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My husband had a massive stroke 2 1/2 yrs. ago at age 61. He never should have survived but they pulled him thru. He's paralyzed, speech is affected too. He's had one health crisis after another. Last week he had to have a kidney removed. He's been in and out of the hospital so much these last few months. He lives in a nursing home but I go to see him 2-3 times a week. When he's in the hospital I go daily. He's been telling me he wants to come home to live. I work full time and try to manage my home, laundry, mowing etc. myself. I can't afford to hire anyone. I feel like I did wrong in keeping him alive when he had he stroke. He doesn't like living this way either. I've been on anti depressants for over 2 yrs. But lately, I just can't take it any more. I feel so guilty for feeling like this. I was there every day to see him for the first year and then had to cut back. Sometimes I dread going there. I had to get him on Medicaid to help pay for the nursing home. He got SS Disability after 6 months but that goes towards his care as well as the retirement he was getting. I'm tying to survive on what I make and when I have repairs to my vehicle which was over $1100 and a emergency at home, I don't have the extra money to fix it. Twice I've had to short the payment to the nursing home because of emergencies.I had to have some limbs taken off a tree last week at home tha were cracking in the wind and going to fall on my house. That was over $700 alone. Now the nursing home is on my case for not paying them and threatening to take approprate action to collect the money. So much stress....I don't know how much more I can take. None of our friends go to visit him. Just me. Even with him in the hospital, no one has stopped by. I just want to have a life of mine own again. This last week these feelings have gotten worse.

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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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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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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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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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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 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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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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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 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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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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