I visited Bob tonight and brought him cheesburgers and french fries, visit was going good until I had to leave, well he did call me daughter but that`s ok, when I wanted to go he grabed unto me and got very mad and weepy and said he wants to go home, can`t take this anymore, I said I will see you later and he said don`t count on it, big guilt trip on me again, it was alot easier to leave when he wasn`t so alert a month ago, I love to sit and talk to him when he is calm but this part of him I don`t like, had to find his nurse to calm him down hope he did, I had to just walk out. Gail
marygail, you just asked my question. I was just wondering what I wanted to name it. I visited Charlie tonight too and he actually held my hand for a while but in my case for the most part I get no reaction from him. No joy, no sadness, nothing. We went from 0 to 60 in under 2 years. He is getting wonderful care and I know that I don't have to go every day, but I can't stay away. I work 8 hours a day with 1 hour driving time each way and then I hurry home to go spend time with him. Then home and to bed (most of the time with no dinner) and up in the morning to do it all over again. I am exhausted frustrated and angry. I thought placing him would make our lives easier but that has not been the case. So you asked the $64,000 question and I don't have the answer. Does anyone else?
Christine, Marygail, I haven't been there yet so I can't tell you. But, Christine, perhaps you could make the time that you spend with Charlie better for you both if you did go just every other day. I know it's hard and I haven't been there so I know I have no right to advise you -- but why not decide that it's necessary for your own health and at least give it a try?
I've found this a day-by-day decision. I make myself not go on the weekends, both so that his children can visit him at any time and for as long as they want, but also so that I have that break. It is natural to feel badly that we can't do everything, or fix everything for them. My daughter said something to me that I find helpful. (Apparently my husband does the same thing to her.) She says, "He seems to need to say it, so I let him, and then he feels better. I have a couple of things I say to him that get him back on track , and it's fine after that."
I find when I go to leave, it's better if I say "I'm going down the hall. I'll be back". He accepts this and I can go easier. I find caregiving once they are placed is more difficult for other reasons. You are no longer in control. Even though you have POA, there are others making decisions for them and you are uncertain as to whether this is right or wrong. They are in a new phase and you are in unchartered territory. The drs at the nh are new, they don't know you or dh. They are there when you are not and their schedule may not allow you to interact face to face. It is frustrating. I am grateful that the physical part of caring is over (for the most part), the emotional one goes on and on. The disconnect continues. As time goes on, once you see that he is well taken care of, give yourself a break. In the meantime, try to take dinner with you to eat. Pack a salad (don't forget the protein) and eat it while you visit. At least you will get nourishment. Not eating well will wear you down really fast. And stay hydrated-drink water. Good luck
I can't explain the phenomenon that made Lynn able to remember who I was once he was placed. Not only does he know my name, but he also knows I am his wife. He is now loving and sweet. I can only assume the trauma of being placed was significant enough that it triggered this change.
I am eternally grateful to have this part of "My Lynn" back!! But Lord, does it ever make having him in a NH that much harder! I KNOW he needs to be there. I know he is safe and well cared for. I know in the deepest part of my heart he deserves better care than I was able to provide alone. BUT, it is so much harder emotionally now that he isn't home. I want him home!!
Lynn still believes I sleep upstairs in the NH. When he asks to go home, I tell him WE are home. If I make it clear I am always there, he settles down. I set my cell phone alarm for when it is time to go. When it goes off I tell him it is my doctor and he needs to see me upstairs. Most days this works and I am able to leave without him being too upset. Me? Every time I leave him, my heart breaks anew..... :(
"will it every get easier"? God I sure hope so! Big hugs of understanding, Nikki
I have found a couple of lines that work very well for me when it comes to leaving him. The first is I have to go let the dogs out before they pee on the rug. The second one is that I have to get back to work. I then tell him I love him and will see him in a bit, give him a kiss and leave. This has worked very well for me. Sometimes he will grab my hand and not want to let go. Usually if I treat this calmly, I can get him to let go and still say I will see him in a bit.
Depending on their sense of time and how they are, you probably don't need to see them every day - take a day off during the week and one day off on the weekend if you need to. You will be much better for it and your visits will be better. We need to do what we have to to stay healthy (mentally and physically) so we can be there for them when they need us.
Bob didn`t know who I was last month but he knows now, at time he gets me confused with a daughter at least I must look younger to him, lol, now I know I am not the only one who has a hard time leaving and him wanting me to stay or take him home, I thought it would be easier to leave him there but when he crys I just want to cry to, deep down I know it is best for him but when he says "I can`t take this anymore' what do you do? I see him three times a week and that is hard to do, he now thinks he is 49 yrs old so I guess he is back in time and thinks he is fine and can do what he did then, how do you handle that? He always says he wants to go home to Dollar Bay, that is where we live, he couldn`t remember where we lived before. at least he is not a toddler yet. Gail
To quote Nikki - "every time I leave him my heart breaks anew" How very very true. I am beginning to believe that the emotional strain of having him placed is worse than the physical strain of trying to care for him at home. I would bring him home in a heart beat if I could but I know that I can not keep him safe. How long can we survive having our hearts break each time we leave?
I hope it gets easier, I cry everytime I leave the hospital, even after a great outing to friends like we had today. It was the most normal day we have had in a very long time. I have to sit in my car and pull myself together or call a friend before I can start the hour long drive home. I hope it gets easier.
well guess what, it didn`t get any easier leaving him, he just crys and gets mad, told him I was going to the rest room, didn`t work, he said he doesn`t love me anymore, heart breaker, asked me to stay there with him and live there, gee didn`t he just tell me he doesn`t love me, I told him I love him and think of him all day everyday but he wasn`t buying that either, sometimes I wish he didn`t know who I was anymore, maybe it would then be easier. feeling like crap right now and want to put my head under the covers and stay there. Gail
marygail - I know exactly how you feel. My husband can't speak with his voice but his eyes say more than I can bear sometimes. I too sometimes think that it will be better when he does not know or care if I am there. Got any room under them covers? Maybe I could just crawl in with you.
Ehamilton...."I am beginning to believe that the emotional strain of having him placed is worse than the physical strain of trying to care for him at home."
For me, without question, the emotional strain is worse than the physical stress I had when he was home. I have seriously considered bringing him home. Honestly, there are days when it is ALL I CAN DO, to not pick him up and run like hell for the closest exit!
My mom told me I am being selfish. At first that hurt me a bit. But, she is right. I don't want him home FOR HIM... he NEEDS to be there. He needs the 24/7 care, and the nursing skills they can provide. I want him home for me, I miss him so much I physically ache. I have to tell myself every day, I have to love him enough to want what is best for him. I do love him that much, but Lord does it hurt.
Maybe you could get a bigger cover? I want in too!
I go through a list of what ifs and maybes at least once a week, trying to think of how I could bring him home and make it work. If I happen to speak out loud and any of my children are within hearing distance I get a "don't you DARE try to bring him home". And after I exhaust my list, I know that there is no way that I can bring him home, keep him safe and stay sane. But oh, how I wish I could.
my cover is big enough for all, I ask myself all the time should I go and get him and ask my kids what do you think, a straight out NO WAY, you will kill yourself and that won`t help him. so come under the covers and we will figure this out together. Gail
I know he is getting better care and more activities where he is than I can give him at home. This helps a lot. He has more space to move the chair around and gets much more social interaction with a variety of people. These are all good things. Bringing him home would be for me and not what is best for him.
The real question is how are they when we aren't there? Do they participate in things that they can still do? Do they interact with others? The nurses and aids are terrific about telling me some of the things that my husband does when I am not there and as I have seen him do the same things when I am there, I am fairly confident that what they tell me is true.
Sometimes as I read some of these, I am reminded of the 3 & 4 year olds I used to teach in Sunday School. Some of them would kick up such a fuss when their parents were leaving giving them a huge guilt trip. Two minutes after the parents were gone, they were smiling, laughing and playing with others. Children are great manipulators, are our loved ones doing some of that stuff as they progress in the disease? People with this disease are emotional barameters - how much are they picking up from us?
John is still in the hospital and waiting for nursing home placement. I , too , thought things would be easier when he got placed out of my apparently inadequate care....what a feeling of failing and despair. I STILL can't get going during the day, have a hard time planning around my visits. I also think that I visit too frequently, for too long. Whenever I entertain the idea that I should just "man up" and force his return home ( I know it's not in his best interest), I play a tape recording I made (on the advise of a doctor) of an incident preceeding his recent hospitalization. Just about trying to get him up and out of the bed to bathe and eat. AAAARRRGH. All his cursing, screaming, accusations, bullying! I get about five minutes of that and it's like an inocculation. I'm ready for all this to be over, at least the next few weeks. I wish his children would step up and try to help.......I've lost contact with them all, they still haven't called to see how 'daddy' is, and frankly I am scared to death of them anyway, with all they've put me through. I'm pretty numb right now. Sometimes, I feel a glimmer of hope. I have been entertaining the idea of going back to school if I could find some grant money.....at least I'd meet some people that are real and face to face. I know that would be good for me.....and I'd have something I could use for my future. I'm still young and refuse to be knocked down and made very old by this thing.
Scoot over girls, I want in under the cover. The good thing (if there is anything good) about this is that he thinks he is home and I am gone, so I don't get the begging to leave there. They tell me he searches and asks for me all the time, but he doesn't recognize me when he sees me and he is not overjoyed to see me when I tell him who I am. I get treated just like the help. He even asks me where his wife is . I wonder also how many times our hearts can break.