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My husband and I are both disabled. We reside in NY State in a fairly rural area. We sold our home to build a disability friendly manufactured home. It should be ready for occupancy in October. My parents are both disabled. They reside in California. My father no longer drives.
Our home is coming with a suite attached with its own entrance for my parents to live in. It will have a small kitchen, living room, bedroom, bathroom, and closet.
My dad and his sister will sell the California property and they will split the money 50/50 (in accordance with the will of my grandparents).
Dad would like to use some of the money to get a storage shed, gutters on the new house (our part and theirs) and suite, a generator, and perhaps a garage, etc. depending on how much money he receives.
1) Dad is worried about losing his benefits by receiving money from the sale of the California property. Is this true? Is there anything that can be done regarding this?
2) How do I approach doctors in NY with trying to get their medications continued without issues? They both have some pain medications, history of compliance and no issues, and years of trial and error to finally find what helps each of them. Having Health Care Proxies, Power of Attorneys, other forms, joint phone calls, virtual calls, etc. isn't going to be a problem.
3) Will my husband and/or I lose our own disability benefits if they live in the suite attached to our new home? Neither of us have any curable conditions. Our health isn't going to change no matter who lives with or near us.
I thank everyone and anyone who is kind enough to take the time to help guide me regarding this. I know there are several parts to this situation.

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I honestly don't know the answers to your questions, but I do believe any change in both your parents and you and your husbands income will definitely affect your disability payments, and will be seen as an overpayment issue that you all will have to pay back to the government.
Perhaps someone knows more about that than I.

But on a side note....why in the world if you and your husband are both disabled would you opt to take your parents in who also are disabled? Who's going to be taking care of who when needed?
To me personally, this sounds like a recipe for disaster. Your intentions may be good, but your judgement may be off.
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RLG1980 Jul 27, 2024
I can't figure out how to fill out my profile.

The house and attached suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply on here.

I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed. My background is medical, mental health, grief, and military social work. I am mobile with braces. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He mobile w/cane, walker, etc., and has chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago. Mom has chronic pain, uses a cane, etc.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both have medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

We do have an amazing support network of family and friends.

I will consult a disability lawyer.
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How old are your parents?
What type of disabilities do they currently have?
Do they have any age-related issues?

You need to think of what it will be like 5 or 10 years down the road, and not "romanticize" what living -- and careing -- for them will be like right now. Right now they sound mostly independent and competent. But eventually this won't be the case.

If one or both of your parents are in wheelchairs, and they develop dementia, they can start forgetting they are disabled and attempted to stand up and walk, and then break their leg or hip. This is a very common problem, it happens all the time.

Or, are they incontinent now but can manage themselves? What happens if they develop cognitive and memory problems and start stripping off their clothes when they soil themselves? This is also a common problem and you can read many posts on this forum about the headaches this creates for their caregivers.

And what if you and your husband become less able to take care of yourselves before your parents (or at the same time)? This is also not unheardof.

Also, if your parents tie up their financial resources in a house, and they need to go into a facility, how will it be paid for? And if you build a "specialty" house it won't sell very fast, or at all.

I realize you're already in the middle of building. But if I were in your shoes I would have had your parents move themselves into a care community with a continuum of care, either in CA or local to you. You should think about doing the same for yourselves when ADLs get more difficult.

You are building in a semi-rural area (I'm assuming that you don't mean suburbs). This means fewer services and fewer options for in-home care help or care facilities.

As for the benefits issues, are you all on SSDI? Other? We can't give best guidance unless you fill out your profile and provide more info here in the thread. You don't even tell us what specific disabilities you all have, which is essential to know.

Please provide more information.
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RLG1980 Jul 27, 2024
I can't figure out how to fill out my profile.

The house and attached suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply on here.

I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed. My background is medical, mental health, grief, and military social work. I am mobile with braces. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He mobile w/cane, walker, etc., and has chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago. Mom has chronic pain, uses a cane, etc.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both have medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult a disability lawyer.
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All 4 of you are disabled . Have you thought about how this will be handled down the road ?

As already said , who will be taking care of you all in this situation as any or all of you decline ?

Are your parents expecting to live with you forever ? Or do they understand that they may need to move some day to a facility for care ?

There is a five year look back should your parents ever need to apply for Medicaid . This means it could be problematic that he’s giving your sister money and wants to spend money on improvements to your property .

I suggest you talk to an eldercare attorney about these potential financial and benefits issues before committing to this .

The plan may need to change .

If your parents move to NY , your parents fill out forms requesting their CA doctors send records to their new doctors .
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RLG1980 Jul 27, 2024
Thank you for the idea of having their doctor send a letter to possible new primary doctors.

The house and attached suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply on here.
I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed. My background is medical, mental health, grief, and military social work. I am mobile with braces. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He mobile w/cane, walker, etc., and has chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago. Mom has chronic pain, uses a cane, etc.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both had medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult a disability lawyer.
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You should consult an elder law attorney in your state as the fine points here make all the difference. You will need said attorney to meet with you and the elders BEFORE such a move and make a care contract for "shared living expenses". Even the wording is crucial here as "rental" is taxable for you and "shared living expenses " are not.

All that said I hope that you fully have discussed and thought out and already made stipulations regarding costs, who helps them travel to appointments, medical care in the area, and the fact that deterioration is a certainty. You do not elaborate on your disabilities, but it is difficult for those who are able bodied to handle elders in the home, let alone those with their own limitations. I surely do wish you the very best of luck, but an attorney will help you think, at least, about all financial and legal options, including POA and your abilities/willingness to do that onerous work.
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RLG1980 Jul 27, 2024
One thing I also forgot to add: The house and attached suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply.
I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed, but it is not a constant thing. My background is medical, mental health, grief, and military social work. I am mobile. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My parents are 10 years apart. My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He is currently still mobile, with chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both had medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult a disability lawyer. I could still use some suggestions with some of the things I mentioned if possible.
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One of the worst stories I've ever heard in such a situation was about a friend of my mom's whose husband died. She received hubby's insurance money, and it was decided that she'd use it to build an apartment for herself onto the existing house of her son, who was pastor of a church. That way grandma would be available onsite to help son and his wife, who both worked, as well as provide babysitting for their kids. Son and wife fell behind on their house payments, and grandma had no idea. They didn't tell her. Eventually the house - the whole house, including her attached granny apartment, was repossessed by the bank. Surprise surprise! for grandma. She lost everything.

I'd be very careful about financial and legal ramifications of combining or adding to any sort of property. Don't assume anything about what belongs to whom, who inherits what, or financial status of the other parties. Never assume that any party is entitled to caregiving by any other party. Don't assume that anyone wants to change your Depends, take you to appointments, or cook for all the rest.

This moving-in-everyone-disabled-cross-country-caper sounds like the makings of a nightmare to me, but maybe that's just me.
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RLG1980 Jul 27, 2024
OMG, that is heartbreaking!!! =(

I forgot to add: The house anattached d suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply.
I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed, but it is not a constant thing. My background is medical, mental health, grief, and military social work. I am mobile. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My parents are 10 years apart. My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He is currently still mobile, with chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both had medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult w/disability lawyer. I could use suggestions w/some of the things I mentioned.
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RLG1980, welcome to the forum. Please take a few minutes and fill out your Profile. That will give us a better idea regarding your situation. Such as are you and hubby in your 20's or 60's? Are your parents in their 50's or 90's? What are your parents medical issues? Are they physical and/or memory?


You mentioned that you and hubby are disabled. Just curious how would you care for two older disabled people? If you needed caregiving help for your parents, would your parents be able to qualify for Medicaid if there isn't enough money saved? If Medicaid is needed for one or both parents in the first five years of your parents moving in, Medicaid may say no as adding on to your house plus paying for extras, benefits you in the long run. Thus, it was a "gift".


As mentioned earlier, best to speak with an Elder Law Attorney as to what would be the best approach. Also, for your parents to update their Wills and other legal documents in case their previous legal documents aren't accepted in New York.


Are your parents familiar with your area? Moving can affect dementia, even early stages. Saying good-bye to old friends in California. New doctors/dentist would be needed, and that's not easy. New barber shop/beauty salon, may have to try out several. New ID cards. Getting familiar with the area. Even watching the TV local news they will see unfamiliar faces. Transferring all their mail.


My cousin lives in a semi-rural area, and when her hubby developed cancer, she said she had to drive 2 hours to and from for him to get treatment. Hopefully you aren't that far out from a large city.
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RLG1980 Jul 27, 2024
One thing I also forgot to add: The house and atrached suite is what my husband and I ordered. It's breaking ground this week. So, no add-ons to an already existing home.

It took me a while to figure out how to reply.
I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed, but it is not a constant thing. My background is medical, mental health, grief, and military social work. I am mobile. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My parents are 10 years apart. My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He is currently still mobile, with chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both had medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult a disability lawyer. I could still use some suggestions with some of the things I mentioned if possible.
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It's sometimes very difficult to get medical care in a new community. Where I live, and you wouldn't think this could possibly be true, it can take 6 months or even more to get the initial visit with a doctor, and that's just the meeting where they take the patient's measure and the patient takes their measure, and only after that will they make an appointment for, say, a regular physical. Plus doctors are leaving in droves. I've had 3 primaries in the past years here, and I am about to have an initial visit with a new PCP this week because my latest is leaving in a few days.
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waytomisery Jul 27, 2024
Good point !
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Sorry to be negative, but this grandiose plan sounds like a pending disaster to me.

It makes no sense for a disabled couple (living on disability benefits) to bring their also disabled Elder parents into their home and combine households, as well as co-mingle funds doing it.

Both couples need to consult an Elder lawyer before going any further. You are in no financial or physical position to be caregiving and/or housing your disabled parents whatsoever. Moving Elder parents across the country will not me an easy adjustment and cause them to significantly decline. The weather alone will be a huge problem. If they don't already live nearby (and have for many years), both couples are not totally familiar with personalities, quirks and different temperments. Especially living in the same home!

Aging Elders will soon require significant care, especially after such a drastic change. Apparently you will be expected to be a 24/7 caregiver, when already disabled yourself? The overall stress factor alone is a ticking time bomb.
Listen to the very good advice given.
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RLG1980 Jul 27, 2024
It took me a while to figure out how to reply.
I am 43 and so is my husband. I have Ehlers-Danlos Syndrome and some other annoying conditions. I may wear braces on areas of my body as needed, but it is not a constant thing. My background is medical, mental health, grief, and military social work. I am mobile. I pace myself. We have a lot of family out here, so we wouldn't be alone. My husband is also 43 and a disabled military veteran (PTSD, etc.).

My parents are 10 years apart. My father is 75, a brittle diabetic, and I am 99% positive he has a lot of the same conditions that I do. He is does not drive anymore. He is currently still mobile, with chronic pain.

My mother is 65 and was injured in a shoulder and a leg on the job many years ago.

I was not on disability until about 4 years ago. My husband and I managed our money well and ultimately decided to sell our 3 level Adirondack home to invest in building this manufactured home and buy land. We were also able to afford to have what is often known as a "mother-in-law suite."

Any funds my father receives after selling the CA property is not going to us. It's for him and his sister. He would just like to contribute something, such as buying a tool shed, a generator, and maybe help put gutters on the home and suite.

I can completely understand why someone may have read my post and assumed "disabled" means incapable of doing much at all.

Every remaining family member has left CA. One more reason to bring them here where my husband and I are in NY. My father has been found on the floor with diabetic complications too many times. They are about a 45+ minute drive from the nearest hospital. There is no cell service or high-speed internet where they live. Here, I can literally be a few seconds away through a doorway to help until paramedics arrive and the hospital is about 10 minutes away.

I can also get LifeAlert for my parents setup, get them into the specialists I have already, etc.

They both had medicaid and medicare.
My husband is a disabled veteran.
I have medicaid and medicare.

Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed.

If there's a bad day and I have a flare-up of my own, I just pick up the phone and someone else can come over, pick up meds, groceries, help anyone get to appointments, etc.

I do not take controlled pain medications, however, my parents do. It's taken then years of trial and error to get where they are now. I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.

There is a POA, HCP, and will. No problems there.

We have a lot of family here. I apologize if my initial post was confusing and lacking enough detail. I am seeking help in how I might approach a primary doctor to just continue their medications. My dad is aware he may lose his insurance due to getting a lump sum from selling the CA property. I had "heard" that since you are permitted to have at least 1 residence, that this sum could possibly not be used against him if he spends it in a certain time frame.

Also, our new home and suite are single level, outside ramps, no lip showers for walker or wheelchair access, widened doors, lever handles instead of doorknobs. Everything is paid for by the sale of our own previous home. Dad's just grateful and I think a little pride is there where he'd like to "do something." I hope that makes sense.

I will consult a disability lawyer. I could still use some suggestions with some of the things I mentioned if possible.

RLG1980
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As for how to get your parents medicine to make sure they dont run out.

I would first make sure they have a good supply of meds, see if you can get an extra month supply from there doctor there , if they will do that for you.

And before they move find a GP first that will accept new patients, and have there records transfered up.

I think that's how it works. But not positive
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To fill out your profile ,
touch the big R in the blue circle , then touch settings , then you can fill out the caring for section, and the about me section .
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First, I checked Ehlers Danlos syndrome, as I’ve heard it mentioned several times in medical appointments. I have Marfan, with particularly awkward scoliosis, and you have much worse problems. You have my very sincere sympathy.

Regarding the medications, are scripts transferable between States in the USA? If they are, I’d suggest that your parents get scripts for as far in advance as possible, then go to see a doctor for replacements when they arrive with you, with the scripts to show. That should avoid them having to explain everything and deal with a different doctor’s ideas about what they might need (in the new doctor’s opinion).

Regarding the dealings with the house sale proceeds, I can’t help, and I think this is probably complicated enough to check with a lawyer who specialises in Medicaid. Good Luck!
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waytomisery Jul 27, 2024
Different states have different laws about out of state scripts. I don’t know about NY RX laws .
Ask a pharmacist in NY .
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I'm repeating this in case my answer was too far down the answers, just in case it helps:

Hi! I'm not 'always in pain', but it certainly visits me almost every day. Yes, "focusing on helping others does help by taking my mind elsewhere". For me, spending time on this site is a big part of that. Me, my computer, and my comfortable office chair - the easiest way to stay in the wide world from where I am, which is Alice Springs in the middle of Australia. Please feel free to stay with us just as long as you like!
.....
I'd also say that you are aged 43, I have just turned 77. It gets worse as you age. Prepare for it! Lots of love, Margaret!
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BlueEyedGirl94 Jul 29, 2024
I will also add -that in caregiving for my FIL - we started out as 4 able-bodied 40/50 somethings. And when it was all said and done - ALL of us had at least one (note that at least) physical pain/injury as a direct RESULT of caregiving. Most of these injuries required surgical intervention AND never really fully returned to pre-caregiving state.

Even if you don't start off in pain or injured - there is a good chance that you will be after caregiving.
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This plan sounds great - on paper. Family taking care of family -working together. Multi-generational home. That might sound like a nightmare to some - and I get that too. But my family has similar ideas around elder care. To a point.

That point being - the "what-ifs". You have to be realistic in looking at the big picture. You can't just get stuck in the "we'll figure it out if we have to".

Both you and your DH are young. But you also both have enough going on that you are on disability. That's not just something that gets handed out like candy. My assumption is that you and your DH have already made a number of adjustments in how the two of you live your lives in order to accommodate each other and balance your home life.

Anytime that you add another person to a dynamic that is already working for you -there are going to be adjustments. But you are adding two aging, disabled parents to a household with two disabled occupants. While the one level, split suite set up sounds ideal -you have to consider everything - not just what looks good.

You lean heavily on family around you stepping in and covering any gaps. And the family history of keeping elderly family members home. However, you may find that other family members may not have the time, energy or bandwidth to step in all the time. And you will become the primary caregivers with maybe potential assistance in an emergency.

A high % of caregivers unfortunately pre-decease the person(s) they are taking care of. There is a good chance given that you might be considered the "healthiest" among you that you will be the one doing more work. What happens if you need help? What happens if you or your DH has to go to the hospital for an extended period? What happens if you or your DH AND one of your parents end up in the hospital?

There are so many variables to consider.

As to whether your benefits or theirs will be impacted - that's something you may want to consult with an attorney about.

You say that both you and your DH have incurable conditions. So they aren't going to get better, but they could potentially get worse. Your parents are the same. You have to consider things like emergencies, weather, fire, COVID or flu, one of your parents falls, both of your parents fall. You get the idea.

Before you do this - consider all angles that you can possible think of.
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Good and wise advice is being given to you. There is much about aging that simply cannot be planned for.

Many a loving and well-meaning adult child or family planned to care for one or both parents, only to come up to the hard reality that caring for a very physically and cognitively needy adult is overwhelming. It also can become a financial crisis since paying for in-home is expensive and can be hard to find in less populated areas.

I'm glad you have a historically "helpful" family... however, no one should ever be "assumed" into caregiving. Remember: they have their own aging parents to care for at some point.

If you are in pain every day, and assuming your condition limits what you can do physically, then how will you be helping your parents use the toilet when they no longer can -- or won't? Helping to change even a cooperative incontinent parent (using disposable briefs) can require bending and stooping. How will you ever get them into a car? And what will happen if one or both become bedbound? Who will be lifting or turning them?

I'm hoping that your parents have very robust financial reserves so that if their care becomes more than you can handle you will at least have the option of hiring outside help. You may find that even willing and able family will eventually get overwhelmed by orbiting around you 4.

No one likes a good plan like me, so I'm with you on that. BUT please heed the advice given here. No one can ever imagine how stressful and exhausting caregiving can become -- that's how those well-meaning adult children got themselves into a pickle in the first place. Plan for the worst, hope for the best. That's the most anyone can do.
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You will need a lawyers advice. Your parents’ Medicaid will not go across state lines and they will have to requalify in the new state. Save the questions for the lawyer as timing of house proceeds and and spending is also key
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How can you, both disabled, bring in older parents? Recipe for disaster. If you were trying to do it for financial reasons, still tough, but in your case it sounds like your father will have the means for another arrangement.
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MargaretMcKen Jul 29, 2024
After learning what OP is coping with at age 43, I think she is well able to think it through. Of course the 'warnings' may be useful in any case.
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You are dealing with a lot. I would find it overwhelming, and neither my husband nor I are disabled. I would not attempt to do what you are planning. I vowed not to consider living with my parents no matter what and am at peace with that. But it sounds like you have thought through it in detail and seem pretty well prepared and determined, and you have related experience. It will still be tough.

Concerning one of your questions “I would like to keep their medications as is upon moving. I am just unsure, despite my professional background, how to approach a potential primary doctor.”

When I moved my parents about 850 miles to my town (NOT in the same house) in spring 2022, my dad was on several meds including Seroquel which was essential to curb his dangerous dementia behaviors. I made sure he had a month or two worth of his meds on hand, all the prescriptions written out, and letters from his dr documenting his diagnosis. I found a local geriatrician who became dad’s primary care dr. I had zero problems getting his meds continued. Thank goodness, because there was no shortage of other problems! He was also on Medicare.

Maybe if you call some likely drs ahead of time, you will get a sense of whether this is possible in your area too.

You might also look for “aging care coordinators” or similar. There is one in my area familiar with all kinds of services. The geriatric drs, traveling nurses, aide services and freelance aides, all the continuum of care places, SNF, Medicare lawyers, estate planning services, etc. They will do home inspections to ensure you have optimized for safety, etc. Very expensive, but can save a lot of time and give peace of mind.
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I forgot to ad also that in general, most insurance plans will not now allow a prescription for more than 30 days' worth of an opioid. Each 30 day requires a new prescription--no refills regardless of what the doctor writes. Thus, your father will not be able to bring more than about 5 weeks' worth of an opioid with him: his recently renewed prescription, and the 7 days or so that remain at the time he gets a new prescription.

This is not just my experience, I do not have Hypermobile Ehlers-Danlos Syndrome (hEDS), but I have Hypermobility Spectrum Disorder and am in an excellent forum for people with hEDS. The problems that some forum members have had in obtaining pain medication--and often these members have more serious pain than I do--are very disheartening.

The one other thing I've thought of regarding the OP's father is that if he is not eligible for hospice--it sounds as if he i snot--he might be eligible for palliative care. Some palliative care programs will allow opioid prescriptions. If he wants to try to go this route, he should set it up before he decides to move!
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Our situation, while not exactly the same was similar. We moved MIL & FIL in 4 years ago with a very similar set up in a house. We, however, have zero support or family here. My husbands' sister lived up the street but stopped speaking to us right after we moved to be close to her and then shunned her parents (MIL/FIL) a year after they moved in. (She's got her own mental and physical issues) So we are essentially alone but it has still been ideal - don't get discouraged by others on this post even though they are well meaning. I am much older than you and have my own issues but we are making it work very well. Mom and Dad don't currently have medicaid just medicare. They were able to sell their home and deposit their assets without it effecting them, but medicaid is a different animal and definitely seek professional help to navigate this area of your arrangement.

Your father may not have the funds he thinks he does when this is through. Too bad he didn't quit claim deed his ownership rights directly to you and your husband prior to the sale, or to his sister in order to take his share and gift it directly to you where you could hold it in a separate account for them under your/husbands name and manage it for them. But a lawyer could advise you better than I could.

Can I suggest you look for a geriatric doctor that specializes in elder care versus your primary care doctor. We initially also had my mother living with us before she passed and I found a geriatric doctor to be more understanding and knowledgeable about medicines typically needed for pain management at an older age. Since it is typical as parents age for them to decide to "miss" scheduled appointments if they get up not feeling like leaving the house or are too tired... its less stressful for you not to feel pressure for them to go because its "your" dr. [I hope you understand what I am trying to say]. At first, I used to get very upset when my mom would refuse to go and we had to cancel last minute because I knew there was someone out there that probably really needed that appointment. I feel like geriatric doctors are more used to this and their offices "go with the flow" a little better and it eased my own stress. Just my opinion.

I wish you well. There's no roadmap for this so you can't "plan" for every contingency as some suggest, you can only do your best with love, compassion and kindness.
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freqflyer Aug 1, 2024
Kat1313, it is never a good idea to quit claim title of a parents house over to a grown child. There are heavy income tax consequences whenever that is done and later the house is sold. And more so if the grown child doesn't move into said house (it becomes an "investment property" and taxes are heavier). An Elder Law Attorney or CPA can explain better the tax issues.
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Don‘t do this…
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Especially since you've mentioned that both parents have medicaid in California, please make sure to consult an elder care/estate attorney! Personally, I'd consult one in California before the house sale, AND one in your state. There are definite strict laws regarding home sale proceeds and medi-cal or medicaid eligibility. There are also a few ways of transferring the house to preserve medicaid benefits. If they lose eligibility for medicaid, and end up requiring nursing home care, that would get costly very quick. There may be a way that they keep the house with a stated intent to return. This really requires consulting with good lawyers.
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RLG1980, you wrote:

"Everyone on my side of the family has always taken care of aging family members. We don't have them go into facilities, we just work together. It has been that was since I can remember. I grew up with elderly family members being looked aftr by my parents and nearby family members as needed."

Yes, that is the way it has always been . . . until people started living longer and needing more care than can be provided at home. Since I left my job in 2007, I have been caregiving in one way or another (daughter had twins when she still had two under 3 years old, then mil, then my parents long distance, and mixed with all of that is my husband who has been disabled since 1995, and diagnosed with dementia in 2017).

Here's the thing -- once my husband passes, I will not place the expectations on my children that were placed on me. I have plans to move into a Continuing Care Retirement Community where I will be safe and they will not have to worry about me. I can start out in a cottage or apartment and then move to levels of care as needed without ever making my own children stop living their lives.

Just because families have done this for years doesn't mean that it is the right thing to do in this generation. Please consider exploring others options.
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TouchMatters Aug 1, 2024
Well ... that's great for you. Unfortunately, not everyone is in the same financial or family situation as YOU are. In other words, how would you 'rely' on a 'family member to take care of you (or another) -
* if they had an addiction to alcohol, drugs, etc.?
* Were abusive to another family member or spouse?
* Irresponsible / unable to handle financial, legal, and/or medical needs of a loved one (perhaps YOU) in need?
* There are as many scenarios as families wherein placement would be the best option when unable to RELY on family - as you are so fortunate to be able to do.

Please consider your responses to questions presented here - if you cannot be helpful - and see (and feel, show compassion) beyond your own nuclear family unit and personal experience ... if you are unable to offer some compassionate critical thinking, it would be 'more helpful' to people here if you not to respond at all. It must be nice to live in a glass tower. On second thought, no thank you. I would not want to live in your world.
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Being that you live semi rurally, you can’t depend on the senior bus or adult day care. Care providers will be rarer. And the new doctor likely won’t be giving them a 30 pill bottle of hydrocodone because they had it before.
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I'd suggest that you do NOW:

1) Contact an attorney here - who is licensed in New York - or works with attorney / firm in New York. An attorney who is experienced with elder disability issues, too. Don't 'just' rely on responses here although they certainly could be helpful.

2) Ask your parent(s) health care provider about how to change / transfer prescription needs to another state. This should be a common need. You also might need to ask Medicaid, Medicare - whatever benefits they get now - call them. If 'snags' slow the prescription availability, see if you can get a few months supply to deal with whatever possible holdups.
* Do you know what / which hospital you'll be working with?
* Do you have an MD in New York yet for parents?

3) I am concerned with 'all of you' living in a semi-rural area and being older / disabled. How are you going to handle medical emergencies? Is there a hospital close by? This would be a huge concern to me although I trust you have considered this - based on all the thought / work you've put into the building / renovations and additional work.

Gena / Touch Matters
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RLG1980 Aug 1, 2024
What's crazy is that "my rural" is actually closer to a hospital and store. About 10 minutes. Where they are now currently has a fire going on not far away, the nearest anything aside from a single stop sign is a 60 mile roundtrip to even get groceries, medications, and even further to see their primary.
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Your parents will owe the irs for anything they gift you beyond 16000 a year. You can get around this by getting a “gift deed” that would give them back the funds they paid toward home improvements after the house is sold.
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RLG1980, thanks for providing extra clarifying info in your response to Kat1313.

Regarding getting the prescription meds for them, I didn't see what exactly they are taking but I don't think "timidity" has anything to do with their new doctor's decision to prescribe dosages or quantities -- they usually have to follow pre-determined rules. My primary doc (an internist) retired last spring. I recently had a bout of vertigo and wanted more Zofran (a prescription anti-emitic). Turns out since I hadn't technically had a first exam by my new primary (who practiced out of a different location but same clinic network) she could not prescribe it until this happened. No matter what. No exceptions. She couldn't even order PT (for the Epley manuever) even though I'd been going to PT for that several times over the years.

I would have printouts of your parents' medication history and accompanying notes to easily show the new doc that they've been recently doing well on their current regimen. Makes less work for the doc and speeds things up -- hopefully. But be prepared for the possiblity that they have to be seen by new doc first, which I think is almost certain.
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RLG1980 Aug 1, 2024
It's crazy you mentioned the medication history, because I had them both get a 6 month print out from their pharmacy. It just arrived in the mail to me yesterday! It looks Vicodin and Ambien are the biggest hurdles.
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I am curious... as you do not say is anyone of the 4 of you immobile? Does the disabilities keep you from being able to care for your parents.?I commend your love for them but I see this as a hard road for all of you.Will there be funds for help in the home if needed? Can you transfer the medication to Amazon pill pack before they arrive? Prayers for all of you
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RLG1980 Aug 1, 2024
First of all, how in the absolute crud muffins did I not know about this Amazon prescription thing? I met my husband on the internet over 20 years ago and assumed I had already found everything the internet had to offer. lol.

To answer your question, all four of us are mobile. Dad and I have medical conditions that fall into the category of "dynamic disabilities." It's bittersweet. Literally one day I may need every brace I own and a cane, later that same day I may need few or none of my "tools." Dad has these conditions, I am 99.9% positive. I was just the 1st in our family to get diagnosed with types of Dysautonomia... then it sort of opened the flood gates for other family members to get diagnosed. Finally all our symptoms made sense.

The situation with Dad is that he is a brittle diabetic. I have always been able to get him through his low sugar drops. We're talking either childlike Dad or moody doesn't know who you are low sugar Dad. For some reason, he responds to his sister and responds to me. For some reason, moody low sugar Dad doesn't recognize Mom the same way.

So, moving them both here will mean life alert, the Dexcom 7 (I think that's what it is called) to alert for sugar levels, cell phone service, highspeed internet, hospital nearby, and getting him into my plethora of specialtists I already have to help him with the conditions I am sure we share.

But, aside from low sugar issues, he's mobile with a cane or if needed a walker. I look at Dad and I see my potential future. My husband and I are having this new home, including their suite, built to accommodate future rolator or wheelchair use: wider entrances and interior doorways, no carpet, lever handles instead of doorknobs, tall toilets, grab bars by toilets and in showers, no lip shower access, handles that our hands can slide through to pull cabinets open, etc. I was diagnosed at 38 and am 43. I was the first in the family to get a name to the historically speaking "symptoms" that's been in the family tree.

Sorry, I know that was a longer answer than anticipated! We're a bunch of storytellers in my family. It's always been that way on my father's side. lol. I'm also the only child my parents have. My husband has adoptive family siblings, birth family siblings, step siblings, etc. So his side definitely has adult siblings to help look after his mom, step dad, dad, and stepmom. And he has already had conversations with their parents plans for future care, etc.

Decisions were definitely thought about for almost 2 years before we ever put our previous home up for sale. I'm excited for the day to no longer be across the country from my parents. I know it won't be easy. As an example of how amazing this community is though, my hair dresser airs out her salon to accommodate my immune condition before I arrive, a member of my local online support group provided a free special massage treatment for me after my first big travel since being diagnosed, I could go on and on. Even friends, family, neighbors, professionals in my network do their best to understand my crazy conditions. My dentist taught his staff about Ehlers-Danlos Syndrome without my asking! We even came up with hand signals during dental work to indicate if numbing is wearing off, another for if I need to stop so I can pop a joint back into place, etc. I truly am blessed and can't wait to bring my parents into that support network.

But again! How did I not know about this whole repackaged Amazon thing?! I could use that for myself, actually. lol. Thank you so much for sharing!!
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When I transferred to Amazon pill pack it was easy I just asked my parents doctor to send the prescriptions to them ..The pills come ready to go in a box with daily tear off packages.
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Prayers sent.
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I'm replying to a later post you sent in reply to someone else. I know how careful you have been in planning. I see now that your father has Vicodin prescribed. It's a heavy-duty narcotic and has the same issues I brought up with Percocet. It may be impossible for him to get a prescription for it in NY, which I believe--but I didn't do any current checking--is a state with very strict regulations regarding controlled substances. Also, wherever your father resides, he will only be able to get a month's prescription--with no renewals--for any narcotic. A new prescription will be required every time, which usually means you must have a good relationship with the doctor's office staff and the doctor! These restrictions came about following new FDA guidelines in 2017. There recently has been a slight softening of these guidelines--not much. Again, I urge you to consult with some local physicians who treat pain or the other conditions your father has that result in pain to learn what their policies are on prescribing narcotics.

Again, as a personal example, when my rheumatologist, who had been prescribing Tramadol (in the least controlled schedule of narcotics) for me monthly, told me when he retired in 2019 that I would probably not be able to find another doctor in the St. Louis area who would prescribe Tramadol at all. In the end, he was able to persuade someone who had done a fellowship with him to prescribe monthly tramadol for me, against the no-narcotics policy of her office group. Vicodin would not have been considered unless I were an official hospice--or possibly palliative care--patient.

Regarding the Amazon packs, your parents are probably in a Medicare prescription plan, which means the lowest costs are usually from in-network pharmacies. I have not had an Amazon option yet in my Medicare plan, so they also may not be able to get the Amazon pill packs. There are some other pharmacies with this option that I haven't investigated regarding in-network status: pill packs would not be a good option for me.

Please let us know how your grandfather does regarding his narcotics prescriptions. I don't think Ambien will present the same problems, but I haven't done any checking. Best wishes!

I hate to be the voice of gloom and doom here, but I am being unhappily realistic. There are members of my online EDS support group whose productive lives have been wrecked because of these narcotics prescription restrictions. It's not an issue of whether people are accommodating; it's the possible legal and financial ramifications for a physician who does not follow the guidelines in prescribing narcotics.
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Anxietynacy Aug 3, 2024
I'm in NY and you are absolutely right.
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