I started thinking about how I wanted a normal relationship with my husband like everyone else around me does. A supportive, caring husband instead of a child who is only concerned about himself and what he wants and needs. I know it's not but right now this feels worse than being a widow because he is here with me but not really. I can't even get across to him how I feel. I know that I am just babbling but tonight seems to be worse than other nights and I don't even know why. I just keep seeing him slip from my fingers more and more and there isn't anything I can do about it. I hate it so much!!!!!!!!!!!!!!! I knew that the only place that I could go and everyone would understand what I am saying is right here. I have friends that say that I can call them anytime day or night but I can't see how they could mean that because they have their own lives and I hate to bother them with how I feel. They wouldn't understand it anyway. They would say that I am imagining how I feel and making it into something worse than it really is(like I am concocting it out of nothing) I am just being a drama queen.etc.etc.etc. How do I keep on going like this day after day year afther year and all the time it is just getting worse. I am already on anti depressants and I think I need stronger ones. I am on the smallest dose right now. My DH doesn't even have a clue about how I feel, I even tell him(which is a mistake) but I try anyway! dummy me!!!! I was so upset that he wanted me to give him a kiss before he went to bed and I couldn't do it and I just told him to go to bed and don't worry about it. All the time thinking the only thing he wants to do is go to bed and he doesn't want to listen to what I have to say anyway so I just shut up and I am wenting to you instead. Aren't you glad!!! :) Lucky you!!!!
I'm up because every 15 minutes my wife gets up again and gets dressed. She's scared because AD keeps taking her links to reality away randomly. I hate this disease too. I hate to see her aggitated and that I can't reach her because explanations don't help. I haven't been offered a kiss in over a year. I'm reduced to hoping our fat cat comes into my room and decides to sleep cuddled up against me. It's 12 pounds of something warm and it's poignant that I've come down to something so desperate.
Tonight I sat there watching a basketball game and drifted off thinking about having a real conversation with some nice woman and with a start realized I was fantasizing about a relationship again with another woman and looked over at my wife quickly. She was half asleep lost in something only she could see and the wear of AD was so clear on her face. It's another lovely new phase of this **** disease where I have been pounded into submission that I have lost almost everything we had together and am so starved for that lost companionship that I am starting to fantasize. It's clear too that this isn't going to go away. The terrible lonliness is real and I think it's accentuated by the physical presence of our spouse without it being the spouse we knew.
Three of the neighbors on the court we live on are older. The 84 year old man next door ploughs my driveway for me. He's up around 7am and when it snows which it's doing right now - I won't have to wonder what time it is when I hear him. The reason I mention this is because all the wives have my phone number. I told them they could call anytime day or night if they needed me. Two of them put it on their fridge. The men ignored me and pretended not to hear. When my phone rings at 3 in the morning which it will one day - I will go and help. Don't underestimate friends and neighbors. They can help with specific events - like absolutely needing to talk. My life changed when I stopped wondering why they didn't help and screamed in their ear "come and help me right now!" They're not terribly good at it - but it's something.
I just put her back into bed again. I arranged to have my case manager come next week and talk about nursing homes in the area and what wait times there are. If I ever meet Al Zheimer I'm going to rip his entrails out and strangle him with them. I can promise you bulging eyes and maniacle laughter will also be involved. How do you like it moosebreath!?! (canadian term of endearment)
Nothing can give us what we have lost back. And nothing can change that this disease is going to keep kicking us in the head until it's finally done and we face life without any part of them at all.
I wonder how it's all going to play out. I mean at the gates. I can see Saint Peter peering at me over his glasses pointing out that I touched myself 14,217 times. "That's a lot." I say, "But I also did this." I point out. "I don't know. I don't know." he mutters.
It's so much pain and it's so hard to keep going back into that alley to get your head kicked in again and again.
I'll tell you what though. You can have my life when you rip it from my cold, dead fingers and until then I wouldn't get too close because I am seriously tired of swinging between rip-your-skull-off frustration, rip-your-heart-out anguish, and the moments of normality that occasionally flash by the window reminding me of exactly what mountain of everything I cared about I have lost. Get back here! There's years of this left to go through.
One of the tragedies about this terrible disease is not just that it kills it's victim - it mangles the spouse that loved them. That's us. Well, I'm not going quietly.
Wolf, as usual, your post is magnificent. I am going to jump in with my less than eloquent comments. Deb, if I could reach out and hug you..you would hug me back, I am sure. At least we could get held by someone for a moment. I am walking in those footsteps with you. I hear your struggle with depression, and you know by my previous posts, of mine. I am now talking double usual dose of Lexapro and saw a Pshycitrist (sp) and he added another on top.
I understand the feeling of being SO RIPPED OFF with these last years of marriage. I know watching whatever friends I have left talk about their outings or this normal thing or that normal thing, is like a knife in my heart. I think to myself, well, I am going to do 8 loads of pee-filled laundry, change diapers 25 times, be completely alone with another person in the room who just babbles.
Our lives are very different from others. I have come to the conclusion that there is NO ONE who can understand this torture but us.
I have described myself as a widow with aliving spouse. I dont have a husband. He is gone. Isnt it strange to grieve and grieve and grieve, and the one you grieve is sitting right there? The years of grief damages our brain, Deb, so increasing those anti-depressants can help..no cure, but help. I am so ready to see him go, and grieve a loss like a normal person, but that is not to be right now.
Well, I guess what I am saying Deb, is you are not alone. We are here with you and have the deep understanding of your feelings. Even the feelings of not being able to reach out to willing friends. There is a point that they just CAN NOT understand. Drama queen-you are not. Not by a long shot. This situation IS as awful as you feel it is. Hang on..tomorrow may be better.
deb, the above posts have addressed many of my thoughts in answer to what you said. But there is one thing you need to do right away--stop expecting your husband to understand how you feel. He can't, plain and simple. I felt the same way in the beginning, even was hurt because my husband never thanked me for all the responsibility I had struggled to take on. Now I realize my feelings were understandable, but I made the situation harder on myself than I needed to. Our LO's become children in an emotional sense, they can't relate to what we are going through. Years later now, I actually think that's a GOOD thing, I would never want my husband to actually realize what his illness has done to both of our lives. He is in his fantasy AD world; even when he now does thank me for taking care of him, he doesn't have a clue as to the magnitude of what has taken place in both our lives. I bear the sadness for both of us, and while it's incredibly hard, I view it as something I am willing to do for my soulmate.
The only reassuring thing about these posts is that I am realizing that I am not alone in this disease, and that I have too many friends who are feeling like me. Wolf, (348,916,242)....and I probably still have 20 yrs to go... Deb...I cannot talk to anyone about how I feel...do you really think they can even understand how I feel??? WHO?? my mother?? ya right! My Brother?? well he might listen, but all he can say is "Oh well" My kids?? Gee dad, she is your wife and our mother. my friends? hmmm have not seen them in years, and their phones are all disconnected. But, talk to another alz caregiver and they not only understand, but are struggling with the same exact feelings you are. Points I now understand: 1. My marriage is over, the relationship is over, and there is not much left of it. I should divorce her. 2. I have CHOSEN to stay, where many would have left. I am here by choice, and will stay till the end. I am keeping my promise that I made many years ago. (so be careful not to drink so much on the night before) I have accepted that this is a progressive terminal disease, that will worsen (although I cannot believe it would get much worse) and it will result in death. Even though I may lose my spouse, there is always a possibility of a new relationship that can be even better than the first....My kids cannot replace their mother, and they will never have the option of finding another mother.... Wolf my dog only weighs 8 lbs, but I am feeding her excessively and hope she can gain weight...and yes, it is nice to have something warm..... But we all are traveling this path. There is no hope for our spouses, but we do not have to allow it to mangle us....Find some armor and keep yourself emotionally protected. Protect your inner self and keep it in shape...One victim is a tragedy, two is not a necessity. Our spouses are drowning in the ocean of alz...so do not jump in to save them if you cannot swim or do not have a life jacket, or the coast guard ready to pull you out. Tie a rope to an anchor, wear a life vest, have friends nearby to pull you out should you decide to try swimming to a doomed victim.
Well said, Wolf. I also miss human contact, closeness. My DH sleeps most evenings, I watch TV or read. One of my favorite programs was "Medium". Last night they showed the final show. I did not know it was ending and it took me by surprise. I wanted to cry. Then, I thought to my self that I have to get a life. I don't enjoy taking DH out to dinner or movies. He gets restless, needs to go to the restroom numerous times or just to go home. He can't follow movies or TV and when commercials come on, he wants me to turn the channel. At times, he gets on a rant about something and keeps asking the same question over and over for hours or days. The other day he told our daughter that he doesn't have any money. He has money in his wallet, which he refuses to carry. Which is just as well, since he was forever loosing his wallet, his credit card or even his coat. This is such a sad disease for the patient and the caregiver.
Maryd...Yes it is a sad disease for the patient, but it does not HAVE to be sad for the caregiver. There is no hope for the patient, but there is hope for us as caregivers. We just have to keep ourselves emotionally strong and protected. We will survive, but they will not
It is so sad to see what Alz is doing to all of us caregivers and yet we hang in there because we know we are doing the right thing. If we were all jerks we would just walk away and let someone else deal with the mess. But we hang in there because we made a promise that we will keep...even if it kills us. We have days where we want to through in the towel but we come here and get the encouragement we need to go on. Thank you friends!
Deb, and others...You have all expressed what I have also been feeling the last few days. For some time, it felt like I was "coping" so well, and people would say "You are so good, and so patient with him!" ...or my favorite: "I don't know how you do it!" Well truthfully, I don't really know how I do it...it is so difficult sometime to just take one day, one minute at a time. And though I haven't shed as many tears as I did in the past (my DH was diagnosed 5 yrs ago), I cry inside a lot...and I HATE what this Al Zheimer person has done to us all! Talking to all of you helps me more than I can say and helps strengthen the armor that I have been forced to put on....So thankful we have each other!
Thank you everyone, I knew that you would understand even the comments that I made that were said in anger and uncontrolled sadness. Even the one friend I do have can't cope with this sadness I face every day. She only wants to be around when I am cheery and positive. I don't blame her but life for us is not always like that. Today, after all the crying I am basicly emotionally dead. I will try to pull myself out of it because I know that is what I am suppose to do but I also know that it will be back in the near future to bite me in the butt again. My DH got up this morning like nothing bad had happened to me at all. It isn't that he doesn't care,(I hope) it is that he can't care. What would I do without all of you! You are there when I need you and I can't say enough how much that means to me. I don't have a dog or any other animal to keep me warm. I do it myself(keep warm that is)
Wolf, I am trying not to fantisize about another relationship but I think it is unavoidable. I keep hoping that when he dies I will find love again. I am only 53 years old but I am also trying to keep a promise that I made 14 years ago to my DH and in order to do that I need to keep my focus on him instead of what I could have in the future. Does that make any sense? Sometimes I think it does and sometimes I think it doesn't.
Sheltifan, no one on the face of this earth but everyone here would even remotely understand what we mean by feeling like a widow even with our spouses sitting right next to us. I agree with you about not being able to grieve the way we are suppose too. I know how that feels. Others would think we are crazy but this is our life and there is nothing crazy about it. Thank you for telling me that I am not a drama queen because to me that is a very hurtful statement. It implies that I am lying about what I am going through.
Maryilyn, I know that you are right about not expecting my husband to understand what I am saying I just keep hoping...but I think if I truly quit expecting it would be easier on me so I promise that I will try. It is just that when I see him in the room I think I shouldn't give up trying. But I think I have to for my own sake.
Phranque, what can I say...you are very supportive when you need to be and a comic relieve when we need that too. Thank you!(348,916,243 and counting) ;0)
bella, I don't know how to answer people that say "I don't know how you do it" either. I feel like asking them if they would like to try it for a while but I don't say that I just say "I do it because I have to do it"
When your husband, who cannot understand you or relate to what you are trying to tell him, asks for a bedtime kiss...give him one just as you would a child...he is a child now in a larger body. He can' t help it..
I know how you are feeling, I feel the same way a lot of the time especially when our "normal" friends or associated are telling us all about the wonderful trip here or there etc. And when they ask me how things are, by golly I tell them. I am not yet doing 6 loads of pee filled clothes and bedding but I have to fight to get DH into the shower, get him to change his clothes, eat better foods now and then then the sweets he seems to crave now ( used to be fruits now it is brownies or cookies). I just tell them in a matter of fact way that that is how it is and frankly it is a good thing for them to learn that not everyone has a life so full of normal stuff..and who knows, maybe one day one of them might just wake up enough to say..Hay how bout lunch..or how bout I take DH to lunch so you can do something you would like for a few ours...just maybe..
Oh my dear sweet friends, I'm tossing you all our well used Rope. Hang onto the big knots I've tied in it. I got through it, and you will too. Phranque you are so right about keeping yourself sane. It's not easy, I didn't do so well in that regard, but I tried and you all need to try also. The interesting thing is, the friends who disappeared during Dh's battle, have still not reappeared to socialize with the widow lady. Seems I'm a fifth wheel.................I'm trying to make new friends, but in a tiny village it's not easy and everything I find to do, costs more than I can afford. I do however, hold out hope that it will get better, I have to, otherwise what is there. I'm 55, I was robbed of a lifetime of hopes and dreams, I have to believe that life will get better. God Bless us all. Grab for the rope......... Arms around, Susan*
Susan - Thanks for the rope. I'm hanging on for dear life! I have all the feelings talked about here except one. I envy all of you who say that after the battle you’d like another relationship. Well not me. I don’t want to take the chance that I would EVER have to go through this again. I think about falling in love with my DH, oh so many years ago (43 to be exact) and how I couldn’t imagine feeling any other way about him. We all know that over time love changes, but I never thought that it would change this drastically. I also am thankful for all of you here. You DO understand & listen.
I told a friend the other day that I would like a relationship again someday, just never again marriage. Then I told her that the first time he mis-placed his keys..I would run for the hills!!! I think I may overly sensitive to any memory issue, what do ya'll think??
Deb - I talk things over with my husband too. I know he can't make decisions and he won't remember but I need to talk to someone. Since he is still able I discuss just like we use to. I owe it to him to allow him as much 'normal' as possible. This included talking, discussing, doing the things he still can even though it takes longer or I have to remind him to do it, and making sure it is done right. I also let him chat with others even though I hear him saying the same thing said before or makes a joke that is not funny. So far, no one seems to walk away from him. Usually I will walk and it doesn't take long for him to follow.
Deb i hope today finds you better. yes we are all married widows - i dont think the grief is much different except later we will grieve the loss of body along with the presence. now we grieve the loss of what makes them the person and their minds. divvi
Yes, divvi I am a little better, I do feel like that is what I have been doing, grieving, I don't think anyone would understand that because he isn't dead yet but here we all know what that means. It is almost like we have a different language that no one else understands. There is a lot more to the grieving process than I would have ever imagined.
When I read on here what some of the spouses say to their mates when they leave them at the NH or ALF...I want to cry. I also want to cry for all the grieving that others have. This condition makes grieving a long slow process and so painful. I hurt for myself and all of you.
That's why the call it the long good-bye, our mourning starts long before they're gone and continues long after they're gone.................................
Everytime I think about our unique grieving process I think about this man who lost his wife to a liver disease(the name escapes me now) She was on hospice care for about 2 years on and off. He was grieving the whole time and when she died he got remarried 4 months later. No one understood why he did that and got very upset with him because "How dare he get married so soon, he must not have loved his wife at all." One person even accused him of having an affair with her. Whenever anyone would tell me that I would say, "What you don't understand is, he was grieving long before she actually died, he had already said his goodbyes. Everytime he left the house he didn't know whether when he got back she would be alive or not and he went day after day, week after week, month after month, year after year, like that." Of course they still didn't understand even when I explained it. BUT I DID!!!!!
My daughter's husband died at 31 after a long battle from and accident and then cancer. My daughter remarried in 3 months. She had grieved for years and was ready to move on. She was young. It is a little harder to move on that quickly as we get older. But there is nothing wrong with it if you are able.
I had another mental crash on Friday, almost couldn't get out of bed I was so depressed, so I cried and slept it off. On my way to work this morning it finally hit me that I need to begin building a new life outside my husbands AD and my caregiver life because if I don't this disease will take me down as well. I have been dealing with this since I was 48 and I am now 56. My husband was 53 when diagnosed, now 61. He is in the middle stage. Everything he does annoys me. I am so angry all the time. Angry that I have been left with all this responsbility. I can't stand for him to even touch my hand. I know it is not his fault in my mind...but why is my heart so hard, I have no right to be mad at him. This is not his fault. I critize everything he does....I know it's not right and try to stop myself. Just when I think I'm doing better, he's disconnected the cable TV for the 18th time, and pees on the toilet seat, and wears his clothes to bed, and he doesn't even think about taking a shower...the list goes on and on. I hate this, and I hate that I feel this way towards him. Soooooo, I know that I have to to move forward with my life, NOTwith another man, but move on with discovering who I can be in the midst and outside of AD. It could be exciting considering I have been married since I was 19. Once again am hopeful. I have to be, otherwise I will crash thinking I have another 10 years or so to endure this horrible disease. There is an Early Onset "Socical Group" that he will be attending starting this friday for 4 hours. I can afford this (25.00). 4 Hours that I can be free and begin to explore the possibilities of the next chapter. I think that will allow me to become a better caregiver and also enjoy what time I do have with my husband the way he is today, becuase how he was before AD will never be again.
RLK I understand what you mean. I feel the same horrible mean feelings toward my dh. I know all the right things, that he can't help it, that he does not remember, and all those things but it does not help me to stay rational. I hate the way this disease makes me feel about the one person I would do anything in the world for. I wish you luck at trying to begin a new chapter. I hope to do that one day, just not now.
RLK and Mammie, I feel the same way both of you do. Some days I am okay but yesterday wasn't one of them! I woke up and didn't feel good and DH was being a pain. He went to shower and a while later came out naked and holding a tissue on his testicle. For some reason known only to him he decided to cut some of his pubic hair and got his testicle caught in the scissors!!!!!! After stopping the blood I clipped some hair from around the cut and put a band aid on. Dh kept on about getting the hairs off the floor and I told him to take his shower and I would get the floor when he was done. I was on line paying a couple of bills for his sister in an ALF in Ohio and not feeling good. I stayed in my robe until 1.00 which I have never done and Dh is asking do you think we'll stay married when I asked what he meant he said about me dragging around so I really yelled and told him I DON'T FEEL GOOD. That kept him quiet for the rest of the day. I hope I do better today, like you I know he can't help what he does but it still doesn't make me feel very loving towards him. I guess we just have to hang in and do the best we can.
It’s 5am and I am sitting here at work, knowing I should be doing something productive and all I want to do is cry. This morning the caregiver told me how upset my DW was yesterday, crying most of the day, saying she wanted a “normal” life and family. My DW is level 5/6 and knows something isn’t right, she just doesn’t remember what. I feel so helpless…
Jean21, I think you should remove all scissors from his reach. Also and other implements that he could use and cause trouble. Knives is another one. You never know what they might do with a sharp item when their mind is in a infantile state. Better to be safe than sorry and as others have said - this too shall pass. I never had this problem but I was aware of "it could happen". I hid the car and tractor keys and if he had EVER picked up scissors or knife I would have removed them immediately. Scissors, knives, car keys and guns can all be dangerous weapons. I removed the guns from the house.
Why are you at work at 5am? There shouldn't be such a thing as 5am.
I'm sorry your wife is feeling sad about not being normal. My specialist put my wife on a 75mg anti depressant and it helps greatly keeping her mood on an even keel. I normally resist mediciation; but, not when it's clearly required. The effect of AD on all involved is a serious and long term thing and if the crying persists over time it may be a better quality of life for both of you is she took something to help stabilize her mood. It might be worthwhile exploring that with the doctor if this persists.
My wife has been in deniable about AD all the way through. That has it's own price to pay for both of us.
Also, although it's too early to say this, I suspect you may be more 5 than 6. We are now late stage 6 and the idea of having an idea about being 'normal' is so far beyond her. She will mention getting 'better' or doing things but only as long as it takes to say it before something else crosses her mind.
We all know how painful this is. Believe me it will all pass far too quickly (and far too slowly). I now miss the very things that drove me nuts just 6 months ago.
I am lucky in that my DH knows he has AD. Seems to be upbeat about it all right now, he still says his life is good. Says I am taking very good care of him. I try very hard to keep my mood upbeat also and that is hard some days. Don't know what stage we are in, I guess 5. It is coming up on a year of the dx. I never thought I would make it. I can see so much change in just the last year. I hope I can make it through all of this and take good care of both of us.
Lois, The scissors are in his bathroom and are very small but I will remove them when I get the chance just so he can't cut himself anywhere anymore! I never had a problem about him driving, he gave me his car keys several months ago and does not have keys to the house. Now and then he will look for his keys and I tell him he gave them to me and he is okay with it. I need to keep knives where I can get to them in the kitchen because I use one or two of them each day. The way his memory is anymore I'm not sure he would know what to do with them. A few nights ago I fixed T-Bone steak for dinner, I put out steak knives and the regular knives with the flat wear. He was using the regular knife on the steak until I told him to use the steak knife.
We but kids locks on the drawers so that DH will not get into them. He was getting up at night and emptying drawers and putting some of the stuff in the toilet. HE has, at times, been able to open the drawers but it usually stops him.
Not crying, however, I felt like it. I was in the check-out line of the grocery store this morning. In front of me was a young mother, with a little girl about 4 & a little boy, maybe 1...he couldn't speak. He was sitting on the bench that holds 2 on the cart, there was 2 drinks from McDonald's in the top portion of the cart & a gallon of milk in the bottom of the cart. He kept reaching & whining for a drink, his mother was busy paying for the groceries. I could hardly keep from crying, since my husband can not speak to ask for a drink, he is just like that small child. I hate this disease!!!
I have experienced the same feelings expressed by all of you. I, too, am so lonely, missing my DH and aching to do the things we planned and dreamt about. He only wants to die. He is angry in the mornings when he wakes up as if to say, "Why am I still here?" We can no longer discuss things (stage 6) and hating the disease is a lost concept now. DH takes an anti-depressant and he no longer talks about killing himself, just that he wants to die because "he can't do anything." Lately, he doesn't want to go out of the house, go anywhere or see people. This is obviously better than wandering and agitation, but I am trapped indoors with someone who barely tolerates a kiss and swipes my hand away If I attempt to hold his or get a hug.We have caregivers lined up finally, and then the schedule breaks down to illness, weather (snow days) and other reasons. I try to read, listen to music or go swimming at the YMCA, retail therapy, visit my grandchildren to help stem the loneliness, mourn the loss of my living spouse and sometimes it works. Then, we will have an episode of some sort and I am back in the abyss again. I crave friendship and activities with my sisters or neighbors---you know--adult conversations, go to the movies, but those times are so few and far between. I rarely write on this site, but I do read and I am grateful that there are others who understand and can share some insights, and even a humorous story now and then. It helps. Thank you.