I read so many of your posts. I consider everyone here my friend. You've all been my life support system and endured my rants since I became personally acquainted with this crazy disease. I read so many posts about hiring in home help, sending LO to nursing home, going on cruises with them, getting away for a respite of your own. So many of you have caring family members that help you. I have absolutely NO ONE. As for me, I worry about feeding us, should John ever be discharged from the hospital. I count each cent. I worrry about legal expenses and back taxes...not to mention the $10,000 nursing home bill I was handed on Johns last discharge in FL. (I hope it works out that that one is NOT my responsibillity). I worry about things breaking that I haven't the ability to fix. I feel bad about hiring a boy to cut my grass , If he has to go to a nursing home, how will I pay for that? Since laws have changed, how would I be able to hold on to any cash assets I have and therefore be able to stay on my farm that is in my name and paid for? There are still maintanence issues, things break, realestate taxes to be paid, insurance premiums, what if I get sick or hurt? Are you all mostly so well-heeled and have so much back up support that you have none of those worries? Do you continue to live the life you live with your DH/DW because it takes time to prequalify for Medicaid (that's what I guesss I'm doing), or is it simply for love of that person, some of whom don't even respond to you anymore? Do you keep them home because there is simply no other choice for you (like myself) and you don't want to loose everything to the cost of a nursing home (where they don't keep care of them like you would anyway). Please help me understand. I feel like I'm missing something as my 'barrier' of self-protection goes up brick by brick. Yes, I do have an appointment with an elderlaw attorney...but not for a few days.
Stunt girl, rest assured that we are not all well-heeled here, we all worry about our finances. First of all figure out which health insurance policies he has and which policy pays first (primary) and if there is a another policy such as a Medicare supplement that works in coordination with the primary policy. You will also need to find out who will pay what. The Case Manager at the hospital can help you find out who will pay, he/she should be one of your first stops. They will also be able to provide you with information on Medicaid.
Next, get him qualified for Medicaid, if he is approved Medicaid will pay some bills retroactively. The Elder Care Lawyer should be able to help you with the requirements. The Lawyer should be able to tell which of your assets are at risk, how they are titled is very important. Medicaid laws vary from state to state.
I am also in the process of jumping through these hoops, it is a lot of work. If you can get some answers and the paperwork process started, if should help ease your mind and take some of these burdens off of your shoulders.
Thank you, Jimmy. Right now, I just need affirmation that I'm not doing battle alone. I feel like I'm going to end up in some "mission" house living with the rats. Need to hear from others, too. Listening.....
Jen, I still work full-time BECAUSE I have bills to pay and have EXCELLENT health insurance where I work. If I didn't, I'd be in hot water up to my neck. I don't have long term care...which is why my husband is at home (he does not have anger/rage issues either) and my daughter and grown grandson are co-caregivers with me. Of course we are all concerned about our financial condition, and have tried to put safeguards in place to protect our homes and provide for our spouses in case of our demise.
Jen, most of the anxieties you have are a normal reaction to the circumstances we find ourseelves in. You certainly are not alone. If you think we are all well heeled stop and think about the annual cost of nursing home care, at $7000.00 a month, that would be $84,000 a year. That would make a huge dent in anyone's budget.
We have enough on our shoulders, the financial questions only add to the burden. Don't feel like you are alone, stay in constant contact with us and keep on talking about these issues. You will get through this, I know you will because you are a smart and caring lady. Hang in there you can do this it's just a matter of setting some priorities and working through them one by one.
Jen, your comment that the nursing home won't take as good care of him as you will -- I suggest that you look at some of the other threads that are near the top today, where people are talking about how their spouse seems happier and more engaged being in the social situation with others. You can't literally kill yourself taking care of him, or take a chance on your own safety. If he has these violent spells, a nursing home can get him medicated and more comfortable in a way that you can't. Of course, you have to find the right nursing home, which is another issue.
Jen..you are not alone in your battle...I am still working full time, and cannot keep finances in order..I am about to forclose on 2 properties, and my cash flow is -2k a month. My debt is over 600,000 and yes I worry about losing everything...sure, I would love to qualify for medicaid, but on paper the assets look too good..Since the housing market tanked, I lost over 600,000 in equity, and seems like it happened overnight...and right now, I could not even sell anything with market conditions as they are. Jen, you need to concentrate on today, and not worry about tomorrow,...today has enough trials by itself...It's ok to plan the future, but you have to live each day one day at a time....can't live in the past, nor in the future....and if everything is lost, keep in mind that you were actually born with absolutely nothing but your body.... Concentrate on today's worries, and you will find that in time, everything will fall into place....remember that our biggest worries actually never happen....
Stuntgirl, Money-wow is this a worry for me. We moved about 2 years ago, spent much to0 much money (and third state we had lived in in 4 years). So:one new house, bought in Nov 07 (less than a third down); one new car, bought in Dec 07 (got what DH had planned on for a year, after totalling existing car); retirement funds, mmmmmmmm still some there, won't last long for nursing home and/or in home care; lost at least 1/3 anyway.
DH stopped working at age 55. Certainly hadn't planned to.
You are not alone. If some people here are rolling in the dough, it certainly isn't me.
Well, Jen, thanks for getting me over my pity party, where I was crying again, just wanting somebody to love me, to hold me, feeling so alone. Now I feel better, and want to assure you that as everyone else has said, you are not alone in all this crap. We are living on soc. sec., having retired at 62, which cost me $300/mo. But I had to, in order to be at home with DW. I inheirited enough from my dad last year to be able to take care of the next few disasters like a water heater, a/c, or other major applicances, etc., but if property taxes and ins. outstrip increases in soc. sec. payments, I'll eventually be up a creek w/o a paddle. If push comes to shove, I'll have to downsize again to get some more equity money out of the house, and if a nh is in the future, it is definitely going to be Medicaid. So there you have it, our financial plans got screwed by DW not being able to work since 1983, and my changing careers and taking a 50% salary cut at about that same time. Hence the living off the taxpayers. Not what I planed.
Jen - I am by no means secure financially or otherwise. We have been on unemployment since October. Fortunately I had been saving money at our last job so that has helped. PTL our car was paid off a year ago. We still owe on our motorhome which is our only home, plus small balances on two credit cards. My husband just exhausted his WA unemployment and has to use what is available in NV until the federal extension kicks in. His NV benefits are half what his WA were and my unemployment runs out in 3 more weeks. I should qualify for the federal extension but have not received notice of it, so for now I look for it to end. Thank goodness for my sister -we put an RV pad in next to her house back in 2004 when we went fulltime. We only have to pay her some to cover the extra utilities. Art will be eligible for early SS in September but I still hope to get SSDI since it would be more.
Medical: we are so thankful for the VA. If not for them, he would get no medical care. I have no medical so rely on taking supplements to keep healthy.
So you are not alone in your struggles and worries. I rely on my faith in God to keep me at peace and not worry so much.
Well heeled-I think not. I have lost half of my nest egg. Even though the cost was very high I chose to purchase LTC. I did this by doing without many material things I would have enjoyed. My husband and I worked hard all our lives to provide for our children and their educations. I am very careful to live within my means and just do without what I can't pay for.nnI am strictly on SS with no pension. When given a choice my pets get medical care before I do.
I think there are many on this forum in the same position as all of the above, including us. We live on SS and a very small pension my DH receives. I work a few hours a week (fortunately, at a good hourly rate) in order to pay for insurance and to have the little extra for maintenance on our home. Our 2005 car is paid for, we have no credit card debt - we don't buy it if we don't have the cash. I do have my IRA, which is not substantial, which I haven't touched and won't have to for a couple of years. I'm sure we all have very different "money" problems depending on our circumstances, and some have been fortunate enough in earlier years to be able to provide for themselves in these later years.
We do what we can with what we have and keep on keeping on.
I just found and read your post – so I thought I would take a moment to share this with you – You are not alone! I too am not ‘well-heeled’ by any means. I live on my Social Security, my DH disability, and my small pension. That is all. I was forced into early retirement because my husband needed so much care I could no longer leave him home alone. I took early SS which means I get 20% less than if I waited until I was 65. I have to account for every cent I spend, of his disability check to SS, because I am his Representative Payee. I have had to cash in his small IRA’s to prepay his funeral expenses. We have little if any savings because he spent money like water before his illness progressed to the point he could no longer handle money. Of course I did not question him – it was, after all, half his money.
If I took a part time/full time job my earnings would count toward he Medicaid and he would then be ineligible to have his bills covered. The only work I can do is volunteer work with no compensation. Talk about being up a creek without a paddle. Some months I do not have enough money to buy groceries. I have become acquainted with the Angel Foods Program , through several local churches, to make sure I have the food I need. Most of his clothing and special need items I purchase from the used merchandise stores, the Dollar stores or from local garage sales. The maximum I am allowed to have is $2700 a month, total.
After 17 months, and thousands of tears, I am facing a NH bill in excess of $90,000+, with no way to pay. My DH requires full time 24/7 care so keeping him at home longer was out of the question. This is just the bill for the NH costs. I have applied for Medicaid, gone through the 5 year look back, and have been told I should be approved – after all these months and bills I am still waiting for something, anything, from the state, in writing. Every day the total goes higher.
I own a small, but nice home we built that still has a mortgage, taxes, utility bills, insurance, landscaping/mowing bills (because I can no longer do this chore), and all the other expenses that go along with owning a home. Fortunately my home is placed in a trust so Medicaid cannot touch it – and he and I both have life rights to the home. After I am gone I could care what happens to it, as long as I always have a place to live.
I have no financial or emotional support from his family, his daughters seldom come to visit him at the NH and only complain that I am doing a terrible job of caring for him and that he doesn’t belong in a NH in the first place. It is all in my head and there isn’t anything wrong with their father. I should keep him at home where he belongs. I might add here that my DH is a total and complete invalid that spends his days in a wheelchair, he must be fed, changed, turned, he can no longer communicate, and he no longer knows anyone most of the time. None of mine family is close enough to help out. They do support me emotional and are always there if I call upon them. I do it all alone, and have for the past over 8 years.
Last year my medical and pharmaceutical bills amounted to almost $9,000 over and above what Medicare and my Medical Insurance paid. I have multiple medical problems as well as all the normal aging problems we all face. I am not looking for sympathy, only to assure you that you are far from being alone. I think there are a lot more people in the same situation than we realize. We just do the best we can and take each day as it comes. Try to keep a smile on your face and a lilt in your steps – just remember, we are all here to help, to listen, and to learn from each other. Please stay in touch, and I will try to do the same.
gee can I relate to this post, I am living off of ss which is not much, enough to pay rent and utilities, no extras, no car to worry about, all nh is paid for by medicaid than god, I am holding on by a thread,as for medical for me I have to get in touch with social services to see if i quifify for anything hate to do that, we have no retirment so that don`t work, good thing i don`t care what I eat, daughter around the corner feeds me alot.I just keep on doing what I can and pray alot, need to win the lottery, lol
Lottery....that's an idea. Someone has to be the winner, right? Should be one of us. I just feel lost a lot. Rbosh, my husband ran through $700,000 with his day-trading....before I realized what was wrong with him. I figured he had it (the $$ to play with) and knew what he was doing. Resentment, big-time. Everything's gone, gone. I have my place, paid off. EVerything is in my name. I have 30K and he has 58K in cash plus his SS of $1600+ a month. And a small VA disability check, enough for a bag and a half of groceries. It's looking more and more dim as I sit here, looking at my youngest daughter's text message of a few minutes ago. I tried to call her. She messaged me, "Just leave me alone". I've really gotta "man-up" or I'm gonna loose it.
We are by no means well-heeled. We live on our ss. and a very small v.a. disability pension. I work part-time to give us a little extra money. Thank goodness, we have no bills, house is paid, for 2001 car paid for also. If dh ever had to go into nh, our very small savings would be gone in a flash and medicaid would have to take over. I'm 75 so guess I'm pretty lucky to be able to still work.
From the sound of it, I guess we're a little luckier than some. While not really "well off", our 401k only took about a 10-15% hit with the economic downturn since we had moved from equities into mostly fixed income investments several years ago, and that, plus considerable equity that could be recovered from the sale of a soon-to-be-too-large home, should be enough to supplement social security in seeing us through pretty comfortably so long as we're able to keep my DW here at home -- which seems feasible with the help of my son and now maybe hospice. (How's that for a long and convoluted sentence -- Sunshyne, are you looking?) Another factor working in our favor (if you can look at it that way) is that at ages 83 and 81, the time horizon over which our "nest egg" has to last isn't all that long -- although I'm still hoping to do lots of living after this AD journey is over! Our long term hope had been (and still is) to leave enough of an estate to our two sons to replace social security, which may no longer be available or solvent by the time they need it -- because my generation has voted itself too much in the way of entitlements and low taxes.
:confused: I've been an LPN all my adult life. Not a lot of choices out there, and this late in life I cannot decide if I want, or even can afford to go back to school.
I've thought during my more recent caregiving days that I would NOT want to go back to nursing at all. But.........I can't think of anything else to do when I grow up. I always knew DH had life insurance through his employer to get me through the first year and a half, but have not been able to collect. I never anticipated having to go back to working so fast. I have had several rough nights sleeping. Budgeting woes get to me all the time, and I have many anxiety filled nights. I will run out of money fast as I only have 35% (actually maybe less than that) of the income we had prior to DH passing away. I resent that I will need to work so soon. After all, it's less than 3 months since my DH passed away. Working is NOT what I wanted to do right away. I haven't worked outside the home since end of 2004 as I was caregiving 24/7.
I did pay off the car with the bit of life insurance I collected from a policy I took out on DH with AARP a few years ago. Meanwhile I continue to fight what feels like a losing battle to collect the primary insurarnce (it ain't over til its over though) from DH employer. They lost records, and insist the life insurance was left in step sons name (now deceased), and second in line....DH's girlfriend at the time (1981). He did eventually marry her, but she was screwing around within the first 3 years, and they were divorced...finalized after seven years. Well, the ex tells my stepdaughter it's carma, that it was meant to be, that my DH must have subconciously felt he owed her. BULL!. My stepdaughter says she is so upset by her mom's thinking, and expressed her feelings to her mom, but it only ends in argument with her mother telling HER to stay out of it. SD says her Mom intends to fight me on this legal technicality all the way. I've filed complaint with the insurance commissioner, after filing rival claim with Metlife first, and while I know "LAW" would seem to be against me I am praying for God to change her heart (she needed only decline to claim and it automatically would come to me.....but she's greedy"). That woman knows DH despised her. If anything, she owed him.
Meanwhile this situation will affect the relationship between my SD and us....her sibs and I. It will be nothing short of awkward and strained. I'm resentful that the ex wasn't honest by stating she "KNOWS" there is a failure in the records transfer, and "KNOWS" she was not intended to be the beneficiary. I was married to DH almost 20 years and nursed him through his illness. Also have two of his children who are still dependents. I'm resentful that a woman who had brought such public humiliation to my DH years ago by sleeping around with her boss, who worked just down the hall from DH, and half the plant knew it before DH did....has a perverted brain that thinks "he must have felt he owed me (her)." And she divorced him, and we paid her for child support all those years while she took trips, etc. For her to have a perverse belief that DH felt he owed her anything at all is what keeps me anxious and not sleeping well. She is a real piece of work. I'll get off this now cuz when I get going it ruins my whole day.
TJ, if I won, I'd share with you and the others here too... Carol is right, and it IS the thought that counts....I just get angry that Uncle Sam gets so much of it!
Mary, I think that ANY winnings, prizes, etc. that someone wins should be tax paid (or tax free). So out of the 100 million, I should have 100 million to distribute!