I have my living will all set, & ready to go. Hubby has a "legal guardian" his Mom. I don't feel she's been there for us. I'm disappointed w/ his side of family. He doesn't really say what he wants. At one point, in 06, he drank himself to death, literally. I found him, & did CPR until paramedics arrived. Then, he was in a coma, & they were saying he'd be "brain-dead" or worse. He came out of that one okay. Some issues. He managed to stay sober/smoke free for 2 yrs. He did say he'd want to be kept alive if there's any hope. Unlike me! He'd even want a feeding tube, etc. Other than that...he doesn't really say what he believes. I don't think he really knows. His Schizophrenia, I guess! His Mom would do a traditional Catholic service, I'm sure. We're living apart right now, but, still see each other. Spent the holiday together. He's still smoking/drinking. We looked into those E-cigarettes today. I think they're a great invention. He wasn't ready to spend the $$ yet, though, will save him $$ & health in long run. His emphysema's worsened, too. I'm thinking of moving in the place next door to him. I'll still be there, but, won't have daily household "stuff" to deal with.

anny; 'Bought the software and thought you'd get it done this weekend, - didn't happen' Boy do I know that scenario. I'm getting better at not being disappointed with myself when i only get a fraction of my 'to-do'list done. I was surprised at how depressed I felt this Holiday Weekend. Found out that the rest of his family had a big cookout and lots of fun. Not being part of it all is hard. Just got off the phone with his mother. Since his injury, we've only been to church twice. Negotiating our stairs and the churches large crowded parking lot  is very hard. He doesn't have the energy to go through what has become an hour and a half ordeal. We've had to leave early when we went. WE both attended regularly when he was well. My mother in law asked me why I don't take him to church, reminding me that he used to be very "religious". The tone sounded like I am at fault. Well, I used to be very "religious" to, - attending several times weekly. I had hoped that after a couple years of me caregiving that they would become more appreciative, supportive and understanding, - but it's not happening. His parents travel between and pay the taxes on several homes in several States, buying new cars every two years. We live on his SS Disability  and my SS - no retirement, no worker's comp, no insurance. Our conversation ended with her asking again about getting repaid for a $5,000 loan she says she gave him 15 yrs ago for his business. Not only don't I know anything about the existance of such a loan, but my husband denies it, and we're not ever going to be in a position to repay regardless. If it was made, it was before I met him so I can only go by what he says. She's been bringing this subject up since his accident - in fact in the ER when they were trying to stablize him and get a breathing tube down his throat. He was clinically dead, and she was asking me if she could be repaid from the sale of our home (I kid you all not). $5,000 is not pennies, but it's not a fortune either. Last year she was threatening a lien on our home.  I just don't understand parents who would upset their severely disabled son with such a subject. Do they think they'll live forever? His mom is close to 90. Why don't they just cut back on their vacations or sell their beach house.  When the injury happened, we had some savings, but I've told them that uncovered medical and hospital,  no employment , and making our house disability accessable,  - ate that away the first year.  I do know that they've heard urban legends about the huge SSDI checks, but that is only true for people who have had to wait and reapeal for years. Those people eventually get a huge check for back months when they are approved. Those people were also either living on welfare or they had another way to pay the bills while waiting. Severly injured like my husband are fast tracked and approved within 9 mos. Subtract the first 5 mos which is policy, and the SSDI check is nothing special.  If I hadn't sold my car and had some savings, we wouldn't have made it through the first year. Does anybody out there have any similar experiences? because mine's a whopper! We like to imagine parents as being generous and nurturing in a crisis, but are there any other tales of relatives who are Simon Legrees? Meanwhile I've been donating my time Caregiving, and have had 2 restaurant meals in the last year. What am I missing to this picture? Is there something I don't see? If it were my son and I had even just one home, I would have been at the bank the next day arranging for a reverse mortgage I would be worying about him and how he was going to survive maybe 35 more years as a semi invalid. I'd love to hear feed back. maybe share your own horror stories. I will post this one anonymously Thank you.

I do have a lot of regrets...should have's, etc. But, getting better w/ this stuff. I still feel that he & others should have.......many things. Today, he told me his case manager said:"I'm so proud of you for getting out of an abusive relationship". This hurts, & angers me. This person only met him like 3 times (big turnover of these positions), & never met me! People did not see what went on for the last 10 yrs. & could never understand what it's like to live with someone like this. We had the same Psychiatrist, too. We even had a couple's counselor for awhile. Now, he told me the Shrink has left, too. She's the only one who heard both sides. She had been seeing us separately for 3 yrs. She's the one who said I was "co-dependent", & said I had a decision to make. I made it, & now have to "process" it with a new Dr.??? He's okay. Lovin' his new place. As usual, I'm the one paying for expensive place. His family still isn't helping much. As usual...I'm the only one he can count on! I'm upset w/ his Mom (legal guardian) right now. I fear for his well-being if something ever happened to me. I'm thinking of renting place next to him. I'll be there, but, have own space!

Yes, I thought he'd receive more help if living alone. Not happening! As usual, I'm the only dependable person in his life. May end up renting the place next to him. I'd still be there, yet, have my own space, too. His Mom (legal guardian) will have to step-up & help more. She's not really showing me anything I'm confident with at this point. It really hurts. He lives closer to them now, & they haven't been there much for either of us, even when we ask. If I take this place, I'll have to set some ground rules. I simply can't do all that I had been doing for past 10 yrs. anymore.

Spokula: He was thrown of some equipment while working on a project of our own. It was a situation where for various reason no insurance covered. He was thrown about 15 feet and had severe subdural intracranial bleeding. his breathing was shutting down when I found him unconscious. He was in a coma *unresponsive state ) for 2 weeks. I brought him home after 7 mos and I've been his sole caregiver since.

In what way are you associated with TBI's?  Is your husband able to live at home? My mother had schizophrenia also. She was one of the unlucky one who was given a lobotomy in a NY State Psychiatric Hospital. Early '50's. Just a tragedy. She was beautiful, intelligent, talented and a student at Rice University when it hit her the 2nd time. When she came home from her second hospitalization, planning to complete her education, she learned that her fiance' had married someone else. The disease first became apparent  when she was 16. It caused the split up between my parents. She was institutionalized the 3rd and final time when I was a baby.  When I saw Splendor in the Grass and One Flew Over the Coocoos Nest, there were so many paralell similarities that I still can't sit through an entire showing of either movie. .

I am so sorry his family is this way. Very sad. Plus, I guess all this church-going hasn't taught them much! They should be ashamed & embarressed. You stay strong. I'd have as little contact w/ them as possible. They don't sound stable, or healthy for either of you. Humans Suck!

Spokula; We're a little out of syc here. But, quick word about the e-cigs. As I st her, i am holding mine. These things are marvelous. That's why the tobacco companies will loby to make them illegal.

I got one for M and one for me 2 months ago. I was afraid my hubby would set the bed on fire and burn us bothup. I was frightened when he's have a cigarette in bed, especially at night. We still have burn holes in all our sheets and blankets. Now, there is nothing combustable. Every nursing home and fire dept should be told You have to tinker with them, but they are the most fun I've had (don't mean to sound crude, but ) since my wedding night :-). I'll get back with more of our adventure. I just want to say that it's great not having my lungs filled with 4000 burning chemicals. My husbands skin looks rosy now.  He's not burning little holes in his pajamas, and the cost is 1/3 the price of smoking (or more, depending on the price of cigarettes in your State).

Oh my...I'm so sorry about both your husband & mother. I worked in both group homes, & programs for TBI people. I also did adult foster care w/ a man for 5 yrs. until his passing. My fiance' died in bed after 5 months of taking this man into our home. It was horrible. I've been working in Mental Health, in all kinds of positions since age 23....I'm 46 now.  The old ways of psychiatry were quite sad. I've seen & heard many horror stories, too. They've come a long way! Yes, my hubby has been in & out of hospitals/ programs since early 20's. His symptoms came on around age 17-20, but, the 80's were a bit better than your Mom's generation. Even I've lived through many positive steps in Mental Health. The meds. have come a long way, too. Still a long way to go. You've had it rough. You're a very strong person to have to deal w all this. Why didn't ins. cover the accident? That's so sad. My hubby's in his own place right now. I may move next door!

WOW! I'll save your note for him. Yes, I think the person who invented them should get highest honors! Such an awesome invention! I hope he tries them soon! I may just buy them for him! Don't have the $$$ since I'm paying 2 people's bills! He got a place cheap! These things are the way to go for sure!

Spokula; One more area where were out of syc or I didn't read your previous posts carefully. I asked if your hubby could live at home. I read that you've clearly said that he isn't and is in his own place. Know what you mean about his family not stepping up. Give yourself a big pat on the back for getting you living will set and in place.

My directives are not only a mess, they are simply non existant. I have to deal with this, like get my grown daughter added to one of my bank accounts so she could pay bills if I have a medical emergency. I'm going to use the money I'm not using on cigarettes,  for a small life insurance policy to handle burial expenses. It seems so rude to leave others with that final bill :-). I know there is so much more to do. I don't know who to name as the benficiary because my husbands brain injured and his family had him declared legally incompetent - although I am his Guardain as well as spouse. I'm considering starting a small Special needs trust. The Trust could receive the proceeds of the life insurance policy. At least this way if I die first, he'll have a little bit extra each month. The problem again is finding someone who will oversee a small Trust and who is "trust" - able.

I also have a planned cremation that is just about paid off. No one has to do anything but pick up the urn. They can do whatever they want w/ it. I'm going to pay the last 65 bucks this wk. Another bill gone! Cremation is cheap, too. My living will is all set. Yes, hard to trust people these days. When my fiance' died, I had no say at all. It was hard. When my hubby's incident happened in 06, we had to start thinking of what we would do in such a case. It was scary & sad. It was a miracle he woke up. This is another reason why I'm so upset, lately. I've been through enough! I don't want to deal w/ this crap! He should understand, but, doesn't really "get it". I think we came up w/ a "work-a-ble" solution. I'm starting to think his Mom's pretty useless. Even that night when he was near death.....I couldn't reach them. Alone as always. Whenever it's an emergency....they're no where to be found. Oh, but, Easter dinner....or, some family occasion.....they're all over it! UGH!

Spockula, you cannot change this, you really need to start thinking more about you. You are so consummed by your husband that you are going by the wayside. Please, please, please start thinking about what you can do to find yourself some me time. Little things can make a big difference, believe me, I have been there. Daisy

Spokula; yes, they were invented by a chinese gentlemen - sort of businessman/engineer type, after his father got lung cancer 2003. International patents 2004. They're quite sophisticated technology. I find I need a new atomizer and new battery every month. The mouth pieces are refillable - buy different flavored liquids in little bottles - but they get gunky after  5 or 7 days so i replace it. There is an e-cigarette forum on the web. Good for lots of information. I want to encourage you to do the e-cig think. Remember, ther eis a learning curve. Always have 3 batteries (one in use, one charging, and one in the wings when one stops working), and 2 atomizers and enough liquid so he doesn't run out and get tempted to smoke - like I did. Actually, smoking now is a last resort for me. I now hate the taste. I budget about $100 for e-cig supplies each month for my husband and me. Many people do it cheaper. That's buying mid range cost e-cigs - $50-$60 for the starter set. After a while you'll know which suppliers work the best for you.

Why no insurance coverage? Well, my husband ran a construction company. We carried millions of $ in insurance, but - it was only for commercial jobs,AND, the owner of a company isn't covered anyway. Second, the property could only be insured when construction had begun officially. Injury happened pre construction. The equipment we were using was not at fault, so no help there. Workers comp is only for employees. The good thing is, the injury happened just before the start of the new construction season. It had been 6 mos since we finished our last contract, so our resources were gone. Everything owned by us was at rock bottom, so he miraculously qualified for medicaid. Bills were well in excess of $1M so that's a miracle. However he was fast tracked for SSDI and he lost full medicaid 20 months before eligibility for Medicare. I couldn't believe our State does not have a Medicaid income Waiver for Brain Injuries. If I could not have cared for him, and kept our home afloat, he would have been forced into a nursing home and most of his SSDI check would have been taken by the State. The 3 1/2 mos he was in the Skilled Nursing facility I saw MANY sad cases - could be you or me - people who went into nursing care, had nobody out side able or willing to pay their rent/mortgage, their disability checks went to the home, and they lost everything. Plus they were trapped. With $30 or $60 kept each month for pocket money, they could never accumulate enough for a deposit on a small apt and get out. Let me know if your hubby tries the e-cigs.

Wow! You are so strong. What a tragic story. Can't believe he wasn't covered, still. HORRIBLE. Yes, I hope he tries these E-ciggs. He's thinking about it. Are they a hassle? Sort of sound it.

I know! I've, actually, gotten better the last yr. or so. I go do things alone w/ Family or friends. I can't believe I finally followed through w/ having him move out! I used to say it, but, never do it. I HAD to this time. He's doing okay other than quitting job/smoking/drinking! We're still close. Just needed our own space, & he needed to be more independent, & take the consequences for choices!

Did your husband die? Wow. That's hard. Were you the only one there for him? I, too, have a man w. Schizophrenia, emphysema, & many other health issues. He has family, but, I feel like I'm the only one he can actually count on! It's been proven! Yes, they're around....but, when it's a crisis, or he needs someone to "really care"....it's always me. I suffer from caregiver's burnout. Had to have him get his own place. Worry 24/7, & still only one who is there for him. It's a tough life. Glad we have this place to vent & relate!

Spokula; yes the e-cigs are a bit of a hassel. It's not like buying and using a toaster - not straight forwrad. The atomizers and batteries each have a limited life and have to be replaced. I order a new atomizer and new battery every month along with my liquid and fresh mouth pieces.

The batteries have to be charged. Use one charge one. It's a learning curve. But worth it.

Spokula; There was no workers comp because he didn't get injured on a job. Even if he did, the owners of businesses - even though they pay the insurance premiums can NEVER collect themselves if they get injured. Go figure. Just. like an emplyee can get unemplyment if the economy goes bad, but the owner of the business can not get unemployment. The owner just goes out of business with no safety net. Insane when you think about it. Fortunately my husband was employed years ago and built up SS.

Medicaid paid our Hospital/Medical bills Thank God the injury happened after 6 Winter mos of no work and no income. One mos later and we would have signed a new Contract and had a security deposit in the bank. We would have had more than the Medicaid allowable assets (even though the Security wasn't really ours). He received fast approval for his work based Disability but has had to wait 2 yrs and 5 mos until Medicare is available. Sept 1st yea! This is an outrgage in our "system". An adult who is Disabled as an adult has to wait 2 1/2 yrs without Medicare. If their medical is covered, it varies from State to State. Only half the States have Medicaid coverage for adults with brain injuries. During this period, many Disabled die because they are critically ill and can't afford the care. Remember there is a difference between adults who became disabled before they were 21 and those who became disabled after 21. Before 21 - the system can't do enough for you. After 21 - well you can die waiting for Medicare to kick in. It's a horrible disgrace. We have 1 mo and 3 weeks and I'm holding my breath. Also trying to figure out how we'll pay the Medicare copays etc. It's definately not free. Our State doesn't cover my husbands brain injury under their Medicaid. I don't know how we'll stretch our budget for the extra deductables and copays. I can do without, but my husband's life depends on his medical.

Yes, having trouble "selling" hubby in the idea. He's afraid he'd spend all this $$$ & not like them. I think it's worth it. Yes, does sort of seem like a hassle, & pain in butt to figure out! Yet, the health & $$$ benefits seem worth it to me. They seem to be a safe alternative to smoking, & can satisfy that whole "smoking" experience people like that other nicotine replacements don't quite cut! If he hasn't tried them by the holidays, I'll get it for him then! If he's not dead from smoking by then. UGH! Otherwise, things are okay. Yes, he's drinking too much. But, living apart is working out. We still see each other, & have our own space. I'm planning to take the place next door to him, odd couple, but, seems to be the best thing for us to do right now!

I think it's a shame that insurance/ etc. so hard to get. I mean, isn't this why we need such a thing? Hello! What's wrong w/ our system. someone who worked hard, & becomes injured "on job", yet, has trouble w/ coverage??? What do they expect? like he can learn a new skill, or suddenly get well? I see assholes on a daily basis who abuse the system & get free coverage for unnecessary ER visits, etc. They really need to start looking into our health care system. It's disgusting what I witness on a daily basis! Yet, the folks who actually NEED assistance are denied! WTF???

How grateful I am to have a job to come to, especially after weekends like the one just past.  An old friend visited for the weekend and, within a half hour of her arrival on Friday, my husband tore into verbally, telling me how mean I am to him, etc.  For some time now, when I get away for a mental health break, he punishes me for about a week when I get back.  Now it appears I am to be punished before I take a break as well.  I had the family over for dinner Friday evening so they could see our old friend.  My granddaughter and my friend were talking and he was watching TV.  He kept turning the volume up until it was impossible to talk.  I finally told him he was being very rude and to please turn the volume down.  Then, he went to his room and stayed there all evening.  Then, the rest of the weekend, he acted as though there's nothing wrong and I'm supposed to go along with that.  I am so hurt and I cannot turn it off that quickly.  I have made an appointment with my psychologist for Wednesday and e-mailed a good friend to have lunch tomorrow.  I'm just trying to maintain until I can get a handle on this new level of behavior.  We've had so many good years together and my heart is breaking.  This feels like a new level of dementia/behavior and I am so sad today.  On one level, I will always love him and make sure he is taken care of, but the emotional feeling is gone.  I am acting out of duty at this point.  I think I need to get away for a few days and put some distance between us.

Be glad you have a job to go to. I had to quit my job about one and a half years ago to take care of my husband whom has alzheimers. I have no help so I am with him 24/7. every now and then i get to go to the store without him but not very often. Some days he is very mean to me. He is at the stage where he doesn't use the restroom anymore and I have to change him. Some of those days he gets very mean with me and tries to hit me. The only break I get is when he finally goes to sleep at nite and I have my own time. I am moving back to fla from nc in Oct and I hope my kids will help with him so maybe I can get a parttime job if nothing else. He just gets so mean with everyone if he can not find me that is why I have not put him in day care or anything I am scared he will hit one of them. It is like I am just a caregiver not a wife anymore there is nothing there on his part. There is days he doesn't even know who I am. It breaks my heart because we always had good times together. I know one day I will have to let go and put him in a home but right now I just seem to let go. Good luck to everyone who is going through what I am. I pray for everyone.

I am so sorry for your trial.  It sounds like you should be giving strong consideration to placing your spouse in a facility.  I am trying to hold off as long as possible because I will lose his income at that point.  It seems a shame that finances are such a big part of the decision making process but the reality is that they are.  Take care of yourself.

I have thought alot about putting him in a home but you are right i would lose his disability and that is the only income we have right now. Its a shame that they take everything away from you. I am only 58 so I would have to find a job for sure before I could do anything like that. It is just hard for me to even think about putting him somewhere because then I feel like I am just doing it to get rid of him but I know deep down that is not the case. I have been taking care of him since 2005. His doctor told me sooner or later it will happen and I will not have a choice because it will get worse and if I ever get scared of him I need to call 911 because he could really hurt me.  I know the time will come and that will be the hardest decision I will ever have to face. That is why I have decided to move back to florida where my kids are.

May God bless you.