Absolutely "normal" dementia caregiver emotion. The physical person I am caring for is not the person I fell in love with and was married to for all those years. It's not his fault and there is nothing I can do about it, but I don't like this new person. I take good care of him and always will, but I don't much like him.
I'm not sure how I feel. We've been married going on 60 years now. Long time, isn't? I cae for him. It really bothers me when he asks the same question over and over again. I really lose patience with that. Then I feel terrible. He's very sweet and affectionate. He certainly isn't the same person I married. I'd really like tohave a good conversattion with him. And several times a week, I get to rampbling on and on, expecting some return diaglogue. Don't get it and then I feel quite resentful when I know I shouldn't feel that way. It isn't his fault. I just don't know. Sure wish I did. Blessings on all of you!
Shoegirl - you betcha. Just this evening I went from I HATE HIM to I LOVE HIM in one hour. After the I hate him I go into my "it's not him it's the disease mantra" but sometimes I confess I just let that feeling be. With the roller coaster we're on now I can trust it will change.
I think it is a normal emotion with the stress we are under. They used to help us with work, decisions, vacations, problems conversations and now the whole ball of wax is on our shoulders. We know they can't help it and feel guilty for thinking the thoughts but sometimes it just gets to us.
Shoegirl-when I start to feel that way, I replace the word "him" for the words "this disease". I hate this disease.I hate this disease for turning my life upside down. I hate this disease for leaving me holding the bag. I hate this disease for making me so lonley. It's a little mind game that helps me keep things in perspective. cs
That was one of the reasons I started this website - the guilt that I was the only one feeling this way. I didn't know who this person was that I was living with, but he wasn't my husband. I didn't like him; and I wanted my husband back.
Log onto the home page - www.thealzheimerspouse.com, look on the left side, and scroll down to "relationship repair". I'm willing to bet it says everything that you are thinking and feeling. As I re-read it just now, it struck me that the last part about "What I still have" has changed quite a bit in the 2 years since I wrote that section. Sad.
I think we all need to give ourselves permission to be human. After all, we are. Along with that comes a whole range of emotions both positive and negative.
Yeah. Not hate exactly though. It's just that I feel annoyed and intolerant of someone who, for 20 years, was my best friend and set my neurotransmitters a'hoppin. I'm not a good nurturer, in the sense that people have different gifts--nurturing, happily & lovingly, is not one of mine. As I watched my mom caring for my dad (who died recently after declining from Parkinson's,) it was always evident that it came more naturally to her, and that their relationship, all along, had had a strong caregiving, nurturing component.
My relationship with my husband, otoh, was 95% about mutual compatibility, personality, and friendship. So now I feel left with the 5% that I wasn't ever very good at. It's easy to feel aggravated.
Those also are my feelings exactly. Not only do I have to bear the brunt of all of the decisions, etc., I have to be deceitful at times and I worry that he would hate me for that because we always had such an open and honest relationship. That is the hardest part for me to deal with. Somewhere in there is the man I married and on rare occasions I get a little glimpse of him, but not enough. Not being able to discuss the problems with him is slowly eating away at me, but he will never accept the truth of what is happening to us.
Emily, the 95/5 so explains our situation. Yes, I too am left with the 5% I was not very good at. But, I'm thinking we get a teensy bit better as time goes on.
I know. It's terrible the way I feel sometimes. There are times when I wish I had never married him. Then I remember the good years we had together before AD. I hate having to do everything myself. I've always been a very honest person but like you, bookworm, I have to be deceitful at times. I've changed my POA as I know he isn't able to make any right decisions for me now. I wouldn't dare tell him tho. I'm having that minor surgery in a week. Im' not telling him until afterwards. He'll be at day care. I don't want to have to deal with him at the same time. Actually, he wouldn't even be concerned about it, as we've discussed on another thread.
I thought I hated my dh, but after some time in the nh I realized it was the darn AD I hated, the caregiving that made me so tired and worn out, the constant wondering and bickering, the bad decisions he made to lose all our money, now the love is coming back, sometimes I do get frustrated when I think about the money and how am I going to bury him when he passes, but the good times outweigh the bad we loved each other and had good times together so yes it easier to love him now that I can see clearly all our troubles were AD. Gail
I like the idea of reminding myself that it's the disease I hate.... but sometimes it's so hard. When he's yelling that I'm a g.d. liar because he doesn't remember something I told him, then It's really hard to remember that it's not him i hate. It's certainly not easy, and not anything any of us planned. 2 weeks ago, I was very ill, had gotten dehydrated, they are still trying to figure out why. Today I have to go for a sigmoidscope. over the weekend my daughters inlaws were asking how I felt and what had happened. he got mad because I hadn't told him.... HADN'T TOLD HIM.... how could he not know. But I try to remember it's the disease, not the man.
Being allowed to despise what this person has become at times, i think is just as needy an emotion as laughing or crying. if we think back i am sure we can find an instance during the yrs together prior to AD where he had a stint of the hateful feelings as well for some reason and didnt feel all the guilt associated like now. more than really saying we hate the person themselves we can turn it into ' i hate that i have no power over the disease or what its doing to the person i love, i hate that i am unable to control the negative feelings or irrational behavior, i hate that our family is forever changed by a disease that has no hope or cure, i hate that my spouse is dependent on me to manage both our lives/affairs, i hate that my spouse thru no fault of their own, will leave me and there is nothing i can do that will prevent the inevitable. indeed i think we have a right to hate at times. divvi
I realize, too, that it is the disease doing this to my spouse. But, this hasn't been one of those fairy tale romances, either. Over the years I have been abused and embarrassed in front of our friends and family, humiliated and betrayed. One might say that that was my fault for allowing it. Now, I understand that, but I thought I was in love with my partner. Now, I'm angry that I made the decision to marry him in the first place, decided to stay in a bad marriage (he always apologized, always said it would be better, always has told people how much he loves me), and mad as hell that he gambled all our money away, our future, day-trading. Angry that he had made no plans for our future .... not even a life-insurance policy. I was always only a wife and mother and I swear, all that natural nurturing and caring feeling has gone out the window. I thought when I got him home from the nursing home he'd be better off. His appetite increased, but he is just as lethargic as ever, and lies around all day wanting me to bring him every need. I feel like I can't leave the house and have no real life. It affects my own outlook and manner in which I live my own life....sometimes just piled in the bed or in front of the tv all day, doing only what's necessary. I, for one, the bad board member, can say I really can't stand that man upstairs. He is under control with medications. He moans and groans and sometimes yells from pain that he WILL NOT tell anyone else about and it drives me nuts. I cannot afford the nh and am only hoping to keep him home long enough so I wont have to live on pennies. If he dies, I won't be able to recieve his SS until I'm 62....or is it 65 now? I'm in my early 50's. He thought I'd get it soon as he 'went'....also, said to me once years ago that he figured my PARENTS would take care of me if something happened to him so he didn't worry about it. THis was a professional man, a respected Physician, not a man with an eighth grade education. Yep, this is something I've voiced before (my dislike, or sometimes hatred of this man....okay, the disease, but it manifests in the PERSON) on this site and taken a lot of flack for it . Now I see I'm not alone.. Vented. Feel validated.
What cs said was right. Substitute the disease for the person. It is hard not to feel guilty for no longer loving your spouse-but this disease has taken everything from us.
Oh Shoegirl, we are all in the same boat with you. Thanks to Phranque, it is no longer sinking, lol. Let's face it, the person we all fell in love with is gone, the body may be similiar but the personality, sense of humor, all the little things that caught our attention and our hearts have vanished. We live with the memory of what we had and that keeps us going, and caring for this different person. There are so many emotions, yearning for love, guilt for yearning for love, exhaustion, and the guilt for feeling exhausted, the need to escape for a bit and the guilt for having that need. The list goes on and on, but I am learning that we need to do our best, and accept that our limitations. It's not easy to admit we are human, with human limitations. Just keep posting and posting and posting. We are all in this together, thank God, we do not have to take this journey alone.
Yes Thank God! I will be eternally grateful to Joan for starting this safe place, this respite. Being able to talk to you all and vent has allowed me to piece together the tattered shreds of my sanity on more than one occasion. I know I can be very hard on myself and have high expectations of myself. And every time I express raw emotion here, my first thought is geez, does anyone else feel like this? And always someone does or can at least understand why I feel the way I do. Not being alone, is so comforting...not that I would ever wish this on anyone.
And I do blame the disease, the Kinder Gentler Wiser Shoegirl knows that, but inside of her there is still the young starry-eyed girl who once upon a time fell in love and thought she would live happily ever after. Somtimes she surfaces and her heart is broken.
((Shoegirl)) You can allow yourself to feel your broken heart. I can think of no sadder way to lose ones spouse than to this horrific disease. You are losing your dear B. inch by inch... let yourself grieve for your loss. ((hugs))
There was a time when I carried hate in my heart towards this stranger who held my husband hostage. At times I would feel guilty because I knew "My Lynn" would never have hurt me that way, physically or emotionally. But then I came to realize, if it wasn't my husband, but the disease causing him to act as he was...then I could carry that hate. It wasn't aimed at "My Lynn", and somehow that made it easier for me to survive.
Let go of the guilt. Hate is an emotion, you are human and are suppose to have them :) Big hugs of understanding ((hugs))
Yes, I've felt this way too. Sometimes I hate to even look at him. I've almost completely given up trying to converse with him since he usually just doesn't comprehend.
Oh converse! I also have almost gave up trying to converse with him.Even now I forget sometimes, and get excited to tell my husband something, then I remember there really isn't any point. I planted Knock Out bushes...they are all in bloom & look great, as we were leaving one day, I told him to look how nice the roses looked....he looked at the neighbors house, then noticed a jet...so much for the roses.
Same here Kadee. I will point out something for him to look at he will look at everything else. So frustrating to not have someone to share these moments with. I will tell you I am sure your Knock Out rose bushes are beautiful because my daughter has some red ones and they are beautiful. Her carpet roses were also beautiful and mine are little and puny. Could be because I neglected them. You think!!!!
Conversation would be wonderful. I have learned to keep my mouth shut. Most any comment I make seems to "open a new can of worms" with him so I've learned to just keep quiet. Our conversation is on the level of one you might have with a sales clerk, very cordial but superficial.
I've got knock outs too, and they are quite beautiful in the spring...covered with red roses. Prolem is, here in TX, they don't like the heat that much I guess, and quit flowering until a period of heavy rain, then they take off again. (Maybe it's the water???).
Weejun, Imohr, Kadee and the rest.....do you mean that the inside of your houses are as quiet as mine most of the time? I've really been lead to beleive that everyone (most everyone) still tries to have conversation with thier spouses. Not here. Only the most mundane comments. "What do you want for dinner?"..."Whatever you want to fix", or "I'm not hungry unless you are", or, "Didn't we just eat?"....."What are you watching?".... "I don't know, I think it's the TV". I feel like John (when he's downstairs) is kinda like something left in the middle of the floor that I have to step over all the time. A body in the way, taking up space, someone I can't help with anything. Wish I could turn his and my own life around. Wish I had some of T-J's roses (GO WATER THE ROSES, JOE).
Pretty much the only sounds in my home are the radio -- played softly because it annoys DH -- or his TV blaring. Oh, and Sissy barks once to be let out or in and Dag meows ever so quietly if he can see the bottom of his food bowl.
my DH complains because I dont' talk to him. I talk to him, but I cannot sit for hours on end listening to his problems with his first wife, or telling him for the hundreth thime that yes, his uncles died. Gee, I'm tired.
I didn't know what knockouts were, so checked them out on my son's website http://www.robsplants.com/plants/RosaKO.php He only has a very young one, but it looks lovely.
By the way If you want to know anything about any plant, this is a good place to start (says the proud mother). Just google Robsplants.
Well, I appreciate hearing how you all don't attempt conversations anymore because there's little point, AND the thing about how when you point to something he looks everywhere but there. So familiar. Nice to know I'm not alone, as always.
Geez....I thought I was the only one with that issue....pointing to something that is well within Johns line of vision and he insists he doesn't see it or just looks in another direction. When I insist on his looking, "No, No, over THERE, John", he gets angry and says he's already seen that. *sigh* makes me sad because a lot of times I'm trying to point out something I've done that I'm really feeling good about...accomplished. No one to share much with.
I put myself in my husband's shoes, body and mind and wonder how I'd feel ........ I know I'd feel VERY, VERY hurt to hear, feel or know that he had such bad feelings about me ,if the situation were reversed, so I work very hard to not harbour those feelings ....... he can't help that he suffers with disease, he didn't ask for Alzheimer's Disease, Parkinson's Disease, Macular Degeneration, Cataracts or loss of hearing, he did not ask to be both bowel and urine incontinent and to loose his dignity because someone else has to take care of his personal needs ......... he just wanted to be able to live out his later years with some sort of normalacy and dignity but that isn't possible now .............
I know none of you asked to spend your later years being care givers, suffering such extreme stress and exhaustion, I am too, but, think about what your actions and words, or non-words say ....... they truly speak volumes and is that fair to your loved one? ...... you are still mentally and physically functioning ......... they are not.
I agree with you Bar-bra. none of us want to spend our years in caregiving but we do need to keep in mind they are still living breathing human beings and that they cant help what they have become. divvi
I agree with you Barbra and Divvi - but some of us here say the things HERE and NOT to our spouses, we need to let out a scream. We need to have someont to scream to!!! and this board lets us do it. Others of us make light of it, and that's our way of coping. But not all can.
True, but it's hard to put on a smiley face when they loose poop and pee all over the clean pad you just put under them, and with great effort, I might add. So I say "Oh crap!" when that happens, and I don't tell her, "I'm not mad at you, I'm mad at the situation"....she wouldn't understand it anyway.
"And I do blame the disease, the Kinder Gentler Wiser Shoegirl knows that, but inside of her there is still the young starry-eyed girl who once upon a time fell in love and thought she would live happily ever after. Somtimes she surfaces and her heart is broken. "
Shoegirl, I don't think I have ever or could ever express my feelings better than you did with those two sentences. Thank you for that. I had a good cry. The young starry-eyed girl, needed a good cry."
True, they cannot help what they have become or are going to become, but this is a place where we CAN give voice to thoughts and feelings we would NEVER share with our spouses or anyone else. It is here that we share our innermost thoughts with each other, because we understand them.
A lot of our stress comes from hiding our feelings from our spouses and the rest of the world, while we are trying to be calm, patient, understanding, and loving, often in the midst of verbal abuse, physical violence, physical exhaustion, mental strain of trying to anticipate their needs, cleaning up after them, and listening to the same questions 20 times a day. So we come here and vent those thoughts that we would never say out loud to anyone else. And that's okay. That's why we're here.
Texas Joe, i live with what you are going thru every day:) i will probably the poop queen til eternity! - yesterday i bathed DH 3 times. 3 aftershocks, you'd think i''d learn. its a , 'here we go again'... i have got a bath/change of clothing down to 12min...:)divvi
Thank You, Joang. This is one more complicated journey we are on. My mother always said I love you but I don't like your actions. Being older than some of you on this site I don't always feel good myself and cronic pain is a way of life for me. I am afraid my "saintly" halo tends to slip sometimes.
we need a guiness book of records referenced to AD/Dementia:) how fast can you change a poopy depend /how fast can you take the keys to the car?/the least amount of sleep during a day caring for AD?/ the longest amount of sleeping hrs during the day for an AD spouse?/ longest amount of days between baths/showers? would be interesting. any others?divvi