I feel like a rubber band,. John's still in hospital awaiting all the Medicaid mess to be straightened out so he can enter a nursing home....too far away for me to visit daily (his funds STILL haven't been released and my lawyer says tell the hospital to talk to HIM, for me NOT to sign anything). I DO visit him every day. He mostly sleeps and stares at a wall or the cieling. I cry when I talk to him, so we don't talk much. I always bring him a chocolate milk shake that he loves. He knows me. He tells me he loves me. Can't understand why he can't come home. I found that I couldn't take care of him adequately by myself and there are no finances to hire additional help. If he DID come home, Medicare would only pay for 60 days of in home care (visiting nurses, PT's, OT's, dietician, etc). He never wanted to cooperate with them and he doesn't at the hospital right now, either. He won't even accept a bath. I feel so sorry for him. On the way home last night, I could hardly see the road....I kept telling myself that I had abandoned him. God, I'm so alone. I keep myself very busy and just collapse at night, I'm so tired. No one can make a decision about what I'm doing is right or wrong, only me. The doctors agree that I can't do this (care for him at home) on my own.....but, still, if I wanted I could force my hand and bring him home. Some of you do it all alone and I don't know how. Life is upside down and I know I'm not alone in this boat. I've read worse stories. I know I've written about this before, you all, but this morning I'm particularly in need of just letting this out ...... just don't fuss at me for doing it. I was reassured that this is what it's for. I feel like a very bad person not being able to deal with this. I can't stay by his side all the time. I can't lift him off the floor if he falls. He screams if I try to pick him up. At the hospital, he can't stand to be touched. Damn alarms go off if I even lean my weight on the bed. He smells bad because they can't MAKE him let them bathe him. He is thinner and thinner. I keep trying to make other plans for things to do, but am guilt ridden for some reason, if I plan something to do other than go be with him. I ask him what he thinks about and he says "nothing". He tells me he wants to die, but doesn't know how. How sad. Guess I would, too. I want this to end. I want to think of other things than AD. I want my life back in some form or another. I need to visit my mother and father before I loose them. Don't get on my case about anything like in the past, please. Just venting. If you need to be negative, e-mail me instead of posting here. Thanks.
Stunt girl - it sounds as if it is time to place your husband, but as you say, that is a decision that only you can make. I placed my husband 6 weeks ago and it has been very difficult for me also. I feel guilt and I feel that I have abandoned him and I am having a difficult time planning to do anything that might interfere with my daily visit with him. BUT, I am working on that. I know that he is receiving excellent care and even though I still go every day, I am trying to get back into life with my children and grandchildren. I went to my granddaughter's 15th birthday party. That is something I could not do a month ago. My youngest grandson's birthday was the week after my husand was placed and I couldn't make myself go because it was too sad to go by myself. Little by little. One step at a time.
Jen, you will be able to be a better caregiver to him after he is placed. You will be more rested and can advocate for him. This must be a terribly difficult time for you and I have no experience with placement. My heart goes out to you as you have to go through this. It seems so trite - but just hang on!
Hey Jen, I'm right there with you. All the things you are going through in your own head are going through mine also. I want a life back, I don't want to abandon him, I can't do it alone anymore, I can't get him to bathe, shower, shave, not put rocks in his mouth and try to eat them, the list goes on. How can I do it, how can I not do it, the indecision and being responsible for the decision. I don't know how anyone else could judge not having to deal with it 24/7/365. Your husband is far worse than mine by a long shot and yet I'm having trouble taking care of him and myself. Do what you have to do and know that you have done the best you can. No one can ask more from you than what you can do.
Jen, I can't speak from experience about the feelings you're having, but I don't think you're abandoning him. I think you're doing what is best for him by putting his well-being ahead of your emotions. It must be so hard. I hope everyday that I never have to face what you are dealing with, but I know I probably will. Hang in there. I have complete confidence you'll make it through this and come out the other side stronger and happier than before!
Dear Jen, I wish you strength to make the right decisions, believe in them, and don't blame yourself for anything that has happened or does happen. We know you're doing what is right for John. (((Hugs)))
Stuntgirl, You are doing the RIGHT thing by putting him in a home, please don't feel guilty about it. You can still go see him and make sure that he is being taken care of. You have done all you can for him and have given him your all so give yourself a big old pat on the back for a job well done. Be proud of yourself that you hung in there with him this long and will still hang in there with him when he is in the home. Please quit worrying about what others may think.....they aren't in your shoes! No more guilt OK sweetie??!! I am here for you all you have to do is reach out to me and everyone on this board.
One cannot "PUT" someone in a nursing home. That decision is made by the doctors, therapists and the almighty INSURANCE COMPANIES. We the caregivers have little to no say.
Susan L, you may be right I don't know....never have been in a situation to know. If my hubby lives long enough and I can't take care of him, he will go into a nursing home, he has one picked out, paid his waiting list fee and is on the list. If I need a doctor's order, that will not be a problem. I was just trying to encourage stuntgirl not to feel guilty. This journey is hard on all of us and we sure don't need to beat ourselves up for the decisions we have made or will have to make in the future.
Stunt girl I noticed your lawyer said NOT to sign anything re: NH placement. I would have thought that by a spouse havaing POA and possibly living in a cummunity property state a spouse would be required to sigh something! Maybe Admn can comment on this also. Aren't we responsible somehow?
Dear Jen...I know you are going through a very difficult time...It is something thaat most of us will face sooner or later....You did your very best, for as long as you could...no one could ask for more..To--day was a bad day, DH. insisted on going Home...was going in and out of the house all day. would not take his meds, which made matters worse...finally I hid a xanax in his veg...I think it helped, because his mood changed for the better. A day like to-day makes me wonder how much longer can I keep him at home. I get very weary.... Just try to think positive, John is in a better place, he will soon get used to it, he is being taken care of...now you need to take care of YOU>...
Jen, though you have POA, listen to your lawyer. With all the legal mess, you don't want to cause anything to come back and bite you. You've had a rough road, and there is still more to come, but you are making significant progress. You can feel badly about the situation and about placing him, but it is best for him. As long as you do what you know in your head and heart to be the best you can for him, there is no guilt. There's just ALZ, and age and his other medial issues. None of those came from you or your actions. Just keep doing your best. It will be enough.
I know nothing about legal, lawyer stuff. I ask mine a lot of questions, write down the answers, and do what she says. We pay them to know the answers.
Thank you, everyone who responded, even on e-mail, too. I've never imagined being this alone and wondering what the future will be like. Waiting for the dust to settle. I think that today, I won't visit, or wait until my whole day is over. Yesterday, when I visited (I know, I said I wouldnl't) he was so thin that I didn't even recognize that he was actually IN THE BED. All I saw were some covers. I think too much about sickness, death, financial and family turmoil, and Alzhiemer's. Calling the lawyer first thing. I'll let you in on what's new, if anything.
My heart goes out to all of you! This is a decision I hope I never have to make. Those of you have had to make such a decision and then did it, have my complete admiration. What a terrible job to have to do. And someone has to do it. Who else but the devoted wife. Gosh, this is hard, isn't it.
Yes, there's still a 'glitch' in the system that is slowly turning....the nursing home is having the hospital and I reapply for John's admission. So painful. I try to visit him and he sounds so cognitive lately. Asks the same stuff all the time, but fairly cognitive on so many planes. He keeps asking me why I can't take him home, get him out of there. I keep trying to explain to him that I CAN NOT take care of him at home any longer. Impossible for me physically. I have no help, no family. It's sad because he asks why his girls can't come help me. Two only live two hours away. We're so fractured. A fractured fairy tale. Lonely, lonely. I want my life back. Whatever THAT is. I love you all. Thanks .
Stunt Girl, refer any of his family to his doctors ..and be sure he understands the situation. YOU ARE NOT PLACING JOHN in the nursing home, the DOCTORS ARE PLACING JOHN IN A NURSING HOME. What can they say about htat. If he was in a car wreck and had brain injuries, they would place him in a rehab facility...It would not be up for discussion.
Neither is this. Just let it go...and tell your daughter to tell them it's ok to call his doctor. Your daughter heard what the doctor said, isn't she repeating what she heard. On the other hand, if my husband was as sick as John is, I would expect his absentee children to show up - because with all that has been said and done, and in spite of their absence, they don't want their father to die. I know that to be true....deep inside my heart.
Thanks Nancy. With all that I know I still have, I feel so empty and over. I enjoy your friendship. I feel so uncertain, like a little kid again, without parenting, on my own. I just wish I had REAL youth to begin again with.
Maybe this could be a topic...but it's hard to realize one day that we are orphans, so to speak. My parents have passed away, my only sister passed away and I have only one uncle left,...and he is in very poor health. (He's the same age as my husband.)
So, Stunt Girl, many of us have to face being the only one left living(in our generation and that before us)...and it's the natural path of life. This is but one part of God's plan for us. We are born, we live, we age, and then we die. And then....those of us who have faith have an idea, but even we cannot know FOR SURE AND CERTAIN what will happen to us after death. That's where faith comes in... What we do is just hope that we can make this life the best we can with what we've got. Earlier you posted quite a few times that you missed going to church after John came home from Florida. Since you don't have to stay home with John now, maybe you should think about doing that tomorrow if it is what you were accustomed to doing "before". It works for me.
I hope I have not offended anyone with my post. It was intended for StuntGirl... based on her previous posts... Please forgive me if I was out of line.
I think Stunt girl is my age (mid 50s). One of the frustrating things is being out of the usual age pattern. My mother is still alive and in better shape than my husband, as are most of the relatives of her generation. I do find church helpful myself, but my Episcopal church is full of people a generation older than me who are healthy, some of them still with both partners in a marriage healthy. We go also to a UCC new church startup which is at least full of young people.
Today is the day, if no one read my other post. He's leaving for the nursing home. Too far for me to see what goes on every day. I'm speachless and sobbing. Gotta get it together before I get to the hospital with all his things.
I don't get online enough now to follow, but Jen, I'm going to be hoping it goes better than you expect and that the helpers at the NH actually HELP make things better for you and for him.. The deal of feeling like you are abandoning..is familiar to me too. I sometimes think I've got to get away from this.. and then I think I can't bear to leave him in the care of anyone else.. But thats where professional help has got to come in to close that gap and give us the feeling that what we're doing is the 'right thing'.. At least thats what I'm hoping will happen when our times arrives.. So I'm thinking of you today and hoping you keep that thought. Good luck