No Help for the Hard Working

[d885089c]

I find myself, as my mom's caregiver, becoming more stressed and tired. I love having her in my home with me but I will admit that as her health declines it is becoming more difficult. I'm now having to miss work to go to doctor's appointments and I'm afraid it's going to cost me my job. Since she is on Medicare and not Medicaid our options for outside help are almost non-existent. Medicare will not help with diapers or expensive medications. She is currently seeing 6 different specialty doctors and one PCP. I have to go wit her to every appointment. I'm an only child and a single parent of a 13 yr old myself recieving no help from the father so there are no siblings or grandchildren to help out. It all falls on me. And usually the overages in payments come from my pocket. Every community resource we have tried has told us that as a retiree on Medicare she makes too much money to qualify for help with anything. It's ridiculous really. Each speciality doctor costs $50 (that's $300 a month), her PCP is $20, her medications run about $200 a month total, and she's 100% incontinent so her diapers run about $16 a pack at about 8-10 packs a month (that's about $130 a month). Lord help us if anything happens out of the ordinary. To top it all off, my own seizures have decided to go out of whack so now I'm missing work because of my own health issues. I'm tired and I'm stressed and I feel like I don't have any options or places to turn. Should I quit my job and go on welfare so I can take care of my mom, my daughter, and myself? Should I put her in a nursing home which she doesn't want because she was a nurse for 15 yrs and has an extreme phobia of the places now. She raised me as a single mom with no help. I feel like I owe her the same as long as her mind is with her even though her health is getting worse. You know I watched her work for 45 yrs and now in her retirement she gets nothing but a check that goes to medical expenses. I see my friends parents who didn't work a day in their life get all the help in the world on Medicaid. Yeah their monthly check is smaller but I'd take that anyday over the struggle I'm watching my mom go through now. What's the point of working so dang hard all your life if it turns out like this? I don't know. Maybe I'm just tired and stressed. Does anyone else understand?

[GailL1]

@d885089c

Sounds like your mom is on a Medicare Advantage plan as the way she gets her Medicare benefits.  Open enrollment is going on now, (10/15 - 12/07) perhaps you should see if there is a better plan available to her where she lives.

Do you know how to do that ?

Her prescription drug plan is either included in her Medicare Advantage plan

or it is a free standing one - if it is free standing, that can be shopped during this same open enrollment.  If it is included in her MA plan, just make sure the formulary and the cost work when you are doing a plan comparison.

The SHINE organization can help you with this if you need help.

I don't guess she is able to live in an independent senior facility, many are subsidized to a certain extent based on income.

Does your mom have enough money for an assisted living place?  The cost rise with the amount of care she needs.

What about a personal care home?

What about an adult day care for when you are working -'is she ok by herself at home while you are working?

Course then you still have the Dr. Appointments but if it is just for primary care, there are some doc's that come to your home.  You would have to check availability of this service on her insurance plan.  I know there are on the original Medicare program but don't know about Medicare Advantage.

Adult diapers and  incontenence supplies are often available at Food banks but whether she qualifies, I don't know.  What about buying them on Amazon, Costco,etc. for buying in bulk savings?

just a few things off the top of my head.  By the way, did you and your mom ever talk about this before she moved in?  Was there a plan?

[JaneCares]

I looked up your introduction post and took the liberty of finding this for you, Dalia. Give them a call.

[JaneCares]

Describe the help your friends' parents are receiving with medicaid, please. All the help in the world? Some states do have programs that allow for up to 16 hours a day home health aide support. DC is one of them (Not a state but acts like one at times.)  I was a consultant care manager to a family who had mom at home and theoretically 16 hours a day of an aide, but the aides were paid so poorly that the turnover was ridiculous, and the hours were about 12 per day. so the daughter got little sleep every single night. They though she would pass away eventually, but for 7 years and well into her 90s this woman hung on, and had great quality of life, which wore on her daughter and son in law. they hired me to place her in a nursing home, and we did that, and she did okay there, and after another year, finally passed away.

       if your mother is over income, can she pay for some aide help out of pocket? true, medicare doesn't pay for aide care except for quick bathing help and only directly following a hospitalization. Hire one person for 4 hours for 80 bucks and in that 4 hours your mom could be bathed, hair washed, nails clipped, fed at least one meal, and the bathroom scrubbed. 

         you do need to take care of yourself, and your child. before i'd quit my job i'd talk to an eldercare attorney, or at the very least, a social worker at your local area agency for aging, which is free. www.eldercare.gov. type in your zip code. 

         good luck. 

write back?

Jane

[d885089c]

Good Morning!

Yes, you're right. My wording was overdramatic. It's just I find my mom needing things. When I was married to my ex-husband he was put on Medicaid and so were both my in-laws. So many things were free to them: several medications, diapers, equipment for my father-in-law (like a lift), hygiene products, home care, discounts on their rent, and several other things. Now that my own mother is at a point of needing some of those same things all we hear is you have to pay out of pocket. And not $5 either but hundreds of dollars. It's a little frutrating to be honest. My ex family was on Medicaid because they didn't have enough work credits when they either retired or went on disability. My mom however worked for over 40 years as an LVN. So while dramatic it certainly feel that way while we are living it. I did contact the rep in the area from the website you provided so maybe a little good news will come from that. I'll keep you posted on what they say. Thank you for sharing that information.

[JaneCares]

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@d885089c wrote:

Good Morning!

Yes, you're right. My wording was overdramatic. It's just I find my mom needing things. When I was married to my ex-husband he was put on Medicaid and so were both my in-laws. So many things were free to them: several medications, diapers, equipment for my father-in-law (like a lift), hygiene products, home care, discounts on their rent, and several other things. Now that my own mother is at a point of needing some of those same things all we hear is you have to pay out of pocket. And not $5 either but hundreds of dollars. It's a little frutrating to be honest. My ex family was on Medicaid because they didn't have enough work credits when they either retired or went on disability. My mom however worked for over 40 years as an LVN. So while dramatic it certainly feel that way while we are living it. I did contact the rep in the area from the website you provided so maybe a little good news will come from that. I'll keep you posted on what they say. Thank you for sharing that information.

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GailL gives you some great advice.

And i didn't mean to discount your incredible frustration. It is a LOT of work. And to be put in the middle between rich and medicaid is a very tough spot. Long term care policy does not adequately address folks in your mom's position. 

As GailL points out, there are resources for you, and i do hope the agency you contact will, too. You have been patching together everything so far, and i hope that with help you can save some money and patch together stuff that makes more sense for you and her.

There are 'group homes' or 'foster homes' for older folks which are hugely cheaper for people who need care than assisted living places. that's an idea, anyway.

do share how things go if you have time because whatever solutions you find will for sure help other people. 

hang in there!

jane

[GailL1]

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@d885089c wrote:

Good Morning!

Yes, you're right. My wording was overdramatic. It's just I find my mom needing things. When I was married to my ex-husband he was put on Medicaid and so were both my in-laws. So many things were free to them: several medications, diapers, equipment for my father-in-law (like a lift), hygiene products, home care, discounts on their rent, and several other things. Now that my own mother is at a point of needing some of those same things all we hear is you have to pay out of pocket. And not $5 either but hundreds of dollars. It's a little frutrating to be honest. My ex family was on Medicaid because they didn't have enough work credits when they either retired or went on disability. My mom however worked for over 40 years as an LVN. So while dramatic it certainly feel that way while we are living it. I did contact the rep in the area from the website you provided so maybe a little good news will come from that. I'll keep you posted on what they say. Thank you for sharing that information.

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Medicare.gov: Medicaid from the link: Medicaid spend down

Even if your income exceeds Medicaid income levels in your state, you may be eligible under Medicaid spend down rules. Under the "spend down" process, some states allow you to become eligible for Medicaid as "medically needy," even if you have too much income to qualify. This process allows you to "spend down," or subtract, your medical expenses from your income to become eligible for Medicaid.

To be eligible as "medically needy," your measurable resources also have to be under the resource amount allowed in your state. Call your state Medicaid program to see if you qualify and learn how to apply.