There is no need to repeat the entire scenario of my Medicaid issues. The bottom line is that I am unable to afford either AL or NH for my husband, and I have to keep him home.
Medicaid has made me get on a conference call with my case manager and a supervisor and beg, plead, answer trick questions, and generally be beaten down to the ground, every time I ask for help in the house.
I have begrudgingly been given 4 nights a week ( a total of 4 hours a week) of “personal care” for Sid. Someone comes to undress, wash or shower him, dress him for bed, and get him into bed. They also provide 3 days of Day Care. The home care, while appreciated, is far less than needed. When I asked for more, they refused, saying that they were giving me the maximum they could, and I needed to put him in a facility.
Together, we agreed to have one of their nurses come to the house to assess Sid for NH care. I knew the outcome before the nurse even came. I figured that her job was to say that he needed AL, not NH. She and a second nurse came to the house, watched him try to get out of his lift chair, try to take a few steps, and asked me questions about how I handle his care.
Less than a week later (yesterday), I got a call from my Case Manager telling me that the nurses assessed him as AL, NOT NH material. No surprise there. HOWEVER, I then received a shock. No conference call. No argument. No making me beg and plead. She simply informed me that he was a top priority, being approved by the regional office for 7 days a week of personal care. ?????????????????
My take on the situation? The nurses must have returned to them with a scathing report on the severity of his condition, the inability of me to care for him, and the lack of services. My cynical self tells me that our situation has the potential to be a PR nightmare for them. If I broke some body parts, had a heart attack or stroke, and both of us were found on the bathroom floor by the paramedics, it would not be long before the press investigated and found that I had begged for more help, but was refused. As I said, a PR nightmare.
So as soon as it can be staffed, Sid will be getting bedtime help 7 nights a week. They wanted to give me morning help on his DC days, but at the expense of giving up a day of DC, which I would not do. He does nothing but sit in his chair and stare at the walls and sleep on non DC days. He loves and needs the DC stimulation and socialization. We will manage in the morning.
I have arranged for bus transportation to take Sid to and from DC on all 3 days, so I am relieved of wheelchair and driving duties, which will please my back and my back doctor.
Oh, Joan, so glad you are getting more help. It's an absolute disgrace that we have to beg, plead, and stand on our heads, to get the help we need. Hope things will be a little easier on you - and your back!
So glad to hear that help is on the way for you. Too bad everything is always a battle. You are a strong willed person and can see how these battles must be fought. You are in my thoughts. With admiration, Carol
Joan, I too am so glad to hear some much needed help is on the way. I think they decided to give Sid/you the 7 days because it is cheaper than ft NH care and perhaps they can justify why Sid only qualifies for ALF care and not NH care if he's getting 7 days of in home care. Right now I am very cynical about dementia care -public or private...they always find a way to screw the caregiver. Just my opinion.
Great news! There is never enough help. I am more and more thankful that my DH has taken things into his own hands before it is left to me and is on the list for LTC here. I don't know ifI could go through what some of you deal with each day to get the help needed to care for your loved one. I am so grateful to you for this site. You are my hero!! Bless you and yours!!
So sorry that you have had such a difficult time with Sid's assessment. However, it's wonderful news to hear that you will be getting more help, but as we know only to well, we need so much help not only physically, but emotionally and financially as well.
Anytime you deal with the government bureaucracy (bureau-crazy) there is so much frustration. It can literally beat onr down to a pulp (and I do believe that many (not all) are sadistic heartless humans who enjoy their power pleasure position. So very sad....
Glad your situation is improving. Also, thanks for posting about your situation and the persistance required to get help. You give us all the courage to persist.
Joan - I'm glad that some of the care is now off your shoulders. Rest, get your health back and hopefully start to feel human again.
Question from the north looking to the south and I do not understand how your system works down there only what I have read and I'm not judging just trying to understand. But if they took 1% of the military budget and put it to health care especially with elder care with the boomer generation now turning 65 wouldn't that be a huge help. I feel frustrated when I see how the federal government up here is wasting our money....46 billion dollars on fighter jets...we're 1/10th your population.
I do want to give credit where it is due. My previous case manager was a nightmare. My new case manager is wonderful. She truly has been trying to help all of this time, but she, too, is stymied by the system. The system (bureau-crazy - I love that) is set up to deny all and only give what is the absolute minimum. There are layers of rules, regulations, criteria, and endless questions that must be navigated BEFORE you are allowed anything. If you ask for too much, they tell you to place your LO in a facility. ( If you don't have the money to offset what they contribute, too bad. No placement) If you ask for too little, they tell you that you don't need it. Whatever they give, they try to offset the cost by taking away a service you already have.
I did agree to give up the emergency button system to get all of my new services. Their reasoning was that Sid is never home alone, so he doesn't need it. Basically, they are correct, so I didn't see it as a problem to give it back. Small price to pay for 7 nights of help.
Joan, I am so glad to hear that you are getting some additional help, even though it isn't really enough. I hope it doesn't take too long to staff those bedtime help positions!
HUGE sigh of relief! I am so glad you will be getting some much needed help and that you finally have a Case Manager with a heart! My sister calls our Dept of Health and Human Services the Dept of Health and Humiliation! I think that is a much better description.
I read other posts and hear all the time about how much help some people get and though I am happy for them, it just doesn't seem fair that some have to fight so hard for every little thing. Our experience was much like yours, they would give me only 4 hours a week and told me I needed to place Lynn in a nursing home. Our Case Manager was wonderful, but her hands were tied by "our stingy state".
I can't believe they wanted to take away a day of Sid's daycare. Damn, how cheap can they be! I am glad you stuck to your guns. I am one who is a firm believer in stimulation for our loved ones.
I hope some of the stress has lifted Joan and I hope in time they will offer more help for you. ((Hugs))
I am saddened and disgusted to read from you and others that what Medicaid has put me through appears to be the norm rather than the exception. For your sister to call it the Department of Health and HUMILIATION means that it is across the board policy to degrade the most vulnerable.
Sid and I worked hard all of our lives, paid taxes like everyone else, and did not begrudge the truly needy the help our tax dollars provided.
As the saying goes -"There but for the grace of God, go I". So we had a reversal of fortune, now need the help from the system we paid into for 40 years, and are treated like scum. Not by my case manage, but by the "system".
Read A Selfish Pigs Guide to Caring. The author is English and his wife has/had Huntington's disease. Is book is intended for navigating the emotional aspects of caregiving for any reason, not just dementia. His opinion is that the State, no matter what country you live in, will give the caregiver just enough resources to continue to care for their LO at home.
What you wrote is important and needed to be said, but at the risk of starting class warfare here, I have deleted it, and ask that you post it on the Alz. Spouse group on Facebook. ( I have saved it, so if you don't have the exact words, email me at joan@thealzheimerspouse.com, and I will send it to you.
Joan of course I am relieved you are getting some help, but saddened at the whole process. Though my experience with Medicaid is not a walk in the park, it seems like a miracle compared to others.
I just got one of those comments the other day Nikki, from one of those high nose people, about how we are are getting helps should have to pay it back. If that happened a year ago, I would have freaked out. As it was, I just ignored her, mostly.
Joan I sure hope this all helps with your help and mental anguish. Giant hugs to you too.
IMPORTANT MEDICAID INFORMATION ABOUT NURSING HOMES:
Although your Medicaid provider does not want you to know this, YOU DO NOT NEED THEIR PERMISSION FOR NURSING HOME PLACEMENT. Just because they denied Sid NH placement does not mean that he can't go. If I could afford to live without his SS or live on the little they would allow me from his check, I could place him in a NH if the doctor and the NH agreed on it. You then need to disenroll from the home Medicaid program and enroll in the NH Medicaid program. They allow you 3 months in the NH under "pending Medicaid", which means that you don't have to give up the SS during that time. However, it is retroactive once you are approved.
I found out about this from the NH's I visited, not my Medicaid provider.
Joan, I am thankful that I never had to deal directly with Medicaid. When I went to fill out the papers at the Veterans Home for what I thought was going to be respite (but then 2 weeks later it was to place him) the Financial Director looked at my bank statements & right away told me that I would have to apply for Medicaid. She told me to fill out as much of the paperwork as I could & get all the documents that I needed & then one of their Medicaid specialists would help me get it all together & submit it for me. They couldn't have been more helpful. That put classified Tom as Medicare pending. Well that was last October & he is STILL Medicare pending. It seems that the State Medicaid person who approves the application was dragging her feet on approving anyone who was submitted by the one lady at the Veterans Home due to a personal conflict with her. So unprofessional! Right now I am only paying the Home the amount that I would pay IF Medicaid is approved. However my bill reflects the extra amount I would owe if Medicaid is NOT approved & let me tell you there is no way I could come up with that amount of money. As it is I am having a hard time coming up with what I do owe.
Joan I m glad that you are able to get the extra help now, but as everyone else said, it's not enough!
Hello, My beautiful friends... I, first spoke to all of you about my nightmare with Medicaid... Hard what they do to us....I am still trying to work out my mess....John died on 1/19/13. I really thought....that part of the Nighmare was over. Not so...... Medicaid is trying to get back.... Yes, a lawyer who understands most of it all. They still believe I have some money (not a lot) in a retirement account...which I can not touch. Medicaid thinks they are entitled into any money they can get ahold of. Newbies....find a good lawyer. I did...and still Stay strong!