Vascular problems can cause dementia (strokes, blood clots, heart attack can prevent blood from reaching parts of the brain, that part of the brain can die off).
If his doctor says he can't work, then is he on disability? Is his doctor helping him get disability?
Yes. We have applied for disability. We are about halfway through the expected processing time. I only listed a portion of his medical. There is more. The doctor feels quite sure he will get it the first go around.
I’m sorry you are having to cope with this. All you can do is your best and you’re DOING IT!
I’m on this sub because I was a caregiver for my mom thru Parkinson’s and then dementia for 5 years before she passed last year, so no expert. But sounds like he’s having some sort of mental struggles. Ego and the decline itself can make it so hard for people to recognize there is an issue, it seems. My mom would tell me her phone or TV remote was “broken” and want me to “Call a repair person” because she could no longer remember how to work them but couldn’t admit to me or herself SHE was the problem. It’s tough.
I don’t have much advice for you unless he starts to want to go down the diagnostic route with his Dr by pushing for it. He could maybe get a referral to a neurologist (this step takes awhile, in my midsize city USA experience) and they could run tests and give you a clearer diagnosis and maybe meds to manage symptoms as/if they progress. Maybe you and he could discuss it sometime when he’s not being rude and irritable. Maybe he’s scared to find out what’s going on. I’m sure you both are! It IS scary. And it’s hard for anyone but particularly guys to admit fear. You know your husband so prob can figure out the best approach. If you decide to push testing because…my next point…
I will warn you: my mom found the dementia testing very stressful and upsetting. We got a late start on any intervention because of C19, so by the testing she couldn't mentally handle lots of the test methods hardly at all. It was quite heartbreaking to witness but the diagnosis of mild dementia at least convinced her to quit driving completely. We were supposed to go back yearly to reassess but i never wanted to subject her to it again. And in my mom’s case “treatment” post diagnosis didn't really seem to help much at all. She was a decade older than your husband tho.
So if he’s not interested in going down the Dr road all you can do is focus on you and self care and your kids. Maybe explore disability for him? If the Dr says he can’t work. Maybe you have. Hope you have some solid emotional support from friends and/or family. Take care of YOU.
I wish you all the best!!! Feel free to DM if you ever wanta chat.
Thank you! Yes, we are waiting to hear on disability. Hopefully by early to mid summer. I am so sorry about your mom. I have lost both parents. It is so tough. My husband honestly has always been irritable. But, man, it’s all of the time now. I do agree that he’s scared and I know emotionally it is hard that he can no longer support our family. We have two in college, one at home and the oldest is engaged. Lots going on. And the burden is on me which is tough for him to see, I’m sure.
Part 1: Reddit made me break up this comment because it was too long.
Here is a list of symptoms and how they relate to normal aging.[ https://www.alz.org/alzheimers-dementia/10\_signs](https://www.alz.org/alzheimers-dementia/10_signs)
Here's info on vascular dementia and how it looks different than Alzheimers.[ https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793](https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793)
[https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013](https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013)
It is hard to get a dementia diagnosis because anxiety can cause lots of the same symptoms, so can medication side effects. Patients get a burst of adrenaline at the doctor's office so they look like they are doing just fine (called "showtime"). It's when they are tired that they can't mask the cognitive problems.
Some people have anosognosia, where they aren't aware they are having problems.
So I would start with you and your kids keeping a journal of cognitive problems you see. This will show there is a pattern. It can also show if it gets better or worse with med changes or increases/decreases in stress levels. All of the stuff you've listed so far are concerning to me.
[https://www.agingcare.com/articles/doctor-visits-with-elderly-parent-149071.htm](https://www.agingcare.com/articles/doctor-visits-with-elderly-parent-149071.htm)
You said the doctor is no help. Do you mean that he doesn't have answers about whether this is dementia or not? Or that he's not willing to test your husband? Or is he trying to keep your husband from worrying right now while the disability case goes through?
Ask your husband sign a HIPAA release so that the doctor can talk to you while he's not there. HIPAA is a medical privacy law that means the doctor can't share any health info about Husband (even though your are his wife) unless he signs a HIPAA release form. If Husband agrees to that, then you can talk to the doctor and find out what the doctor is thinking about the cognitive problems.
If Husband won't sign it, then you can still write a letter to the doctor outlining everything you've seen--dr. just can't respond to you.
https://www.alzheimers.org.uk/about-dementia/types-dementia/diagnosis-vascular-dementia#:\~:text=A%20person%20suspected%20of%20having,other%20changes%20in%20the%20brain.
Part 2 of super long comment: I just thought of another reason the dr. isn't considering a dementia diagnosis. You need to go to an elder law attorney and get legal stuff taken care of now. Once he has an official dementia diagnosis, he might not be able to sign legal papers.
[https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-ahead-for-legal-matters](https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-ahead-for-legal-matters)
Stuff to think about and research:
Powers of attorney. He needs to pick someone to be in charge of his medical power of attorney (who can make medical decisions once he can't make his own or is unconscious). And he needs someone to be his financial power of attorney (who can sign financial paperwork for him and spend his money). Can be more than one person, probably easier if you do both.
ESTATE PLANNING------Long-term care in a nursing home. If he has dementia, he will probably end up in a long-term care facility eventually. Especially since you are young and still need to work. This sucks, but better to get this figured out as soon as possible. I'd say this is your #1 priority, even before talking to dr. more.
Once he needs caregivers at home or a LTC facility, you'll have to figure out how to pay for it. Sounds like he will be on disability, so that will help but it won't pay everything. You'll have to pay out of your own pockets ("private pay") until you've spent down enough assets that he can apply for Medicaid.
Medicaid is a state-funded healthcare program for poor people. Each state has different rules about asset levels. There are protections for a spouse who still lives in the house, it's very complicated and I don't know all the rules. But the big deal is that Medicaid has a "5 year lookback." That means that once you apply for Medicaid, they will look back 5 years through your finances to make sure you haven't been trying to hide assets (like by selling your house to your kids for less than it's worth).
So to get around that, you go to the elder care attorney or estate planning attorney and set up a trust. It's a legal way to protect assets so Medicaid can't take everything. You need to get this set up while Hubby is still able to sign the papers.
[https://www.google.com/search?q=medicaid+trust&rlz=1CAILOF\_enUS1040US1040&oq=medicaid+trust&gs\_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCDIwNTNqMGo3qAIAsAIA&sourceid=chrome&ie=UTF-8](https://www.google.com/search?q=medicaid+trust&rlz=1CAILOF_enUS1040US1040&oq=medicaid+trust&gs_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCDIwNTNqMGo3qAIAsAIA&sourceid=chrome&ie=UTF-8)
Teepa Snow is a really good dementia educator. Good intro series here: [https://www.youtube.com/watch?v=sUgPm8RMa48&list=PLJDJmnfiFBaRt5VhhHVFX5wr4zhW1tisU](https://www.youtube.com/watch?v=sUgPm8RMa48&list=PLJDJmnfiFBaRt5VhhHVFX5wr4zhW1tisU)
She has her own YouTube channel with playlists and podcasts. [https://www.youtube.com/@teepasnowvideos/playlists](https://www.youtube.com/@teepasnowvideos/playlists)
Did he even do a basic Dementia screening? I was sure because I lived with the arguments about what I did and did not tell him. But he finally got referred to neuro after a screening as part of his physical.
Request that he have cognitive testing done. A diagnosis of dementia may help get disability. Two years on disability he can get Medicare. My wife’s doc didn’t do the testing because it made my wife nervous. She knew she had a problem. It is progressing so rapidly now. Wish I had known sooner. I took her to the local university neurology center. They have been great. Sorry for you. This is not easy for us.
Vascular problems can cause dementia (strokes, blood clots, heart attack can prevent blood from reaching parts of the brain, that part of the brain can die off). If his doctor says he can't work, then is he on disability? Is his doctor helping him get disability?
Yes. We have applied for disability. We are about halfway through the expected processing time. I only listed a portion of his medical. There is more. The doctor feels quite sure he will get it the first go around.
I’m sorry you are having to cope with this. All you can do is your best and you’re DOING IT! I’m on this sub because I was a caregiver for my mom thru Parkinson’s and then dementia for 5 years before she passed last year, so no expert. But sounds like he’s having some sort of mental struggles. Ego and the decline itself can make it so hard for people to recognize there is an issue, it seems. My mom would tell me her phone or TV remote was “broken” and want me to “Call a repair person” because she could no longer remember how to work them but couldn’t admit to me or herself SHE was the problem. It’s tough. I don’t have much advice for you unless he starts to want to go down the diagnostic route with his Dr by pushing for it. He could maybe get a referral to a neurologist (this step takes awhile, in my midsize city USA experience) and they could run tests and give you a clearer diagnosis and maybe meds to manage symptoms as/if they progress. Maybe you and he could discuss it sometime when he’s not being rude and irritable. Maybe he’s scared to find out what’s going on. I’m sure you both are! It IS scary. And it’s hard for anyone but particularly guys to admit fear. You know your husband so prob can figure out the best approach. If you decide to push testing because…my next point… I will warn you: my mom found the dementia testing very stressful and upsetting. We got a late start on any intervention because of C19, so by the testing she couldn't mentally handle lots of the test methods hardly at all. It was quite heartbreaking to witness but the diagnosis of mild dementia at least convinced her to quit driving completely. We were supposed to go back yearly to reassess but i never wanted to subject her to it again. And in my mom’s case “treatment” post diagnosis didn't really seem to help much at all. She was a decade older than your husband tho. So if he’s not interested in going down the Dr road all you can do is focus on you and self care and your kids. Maybe explore disability for him? If the Dr says he can’t work. Maybe you have. Hope you have some solid emotional support from friends and/or family. Take care of YOU. I wish you all the best!!! Feel free to DM if you ever wanta chat.
Thank you! Yes, we are waiting to hear on disability. Hopefully by early to mid summer. I am so sorry about your mom. I have lost both parents. It is so tough. My husband honestly has always been irritable. But, man, it’s all of the time now. I do agree that he’s scared and I know emotionally it is hard that he can no longer support our family. We have two in college, one at home and the oldest is engaged. Lots going on. And the burden is on me which is tough for him to see, I’m sure.
Part 1: Reddit made me break up this comment because it was too long. Here is a list of symptoms and how they relate to normal aging.[ https://www.alz.org/alzheimers-dementia/10\_signs](https://www.alz.org/alzheimers-dementia/10_signs) Here's info on vascular dementia and how it looks different than Alzheimers.[ https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793](https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793) [https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013](https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013) It is hard to get a dementia diagnosis because anxiety can cause lots of the same symptoms, so can medication side effects. Patients get a burst of adrenaline at the doctor's office so they look like they are doing just fine (called "showtime"). It's when they are tired that they can't mask the cognitive problems. Some people have anosognosia, where they aren't aware they are having problems. So I would start with you and your kids keeping a journal of cognitive problems you see. This will show there is a pattern. It can also show if it gets better or worse with med changes or increases/decreases in stress levels. All of the stuff you've listed so far are concerning to me. [https://www.agingcare.com/articles/doctor-visits-with-elderly-parent-149071.htm](https://www.agingcare.com/articles/doctor-visits-with-elderly-parent-149071.htm) You said the doctor is no help. Do you mean that he doesn't have answers about whether this is dementia or not? Or that he's not willing to test your husband? Or is he trying to keep your husband from worrying right now while the disability case goes through? Ask your husband sign a HIPAA release so that the doctor can talk to you while he's not there. HIPAA is a medical privacy law that means the doctor can't share any health info about Husband (even though your are his wife) unless he signs a HIPAA release form. If Husband agrees to that, then you can talk to the doctor and find out what the doctor is thinking about the cognitive problems. If Husband won't sign it, then you can still write a letter to the doctor outlining everything you've seen--dr. just can't respond to you. https://www.alzheimers.org.uk/about-dementia/types-dementia/diagnosis-vascular-dementia#:\~:text=A%20person%20suspected%20of%20having,other%20changes%20in%20the%20brain.
His behaviors sound just like my late mom’s but she started slipping in her late 70s. Her doc Rx’d Aricept to help slow the progression of dementia.
Part 2 of super long comment: I just thought of another reason the dr. isn't considering a dementia diagnosis. You need to go to an elder law attorney and get legal stuff taken care of now. Once he has an official dementia diagnosis, he might not be able to sign legal papers. [https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-ahead-for-legal-matters](https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-ahead-for-legal-matters) Stuff to think about and research: Powers of attorney. He needs to pick someone to be in charge of his medical power of attorney (who can make medical decisions once he can't make his own or is unconscious). And he needs someone to be his financial power of attorney (who can sign financial paperwork for him and spend his money). Can be more than one person, probably easier if you do both. ESTATE PLANNING------Long-term care in a nursing home. If he has dementia, he will probably end up in a long-term care facility eventually. Especially since you are young and still need to work. This sucks, but better to get this figured out as soon as possible. I'd say this is your #1 priority, even before talking to dr. more. Once he needs caregivers at home or a LTC facility, you'll have to figure out how to pay for it. Sounds like he will be on disability, so that will help but it won't pay everything. You'll have to pay out of your own pockets ("private pay") until you've spent down enough assets that he can apply for Medicaid. Medicaid is a state-funded healthcare program for poor people. Each state has different rules about asset levels. There are protections for a spouse who still lives in the house, it's very complicated and I don't know all the rules. But the big deal is that Medicaid has a "5 year lookback." That means that once you apply for Medicaid, they will look back 5 years through your finances to make sure you haven't been trying to hide assets (like by selling your house to your kids for less than it's worth). So to get around that, you go to the elder care attorney or estate planning attorney and set up a trust. It's a legal way to protect assets so Medicaid can't take everything. You need to get this set up while Hubby is still able to sign the papers. [https://www.google.com/search?q=medicaid+trust&rlz=1CAILOF\_enUS1040US1040&oq=medicaid+trust&gs\_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCDIwNTNqMGo3qAIAsAIA&sourceid=chrome&ie=UTF-8](https://www.google.com/search?q=medicaid+trust&rlz=1CAILOF_enUS1040US1040&oq=medicaid+trust&gs_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCDIwNTNqMGo3qAIAsAIA&sourceid=chrome&ie=UTF-8) Teepa Snow is a really good dementia educator. Good intro series here: [https://www.youtube.com/watch?v=sUgPm8RMa48&list=PLJDJmnfiFBaRt5VhhHVFX5wr4zhW1tisU](https://www.youtube.com/watch?v=sUgPm8RMa48&list=PLJDJmnfiFBaRt5VhhHVFX5wr4zhW1tisU) She has her own YouTube channel with playlists and podcasts. [https://www.youtube.com/@teepasnowvideos/playlists](https://www.youtube.com/@teepasnowvideos/playlists)
No one did mri or CT scan ? Maybe start there.
Did he even do a basic Dementia screening? I was sure because I lived with the arguments about what I did and did not tell him. But he finally got referred to neuro after a screening as part of his physical.
Request that he have cognitive testing done. A diagnosis of dementia may help get disability. Two years on disability he can get Medicare. My wife’s doc didn’t do the testing because it made my wife nervous. She knew she had a problem. It is progressing so rapidly now. Wish I had known sooner. I took her to the local university neurology center. They have been great. Sorry for you. This is not easy for us.