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sl: I want to also share this with you. My husband and I have faced the care of my parents for the past 6 1/2 years. It's been very difficult and confining for us and it has robbed us of the freedom we had looked forward to in retirement. My husband is adamant that should he be in the shape my dad is in, he just wants to be allowed to die. He's also insistent that I should place him in a nursing home if he is incapacitated. He does not want me to have the burden of his care. That's how he sees it and I respect his thoughts on the matter.

Here's where I find a conflict. If my husband was in a nursing home he would not be able to say let me die. If I brought him home, I could give him that wish. I could withhold medications if he told his doc that it was his wish. I could get his doc to agree to comfort care only and not treat pneumonia or other life threatening ailments. With the help of Hospice I could keep him comfortable.

I don't know what your husband's wishes are and you haven't really stated that, just that he wants to come home.

I agree that Mursa is a concern and I don't fault you in any way for not wanting to bring him home. It's been 2 1/2 years and you are seeing things differently now. I probably would too. It makes sense that you don't want to subject yourself to an invasive illness.

A few people on this thread have talked about divorce. If that benefits you financially then it is a consideration you should review. One of the benefits I felt you would have in bringing him home was financial also. You need some legal help to decide what is best for you financially under the circumstances.

I wish you the best. You did all you could and put 150% effort into trying to get him well. My heart goes out to you. Let the past go and do what you have to do to make your life more manageable, both mentally and financially.

Again, I support your decision. It's yours to make so just know I'm behind you whatever you decide. Hugs, Cattails.
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Slkangler, I wish I could give you the perfect answer. However, I am looking for the same answer. My husband had a biopsy at Emory University hospital 17 yrs years ago. He never walked again without a walker, then went to hoveround and now cannot walk at all. Just recently he can't even get to the hoveround from the sofa or bed. He has had numerous medical problems because he is numb from his ribs down. I have always made sure he stayed as independant as possible (making sandwiches, taking bath etc) But he has gotten to the point that he can no longer do any of that. I have congestive heart failure and my heart doctor told me today he worrying about me cause the top part of my heart is barely beating. He is afraid of a stroke. My husband expects me to do everything for him. I push, pull, get him up when he falls, help him with his bathroom neccesties. He just doesn't get the fact it is killing me. He is so miserable with bed sores, pain, depresstion . Always a frown on his face. He never wants to be around people because he is also deaf in one ear and partially in the other. I manage to get him to doctors(by myself). That is his only outings. I too feel guility wondering if he would be happier to be with his father in heaven and it would probably extend my time on earth. I am just tired after 17 yrs and no help. I worked until a yr ago. I had to retire because I just got where I couldn't do it all. When he got sick we had a 13 yr old son who I finished raising. He helped so much and did things for his dad a 13 yr old shouldn't have to do. He now is 29 with a family of his own and I just can't find it in my heart to worry him with all this. Tonight it took an hour to get him ready for bed and he moaned the whole time. I am looking for assisted living that we both could go to together. He would be so scared without me. They are way more than we can afford. This is only a quick story...the real story is so much longer. You and I may not have the answers but maybe we can support each other on this website. I know I sure could use it. Keep your chin up...if God brings you to it he will bring your through it:)
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I do know how you feel. In 1987my husband and father of our 5 year old was instantly paralyzed in a silly bicycle accident. Level C4&5. Could only move his head. Begged me to help him die. Felt bad because I couldn't. He went thru a VA hospitalization for a wellness checkup and came out with a feeding . tube. Also had ended up in ICU with a 90% chance to die. But he didn't. Told him to never ask me to help him die again because he had had his chance and pulled thru. Must be SOME reason he's still alive. He was a dry alcoholic. Often verbally abusive. I took care of him at home til he died in 1996. Most people have an alcoholic in their life or past that qualifies them for AlAnon. It is a GREAT group for friends and family of alcoholics. 12 Step Program. Saved my life (my family's too!) Teaches a new way of thinking and you learn to take care of yourself in a mentally healthy way. I urge to seek sanctuary at these meetings. I also agree that counseling is a must if you are not already there. antidepressants areSO helpful. Was your husband a veteran? Paralyzed Veterans of America is a wonderful organization.Helps with supplies , meds, etc. Check with VA. You also may be wanting to get a divorce. Divorce rates in these situations are high. The stress, feeling of isolation, sometimes hopelessness are overwhelming. Perhaps divorce is what you need. Talk to someone(professional) about this. It would not make you a "bad" person. Everyone is different and has their own level of ability to stay. It's a very personal thing and only you can make the decision. You've gotten some very good advice here. From all of us, "Take what you like and leave the rest.". Oh! I assumed he was already on an antidepressant. If he is not, get him on one ASAP. There are so many people out there who are or have been in your shoes. Look for groups for support. To paraphrase an AlAnon saying, "You may not like us but we already love you because we have walked in your shoes, we've had your thoughts, we've cried your tears. Know that God is holding you in his arms to comfort you. Peace and love to you!
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Slkanger: Did you understand what I said about knowing when the moment is right to end a life. I think that might be the most important thing I tried to explain. I hope it was helpful. Cattails.
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Slkanger: I hear what you are saying. It's your choice and whatever decision you make I will support it 100 percent. Love and best wishes, Cattails.
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Thank you for your comments. I don't know if I could handle having him at home and work too. At first there was nothing more that I wanted than to have him come home again. He does get to come home to visit time to time. I bought an old wheelchair van last July and I take him out 1-3 times a month, weather permitting. I also found a portable ramp that we can use at the back door. Our house is not handicap accessible either. He was home last Xmas too. So it isn't like he never gets to go anywhere. He has had a lot of other health problems too and I know I wouldn't be able to handle all of that either if he was at home. So much to think about. But for right now, I think he's better off where he's at. He's had multiple infections in his bladder and urine plus he has MURSA. Which is a risk to everyone too.
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slkanger: It seems to me that your biggest regret was making an effort to save your husband's life after he suffered a massive stroke. As you said, you don't feel you honored the wishes of his living will.

The problem is everyone says they don't want to live under certain circumstances. No one wants to be bedridden and unable to speak, etc, etc, and have a poor prognosis for recovery. Nevertheless, picking the moment to say, that's it, let him or her die, is never easy. PICKING THE MOMENT IS ALWAYS THE ISSUE. The very smartest of people, and this could even include doctors, who want in every fiber of their being to honor the wishes of a spouse of loved one who has been struck a critical blow struggle with decision. Unless the person in brain dead, it's hard to know if NOW is the time. This is especially true if someone is relatively young, like your husband was when he suffered his stroke.

First of all, it's a huge shock. Then you may wonder if he can recover enough to still enjoy life. We don't have to be perfectly healthy to be happy. And let's not forget that he is close to retirement age and you may have wondered if his early retirement would allow the both of you to live at home and the demands of his daily life would be lessened as a result. And let's not forget that you love this man and you don't want to do the wrong thing. Had he come out of this with a limp and some other minor issues, you would have felt you made the right decision. It's only in retrospect that we see the reality of another's ability to recover.

My dad suffered a significant stroke last July. We made decisions based on a number of factors, one was how hard he was trying to get better. He was so determined and it set the stage for our response. He was 88 years old then and will 90 this September. He lives with us now and is well cared for, but his quality of life is pretty slim. He can walk with a walker if we guide him and assist his balance. His speech is badly impaired and he has swallowing issues. He can feed himself, but that is the extent of his abilities. In retrospect, I wish he would have passed on when the stroke happened. Maybe he would have eventually if we had not gone ahead with the feeding tube, something that I NEVER thought I would do.

Now, my dad was 88 years old when he suffered this stroke. Your husband was 61 years old. I'm not stupid and neither are you. I respect quality of life and have no interest in keeping someone going forever. I know you felt that way too. I would not have wanted my dad to live the life he is living now and in RETROSPECT I would not have allowed it. Still, without understanding the result, I would have always questioned my decision and felt that I let him down. We both did what we felt we had to do.

It's easy to say to ourselves, "Well, let's give it a little more time. Maybe they will get better. Maybe we can turn the corner on this." At the time, this makes complete sense AND sometimes it works out. I know you were just trying to give your husband a shot at getting better and having a good life, even if it was more limited. Perfection is not required for happiness.

I hope you can let the guilt of your decision go. What's done is done and you made the best decisions you could at the time. If it would have turned out more in his favor, then you would not be upset with yourself. Let it go and forgive yourself. You have no idea how many people have struggled with the same choices you had to make. Some are happy with them and some are not. We are not God and we can't see the future. We live in the moment and do our best and that's all we can do. If it makes you feel better, let me just say, "You are forgiven, you are loved and you are worthy."

I'd like to talk a bit about your current situation. There are a couple of options as I see it. These are the things I would be thinking about in your situation....if it was me. I can only speak about how I think I might act, so please feel free to disregard anything I say here, because it is more about me than you.

If your husband lived at home with you, it's entirely possible that he would qualify for Hospice care. As long as he is in the nursing home, they will do everything they need to do to keep him going, short of disregarding the DNR order. If he is at home and your doctor's order are strictly comfort care, his life will end at some point. If you have him home with you, the both of you can discuss this in the comfort of your home and he has more options than he does in the nursing home.
This will give you the opportunity to honor his wish to come home and also honor any wishes he has after he comes home.

You said he is in Nebraska and you are in Ohio and that the Medicaid laws vary in both states. My suggestion would be to ask the Nebraska nursing home to transfer him to a Ohio nursing home. Tell them that he needs to stay on Medicaid and that you need their help to get the paper work done so he can qualify in Ohio. Do what needs to be done. You may need to pick a NH in Ohio and have their social worker help you too. I think this is doable. Once that is resolved and he is on Medicaid in Ohio, you can bring him home and make changes to his care. He will still qualify for Medicaid, but he will not be in the system of NH interference with his right to die. He will not have to undergo treatment and surgeries that are beyond his wishes and continue to be kept going for however long it can be managed.

If this was my husband, I would want to honor his wish to come home. My husband would not want to live like this either. He would want to come home, be free of the institutionalized care and make decisions for himself. I would do my best to give him that option.

So there are my thoughts. You know more about your circumstances, what you can handle and what you can't. It's just a little more food for thought. Take it for what it's worth. If any of it seems helpful then I'm glad I posted. If not, then you know best.

My heartfelt best wishes and love to you, Cattails.
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Again, I cannot add too much to this excellent advice, but please just know that you are not alone. There are so, many of us now in similar situations. Just knowing that sometimes gets me through the next day, or hour, or minute, depending on the day. My physician recommended getting in contact with social services at the hospital. A lot of times they are the go-to people for services available. The other thing I would say, is be as honest as you possibly can with them. (and also with your friends and family) I often find myself saying things I think people want to hear, just because I don't want them to think I cannot handle it... but guess what? I can't! So I put my ego aside, and let them in on how difficult it has been, and how I was scared for my mental health, and now we are in the process of making the necessary changes. All of us make sacrifices for sure in this situation. But no one expects you to sacrifice yourself.. completely. Good luck and keep us posted.
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My husband and I both had living wills made up in 1989. Now I feel like I didn't do right because of it when he had the stroke. The nursing home knows there's a DNR on him. I live in one Iowa and he's in the nursing home in Nebraska. So he's on medicaid in Nebraska. If he comes home, he'd have to apply for medicaid in Iowa. More red tape. It was hell getting him on in Nebraska and each state is different. I've been told that it's easier to get on it in Ne than Ia. Oh well, life goes on. I truly believe he wouldn't be able to do the things he does today if it wasn't for me. I encouraged him to try to eat some foods etc. We finally were able to get rid of the feeding tube because of this. And also the trak he had in. He finally was able to get rid of that after 51 weeks. I think I worked with him on so many things to get him to where he is today. I just hate seeing him like this. I know he'll never be the same again. Guess that's the hardest part.
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Your situation is so sad and is having a large affect on you, but what you are feeling is OK. I can understand your feelings as I went through caretaking with my Mother for my Father who has Alzheimers.There might be a Council on Aging in your area that you could apply for help for a caregiver at no charge if he does come home. They do various chores and that would give you some time to yourself.
Is your husband considered competent to make decisions? If so, you might want to do a living will for him, that he signs. You can find those forms at your state website or other places.Give one to all his doctors and if he is at a point of unlikely survival, the doctors will let you know. He will need 2 witness to sign and they can't be related. I just made one for myself and my health is fair, but it is being done so my family doesn't have to agonize at that time.
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Felines 5! I experienced many emotions reading your posts. Sometimes God takes care of us when we can no longer care for ourselves let alone our loved ones. I'm starting to believe that God gives us just enough pain so that we become willing to see the benefit of letting go. We are able to see that they as well as us are better off. We come to believe they are in a better place! They are in peace and so are we! Bless you!
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It can be very complicated to deal with Medicaid community spouse/spousal impoverishment and/or spend down rules. They do not typically pay the entire cost of the nursing home care - they leave you with barely enough to live on, and not enough to cover your own medical bills. They do not cover assisted living rather than skilled nursing even though the monthly cost may be lower. And even then, they will be alert for any "gifting" to transfer assets. They cannot touch life insurance money directly however. This is why so many families are coping with home care - or trying to - even when it is humanly almost impossible to do provide without help. In some situations, significant home care may be covered as an alternative to facility care, via a community waiver or similar program.

With hospitalizations of longer than 72 hours, Medicare coverage may kick in for up to 100 days if any progress in a program of rehabiliation can be demonstrated, and at least you are not supposed to get stuck with the hospital bills or the medication costs themselves.

Its hard, very hard, to keep doing what's best for a loved one to the best of your ability and to avoid having regrets or wondering if you could have done something different. It is only human to find yourself wishing for a way out. I know that no one just volunteers to be a sounding board for all that and to help sort through the realities of what options you really might have. An eldercare lawyer who offers low cost or free initial consultation or even an insurance expert who sells Medicare supplements might be a feasible way to get real help, if the facility social worker won't take the time to explain anything in terms of other choices. Now we are here for you on AgingCare and have maybe "been there done that" and for sure can keep you and hubby in our hearts and prayers, I hope that's "something" and we sure hope to hear more of your story, whatever you feel able to share...with some e-hugs, too...
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Everyone prior has said it all and nothing I can add is any different. I will tell you that my neighbors have been dealing with a similiar situation for 15 years. The father/husband had a few tia's and over the years he has just gotten worse he has been bedbound for i don't know how long. he can't talk. he wears diapers. he gets pneumonia all the time and they put him on antibiotics so he doesn't die of penumonia. Their blessing they have d augher, caretaker and wife to take care of him. Please know one thing. The nursing home is taking care of your husband. Take a breath and maybe only visit twice this week and next and use that extra day to just rest....it was hard for me to have fun if i had a break so I just slept when someone gave me respite. i told you this story just to let you know you are not alone. Please seek consulatation as others have suggested for the financial issues. We are here for you
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Get ahold of an elder law attorney about your situation. He may be able to find some help for you through the system and find a way to preserve more $$ for you to help support yourself. You may also be better off selling your house and renting an affordable apartment that does not have the over head and maintenance of a house?? That is one thing we are looking at ourselves right now. Your feelings are not unusual. When our loved ones are in pian and we know they are suffering and there is no way they are going to get better it is hard not to ask God to take them home. My Mom prays that exact thing out loud to us all the time for God to take her home. It is hard to hear and yet I find myself praying with her for the same thing. Do not feel guilty about wanting your husband to die. It is a very normal response to a really tough situation. that is why Oregon has passed the assisted suicide law over and over again. Everyone should have the right to decide when they no longer have a quality of life left that should be sustained. Our medical system can patch us up and keep us going way too long in many cases but the life they leave us with is not what any of us want. Sometimes death is more than welcome both for the patient and also for their families. Please do talk with an Elder Law Attorney to get some help with the financial part of this.
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My heart goes out to you. I dont know which state you live in, i live in va. social services here has a program like if you take him home, they will pay you to take care of him. they pay 42 hours a week and not bad money, plus you get to keep his pension and disability. I have a freind that is taking care of his mother like that. I dont know much about the program myself, but it would be worth your time to go to social services and talk to them and if they have this program and you are able to take care of him yourself, financially you would end up better off. I am so sorry that i cannot come an help u and give you lots of hugs to make you feel better. it is so natural to feel how you are feeling. you see him suffer and he doesnt have a life any more, no quality or productivity that is. and his frends have deserted him and you it seems. they are not even worth talking to if that is the way they are leaving you. i have already made it clear to my husband and children that if anything happens to me like that, they are not to keep me living cause that isnt the way you are supposed to live. it is a lonely and hurtful life full of stress and irratation. i will pray for you and your husband, and if and when your husband passes, dont feel guilty if you dont cry and you feel a sense of releif. that is just natural. we are designed to take so much stress. they say god wont put so much on you that you cannot handle it, but other people can. i hope they have a program like that in your state. much love to you.
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My husband also suffered a massive ischemic stroke (Oct.1 2010) at the age of 52 that left his whole right side paralyzed and with speech difficulties. He was in Swedish hospital for 3 weeks and then moved to a nursing home. After less than 24 hours in a nursing home I saw how bad it was and brought him home and took care of him myself. I exhausted every financial resource we had. My husband suffered another stroke (Oct.15,2011) and I just didn't think it could get any worse. We lost all our investment properties, the bank called us on all our notes and I had to let it all go. I've managed to hold onto our home. All the while I've been self-employed. My husband and I owned our own building company and I had to close it down and re-open another to get cost down while focusing on what I can handle in the field. I also have the same thoughts your experiencing but I have to remember that it's not all about me. My husband is a beautiful man with an awesome soul. We are alive and living for "The Experience" of living, loving and caring for each other in all ways. It may not be the way we would like it to be but we came into this life without road maps and crystal balls and no guarantees about anything. I vowed to be his wife, to care for him in sickness and health, for richer or poorer. Living can go different ways, it could have been me having the stroke and being in his shoes. You said "My husband wants to come home to live". Why are you stopping him? The hardest realization for me was when I realized "I" was my husbands biggest disability and maybe he was better off without me.
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Dear Slkanger, what a difficult life experience you are having, but all that I have read tells me your thoughts are very normal and I hope you can relieve yourself a little of these guilty feelings as I know from my own experience they eat away at you and cause havoc with your own health and peace. You have such heavy load and it doesn't sound like you will be relieved of this anny too soo . Advice is cheap when you are in so much pain. I have experienced some of these feelings with my caring for my Mother, but your load is much heavier so it is no wonder you have the thought you are struggling with. It has helped me to try to put my mind elsewhere, to stay in the moment and try not to project your thinking into the years ahead. When I get away of my situation I work hard at looking at the birds, the sky, breathing the fresh air - anything that will place my mind in a more peaceful place. We cannot change the reality, but we can only change how we look at the moments that are happening right now. I struggle with keeping my head from going to that dark place of dispair daily - and it is work, but may be the only way I can salvage myself. I don't mean this as advice for you, but only mean it as what sometimes works for me... But not always. We all wish our caregiving responsibilities would end so we can have a life of our own, but we cannot change what has been placed on our plate. Take a moment and wrap your arms around yourself and remind yourself what a good caring person you are and tell yourself you will make it, one moment at a time. That is what I have to do sometimes.
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Dear Friend--I can feel your stress and your pain, and no, you should not feel badly with the thoughts you are having. They are normal feelings for someone so overwhelmed. You are sticking to your wedding vows and "til death do you part'' and it is alot of emotion to wrestle with right now. Of course, having the money to deal with it would make it so much easier. There is an organization called "Modest Needs" (modestneeds.org) that I discovered some years ago and thank the good Lord, I've made donations to it, but have never applied for help myself. Just google modest needs and choose that link that invites you to apply for help. There are organizations that match the funds made by ordinary people's donation. I know when my father had a stroke (at 75) I was not his caregiver yet it ran me ragged not only going back and forth from state to state to see him, but seeing him in that condition and knowing he hated being incapacitated used to make me wish that the good Lord would take away his suffering and bring him home to heaven. When the Lord did choose to do that, then I felt terrible that I had wished such a thing! It's all part of the process we humans go through but guilt is a WASTED EMOTION. Do the best you can with what you have and rely on your faith. I will be praying for you, certainly. Good luck.
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CALL Medicaid at once. Get a complete CMS from them. Go over every bill and every payment to the Nursing Home.. Ask the Nursing Home to allow the payments from Medicaid to suffice. If they say no, then deal with it. You work full time. Let the "limbs" from the trees fall where they may. If they fall on your house, then call your insurance company and make a claim. Cut back on the hours that you visit your husband in the N.H. You don't like going there, so why the charade?
Try to find some help among your friends and possibly your family. SOMEONE should reach out to you....a co-worker, a neighbor...a church member, someone.
Finally, I ask that you try to find peace in your heart. Your husband will die some day, and your life will change. He's only 61, so you may have to re-arrange your life to accomodate him somehow, right now. An ischemic stroke is devastating.
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Why are you feeling this way? Because you are human. Find a support group...now! And ASK for help from friends. Yes, it's easier for friends and family to do nothing; but when you actually ASK them, well that will 'separate the men from the boys' so to speak. No one, not even you can do it all and the stress will compromise your health if you continue on this current path. Next, schedule a short weekend away for yourself...anywhere. Stay w/ friends or family in another city. Take the bus...and remember to eat healthfully!!! Best Wishes!
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My thoughts and prayers are with you. I have had these same thoughts about my Mother. She is 97 , in a rehab/ skilled nursing facility. It is costing a fortune; I know my parents saved for a rainy day and this is it but it is difficult to write those checks knowing it is going very fast. She is in a wheelchair and has dementia ; she knows us but is certainly not the woman she always was. People on this list certainly know how you are feeling as those feelings are shared here. Please get some help ; try not to have those feelings of guilt. You have certainly shown your love to your husband; also don't second guess; it doesn't do any good. Hugs to you. Keep us posted.
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Concerning being on Medicaid and still paying out of pocket. I know from personal experience that even when a person is receiving Medicaid, it is required that all monthly income except for $40[ this may be different in different tates] be paid to the NH, then Medicaid pays the rest of the bill - except Medicaid doesn't pay the full amount the NH charges. For example, a nursing home's daily rate might be $ 251.00, Medicaid only allows $195.00 . Resident might pay $95., Medicaid $100. NH has to "eat" the remainder. Some NHs have yearly fundraisers to help make up the difference.
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This not unique situation is why we must have health care reform. Now there are two victims if not more. Financialy there my be help; is divorce an option? Emotionally is harder; reach out for help before your situation worsens.
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Please don't feel bad about how you feel, it is natural to feel that way, my mom lives with me and has for 7 years and has dementia, most days make my life hell, I don't even feel like I have a life anymore, am on 4 mg xanax, going to look for a skilled nursing facility and apply to medicaid for her, I can't do this anymore either, apply for medicaid for your husband, that will take some of the stress off of you and don't feel guilty abut anything, you deserve to have a life too, much prayers and hugs
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I agree with quality over quanity. My husband had a stent put into his aorta and 24 hours later suffered a terrible stroke. His kidneys were also damaged and he was pouring out blood into his cd bag and he had to be transfused twice. He couldn't swallow and he was fed through a tube into his stomach. He also couldn't walk. He stayed in the hospital for 2 months and then was placed into a rehab for one month and then back to the hospital. At some point I was told i had to take him home. I was so scared because I suffer from scoliosis, stenosis and degenaritive disc decease and I didn't know how I would be able to take care of him. It was suggested that I put him in a nursing home. I checked out one in my area and just about ran out of there. I couldn't do that to him. The hospital he was in was a two hour trip and I went there every other day. On my last visit to the hospital while he was in bed he motioned for me to come close to his mouth, he then proceeded to tell me that he always loved me and always would. When I left him that day I cried all the way home during the two hour trip. I was in a quandry, I didn't know what to do. I was being charged for his hospital stay because his insurance didn't cover that length of time. Money that was saved was gone. Then one morning around 10:30am I felt sick to my stomach and dizzy. I almost fell into my chair. Little did I know that he had just died. I went to the hospital and was told he expired at 10:30am. His body was taken to a local funeral home to be cremated. I left there and drove home. I didn't cry. I was sad he was gone but relieved that he was finally out of his misery and the problem was solved. It may sound heartless of me to say that but it's true. He has been gone now for close to 6 years and I've adjusted well into being alone. I have 5 cats and they are my family. Please don't be so hard on yourself. What you are feeling is very human. I wish I could pour you a cup of coffee and give you comfort. You are not alone.
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bilmo2012: I agree with you 100%. I don't think Jack Kevorkian was a killer either. He was doing what people wanted to have done because they were tired of the suffering they were going through. We are kinder to our pets when it comes to this stuff. Last week some friends came home to their dog who had suffered a stroke. Took the dog to the vet and they put it out of its misery. I think that's why this has taken such a toll on me. It's been 2 1/2 yrs of this. One health issue after another and he'll never be the same again.
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slkanger: I'm assuming that you are getting billed from the nursing home because there is some kind of spend down here. Can you explain more about that?

My heart goes out to you. You and your husband have suffered so many losses and now your are just trying to salvage some kind of life of your own.

i don't know how to advise you. You've been dealt a difficult hand. If you brought your husband home, you could get in home help via medicaid and might be able to increase your income, since the nursing home costs would no longer apply. Still you would have to deal with his care on some level and hire more help than medicaid could provide in home so you can work.

Tell us more about the financial nitty gritty of the cost of nursing home. I'm so sorry for you. I can't imagine myself in your shoes. Love, Cattails.
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Slkanger, please don't be so hard on yourself. You're in a stressful situation at the moment and it doesn't sound like it will get better anytime soon. First thing to remember is that someone cares about you! I know I speak for everyone on this website. We feel your pain and can certainly identify with you.

First thing I want to say is that you did the right thing in trying to keep him alive. Isn't that what we all do and wouldn't he have done the same for you? That's everyone's goal - to keep our loved ones with us as long as we can! Kudos to you my dear! Please stop second guessing yourself and please dump the guilt!

I'm going to simply throw this thought to you as it is the first thing that came to my mind after reading your post. Perhaps you should seek some legal advice in this situation. I know that attorney fees are high but maybe you can find Legal Aid in your area. This might free your mind to some degree and give you a little peace of mind in the financial area of your situation. When we have creditors breathing down our necks, it makes things pretty chaotic! Look into that for yourself!

As far as friends visiting, I think to some degree that's pretty normal. Many times our friends simply don't know what to say to make things better. As well, it's scary to see something like that happen to someone close to us - perhaps it could happen to us as well? Out of sight, out of mind! That doesn't let anyone off the hook for not visiting - it's just the way some people are! It's nothing personal and please don't see it that way. Sometimes we just have to be blunt and ask those close to us for what we need.

Of course your husband doesn't like living like this! Who would? I'm sure he must know how hard your life has become and he, most likely, feels guilty that he has burden you!

You haven't mentioned family as a support system - hopefully this is an option. In addition, hospitals have many good support groups available. You might check to see what's offered. No one can go through these situations alone! Please get some help.

Finally, at the risk of sounding trite, look hard for one thing in your life that you are grateful for! It may be nothing more than this website! It may be something very, very small. It's just that everyone on this earth has something good and we may have to search very hard to find it. When we do find it and focus on it, it will become more. Remember the mustard seed!

Be well my friend and I will be thinking of you.
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slknanger - My heart breaks for you and all you have and are going through. You are drained emotionally, physically and on top of that you have the financial burden. You really need someone to talk to about this - don't go it alone it is too difficult. Do you or have you seen a therapist? They can help with coping skills. You said this week has gotten worse for you. Even try going to Elder Services in your town as they have support groups and people that can help you.

I'm so sorry you don't have a support system and that your friends don't visit your husband. You will find a strong support system on this site and many people to relate to. It is a lot of stress to handle on your own.

Sending you hugs and hugs and more hugs - blessings to you and hope things get a little better. Thinking of you and keeping you in my prayers. Take care.
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I don't understand why the nursing home is trying to bill you if he is on Medicaid ...?

But I do understand your stress and your anguish and your guilt. What an awful, awful situation to be dumped into. You are continuing to do your best to love and care for your husband. That is what counts. Your wish that things were different, your uncertainty whether keeping him alive after the stroke was a good thing, and even your wish for his death now do not seem unnatural to me.

With all of the focus on taking care of Husband, it is hard to take care of yourself, but it is essential. I suggest counselling for you. Ask the social worker where your husband is for resources that you can afford and that insurance covers. Your painful feelings, though natural, are overwhelming you. You deserve help. Unfortunately it doesn't look like anyone is going to come along and provide that or even suggest it, so it is one more thing to put on your already over-crowded task list. But please put it at the top -- you need some relief from this stress. Therapy can help.
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