I haven't been on the boards for some time now. I just feel so overwhelmed with everything going on. In July of 2008, my husband was diagnosed with moderate AD and I guessed he was at stage 4. It is now October 2009 and he is in stage 6. I am getting sucked up alive in this disease. I help my DH dress himself now, I shave him, I brush his teeth, I try to bite my my tongue when he blames me for things disappearing. He is so suspicious now and he has started hallucinating. He wants sex 20 times a day and he is on me like a fly to fly paper. I can't go anywhere without him looking over my shoulder. I cry at the drop of a hat. I can't concentrate at work. I hate this disease!
I realized a few months ago that I was killing myself. I was not taking enough breaks and I was eating myself to death. I've tried to get focused and I have lost 21.5 lbs. I'm feeling better now but I'm still tired all the time. I finally went to see the doctor yesterday and they are now prescribing anti-depressants for me and valium to relax so that I can sleep. I moved out of our bedroom yesterday but still didn't sleep well. My husband was up most of the night again -- this is usual. He called me 7 times on the phone and left messages for me. He walked into the spare bedroom a couple of times.
I know I'm rambling but that's what I do best now. I have decided to place my husband in an ALF. I can't do it until I sell my home and now I've got to get it ready to sell. I've decided to put it on the market in the spring. I know many of you have gone through this already and some will be soon. Is there anything you can recommend for me so that I don't go crazy?
WOAH!! Don't sell the house. That won't help. Wait till Jane comes on and tells you what to do but if you have time right now, research an elder law lawyer and get in to see them ASAP!
i agree with briegull you may not have to sell your house to get him qualified for placment. you do need to see a medicare specialst elder law atty and get all your questions answered prior to making any rash decisons. we tend to make dramatic decisions when under so much pressure. i think the antidepressants and xanax will relieve some of the stress. i would also suggest a tweak on DH meds as well. the sexual issues can be resolved as well as the shadowing with increases or changes in medications -call his dr and explain what you have written here and tell him you need help with controlling DH ansiness. we are here for you anytime. divvi
Ok, I'm breathing. I did see an elder care attorney last year. We weren't able to get my husband qualified for Medicare to pay for ALF. His income was $168 more than their cap. We are also in the situation of not being able to get him qualified for medicaid yet or possibly at all. I do need to see him again. Last time we met, he wanted us to move DH's 401K and my 401K into an irrevocable trust. I couldn't do that witih DH's because of how hard we would get hit with taxes. I'm still working so I can't do it with mine either. DH turned interest in house to me. I just don't think I can take care of this house by myself. It is too much house for 1 person. I can add up DH's social security + pension + 401K for 15 years (must moved into a 15 year fixed payout annuity) to pay for assisted living. I'm planning on living on my own income.
I will wait for others to chime in. I thought I had overturned every stone but I may not of.
I agree with divvi about checking what medication for your husband will help with some of the issues. If you can resolve some of his problems, you'll have time for your antidepressants to kick in before you have to make any major decisions. I hope you will be able to stay in your house. Trying to get it ready to sell and to sell it while dealing with everything else that's going on sounds overwhelming.
Diane, yes, please do talk to your husband's doctor re: medication to help with the suspiciousness, hypersexuality, hallucinations. This is a must. The hallucinations could be dangerous, depending on what he thinks he's seeing.
I will follow up with his doctor. They just put him on seroquel (for hallucinations) as needed but I can't give it to him when he takes his trazodone (for sleeping). Right now it feels like either I can get some sleep or I have some resemblance of a life.
Jane - I live in WA state. I used the Alzheimer's assocciation + other websites to determine that he is stage 6. I know it is just a guideline and everyone is different but he seems to be exhibiting every symptom identified. His doctor says moderate stages.
Diane they sometimes call it moderate right up to stage 7.
There are other scales. Look for a few of them that cover behavior and the ability to do life skills. They discuss what you have found with his doctor.
DianeT Thanks for the info. The reason I asked how you were staging him was to help you determine if he would most likely qualify MEDICALLY for Long Term Nursing Care. In most States if the patient is unable to do two of the Daily Living Activities then they would qualify MEDICALLY. If he does and you can get the Medicaid approval then for Long term care they would allow you the spouse at home ONE HALF UP TO $109,560 OF THE COUNTABLE ASSETS. This of course does not count the home, one vehicle and other non countable items. They do not allow you this much if he is not in long term care.
As far as Assisted Living Medicaid I am not versed in the rules or qualifications. I only deal with the Long Term Care aspect of Medicaid. It appears to me that he would qualify Medically for long term care, you would be allowed more to live on and not only that but you would not want to sell your home until AFTER he is approved. Then if you downsize you would still have more to live on, it would not be counted if you sell and it is in your name only, AFTER he is approved for long term care.
The thing that concerns me with the purchase of an annuity Diane, is this. He will not always be qualified for Assisted Living as this disease progresses, if by chance you have to move him to a long term care facility and have purchased an irrevocable annuity you would run in to problems if it happens before 5 years unless it is a qualified one for the spouse left at home. Be careful. My take on this is get him into a long term care facility where he will not have to be moved as he progresses especially if he is already in stage 6.
I have never voiced much of an opinion when folks say they are ready to place, it is up to each caregiver and depends on how hard the loved one is to care for but I can tell you in a heart beat minute if mine was doing what yours is to you I would already have done so.
My heart goes out to you. If I can be of further help please let me know.
Thanks for all the information to think about and offer for help Jane. I know we make too much money to qualify for programs out there yet I can't pay for two separate households (mine and ALF for husband) without some drastic changes. I will see what I need to do to get him qualified medically for long term care. I can always wait to sell the house. It isn't a big deal as long as my dh is here at home.
I pretty much have decided an irrevocable annuity won't work for us. I have taken my husband's 401K and rolled it over to a different provider. It is now in a 15 year fixed payout annuity. This should allow me to pay for an ALF for up to 15 years. If my husband is like his parents, they both passed away in their early to mid 70's, we should be OK financially. If he passes before I do, the remaining money will be paid to me. If I pass before he does, a trust will be set up to take care of him.
I too don't know when the right time to place someone and each person has a different situation and needs to make that decision for themselves. I just know that the stress is not doing me any good and that I don't have much patience anymore. Everyones heart felt wishes and hugs are appreciated. I wouldn't wish this on my worst enemy but there is some comfort knowing that other people know what I'm going through.
Diane T, Great that the annuity will pay for ALF for 15 years but do remember that the ALF may not keep him when he reaches a certain stage, hope the annuity will pay a long term care for 15 years. In most states the IRA annuity that you just purchased will be income to him, it will as you say go to pay for the ALF. If you apply for Medicaid long term care then when your husband dies they will take the amount left over in the annuity to pay back what they paid for him, so don't count on the remainder of the annuity to go to you no matter what the plan says. This is just IF you apply for Medicaid. That is why they call it estate recovery and they do go beyond probate in your State.
I hope things go the way you hope and plan. I would do my best not to apply for Medicaid in your situation if the amount in the IRA is great, just pay for his care if you can. Although Medicaid does not count the IRA assets in the annuity they do count the income and then the remainder of the assets up to the amount they have paid once he dies.
This disease is such a long one, unless he has a lot of other physical problems he could last much longer than he would qualify for ALF. Don't mean to bring bad news just thought you should know this.
I'm reading these things with great interest because I was told shortly after DH's diagnosis(2005) that his retirement benefit was too 'high' and that he would never 'qualify' for medicaide. We have long term care insurance and it will pay a certain amount per month (after the first 3 months of placement) for a period of FIVE years. ( I think it pays 100/day).. So here we are.. I've hired Home Instead agency for 2 days a week.. DH doesn't actually physically NEED hands on care. He needs supervision and assistance with medications, food preparation, and etccc.. Right now its ok financially BUT the out of pocket cost for just two days a week is going to be over 1000/month.. I've tried to think through..using our savings and increasing the days for home care as they are needed, trying to preserve the 5 years of LTC insurance as long as possible.. until we've used up all our savings. Golly..and yes, I don't think I can manage the upkeep of this home AND travel back and forth to the assisted place 45 miles away either but I don't want to SELL our home (homestead).. Thoughts just twirl around about these things..Joan's move to a 'Villa' arranagement seems ideal but not sure if it would be possible for us..OR if we could afford it if it was possible.. Thank you all for your wisdom and valuable valuable information. I guess he's edging into stage 6 now.
Judy-have you checked with your LTC to see if they will pay for care at home. Our Genworth policy will. In fact home care goes to satisfy the 100 days before placement payment kicks in.
Judy, I know I, for one, never in my wildest nightmares thought that we'd someday have to consider medicaid. We couldn't ever get LTC for my husband (we tried) because of his chronic phlebitis.. but we had/have a good pension, mine's almost as much as his, we're used to living on mine alone.. and yet his income is HALF of what would be required in a nursing home. Savings might last a year or so.. no more.
Jane, do you know the percentage of residents in n.h.s who're on medicaid? I think I heard the figure 80% but I'm not sure...
Is it just me, or is it true that Medicaid nursing homes are not as good as the private pay homes. I visited several a few months back and of the three, one took medicaid. It was on the list provided by my church. It was a night and day difference when I walked in the door. It smelled bad, the staff members I saw were not nearly as 'neat' as the other ones and all in all, it left me feeling so sad and depressed. Maybe it was just that ONE out of thousands that are great, but I understood they were all very much the same as private pay. It smelled awful and the furniture was worn. That visit left me "at wit's end"... worrying if the day would come that it would be our only option. Hospice told me that the small homes were wonderful...the ones that take 6-8 residents. Better attention, better care, loving caregivers because they get to know the residents so much better.
My husband is in a facility that has 64 beds. 2 of those beds are private rooms and private pay, the rest are Medicaid beds. The place is clean, bright, NO SMELL, and the nurses and aides are wonderful. Guess we were really lucky.
briegull, our LTC will pay for in home care...half of the amt allowed for residential care.. (50.00/day).. but it also counts as part of the lifetime maximum (5 yrs). My understanding is that DH will NEVER ever quality for medicaid..and his income, as you said, Bluedaze, will also just cover about half the cost of the nearest assisted living facility. Fortunately, we got LTC insurance before we each retired. I'm thankful that we do have savings right now..but it is almost like.. is it wiser to place DH sooner and take advantage of the LTC or try to hang on and pay out of pocket as long as possible before starting the 5 year clock? I would go through all the various hoops if I thought medicaid was an option at any point along this road but unless the maximum income limit has been raised, I think it would be useless. Our local nursing home does accept medicaid but has no secure dementia care unit..DH will be an escaper.
Judy, do you live in an income cap state???? Tell me who is telling you that you will never qualify for Medicaid long term care? what State do you live in???
Lets look at the whole picture here. You have to preserve enough of your assets to also care for yourself, this may sound selfish but after all you both worked a life time for what you have, it is an unfair system that takes the complete savings and leaves one person out in the cold when the other has a long disease as Alzheimer or any disease for that matter. I would say great if they would allow the spouse at home half of what you have worked for but you have to go through legal loops to even get that.
Don't go through all your savings until you check out the truth in not qualifying. I find it hard to believe that he would not qualify if legal avenues are taken to help with it. Let me know what State you live in, I will know if you are income cap and then we will talk.
Hello Jane, I'm in Texas. I talked to a lawyer about this shortly after DH was diagnosed. We each receive Texas teacher retirement benefits and social security which is not very much because in Texas, public schools don't contribute to SS.
I looked into Az NH care and found it to cost around $6000.00 per month. I also found that I can get in home care for $15.00/hr 4 hour min per day. Our LTC insurance will pay $75.00 per day for either. So I guess we will go with in home care for as long as we can. My wife still does not qualify at this point because she only needs help with 1 of the activity of daily living not 2 that is required by the LTC insurance.
Judy, You must not have gone to an Elder Law Specialist, did you? Your State of Texas is an income cap state but they do not count YOUR income, only your husbands, if his income is $2,022 or more for the year 2009, they increase this each year, right now it is $2,022. If his excess income above the $2,022 is placed in a Miller Trust, this money can be used for him outside of what Medicaid allows. It has to be set up by an Elder Law Attorney.
So this tells me that each of your incomes is more than $2,022 per month. In this case they will still allow you the community spouse up to half of your other countable assets up to $109,560. And also your husband would qualify if his excess income is placed in the Miller trust, so YES, your husband could qualify for Medicaid. You really need to see an Elder Law Specialist.
Yes, Jane, I only spoke to a regular attorney who looked up some information and told me. I do need to see an Elder Law Specialist I guess. DH's retirement plus his social security is about 2500. or maybe 2800. Mine is half that..as I didn't teach as long as he did AND because I taught, I forfeited half my social security benefit. His income is higher.. I would probably qualify for medicaide..Fortunately, because he worked at a higher paying job AFTER retirement from school, we were able to save..but once its gone.. that will be it.
ANYWAY.. thank you so much for bringing this to my attention about the Miller Trust. I certainly appreciate your information and will find an Elder Law Specialist.
Judy, until your husband Medically needs long term care he will not qualify because of that, but once he is Medically needy then with the Miller Trust he should qualify. See an Elder Law Attorney and then you can make a better decision on how to handle the funds you have saved. I do not know your age but no matter what you need that nest egg in case you out last your husband and live for years.
You will be able to make better future plans if you do this. To be Medically needy in MOST states he will need assistance with two out of 7 daily living activities, such as bathing, eating, toileting, walking, etc.
I met with an attorney yesterday. Showed him our financials.. Income.monthly expenses.assets etccc.. He talked about the Miller Trust.. says we are 'in the middle'.. not poor enough and not rich enough..duhh.. whatever that means.. Evidently the miller trust would set aside all of husband's income for nursing home care. No matter what we do, he won't qualify for medicaide. He suggested we include the expenses for DH's home care for a deduction on income tax.. which might help. Hadn't thought of that either.
He suggested instead..to reduce all unnecessary expenses..farm expenses and my art studio expense is a first step (ouch), then when DH is placed, (this is without the Miller Trust etc.) invest or save the amount of money I'd be spending out of pocket during the 5 years LTC was paying.. It makes sense in a way, if I can do it. . So that after 5 years, if DH was still in a facility..I'd be able to pay for his care. He gave me the web addresses for the Premack website ( an attorney specializes in elder issues)..and the medicaide website. Does any of that make sense?? I can sell my studio property in town (ouch)..sell our home to our son..and attempt to buy something closer to whichever facility DH is placed..or rent an apt. or something? Its a muddle..and its hard to think about selling my studio but for all practical purposes..I can't use it..and if I'm going to move when DH is placed..makes no sense to keep it. Wheweeeee.. I don't have to do any of it today though.. which is a good thing..
Judy, Was the attorney you saw and Elder Law attorney? I have no idea what a Miller Trust is. We saw an EL attorney a few months ago and I don't remember her telling me any of the things you have been told. I have most of the ducks in a row the only thing I would need to see her again for is IF DH needs to go into a nursing home and at that time she would take care of having Medicaid pay for that.
Perhaps you could search for Elder Law Attorney on this site and read Janes posts.
Judy, It is not your income that is disqualifying you it is your ASSETS. I had understood you to say in your first post that it was because of your income that you would not qualify. The ASSETS are the problem not the income. I am sure your Elder Law attorney told you this??
In the beginning when I spoke to a laywer about this.. he said that DH's retirement income was too high and he would never qualify. We do have savings and property. So this time, he looked at everything..and I tried to list EVERYTHING including farm equipment, savings etc.my studio property and then, our homstead which isn't all that huge considering things.. SO, we are 'in the middle.. but I will try to find out more.
I wish he HAD explained that it was the ASSETS.. The only property we own other than our homestead is my studio property in town.. The way I comprehended it..was that my husband's retirement income is above the limit so that seemed to be IT.. He did say that the Miller Trust had to be used for his care and could not be used for anything else. Possibly that is where I would be in greater difficulty since my income is half that of his. He did suggest that rather than an elder attorney, I needed a financial counselor. to help with things.. Heavenly dayzeee.. This fellow's father had alzheimers.. maybe he wasn't that involved.. I jsut don't knowwwww. I do sincerely welcome any and all suggestions.. I will also visit the website for the attorney Premack in San Antonio.. This shouldn't be rocket science..but maybe it is..
Judy, Forget the financial advisor. You need an Elder Law attorney who knows everything about saving your money and property. I didn't think the one you saw was an EL from the things he told you. You have nothing to lose by seeing one who knows the law and Medicaid and you have everything to gain.
Judy, The Miller Trust is used to bring the income down to a level where the income would not disqualify your husband, and yes it does have to be used for his care, but by using the Miller Trust to bring the income level down this causes his income not to disqualify him. Then there is the Asset issue, if you have more countable assets than they allow that is another reason to disqualify you until you of course spend them down.
A good Elder Law Attorney knows the legal avenues that allow the ASSETS to be placed into non countable assets and therefore qualify you. Spousal Annuity etc.
The reason for a Miller Trust in the first place is so that the person's income would not cause disqualification.
This makes perfect sense, Jane. Thank you so much! I will find an Elder Law Attorney somehow. Before making the appointment with this one, I thought I had explained our situation well enough that he either would be prepared to help me DO something or refer me to someone else. Then after looking at our collective resources etc.. it was nearly like the trip was wasted for all practical purposes. Since we were in the 'middle' not poor (yet) but not wealthy (enough). At any rate, again thank you for repeating these facts in concrete terms. I can grasp concrete much easier. Will keep at it till we get something figured out.
I'm new to this particular board (have posted on the Assisted Living board a month ago), but have just read through the previous comments and can only echo all who are recommending an attorney specializing in elder law you you, Jane, and to anyone with any questions about finances and planning. That is absolutely crucial. As my wife is moving from early stage to moderate stage EOAD, we are already in the process of checking out ALFs. The point at which any spouse/caregiver must consider a decision to place in an ALF or nursing home is such a highly personal decision ... what works and feels 'right' for for one won't necessarily work or 'feel right' for another. But to anyone who is even considering such a decision, definitely seek out the advice and counsel of an attorney who specializes in such matters ... and do it early on so you can prepare to do whatever you may need to do with your assets and income to make it happen in a "less painful" way, financially.
Just one more comment ... I'd strongly suggest to those considering a reverse mortgage to also consider a home equity line of credit as a different option. Not a home equity loan, which is something quite different, a home equity line of credit (HELOC) give you great flexibility in both borrowing and repayment. You should check it out!
I would also suggest getting your spouse's name on the waiting list at a nursing home or Alz care facility, even if you don't believe you will need one for a long time. I put my DH on two waiting lists well over a year ago with the understanding that if we weren't ready when his name came to the top they would just drop his name down one and call for the next opening(s). I didn't really think we would need it, but I put his name on "just in case". Well, we are now more than ready and his name is number three at one facility and number one at the other. So, it never hurts to plan ahead, even if you think you may never need it.
Jane and Judy, Your comments were very, very helpful. I don't even know what a Miller Trust is! But I will check it out. I wish I could even get my DH to see a lawyer, as he is already suspicious about what I would do about our assets when he dies. Nice hearing the things he says after 51 years of marriage.... I know he would never say these things if he were not in the condition he's in, but it still hurts. It's so difficult to keep swallowing the words I want to say to him on some days. But, it's, as I said before, extremely helpful to read some of the things you ladies are talking about.
We went to an EL attorney several months ago but DH doesn't remember going now. At least we went when he was still able to agree to what the lawyer said and sign his name to all the papers. Jane was a huge help when we were going through this. Thanks Jane!
Babozek, type in the words MILLER TRUST in the keyword line at the top of the page...(not inside Alz.Spouse - above that!) right below the Tool Bar... and then type GO, and you'll read about Miller Trust. It is DEFINITELY not for us in Texas. - so type in Miller Trust in ____________ (your state). Each state is a little different. Of course you will need to discuss it with a lawyer if it looks like it might work for you.
Nancy B Why would you say the Miller Trust is not for those in Texas? Texas is an income cap State, and yes the Miller Trust can be used in order to keep the income from being over the allowable. That is not to say everyone would want to use it but for those who do need to the Miller Trust is absolutely one way to keep the person from being disqualified.
The Miller Trust is only for those States that are income cap and Texas is certainly that.
Jane, I said US, my husband and I. From what I read, our total pension income( Company + Social Security) exceeds the maximum allowed. I didn't mean EVERYONE in Texas. I was referring to the two of us. I typed in Miller Trust/Texas and I felt it would take 100% of all monies that come into the house, leaving me penniless.
Nancy B I understand, from your post I thought you meant those in Texas.
The Miller Trust does not include assets or resources, nor does it include your own income, only the income of the Nursing Home applicant.
The Trust would of course take the income of the person going into the Nursing home, not the community spouses income, And yes Nancy by all means let the lawyer decide. I am not a lawyer and do not claim to be.
Jane, my sons are coming to conference with me at Thanksgiving. One has a friend/insurance agent in CA (we're in RI) who recommended putting our savings into an annuity which would start paying out immediately. I think the sons are wary of looking at Medicaid. Given that my husband is 85, what would be the point of putting savings into an annuity to pay out starting in the next year or so, over simply paying out a certain amount (equal to what the annuity would pay out) from the savings? The savings are mostly easily accessible.
briegull, I myself would absolutely NOT recommend it. With your husband at age 85 most insurance companies will not issue an annuity that pays out in less than 10 years and even if they did I still would not do this.