For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic New here...bad day for my mom, big wakeup for me (?s about medicare/medicaid etc?) Go to previous topic Go to next topic Go to higher level

By overwhelmedinFL On 2009.09.06 11:46
I am very new here..I have spent the last two hours reading threads and would be so appreciative of any guidance from your experiences.

My mom was diagnosed 10 year ago approx with PD. SHe has always amazed doctors at her lack of progression with PD. Her docs are a the movement group at Shands Hospital in Gainesville FL which is also part of U of FL.

Mom's husband fell in March (her husband is 91), mom is 71. Since caring for him SHE has progressed rapidly with her PD and is declining quickly. No matter how many times we tell her to focus on her and her rehab she won't. We have put transportation in place, setup home health nurses to stay with her husband etc.. he begs her not to leave, not wanting nurses and she stays home and is NOT doing well.

This month she told us she is ready to give up her car, ready to move to where I live in Tampa and do an assisted living with her husband and be near us again. Many people would be so happy for their parents to offer going to ACLF but I am now at a loss of how to maneuver this.

I am calling my EAP (employee assistance program) that my employer offers, they do help in elder care.

I am wondering does medicare/medicaid offer any assitance towards cost of assisted living facilities? Her husband already qualified earlier this year for medicaid for a 2 month stay after he broke his femur. I don't know if mom will qualify as she has about 100k in retirement funds..i guess we will just burn through that and then qualify?

What special questions do I need to ask in regards to PD and ACLFs? I can tell I will be on the internet all day doing this research. No matter how long you see this coming it's like you are never prepared. I have legal docuents in place I am pretty sure I am all covered there.

I lost my dad at 42 and I am not ready to lose my mom. Dealing with a stepfather who came into my life way after I was out of the house is a whole differnt dynamic...step siblings that I have never really "known" and having uncomfortable discussions with them..ahhhhhhhhhhh

Sorry this is just a really long ramble... I just cannot stop crying..

By susger8 On 2009.09.06 12:06
Hi there,

Medicare only pays for short-term care (for example, for rehabiliation after surgery or an injury). Medicaid will pay for long-term care but you have to meet stringent income and asset requirements. Your mother wouldn't qualify at this point. Most assisted living places won't directly accept residents on Medicaid anyway -- they usually want you to pay privately for a year or two before going to Medicaid. I believe that not all states permit Medicaid to pay for assisted living as opposed to a nursing home.

One thing to think about is that assisted living is designed for residents who are relatively independent. Once the resident progresses to the point where they need a lot of assistance, they are out. If I were in your situation, I would be looking at continuing care facilities (where the resident can later move to an area of the facility that offers nursing care). I'm sure there are lots of them in FL.

Do yourself a BIG favor and contact your city / county Office on Aging (might be called something else) and get a social worker for your mother and stepfather. A social worker can be a huge help in navigating the bureaucracy, and can give you list of facilities and organizations.

Good luck!


By Pearly4 On 2009.09.06 12:21
My mother had to qualify for Medicaid to receive the Elderly Waiver funding -- monies spent to keep the elderly "at home" instead of in a nursing home. Some of that money would have been directed to her care in an assisted living facility -- extra aids, extra assistance, extra equipment, IF (and that's a big if) she had qualified to be accepted into the homes. There are only a couple of the facilities that are approved for the funding and with limited income she would have also had to qualify for Section housing assistance. And there was a two year waiting list at the approved facilities which were not located in the best parts of town and I'm not sure I would have wanted her there anyway.

Once there, you are at the facilities mercy -- some are very, very good. Some are very, very bad and alll have the right to refuse to continue to allow someone to live there should they deem their health or mental state unsuitable.

Very complicated. Burning through funds shouldn't take long in a really, really nice facility, but maybe more evaluation is needed -- calling your State or County office on Aging, or having a geriatric evaluation might be in order first.

By overwhelmedinFL On 2009.09.06 12:32
thank you thank you thank you

I am only looking at facilities with skilled nursing homes on site as my step father will probably end up there pretty quickly and I want them on the same "campus" so she can see him anytime she wants.

That is good to know about Medicaid not covering assisted living.

I will see if we have any elder resource social workers in my city. I am sure we do.

Thanks again. I am so thankful to find this forum, many forums are very slow and you cannot get responses very quick and I like that this is a "busy" place. name is Sue also! Thank you again.

By rajenriver On 2009.09.09 13:49
Not all, but some assisted living facilities do accept medicaid if they are willing to do the paperwork and be subject to the different government standards that go with it. You need to ask up front. With your parents situation, I would look at a facility that would support your mom and step father with higher levels of care if needed. We have several in our area that have assisted living through skilled nursing. We had my FIL in assisted living and they have limitations to the level of care they can provide and still qualify as assisted living. The one he was in, could not provide a mechanized diet. He had to go into skilled care to get that and swallowing can be a huge issue with PD.

By rajenriver On 2009.09.09 13:52
BTW, when we first had him go into the assisted living they knew that very quickly he was going to be using up the funds from the sale of his home. They were allowing 4 Medicaid residents at a time in their facility and it was brand new, so we got him in at a good time. Unfortunately he advanced to needing nursing care before all the money was spent so it wasn't until after he was in a nursing home before he became eligable again.

By Emma On 2009.09.10 05:07
Medicaid eligibility is a very complicated issue. Since your mother does have some assets you might want to talk to an elder law attorney ASAP. The social worker from Home Health Services who is working with us recommended that I do that in order to prepare for the day when my husband needs nursing care. They can advise you on the best financial course.

I worked in Human Services for many years and at one time was in charge of residential programs. I'm sure that a lot of things have changed, but Assisted Living is different in every state. Usually Medicaid does not pay for assisted living homes because they are considered residential facilities, not medical facilities. You would need to ask any home you looked at whether or not they were able to bill Medicaid for services. It probably depends on how they are licensed.

Good luck to you.

By susger8 On 2009.09.10 08:26
It looks as if Florida does have a program for the Medicaid waiver for assisted living.

My experience (husband's uncle with early ALZ, not PD) is that the most likely places that accept Medicaid directly are new ones that have a lot of empty rooms and just want to get some kind of income for them.

By karolinakitty On 2009.09.11 07:12
I don't know much about Florida probate law, but i can tell you about CA . Jim's grandmother is now 101 and in as assisted living facility. She is worth lots but what the attorneys did just before her going in was set up trusts with property and accounts with the grandchildren and great grandchildren as beneficiaries and contigent beneficiaries. This not only gives her "nothing" going into the facility but also sets up things for when she passes on. She can quick deed you or another family member the property in trust form. Trusts are not just for the wealthy anyone can set them up and it's not that expensive. If you have a family attorney they can refer you to a trust attorney. With the trust also comes a need to have someone who i unbiased in my opinion and will follow the guidlines instead of listening to family bull. That's where Jim runs into problems. According to the CA probate law he should receive funds from the trust to help with medical care. However, the trustee listens to gram, even at her age and mind capacity and cuase Jim isn't her favorite he gets nothing. So you have tocinsider all angles when doing this but it does help out with the bills. She is in a mixed facility with assisted, nursing and dementia care. She pays a little bit, but not the $10k a month it costs to live there......

By WitsEnd On 2009.09.11 13:38
Medicare won't help with assisted living. If your step dad is a vet, and your step dad/mom aren't capable of staying on their own, you may be able to get some assistance from the VA. If that's the case, let us know and we can chime in about how to go about doing that. They are much more lenient with income and asset limitations than Medicaid so a vet can qualify for help from the VA when they could'nt qualify for anything else--and they provide spousal assistance as well.

Medicare provides limited nursing home/rehab time (I think it is something like 60 days at year--it's not much.

I relate to your situation very much except mine was reversed. My dad looked after my mom and when she got seriously ill and then died, he went down hill. The worse she got--the worse his PD got.

Depending on how fast your mom is declining, she may not be able to stay in assisted living. If dementia sets in she will definitely need something more. Some facilities offer transitory care from basic assisted living through full nursing homes including facilities equipped to deal with Alzheimer's patients. Your considering their future needs is definitely a good idea.

I would suggest you check with the state licensing department, better business bureau and do web searches to see if any of the facilities have any complaints against them. Also, I would recommend looking at the smaller personal care homes. They are usually less expensive and in many cases can provide more personalized care than bigger facilities. My mom and dad were there at the end and they got to stay in the same room and be together with their dog. A larger facility would never have allowed this.

Make sure you get power of attorney and medical directives NOW. You may need that later. Be careful with trying to transfer assets to qualify for Medicaid--they go back--I think it is 5 years.

The only type of assisted living that Medicare provides is through home health care (rehab, etc. that a doctor orders) or through hospice. Hospice provides someone to help with bathing 3 times per week, nurse visits, etc.

Unfortunately if you aren't very poor and you aren't very rich, paying for care giving services or assisted living is extremely difficult. There are a few subisidized programs and you can call your local United Way for some referrals--but unfortunately most of those that are good have long waiting lists.

I wish there was something more positive I could offer. My heart goes out to you. Hang in there.

By overwhelmedinFL On 2009.09.12 09:29
Wow..I popped out for a few days and came back to much more responses..

Thank you again.

Here is my latest and then I want to read all your wealth of info.

We quickly got some help where they are (med help, therapy, etc)
We met with elder attorney again and he recoormends stepdad in nursing on medicaid then mom in independent. This is our cheapest alternative but we also have to take mom and stepdads feelings and wishes into consideration as much as we can.

Mom's annuity is not counted as an asset because she gets a monthly autmated withdrawal from it, they count it as an income..not as an asset. This is a VERY beneficial way we were taught to present their financial picture.

Because we have two people...and at best will get medicaid for one we do have some priority coming into the complex. They won't admit to it but I did call anonymously to see if any medicaid beds open and they have a 2 year waiting list. I called as myself and presenting my mom in independent but her husband needing nursing and a medicaid nursing and they did tell me he will be given priority on the list. It doesnt seem fair but in this case I guess I should be lucky we have two right now.

I am a becoming very jaded to the industry. It is a profit business and I get that but my mom being a self pay is like a hot commodity. I would be so mad if my parent was on the waiting list for a medicaid bed and kept getting bumped. I would understand if I got bumped by an ALF person movig down to the nursing but this would be my step father coming straight in from the outside to a medicaid nursing bed.

VA Aids and Assistance: We will be looking to go down this road in case they think stepdad will be best suited in ALF. If you have any good non-profits to work with let me know. I was given a phone number yesterday for vetassit from the nurshing home lady but I think it was a wrong number.

Medicaid waiver program for ALF: The ALF we have chosen does not do this now but they are trying to start it. It will help when my mom needs ALF but probably not right now

I have all the POA and other medical papers in order. I need more on stepdad..I am asking his children to do that. I don't want POA on him for fear they might think I handled something in a way they didn't agree with. Right now my mom has POA on him.

I am working on how to present this to my parents. Their expecation is that they will share a room, that might not happen based on their assesment and we DO have to take cost into account...It will not be the sole deciding factor but it must be considered. If they try to recoil we can put them together at the ridiculous cost but maybe only for 2 months and honestly stepdad would probably decline and they would make him move anyway.

Our goal....keep them as together and as independent as we can as long as we can. We want this to be mom's last place to live and we want her at the highest level of independence as she can handle...if she leaves this campus it will only be to live with me.

I hope someday that I can have the ability to stop working and donate my time and experiences to other people in need of navigating this world of assisted is just not supposed to be this hard.

By Pearly4 On 2009.09.12 11:16
I know of several situations where one of a couple is nursing home qualified at night, for instance, but returns to the "apartment" with the spouse during the day - or at least for a short time, so they aren't separated and aren't feeling "dumped" into a nursing home. Facilities are good about working with that kind of situation. In your place, I'd play on the "independent" situation as much as possible and use it to benefit your stepdad(?) whenever possible - force the issue of co-habitation at least part time using the private pay. I ran into it also -- terribly disappointing that the medical and elder care "professionals" feel that way, but I guess they're human too. When I discovered my mother was able to keep her private pay seconary health insurance in addition to her medicaid it not only helped "spend down" her assets but it provided her with better physicians and medical care, I believe.

Great work - sounds like you've been busy and thinking hard. I've thought too, there should be more places to gain the knowledge that one needs in these situations. Why does each of us have to re-create the wheel?!

By karolinakitty On 2009.09.15 07:55
I don't know whether or not he was wounded but there is an organization called Wounded Warriors that Jim and I have been associated with for several years now. THey not only lobby for better vet care but assist new warriors with getting physical and mental therapy. Greg Stube the PR guy lives here on the lake. One of the most known things they do which we have done, is take out guys fishing and hunting. That is not ALL they do though. If you need help or an advocate try them for the vets aid. You can find them at ......
My suggestion is not to email but try and find a chapter near you....I know there are many in FL..... There are some phone numbers on the site...and bug them... they are only a few volunteers to our many wounded vets......

By WitsEnd On 2009.09.16 11:20
For the VA be sure to go to the county VA office--do not go to the Federal. The county can get everything done. The Federal VA office is worthless.

By overwhelmedinFL On 2009.09.16 14:52
Thanks again for all the responses.

He was not wounded. As far as VA aids and attendance. I am going to request that one of my step siblings handle that portion of this process.

I am having a better day today than yesterday. I am realizing now what parts I can delegate out so I can get relief.

I also ordered mom's walker yesterday. She will be so excited.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you