It is 10 oclock at night and I went out to get the mail. That is the latest that I ever did that. While I was walking a half a block away to get the mail I kept thinking that if I got attacked at least I would get some sex. I thought I would never NEVER feel that way. I have been attacked twice in my life and it wasn't a good thing. I HATE MY LIFE. None of the people I know in town understand how I feel and never will they just look at me like I have three heads. I would never tell anyone but you how I truly feel because they are too judgmental and think they know it all!! I have not been touched or told I was beautiful or treated like anything other than a caregiver and slave for over 5 years now. I know that for some of you it has been even longer and I don't know how you do it. I feel like I just hit the bottom of this long whole and I am never going to be able to get back up! HELP!!!
Your desperation cries out for help of the professional kind. You should see your doctor and if you don't have a therapist, you need one with whom you can vent, get some help in how to relax and what you might be able to do get some help at home so you can get out some. I would wager many of us on this forum are on meds ( I am on Sertraline and it has made a huge difference in my outlook and in how I handle stresses and the lonely feelings..I can see things more clearly) we see a therapist, go to the support groups...and yes none of us like the life we are living now with our LOs declining, not conversing, nothing like the normal couples have, but we have had to learn how to cope with this..but we can't do it only on these boards, we do need to find medical support for ourselves and mental and emotional health is a big part of this. I hope tomorrow looks better for you....we all feel your distress and are worried about and for you.
Thank you Mimi, I am on antidepressants and tranqulizers and when it gets really bad I take Lorazipam but I don't like taking it unless I really have to because it is really strong. So far I haven't been able to find a pshyciatrist that I can afford but I will keep looking. I know I have to do something. I think right now one of my biggest problems is that I can't understand why he went from almost qualifying for hospice to not in the last year and I thought it was finally going to be over so it was a big disappointment. I know for those of you that still want their LO's around you probably don't understand that and I am sorry that I feel differently. What is Sertraline?
(((deb))) - I understand. It has been 5 1/2 years and he is not as bad as yours. But, wanting to cry for me is hard. I had an online friend that gets it ask me how I was and how hb was going. I told her I want to cry at times but can't do cause he is always there and there is nI o place in the MH to get away. When he goes to bed at night I stay up late because I like the 'alone-ness' (if that is a word). He is not sitting across the MH either in silence or repeating. In fact silence with him is usually only when I say something to him. Anyway, when I am alone the need to cry disappears - I feel 'free' so to speak. I wish I could cry after he goes to bed, but I have to hit on something that triggers it and I usually avoid those.
As for someone to speak with, check non-profit organizations as an option. For three years I did volunteer lay counseling for a Christian group in Beaverton, OR. Not all my clients were Christians but that did not matter. And, it was all free.
Oh Deb42657, I too am sending (((hugs))). My heart cracks for you and for all of us. While I have been cut off sex for quite a long while now, at least my DH still is very loving, giving me hugs and telling me he loves me. That goes a long way to help make it bearable.
Have you been reading the threads about dating or having a non-sex companion? I'm not saying you should do that and in fact I don't know if I could do it either, but if it doesn't violate your moral code maybe you could consider it. It doesn't have to be a real affair, even an e-mail friend who could somehow convince you of your value as a woman and reassure you that there is more to you than just being a caregiver....
Dear Deb, I know this has been such a very difficult road for you and I know how much you hurt. You are not alone in wishing that it was over....I love my husband very much and am fighting to keep him home and there are moments when I think it would be best for both of us if it was over.
Our local hospital has a program they offer to house bound caregivers - counseling and other support...perhaps your local hospital may have a similar program? Another possible resource is your local united way...perhaps a call to them would be good to see what services they may have available for you. I know it is difficult to find the help you need, we never seem to be able to but it's worth a try.
As I recall you hb also has FTD...a call to the AFTD headquarters may also turn up something. Just trying to help you find support...I'm not trying to give you more work.
Deb, don't feel bad that you're telling your real feelings. We're all in our own situation. I hope for your sake this hospice thing changes again and he does qualify in the near future.
its so very difficult to get thru all these special spouse issues especially when the disease goes on for years. Deb good ideas have been offered, you sound like a break is on the agenda so look for help in all areas possible. and if you can contact your medical association/ board in your closest area maybe they can offer suggestions for doctors who can offer you 'pro bono' consulatations without charge. they all have to put in so many hours for continuing education. many are able to offer free visits and gain valuable hours for recerts. a psychiatrist or psychologist may be able to help you get thru these difficult times. hugs to you. I am sure we all understand. also a psychoanalyst can be less expensive especially if in a group setting.
Hey Deb - Hear you and totally understand....we just stop feeling like a woman. I know it goes against a lot of people beliefs here and to each their own but affairs are happening all the time and they aren't getting caught. Not telling or suggesting for you to do anything just putting it out there. I'm not at the end of my life by a long shot.
First (((( Big Hugs )))) I am so sorry you are hurting so badly Deb. Though it is true I have never experienced these feelings or thoughts, it does not mean I can't genuinely sympathize with you. I do, very much. Are you able to get any breaks Deb? I like LFL's suggestion to call the hospital, if they don't have such a program ask to speak with a social worker, I found them very helpful. ((more hugs))
I am so sorry that you're hurting...this is such a long and lonely journey. Don't ever feel ashamed of your feelings. We are a caring group and there is no judgment. We may not have these same feelings or thoughts, but as a spouse/caregiver with any form of dementia we totally get it! You have my heartfelt sympathy. I, too, like LFL"S suggestion: call your local hospital and see if you can get some intervention from a social worker. Also, 24/7 Alzheimers hotline .....1-800-272-3900...there's always a counselor there to listen to you. Best wishes and many ((hugs)) Lullie
bqd, I hope so too! There are a few that I haven't tried and one that I keep forgetting about. The hospital I didn't think about, the united way is another good one I didn't think about. Social services I think would be a good one too. The Alzheimer's hotline, I keep thinking that they are probably so busy but that is their job, I guess I didn't think of them as being listeners. The only thing I have used them for is information. It is very true that my moral code would not allow me to have an affair but I do have male friends but I can only get hugs from them but I guess it is better than nothing like I get at home. Amber, I am with you I am not done living in a long shot and all I can hope is that after this is all over with I get a chance to live it!!!
I hope some of these places you contact will be just the help you need. Deb, please know I say this kindly, you do not need to have an affair or wait until your husband dies to get on with living. I can't remember it word for word but I think Sandi* said it best, she said she had never stopped doing the things that she enjoyed, she never stopped living her life and that when her husband died the transition to being alone wasn't as difficult because she had continued on with her life from the start.
I am younger than most here and I too feel I am not done living by a long shot either! The difference in me than some here is that I guess I do not feel I need a man to find happiness. Of course life was just better because of the love Lynn and I shared, but he wasn't the only thing that made life worth living. I heeded Sandi's words and slowly but surely have worked my way back to me, to revisiting and exploring all the things that made life so good before.
More than anything what you need is some breaks. I was not able to get them and I remember exactly how hopeless everything seemed. There is help out there Deb to get you some much needed respite, best of luck in finding the best options for you and your husband. ((lots and lots of hugs))
Deb,you say you've hit bottom. Now once you hit bottom, the only way you can go is up. YOU CAN DO IT! You are somebody, don't think of yourself as a slave or a nobody. I was at thepoint you are at,and I told myself this is ridiculous. I can not sit here and rot,I will not let this disease do this to me. As much as my DH would be upset when I was on the phone, I woud not discontinue my phone friends. I placed him 2 mo. ago and immediately got on with my life. There were many whom thought this was wrong,that I should sit home ,feel badly that I placed him. While I would never be unfaithful to him I do enjoy the company and conversing with male friends.We have to make a life for ourselves if we are goin to survive.This disease knocks out our selfesteem,but you can get it back again.
yhourniey, Lightbulb flash on top of my head!!!!! I have no selfesteem. I have been a daughter a mother a grandmother a wife a caregiver a slave...Where is Debbie? Beats me!!! I never wanted to be single, I love being married, I just don't love being married to someone who even before he was diagnosed treated me like I was nothing. He never physically beat me up until he got bad with the LewyBody but he was constantly eating away at my selfworth and selfesteem by not appreciating me as Debbie! I just don't see how I am going to get that back until this disease has left me alone. Sometimes I feel like I AM the one that has dementia because my DH is totally oblivious to everything around him. I know that there is a me in here somewhere but I'll be if I can find it.
That's the positive thing that caregiving does for us: our self esteem becomes healthy. We grow stronger. We know our worth. And no one, or anything that happens, will ever take that away from us. Coco and I talked about this recently when we had lunch together. We would never have chosen to go through this hell on wheels, but as we met each challenge and survived, we began the process of knowing our true value as human beings. I appreciate who you are, Debbie, and so does everyone here. You will be fine, and you will like Debbie when she has emerged even better than ever.
Mary, thank you so much for saying that!! I wish we could one day have lunch together. No one wants to do that with me, I think they are afraid of the big bad AD monster! haha
deb42657, please take to heart what Mary75* has said. EVEN IF you have many times where you yell, or feel so frustrated with your role, think just WHAT YOU ARE REALLY DOING! You are caring for another human being 24 hours a day, even if you do not want to , YOU ARE! I have heard so many say they could not do what we do. I remember how hard it was when I was fully immersed in it, not like now where Dado is in placement. But after he was gone, it all came to me what I had done, including the huge effort to get him where he is. Wow, I never knew, what a caring individual I could be.
And because of that, the wavering self esteem I have always had is so much better now, and I can really just let stupid comments roll off my back a little more, not get so angry and frustrated like I used to . YOU ARE A WINNER in life! Today I pray for many blessings of love for you.
As for the getting "free love" on the streets, though I know it sounds nutty, sorry, I just had to giggle. This part of my life is of course long gone too, yet I can truly say it is the companionship I miss most. When I think of having a "sexual" life again, it rather scares the pants off me..and I pull them right back on.
Hang on hang on. How I would love to have coffee with you.
Coco, you are so sweet!! As I was reading what you wrote I was thinking about how I AM doing it!! When you are in the midst of it you don't realize how important what you are doing really is because it is so frustrating and so lonely all the time that you just can't see the forest for the trees. I had to laugh at the fact that you were laughing because now it is funny but at the time I was out there I was serious. I can kind of relate to the scares the pants off! I have not had a man intimately touch me or kiss me or anything else that I wouldn't know how to act, I would probably cry!
I would love to have coffee with you! I have some folgers berry coffee that is pretty good!