, walks as if he is going to fall, not sure of the steps he is taking, does not want a question he has ask to go into details, calls banks every day to find out how much money he has and what checks were processed, goes to grocer to shop and brings home all items he thinks he MIGHT eat. Vision is very poor needs to have cataracts removed so now eyes are very dry so they are being build up. His doctor tells him at every visit there is nothing wrong with him, He will not order any test for him and he does not do any test himself. My husband had 100% confidence in his primary care so I have both against what I observe. What recourse do I have. My husband has the temp at 82 degrees because he is cold, he has purchased about 6-8 space heaters so that he can keep warm. Today it was so hot in the house I went for a drive so I could cool off. I can not share anything with him that is positive or negative he tells me he already knew that, sad for him and me. What recourse do I have for him?
My husband 73 years old and his brother died of LBD in 2017 and according to what i have read or am reading and attending the support group he has symptoms such as Yelling out screams, sleepless night, vision is very poor, walks as if he is going to fall, not sure of the steps he is taking, does not want a question he has ask to go into details, calls banks every day to find out how much money he has and what checks were processed, goes to grocer to shop and brings home all items he thinks he MIGHT eat. Vision is very poor needs to have cataracts removed so now eyes are very dry so they are being build up. His doctor tells him at every visit there is nothing wrong with him, He will not order any test for him and he does not do any test himself. My husband had 100% confidence in his primary care so I have both against what I observe. What recourse do I have. My husband has the temp at 82 degrees because he is cold, he has purchased about 6-8 space heaters so that he can keep warm. Today it was so hot in the house I went for a drive so I could cool off. I can not share anything with him that is positive or negative he tells me he already knew that, sad for him and me. What recourse do I have for him?
If you can, go to a specialist. You're seeing a lot of symptoms and the doctor is a liability for your husband. Some medications may help these symptoms but the doctor can't be in denial. Good luck.
the reason we started going to the dr's in the first place was breathing issues, personality changes, lack of empathy and extreme fatigue. Then I began noticing small details with his memory, rigitity in his torso and neck and shuffling gait. He doens't fall and hasnt and has no tremors. Just a totally different person that what he was and now he hums or make noises all the time ( even at sleep) and he isn't aware of it . HIs memory is really bad; long term is fine, short term is awful plus now he has developed obsession w/ lottery tickets too. Here is a guy who never spent money and now I have to hide money and credit cards cause it is like he lost his filter in making good decisilons. He is on levadopa which has helped the rigidity in his torso and is on exelon and namenda but there isn't any difference at all. His sleep patterns are bad too- even though he is on serequel to help him sleep he is up a few times a night and is usually up at 500 to start his day. It is just really frustrating cause he doesnt fit into any one category and doens't have a lot of the main symptoms that he should have ( like hallunications for the DLB) but no dr can agree so I am looking to help . Plus his breathing still sucks and no one can figure out why... his pulmpnary work outs came out clean....So here I am still searching for answers...
Hello @sturg9876 and welcome to Mayo Clinic Connect. I can see from your profile information that you are recently now in a caregiver role for an your loved one who is now 80 years old and recently diagnosed with Lewy Body Dementia and Mythesnia Gravis.
You mention that you are here to learn how to help them life the best of the rest of their days. That is such a loving act.
As you may have seen from the posts before yours, there are several members who have recently participated in this discussion who may be able to share their experiences with you. @wifehenry recently joined the discussion and she is a caregiver as well, to her husband. Other members like @marcia101@mizmish has also been here and sharing.
What do you see as your greatest challenge and opportunity as you move forward with this diagnosis for your loved one?
Thank you for the welcome! This is a new beginning for myself and my LO, major changes for both. My LO is a strong, independent person who has been on their own for many many years, sticks to themselves and doesn't have any hobbies that will transfer over to this new life's journey.
My LO has Lewy Body Dementia, however, I believe he has Dementia with Lewy Bodies as the dementia came first; they were also diagnosed with Mythesnia Gravis and Diabetes.
My greatest challenges will be to keep them active, interested in life, eating healthy (which once they becomes immobile, I can be assured they won't be eating candy!), trying to convince them to wear Depends and getting them to move downstairs so they won't fall down the stairs.
My LO lives in a small community, the next 'big' town, has the only neuro around. From Facebook, research and Google I have found some amazing groups for support, advice and medical information; I also found a Neurobehavior and Memory Clinic,.I believe 1 if 12 in the US, quite a ways from us. I was blessed with an appointment.in November or hopefully sooner on a cancelled appointment. The Neuro in the 'big' town close to us made my LO walk and asked them 3 questions and said, that's LBD; He's also who diagnosed LO with Mythesnia Gravis. I'm going to the experts now 🙂
My greatest opportunities will be the groups I'm in for support, comfort and advice, the medical advice and support I get from the Mayo Clinic and the LBDA local support group and their awesome meetings. Should we stay in this area, I have medical support here in the form of their NP and home health nurse.
Thank you again for your welcome. I'm grateful I found this site. I have already learned so much. ❤️
Edited to add: I welcome any and all advice, friendships, and all else who have been on this journey or just starting out, like me. I'll be an ear to listen, vent, bounce things off of....I think we can all be of comfort and support for each other
Thank you for the welcome! This is a new beginning for myself and my LO, major changes for both. My LO is a strong, independent person who has been on their own for many many years, sticks to themselves and doesn't have any hobbies that will transfer over to this new life's journey.
My LO has Lewy Body Dementia, however, I believe he has Dementia with Lewy Bodies as the dementia came first; they were also diagnosed with Mythesnia Gravis and Diabetes.
My greatest challenges will be to keep them active, interested in life, eating healthy (which once they becomes immobile, I can be assured they won't be eating candy!), trying to convince them to wear Depends and getting them to move downstairs so they won't fall down the stairs.
My LO lives in a small community, the next 'big' town, has the only neuro around. From Facebook, research and Google I have found some amazing groups for support, advice and medical information; I also found a Neurobehavior and Memory Clinic,.I believe 1 if 12 in the US, quite a ways from us. I was blessed with an appointment.in November or hopefully sooner on a cancelled appointment. The Neuro in the 'big' town close to us made my LO walk and asked them 3 questions and said, that's LBD; He's also who diagnosed LO with Mythesnia Gravis. I'm going to the experts now 🙂
My greatest opportunities will be the groups I'm in for support, comfort and advice, the medical advice and support I get from the Mayo Clinic and the LBDA local support group and their awesome meetings. Should we stay in this area, I have medical support here in the form of their NP and home health nurse.
Thank you again for your welcome. I'm grateful I found this site. I have already learned so much. ❤️
Edited to add: I welcome any and all advice, friendships, and all else who have been on this journey or just starting out, like me. I'll be an ear to listen, vent, bounce things off of....I think we can all be of comfort and support for each other
Hello @sturg9876, along with Amanda (@amandarjro), I would like to welcome you to Mayo Connect. You are asking great questions as you come alongside of someone with a recent diagnosis of LBD. I applaud you for your forward-thinking and planning.
I would like to introduce you to @kristin816. Kristin recently posted about the changes she helped to make for her parents after her dad's diagnosis of LBD. Here is the link to that discussion, https://connect.mayoclinic.org/comment/601239/.
As you read her post you will see how she began planning for their future before the need was apparent as she understood the stress of a move and the changes that would be needed. I encourage you to post to her. You can start the conversation with @kirstin816 and that way she will get a notification that you have posted.
Other than being closer to good medical help and needing to eliminate the stairs, what other changes do you see that your loved one (LO) will need in the future?
Thank you for the welcome! This is a new beginning for myself and my LO, major changes for both. My LO is a strong, independent person who has been on their own for many many years, sticks to themselves and doesn't have any hobbies that will transfer over to this new life's journey.
My LO has Lewy Body Dementia, however, I believe he has Dementia with Lewy Bodies as the dementia came first; they were also diagnosed with Mythesnia Gravis and Diabetes.
My greatest challenges will be to keep them active, interested in life, eating healthy (which once they becomes immobile, I can be assured they won't be eating candy!), trying to convince them to wear Depends and getting them to move downstairs so they won't fall down the stairs.
My LO lives in a small community, the next 'big' town, has the only neuro around. From Facebook, research and Google I have found some amazing groups for support, advice and medical information; I also found a Neurobehavior and Memory Clinic,.I believe 1 if 12 in the US, quite a ways from us. I was blessed with an appointment.in November or hopefully sooner on a cancelled appointment. The Neuro in the 'big' town close to us made my LO walk and asked them 3 questions and said, that's LBD; He's also who diagnosed LO with Mythesnia Gravis. I'm going to the experts now 🙂
My greatest opportunities will be the groups I'm in for support, comfort and advice, the medical advice and support I get from the Mayo Clinic and the LBDA local support group and their awesome meetings. Should we stay in this area, I have medical support here in the form of their NP and home health nurse.
Thank you again for your welcome. I'm grateful I found this site. I have already learned so much. ❤️
Edited to add: I welcome any and all advice, friendships, and all else who have been on this journey or just starting out, like me. I'll be an ear to listen, vent, bounce things off of....I think we can all be of comfort and support for each other
Hello @sturg9876 Nice to e-meet you here on Mayo Connect. I am Scott and I was one of the secondary caregivers for my MIL during her years with dementia. I also was my wife's primary caregiver during her 14+ year war with brain cancer, which produced many dementia-like symptoms for her.
One of the most valuable things my wife and I did immediately after her diagnosis was to complete all of her end-of-life planning. We did all the usual things, such as wills, estate planning, etc., plus she had several items she wanted to gift to others, which she did while alive. This brought not only her, but the recipients too, a great deal of happiness in tough times. We also did all advance directives, POA decisions, and HIPPA decisions. As odd as it may sound the HIPPA decisions helped a ton! We put our adult children on the form so the doctors could talk directly to them and vice versa, which was a terrific help to them and especially to me.
She also had very specific ideas about the Celebration of Life she wanted rather than a funeral so set those up as well. It was nice to know exactly what she wanted and not have to guess.
Her mother did not do these things and it made the time of her death far more difficult for her family. My sister, who passed from COVID also did not do any advance planning and it has become a mess for her daughter to have to sort through.
I also know in my wife case her mental condition/capacities, etc. changed with no notice and at very different times and what we could do one day we couldn't the very next. It did teach me that caregivers need to be ready to be flexible as the journey zigs, zags, and swerves unexpectedly.
Feel free to ask any questions -- I'm always happy to share what I learned.
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Thanks Piglit. I am managing. but not well. My children live in other states and I have no g-children to spell me ,so basically~~ It's just me. I must do ever thing ,from showering, dressing, watching to see that he doesn't fall, as he has been injured and hospitalized twice from falls recently. . Everything about this disease is horrible. He has probably had some strokes as he has little use of his right arm and foot. Seeing Neurologist soon and hope to get some advice from him. I'm sure I'll be forced to get some help soon. Thanks for your concern.
Hi please let me know Mizmish how you get on after seeing the neurologist. Take care here if you need me anytime Piglit
My husband 73 years old and his brother died of LBD in 2017 and according to what i have read or am reading and attending the support group he has symptoms such as Yelling out screams, sleepless night, vision is very poor, walks as if he is going to fall, not sure of the steps he is taking, does not want a question he has ask to go into details, calls banks every day to find out how much money he has and what checks were processed, goes to grocer to shop and brings home all items he thinks he MIGHT eat. Vision is very poor needs to have cataracts removed so now eyes are very dry so they are being build up. His doctor tells him at every visit there is nothing wrong with him, He will not order any test for him and he does not do any test himself. My husband had 100% confidence in his primary care so I have both against what I observe. What recourse do I have. My husband has the temp at 82 degrees because he is cold, he has purchased about 6-8 space heaters so that he can keep warm. Today it was so hot in the house I went for a drive so I could cool off. I can not share anything with him that is positive or negative he tells me he already knew that, sad for him and me. What recourse do I have for him?
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1 ReactionHello @wifehenry and welcome to Mayo Clinic Connect. I am sorry to hear of your husband's symptoms. This sounds very difficult for you both.
Is your husband currently under the care of a neurologist? If not, you might request a neurological consult. This would be a good first step.
In the meantime, I would like to invite you to an online event about LBD that is being hosted by Mayo Clinic on May 3. Here is the link to find out more information and to register.
https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-what-are-your-questions/
As you can see, you can post questions that can be addressed by the presenters. I hope that you can attend.
I look forward to hearing from you again. Will you post again with an update?
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2 ReactionsIf you can, go to a specialist. You're seeing a lot of symptoms and the doctor is a liability for your husband. Some medications may help these symptoms but the doctor can't be in denial. Good luck.
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Helpful -
Hug
1 Reaction.
Hello @sturg9876 and welcome to Mayo Clinic Connect. I can see from your profile information that you are recently now in a caregiver role for an your loved one who is now 80 years old and recently diagnosed with Lewy Body Dementia and Mythesnia Gravis.
You mention that you are here to learn how to help them life the best of the rest of their days. That is such a loving act.
As you may have seen from the posts before yours, there are several members who have recently participated in this discussion who may be able to share their experiences with you. @wifehenry recently joined the discussion and she is a caregiver as well, to her husband. Other members like @marcia101 @mizmish has also been here and sharing.
What do you see as your greatest challenge and opportunity as you move forward with this diagnosis for your loved one?
-
Like -
Helpful -
Hug
2 ReactionsThank you for the welcome! This is a new beginning for myself and my LO, major changes for both. My LO is a strong, independent person who has been on their own for many many years, sticks to themselves and doesn't have any hobbies that will transfer over to this new life's journey.
My LO has Lewy Body Dementia, however, I believe he has Dementia with Lewy Bodies as the dementia came first; they were also diagnosed with Mythesnia Gravis and Diabetes.
My greatest challenges will be to keep them active, interested in life, eating healthy (which once they becomes immobile, I can be assured they won't be eating candy!), trying to convince them to wear Depends and getting them to move downstairs so they won't fall down the stairs.
My LO lives in a small community, the next 'big' town, has the only neuro around. From Facebook, research and Google I have found some amazing groups for support, advice and medical information; I also found a Neurobehavior and Memory Clinic,.I believe 1 if 12 in the US, quite a ways from us. I was blessed with an appointment.in November or hopefully sooner on a cancelled appointment. The Neuro in the 'big' town close to us made my LO walk and asked them 3 questions and said, that's LBD; He's also who diagnosed LO with Mythesnia Gravis. I'm going to the experts now 🙂
My greatest opportunities will be the groups I'm in for support, comfort and advice, the medical advice and support I get from the Mayo Clinic and the LBDA local support group and their awesome meetings. Should we stay in this area, I have medical support here in the form of their NP and home health nurse.
Thank you again for your welcome. I'm grateful I found this site. I have already learned so much. ❤️
Edited to add: I welcome any and all advice, friendships, and all else who have been on this journey or just starting out, like me. I'll be an ear to listen, vent, bounce things off of....I think we can all be of comfort and support for each other
-
Like -
Helpful -
Hug
3 ReactionsHello @sturg9876, along with Amanda (@amandarjro), I would like to welcome you to Mayo Connect. You are asking great questions as you come alongside of someone with a recent diagnosis of LBD. I applaud you for your forward-thinking and planning.
I would like to introduce you to @kristin816. Kristin recently posted about the changes she helped to make for her parents after her dad's diagnosis of LBD. Here is the link to that discussion, https://connect.mayoclinic.org/comment/601239/.
As you read her post you will see how she began planning for their future before the need was apparent as she understood the stress of a move and the changes that would be needed. I encourage you to post to her. You can start the conversation with @kirstin816 and that way she will get a notification that you have posted.
Other than being closer to good medical help and needing to eliminate the stairs, what other changes do you see that your loved one (LO) will need in the future?
-
Like -
Helpful -
Hug
3 ReactionsHello @sturg9876 Nice to e-meet you here on Mayo Connect. I am Scott and I was one of the secondary caregivers for my MIL during her years with dementia. I also was my wife's primary caregiver during her 14+ year war with brain cancer, which produced many dementia-like symptoms for her.
One of the most valuable things my wife and I did immediately after her diagnosis was to complete all of her end-of-life planning. We did all the usual things, such as wills, estate planning, etc., plus she had several items she wanted to gift to others, which she did while alive. This brought not only her, but the recipients too, a great deal of happiness in tough times. We also did all advance directives, POA decisions, and HIPPA decisions. As odd as it may sound the HIPPA decisions helped a ton! We put our adult children on the form so the doctors could talk directly to them and vice versa, which was a terrific help to them and especially to me.
She also had very specific ideas about the Celebration of Life she wanted rather than a funeral so set those up as well. It was nice to know exactly what she wanted and not have to guess.
Her mother did not do these things and it made the time of her death far more difficult for her family. My sister, who passed from COVID also did not do any advance planning and it has become a mess for her daughter to have to sort through.
I also know in my wife case her mental condition/capacities, etc. changed with no notice and at very different times and what we could do one day we couldn't the very next. It did teach me that caregivers need to be ready to be flexible as the journey zigs, zags, and swerves unexpectedly.
Feel free to ask any questions -- I'm always happy to share what I learned.
Strength, courage, and peace
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Like -
Helpful -
Hug
5 Reactions