Such a sad day yesterday as we preplanned our funerals. Selecting a casket is truly a downer, but I feel it is so important for John to have a say in things while he still can.
My question today is about how those in the US found Medicare coverage for their loved ones needs. Are many of you on Title19/Medicaid? Do you all carry long-term healthcare coverage in case your loved one requires nursing home care? I am going on Medicare in August, but John still has another year to go. John is still ambulatory, but I know it won't belong before that changes. We are changing over the bath to be wheelchair friendly, but I am very concerned about the long term care expenses and how, if possible it is to plan for.
I'm sorry, I know this is a cold topic. Being a primarily left-brained person, I really struggle with getting my mind and heart in sync. Some days are so emotional, yet the need to try to prepare for something I know I have no control over is so strong. Feeling a little crazed at the moment.....can you tell?
All of you come to the table with such great wisdom and insight. I would be grateful to hear your advise. Hugs to all, Alice
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Hi, Alice. Not to worry - all of us struggle to keep our hearts and minds in sync with this - it's so hard to plan, but we have to try. I don't have any answers about Medicaid. My guy was covered by the VA, which was a mercy, as he never had long-term care insurance. I was able to keep him home to the end, with some help so I could keep working, some privately procured and some subsidized by the VA, and they gave me a few respite weeks, too. With Medicare for his physical therapy, we managed.
I hope you get some better and more helpful answers, but I didn't want you to think you weren't heard. This thing can make you crazy. Try to take care of yourself as you can.
Dear Ec, Thank you for your response. I hope to keep John home to the end if possible - you just never know what lies ahead. Ironically, John worked for the VA for 38 years but since he never served, we are not eligible. I do hope others respond as to how they are and/or did cope with the expenses. You work all your life and save so that you are comfortable later on, only to be handed such a devastating disease that your nest egg can be depleted in months if you end up having to use any type of nursing home facility. It truly is not all about the money. I just would really like to make it stretch so that he wants for nothing.
Dan has recently been approved for VA healthcare under a program for catastrophic disability. He does not has military disability status. We are hoping to receive some equipment and home care.
Dan is not eligible for Aid and Attendance. Do you know what program your guy received help from?
Thanks So much. Any information is appreciated . This is all a whirlwind .
Yes, the catastrophic disability declaration is what got us help from the VA. It saved us. I was surprised to learn that local offices have discretion over that, entirely depending on their available resources, so some folks, in more populous areas, can't get the help we did.
We were turned down for the home aide subsidy at first, but the wonderful nurse administrator kept reapplying on our behalf, and finally we got 10 hours a week, which became 12, 14 and ultimately 20. I paid the agency the VA had the contract with myself for some hours beyond the subsidy, and then was really lucky to find a wonderful woman whom I paid privately for 20-plus hours.
We were given lots of equipment - everything we needed really: grab bars for me to install, the stair lift, outdoor ramp, customized wheelchairs, hoyer lift. Some care was billed through Medicare and some through the VA. We had a few rounds of PT, SALT and LSVT through Medicare. The VA doctor coordinated with our GP as needed for referrals and prescriptions. We were very lucky to have a wonderful VA hospital, the first in the nation, right here in town, and the staff was so caring and kind. Once we were accepted into the palliative care program we were supported to the end. I will always be very grateful to the VA and the people here.
There is a one-time grant available for home renovations, like installing a wet room, that you can apply for. Something like $5,000 dollars worth. I couldn't find a contractor so never did apply.
I know the quality of VA programs varies around the country. I hope yours is as good as ours. Everyone everywhere should have the care we had! That Alice's husband could work for the VA all his life and not get care there seems a bitter thing.
So happy to hear that your VA was a good one. Same can be said where John worked - he was so proud of the work he did. Unfortunately not all are created equal.
At the risk of sounding stupid (I know, nothing stupid here what does SALT and LSVT stand for. I will assume PT = physical therapy. Is the grant only thru the VA?
SALT is speech and language therapy. LSVT big and loud is a program of speech and physical exercises targeted for Parkinson's. Videos can be found online. Really helpful for us and fun, too. The renovation grant was just from the VA.
Thanks you for your help. I believe the VA hospital in our city is also good. Dans neurologist is at the medical college here and said she can refer us to a very good neurologist at VA. We are still in the process of figuring out what services we can receive. I believe Dan will be part of a home based primary care program. His primary care provider will be a nurse practitioner who comes to our home.
Do you have any information about any residential care provided by VA, I certainly hope it never comes to that. I know hospice care ( both in home etc) is covered by Medicare .
I never thought this would ever be part of my day to day thoughts .
I hope things are going well for you since the loss of your special guy. He sounded like quite an amazing man.
In our area, nursing home care is provided by the VA through contracts with independent nursing homes. There is light oversight of these, so the quality is variable. The cost is subsidized, though, so that is an amazing benefit.
The care provided through the VA's own 12-bed hospice unit was what got us through the end, and, with the respite care provided there, allowed me to manage to otherwise keep my guy home. They kept him a few times for a week to try to manage his medications when his symptoms required, and they took care of him for me when I had family emergencies calling me out of town. The staff there was so sweet to us, and the medical care was great.
Thank you. Eventually , as things progress, I will take someone aside and ask about hospice etc. I also worry about other family emergency’s . I have a elderly brother 7 hours away recovering from cancer.
I hope to keep Dan home, a breaking Point would be my inability to sleep , or constant severe choking. I want him as comfortable as possible. If he looks scared or in pain, I would seek more help. He is very apathetic which makes everything harder and uncertain .
If the option presents itself, I would like him to be in residential hospice the last few days. I would like to have the time to love him, hug him and hold his hand as his wife not his caregiver. To oversee his care, but not feel responsible for it. Also, to be with our children.
As I wait to see what VA will do, it is a double edged sword. We want and need help, yet with people in and out , it can be a little crazy.
Medicaid WILL ONLY kick in once you have spent everything down to $2000.00, that's the new limit for 2018, up from $999.99 in 2017, least in the state of Missouri. You can own your house, they can't make you sell it, but they can consider any other property you own as part of that $2k limit. There are strict guidelines on "gifting" of money or property also.
Seeing what Dad has gone through and knowing what nursing homes cost now I've looked into long-term care insurance for myself and wife. Most of the providers I talked to say the normal term policy is 3 years, all based on statistics. All insurances rates are based off certain criteria so prices by person may differ slightly, rough estimate for myself and wife was around $300/month..not cheap. That would get a policy which would pay about $6000.00/month for 3 years, in home or nursing home long term care. This is all rough pricing as I was just seeking estimates and didn't buy anything.
Thanks Ron! Yes, we went over some of the limits & etc. for Medicaid at the funeral home. By setting aside money in a funeral account we are protecting that money from the government coming forward to collect any outstanding debt upon John and my death(s). How has Medicare been along with any supplemental insurance program your dad may belong to. Do the payout expenses fairly well? A hassle? Is there any type of Hospice program he can belong to? I'm getting ready to check into long-term insurance but fear at our age and John's condition the cost will be prohibitive. Rest assured that the insurance company is NEVER is on the short end.
I hope your Dad is holding his own. What a terrific son you are to take on this horrendous responsibility.
Hi Alice, Medicare has taken care of all of our healthcare costs along with a good supplemental policy. Including wheelchair, walker,therapy etc. we are in the clinical, and that medicine is taken care of by the drug company as well as all doctor visits.
Wonderful news! We go to Chicago the end of May to see if we qualify for the clinical trials there. John still has 1.5 years on his extended policy from the VA, then it's on to Medicare. Beginning to feel a little better. Thank you! Alice
The clinical trial pays for everything transportation,hotels, meals etc. plus the medication for the rest of your husbands life. Definitely purchase a supplemental policy once you get on Medicare though as they do take care of all the rest of your healthcare that Medicare does not cover.
Hi Alice, we tried to get long-term insurance in Sept. 2016 before we got the official diagnoses (CBD/FTD) Dec. 2016. My husband was turned down based on the test they did and he already had been diagnosed with depression & anxiety. I have an eldercare attorney working to get him medicaid. He is on SS disability and medicare won't start until Sept. 2018.
I'm trying to take care of him and protect our home and a few assets. I have to work full-time for another 7 years before I can retire (plus I cover our health insurance). It's not cold to plan for your future, while taking care of your husband. Our husbands did not work all their lives for some NH take everything. I know my husband would want me to keep our home and not have to worry about how I'm going to pay the bills.
So scary isn't it? You want to do the absolute best for them, but on the same hand we will be left to pick up the pieces - hopefully there will be pieces left to pick up.
I know the long-term insurance is no longer an option for us, so we will just keep plugging along.
I promise to share any and all new information that I uncover. I can only imagine how hard it is for you to work full-time and care for your husband. Please - take care of yourself as well.
My son died on May 4, 2017, just five weeks past his 55th birthday. He was DX with PSP by a Kaiser neurologist.....Datscan and MRI both done/used.
We both live in Los Angeles, California. We each had our separate homes, 10 minutes apart. I am 77 years old and therefore qualify for Medicare.
Yes, as a retired professional I purchased LONG TERM CARE (LTC) back in 2003/4.
My son was NOT eligible for Medicare (age) and because of economic assets NOT eligible for medicaid. We sought legal counsel from one who specializes in medicaid to explore what needed to be done to receive medicaid. My son did NOT have LONG TERM CARE. He was on CalStrs disability and had applied for Social Security disability. He received word that he qualified for Social Security disability AFTER HE DIED.
I gave GREAT THANKS to President Obama for the Affordable Care Act (ACA). It provided the access to health insurance after he was disqualified from his for his PSP DX and then refused health insurance because he had a PRE_EXISTING CONDITION.
Once you have been DX with a neurological condition I do not know of ANY insurance company that will offer/allow the purchase of LTC insurance.
In the United States, if you are/were my son's age and in his circumstances, you basically have to cover your own medical costs for PSP until you have NO assets of any kind. He started using his savings. I contributed.
I have also looked into this regarding care for my husband . I believe some of the information given is not correct for husband and wife. I have consulted a couple of attorneys by phone and received basic and someway conflicting information .
I was told you must keep track of all medical care expenses . When 1/2 of the couples assets have been spent, he may be eligible for Medicaid . Your primary residence is exempt, but you may not be eligible if assets at the time of application are over $200,000. The idea comes from feeling half of the assets belong to the wife .
Unfortunately , I have also been told that most of the decent care facilities have a minimum of a year or two private pay . We are in Wisconsin .
Medicare will provide physical therapy, bathing and nursing care after a hospital stay. Also home care for a catheter and hospice care.
Dan has Medicare and a private pay Medicare supplement . They have paid all medical bills including Mayo Clinic.
I will go on Medicare this summer, a year before John. I really am just learning what it all covers. I believe the real trouble starts if and when you would have to change over to Medicad.
I would like to keep John home to the end if possible. That said, I read some of the posts and realize that, that option may be totally removed from my control.
Are you still going to Mayo Clinic? Have considered it. Are you satisfied with the care you've been given?
Thank you for your reaponse. Wishing you and Dan the best.
We were happy with Mayo. They did testing and made a final diagnosis. The doctor explained the results from all the tests and explained why he felt he had PSP. Dans disease has progressed rapidly and Mayo agreed to leave no stone unturned before making a diagnosis .
Karyn, so glad that you have the Mayo Clinic in your corner and see that your area VA is also able to be of assistance. I'm sorry to hear Dan's disease is progressing so quickly. Hope you get to steal bits of time inorder to regroup. This disease is so hard on everyone.
I am so sorry to learn of your son's passing. Not only did you both have to fight this dreaded disease, but outside sources as well.
Thank you for your response. Yes I am sure that there is no LTC insurance company that will touch John at this point. Luckily John was allowed to keep his insurance when he retired, but you are right that the ACA has helped so many people.
Medicare is right around the corner for us so it should be interesting.
Thank you again. I hope this past year has allowed you to find some peace.
I live in Milwaukee. Wi, so I believe the VA that will be helping my husband is likely where John worked.
I have been trying to navigate home health care and have met with many obstacles . I have learned that there are a few instances in which Medicare will help provide home visits . They are based on medical need. Medicare also provides physical therapy etc. in the home when deemed necessary. There is an outline on the US ..Cure PSP blog.
I realize this is not something you need now. I hope you and John have a great week .
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what does SALT and LSVT stand for. I will assume PT = physical therapy. Is the grant only thru the VA?
Accessible to our loved ones when they need us.
Medication
There is hope for us all!
Change of medication.
My beloved husband about to leave us forever
