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Hello - I am desperately looking for some advice. My mom has had cancer for many years, and my sister and I have always promised to keep her at home - she has always said she wants to die at home. Her cancer started as breast cancer and then came back on the bones, liver, and brain. The brain radiation has caused all sorts of awful side effects, including these seizures and TIA's - which make her act crazy and confused. Well a few days ago, she had one that she can't pull out of. Since she's mentally incapacitated but not physically ready for hospice, the hospital says she has to go to a nursing home. We've been trying to find one with an open bed (of course all the best ones are full), and as soon as we do they will move her. I am beside myself with grief. It was NEVER supposed to go this way. The Dr.'s even said we'd never have to worry about a nursing home because cancer patients usually just go on hospice when they can't tolerate treatment anymore. Worse yet, the social worker is telling us that her medicare plan will only cover hospice OR a nursing home - one or the other. Since she needs a home right now, that means no hospice.

Of course we can't pay for 24-hour care at home all by ourselves, but I have to get her out of there. The depression will kill her. Does anyone know where I can even begin to search for options? Is there any way at all to get medicare to cover ANY of it? Or is there any type of hospice that would provide around the clock care at home??? It's very hard for me to figure this all out since I live in Colorado and my mom is in Pennsylvania with my sister. I will be flying out there as soon as I can, but if there are people I should meet with, I want to have it arranged before I get there...

Thanks in advance for any help you can suggest!!!
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Hi, COscrapper.

Okay, I'm going to restate what you said to make sure I'm clear. Your mom is in a hospital on a nh waiting list. She doesn't want to go to a nh (which is understandable), but she's not eligible for hospice yet. You're concerned about this, but also expense. Did I get that right?

My experience with my mom has been that after a 3 day hospital stay or longer, she can go to a nh (short-term) for rehab. Medicare will pay I think 100% the first 20 days. Then it drops to 80% for up to 100 days. Insurance or family has to pay the other 20%. So money-wise, if she does get placed in a nh, you have some time.

Most nh's have a separate wing for the short-term rehab patients. Depending on her mental state, you might be able to tell her that she is in a special hospital so she can recover from this last episode, and to give you and sis some time to arrange for the proper care at home.

If it is your intent to not permanently place her at a nh, you should be very direct and upfront about that with everyone. They will set "goals" to help you get her out in that 20 days, if you do.

Actually, doing the 20 day rehab a few times was a good "dress rehearsal" for me to "audition" a couple of the facilities in our area, so that when my mom had her stroke and *had* to go into a nh, I had some points of comparison to go by.

Oh, another thing that comes to mind. Last summer, when my mom was so sick, we set her up as DNR. One of the nurses asked if I wanted her on hospice status, too. I told her that the Dr. told me she was not there yet. So she's not on hospice, but when she gets to that point, they will provide hospice care at the nh for her. She's on Medicaid, now, too. So I don't know the implications money-wise for that.

COscrapper, the main thing is that as you work your way through this for your mom and sister, that you take time for yourself to de-stress. Go for walks, take a warm bath, journal, etc. I was a total basket case last year. I was emotionally and physically exhausted, and I'm only just now getting the wind back under my sails. So please take care of you!

Hope this helps. You're in my thoughts and prayers.

Hugs,
Barb
Hello COscrapper,

Welcome.. so many important issues here.. I will just list them..

your mother's age

does your mother have a substantial savings etc with her home, properties, pensions etc?
Are other names listed as joint on any or all of her banking, investments, properties etc?

depending on the state, etc., generally an individual can be placed into a nursing home and remain permanently... medicare will kick in for 20 or so days as Barb said.. and then if she is to remain in the home, any monies she has will be used until they are used up and then medicare will kick in again.

there are also ways to disperse your mother's holdings legally... she is permitted to gift family members $10,000 each with no taxing yearly and other ways to have her money protected... If you downspend even today by writing a check for all the monies to the individual that has the poa... you would have to pay a penalty so if she was being placed in the nursing home, you wouldn't be responsible for all of it.. but you need to check with your mother's lawyer and I would encourage you to contact medicarerights.org because they have been set up to advocate for individuals .. there info can be found at:

http://www.medicareinteractive....php?topic=counselor

you can also call the local hospices in your mother's area as some might admit her.. however, I discourage you from even hoping that Medicare or Hospice would provide round the clock care for your mother...

you can check with the local area agency on aging for other options.. or their local department of aging...

there are check lists here at the site for choosing a nursing home..

are there other family members who will oversee her care if she is placed in a nh in PA? Are you willing to place her into a nh in Colorado? Is that possible? Would her medicare be transferred and active/

There are lots of decisions that you will need to make... I know I haven't given you direct answers, but it's a start... with more detrailed info, I could probably direct you a bit more..

You can also call the eldercare locator for services and referrals at: 1-800-677-1116.

Please keep us posted...

gail
Thank you so much for responding! bamagirl, yes you got it correct. We were hoping to transfer her to an in-patient hospice, but all her doctors agree she is not there yet physically. The problem is that the cancer in her brain (so they say) is finally just affecting her brain function. She's grabbing at things that aren't there, speaking in german (she grew up in germany), and sometimes speaking in gibberish. I spoke to her on the phone briefly and was able to understand MOST of what she mumbled, however...so awful to hear her that way.

Anyway, yes, because she needs 24-hour care RIGHT NOW, the hospital needs to move her to a nh (they can't keep her indefinitely). My sister (who is there with her) has a friend who is a nurse and has worked at every nh in the county. The ones she recommended of course did not have an open bed and we are now making our way down the list (closer and closer to the ones she said she wouldn't send her DOG to!!!) trying to find an open spot to move her to. Yes, my sister, my aunt (who is driving there today from KY), and me are all looking at this as TEMPORARY and want to get her out of whatever NH AS SOON AS POSSIBLE. I just don't know where to start! I mean, I guess I should call Medicare today and see if there's EVER a situation where they would help pay for homecare? The social worker at the hospital said she has seen cases where they will do that cuz it's actually less than paying for her to be in a facility??? Has anyone ever heard of that???

As far as my mom's assets, she pretty much has nothing. We were very poor growing up and she was a single parent, worked at the local Girl Scout Office her entire time in this country for a meager wage. She put the house (her one pride in life, which is why she wants so desperately to be there) in me and my sister's name a long time ago and a lawyer helped us do all that so that it couldn't be taken from her. My sister and I split the house payment right now, and my mom has a car that she paid cash for and refuses to get rid of (even though she can't drive anymore). But nothing else in savings or stocks or anything like that. She applied for Medicaid twice but was denied...I can't imagine how poor you have to be to get medicaid because she has NOTHING!? Should I look into that again, or would medicaid not even help me right now?

Oh, my mom is 59 - last year when she started to really decline I looked into some community programs and they all started at age 60. She won't be 60 until February. And no, she will not move out here to CO. Believe me, I've been trying to convince her for years because I'm a stay-at-home mom and she could be with me and my son all day instead of alone in PA (my sister works of course). But she does NOT want to leave her house.

I guess I'm just wondering where to start to see if we can get her this care at home...has ANYone had 24-hour home care?
Hello COscrapper

You really do have your hands tied with options.. your mother is truly not yet eligible for Medicare and I am not quite as familiar with Medicaid..I tcan't hurt to start calling both to see what they may provide.. sometimes you can catch someone on a bad day and you may not get all the right answers you need.

If your mother's memory is beginning to fail, you might consider selling her car and her home to pay for care, bringing her out to Colorado and placing her in a facility nearer to you and your sister... while you said it was a definite no, if her memory is failing due to the cancer spreading, it may be an option... to begin readying her home when you visit and possibly begin showing it may coincide with her detrioration so that you can move forward from this aspect... keep us posted as to how you are making out.

gail
Gail,

My mom has medicare now - it's her only insurance...I was just wondering if medicaid would help us at all right now if I got her qualified for that. From my understanding, Medicare is going to review her case in 20-30 days and we will have to make another decision. Either she improves and can come back home, or we have to look into long-term care, which medicare will not pay for. OR, if she REALLY deteriorates, she will be eligible for hospice and can come home on that...I think???

I am going to try to find someone that can help me with applying for medicaid this week...although again, I'm not sure if that will even help us right now. The GOAL is to get her HOME.

And selling my mom's house is not an option. My sister lives there with her, and my sister wants to stay there for now. Besides, my mom worked and sacrificed her whole life so that she could keep that house and pass it on to us; we're not going to take that from her.

I guess no one here has managed 24-hour care at home, then? I'm wondering if we can get away with having insurance pay for part-time help if we can cover the other hours by hiring someone privately...any thoughts on this???
I would encourage you as I mentioned before to contact the MedicareRights.org at:

http://www.medicareinteractive....php?topic=counselor

they are a very helpful advocacy organization for the lay person .. their site may give you ansswers and you can also contact them in NYC if you need further assistance.. The reason we all are not able to give you the answsers you are looking for is bevause it doesn't look as optimistic as you would like to have it be.. but don't stop looking because as I also mentioned before, each state has it's own addendums etc.. I would say that out of thousands of caregivers I have spoken with..l perhaps less than 50 have the care you are looing for and their situations are even more serious than your mom's if you could understand what I am saying. I am not dimminishing any of it.. it just is.. please keep us informed... my thoughts and prayers are with you

gail
Hello COScrapper:

Welcome to the boards. I am so sorry that you are going through such serious health issues with your mother. She is still so young and it is so tragic...

Well, so far there is little that I can add. My experience has been, as Barb has said, the NH rehab experience with my father and his hospice care a few years later. All I can say is the more allied the family is, the better.

We had private nursing care when my father was on hospice. That was only during the daytime and was dreadfully expensive. I do not know much about what is available in PA, but there may be funds available for care-givers through the Department of Social and Health Services (that is the name of it in our state) which is the same department that handles welfare recipients. I have heard of other care-givers receiving such funding but it isn't much... It might be worth checking out.

My attorney said that if there are no assets, then Medicaid will pay for a NH. Of course, spending down the assets is a personal decision and can have adverse affects in the long run. It may or may not be advisable.

The thing is, we oftentimes make promises that are hard to keep... The promise of never putting someone in a nursing home is very familiar and can cause us all some stress. I care for my father full time but my mother is in an assisted living situation by her own choice. For that I am grateful... Yet, she enjoys it! I now think of assisted living, in some cases, as similar to my experience moving out of the house into a college dorm - but my mother was healthy when she moved in. The activities and her freedom is unique. So, for some, it can be a good thing - there is a social life and meals!

I don't know if this helps at all. But our parent's experience in a NH does not have to be lonely or neglectful... The quality of their stay can depend upon the caring love and support of their family that will visit them there and advocate for them in the meanwhile.

I hope these comments help... Take a deep breath and do not fall prey to stress. Write down in your journal what you feel your choices are and rate them according to what is best for your mom and what is best for you all... Please keep us posted and know that we are here for you and sharing our stories which we hope can help...

Love and Hugs from Glenda


[This message has been edited by glenderella (edited 07-22-2006).]
I wanted to add a suggestion, I have not posted in a long while, but do check in to read the posts often. Some might recall that I take care of my Mom (she has COPD, CHF, a trach, a feeding tube, and cancer to name a few things she suffers from). When this started almost six years ago, we could not find help for her, so tried a rehab center for a short time, then brought her home. I paid for nursing care a few hours a day and I took care of her the remaining hours. We tried to get Medicaid and were refused. After about nine months, I simply was not able to continue to pay privately as I retired to care for her. Then we found that the local Office on Aging (I am told every state has some version of this) had a program called Medicaid Waiver, this is a program designed to keep the aged and disabled in their homes. If the person is under 65 the program is called The League of Human Dignity. The way it is set up is that that my Mom must pay all but $ 412.00 of her income each month towards her own care and then Medicaid will cover the rest. However, when a family member or members agree to live in the home that money is paid to them to keep the person at home and oversee their care. In our case I am paid the money (which I can give back to Mom for her needs), and then Medicaid will pay for 35 hours of care (per week)for Mom and I take care of her otherwise. This is in addition to her Medicare that covers her medical care.The program falls under the state Health and Human Services Division.I do not know if this type of program could help you or not as there needs to be some family members close by, and it is a huge commitment. By this I mean I had to agree to be within a certain distance of my home (Mom lives with me), and be able to be available at all times, with no time off. While I love my Mom, I have to tell you that I would advise anyone to think about this carefully, as committing to care for someone 24/7, is not easy. I hope this might give you some ideas of where to look for help.
Take care,

Vicki
Hi Gail:

Thought I should give a little update, I have to say that our situation is so different from what it used to be. Mom is still in need of constant attention, although it is easier to cope these days. I think I have finally come to accept the reality of her illness. Like so many, I fought long and hard to make her "better" and that was impossible. The amazing thing is that she is still with us after so much has gone wrong with her. We have found a doctor that comes to the home as she can no longer be moved without great difficulty, and he always tells me that he has no answers for her continuing to be here. As you probably remember she has many different diseases, any one of which should have ended her life years ago. Personally, I believe she has a purpose that is not yet fulfilled. A higher power has a plan for her.
It is nice to hear from you, and take care.

Vicki
Thank you all so much for your help. Vicki, I've heard of these "medicaid waivers" - but, how did your mom get a "medicaid waiver" if she's not on medicaid?

The past few days have been completely nuts for me. Besides dealing with my emotions from hearing my mom sound completely insane over the phone (bouts of uncontrollable crying for me), I've been on the phone with medicare, medicaid, state assistance offices, social workers, our lawyer, and I may have been speaking with Santa Claus at one point. I am exhausted. I do think I made some progress today, though. My mom's (our) lawyer says I don't need to worry about medicaid taking my mom's life insurance or the house or anything. He said do the best we can for mom now and go ahead and get her on medicaid; I hope he knows what he's doing! One of the billions of people I spoke to yesterday is mailing me the medicaid application, so that should be here any day. I'm also flying to PA next week (Wed.) to see my mom and help with anything that I can.

In the meantime, however, the skilled nursing facility where she's at already wants to move her to long-term! Physical therapy says there's nothing more they can do for her, and they'd like to have her moved to a long-term facility by Saturday! So this initial move really did not buy us any time at all, like we had hoped. So now we're back where we started, trying to find a decent place that has an opening. That has to be our focus right now, and once she's settled maybe THEN I can finally start researching home care (and hopefully get her on medicaid). The good news is that her medicare plan will cover the long-term care for 100 days before she would need medicaid or the state to step in. So we SHOULD have 3 months to work all that out - I THINK. That's what it sounded like to me, from everyone I talked to today.

What a run-around! If anyone has any additional suggestions or ideas, post away! I'm sure I'll have more questions as we move forward with all this...

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