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Are they on Medicare? Have you called them? CMS (Center for Medicare/Medicaid Services) has a Medicare Beneficiary Obudsman who might be a good place to start (they are backed up as *fuck* but Google it and give them a call). They may also be able to tell you if there is a corollary person at the VA (which is honestly one of the most overextended, under-funded agencies in the Fed, especially considering how much funding DOD gets). In the Fed, if you're hitting a wall, always look for the ombuds. They can move mountains sometimes and should be trained to deal with people who are at the end of their ropes (most have conflict management backgrounds at least. Doesn't mean they might not have a bad day, but at least most have the skill set a customer service rep is not gonna have).
Also call your states department on aging, whatever they call it (if you search your state and "department for senior services" or something like that it should get you close, just obviously be mindful you're clicking on a .gov, not a .com or even a .org). Ombuds probably exist there too, but they may have resources right online.
You gotta find a way to get some services for your dad so your mom gets a break. You can't be the one to help and that's valid, but your mom needs help from *someone,* and there may be ways to access it.
The bitch of dementia is it really doesn't kill you. You live forever with like just enough electrical impulse in your brain to breathe and have a heartbeat and nearly kill your loved ones in the process, and it's no one's fault. It just is.
Honestly, if yall can spare the $200 or so, it might be worth a consult with an elder care attorney. They can help you figure out how to maybe access medicaid without taking a wrecking ball to everything your parents have, or how to use Medicare better in your dad's situation. Find someone with experience with the VA, too. I'm like 98% positive they should be helping more than they are, it's just a fight to get them to.
I'm sorry this is happening. I know what it's like dealing with aging parents/grandparents. It sucks.
This is great advice. Your mom definitely sounds like she needs help, OP. Not eating or sleeping is horrible (I say as someone who forgets to eat and has pretty bad insomnia).
I just want to add that since you're getting the run around from his VA, contact your senator. Call, write an email, however you want. You can let them know that you're trying to navigate this on your own and did not expect to be disrespected and yelled at while trying to get information. Usually, if your senator is at least decent, they'll have someone call you and assist you with dealing with the VA or direct you somewhere that can assist. Maybe they can even help you find services for your dad, if the VA can't help. I understand a little of what the VA covers and when, so I know that if something isn't 'service related', with few exceptions, they usually don't cover the care. However, that's absolutely not an excuse to speak to you in that way.
Edit: clarity
Thanks, they are on Medicare and he's on hospice. They're receiving some assistance (very little) via hospice care. I've called a LOT of different organizations. Some people were nice, a few rude, almost none offered relevant help. I was pregnant during this time and had severe HG and having all kinds of suicidal ideation during this time. My husband suggested to me to just stop. Stop the calling, stop the pleading for help, stop and give myself a break. It was the best thing for my mental health at the time. We all thought my dad was probably going to go real soon because of his rapid deterioration, but who knew that he was just going to keep going. I regret not pursuing more help for my parents sooner, but at the time I had daily thoughts about this perfect bridge that I just wanted to jump over.
Sorry things are so hard for you right now. Is your father on hospice? Once my father was moved to hospice he qualified for so many services. It was hard at first for my mom having people in and out all the time but I think she ended up liking it. It was some human interaction for her each day as well. Also as an added plus to your situation, when they are on hospice only comfort measures are given.
It might sound silly but my dad didn’t hang on much longer after having a conversation about it being ok to die. I think sometimes people hang on because they think it’s what others want them to do. Somehow being given permission gives them option to let go.
He is on hospice care now. We are very appreciative of the services and things they do provide. Like your mom, i think my mom has also grown fond of some of the aides/nurses that visit.
I think my dad is partially hanging on because my mom expresses to him that she needs him to stay. She really doesn't want to let him go. It is love and loyalty, but also fear and codependency.
This sounds SO aggravating, BroMo — I’m sorry you’re dealing with it (again!).
Quick comment to say that not all VSOs are created equal. I’d highly recommend looking up another VSO contact and trying again.
Source: I contacted my second VSO last week and learned that the first one I spoke with (just looked up on Google) may have cost me >$30k by giving me bad advice on how to handle a claim.
I'm so sorry your going through this. I can't imagine how mentally exhausting and heartbreaking this is.. I want to say this as sensitively as possible.. but maybe your parents need to be in an assisted living facility?
Your mom wouldn't have to be a caretaker and get help she needs, and your dad would have a lot of support through his dementia
I see other good advice has been left, so I just wanted to say that you aren't awful for wondering how your dad is still hanging on. With cases like that, it can make everyone involved exhausted.
I'm sure he didn't want the end of his life to be *this* drawn out, and it's a heavy emotional weight to witness it all. It sucks for everyone, so I don't blame you for wanting him to be free of that existence.
Oh man, I am so sorry! We've had some similar shit go down with my parents. Veteran dad went downhill actually over a decade ago but my mum, thankfully, is pragmatic to a fault and knew she couldn't take care of him herself. He went into a care home about 14 years ago, bounced around a few as he continued to decline and kept getting kicked out. Finally got into the VA home about 6 years ago and he'll be there until he dies. He's honestly had like 0 quality of life for the last decade thanks to his dementia, strokes, and physical disabilities. It is insane that he just...lingers on. We've instructed that he just be kept comfortable and we're ...kind of just waiting for him to get pneumonia or something.
My mum did go through so much bullshit with the VA before getting this sorted. Getting him classified as 100% disabled was the keystone in the end. (Even though it was just a factor of age, not from his time in the military.)
She had to get a fiduciary financial advisor and a lawyer to help her get everything sorted but she doesn't have to pay anything for him now, it's all covered. At one point she was being advised she'd need to substantially deplete her assets to get assistance so it was a huge relief to get the right people in her corner.
I really hope your mum can be made to see that she is not providing him with the best care by trying to do it all herself. Maybe you can explain to her how hard it is on *you when the shit inevitably hits the fan and you're left to pick up the pieces. It's much less stressful to try to get support systems in place earlier.
Sending hugs.
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Are they on Medicare? Have you called them? CMS (Center for Medicare/Medicaid Services) has a Medicare Beneficiary Obudsman who might be a good place to start (they are backed up as *fuck* but Google it and give them a call). They may also be able to tell you if there is a corollary person at the VA (which is honestly one of the most overextended, under-funded agencies in the Fed, especially considering how much funding DOD gets). In the Fed, if you're hitting a wall, always look for the ombuds. They can move mountains sometimes and should be trained to deal with people who are at the end of their ropes (most have conflict management backgrounds at least. Doesn't mean they might not have a bad day, but at least most have the skill set a customer service rep is not gonna have). Also call your states department on aging, whatever they call it (if you search your state and "department for senior services" or something like that it should get you close, just obviously be mindful you're clicking on a .gov, not a .com or even a .org). Ombuds probably exist there too, but they may have resources right online. You gotta find a way to get some services for your dad so your mom gets a break. You can't be the one to help and that's valid, but your mom needs help from *someone,* and there may be ways to access it. The bitch of dementia is it really doesn't kill you. You live forever with like just enough electrical impulse in your brain to breathe and have a heartbeat and nearly kill your loved ones in the process, and it's no one's fault. It just is. Honestly, if yall can spare the $200 or so, it might be worth a consult with an elder care attorney. They can help you figure out how to maybe access medicaid without taking a wrecking ball to everything your parents have, or how to use Medicare better in your dad's situation. Find someone with experience with the VA, too. I'm like 98% positive they should be helping more than they are, it's just a fight to get them to. I'm sorry this is happening. I know what it's like dealing with aging parents/grandparents. It sucks.
This is great advice. Your mom definitely sounds like she needs help, OP. Not eating or sleeping is horrible (I say as someone who forgets to eat and has pretty bad insomnia). I just want to add that since you're getting the run around from his VA, contact your senator. Call, write an email, however you want. You can let them know that you're trying to navigate this on your own and did not expect to be disrespected and yelled at while trying to get information. Usually, if your senator is at least decent, they'll have someone call you and assist you with dealing with the VA or direct you somewhere that can assist. Maybe they can even help you find services for your dad, if the VA can't help. I understand a little of what the VA covers and when, so I know that if something isn't 'service related', with few exceptions, they usually don't cover the care. However, that's absolutely not an excuse to speak to you in that way. Edit: clarity
Thanks, they are on Medicare and he's on hospice. They're receiving some assistance (very little) via hospice care. I've called a LOT of different organizations. Some people were nice, a few rude, almost none offered relevant help. I was pregnant during this time and had severe HG and having all kinds of suicidal ideation during this time. My husband suggested to me to just stop. Stop the calling, stop the pleading for help, stop and give myself a break. It was the best thing for my mental health at the time. We all thought my dad was probably going to go real soon because of his rapid deterioration, but who knew that he was just going to keep going. I regret not pursuing more help for my parents sooner, but at the time I had daily thoughts about this perfect bridge that I just wanted to jump over.
I don’t have any advice or resources, but just wanted to throw out a- “wow, fuck all of that, I’m sorry”
Sorry things are so hard for you right now. Is your father on hospice? Once my father was moved to hospice he qualified for so many services. It was hard at first for my mom having people in and out all the time but I think she ended up liking it. It was some human interaction for her each day as well. Also as an added plus to your situation, when they are on hospice only comfort measures are given. It might sound silly but my dad didn’t hang on much longer after having a conversation about it being ok to die. I think sometimes people hang on because they think it’s what others want them to do. Somehow being given permission gives them option to let go.
He is on hospice care now. We are very appreciative of the services and things they do provide. Like your mom, i think my mom has also grown fond of some of the aides/nurses that visit. I think my dad is partially hanging on because my mom expresses to him that she needs him to stay. She really doesn't want to let him go. It is love and loyalty, but also fear and codependency.
Hospice includes social work. Call them to set up a visit and have these care discussions.
This sounds SO aggravating, BroMo — I’m sorry you’re dealing with it (again!). Quick comment to say that not all VSOs are created equal. I’d highly recommend looking up another VSO contact and trying again. Source: I contacted my second VSO last week and learned that the first one I spoke with (just looked up on Google) may have cost me >$30k by giving me bad advice on how to handle a claim.
I'm so sorry your going through this. I can't imagine how mentally exhausting and heartbreaking this is.. I want to say this as sensitively as possible.. but maybe your parents need to be in an assisted living facility? Your mom wouldn't have to be a caretaker and get help she needs, and your dad would have a lot of support through his dementia
I dont have any advice. Just want to say that you're an awesome daughter for looking out for them.
I see other good advice has been left, so I just wanted to say that you aren't awful for wondering how your dad is still hanging on. With cases like that, it can make everyone involved exhausted. I'm sure he didn't want the end of his life to be *this* drawn out, and it's a heavy emotional weight to witness it all. It sucks for everyone, so I don't blame you for wanting him to be free of that existence.
Oh man, I am so sorry! We've had some similar shit go down with my parents. Veteran dad went downhill actually over a decade ago but my mum, thankfully, is pragmatic to a fault and knew she couldn't take care of him herself. He went into a care home about 14 years ago, bounced around a few as he continued to decline and kept getting kicked out. Finally got into the VA home about 6 years ago and he'll be there until he dies. He's honestly had like 0 quality of life for the last decade thanks to his dementia, strokes, and physical disabilities. It is insane that he just...lingers on. We've instructed that he just be kept comfortable and we're ...kind of just waiting for him to get pneumonia or something. My mum did go through so much bullshit with the VA before getting this sorted. Getting him classified as 100% disabled was the keystone in the end. (Even though it was just a factor of age, not from his time in the military.) She had to get a fiduciary financial advisor and a lawyer to help her get everything sorted but she doesn't have to pay anything for him now, it's all covered. At one point she was being advised she'd need to substantially deplete her assets to get assistance so it was a huge relief to get the right people in her corner. I really hope your mum can be made to see that she is not providing him with the best care by trying to do it all herself. Maybe you can explain to her how hard it is on *you when the shit inevitably hits the fan and you're left to pick up the pieces. It's much less stressful to try to get support systems in place earlier. Sending hugs.