I know it's been a while since I wrote, but there hasn't been much to share. Mike's been doing 'okay', but just okay. He is (barely)maintaining. We did get a dental device for him, but he has been unable to get used to using it, and consequently, no progress has been made in getting him off the CPAP.

He's gotten into a pattern lately of sleeping inappropriately. He's usually asleep when I get home from work, and frequently doesn't get up for dinner, or he gets up for dinner and falls right back to sleep on the couch after dinner. I'm out of the house a lot of evenings because my daughter is learning to drive and I am out with her. He is invariably asleep when I return. I try to get him to go to bed, but he is unpleasant and uncooperative, so I have taken the tack the neurologist suggested of letting him live with the consequences of his choices, rather than put myself in the position of getting my feelings hurt or finding myself in a fight. This works on one level, but last night brought home a point that I had just not let myself think about: it is dangerous. When he sleeps poorly, as I've mentioned before, his condition suffers, and his tremors are worse. His balance gets worse, too. All of this adds up to him being more prone to accidents, and last night he had a very bad fall in the middle of the night. He hit his head falling in the bathroom, and this morning he looks like a prize-fighter with the swelling and blood everywhere. I was sleeping on the couch and heard the horrific crash at around 1:00. My daughter, a very sensitive 16-year-old, heard it, too, and was terrified. As I ran down the hall to find him covered in blood, my daughter was calling her boyfriend, who was spending the night with a friend down the street. When I went to the kitchen to get cloths to clean him up, my daughter was slipping out the front door to get a hug from the boyfriend because, basically, she was traumatized. I was traumatized, too, but too busy to think about it. While I cleaned him up, I was wondering if she was ever going to come home or if she was gone for the night (not that she has ever done anything like that, but she has been having a rough time with life in general lately, and I was afraid she had finally snapped). Mike was typically stoic, asked for some tylenol and went back to bed with these huge gashes on both brows, sore knees, sore arms and hands. My daughter went upstairs, and I lay on the couch wondering what on earth I am going to do.

I haven't been really happy with the situation for quite some time, to be honest. There is almost no relationship left because when I am home, he simply isn't here. He is asleep or groggy, and is no company at all. I spend my time alone. To be frank, our sex life is as close to non-existent as it is possible to get without it being completely non-existent. I can't challenge his behavior because he gets belligerant, and I can't bring up our relationship problems because we just end up with him not speaking to me for days on end. I know I am not dealing with the most rational person to begin with... I am caught in a terrible position and I don't know what to do. Part of me wants to end this relationship so I can get on with my own life and keep my daughter's life somewhat within normal limits. That's a thought that has gone through my mind far too many times in the past few months. I am torn because of so many things:

I can't tell if keeping him here really is the best thing for him any more because he is not doing his part to promote his own well-being. He has become lazy and careless about doing what he needs to do to take care of himself. Consequently, he is a danger to himself, clearly.

I am his only hope of a somewhat normal life, and he has a lot of productive time during the day if he goes out to the garage and keeps himself busy instead of coming into the house and falling asleep on the couch. He would be a lost life if he were in a home somewhere without access to a workshop. He actually does do alright with power tools and knows not to use them if he is too shaky. That is how he usually spends his daytimes, and then he gets tired and is asleep by the time I get home.

His now-11-year-old daughter would be totally traumatized if I give up on her father the way her mother did.

I can't tell how much of my own agenda is playing into my thoughts about him these days. I am tired of spending virtually all of my time alone. I want to go out sometimes, or, really, date, because I feel I no longer have a boyfriend. I know it's selfish, but I am not getting any younger and spent most of my life in an intolerable marriage. I don't want to spend the balance of my life unhappy. I don't see this working out long-term the way it's been going, but part of me has always hoped it would eventually work out if we could get his health issues stabilized. I'm not so sure of that any more. And, realistically, I have to look at things the way they *are*, not the way I hope they will be. The way they *are* is definitely not what I want.

But that leaves me with the horrible feeling that I would be totally ruining his life, taking away what possibility there is of any quality of life at all, for my own selfish reasons. I can't figure out how I would live with myself if I did that.

So then there is the question of whether letting him stay is actually in his best interest if he is going to essentially cause harm to himself by not doing what he needs to do to maintain what health and ability he does have. The thought kept going through my head last night that he needs to be somewhere where there is a staff to watch him and help him. I absolutely can not stay up all night or spend my nights making sure he doesn't get hurt and taking him to the bathroom. I also can't control what he does when I am not home, and lately that has consisted of this sleeping without CPAP. In a home, at least they could watch out for him. But would I do that just to further my own agenda? Or is it a realistic concern? Most of the time he is fine, but then he has these accidents... Because of his disabilities, he has destroyed my bed and my sofa. He has put various body parts through the sheetrock in the hall and the bathroom. Many, many possessions of mine have been destroyed because of the way he lurches from wall to wall walking. Aside from the projects he has done on the property, he has no claim to this place - he has basically been a boarder.

His presence here has caused rifts between my two daughters and myself. Neither of them really likes him, although the younger one has gotten used to him being around. The older one is away at college, but when she is home, she makes it clear she can't stand him. This was a huge issue over the Holidays.

It's just a very confusing situation and I need some guidance. Part of what keeps me from leaping to a decision is that I do really like him most of the time, and I do enjoy his company when he is awake, lucid, and non-confrontational. Life, however, is hell when he isn't. Lastly, he contributes financially, by paying a basic board that I calculated to be pretty precisely what it costs me to have another person living here. It's been three years now, though,and I honestly don't know if I would make it or not without this contribution now.

If I felt it really were in *his* best interests to put him in a home, I would just get another job to make up for it, though, because I wouldn't feel so compelled to be home as much.

I am very conflicted, obviously, and I need any input you care to share. I've been as brutally honest and frank as can be, and maybe that paints me to be some kind of monster, but I guess that is why these anonymous discussion boards are so good - you can tell me your thoughts and I can take them a little more objectively. I really have no one to talk to that doesn't have their own agenda for me, so I need outside thoughts. (At one point, I had to tell my boss that I would be missing some time from work, which he was perfectly okay with, because both my daughter and Mike had appointments that I needed to take them to. It was at a time when Mike wasn't speaking to me, too, but I planned on taking him to Dallas nonetheless. My boss said to me, at that point, that maybe it was time for me to take a good long look at my life... But again, I don't know if that was because he has his own agenda for me. You know?)

So what do you think? Is there some clear indication of what would be the *right* thing to do here? I am just torn and confused right now.

I don't mean to be simplistic and you may have answered this before in other posts, but what about antidepressants? Are they an option? Might they help?

How are you doing with holding your ground on his moving out? Remember to hold out your hand here for support in your decisions

Cathy

Lynne, he has none of the above. The concensus of three top neurologists is that he appears to have hypoxic brain damage. Most agree that he probably has/had something else going on, such as exposure to toxins or an underlying epileptic condition that aggravated his brain when he wasn't breathing because he has severe obstrructive sleep apnea. Chronic hypoxia can do terrible things to the brain, but I guess when you compound that with another risk factor, you end up like Mike. I wouldn't be at all surprised if there is some psychological component as well - actually there is if you consider that his tremors become almost completely unmanageable when he is upset. The sedatives are supposed to control the tremors, but we have learned over this time that the very best thing that can be done for the tremors is for him to get good sleep. It helps his balance a bit, too.

Does he have AD,picks or parkinson's,What?If that's the case there's not much you can do.
It will get much worse...........

Nancy, I think boundary-setting has always been an isue with me, as well. During my horrible marriage I was in counseling for years trying to cope with being married to a lunatic (a clear narcisist) and finally admitting that, after twenty years, I would never have a relationship with someone who could only have a relationship with himself. I know that in all that counseling I learned a lot about boundary-setting with 'healthy' people, but the situation with Mike seemed outside the bounds of what I was taught about. It seemed extra-ordinary. Also, at the time he became sick, I had only known him for about five months, and had fallen in love with him, so I was not willing to let him go so soon. I wanted to help him get well so we could resume what had begun as a truly awesome relationship. Ah, well... It's not to be.

Apparently, whoever wrote "Fault Lines" must have lived through a situation like this. <smirk> I know I've considered affairs more seriously than I ever thought I was capable of, and I was shocked at my own thoughts.

Having a child is a foremost consideration because they really have no choices in these situations, and it is up to us, as their parents, to determine what is best for them. On some level, showing them what compassionate caregiving is can be a good learning experience for them, but in my situation, it's been traumatic and unhealthy. And it's not hard to understand how a child would feel as if they come second to a needy invalid, too. That doesn't engender good feelings at all.

Your post is so thoughtful and wise, and I appreciate it so much. I know we all do struggle with these things, and I pray for strength for you to follow what you know is really right for you.

Lynne, unfortunately, no other med exists that could help. The nes they've attempted to use are all sedatives to quell the tremors, and that just makes him sleep more, as well as making him groggier, even less lucid, and a whole lot more dangerous. The top neurologist in Dallas threw up his hands last month and told us there is nothing left that he can do for Mike because he can't tolerate these drugs. They buuild up in his system, even at the lowest doses.

Dear Accidental Caregiver,
I am glad you have come to some decisions. I think making the decision is the hardest part. Once that is made, then go forward in peace.

We all know, for those of us who take care of our loved ones in the home, that there may come a time when we can no longer do it - emotionally, physically, financially, or otherwise. May God grant us ALL A SOBER RECOGNITION OF OUR OWN LIMITATIONS, and the limitations of those other people in our household that we also have responsibilites toward.

I think being absolutely HONEST about ourselves and our situations is essential. I ADMIRE you for being so honest with yourself, and the rest of us on this message board. You are not a shluck for thinking or feeling any of these things. Thoughts and feelings are JUST THAT - and often provide valuable clues as to what we need to do in any given situation. Acting improperly on our thoughts may be wrong - but you seriously need to "listen" to your "inner voice."

I think many of us caregivers do NOT. We think we are "being selfish," when its really a failure to set proper boundaries and to acknowledge that WE are valuable people, too, with feelings, and desires and needs. We stuff our feelings, chastise ourselves.

I would dare say that NONE of us on this message board are selfish people. We give sacrificially MUCH of the time. When an inner voice says, "What about me?" we condemn ourselves and tell ourselves that we are selfish. At that point, it is easy to do stupid things, rather than lay out a carefully laid out plan for ourselves and our loved ones.

I've mentioned in other posts about the book, "Fault Lines." About a middle aged woman being torn to bits by caring for her mother in law with alzheimers. Her teenage daughter becomes anorexic, with the pressures of the crazy grandma at home. The woman runs away from home, has an affair, because she couldn't honestly deal with the caregiving situation and set limits. I know its just fiction, but its been a powerful reminder to me to know my limits, set proper boundaries. To look out for MY 14 year old daughter, too.

I am not a good boundary setter. I am struggling personally to do everything I have just said. It is SO hard.

God bless you, accidental caregiver. I think we'll all be thinking of you and praying for you.

Nancy

May, bless your heart. You *need* the break. Please take one. Always remember that you are far better able to take care of others only after you have taken care of yourself. Many months ago, when Mike would have his weekend with his daughter, the two of them would stay with Mike's mom, and I would have a weekend off, during which I could actually sleep in my own bed, uninterrupted for eight whole hours! It refreshed me and gave me a second wind that was sorely needed. (Unfortunately, that stopped, and since then I have hosted the child along with taking care of her father.)

As far as self sacrifice goes, as long as we give, someone will always be there to take. That's human nature. And we hope they give back, but in this kind of situation, they aren't really able to, and it drains our souls. We need to refresh our souls and ourselves because no one else is going to do that for us.

Yes, ultimately, the disease wins. It is stronger than any other force.

Gypsy, You're absolutely right that it isn't a healthy situation, and it hasn't been for a long time.

He didn't end up leaving last night - apparently his mother wouldn't come get him or something. He left in his own vehicle, but returned. I had no idea what was going on because I heard the garage door open, a car door, vehicles running and moving in the driveway... But in the end, he was back in the bed for the night. He seems to have gotten some sleep, and this morning is lucid and asking for "some time" to get moved out. This isn't the first time I have asked him to leaave, unfortunately, and I have backed down in the past. I'm sure he intends to try to talk me out of it again. I was so hoping last night was the end of it... <sigh>

It's past time,you need to talk to his Dr.Maybe a new medication is in order for him.Either that or place him............

Accidental caregiver, If I were able, I would shake your hand.You were able to make the decision that I am facing at this time.I respond to you because I relate to all you are feeling and sharing.I have had those panic attacks and they are frightening and can be painfull.We are given so many difficult decisions to make.I HAVE LEARNED THERE ARE TIMES WHEN I FAIL TO USE COMMON SENSE.I had promised my aunt I would never allow her to be placed in a facilty as was my mother.But I was not aware the days ahead would become more than one person could handle.I have the chance to place her , under hospice, for a weeks respite.I have wanted it so badly but something always held me back.I plan on talking with her social worker and getting all the information , tomorrow.The place is 5 minutes away so that will be good.I think my worst fear is once she is away, I will become so compfortable with just one that having her again will prove to be more stress.I feel good as she will have the volunteers she now has and also the same aide.If I were not experiencing so many down times I would not consider such.I also think of the self sacrifices my mother made and it never served her well.I also believe it will serve my husband well as I will be able to take him out with out having to rush.I have excellent services which I could not have come this far with out them.I know I will have some family members who will question my decision , but they are not wearing my shoes and really do not give me the support needed.If I did not have this most wonderful aide and this great agency, no one would be home.So you see, you are not alone in what you are feeling.You have given it your best.Many times the best makes no difference as the illness is stronger than us.We win some battles but never win the war.The disease is the one who conquers us all in ,some way.When I read your post, It was me speaking.It is so easy to give another advise that you know is good for them and your self.Yhe saying" Practice what you preach"I do believe 2 of my most wonderful friends have made that point to me.To be indecisive does not serve me , you, or anyone well.Think positive and allow no one to put a guilt trip on you.I do hope you will keep us informed

Accidental Caregiver-I am so glad you have let yourself make a decision. I am also glad that Mike has family that can take responsibility for him. I hope you and your daughters can get your lives back on track. This obviously was getting to where it wasn't a healthy situation for any of you. You voiced a concern about his daughter-here's hoping her grandmother makes sure she still has contact. Give your daughter an extra hug tonight this has obviously been a stressful time for her. I hope she will be able to sleep better. Please keep in touch and let us know how things are going for you as this is bound to have an emotional affect on you.Don't ever second guess your decision. You are doing what you know in your heart is best for ALL of you. Gypsy

May, I swear you are an angel sent to me tonight. I struggled all day with all of this. What finally tipped the decision is the fact that my younger daughter awoke this morning to tell me she was having another in a series of panic attacks that basically started Saturday night after his fall (she ahs a recent history of them). I realize that even if I wanted him to stay, I can't let him. I can not continue to subject my daughter to what goes on around here. For that matter I can't subject myself. Mike has misinterpretecd many things that have happened and things I've said since the incident Saturday night - today he hung up on me while we were talking because he misunderstood me. I realize that his mind is so far gone I am never going to reach him. All in all, though, I just can't cope any more, and tonight I told him that. As I write, I am waiting for his mother to come pick him up. I have no idea what will ultimately become of him, but it's up to them now. I am already feeling more relaxed and he isn't even out of the house yet. I know that his health problems have affected his mind,and I feel badly that I can't continue to help him and be patient, but other priorities exist and I have duties to take care of. Protecting my daughter comes first, and protecting myself comes next. Unfortunately, as much as I've loved him and tried to help him, I've been in over my head for a long time, and it's just hard to admit that, especially when there has been progress. It's just never going to work out and I know that.

accidental caregiver, Your honesty does not paint you as a monster.It paints you as someone who is having a conflict with her own personal needs and her heart.I am sure there are many who have experienced these same feelings.I think you know what you want to do.No should to be used or it becomes less of a choice and more of a must.No one here passes judgement on another for any reason.That is not our purpose for coming together.You do what you feel you truly want to do.This is your decision and stop looking for reason not to do something.This is your life and it only happens once.It is a difficult pllace you are at , do what you want to do and never look back and never allow guilt to enter your mind