It's been probably a year since I've looked at this board. Not because I didn't want to, but probably because I didn't want to accept the fact that I was facing a very frightening situation. Well it's here. DH was disagnoised with Early On Set Alzheimers July 2007. At that time I was still working and was up until September 2nd of this year. The disease has taken over and I've come to realize I am fighting a war that I will not win. I am scared to death at this point. The love of my life is only 55 now and I'm 52, who would have imagined this? I've sunken into depression and fear everything and everyone. No one tells me the same thing. I am the only one caring for Rick. His kids live out of state and my youngest who lives the closest tries her best, but she's a college student working and trying to put herself through college. I cry in private, as I just can't let Rick see me weak. We are surviving right now on his SSD and his small retirment from 30 years of service at a lumber yard. I was informed last week that if I don't return to work by 12/1, I will be laid off. I didn't need to hear that, but I understand. I've been on a waiting list for a bed at a facility, I called today, but still no bed available. I know we could survive on his income for a bit, but what do I do after he's been placed in a home? SSD and probably his small pension will be considered a Share of Cost for his care, as medi-cal will pick up the rest. What do I do with a mortage, bills, daily living etc and no job? When we were last seen at UC Davis in July, we would told that he would not been seen there anymore, there is nothing else they can do at the clinic, he is beyond any clinical trials etc. They do some type of testing at each visit. The first year it was 18/30, a year later 13/30 and this last July 7/30. They determined him at this point to be in the last stages of Alzheimers. They said roughly within 6 months there would be a huge downward slide. 3 months into it and it is happening. I just want to scream at the whole world. I guess I'm just rambling now, but still I don't know what to do.
Raeannholbrook, my heart goes out to you. Even tho we are in the same situation (trying to make it thru this horrible disease with our dh) my dh is not to the point that yours is yet. But I have been where you are with the mental issues. I have screamed at the world and still did not know what to do. I still do ramble alot, but so what. We deserve that. We are loosing the person that we love and it feels that a part of us is leaving also. We are helpless to win this fight. I am glad to see that you are back here, this is a wonderful site with so many people with so much knowledge. I am some what of a newbe here but soon someone with lots and lots of knowledge will come along and read your post and be here to help you. I just wanted you to know someone is listening. I am praying for you as I write, please keep posting and I am sure help is on the way...... hang in there girl...... God Bless you in your time of worry......
I am so sorry you are in this situation. AD is bad enough, but everything is made worse when there are financial issues. If Jane does not see this on her own, I will write to her to let her know - she is our resident expert on money issues related to SSI, Medicaid (I guess it's called Medical in California). I know she will have good practical advice for you.
I don't know if this will help you, but copy and paste this link to a recent blog I wrote about getting help with finances - http://www.thealzheimerspouse.com/Financialstress.htm
As for the emotional strain - it's rough - we all understand your fears and anguish. We are here to offer emotional support even if we can't solve your problems.
God bless you and your DH. Prayers for you both. There are so many great people here. I'm new but I've been doing a lot of reading and what I have seen is great and I've learned a lot.
Raeann, My heart goes out to you. It's terrible that your husband -- so young -- is declining so quickly.
You have said little about coping with him on a daily basis, are you all right until you can get him placed? Is the place where you have him on the waiting list the only possible one for you? Perhaps a different facility would have room sooner. I hope practical advice will be here soon to help you.
Raeann, I know the feeling of being suddenly being forced to deal with the financial situation. If you have sunken into a depression (that happened to me for the 1st time in my life when I discovered my husband had day traded our retirement fund and he wanted to sell our home to get money), I would suggest that you go immediately to your doctor for an antidepressant. When you are very depressed, you can't think straight, and all feels overwhelming. Within 2 weeks of my doing this I was able to at least get my mind going again. I am very sorry you are in this situation, and I know the fear you must be feeling. At least an antidepressant will help you cope. And I do hope Jane posts here for you. She is an expert in the finance department. My sincere thanks to her for helping me understand my situation.
raeannholbrook, I am NOT and expert by any means of the term, just a person like yourself offering you some things to think about. First, at your age of 55 I would hold on to that job no matter what, if it takes paying an outside agency the complete amount of your paycheck to care for your husband until he can be placed, you will at least have your job to carry you through this. It is the first most important thing you can do.
Next, I would contact his Doctor and see if the Doctor can hurry the placement process for you. With no one to care for your husband except you and you having to go back to work I would think they could use this as a reason.
Next If you have any assets to save you need to get to an Elder Law Attorney pronto.
Second just in case you do not know, If your own income is less your State of California will allow you up to $2,739 per month of your husbands income after they deduct his personal needs and Medical Insurance from his income, if he has that much left they allow you the community spouse that much to live on. This amount is what they will bring your own income level up to if you yourself do not make that much. The problem with this picture is you have to live once he passes on and then that income is lost to you as you cannot even draw his Social Security until you are at least age 60 or disabled yourself, you must salvage your job.
I hope this helps just a little bit. Just remember I am just offering you things to think about, what you do is up to you.
As Health Care Reform will be coming, I do not plan to stay versed in the changes that will occur. My husband's decline does not allow me the time nor do I want to.
The last and best suggestion I can make to each person who is faced with the Long Term NH Medicaid maze is to see a good Elder Law Attorney versed in Medicaid, no matter if you think you need to or not. There are many legal ways to salvage assets for a spouse left at home and without this expertise help you could loose out. I will no longer offer suggestions versed on the past as the new changes will be changing many things.
oh, dear, Jane - I looked at the changes as described in the AARP paper on this, and didn't see any red flags.
I think what everyone needs to remember when you or I or others say SEE AN ELDER LAW ATTORNEY is that we are NOT NOT NOT encouraging people to use ways to evade paying for what is owed. NOT encouraging people to find ways to hide assets or the like. Simply saying: these are the perfectly legal ways to take care of your own interests as well as those of your spouse.
Throughout our lives there are ways to save money, or not. Shopping at Costco, for instance, allows us to buy staples more cheaply than from the corner 7-11. This is legal. But you have to KNOW about Costco to do it. Using the internet to scout for the cheapest airfare is not illegal, it's common sense. Thus knowing what will be allowed in the medicaid maze, as you so aptly put it, is simply common sense. The most crucial thing about all this to know is to talk to an attorney WHO SPECIALIZES IN ELDER LAW!! Just as you wouldn't want your PCP performing heart surgery on you, your cousin Phil who is a real estate lawyer is not the person to talk to. Neither is that nice lawyer who helped set up Aunt Susie's family trust.
I agree, we have to be very very careful at this point that we don't get ourselves into situations that will work against us. I understand why you, Jane, are reluctant to talk any more about specifics.. But please don't stop posting! You have other facets of your life and your experience that can benefit us all - and maybe we can help YOU TOO!
briegull, I did not mean that I would not post on the site. I just mean that with Health Care reform coming, changes could take place that I would not even know about if I do not stay versed in the rules and I don't plan to do so, my husband needs me more. I always have said "I am not an Expert." I just want people to know that there is help out there and it is all Legal, just go to an Attorney who knows these things. People are beginning to think I am an Expert and I am NOT. I am just a person like yourselves but I can't stay up and informed on each person's situation.
Jane, I agree with briegull. Please don't stop posting. We can all benefit from each other's experiences. I understand your not having the time to keep up on all the changes in the health laws. But - stay for other contributions you might make and/or need! Appreciate all you have done in the past.
Jane, even though I didn't have to use any of your wonderful help, I did gain lots of information to pass on to friends....particularly the advice to always contact an attorney who specializes in Medicaid eligibility.
Jane: Thank you so much, I've been waiting for you to post. I wonder if you could better explain your comment: "State of California will allow you up to $2,739 per month of your husbands income after they deduct his personal needs and Medical Insurance from his income" What are personal needs? What do you mean by Medical Insurance? Rick is on SSD and has a small pension. I've been told that we qualify for Medical-cal to pay for his long term care, however, I will be responsible for a Share of Cost. I was told this when I was working. I also was told the state wouldn't leave me with nothing as you had stated. He is a senario: If I stay home with him and care for him until the bed become available and I have no job and his income is 3000.00 how does this all work? I know your no expert, but I need some explaination. I have many issues to deal with and I need to make decisions pretty soon. I understand what you are saying about keeping my job. Here's this problem. Where I live in home care is 20.50 per hour with a 4 hour min. Okay thats about 160.00+ per day. This is more than what I make in a day. I cannot use Ricks income to offset this because that is what I'd use for your mortgage, household bills, etc, you know regular everyday living. To make matters even worse, my father was diagnoised with Alzheimers 2 weeks ago and my 81 year old mother is trying to care for him and she herself is somewhat disabled. Here's the kicker, I'm an only child! I'm torn and I can't be in two places at one time. I'm thinking once a bed is availabe for Rick, I'll be heading down south to take care of my Mom and Dad. This whole thing is a huge mess. So, I have to decide on what to do, sell my home, (good try with this market, but would need to get out from under the mortgage, weve only had this house about 8 years with a 30 yr mortgage), Rent the house etc. You see my delima. All of this is stressing me out to the max. I've not been comfortable with myself for the past 2 weeks now. My stomach just churns because I'm not sure what to do next.
((Raeann)) My goodness, so much for one person to try to deal with. I have no advice to offer on the finances, but I do agree an elder law attourney is who we all need to see.
I am so sorry to hear about your parents situation. If you go to take care of them will you be able to visit with Rick? Do you have children who could help care for him? I imagine you must feel very torn! My heart goes out to you. I will be keeping you in my thoughts and hoping you get some much needed peace and relief. ((hugs)) Nikki
raeannholbrook, Ok let me try to explain this process. Your husband draws $3,000 per month some States allow his personal needs to be $60.00 per month after placement and others only allow $30.00 per month, then they also deduct the amount he is paying for his part B Medicare premium, drug coverage, and any other health insurance that he now has. They deduct these things from his monthly income, the amount he has left up to the $2,739 per month that they allow the spouse at home is where this comes in. Say your income is $2,000 per month, his deductions are $200.00 from the above sources that I have mentioned,that leaves a total of $2,800 of his income that can be used to bring your $2,000 income up to $2.739 per month so they would take 739.00 per month from his income and give to you in order to make your total income of $2,000 per month equal $2,739.00 If you have no income and the amount they deduct from his for personal and medical is only $200.00 then he would have enough left to let you have the full $2,739.00 per month.
I don't know when you talked with the Medi-cal office but as of March 2006 your State follows the income first rule, meaning that they will count your income first before allowing the extra monthly from his and also not allow you the choice of taking a different approach. You are also allowed up to $109,560 of the countable assets if you have a total of $219,120 and if you do not have that much then they will allow you half of what you do have. Your State does allow a spousal annuity for which you do need to see an Elder Law Attorney. Your State goes beyond probate in estate recovery which is another reason you need an Elder Law Attorney. My best advice to you is SEE AN ELDER LAW ATTORNEY PRONTO
Jane: Thanks again for clarifying, this is basically what the agency I am working with told me. When I went, I was so overwelmed with everything being shoved at me that I remembered parts but not all. It's really way too much for a person to take in and process in one or two settings. I did call again yesterday, however, the person I needed to talk too was out of the office. Figured I'd have to go through the whole weekend stressed out. It's like getting a tooth ache and no dentist until the following Monday. I do have one other question you may be able to help me with and get me through the weekend. If Ricks income 1000.00 is retirement pension and 2000.00 is SSD, for a total of 3000.00.... If I'm not working and after all their deductions personal needs, part B, Drug etc is deducted.....and what is left is approx 2700.00 (as you mentioned above), a majorty of this amount is his SSD, are what you are saying is that it doesn't matter where the funds are coming from or will they take the SSD and then allow me what is left. Hard for me to explain, but I think you get my drift.
Oh I just remembered one thing. I do have Part B for Rick as well as the Perscription Drug, but I also have Supplemental Insurance. Do I keep the supplemental Insurance or does Medical cover the costs that Medicare doesn't in the event he has to go to the hospital? They told me to get supplemental insurance, so that should he have to be in the hospital, medicare would pay and this supplemental insurance would pick up and I wouldn't have to pay anymore out of pocket.
Sometimes if you are payee representative they will not allow any from your husbands Social Security to be directed to you and sometimes they will, it will depend on the caseworker. Just keep your fingers crossed that they do. I am thinking they will. What did your case worker tell you when you talked to them about that?
Also have you already applied???? if so you need to ask before you sell your home especially if it is still in both names.
Most States will not allow you to drop any Health Insurance coverage you have on the person, it causes the State to have to pay more.
I can't thank you enough for your insight. Now I know the questions to ask. I'm not clear about what you are talking about when you say "The problem with this picture is you have to live once he passes on and then that income is lost to you as you cannot even draw his Social Security until you are at least age 60 or disabled yourself, you must salvage your job.". I understand once he passes the funds will be lost, but I don't understand what you mean about not being able to draw HIS Social Security until your 60 or disabled.? I didn't know I could draw his SS and if so at what age? You see I know really nothing, I mean at 52 who would have thought I'd be having to deal with this?
How long have you been married to Rick, this really should not matter unless divorce were an issue. If your husband dies you can receive widow's benefits if you are age 60 or older. If you are disabled then you can get a widow's benefit as early as age 50.
the amount you would draw will depend on your age when you start drawing. and it also will depend on the amount your deceased husband would have been entitled to receive when he died. The usual Widow benefits range from 71 and one half percent of the husband's benefit amount if they begin at your age 60 or 100% if you do not draw until you are 65 or if your normal retirement age is 66.
humm, either 11 or 12 years BTW, the house was signed over to me and has been recorded with our county. The only thing is we couldn't do anything about the loan, it is still in both our names.
Even if the house has been signed over to you do not sell it until he has been approved or else that could cause more assets to be counted, the house is not counted but if you sell it before he is approved then the liquid funds would be countable.
Okay, I've written everything down, when I talk with the person helping me with all this on Monday, I'll know what questions to ask. I'll let you know what I've been told.
I'm so very sorry--I just don't kow what to say. You are both so young. Is there a possibility of getting someone to come in and stay with your DH until a bed is available. That way you might be able to salvage your job. Just a thought.
My prayers are with you and your DH. Best of luck to all of your family.
Mawzy and everyone: I know many of you have said "get someone to come in and sit with your DH so you can return to work". That is easier said than done. Cost for this service in my area is 20.50 per hour. For 8 hours that is 164.00 per day, 820,00 per week and roughly 3280.00 per month. I don't make half that in any given month, so what is the use. My biggest delima is I have no family here, all my family is further south. DH has a father and sister here in town, but they are really of no help. His father says it depresses him to be around my husband and his sister works full time and if I am lucky she will bring him one day a month to give me what she says time to myself. What I find myself doing is sleeping! So I don't get out, even to get to the quilt shop or anything. I want to move closer to my daughter or my parents (father was diagnoised with AD a couple of weeks ago and I'm an only child, Mom is 81) Talk about jumping from the frying pan into the fire. I can't seem to get away from it right now. Trying to figure out how to get DH in a home closer to those two areas is a problem in itself. I hope to know more on Monday when I get a call from my case worker, perhaps then I'll have a better idea of what I can and can't do at this point. I have questions lined up and will have pad and pencil in hand to take notes. I fear my job here is out of the question due to my wanting to move closer to my family.
When I said south, I ment south of me. I live in Ca, about 2 hours from the Oregon border, my parents live south of San Francisco about a 6 hour drive. Thanks for your concern, inquiry.