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I think I know why she is being billed. Depending on the state in which you live, Medicaid will kick in when you are down to your last, e.g., $2400 in funds. If you have more than that in savings (not assets/your home, etc., just liquid assets) then you are responsible for the first 6 mos. before medicaid will pay. If a nursing home costs $9,000 a month then the nursing home looks to the family to pay this off, before Medicaid begins to pay. Of course, I am generalizing--there is so much to know about this that I suggest, if at all possible, to go to see an Elder Law attorney, even for an hour consultation. I also recently learned of a method in which you can purchase a medicaid approved trust instrument that will pay toward Medicaid in monthly increments. As I said, there is way too much to learn about in this regard and the laws vary from state to state (in some states it is not even called Medicaid, e.g., in Calif. it is called Medi-Cal) so don't panic about this, but get educated.
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@cattails--it's probably a good opportunity here to suggest that while we are all still well, we should have an attorney draw up Advanced Medical Directive (living will) to put our desires on paper legally. You can choose how much or how little you wish insofar as keeping you alive when you are gravely ill with no chance of improvement. My husband and I plan on doing this as w. ell as revising our wills.
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grannybbellis, Wow! My heart weeps for you and all that you have had to endure and still are. This is a great forum, keep on writing. We are here listening. You are not alone.
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When your on Medicaid, if you have any income at all (like my husband has retirement and SS Disability) all but $50 goes to the nursing home and medicaid picks up the rest. However, his SSD and retirement go into my checking account and I have to turn around and write them a check to the nursing home. We are both allowed so much (which isn't much) I had to have the house put in my name so they can't put a claim on that. I had to change ownership on life insurance policies to me. Otherwise, that's money available to pay to the NH. We are both on anti depressants. I am feeling better this week and not so weepy and mad. Oh yes, I have my moments, but who on here doesn't! I have signed a paper at the NH " do not resistate" if something happens. I really think the only reason he is still here is he wanted to see our first grandchild. Our daughter was 3 mo. pregnant with him when he had the stroke. He was so looking forward to being a grandpa and had planned to quit his PT job and babysit. He has gotten to see that little guy and he loves him so much. He has brought so much love and happiness in our lives in his 2 short years. And he knows "Gandpo" and when he was in the hospital 2 weeks ago he saw his wheelchair and called it "gandpo's bike"!
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I posted earlier to this and I sure do understand the ups & downs we all face. I think it's important to connect with people who are going through similar situations with a spouse and form a network to find ways to help each other. I've checked out some of the growing "Eco-Villages" that are forming across the USA, a modern day communal living, with people who share the same similar views on being helpful to each other and becoming sustainable, the recreation of the village and family unit. So many people and families have been facing such hardships from the economy that they are pooling their resources together in a constructive way. This might be all that's left for me when everything is said & done with my husband. I'm 54 years old and due to my husbands fragile health, might face being homeless in the near future if I don't have someone to move in with me so I can afford my mortgage and cost of living. I think it wold be wise to form a connection on Facebook with like-minded people or possibly they exist but I haven't found them yet. Shalom
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I understand how you feel. You shouldn't feel guilty about it.

You have a lot on your plate working full time, visiting him, doing chores and taking care of things at home. A lot of expenses too. Have you considered moving to an apartment or condo? You mentioned mowing the lawn and having to pay for limb removal. You also noted a 4 hour round trip drive to visit your husband. Perhaps you could find a place half way between your job and the nursing home. Do you own or rent? I know this isn't the best time for selling a home or moving but in the long run, a smaller place would require less of your time, energy and money.

Just a thought that jumped out at me when reading your story. I wish you the best.
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Jack Kevorkian WAS a hero. I get so tired of people acting like he was some viper waiting outside people's doors who didn't want him to come in and he "forced
them or something. PULEASE. Unfortunately, my dear mother is one of those uber Catholics who abhors Jack Kevorkain. (I keep my thoughts to myself as her primary caregiver living in her home) . But since I dont' have children -- i.e. a caregiver bred for me, if things go for me the way they are going for mom (advanced PD with cognitive impairment starting to rear it's ugly head and you know things will only go south the longer she lives) , I will have to be my OWN kevorkian to myself because I don't want to (not that I could even if I wanted to) live my life unable to truly live my live. If that makes me a ghoul -- well then BOO to you!
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Kedwards460: I understand how you feel and can say that I'm proud to live in a state (Washington State) where a person can now make the choice between life and the eternal. My neighbor's operate a hospice in their home and have shared "Chosen End of Life" stories with me. Truly death with dignity. Our society has for years been humane to animals in their pain and suffering, I had always wondered "Why" are we not the same to the human race. The important thing is to make sure your end-of-life choices are in legal form, filed with your attorney, family, Primary Care Provider: medical staff, including your local hospital or any other hospital that you can be moved to and you have someone appointed as your Power of Attorney to enforce your wishes. You can also arrange in your personal choice wishes,or move yourself when you can, to a state where end-of-life personal choice is legal. People do not take care of this and the medical field wants to avoid murder charges. Their job is to keep people alive. My Mother (Living in Washington State) had colon cancer (diagnosed in stage 4), she could have made these choices, but she chose not too. At one point she asked me to get her a gun so she could end it all. I had to tell her "No". She looked at me with a look and made a sound like I was a useless person. It's not that I didn't want her to end the pain & suffering, I was afraid of destroying my life and going to prison for murder. She had 3.5 years to get her own gun. I'm no hero. Shalom
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Thanks for the info islandgurl2 but since I have NO ASSETS I will have no family, (I'm an only child with no children) I don't have to worry about who to live what to or who to make sure doesn't get 'hurt' by my decisions but maybe you have a point -- about 'retiring' to a state that allows you to end it on your own terms if that's what you want. Something to seriously consider. I believe as the baby boomers move into their 70s and 80s more and more states are going to go the way of WA because insurance cos just can't afford to keep us 'alive" when we really are no longer living.
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I am also alone and if my health situation got seriously hopeless and I would be unable to care for myself, I would hope that by then the 'insurance co.s would give us the option of 'opting' out. I am in my 70s and live alone on a limited income so moving to a state like Washington is not a reality for me. I do believe inn quality over quanity.
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I don't know what the nursing home is trying to pull, but people on medicaid don't have money to pay nursing home bills. I would check into this. You have to be poor as a church mouse to get it anyway. Sounds suspicous to me. I know where you are coming from. You are not a robot. I am not sure medicaid would pay for all the care he needs at home. That is the thing that is bad, they will pay for a nursing home but not to hire help so they can stay at home if they need 24 hr a day care. Who wouldn't be worn down. People don't visit anymore. Its like they don't care as long as its not them. Hang in there. Things will work out in the end.
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I have spent a long time wishing my mother would pass away. She moved in with me and lets face it--while she was very generous she wasn't very nice to me--making cracks about my weight and my mental problems (I have ADD) and my tastes. She also didn't have a good quality of life. The most difficult part was her decline. She was in a nursing home the last two months of her life and they must have drugged her because she was really out of it. It was so bad I quit visiting her. I was pretty much alone and spend holidays alone. I was alone on Christmas and Thanksgiving and my friends never bothered to invite me to anything, "you can do that with your mother," they'd tell me. My mother was sleeping all the time and wasn't much interested in stuff like that. Then she died and I'm offered all sorts of condolences when her death wasn't really that devestating to me.
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@keedwards...when I tried to broach this subject with my 91 yr. old mother (to have an advanced medical directive/living will prepared) she balked and said "what do i need that for?" She has always been a stubborn, uncooperative, selfish person. I tried to tell her she needs it to SPARE HER FAMILY the agony of trying to decide what to administer and what to withhold, according to her own wishes. Guess she just didn't want to think about that. I explained to her that my husband's parents had those papers prepared years ago and they gave them to my husband to hold and delivery when/if the time comes. Told her it was just good planning, to spare your children more grief, sadness and possible guilt for the decision THEY were forced to make. She refuses to put anything in writing and refers to all of it as "that legal stuff."
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PunchNJudy, Sorry to hear that. I dont' quite know what my mom has in her will regarding end of life issues. She's gotten uber Catholc the last few yrs so I don't know. I know that my mom lives in the land of "getting better" and unfortunately that will not be the case for her as her PD progresses. Time will tell.
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Until people walk in your shoes, they have no idea of what you're going through and what you have experienced. I sounds like you don't have much of a support system to help you sort through your own feelings. Is there a group you can join to allow you to let go of your guilt and pain? A mental health social worker can be a blessing. I know...because I have gone through simular trials too. Bless you.
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slkanger...various posts have gotten off the subject about helping you with your long and stressful situation. "So much stress....I don't know how much more I can take. . I just want to have a life of mine own again." So, that is what you need help with and what I will direct my first comments towards. What you're seeking help with is YOU...not your husband.

I agree with felines5...you need a support and venting outlet. At a support group you can listen to other's scenarios and how they have dealt with them. When you feel comfortable you can open-up with your issues. And if anything, it can be an oasis, getting you physically and mentally away from the stress and hardship for an hour or two. Don't know enough about the services provided or organizations available in your area but I would suggest you try to find out by making some calls to a mental health or health care facility. They probably can steer you in the right direction. Your doctor's office, the hospital where your husband has been treated or the nursing home where he lives either have organized support groups or have info available about support groups in your area. Don't be hesitant to ask. These people know what you're going through.

In addition, force yourself to get away and have some fun. Call a friend for shopping & lunch. Call another for dinner and a movie. Go to an arcade. Visit a friend or family. Make plans to get your time and your mind off of your worries/troubles. And avoid talking to great length about medical issues and personal troubles. Vent at the support group meeting, not with your friends..

Finally, in response to some previous comments here concerning living wills or advanced medical directives ...1) I've known people in their 50s through their 80s who did not want to complete these non-binding "documents" (I use that term reluctantly!). Some knew they were going to die and some didn't. Some were mentally aware and some were not. Just like the information contained in the document concerns personal wishes, whether or not to have such a "directive" is also a personal choice and should not be looked down upon if one chooses to not complete one.

2) I'm not even sure, except for perhaps a lack of understanding about living wills,
why this issue has been raised here. The premise of such a "document" is that the doctor(s) have determined there is no hope for recovery or the patient is going to die soon from their illness or injuries. Slkanger has not said that she has been told that. And at this point in her husband's treatment, it is beside the point. The time may come when decisions need to be made concerning resuscitation etc. Based on today's reality, I believe she and he are clear on the route to go when that time comes.

So, here is a scenario where a living will or advanced medical directive is a moot point. There are a variety of scenarios where quite possibly a living will/directive does not/would not respond appropriately or be warranted. Which is why many people are hesitant to agree to such a "one size fits all" response.
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@waddle1 - I think the subject arose about the advanced medical directive for a few reasons. One is because Slkanger mentioned her husband "didn't want to live this way." Read his health history. If his condition worsens, it would be one less emotion for her to deal with, the guilt of making a wrong decision if he is unable to speak for himself. As far as not being an "moot point," there are four documents that planning experts say are crucial and they are a Will, Durable Power of Attorney, Advanced Medical Directive/Living Will and a Revocable Trust. When we are overwhelmed in our lives and trying to care for a gravely ill loved one, job 1 is having your planning in order Slkanger has enough on her plate without having one more issue if her husband takes a turn for the worse.
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"The time may come when decisions need to be made concerning resuscitation etc. Based on today's reality, I believe she and he are clear on the route to go when that time comes."
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I can somewhat understand how you feel, but I would like to try and put a different view point on it for you. In September of 2010, my mother suffered a massive stroke that also left her paralyzed on the right side and unable to communicate. She was 56 years old. My dad was killed in a motorcyle accident when I was only 2 years old and my mom had never re-married. She was in the hospital for 10 days and then transferred to a nursing home. I was 32 year old, newlywed to my husband for less than a year, with a 14 year old and 8 year old at home that also depended on me. Luckily we only lived 2 miles from her house. I work full time as well...so I did not know exactly what I was going to do. I just knew that our lives as we knew it were drastically changing. She was miserable in the nursing home and I hated to see her there, so I wanted to get her home as quickly as I could. She would have given up hope if she stayed there. In November, after 2 months of being in there...I was able to bring her home. I had a family friend move in to help us out so I did not have to quit my job. She underwent a lot of therapy, but felt so much better home. I put a lot more strain on me...but what got me through it was telling myself that my mom didn't ask for this just as we didn't. She was there for me always before and now it was my time to be there for her. She also has 3 acres of land that have to be tended to. I work from 8:30 to 5:30 Monday thru Friday. I am at my mom's house until about 10:30 every night...when I first brought her home...it was a lot more though. My kids hardly ever see me and nor does my husband. He is and will always be there for me as he understands that I have to be there for my mom. We have to cut her grass, clean both her house and mine, plus keep up with the kids and any sporting activities that they are in. It is very hard at times, but I try to make the best of a bad situation. Since we brought her home, she has learned to communicate a bit better...we read body language very well. She gets around using a cane and a brace, but is able to walk short distances. We saved up and bought her a golf cart to get around on so she still has some of her freedom. We have the Life alert for her and we installed cameras for me to be able to check on her from work from time to time to make sure that everything is ok. She is home alone a lot now during the day, but I am there every evening and I try to take her somewhere atleast once a week to get out of the house. It is stressful, there is no question...but I know that she would do the same for me if the roles were reversed. Do I miss my life? Yes...I most certainly do, but I would miss my life even more without my mom in it. I hope that my story can help you in some way. Good luck
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slkanger, cattails raises the prospect of Hospice Care. Is your husband eligible for that? I get the impression that he isn't but it is certainly worth checking into. I believe it is a doctor, not the nursing home, that would attest to his eligibility, so the NH has no say in the matter. Hospice Care can be provided in your home or in NH.

This would mean that he has a short life expectancy and that no measures -- drugs, procedures, tubes, DNR -- would be taken to prolong his life, but that everything possible would be done to ensure his comfort.

I think it is worth talking to his doctor about -- if he isn't eligible now, under what circumstances would he be? Then you'd be prepared to bring it up at the earliest possible time, and benefit from this very helpful service.

Let us know how you are holding up this week. We care!
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My heart hurts reading your situation. You are an inspiration of strength and resilience for us. The suggestion to make an appointment with an elder law attorney (consultations usually are free..but ask) is a good move. Tell the attorney your situation and concerns as well as inquire about a living trust. Setting up a living trust can run around $700-$1,000 but is well worth the investment in your future and everyone else reading this post. Did your husband have a pension, or 401k? You may be able to secure these by talking with an attorney. Your situation is heartbreaking and your feelings are normal. We are hear for you no matter how you may feel or what you are going through. Please let us know what you find out after talking with an attorney. Love and hugs to you my dear friend♥!
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Have you tried to find an ombusman? There may be help out there that you don't know about. Is your spouse a veteran? Check with the VA. How about the Agency on Aging? Although it may sound selfish, you need to take care of yourself. Your health is important also. Do the best you can with what is available and don't be hard on yourself. I am a caregiver to my SO because there was no one else to take care of him. I found things to uplift myself and energize me. Also, Try to find a counselor who specializes in these types of situations or find a support group.
Other may have good suggestions.
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I think the one most important thing my husband and I did after his stroke was, "we turned our hearts to God" and also returned to church. Our spiritual health was sorely lacking. Our church is just full of old geezers. Everyone has a story and everyone shares their aches and pains, but most of all everyone shares their love. They are one of the biggest support groups we have. We know that no matter what happens (and most of it we can't control anyway), we are going to be okay. God's Blessings to all. Shalom
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We also returned to Church. It has many older people who understand the situation. They encourage us and always have a welcome smile,and we find the sermons
uplifting and helpful. Let yourself be human and don't feel guilty when you aren't able to do as much as you would like for your husband.
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My heart goes out for you !!! Yes I feel sorry for your husband but there is no quality life left for him. Dear God, please take this man to heaven and give his wife a break. THANK YOU!!
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slkanger, some 16 years I held my sister's hand until she took her last breath. It is not easy to watch a love one leave this world. So I know your feelings, but try to see the good, the joy and the happiness you both had before he became a burden to you and your life. Only Almighty God has the keys to the hour and minute hands on life's clock. When it is time for him to go he will go peacefully. Don't be hard on yourself about the thoughts, just when they come up ask God for forgiveness and move on. It is not easy, I know, I am there with you, I feel your pain 24/7.
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Thank you all. My husband is still with us. He seems to doing as well as he can with the hand he was dealt. He seems more healthy since May. I continue to take him out when I can. Last year I purchased an old wheelchair van and had some work done to it so I could take him place we could not go with the local handicap van service. This Thanksgiving I'm bringing home for dinner with the whole family. He wants to come home the day before, even though there isn't any place for him to stay except the wheelchair! He's also been asking me for the last few months if I have talked to nurses to come stay with him. (I haven't). Makes feel guilty because I don't want to come home and play nurse maid after working all day. I don't have a life now, I definately wouldn't have one if he came home. He's had so many health issues that I feel being in the nursing home is the best for him and me. Like one of the directors of the nursing home told me tonight, he's lucky to have me because he gets to see family so much and he gets to go out more than any other patient there. I hope I'm doing the right thing. Love the guy to death and he's been so good to us. He doesn't deserve to have this to have happened to him. Thank you all for your support.
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I guess we need to feel compassion for your husband, trapped in his own body which is failing him little by little. But that process is out of our hands; we pray he will have an easy death. You are not 'out of our hands'. I hope you will search and find support in your community and take care of yourself. Find the professional help you will want for your own well being. We all wish you the best at this difficult time.
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Slkanger: The first reaction that I had against this very unfortunate situation was against YOU for feeling so ambivalent toward your husband. Then I re-read your post. I read it several times including the original. In a calmer state, I find that you are resentful that you feel you have to allow your husband a place in your heart, your home and an occasional time in your life. Get thee to a psychologist, a counselor, a cleric or anyone of your choosing to whom you can pour out you feelings. Perhaps you can sort out what's happening here. Of course you have to look out for yourself, and rightly so. HOWEVER, your husband, a person, has a right to life also, what's left of it. If you do not feel comfortable visitng with him, bringing him home, or doing things for him, THEN DON'T. Unless you suspect abuse, he will be just fine in the nursing home or hospice. Don't play it both ways. Come to grips with your real feelings. Life is not kind in the end; that's why we pray for ourselves "now and at the hour of our death". If you do not manage your feelings about him and play it straight, you are in for a bad guilt trip aftter he passes.
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91 year old husband in skilled nursing facility with colorectal cancer costs $16000 a month. Already has been dependent 4 years and there is no end in sight. His mother lived with stroke to be 95. This guy will bankrupt us even with long term care insurance. Going to elder care attorney to see if there is some way to get this man off my back. Wish he would DIE cause we both have NO LIFE WORTH LIVING.
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