My Charlie will be entering a nursing facility tomorrow morning at 11:00. This has been the hardest decision that I have had or ever will have to make. The pain is nearly unbearable. He is sleeping now after spending his evening pacing himself into exhaustion as he does every evening and I am putting off going to bed, knowing this will be the last night we spend together in our bed. I want so badly to lay awake all night and just hold him but I know that tomorrow is going to take all the strength that I have and I need to rest so I will go in in a while and take something to help me sleep and hold on to him for dear life while I wait for it to take effect. I know that my heart will break when I leave him there, I will hurt, I will be sad, I will be lonely in the days and years ahead, but I also know that I have no choice at this time and that I will survive. It shouldn't hurt so bad to survive.
My heart aches for you tonight. I pray that you and he will have a calm and peaceful night and you can hold him all night. May tomorrow bring you strength. I will be thinking of you.
Edis, my thoughts and prayers are with you during this most difficult time. My heart aches for you. Stay strong, and remember we are all here for you. Get some rest.
Oh, I am so sorry, ehamilton. I am feeling your anguish and am praying for your peacefulness tonight. I am reaching out to you in spirit. This is something I dread but know will come to me, also. A nightmare for me as I feel it is for you. So, so hard to survive on our own...M
Edis, you are very strong and courageous and put up the good fight to the end dear lady. its best for your Charlie at this point to be taken care of around the clock by professionals; you will see him everyday and now can dedicate your time to loving and enjoying the time with him instead of wearing yourself out caring for him at home. its the right choice, but that does not spare us the pain and suffering that goes along with this decision. my heart also breaks to read your sadness but know we are here for you. divvi
Sharing Charlie with a group of people who will insure his safety and comfort is one of the most loving things you could do for him at this stage of his journey. I'll be thinking about you both in the morning. Sleep well. NancyB
ehamilton, I am not where you are in this battle, but I think what you said in this quote is the best description of the worst part of this disease, at any stage.
ehamilton, yes it is going to hurt to leave him but you must know it is for him to get all the best care he can get, my dh paced himself to exhaustion too all night and day and it got to the point I could not handle it . I will be thinking of you tomorrow as you do the courage task of placing him, I hope you have someone going with you so you can have someone to lean on, sleep well tonight. Gail
Edis-my first night home alone was the loneliest in my life. I didn't want to survive. But survive we must. We will always be caregivers and will remain responsible for our loved ones. My heart goes out to you tonight.
My tears flow and my heart hurts for you. I will be thinking of you tonight and tomorrow as you do this most difficult and courageous act for the one you love.
Edis..my heart is yours. That is probably the most difficult thing to do, and you will be lonely, but you have us and the rope to hold on to. What you are doing is being the true caregiver, which means giving despite the hurt and sorrow it brings..True love is the gift of oneself to another.....sleep well and you will be in my prayers.
edis, I hope you are able to gather strength from all the heartfelt messages from your cyber family. May you also be strengthened by knowing you are doing the right thing for your dear Charlie. {{{{{{{hugs}}}}}}}
Edis, This has to be so hard! I'm not there yet, but I truly hurt for you. I pray that you will find strength and comfort through all that must be done.
This must be so difficult. I am so sorry. But you will make it through this, as you have made it through all the heartbreak that you have already faced and that which is yet to come. Please let us know how it goes tomorrow.
Dear Edis: I have been in your place--the hardest thing I've ever done was placing my DH. I know how you feel, how you want to hold on, but you will be able to hold him in the facility, to feel his breathing, take in his smell. There were times when I even laid beside him on his bed, I didn't care what anyone thought. So you will continue to love, that's doesn't diminish. Like so many others, I'll be with you, don't feel alone. Bettyhere.
Dear Edis, My heart aches for you. The next few weeks will be difficult but I know you will come out even stronger. There comes a point when keeping our LO at home just can't work anymore. I took the step you are now taking 8 weeks ago. Tough for sure but things improved quickly. I look forward to seeing him everyday. I feel refreshed and relaxed when I used to feel so tense about what each day at home would bring.None of this probably means much to you right now. Please post often and let all of us know how things are going for you.Your in my thoughts. cs
Edis, oh sweetie, just hang on to us today. You will still be able to climb into his bed at the NH and hold him, as I have done with Jim at the hospital. Remember, you are doing what is best for BOTH of you. I know this doesn't make it easier, but know that this way you can continue to be a part of a Caregiving TEAM. You won't be alone, you won't be worn out. You can go each day and be rested and upbeat. This is what he would want. Take care, rest and hold on, we are here for you. Arms Around, Susan
Edis, hang on, this is a difficult decision to make, I placed my wife 6 weeks ago, yes I am lonely and miss her greatly. I know now she is getting better care than I am capable of giving her, it took her a few weeks to adapt but she seems to be fairly happy now. I hung on for as long as I could, It was extremely tough on us, but we could no longer keep her safe at home or care for her 24/7. We know now that we made the right decision.
Hang in there you will get through the next two weeks, get some much needed rest and spend some time doing what you want to do and get yourself back out there in the world.
Thank you so much for all the kind words. I did sleep well after a while. The admission process went fairly smoothly and I handled it fairly well (with the help of a double dose of Xanax). My stepson and am my sister went with me. Charlie roamed for a while, taking in everything and I had to go the the office for the paperwork. I think that might have been a mistake to leave him so quickly (even though I didn't leave the building, I don't think he knew that). By the time I went back to his room, he was angry with me). But he did eat a huge lunch. They brought him beans, corn bread, cooked cabbage, stewed apples coffee and juice. He ate it all and was looking for more. They brought him a dish of peaches and a piece of pie, he ate all that too. He paced a little more, pushing me away from him every time I got near. Finally he lay on the bed and I kissed him goodby and told him I would see him later this evening or in the morning. I think that him being angry with me made it easier to leave. If he had been clingy or acting like he didn't want me to leave, it would have been harder. Glad to hear from those of you who have placed loved ones who made a good adjustment. That is my greatest fear, that he will not adjust and will be miserable the rest of his life. I don't think I could stand that. I dread climbing into that big empty bed tonight but I suppose I will adjust after a while also. Thanks again.
You did a great job! Take care of yourself tonight. Take a long bath, have a glass of wine, etc. whatever helps you relax. I know it will be difficult for you but remember you need your rest too.
Oh, edis, it doesn't sound like it was as bad as you feared it would be! The pacing is one behavior I don't think I could stand either. Deb's got good advice - wine, hot bath.. hmm .. I could use that too!!
Edis you see? all that last nite and it didnt go near as bad as you thought! he is eating heartily and will adjust soon enough. you need to 'chill out' and just do nothing the rest of the day and get a very good nites sleep. and maybe that xanax is wearing off and another dose may be in order before beddy bye:) i am thrilled you got it over and its going to be such a big relief not to have this caregiving so up in your face all the time! divvi
Edis , so glad things went well for you, now try to relax, i know that is hard to do but it will pass and get a little better for you, you will be lonely and sad, that is normal when we place we all go through that.
edis, good on you. You carried through bravely and got the job done. With prayers, luck, more rope you'll be able to relax some when you're with your DH rather than worrying about putting out the next fire. Thank you for letting us know.
Edis, I've been thinking of you today. I'm so glad it went as well as it could have. I admire you're strength, as well as all of you who have had to place your loved ones. When my time comes to make that decision, I know I can take inspiration from you, Edis, and all of you. Good night, and God Bless
Edis, your story gives me hope and strength, Jim is asking to be placed. His assesment is today. I'm scared, lonely, anxious and worried, you name it, YOU know it. I hope they can give me the help I need to keep him home, but with our home set up, it's getting dangerous, and with the housing market and his prognosis being so short, it would not make sense for me to try to move. Oh Lord, why does this have to be so hard. But then I stop and think of Mary.......I'll take FTD over losing a child anyday. I cannot imagine the horror of losing a child. This is bad enough. What a mess this life is.
Edis, So glad you got through that first day ok. Everyone feels great when they can survive this terrible moment. Don't expect miracles. WHen you go to visit he may be fine or angry or begging you to take him home. Stay firm. Have they advised you to stay away for a while so he can acclamate? Some people find this better. I had a definite need to see he was being treated well. Mu dh is further along. Not really verbal. I guess that makes it easier. For the first few days, you will hold up but expect to have some moments and go with them. We continue to grieve everyday. People say0 do what you want to do. For me, this was an uncontrollable desire to be with him every moment at the nh. My exhaustion ended that but allowed me to begin to refocus-slowly. I have to relearn who I am and what I want. It is not easy. PLease come back and feel our strength and {{{hugs}}}. God bless you.
Actually, things got off to a pretty rocky start. As I said, the admitting process went smoothly and after a few hours he fell asleep and I felt comfortable leaving him. I came home, read the posts from all the wonderful people wishing me well and suggesting a glass of wine and a bubble bath. I opted for a good cold beer and a long hot shower. Didn't want to shock my system too much all at once. Had just settled in with a book about 8:00 when the nursing facility called. He had fallen and gashed his head open. Took about 10 stitches to close it. Got home from ER about 1:00 a.m. When I got back to the facility this morning at 10:00 he was sleeping. They said he had gotten up at 6:00 walked until breakfast ate all of his breakfast and went down for his nap. Woke up, patted my hand. I asked for a kiss - he kissed me and then he must have remembered that he was mad at me for leaving him there and whacked me (not hard), just enough to let me know he was still angry. I stayed with him until after lunch when he lay down for another nap. Leaned over to kiss him goodby and he pinched my breast, HARD, not the affectionate boob pinch that most men give their wives from time to time. I slapped his fingers(gently) and told him that I was leaving and I would be back tomorrow but if he hit me or pinched me I would leave immediately, and I will. I love him but I will not allow him to abuse me.
How my heart aches for you, having been through this last October. I cried all the way home each day for a month, which they tell me is part of the grieving. An empty home and bed after you have loved and devoted so much time together in the good and bad times is so hard to bear. Keep you chin up and know that you are not alone!