Week 21: What About Mom?
By Elizabeth Shean, Caring.com contributing editor
The Saturday before Memorial Day, Lee and Dad and I made a pilgrimage to the national cemetery, where both Lee's parents and his brother are buried. We laid flowers at their graves and spent some time mourning them and celebrating their lives.
The next day, I found time to call my mom. I haven't written much about Mom because my focus has been on Dad. However, my mom is alive and living in the family home in another state.
Last September, after Dad's dementia was diagnosed, the situation quickly became too much for Mom to handle. Not only was Dad hostile and aggressive towards her, but Mom also deals with her own challenge: She has schizophrenia.
Despite this, Mom for years ran the household and coordinated Dad's increasing number of medical appointments and prescription medications. She navigated the health insurance maze and helped manage their retirement accounts.
Mom functions at a higher level with her illness than many others function without such a handicap.
Nonetheless, Mom's behavior cannot be described as "normal." And so it was, when I called her on Sunday, that before she even said hello to me, she blurted out, "How soon will your dad be going into a nursing home?"
She asked this for one reason and one reason only: She's worried about money.
As soon as Dad goes into a nursing home, the facility will get almost all my parents' cash before Dad ultimately is forced to go on Medicaid. This will leave Mom nearly bankrupt. Naturally, this is an upsetting thought for someone who has worked hard her entire life and amassed a significant retirement fund – but not enough to pay cash for her husband's nursing home care for untold years.
And so, I try to reassure her. Part of the reason Lee and I invited Dad to live with us was to avoid the expense of a nursing home. We'll do our best to keep him at home as long as possible.
The problem is that Mom is aging, too. She recently turned 76. Her antipsychotic medications have terrible physical side effects that leave her frail and shaky. She feels she can't live alone much longer, certainly not in a two-story house with a large yard she can't possibly maintain – and can't afford to pay someone to care for. Besides, she's lonely.
The truth is: Mom needs to come and live with us, too. She needs me to take care of her. And that's not possible while Dad is living here, given the frigid relations between Dad and her.
Hearing Mom's anguish over the phone lit a fire under me. I'll be talking with Caring.com senior editor Joseph Matthews, an expert on Medicaid and other government benefit programs, in the coming weeks to see what our options are. Surely there's a way to get both Mom and Dad the care they need without bankrupting them and forcing them onto government assistance. At least, I hope so.
Well, that one was so unnecessary. This is not the place to send your little advertisements. This is a serious blog about a woman who is dealing with some very hard times in her life. How dare you think you can just jump in here with your junk??? We would so appreciate you staying off of here. The blogger doesn't need to deal with you. Get a life! Sorry about this, Elizabeth and everyone else. So inappropriate!!
You need an Elder Law Attorney... www.NAELA.org My grandfather had the same issues when my grandmother was diagnosed with Alz. He needed to "put away" substantial assets before he could get her on Medicaid or he would have been cleaned out. Speak to an elder law attorney, many offer flat rate planning and will certainly give you peace of mind.
I guess that one has to accept that low/no cost health care does not come with strings. The sheer number of veterans 50+ is burying the VA System, and besides service related disabilities, they must deal with dementia, chronic arthritis and other age related illnesses. Wait lists for surgeries that are considered elective will sit there for many months. Both of the VA hospitals in the Chicago area are huge, and generally can take my dad within two weeks of a referral to a specialist. And while some of the buildings are older, and have a distinct 'barracks' flavor to 4 patients in a room, I've not had any issues with the quality of care or staff. Too bad others are not so lucky.
Wow, Elizabeth! It sounds like you have plenty of knowledge about the VA system. I know you are smart enough to sort through all of that and decide if the system will work for your father. I think the more pertinent problem is how you can help your mother, without her losing all of her assets. In case you didn't read my first response, does your father still rant about your mother?? Has his attitude changed at all towards her? It's possible that as his Alzheimer's progresses (and it sounds like that is the case with him...it seems to be progressing rapidly right now), he won't remember what he was so mad at her about. More than likely, very shortly, he may not remember her at all. I know how impossible that sounds, but, it certainly happens. Heartbreaking, I know...I feel so bad for you on this. However, things may change quickly enough with your father that it may become possible for your mother to move in with you, also. I so don't envy you on this. As always, my prayers and thoughts are with you!! God bless!! {{{hugs!!}}}
I'm not going to get into a debate about the merits of the VA system, qualifying for VA benefits, etc. However, I can share personal experience. My late father-in-law was an Army retiree with 100% disability. For the last couple years of his life, I was the one who drove him to all of his doctor appointments at the local VA hospital. He paid nothing out of pocket, due to his disability. However, appointments at the lone VA facility in my city are scarce. There's a 1-year waiting list for cataract surgery, for example. My father-in-law booked his appointments with specialists months in advance. My late brother-in-law also received care at the VA. However, because he had only a partial disability (and because his wife worked), he had to pay for prescriptions on a sliding fee scale. Often, his co-pays rivaled what my dad pays for prescriptions. My dad is, indeed, a veteran. What complicates things a little bit (or at least makes it harder to compare the benefits of one system versus another) is that my dad's primary health insurance is not Medicare; as a civil service retiree, he retains private insurance as his primary, with Medicare Part A only as his secondary. In the past, my sister and I have investigated VA benefits for Dad. We didn't see any advantage to it at the time, but maybe I will investigate again. One thing's for sure: he won't be going to the VA nursing facility. There is only ONE in my state, and it's several hundred miles away. That won't work for me. Thanks so much for all of your input. I appreciate your thoughts as we continue to try figuring out what's best for Dad and Mom!
Hugs Kiki's Girl
If your dad served (even one day) during active wartime, both of them should be eligible for benefits for long term care. Someone told me about this to try to help my mom (my dad passed away 10/07). Unfortunately, he got out a few months before the war. You may want to read the information at http://www.altcsplanning.net/veteransbenefits.html. Otherwise, you may have to "spend down" their money. I think it depends on the state, but if your parents sign everything over to you to qualify for Medicaid, they would have to live for 4 or 5 more years before it would work. If not, then Medicaid would come after their assets. I know exactly where you're coming from. I had to do this for my parents and it was heartbreaking...having to get rid of everything they worked so hard for in order to get assistance when they needed it. I hope this helps.
LuLu, we are also in Florida. In the final analysis, in Florida...a veteran's assets are not considered at all for eligibility or priority for admission. All they care about there is military service, discharge, disability and medical necessity. In Florida, there also is a 1-year residency requirement but that varies widely in other states. My mother's 10% disability would have gotten her nowhere (literally) in applying for a Federal VA home...but it put her at the top of the list for a Florida state home. What is usually a 5 month list became two weeks for her. As far as payment, the Florida system takes all income (and ONLY income) - as verified by tax returns, bank statements, or what have you - and including the previous year's interest income. They divide that out to find the daily rate. Period. That's it. My mother's rate is about $88 a day, fully paid by her monthly income. When I document that she no longer has the same interest income, they will reduce that rate. We keep her income in a joint account and pay her monthly bill from there - no one 'takes' her money. They do, however, want every vet in a state home to also be on Medicaid in order to get more federal dollars. That, of course, means getting rid of anything that's 'over asset' by Medicaid rules. In our case, my mother gave money to all her kids and grandkids in the past couple years, which means she probably won't be eligible for Medicaid for the full 60-month 'lookback' period. Each state handles its VA homes differently. So if you have any questions specific to Florida feel free to contact me - I'm no expert, but I'm pretty well educated. Good luck!
Thanks for your input. My dad was in the VA system but my mom decided to take him out because of the drive to get there. As dad is still driving (but should not be), and mom is able to drive (but afraid to) - going to the VA was not high on the list. She also told me it would cost her less with his Dr. visits and meds if she just stayed local. It sounds like that was not a good decision and I need to push her back and get dad back in the system.
Hugs Kiki's Girl
One additional comment: BTW, Medicare does not go away - if you need emergency care (as my dad did once)at a non-VA facility, the claim is filed by the hospital or immediate care facility through Medicare and Supplemental.
There are two aspects to care under the VA: the first serves as the first insurer in coordinated benefits with Medicare. Yes, you have to submit financial information. You can find these at www.va.gov. These would be submitted locally to the regional facility - you may have to check to see where that is. We are lucky in Chicago to have two hospital facilities and many satellites. If he passes legal thresholds, he will then go thru a health check. I found it useful to get copies of all key medical procedures and physician release notes from his prior doctors. 25 years of records cost me $40, but it was very useful to his NP and specialists to know his heart and neuro issues. There after, it's business as usual. You will get an invoice for whatever the VA and any supplemental insurance does not cover as well as copays and deductibles. The second way the VA can assist is in living centers that provide varying levels of geriatric/memory care. The primary care MD or NP treating the veteran or his/her spouse needs to submit medical information to the Admission (ADjutant's) office verifying the appropriateness of whatever level care is being applied for (for example, the skilled nursing floors v secured memory care). The veteran or the POA needs to complete financial information (the typical income/assets information) as well as any POA designations. This will have to be resubmitted just before admissions to update information, as some wait lists exceed one year. First step is to get the vet into the system. Not a painful process at all, but can take a few weeks so start now.
It is my understanding that the Fed VA also requires a financial form to be filled out and if you have assets, they still make you pay for everything. Is that true? Is the state VA process different? Should I look into Florida's separately? My mom and dad are going to need help.
I agree with KiKi's Girl: After months of my cousins (who work for the VA)pushing me to get my dad 'into the system', and the same from my dad's Geri MD (who splits between a teaching hospital and aVA facility) - I filled out the paperwork. He is now paying a fraction of the cost on his meds v. Part D. And he is on the wait list for a skilled care/memory care facility in Illinois...which they said would run just under $1k per month for food, meds, room and board. Wheelchairs, hearing aids, etc. are not covered. Unfortunately, this particular facility has a 2 year wait in the memory unit, so I'm hoping to get him on that list as soon as he gets in to the skilled nursing unit and they re assess him. I still have concerns that they have not reviewed the 'fine print', allowing them to claim his assets....but that may be the difference between a state run VA facility and a federal facility. You REALLY need to check those benefits out. And look in the market for CNA caregivers. Ironically, many are out of work as states fail to pay facilities, and facilities opt for non-CNAs who work for minimum wage v. the already low wages around $10/hr for CNAs. You may find yourself filing taxes for them, but it may be worthwhile. I found a great young lady, a friend of my neighbor's daughter, and she is wonderful. I'd met her before, she is generally on time(the most reported problem with CNAs) and I can trust her most importantly. And she likes old geezers, which means my dad can babble on and on, and she takes it all in. She has been a lifesaver, and has made it possible to take on a part time consulting contract after 19 months unemployed. Please, explore options. You may find relief for your Dad, and bTW, his wife is entitled to benefits too, assuming he is a veteran.
Meant to add...you must be in my area! Saw the pic of your dad at the national memorial...I live in the area, too!! :)
Elizabeth, I know when your father moved in things were not good between him and your mother. Does he still talk about her and, if so, is he still ranting and raving, accusing her of things she had not done?? I ask because, if he isn't doing that, it might be that he has "forgotten" all of that and might be ready for her to join him there. I know it will be hard work for you, but, you can get the help in to take care of one, or both of them. Also, I'd really look into that "Meals on Wheels" program that Galowa suggested a long time ago. Your father certainly qualifies for it...so would your mother. And, it would take some stress off of your husband with him not having to rush home and make the meals. I know how hard it would be for you to take in both of them...whew! I can only imagine!! Yet, if he has forgotten all those things, it might be a solution for you. As for the Medicaid issues, gee...I'm not sure on that one. You could become POA for both of them, transfer all the money into a separate account under your name, but, with your parents knowledge that this account is money that will only be used for them. Same with the house...if they own it, sign it over to you and sell it. Any profits go into their account. If they don't own it outright, have your mother sell it and the profits go into that account. I know this sounds a little tricky...not sure if it would work. You might run it by the expert and see what he thinks. If its "allowable" or not. Again, just a suggestion. Not sure if any of this is doable. Just trying to come up with something to help. As always, I feel you pain and suffering...please know that my prayers and thoughts are so with you!! Stay strong!! {{{hugs!!}}}
Is there any chance that either of your parents are military veterans? That's what has saved our family, financially.