Heart issues and breathing problems and dealing with dementia

Posted by janet7 @janet7, Apr 7, 2022

https://connect.mayoclinic.org/comment/696897/
I think my husband should be on oxygen while waiting for results of a heart monitor recording his heart beats. Depending on results, he may get a pacemaker. We don’t know how long it will take to get the results and he is having problems breathing. Two doctors have seen him since his hospital visit and neither one suggests oxygen. He wants the do more, but runs out of breath when he tries, so all he can do is sit in a chair. Can someone relate?

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@colleenyoung

Hi @janet7
You wrote in another caregiver discussion:
"Hi Colleen,
We have been in similar situations with Will’s shallow breathing and being very weak and tired. He just had a pacemaker because of Afib and is on a blood thinner to help avoid strokes/heart attacks. He is recovering from the surgery so still tired and weak. Will has heart failure and his lungs keep filling up with fluid and hopefully the pacemaker will help. He also has Dementia and I would like to get him tested for Alzheimer’s, just to rule it out. I am also a caretaker like you. I would like to know if Medicaid can help out financially with caretakers."

I'm responding to you here.
Janet, it can be so challenging to provide care for a loved one's medical issues when they also have dementia. I'm tagging a few very resourceful members like @tsc @billchitwood @joancampy @debbraw @fwentz who may have some tips for you regarding financial support for caregivers through Medicaid and other questions you may have.

Janet, do you have a social worker for you and your husband to help navigate medical needs, finances and such?

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Hi @janet7 - I wish I knew the answer to your question about whether Medicaid could help. This is on my list of things to check out. A couple of years ago, I saw an attorney and she recommended that when we got to the point that I needed placement for my husband in a facility, I should let her know and she would recommend some attorneys who helped with getting Medicaid. We are close, but not there yet. Good luck. And please, if you learn more about this will you share?

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@colleenyoung

Hi @janet7
You wrote in another caregiver discussion:
"Hi Colleen,
We have been in similar situations with Will’s shallow breathing and being very weak and tired. He just had a pacemaker because of Afib and is on a blood thinner to help avoid strokes/heart attacks. He is recovering from the surgery so still tired and weak. Will has heart failure and his lungs keep filling up with fluid and hopefully the pacemaker will help. He also has Dementia and I would like to get him tested for Alzheimer’s, just to rule it out. I am also a caretaker like you. I would like to know if Medicaid can help out financially with caretakers."

I'm responding to you here.
Janet, it can be so challenging to provide care for a loved one's medical issues when they also have dementia. I'm tagging a few very resourceful members like @tsc @billchitwood @joancampy @debbraw @fwentz who may have some tips for you regarding financial support for caregivers through Medicaid and other questions you may have.

Janet, do you have a social worker for you and your husband to help navigate medical needs, finances and such?

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Hi @janet7, my husband was diagnosed withe Alzheimer's Disease about three years ago by a neurologist and neuropsychologist. He had an MRI and a full day of neuropsychological testing which was exhausting for him. He had those tests because I noticed he was using words differently and withdrawing from social activities. Other than for Alzheimer's, his health is good (he broke his hip about three months ago, but is recovering nicely). You mentioned that your husband has dementia. I'm wondering why knowing if he has Alzheimer's would be helpful. Would there be more opportunities for drugs that could help him? Wishing you the best, Teri

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@tsc

Hi @janet7, my husband was diagnosed withe Alzheimer's Disease about three years ago by a neurologist and neuropsychologist. He had an MRI and a full day of neuropsychological testing which was exhausting for him. He had those tests because I noticed he was using words differently and withdrawing from social activities. Other than for Alzheimer's, his health is good (he broke his hip about three months ago, but is recovering nicely). You mentioned that your husband has dementia. I'm wondering why knowing if he has Alzheimer's would be helpful. Would there be more opportunities for drugs that could help him? Wishing you the best, Teri

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I want to find out if he has Alzheimer’s for several reasons: I need to know if there are meds that might be helpful for his Dementia and what care he needs if he does have it. I would like to know if I am giving him the care he needs and maybe enroll him in a study with experimental meds.

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@janet7

I want to find out if he has Alzheimer’s for several reasons: I need to know if there are meds that might be helpful for his Dementia and what care he needs if he does have it. I would like to know if I am giving him the care he needs and maybe enroll him in a study with experimental meds.

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My husband was on donepezil for a while. I think the neurologist said it would help Alzheimer's, but not other forms of dementia. I just read that there's a blood test for Alzheimer's that can measure beta amyloid proteins. If that's true, it could be useful and less of an ordeal than all the neuropsychological testing. I try to keep my husband stimulated by giving him easy chores to do around the house. He doesn't have much interest in reading, listening to music or watching tv. He still likes to eat.

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@tsc

My husband was on donepezil for a while. I think the neurologist said it would help Alzheimer's, but not other forms of dementia. I just read that there's a blood test for Alzheimer's that can measure beta amyloid proteins. If that's true, it could be useful and less of an ordeal than all the neuropsychological testing. I try to keep my husband stimulated by giving him easy chores to do around the house. He doesn't have much interest in reading, listening to music or watching tv. He still likes to eat.

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My husband has been taking
donepezil for awhile but doesn’t help improvement with memory. I am going to take your advice and ask his neurologist for a blood test.
He does work outside because we have a lot of trees and he cuts them up and takes the wood to the forest in the back so the woodpiles don’t get so large. He also does work inside to help me. I do notice he is taking more naps during the day but he needs to because he works so hard.

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@janet7

My husband has been taking
donepezil for awhile but doesn’t help improvement with memory. I am going to take your advice and ask his neurologist for a blood test.
He does work outside because we have a lot of trees and he cuts them up and takes the wood to the forest in the back so the woodpiles don’t get so large. He also does work inside to help me. I do notice he is taking more naps during the day but he needs to because he works so hard.

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We discontinued the donepezil when my husband's short term memory was worse. He does take a low dose of citalopram now for anxiety. My husband loves to nap or sit in a darkened room for long periods of time. The neurologist told me that's part of the disease - so I don't try to get him up as much as I used to.

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@tsc

We discontinued the donepezil when my husband's short term memory was worse. He does take a low dose of citalopram now for anxiety. My husband loves to nap or sit in a darkened room for long periods of time. The neurologist told me that's part of the disease - so I don't try to get him up as much as I used to.

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My husband takes naps more often and I thought it has something to do with Dementia.

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@debbraw

Hi @janet7 - I wish I knew the answer to your question about whether Medicaid could help. This is on my list of things to check out. A couple of years ago, I saw an attorney and she recommended that when we got to the point that I needed placement for my husband in a facility, I should let her know and she would recommend some attorneys who helped with getting Medicaid. We are close, but not there yet. Good luck. And please, if you learn more about this will you share?

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Yes, of course I will let you know.

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Once again, my husband is having breathing problems. He isn't sure why, so he is starting some medicine that may help. If after a few days he is still having shortness of breath, we will go to the ER as we have done before, and he will have fluid in his lungs taken out. I am wondering if this is going to be ongoing with him?

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@colleenyoung

@janet7, has your husband finished the heart monitor test? Did he or both of you talk to his doctor about his breathing issues and your concerns?

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Hi Coleen, yes, our cardiologist read the report and told us to come back in 2 weeks to make a plan(?) Later that same day, Will was not feeling good and we had to go the ER again. The doctor on call read the same report and told us Will should be on blood thinners and he could get a doctor that night to insert a pacemaker. He said Will had Afib all the time and without a blood thinner, he could have a stroke. We would have had the surgery that night except Will had to be off a certain medication for 5 days before having surgery. In the meantime, he sent us to a cardiologist who referred us to a surgeon. Within a few days, Will had the surgery. He still loses his breath but he was given an inhaler that helps him to breath normally. He does have heart failure, and the shortness of breath and coughing are the symptoms.
I don’t know what the next step would be, but for now, he can function at a slower pace. Needless to say, we switched cardiologists and wouldn’t refer him to anyone. We are very appreciative and grateful to the doctor on call that night who saw Wills problem right away or he may not be here or in a comotose condition.

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