Any suggestions for a caregiver who feels trapped into caregiving when they want to live their life?

There are some very valid points made here and hopefully some guidance for others facing this problem.
When God said "to not forsake your parents" I don't know that necessarily meant at the expense of yourself. Sometimes it is just not possible to have your parent(s) in your home.
When it comes to Medicare and Medicaid, an elder law attorney should definitely be consulted. When a patient goes from the hospital into a nursing home for rehab, Medicare will pay UP TO 100 days. Generally they get away with 30 days and that's it. I have done a lot of research for my state on Medicaid. Yes, there are some "rules" that are universal. The parent's home is exempt from being included when there is still a spouse living in it. Some states have a 5 year look-back law, so you have to be careful what was spent on your loved one. Good record keeping takes care of that. Another avenue to consider is to place all your parents assets into a Trust. As long as they are alive it cannot be touched by Medicaid, you can pay for anything for your parent(s) care, then when they die you will be billed for whatever Medicaid paid for their care. If there is nothing there, you must be able to prove that all the money was spent on their care. The advantage to this way is you won't go into a tailspin trying to do their "spend down" to qualify.
It's very tough taking care of a loved one in your own home and those who tell you that's it's a breeze are not being honest with themselves. When the care giver is mentally and physically unable to do the caring than it's time to make other arrangements. Homes of whatever level are there for a purpose. You just need to do some research, visit a few places and find one that meets your needs and the needs of your parent. Don't let those who try to pass on their horror stories influence your final opinion....everyone's experiences are different. And most of all there is no reason to feel guilty about placing your parent....there are a lot of people who will try to inflict that on you and you must remember that in placing your parent you are actually showing them how much they are loved because you want the best for them. That is not always keeping them at your home or even their own home. And what is best for them is not always what we provide. Good luck to you in your journey, it's not an easy one, but do it from the viewpoint of what is best for all parties concerned.....it is your decision alone, and not what someone else tells you to do.

Julia - I know how you feel about feeling trapped - I try to find some positive ways of thinking about caregiving as it is also difficult for me (one is biblical: to not forsake your parents when they are old). However, even with this, I do very much still resent the fact that my siblings get to carry on with their lives and mine has literally stopped (good thing I am not married). For me, Carol's expert advice to get help (for Mom and me) is something that I needed. I am still charting this unknown territory and have no advice, but hope that it gets better for you. Thanks for your post - it really helps to know that the feelings/emotions are not mine alone....

I thought they were allowed a home and a car , at least in texas they are. I am becoming my dads caregiver after the first of the yr...Lord help me..

I'll echo Coach's on dealing with the SSA.Carol's comments are spot-on too

Medicare & Medicaid are very different programs. This site has sections on them.
Basically MediCARE pays for health related items (hospital, dr visits, RX) and everybody can get Medicare at 65 - we pay into it when we work. Even when you are retired and get SS, they still take out for Medicare (about $ 97 mo).Medicare will pay for a few days (I think it's 26 days) in the NH, if the elder was in the hospital prior and is discharged to a NH that has a rehabilitation program. This is pretty common and how most end up getting into the NH. You use the time Medicare is paying to figure out how to pay for them to continue to be in the NH if that is what's needed.

MedicAID is a federal/state needs based entitlement program (and very different than how Medicare & SS are done as they are federally structured entitlement programs).Because it is needs based what was done with assets in the 5 yr window prior to Medicaid application is central to qualifying. Medicaid is designed as a safety-net for low income who can show both financial and medical necessity for long term care. The monthly asset ceiling and how assets are dealt with after death (MERP) is set by each state.

Each state has its own regs for MedicAID for nursing home payment. In general:
- you must be 65+
- you must need skilled nursing or other skilled health care services
- have countable assets under your states asset ceiling (about $ 2K but varies)

Their home (if under 500K or 750K in some states, like NY), their car, term life insurance policy (a NCV type) are considered "non-countable" assets. So her having a home doesn't matter for Medicaid qualification as long as the home is considered her homestead and primary residence and that can be verified. If she moved in with you and changed her ID and rented out the house, then the house exemption can get to be a sticky situation - you'll need an elder care attorney.
If the property is over the state's limit - like the assessor has it at 580K- then they cannot qualify for Medicaid. The property has to be sold and the $ used only for her care and her needs. A lot of elder's have had their 1960's era purchased home have huge increases in value & they really paid no mind to it as their taxes were frozen for being 65+. Then it's an issue when they need Medicaid.

"Countable" assets are whatever they received each month from SS, an annuity or other retirement. The amount is whatever they receive BEFORE anything is deducted for insurance payment. So if mom get's 700 from SS and 1000 from dad's pension, then her countable resource is $ 1,700 and ALL of this less whatever your state has as their monthly personal needs $ (30 - 80) HAS to be paid to the NH. Some states deduct the insurance & Medicare payment from what has to go to the NH. Medicaid is kinda maddening in that each state manages it differently and each NH runs how it deals with the personal needs monthly $ differently (some require it be put in a trust fund at the NH and others let the DPOA manage it). What will be important is that you find a NH that accepts residents
"Medicaid Pending" - that means you will pay whatever mom's assets are each month till the paperwork is done (my mom's took 5 mos); many NH take Medicaid but do not take "Medicaid Pending" - with those you will need to private pay whatever is the difference from what mom's assets are. So if the NH is 3K a month and she has $ 1,700 a mo, you will have to pay $ 1,300 a mo to the NH.

About the house with back taxes. You need to find out what the county assessor has as the appraisal. Most just sent this out as most have it due Feb 1, 2012. Many counties have this on-line. You will need to have this document anyways when she applies for Medicaid. Assuming it is under 500K, then she still keeps the property and qualifies for Medicaid. Now under Medicaid, the house is subject to MERP - Medicaid Estate Recovery Program. You will sign off on a document that states you know that. Again each state does MERP differently and it is usually done through probate. If no one in the family want's the property or has the $ to buy it, then personally I wouldn't worry about it - let it go to sheriff's sale or assessor's tax sale. Hell you could even buy it at auction for a fraction of what you would pay to clear the back taxes.

Remember once mom is in the NH and on Medicaid, every cent less her personal needs allowance must be paid to the NH. There will be none of her $ to pay for anything on her homesteaded residence - taxes, maintenance, insurance, utilities, etc. You or other family will have to do it. I am doing this for my mom's home and when she dies, I will file a claim with her state's MERP program for every cent I paid & my cousin who pays for her yard care will file a MERP claim too.

Next month - January, 2012 - your mom will be getting a # of documents you will need for her Medicaid application. SSA will send out their 1 page statement and all the retirement/annuity accounts do also (either as a EOY statement for 2011 or 2012 beginning of year one). Also the banks & investment houses & insurance companies that pay a dividend will be sending out their statements. You will need all of these to do her asset sheet for the Medicaid application. Good Luck!

I brought my Dad home from the NH he was originally in as he really hated the place. He was only here two days before he had a small stroke in my hallway. He went to the hospital who again recommended a snf. This time I was more careful of the one I chose and even though he does not want to be in a home, he did admit this one was really nice and a huge improvement. He is in rehab but I know he is more than I can handle in my home. It breaks my heart but I have to see it for what it is.

Thanks for the good advice and support about my Mother's situation. After Christmas I plan to head to Social Security office and start somewhere! Hope you all have a Merry Christmas or Happy Holiday.

Julia, take Carols advice. The home should not be a concern for Medicaid approval. But as Carol said the back taxes could be a problem. I to would recommend you seek the counsel of an Elder Law attorney to hopefully find a solution to the tax problem and getting your mother approved for Medicaid.

I'm not sure the Social Security Office would be your best source for information. I have found they are much more interested in getting people in and out than they are with actually helping and answering questions.

Good luck on the legal end of your journey. You might also try buoying your deteriorating spirits by starting a 'Grateful Diary'...it may offer you another perspective from that sinking feeling that your life is slipping away. It takes
persistence, but try it. For what it's worth, you are not alone in dealing with the situation you find yourself in. God bless.

Best Place to start if you plan on a NH for your loved one would be Social Services(Medicaid) They have a form there for you to start the procedure. Everyone is right this is not an easy avenue to go down. It is exhausting, and it never ends it seems. Always something. You have to be really a strong person to go though all of it. What ever the out come should be. I have been with my mother for 10 years and the last 4 years has been very hard. Her dementia has worsened by the day. Her medical problems has ended her in a rehab unit and now I'm trying to get her Medicaid Pending. We have lived together and she has paid most all the bills and she did not want me to work, so I could care for her. Now the state and nh want it all. I can no longer watch her for my health is really bad right now and I need surgery in January 2012. So bring her home is out of the question at this present time. Talk about a horrible ride my mom and myself have been on and it isn't over yet. Good luck to everyone out there because we are not the only ones in this situation from the sounds of these post.