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I've taken care of my folks since I was 9, I'm 45 and finally engaged but can't bear to stop caring for them. They are both near the point of needing a NH and I'm so torn over putting them in. I fly every two weeks from Denver to Detroit to spend two weeks caring for them. Caregivers are draining me ($1500 a week). I feel like I'm giving up on them by thinking about a NH but they need constant care. When I'm with them, I get no sleep, just constantly up n down. I want my life and don't want to end another (this is #13!!!) relationship b/c of my parents. 7 siblings all have their lives, I'm the one taking care of both of them now. I guess I'm looking for support and permission. Is it so wrong that I want a life with someone. It's too late for me to have kids but not to get married. Thanks to whoever writes back. There's more of course but can't be longwinded on here. lol.

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Sounds like you've got a plan. Good! I hope it works out for you.

My husband *85, dementia) wanted me to promise him I would never put him in a nursing home. Since I know that my extensive skills and powers do not include the ability to see into the future, I promised him that I would do all that I humanly could to care for him in our home, and that if the time came when that was not possible I would not abandon him but continue to care for him where he was placed. That is a promise I think I can keep.

Once when he was feeling down he said, "If I ever get so you can't take care of me, just stick me in a snowbank in the back yard and let nature take its course." I replied, "If I did that the neighbors would call the police, you'd be in a Nursing Home within the hour and I couldn't even vist you because I'd be in jail for neglect."

If your mother ever has increased medical expenses, she may well change her mind about Medicaid (assuming it is still around), unless she has considerable assets to pay her own way. But let's home she'll never need more care.
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I talked to my future bride. We both agreed that we will not start a relation in my house where my parents live. (It is the one hen in the henhouse syndrome) that has been my experience. My lady understands my position. She is quite christian. I will not take advantage of her patience. We are early in the relationship. She has her apartment in houston. My parents had me promise not to put them in a nursing home. I believe my father's next step will have a live in provider. My mother can still care for herself. With help from above, I feel like I have about 2 years to get a plan together. I will talk to the siblings again.
You have been genuine
thanks
oh my mother is not on medicaid and she does not want medicaid. She does not like the idea how medicaid controls the income. I wish I could show her all that is being paid by medicaid compared to my father's income. He has a mattress that medicaid is paying $800 a month for..
bye for now
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I am giving you permission, get married, place them in a NH, visit when you can, and go have a life..... go for it... hugs across the miles to you ,deal with the guilt later, you deserve happiness too.
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Your parents are very fortunate that you have been able to care for them for 4 years. I am sure that has given your father his best chance of recovering as much as he could to his baseline.

Could they continue on their own without you there, if they had additional shifts of caregivers? But that brings up at least two issues. This is your home. Do you intend to live there with your wife, or were you planning to set up housekeeping elsewhere? And at some point bringing all that care into the house becomes more expensive than placement, and Medicaid needs to make cost-efficient decisions.

It sounds like your parents need more medical care than most ALs could provide.

This is beginning to point more and more to a skilled nursing facility, isn't it? Is your mother also on Medicaid. Financially the transition should be pretty smooth. You would continue with handling their affairs. You would visit them frequently. You would give up your role as errand runner and second shift caregiver and take on the role of fulltime advocate. I know you would not dump your parents in a facility and expect things to run smoothly on their own. You would be there for them and make sure they are getting good care, and see to it that deficiencies were corrected, etc.

Even if they are in a LTCF, your parents are still going to take up a portion of your attention and your time. You and your future wife would need to be very clear about that from the beginning. But in those circumstances it would be possible, with an understanding wife, to build a life together. I don't think that is as likely to be possible if you try to bring your new bride into the home you've established with your parents.

What do you think?

And congratulations on providing hands-on care for four years. You can feel very good about that.
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Jeanngibbs thanks for your response. I needed to know someone understands.
my father is 90 years old. He is on a Medicaid CBO program. He lives with me at my home. He was transferred out of a nursing home. He went to the nursing home about a year and a half ago to recover from a broken arm. When he was released he could not walk. He was walking with a walker before he went into the nursing home. Then he could not swallow well so he had a peg tube put in. He is back on puree food after taking some speech therapy.. His medicaid program provides nursing skills and therapy and caregivers.He has a provider in the morning and I do the evening and weekends. Being the power of attorney for my father, I handle all of his affairs.
Now my mother is 79. She has a nagging ulcer on her ankle ( no bone infection) and she has cervical stenosis. I am the only driver in the family. So I pick up all medicines and buy food and trips to walmart. I have 3 siblings but bad communication with daughter and mother and brother and mother eliminates the two from physical help. The third expects to be paid
This is a lengthy explanation but i think I covered the basis of what you asked.
Sincerely
Richard
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Rpscaregiver, if your parents live with you and you manage their financial affairs, in what sense are you the "backup provider"? Who is primary?

What are your parents' impairments? Could they live on their own, with some support? Would they need skilled nursing care if they didn't live with you? A few more details would perhaps encourage more specific answers.

You are right, though. I don't see a quick fix on the horizon. That doesn't mean there won't be a satisfactory answer, just that you'll have to work at it.
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Let's review the math here......You were nine years of age when you started taking care of your parents? How old were they when you were nine? According to your statement, you have been caretaking for 36 years...???
Somebody call the cops.
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I am 57 with 3 siblings. I am the backup provider and manage my fathers medicaid program. I bought a house for my parents to be close to medical help. My parents live with me. They are 90 and 79. This has been good for 4 years. Now i have found someone I want to marry. As the above story says, go on with your life or live a life alone. The managing of my fathers program is quite extensive.
I can not leave my parents stranded, but I do not want to lose this lady either. She is a Christian woman with a lot of understanding. I need to respect her and her limitations. I do not think there is a quick fix.
thanks rps
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Congratulations on your marraige and I cant imagine how hard it is to put them in a home. As long as you visit as often as possible, you will feel better. My Mom gets VA and your post got me concerned, what happened, why, will we have to pay back anything? My mom lives with me. Thanks
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Haven't been on here since last July. I did get married on October 10, 2010. We had the shebang videod for my parents. When my dad saw it he said is this for real?

My folks are in worse condition and even though I've had them on the waiting list a the best nursing home in town for 3 years, they are no closer to getting in. So I am being forced to put them in a sub-standard nursing home in town. They have used all their money. Oh yeah, and in the past few months, the VA wanted back $30000 from my 89 year old WWII veteran father, and Medicaid is penalizing them each with three months penalty for the nursing home. What a nightmare. So there you have it. I'm feeling awful guilt because I cannot get them into the best nursing home and it's going to be awful for them to go to this other one. But hey, I will get my life back. My new husband is thankfully so far understanding but who knows what he does when I'm gone for so long at a time and he's alone.

THanks for all your kindnesses of last year. Just thought I'd update you and say hi.
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Hey Dulci,

How are things? You posted a very important message for many of us.
I miss knowing how you are.
Please let us know?

Rip
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You are a wonderful person to be so caring. I too have felt like I have given up my life these past 14 months to ensure my mother, age 84, is properly cared for following elective heart surgery. She is a strong lady and still has a great mind so I am not giving up on her. Somedays I do feel like "running away" as my older brother has only visited our mother once since I had her relocated near me in Maryland. (He lives about a 3 hour drive away in Pennsylvania.) All I can suggest is kind of what I try to do. Make the time to be with your new relationship as you are needing to build a future for yourself. You matter and the older we get, the more we realize how precious time is. Family members should be ashamed if they simply are selfish and continue to live their own lives and not help be their for their parents. My mother has always been there for my brother and myself and frankly he seems to be the golden boy as she always worried more about him. Please don't lose your new relationship over this situation.
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Dulci, I see. Your parents ARE quite elderly. You never thought that they would live this long. Well, like the previous suggestion, I think that you should keep on finding caregivers in Michigan to take care of them.
Assisted Living will drain you financially. I forgot about Frontier Air.

N1K2R3
p.s. Who does your Income Taxes? Are you claiming both of them? Hope so.
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Mother is 86., had a brain tumor when she was 50 (i was 8). is partially paralyzed, totally incontinent.

Hah..insurance money? Wha'ts that. Inheritance? I think not. These people were farmers during the depression. They never thought they'd live this long.

Actually Frontier and Southwest have non stop flights, 3 times a day denver to detroit.
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Dulci, So Your Dad had you when he was 44 right? OK.
Where is your mother/ How old is she/ What condition is she in now?

My suggestion is either move to MI and keep your place in CO,
or put your parents in an Assisted Living Facility, pay for it now and get their insurance money when they pass away. The original choice would be to find an inexpensive caregiver in MI and keep in touch with them by phone daily. Either way it will cost you.
N1K2R3
p.s. you must love Delta Airlines.
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dulci,
Congrats on your love. Glad Hubby to be can raise a beer with your dad. If I make it to 86 I'll tip one or two a month myself. It's part of the quality of life thing. lol
I don't mind the alone time either. R&R type stuff. My Hub has been laid off for a while now and was driving me nuts, but we got accustomed to each other again. Working opposite shifts for 8 yrs before I retired presented much alone time and I got used to it. We communicated via notes & would fill up a spiral binder monthy. You find ways to stay close as I'm sure you know.
I have great hopes for you and wish you two the best. Best wishes to your parents too. A few bumps on the road are to be expected, especially in Michigan...the orange barrel state. lol
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Crowmagnum, I did not mean to offend. A lot of people are not used to the being gone life. I grew up with my dad being on the road, the railroad, and gone from home 4-8 days at a time. He never cheated on my mother. I doubt he could have ever thought of doing that. Several of my family members were truck drivers, ME INCLUDED for about five years. I was gone 2-3 weeks at a time, home for a weekend and gone again. I have never understood the lifestyle where people need someone around them 24/7. I enjoy my time alone if I ever get any. At this moment, I just got to Denver 3 hours ago from a 6am flight from detroit. The house is a mess, the dog was happy to see me then went outside, it's quiet, I'm exhausted from no sleep for the past 36 hours, but my fiance was happy to see me., i got the car and I'll pick him up from work @ 5. If I were around him or anyone 24/7 i would go absolutely crazy.

I truly did not mean to offend. You, like everyone, just answered my post. I do thank you for your comments.
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Yep. My 89 year old father who cannot walk by himself, wears diapers, can see with only one eye, has barely any hearing, has arthritis so bad he is bent in half, watches Deadliest Catch with me constantly but still can't figure out who everybody is, doesn't know my name most days, sits around when my fiance comes to visit for one or two days a month and had a Bud Select 65 or 55 whatever it is, and smokes a stinkie stogie with which he puts holes in his clothes and ashes all over. Gee, guess he's really not that bad off eh.

They decided and I decided about two years ago that at their age, they can do whatever, eat whatever the heck they want. It doesn't matter anymore. Truthfully, if he has a heart attack and goes that way, that would be the best and kindest thing to do right now. He knows it too.
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Whoa Whoa Your father can sit around drinking beer and smoking cigars? Did I read that correctly? How bad off are they???

N1K2R3
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Yeah, my mom can't grasp the "gifting" rules either - you really have to be careful and not let them do much if anything at all - maybe a couple bucks for a birthday or graduation, and maybe we even reimburse it.

You found a gem of a fiance - oddly enough thanks to your parents in a way!

And let me guess - you have already been to the Railroad Retirment Board and found no extra help wtih long-term care benefits beyond regular Medicare, and/or they never applied for any long-term care insurance? (http://www.rrb.gov/)
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DULCI:

Sorry I didn't your whole posting before making the initial comment. Whatever you did to find that man is what you're going to have to do to keep him, and the marriage isn't going to last long if you're still going to pack up and leave every two weeks. It doesn't make sense, particularly when you have other siblings and your parents can still manage without you.

Remember that song "Torn Between Two Lovers"? You're not even married yet, and your fiance is probably feeling short-changed already. He's taking you as you are, but after a while he won't be as willing to share your life as a part-time husband. Your parents, your decision.

-- ED
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HARDEBECK:

Tell it like it is baby! You have this uncanny ability to see things for what they are, and talk about it so "confusion-less." Thanks for the smile.

-- ED
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DULCI:

I'm sure they'll understand and will be okay without you, but check up on them once you move out. Parting will be a sweet sorrow, but you need to leave the nest and spread your wings. After all, isn't that what they did?

Of course you'll be sad at first, but don't feel guilty about wanting to share your life with someone who loves you just as much as your parents do.

We all wish you the best, and my regards to your beau. He's one of the luckiest men in the world.

-- ED
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I did not mean by living like a single person being unfaithful,. I ment that just being apart for that amount of time very month which to me would not go well for building a close relationship as husband and wife, particularly at the start of a marriage.

However, at this point in this thread, I do think that I will remove myself from this discussion. Good luck!
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My parents do not collect social security. My dad worked for the railroad. They sold all their properties about ten years ago luckily and that is why they rent. If they had assets now, it would be very detrimental to the medicaid situation because I'd have to sell everything and nobody in MIchigan has money for anything. They can't even give me anything...I had to buy the travel trailer that I've loved since we first got it in 1978 for fair market value! I have to buy the Allis Chalmers tractor because it still has a value attached to it and according to Medicaid they cannot have anything of value and cannot give anything of value away. That is 'hiding the money'.

I had a fiance last year that I had been with for three years. His mother was worth $12 million. I tried to marry him, tried to accept what he was (gay and trying to live as a heterosexual family man), and tried and tried for three years. He was the laziest, rudest, crudest man I ever knew but I tried to be with him because of the money. I never would have had to worry about money the rest of my life. He and his mother would not accept my parents, would not help me one iota with them, she wouldn't even buy a flipping scooter for my dad when he lost the ability to walk. He yelled at my parents, cussing my dad out and even using the F-word at and to my dad and mom. Told me I was giving up a great life because of my parents, I was a slave to my parents. Well, better a slave to them than to a jerk like him.

I left him and his mother and got nothing absolutely nothing after three years. They demanded I give back jewelry that had been gifts or they would sue me for it.

I met my now fiance last October. He has no money, no family. He is the kindest, most generous man in the world. He cares for my parents. Smokes cigars with my dad, drinks a beer with him. Talks to them. My dad is very hard to talk to. He has only 2% hearing and is blind in one eye. But Mike has treated them like he would his own parents.

I don't care if I lose all the money I ever had. I've done it before for lesser reasons. Medicaid sucks but it's what we have to do. I just thank God really that my folks because of their dementia don't really understand the financial end of things because my dad would be so ashamed.

I have nothing left to lose. Well except about 100 pounds and my love of Pepsi. Life will go on and it will get better and it will get worse. Whether or not I'm married will not matter in the long run. But knowing that I took care of my parents the best I could while others gave up. That is real selflessness.

God bless all of you out there that do the same thing.

Oh yeah and Crowemagnum, being separated for two weeks is nothing. If by living single you mean that he and I are out looking for other people and cheating on each other, then that's not what I'm doing. I wish I had time to go out and have fun. And he has our dog to keep him company. LOL.
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The $240 a day is NOT to an agency as that would be more than double for taking care of 2 people. This is just private people--friends of friends that will work for $10 an hour.

An agency would be minimum $30 per hour for two people who are pretty much incontinent and not able to walk.
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Dulci,
For the Detroit Mich area:.......
1-888-533-4636 will send you a VERY helpful booklet if you are determined to keep them in the area.
Jim Schuster (Elder law attorney) 248-356-3500 will send you a Patient advocate guide for Michigan. No cost and full of useful info.
You can have these booklets mailed to your parent's address. You will be there soon anyhow.
A personal add may get you a well qualified live-in caregiver for much less than $240 per day. You are no doubt paying this amount to an agency???? The actual caregivers don't get near that much.
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OH my. What a situation. Well, when I was looking at assisted living level of care here, they could handle diapers and memory problems and give reminders to take medication though people had to take the pills themselves. They could not need more than minimal transfer help though, so we ended up unable to do it. If that's the case in MIchigan, maybe they would also offer a private pay solution closer to their income level, that is two people sharing one assisted living apartment. One place was even going to give me a rate of about 5k per month for both my mom and dad in separate wings of the same facility which is what we would have needed. Skilled nursing I don;t think can make deals like that, you are probably looking at costs not much less than you are paying now, but I could be wrong on that; they do cover the meds and supplies though. God Bless you and fiance - though mom may have been abusive and alienated other siblings, they still need someone to love them and it is a blessing they have you. My mom was always on the harsh side even before her vascular dementia set in, and tends to run people off too- sad, but its hard to get the rest of my family to visit her here very much any more though she and I can handle it for a short visit pretty much dailly.
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Dulci,

I'm glad to hear of your marriage plans and your determination to follow through with it.

Am I understanding you correctly that you are paying the help out of your own pocket every month? That, plus flying back and forth each month sure explains not having a lot of money left over, but you are able to do all of this because of being the owner of a successful business which allows you to work anytime from anywhere. That's nice. It is very sad to read that at their old age that your parents are having to pay rent.

To me,$5,000 per 8 children is pocket change and does not really make each of you rich. I assume that your mother was on social security disability before starting to draw social security retirement which I can't imagine is very much. I guess the rest of their income comes from his pension plus social security income. I would not think that having to rent one's housing for one's entire life means that they have hardly any financial means that would prohibit them from getting Medicaid even with them giving each of you $5,000 from an inheritance. Also, I would think that with their medical expenses that their net income would be very low and not taxable. .I don't know a lot about medicaid, but it would help a lot if they qualified. From the detailed description above, each of your parents are long overdue being in need of a nursing home and there are good nursing homes out there.

I wish your siblings were willing to get involved in this, but they are voting their opinion of what needs to be done with their feet by choosing not to help out. They must not care or have any respect for their mom and dad at all, but you are the only one. I hope you don't mind my intrusive questions, but I just trying to understand the various aspects of this mess. I'm also wondering about your being gone two weeks out of every month and its possible impact on your marriage because practically speaking it will mean living two weeks out of every month as if you were still single and to me that does not sound good.
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Again thanks for all your comments.

My fiance yes he does have a job and he does come out when he can take a day off work. I don't have a lot of money. I do have caregivers in 24 hours a day when I'm not here but it's $240 a day, $1500 a week. My parents income is $4500 a month. Hmm how long will that last? Plus $1000 rent and $1000 utilities/cable/diapers/food.

My dad is 88, mom is 86. Dad had a stroke, has arthritis that is in his spine so he is bent over now all the time, and had only 30% function in his kidneys. He is in a wheelchair bc if he walks, he can break his bones just by walking. Mom has been partially paralyzed since her brain tumor in 1974. She can barely walk. both of them have dementia, use diapers because they are both incontinent with both bladder and bowels, and on good days they remember my name.

I miss my parents. My dad was and actually still is extremely funny. Except now he wants all the caregivers, well, just the pretty ones, to sit on his lap constantly. Mom just screams and tells him to shutup. Life is one big party.

They both are funny and can be fun but my dad is sinking fast. Ever since his dog ran away three years ago he's faded. We still go looking for that darn dog almost every night. He can't remember what we had for lunch but he remembers that dog.

No they can't move to Denver. Tried it several times, never worked because they cannot breathe out there without added oxygen. They need full time nursing care but because of the way Medicaid works, thanks to my generous uncle who after he died my mom got a bunch of money but gave $5000 to each of her eight kids, we are in a penalty phase because she gave away the only inheritance any of us would ever get. They have nothing after working 80 years for what they had. and they can't even give their children a dime without having to account for it.

Oh yeah, and did I mention I pay the caregivers but I receive nothing? If they had to pay me for my billable time working for them, I don't even want to think about it.

Thanks again for all your kind and some not so kind comments. I do appreciate them. We are all under a lot of stress and yep someday it will be over.

Until then, I am planning on getting married 10/10/10 and by golly I'm gonna do it. lol.
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