Sometimes/ most of the time- I really hate being a caregiver

[Anonymous]

From your description, is it possible that relative could do more than they are already doing? It sounds like they are cognitively ok? Just wondering if relative could live, for example, in their own studio apartment where they wouldn’t have to walk far and have meal delivery that’s easy to heat up or put laundry in a stacked unit that’s just a few feet away?

It sounds in some ways that the relative’s immunocompromised status and walking issues combined with your 2 story house require more care to be provided that the person might otherwise need.

[Anonymous]

OP - Your clarification of the health status of DH's relative was enlightening. I do think it would be in the best interest of this person to:

- Medicaid Eligibility : The fact is that at some point your relative will likely qualified in their decline for skilled nursing care. to be able to qualify for such care, your relative will need to be able to qualify for Medicaid in terms of resources.' I would contact a lawyer who has experience in disabilities to get an initial consult on how to proceed in getting one qualified for Medicaid. So I would contact the local Arc to get some referrals as the lawyer may need an expertise beyond just elder law.

- Future Decision Making Since the relative seems to be of sound mind, it is also important that in terms of the person's protection that you help her as by Zoom with her lawyer, as needed, or working with you to set up a Power of Attorney, Health Care Directive - with as specific as possible notations on the level of future care desired. for your relative as her decline progresses in the future. Since her parent(s) are still in the legal picture, your DH may want to get specific information to be sure he would have the decision-making to follow through on her wishes.

-In-Home Care/Quality of Life Check online to see if your state has an Elderly and Disabled Waiver or Consumer Directed Waiver that would provide someone in need of direct personal support in-home services that could reduce the direct care daily. Such a program would be listed under the State's Medicaid Waiver. The caregiver would also be able to do activities in the home with the person to give her a more varied daily life... In Virginia it is the CPlus Waiver. For your family's part, there would be so many hours of respite available for use each year.

- Health Care Services Your relative does or will qualify for Medicare within 24 months of starting to receive the SSDI based on the parent's work record. There is no reason that your relative can't be getting health care services as a "Dual Eligible" person meaning Medicare is the primary insurance and Medicaid is the secondary insurance (equivalent of a Medicare Supplement). Again, Medicaid will cover in-home services and improve the quality of her life NOW and be there to fund the transition to more direct health care services as need in the FUTURE.


-Financial Notes As I noted before, it is important that you make a simple budget for the person to be able to show how you have helped the relative manage their SSDI funds because even for one receiving SSDI benefits, the federal government can request a review.
As noted in another post, a simple ABLE Account could be opened for the individual's benefit to deposit funds which are unspent for care one month for future wishes/needs such as durable medical equipment which Medicare does not cover to keep the monthly total in her Benefits bank account under $2,000.

Having an adult daughter with a disability residing with us, these are points of information that I have had to become familiar along this pathway. In her case, there is the added complexity of her working part-time and receiving SSDI. She does have a Case Manager to help due to a Developmental Disability. In your case a local Center for Independent Living or in the DC area the Easter Seal office with adult day services might have resources of information for you on care for your relative. On decision-making, we are her full legal guardians and have her two sisters as alternative guardians.

[Anonymous]

How is the relative impoverished but still ordering such an excessive amount of online items?

[Anonymous]

Anonymous wrote:
OP - Your clarification of the health status of DH's relative was enlightening. I do think it would be in the best interest of this person to:

- Medicaid Eligibility : The fact is that at some point your relative will likely qualified in their decline for skilled nursing care. to be able to qualify for such care, your relative will need to be able to qualify for Medicaid in terms of resources.' I would contact a lawyer who has experience in disabilities to get an initial consult on how to proceed in getting one qualified for Medicaid. So I would contact the local Arc to get some referrals as the lawyer may need an expertise beyond just elder law.

- Future Decision Making Since the relative seems to be of sound mind, it is also important that in terms of the person's protection that you help her as by Zoom with her lawyer, as needed, or working with you to set up a Power of Attorney, Health Care Directive - with as specific as possible notations on the level of future care desired. for your relative as her decline progresses in the future. Since her parent(s) are still in the legal picture, your DH may want to get specific information to be sure he would have the decision-making to follow through on her wishes.

-In-Home Care/Quality of Life Check online to see if your state has an Elderly and Disabled Waiver or Consumer Directed Waiver that would provide someone in need of direct personal support in-home services that could reduce the direct care daily. Such a program would be listed under the State's Medicaid Waiver. The caregiver would also be able to do activities in the home with the person to give her a more varied daily life... In Virginia it is the CPlus Waiver. For your family's part, there would be so many hours of respite available for use each year.

- Health Care Services Your relative does or will qualify for Medicare within 24 months of starting to receive the SSDI based on the parent's work record. There is no reason that your relative can't be getting health care services as a "Dual Eligible" person meaning Medicare is the primary insurance and Medicaid is the secondary insurance (equivalent of a Medicare Supplement). Again, Medicaid will cover in-home services and improve the quality of her life NOW and be there to fund the transition to more direct health care services as need in the FUTURE.


-Financial Notes As I noted before, it is important that you make a simple budget for the person to be able to show how you have helped the relative manage their SSDI funds because even for one receiving SSDI benefits, the federal government can request a review.
As noted in another post, a simple ABLE Account could be opened for the individual's benefit to deposit funds which are unspent for care one month for future wishes/needs such as durable medical equipment which Medicare does not cover to keep the monthly total in her Benefits bank account under $2,000.

Having an adult daughter with a disability residing with us, these are points of information that I have had to become familiar along this pathway. In her case, there is the added complexity of her working part-time and receiving SSDI. She does have a Case Manager to help due to a Developmental Disability. In your case a local Center for Independent Living or in the DC area the Easter Seal office with adult day services might have resources of information for you on care for your relative. On decision-making, we are her full legal guardians and have her two sisters as alternative guardians.

NP - thanks! Copying and saving this for when needed.

[Anonymous]

Op, how are things going? Any update?

[Anonymous]

Anonymous wrote:

Anonymous wrote:
OP - Your clarification of the health status of DH's relative was enlightening. I do think it would be in the best interest of this person to:

- Medicaid Eligibility : The fact is that at some point your relative will likely qualified in their decline for skilled nursing care. to be able to qualify for such care, your relative will need to be able to qualify for Medicaid in terms of resources.' I would contact a lawyer who has experience in disabilities to get an initial consult on how to proceed in getting one qualified for Medicaid. So I would contact the local Arc to get some referrals as the lawyer may need an expertise beyond just elder law.

- Future Decision Making Since the relative seems to be of sound mind, it is also important that in terms of the person's protection that you help her as by Zoom with her lawyer, as needed, or working with you to set up a Power of Attorney, Health Care Directive - with as specific as possible notations on the level of future care desired. for your relative as her decline progresses in the future. Since her parent(s) are still in the legal picture, your DH may want to get specific information to be sure he would have the decision-making to follow through on her wishes.

-In-Home Care/Quality of Life Check online to see if your state has an Elderly and Disabled Waiver or Consumer Directed Waiver that would provide someone in need of direct personal support in-home services that could reduce the direct care daily. Such a program would be listed under the State's Medicaid Waiver. The caregiver would also be able to do activities in the home with the person to give her a more varied daily life... In Virginia it is the CPlus Waiver. For your family's part, there would be so many hours of respite available for use each year.

- Health Care Services Your relative does or will qualify for Medicare within 24 months of starting to receive the SSDI based on the parent's work record. There is no reason that your relative can't be getting health care services as a "Dual Eligible" person meaning Medicare is the primary insurance and Medicaid is the secondary insurance (equivalent of a Medicare Supplement). Again, Medicaid will cover in-home services and improve the quality of her life NOW and be there to fund the transition to more direct health care services as need in the FUTURE.


-Financial Notes As I noted before, it is important that you make a simple budget for the person to be able to show how you have helped the relative manage their SSDI funds because even for one receiving SSDI benefits, the federal government can request a review.
As noted in another post, a simple ABLE Account could be opened for the individual's benefit to deposit funds which are unspent for care one month for future wishes/needs such as durable medical equipment which Medicare does not cover to keep the monthly total in her Benefits bank account under $2,000.

Having an adult daughter with a disability residing with us, these are points of information that I have had to become familiar along this pathway. In her case, there is the added complexity of her working part-time and receiving SSDI. She does have a Case Manager to help due to a Developmental Disability. In your case a local Center for Independent Living or in the DC area the Easter Seal office with adult day services might have resources of information for you on care for your relative. On decision-making, we are her full legal guardians and have her two sisters as alternative guardians.

NP - thanks! Copying and saving this for when needed.

Yes, this is so so helpful. Thanks to the PP who took the time to share this expertise and insight.

[Anonymous]

Anonymous wrote:You need to move your relative out of your home. They clearly have income and likely qualify for Medicaid and other disability payments. Perhaps your community has a social worker you can contact to find out more.

You are a saint and the assistance you have given so far is noble. But I agree with the quoted PP. You need a break.

[Anonymous]

Anonymous wrote:Op, how are things going? Any update?

oh thanks- I hadn't checked this forum in a while. I'm the OP. Things have been a little better- I posted at a pretty low point when my spouse was sick, and so all caregiving was falling on me- Spouse got better and actually shoulders a pretty substantial amount of this burden.
I've also gotten better at saying 'screw it I'm not doing it' to some things- honestly this generally just makes it harder for spouse- but is kind of empowering for me. (this is mostly related to things around laundry and trash).
My kids are also generally helpful. Its just when anyone is the slightest bit sick, we plunge into this kind of awful world. We have been healthy for the last several weeks so that helps a lot.
I do really appreciate the poster who took the time to type out all the financial stuff, that was very useful.