Denial.......? Fear?

Discussion in 'The Watercooler' started by timer lady, Feb 8, 2008.

  1. timer lady

    timer lady Queen of Hearts

    All of a sudden my husband is bent out of shape. He keeps insisting that he sees big improvements in my health & no one else is seeing it or acknowledging it thereby scaring me. Everyone - doctors, family, (okay that's everyone for now).

    I can't tell where this is coming from to be real honest. In certain areas there have been strides made; in other areas things are getting a lot worse & my appointment @ Mayo can't come soon enough.

    husband keeps insisting that I need to push my body to do the grocery shopping & laundry (lazy turd); I will & do do these things when my body is strong enough. In the meantime, I need help. He's convinced that my memory isn't that weak & that I should remember to do things weekly with-o having to be reminded (pay bills comes to mind) or have the bills sorted out for me so I can take care of it. And then I do pay bills - just some of them; there are days I forget how to do it & have to ask for help. Again - no biggie.

    Also, husband resents (not sure that's the right word or not) the amount of time I "nap" during the day. The medications prescribed during the day are to help with the prednisone agitation or "surely I will rip husband's head right off". A few weeks back husband told me to sleep when I can - that my body is trying to heal.

    husband practically yelled at me tonight that he didn't care if my brain was so swollen that it was ready to implode there have been improvements in my health. No one will admit it!

    AND..... I'm confused. He won't tell me where this is coming from ...... I asked him to please take the time & join me at the neurologist for questions (heck our GP will take an hour with him). NOPE?! I also asked him to check into couneseling or a caregiver's support group!

    Not for him - at least not at this time.

    Thanks for listening - husband is right! My brain is ready to implode.
  2. Josie

    Josie Active Member

    I'm sorry your husband isn't being supportive.

    I'm sure my daughter feels the same way you do. My husband thinks yelling at her will make her able to go to school.

    I think it is an attempt to make things better caused by fear and denial.
  3. nvts

    nvts Active Member

    Hi! I believe you, but I can also see it from husband's perspective so maybe I can shed a little light.

    In the 2005/6 year, my youngest sister (33), with her 2 boys moved out to New Mexico to make a go of it on her own. She wanted to buy her own house (without any $'s) and listened to her friends rather than me (doesn't she KNOW I'm always right? lol).

    She got sick. I mean REALLY sick. Her speech would get "slurry", had to walk with a cane, exhausted all the time, "tingly" sensation on and off all over, and aches and pains throughout her body. Her then 7 and 9 year olds were practically on their own as far as homework, cleaning, etc. She lost her job and had no real support system. All of us (including me) were convinced it was "psychosomatic" or attention seeking OR she wanted to come home and wanted to save face.

    My Dad went out and moved her back (after totaling her new truck - long story) and when she got here we were going to tell her how we felt. But this kid was my "baby" (another long story - not physically mine, but mine all the same). She came walking into my house (I live across the street from my Dad) and we talked. And talked and talked. All was right with the 2 of us (as well as my husband). The rest of the sibs are still BARELY speaking to both of us. She for being a manipulative user and me for supporting her.

    Thus far, it turns out she has fibromyalgia. She's still a mess physically, but now the kids have a life, so does she and we're still investigating treatments and things that are impacting her. She comes over for coffee and we laugh CONSTANTLY.

    Knowing that improvement will be occasional, knowing that this won't just magically disappear, knowing that this is debilitating on a constant, chronic basis, knowing that there are SERIOUS ups and downs, knowing that she needs a lot of support (both emotionally and physically); one LOGICALLY knows that she's going to feel lousy most of the times.

    Those of us that interact on a regular basis grasp at any and every straw that's out there. You and she are both lively, intelligent, beautiful people that we sit and watch on your good days and latch on to that hope that "things may be coming along". We don't mean to seem impatient, intolerant, mean or aggitated. We so desperately cling to the hope that you'll feel better, that we get frustrated with life (not you!!) that you seem better, but it's fleeting.

    We read everything we can, we listen to about 1/2 and we HEAR about 1/8th of that. We tend to latch on to any information that says that you'll feel better eventually. We are impatient because we miss our friend, but are wracked with guilt that we can't take some of your burden on ourselves to lighten your load. We're overwhelmed by the impotence of being unable to change things for you guys.

    So: we get witchy. We assume that with a little exercise or momentum that you'll be better than the day, morning, minute before. We grab on to the idea that we can help you feel better by projecting a positive attitude, but you guys don't feel well so maintaining that seems fake.

    Be thankful that he's being a little bit of a toad right now. It shows you that no matter what, he cares, he loves you, he wants to make you feel better, but is afraid that he's babying you.

    I know it's unfair for us to "cop an attitude" on the occasion. But trust me: I believe it's really frustration.

    "This too shall pass". It's just a mood. It's just frustration. He's PMS'ing and doesn't know how to handle it!

    I believe how you feel. Oh yes, I believe!

    Remember to smile. Remember to cry. Remember to rest. But most of all: remember to love: you, your husband and embrace life.

    We love you, your family on the board, and hope and pray that things will lighten up for you!

  4. mum2JK&TH

    mum2JK&TH New Member

    I agree. Sounds like fear. He is probably scared and is trying to convince you and himself that you are getting better in hopes that you will get better.
    I remember when I had a staph infection that there were concerns that I had flesh eating disease and husband fell apart. It had been my second serious medical issue and husband said that it scared him so much to think that he could lose me or something bad would have happened. As frustrating as it is, he is probably just very scared. You have been going through this for so long that maybe he's scared you'll never get better. But men cannot admit this as they are supposed to be strong for us :(
    Sorry he's being like that, hopefully he'll come around and go with you.
    On the other side though, maybe he has noticed small improvements that the doctors haven't noticed because he's with you more.
    Either way I am sure he's doing it because he loves you and is scared. Even if that sounds absurb.
  5. Marguerite

    Marguerite Active Member

    Linda, been there done that, to a certain extent. Long ago. husband has always been pretty good, but family - another story. My own family would have preferred to believe I was crazy, than perhaps really suffering. Co-workers didn't want to know, so I didn't tell them. But they still resented my disability and accused me of "ramming it down their throats" even though I said nothing. It was my changed appearance that was speaking volumes.
    A drama group I belonged to and had been a frequent leading lady of, suddenly stopped acknowledging my existence to the extent of announcing audition results by first name only, when another person called Marg got the role - they didn't make it clear WHICH Marg, because clearly in their minds, I no longer existed. Thankfully I was not taken by surprise with this, I simply observed body language to know immediately that they did not mean ME.
    The problem with fellow actors and co-workers - it was fear of their own mortality and frailty. I was one of the youngest, and here I was struck down with a mysterious and alarming ailment. If it could happen to me, it could happen to anyone, so therefore I was no longer acknowledged (so they could pretend that I, and my challenging disability, did not exist).

    With family members, it is a combination of denial and fear, but a different kind of fear. They did come round, in time. With friends - I lost a lot because I could no longer keep up with my previous lifestyle. But I have made new friends.

    I think what is happening with you, is a combination of denial, and husband feeling that you've been ill for long enough now, people are generally recovering by now. He's had a gutful, he wants you back the way you were before and perhaps thinks that since pandering to your illness hasn't worked, then bullying you out of it like a personal trainer, may have more benefit. And all these doctors who keep fussing over you - clearly it's making you focus on illness rather than wellness. In his mind. That's one reason he won't go see them. And the other reason - because he knows they will tell him what he doesn't want to hear.

    And maybe a part of this is hope - he really wants you to be well and is almost fantasising about it in his desperation.

    Sometimes, often - people can be really seriously ill, treated symptomatically, have lots of tests done and slowly recover - all without ever getting a diagnosis. I suspect this is what he thinks is your case.

    My suggestion - treat him like any difficult child. Just say, "I'm glad you think so, I really want to be well too." In the meantime, pace yourself. If he nags you to do more, tell him you need to listen to your body so you don't undo the improvements he has seen so far. He told you to rest - maybe that is what has triggered this 'improvement', so you need to keep doing what he told you, and rest when your body tells you to.

    Let him know that 'while you are improving, you still are not fully recovered', and so will need ongoing assistance until you ARE fully well again, to make sure you continue to improve. "This is frustrating for you and me both, but we must go carefully."

    There are other ways to cope, in the meantime. Make lists, get him to make lists. Cognitively, I'm STILL not what I used to be (or should be) and lists help me when I've got too much piling up. I also used to fill every spare minute, and found that when I tried to do as much as I used to, the majority of it didn't get done. I have needed to cut right back and look on every thing achieved as a bonus.

    I've got napping down to a fine art - I need to nap, but I break it up through the day (unless I'm really a mess, in which case I could sleep through an earthquake - I have, as a matter of fact). I also tend to not nap if there are other people (apart from difficult child 3) in the house. I time my naps so I'm vertical and coping (sort of) when everybody comes home.

    Laundry - I rely on everyone else to do their bit. All items for the wash must be put in the laundry by those wanting it done. Failure to do so - it won't get done. Some compromise is OK - I will empty laundry baskets, but only if they are put where I can easily get to them. I will not carry them far.
    All house mates must do the following - all pockets have to be emptied (I still check difficult child 3 - he collects stones, sticks, feathers, shells, discarded rubbish). Any stains must be soaped, sweat stains/smells splashed with vinegar. Again, I do it for difficult child 3, but I'm making him do it with my supervision. We keep a bottle of vinegar in the laundry, purely for the deodorising purposes.

    I do the laundry once a week. Anyone without enough clothing to last should either buy more clothing, or do a mid-week wash for themselves.
    I get help to hang out the washing - it takes a load off the family. My arms fatigue really fast if I have to hang out the washing. I can get it off the line, though.

    I've found easy ways to hang out laundry, for when I must do it. I teach those ways to whoever helps me - all shirts on a wire hanger, very top button done up, shirts fluffed out by being shaken, care taken to smooth out wrinkles with the hand. Once dry, they go straight into the wardrobe without needing to be ironed.
    t-shirts - fold over the clothes line, peg at armpits. Any stretch-knit fabric - same. Trousers - find the creases, fold carefully along the crease and thread them through a wire hanger, hang on the line that way folded. Again, done this way it all goes away without needing ironing. It takes slightly longer, but the time saved by not ironing is worth it. Besides, my arms don't get tired once the item's weight is taken by the clothes line, I have the energy to smooth and peg carefully.

    Getting clothes off the line - I get off each person's clothes at a time. All mine. Put away. All husband's - put away. And so on. I fold as I go. I used to put each person's washing neatly folded into a different-coloured plastic tub for each. It was then that person's responsibility to get that tub back to me, empty, by next washing day.

    If you need to, write these rules up on a big sheet of cardboard and tell everyone that you're getting organised and want everyone else to follow your new rules. You don't have to use your illness as a reason - this is just commonsense and training for an independent life for kt.

    I have more, but you get the drift. We shop to a list, not because I can't remember but because it's been shown to save money. No more impulse buying. I try to avoid having to go out on consecutive days, so I always (hopefully) have a day in between, to rest.
    I'm always prepared to catnap in the car. Even difficult child 3 is good about this - he sits there and plays his Nintendo DS quietly until I feel rested enough to continue the journey. It's the safe and responsible thing to do - I'm setting a good example for other drivers. It's not because I'm disabled, it's because I'm responsible.

    You see? You find another reason for what you're already doing, and you minimise its impact on husband as much as you can, without compromising your own management. If he wants to encourage you by telling you how well you look, thank him.
    I get people saying to me, "It's wonderful to see how well you are at last. I'm so glad to see you're no longer disabled."
    It's a statement of challenge - "don't you dare tell me you're still not well, you would be calling me a liar."
    I usually respond with, "Thank you, I'm glad you feel I look so well. It's good to know, I do worry that I look tired."
    It's a statement that is not calling them a liar, but nor is it denying my illness. And it's not rubbing their noses in it, either. They can believe what they ant, but I have not had to lie, nor challenge. Socially, it's the best option. People say, "How are you?" but they really don't want to know.

    A last word - forgive my atrocious phonetic spelling, but here is a recent lesson in Chinese. They say "hello" by saying, "nee how". It means "how are you", literally, but it means SOCIALLY, "hello". If you want to REALLY know how someone is, you say, "nee how-ma" because the "-ma" suffix is only a question mark. what its addition means is, "how are you, and I really want to know."

    Linda - husband doesn't really want to know. Not at the moment. He's burnt out, I suspect.

    Hang in there. I'm here if you need to dump on me. I think the same goes for everyone else.

  6. crazymama30

    crazymama30 Active Member

    I am sorry you are in this situation. I have to agree with the others that it is denial and fear. Your husband so wants you to get better.

    Try to keep your brain from imploding for now. :highvoltage:That would not be a good thing.
  7. Abbey

    Abbey Spork Queen

    First of all, hugs. I'm sure you're quite frustrated.

    I have somewhat of an insight to your husband's reaction. Years ago (actually it is when I started the current board) I was very ill. Day by day I went downhill...then with some new medications slowly came out of it. I could not work for over a year. husband was very supportive during this time. What I didn't know what that he was stuffing a lot of emotions. He had a big burden at that time with bills, J being in Residential Treatment Center (RTC), me being sick, etc.

    Fast forward 18 months and I finally felt I could actually do something around the house. It was right before Christmas so I had this grand idea to put up lights. Long story short, I fell off the ladder and shattered my left foot. I was actually able (not sure how) to put the ladder back and sat on the couch. When husband got home he looked at me and asked what was wrong. I said that I wasn't sure, but I think I hurt my foot.

    THAT was the straw that broke the camel's back. He lost it big time. He carried me to the car, drove me to the hospital and literally dropped me off at the curb. He said 'someone' would find me.

    I was devastated. The poor woman checking me in didn't know the history. She just kept saying...hon, it's probably just broken. Meanwhile I'm sobbing uncontrollably.

    So, ending to this very long story is I realize husband was under so much stress and pressure during those days. He didn't mean to be insensitive, but it's always easiest to strike at those closest to you.

    I hope your husband is able to help you with what you need. Most importantly, I hope YOU get the help you need.

  8. dreamer

    dreamer New Member

    I am sorry you are feeling like this, and sorry you have a health issue.
    I know my illness and my husband illness helped me handle my difficult child illness differently, and my illness helped me cope with husband illness differently.
    ALways I was the go getter and the helper and the one who did what needed to be done, for everyone around me. It was not very hard, cuz I have always been hypomanic, and I had the energy to put in very long days, and accomplish huge amounts. I was caretaker of all my sibs, (all significantly younger, one brother is almost 30 yrs younger, a set of twins almost 15 years younger and another bro 3 yrs younger)
    Mom sent me out of the house to the streets very young, but still called me back daily for free babysitting. I did it. And finished school, and worked to support myself....
    I worked physical jobs- mostly waiting tables, then as cpsmetologist, then selling real estate and then as a nurses aide and finally as a nurse. And I always worked LONG hours.
    My husband became ill, vague undefined symptoms at first, and he could no longer hold a job. I was confused, and scared. Ouur kids were quite young, son not even born yet. I felt abandoned. No docs were finding the cause of his illness. Becuz no docs could label his problem, we could not get disability and we depended on his very extreme good pay.....I had to double my work hours once again (had reduced them to care for our kids) and even then our income was one tenth of what it had been. But he was also so sick, he could do NOTHING at home. Becuz he had no diagnosis, my family and friends decided he was faking. SO they wanted me to leave him. I wouldn't becuz I believed he was ill.
    BUT I am sure I was not always pleasant around him or towards him. I was tired, lonesome, stressed. I know there were times I was downright hateful. I was angry a lot, becuz I kept feeling so overwhelmed. I did not feel like it was fair to ME that he could do nothing, and he could not even hold a conversation.
    Didn't "I" deserve more out of life? Our house went into foreclosure, couldn't he see our difficulties? Wasn't he SUPPOSED to be my partner, standing beside me?
    SOme people believe in mind over matter. Some feel anyone can do anything, if they set their mind to it. I believed that, and it had always worked for me.
    So- why wasn't it working with my husband?
    By then we knew we had a difficult child.and all her care providers were handleing her with a heavy hand and pushing her. She got surley, husband was still no help- and life went on miserably.
    eventually we got diagnosis'es for him, but it took YEARS. and he had a lot of wrong ones along the way. Adult ADD, depression, then they realized he had physical problems....brain tumors------lung damage, spine problems----and then came schizoaffective, he fell catatonic. By this time he had been non functional for 10 years. The physical stuff helped (for me) to explain some of it, the heavier psychiatric diagnosis'es explained more.
    Still people around us pushed on me to "dump him"
    I was seriously considering it. Life was so hard. By then he could not be responsible for hismself, much less the kids. I could not leave him home alone any more than I could leave my young son home alone. My friends and family were long since gone, angry I "permitted" my husband to be so non functional. They could not stand to watch me be so overwhelmed. (I suppose it never occured to them to HELP ME- becuz I was The One who always helped everyone else with everything- and I think they were angry that I could no longer keep up with doing things for them)

    Then I got sick. gradual at first, and I could push myself thru it. But when my Lupus and rheumatic illness finally hit hard, I was down for the count.
    For almost 3 years I was a quadriplegic, no insurance, no family, no friends, a very ill husband, a very symptomatic difficult child, and 2 other kids. One of those 2 also with health issues.
    Most of that time I spent in mind blowing extreme pain. BUT in between the pain, I was also slowly loseing my mind. I actually wished to die, wanted to die and could do nothing to make it happen.
    Gradually, I began to sort of understand some of how my husband might feel. My body had betrayed me severely. My mind was now also betraying me. You cannot SEE Lupus, you cannot always see rheumatic illness. People began to hint that it was all in MY head.
    While I was down, my much younger best friend began to have weird symptoms, docs kept saying nothing was wrong with her. Eventually they diagnosis'ed MS, and worse, then they kept saying new symptoms were medication reactions, but turned out to be melanoma. HER husband was frustrated, becuz docs were not figureing out what was wrong and kept saying she was ok....but she began to get worse and worse. He was frustrated. What he told us constantly was he could handle the workload, but he could not handle not haveing her companionship. But she was so ill, she was mostly incohereant.
    THen my mom also began to act different. My sibs all decided mom was looking for attention. They arranged an intervention. I had been estranged for over 5 years entirely, but I heard and by then I was useing a walker, and I went over there. I "visited her" and used my nurseing school knowledge and I decided 1. her medications needed evaluation, and 2. chances were her cancer was back. My brother in law is a pharmacist and he blew me off. Pulled professional rank, so to speak. everyone else was sure mom was simply trying to be a spoiled brat. SO they tried to handle the situation by playing hardball.

    Then mom passed away.
    Yes, she had cancer in her brain spread from previous other cancer.

    ALl these things pushed it home for me. It is hard to be ill, yes, for sure. But sometimes it is even harder to be a non ill spouse. It is hard to be ill, but it can be much harder to watch a loved one be ill. Hard becuz we are usually powerless to "fix" our loved one, hard becuz we do not have what we used to with our loved one, hard becuz others around us tend to walk away, becuz noone wants mortality right under our nose. WHen I was at my most ill, I did try to reach out to my sister once. SHe said- no- I keep unpleasantness away from me and my kids, we deserve better. YIKES.
    I first got very ill in 1999. I now have been up and mobile for almost 2 years. Dealing with my son and his eye surgeries- I have looked at my difficult child and my husband differently.
    ALl 5 of us have changed--- due to the chronic long term issues in our life.
    SOme days my husband CAN respond to me- some days he CAN hold a conversation. I treasure those times enormously. FINALLY I understtand there are simply some things difficult child cannot do no matter how much I want her to be able to do them-----
    LOL our sons school had the idea that to ackowledge his difficulties would help to meake him be disabled. Yeesh- when he lost his sight, they demanded he still continue to behave as if he were fully sighted. I now homeschool him. That mind over matter stuff does have a place in Life, but-----sometimes ya gotta be realistic.
    But when you love someone, that is very very very hard to do.

    I am not sure I worded thi s quite right, but I hafta get over to courthouse, LOL- I am running a tad late.

    Try to be patient. husband prolly is overwhelmed and scared to peices and might be getting pushed on by people around him. Same as yu need him to be patient with your illness, you will have to be patient with his coming to terms with it, too. And neither is at all easy. He probably misses you and things you used to do. It is hard to accept such changes.
  9. DammitJanet

    DammitJanet Well-Known Member

    Linda...Im another one who can say I probably understand. I hear the "oh you can do it, you just think you cant" about stuff that I used to be able to do easily, especially stuff that involves things where I have to use my mind. Paying bills, doing taxes...I just dont have it in me anymore.

    Here is a Letter to Normals that is about fibro but can be used for any chronic condition.

    These are the things that I would like you to understand about me before you judge me...
    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
    Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
    Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
    Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.
    Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
    Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.
    Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.
    If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.
    Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
    I depend on you - people who are not sick - for many things.
    But most importantly, I need you to understand me.
  10. Steely

    Steely Active Member

    Just wanted to send hugs. It must be awful to feel as horrible and scared as you do - and have husband start "acting up". I am sure it feels completely unloving and unsupportive, and feels like you are now even further wedged onto the island of lonliness.:pouting:

    I can give you rationale as to why he is doing this - but I think - bottom line, it does not really matter. His motive might be out of love, but he is not giving you what you need, and that is what matters.

    I pray and hope he will have a change of heart and want to attend a group of some sort that can help him process his feelings. And I hope and pray that you DO start to slowly make improvements and are able to slowly start feeling better, and get what you need from husband.
  11. Shari

    Shari IsItFridayYet?

    I'm sorry you have to add this to your load, Linda.
    While I agree with the others that husband has probably just met his max load limit on stress, himself, its still no excuse to go off on you.
    I hope you can work this out quickly, and you can both get what you need.
  12. Star*

    Star* call 911

    Two people are in love. They care about each others well being.

    One person gets sick, and the other immediately steps up to the plate.

    Time goes on and the sick person levels out, the partner continues with added responsibilities that used to belong to the well person. It's new, it's scary and it's uncomfortable, but that person does the best they can.

    Time continues and the sick person is still only leveled out- and the partner is now overburdened with so many things - the thought of loosing the person they love, the thought that this could be forever all the sickness, added responsibility, chores, loss of quality time due to illness...and the partner gets angry - angry at God, angry at the moon, angry at the partner even though it's not his/her fault they are sick.

    Eventually grief takes over - there are stages to this grief just like there are stages to grief over any loss beit life, love, possessions, time, health -

    The fact that he sees you as healthy when you don't feel it and no one else sees it makes me believe he's in the mind set of trying to convince you that if HE (your love, your mate) can see improvement - YOU CAN TOO.

    He's just tired Linda - this has been an awful ride for you both. And I did the same thing with DF and his back - I would say "HEY you look better today, nope you're not walking like you hurt, WOW you sure are moving better." and a part of me KNEW (Oh all of me knew) that he wasn't REALLY any better - I just thought if I put the idea in his head he would be. It was part of the grief of loosing the healthy person I loved and now trying to figure out how to live with this sickly, disabled one.

    He doesn't mean any harm - He's not trying to make you out to be crazy- He's in a last ditch effort to do everything he can do, say, be - before he admits to himself that you really ARE disabled now - and this is how it's going to be.

    He's a step away from acceptance of your condition and the new way of life he didn't ask for. ~ It's okay - he's just angry, tired and bargaining.

    Not easy on either one of you - but I admire him for going down with a bunch of fight. He couldn't possibly love your more at anytime than he does right now. It just doesn't seem like love to you - but he's fighting for your life. Or rather fighting for the life you both used to have.

  13. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Linda, I can tell you personally caring for a loved one who is really ill for a long period of time is a really difficult job. SO many mixed emotions come into play over and above just being a caregiver.

    There is anger that this "thing" has invaded your personal space that you share with your loved one. And I totally understand the anger when something seems like it has gotten better, and it doesn't seem like the person that is ill is even acknowledging it and taking that particular ball and running with it. Logic and common sense would tell one that no one will be running anywhere anytime soon, but personal emotions will override common sense and logic every time. It a little bit of hope, and d am it, thats what "I" am running with, and you better see it too, and if you don't, well, maybe I can make you get on that hope train with me, even if I have to bully you, make you mad, anything, even poke you with a stick.

    Its living in a perpetual state of fear. If you knew me personally and would get to see me when SO has a crisis, you would think, who is that person. I go into automatic robot mode, there are no feelings showing, am just barking at people who don't know whats going on with SO and there is no time for them to go thru any kind of checklist. Lists of medications are in hand, things he is allergic to is given out in an orderly fashion.

    I KNOW that there is going to be that one last time I put in a call to 911 for him, but have to deal on a basis of "this isn't the one". When he is in the ambulance and on his way, I fall apart for a few minutes, sometimes falling on the floor with uncontrollable shaking and sobbing, but I gotta get up, get my **it together and go follow him.

    Being a female caregiver, I guess I am lucky I can work out my feelings with my girlfriends and it helps me keep my perspective- I can't see that sharing with your friends working well for the male caregivers.

    husband is probably on major overload at the moment -any little stress comming from somewhere else is enough to him there.

  14. dreamer

    dreamer New Member

    Star, I like how you worded what you said.

    While driving to court, I was thinking more about this. Like I tried to say, the whole thing is hard on everyone.
    ANyway, I was thinking, I reached a turning point here- for how I felt at my husband and HIS illness and how I looked at my girlfriend and my son--- and even how I looked at myself? AT first with my illness, I was pretty much laid out cold, and laying here, when I COULD think at all, I was quite angry, volatile, ugly. I ws frustrated and kept screaming that when I got better I was gonna do this or that. I also kept putting everything off till I "got better" (well, truth is- I had no choice, I could not move anything except my mouth, so everything did just sit here undone) Then I would say well, I can deal with that after I get betetr. When I was no longer completely unable to move, at first I still had difficulty doing I moped around and climbed around the messes. Shrugged my shoulders at things a lot.
    Time kept moving forward and I began to realize Life was going on, and me being sick did not change that.
    I also realized I might not get "better" exactly. There was every possibility this WAS my Life now.
    Very slowly I had to learn HOW to live Life WITH these limitations. At the same time, I had to teach my loved ones how to live Life with me how I now am. We are STILL learning, we continue to learn, and I am now seeing this is kind of "normal" Maybe not to the degree to which we must adjust, BUT----- people DO change over time. Their abilities change over time.
    I had to stop phraseing things in a way that implied things would not stay this way forever. I had to stop saying- I will do THAT when I am better.
    I know sometimes when I input to threads about dealing with a difficult child, some people wonder what in the world I am doing or thinking. BUT living with my illness and watching my husband illness and my difficult child and now my young son-----watching the various mental, psychological and very physical difficulties? It slowly dawned on me, we are slowly adapting to what we can do, what we cannot do, what we might be able to do-----and more and more I find myself thinking of the words to the Serenity Prayer. Courage to do the things I can, etc etc.....Accept the things I cannot change etc etc........yada yada......

    Right now, today, THIS is how things are TODAY right now. I will never have today back, we do not get make up days.....TODAY this is what I am able to do------THIS is what my husband caan do today. Today. This is what difficult child can do TODAY. This is simply HOW IT IS. (I am saying - for me, for my family) And I will accept THIS ......

    I have NO idea WHAT tomorrow will bring. I have learned today IS a gift. None of us know if we even have tomorrow, and that is true whether we HAVE a serious illness or not. ANYTHING can happen. To ANYONE. At any time.

    Our day to day priorities have changed dramatically here over the last several years. Yes, I do still work toward long term goals, I do not mean we don't. But our goals have........evolved. If we have cold cereal for dinner, <shrug> If laundry cannot get done or is not folded perfect <shrug> We have decided to use our energy very cautiously- for the things WE find MOST important to US. Teaching my son to read has been one thing the whole family began to focus on, with awesome results. Teaching oldest difficult child to be able to go out of the house at all, we ALL worked on. Meanwhile the laundry sat mostly undone. One Christmas instead of decorateing our home and makeing a holiday dinner, we worked together and gathered with our community group to gather gifts and the 5 of us worked together to deliver some. Yes, it took all 5 of us to do so, and it took all my energy- which is why we did not have a huge celebration at home- becuz I could do one or the other, but not both.....and I could drive the car but not carry the things to the recipient. So- we decided as a family what we were going to do.

    Our life is NOT "Leave it to Beaver" Our once immaculate home is a mess......BUT we are learning still------and we are still kind gentle compassionate careing people. We do not have a rigid set routine and schedule-----but we do manage to attend to needs. We have just redefined what "need" means.

    The stresses of the illnesses that 4 of the 5 of us have, and the impact on the rest of us related to the particular problems any 1 of us has changed us dramatically.
    We had to find ways to reduce other stresses. We had to adapt. ALL of us had to- to accomodate ourself and to accomodate each other. BUT it is NOT easy. ANd yes, I agree with Star- there are stages to grief, and grief is what you experience when you face your own health crisis and it is also what your loved ones have to go thru while THEY face your health crisis. when your mom died, you had things you had to do to cope and deal with that loss. Soundds like you husband is struggling and trying to get to the acceptance stage of his grief for the changes that have occured due to your health problems. No 2 people will follow the same timeline for the stages of grief, and people can and will go back and forth and up and down in those stages. All of us here on earth are human......mere flesh and blood. None of us are perfect none of us are saints. we all have things we have to learn to cope with. YOU have needs, he has needs.....your needs differ from your partners. I am guessing that for years you both were able to FILL each others needs. You were partners, a couple- one had a need and the other filled that need. BUT right now this is long term....and both of you are without the other being able to fill each others needs. You need his help with the things you cannot do---and he needs help too. You are both victims of this illness. It has brought changes that are not fair to either of you. My husband always reminds me---he is not mad at ME for my limits- (HA! LOL- I always scream back, hey wait- YOU were ill and unavailable to ME first!) He is not mad at ME, he is mad at CIRCUMSTANCES. Bummer is circumstances do not hear his anger, I do.

    I used to scream I HATE BIPOLAR when frustrated with myself or my difficult my husband will remind me- dear, you hate the bipolar, but be sure to make it clear you do not hate the person with the bipolar.

    Now I scream UG! I HATE Rheumatic illness and Lupus-------and he quietly says, yeah I do too, but I do not hate YOU.

    All of us in my home have learned to try to remember, none of us went out and actively chose our disabilities, we did not go out and shop for some illness or limitation just so we could back out of doing things. We did not go buy a poked out eye or panic attacks just to be nasty to our partner or our parents or our children.
    ALl of them simply HAPPENED. They happened to each of us...but when they happened to each of us, they also affected those who love us.
    It is not fair to us, but it is also not fair to those around us.

    Now we try to work together to learn new ways of living our life in spite of our disabilities and limits. We help each other learn to live around our limits. We work hard to help each other live THRU these crisises and difficulties. It is not always easy.

    when I had to be alone, on my scooter and pretty frail, and my son had just injured his eye-I resented my husband most dureing that time. AT that time, he was quite physically ill- sepsis, pneumonia, respiratory distress, psychosis. I had to deal with sons eye issue alone----worse- 5 hours away at univ hospital. I also had to figure out how to take care of difficult child and easy child.......
    navigating pre surg etc with my son, while I was alone on a scooter was not easy and I hated husband for his being unable to pitch in with one single thing.
    AT that moment I did not CARE he was literally fighting for his life. I needed him with me whispering into my ear that our son would be OK. I needed him there holding our sons other hand.
    BUT do I REALLY hate husband? no. But I was maxed out. stressed beyond my limits. and then some. I was caught in the heat of the moment. I am only human. And the man I married and chose to be my life partner was not where I thought he was supposed to be, nevermind it was not his fault.
    I have wondered since then, did my husband feel the same way inside himself? Maybe he did- laying there in ICU all alone, did he wonder where HIS Life partner was? Was he hurt and angry I was not there with HIM? He needed me.......they thought he was dying. He had been told of son, but, he was so ill, he most likely did not understand.
    OK so thats an extreme example-----BUT.....please try to be patient with your husband. This is all something that he most likely was never expecting- and is going on far longer than he um.can handle- just like it is for you.

    It is not easy. Not for you, not for him. and long term? it just grows. NOONE ever expects to have to deal with such things in Life. Long term stress is SO awful. Long term illness is SO hard- on EVERYONE. And possible he may feel guilt- becuz gosh, he is your husband, why can't he "fix it" and watching you have to go thru this---watching anyone you love be in pain (or in health crisis) is excrutiating. and he must be scared. and his usual life partner is the ill person, so he prolly feels he cannot come to you for comfort. So he might fel abandoned.
  15. Coookie

    Coookie Active Member

    Sweet Linda.....

    For so many years you were the one handling everything. All the issues (doctor appointments, medications, etc.) with the Tweedles. :( and for husband. :(

    I believe he is afraid and also still trying to adjust to handling what was once the role you filled. :(

    husband's and my role has shifted somewhat from what it once was and at times I wish it could go back to the way it was... not very often... but at times.

    Your husband is stepping up to the plate and at times he probably will have trouble with that, not to mention the fear I'm sure he is feeling as he helplessly watches you in pain. :( Feeling helpless may be the operative word here. :(

    I don't believe he is angry at you, he is angry at your illness...but...he can't express it to that maybe... so you become the target. :(

    Dealing with the Tweedles is dealing with circumstances different than having to face his sweet wife in physical stress. I know when husband is not well it shakes me to the very core. :( (Don't know if that made sense or not but I know what I'm trying to say).

    He wants you soooo to be well, he is almost trying to WILL it with his words. I think that is easier for him than to admit his fear. :(

    Just some thoughts.

    Sending many hugs and saying many prayers.
  16. SRL

    SRL Active Member

    I think that those near to someone with chronic illness become keenly aware of how the emotional aspects affect the physical (and visa versa) in someone with chronic illness. I don't mean the "it's all in your head" theory, I mean that those observing carefully often note how one triggers the other and I wonder if your dg is exploring that aspect now.

    I never doubted that my friend was suffering from a serious chronic illness but I did see times when emotions significantly increased or decreased symptoms. Once she'd had a particularly bad week and the worst symptoms literally disappeared overnight when she got some bad news about another family member. I think shifting the focus helped move the anxiety to an external source instead of her own which was likely compounding the problem. It didn't make her less ill, but it did help her deal with it.

    I have no idea if this is where your husband is at but thought I'd toss it out there for consideration.
  17. Hound dog

    Hound dog Nana's are Beautiful

    I also think Star worded it well.

    husband is tired, stressed to the max (just as you are), and scared to death of losing someone he obviously loves very much.

    My husband does it with the cronic renal failure. Doesn't matter what I do, he just won't bring himself to accept it. Or he'll resent it. He can flux thru the stages of grief quickly or slowly depending on the situation.

    But plain ol' fashion denial seems to be his most comfortable spot. I can't say a whole lot against him on this when I see my kids doing the same, even easy child who is a nurse.

    I'll need to talk to them about my disease, or say DNR orders or Living Wills, or may dialysis or something...... And it's either a denial fest or a completely one-sided conversation. Or, and here's the one I love, I'll be swollen like a grape and sick as a dog and someone will ask me, "What's for supper, Mom?" And then be either angry or hurt that I'm not up to making it. So I'm left with no one to talk to over the nitty gritty of the disease or it's prognosis.

    Linda, stick to doctor orders and what you feel you're up to doing. Don't let anyone push you into doing too much. As for husband, I wish I had some wisdom there, but sadly I don't really. If he won't go for counsiling, and he won't let the docs talk to him, he's going to have to learn to deal with and get thru this emotional rollercoaster alone. At the moment I think he's just desperately grasping at the golden ring of Hope. And thinks if he holds on to it tight enough, and can convince himself and you that you're on the mend that it will make it so. Sort of a "positive thinking" gone wonkey thing.

    Sending warm ((((hugs)))) cuz I know how horribly frustrating it can be, even if it seems to be a fairly common reaction of loved ones to a long term illness.
  18. 'Chelle

    'Chelle Active Member

    Sorry for all you're going through, you and your husband. I think as others have said, that he is tired, stressed and afraid. You used to handle much more, and now it's on him and he's probably feeling overwhelmed. And guys need to fix things, and he can't fix this for you. Maybe he feels if he sees you as better, insists you're getting better, then you will be better and he's fixed the situation. He's also probably afraid you WON'T get better, and then where will he be having lost his wife and having to always handle everything alone? He doesn't want to have to face that vision. Your husband has to come to realize that getting well will take time. Maybe not on his schedule, but you're doing what you can to get well and no one wants that more than you.
  19. dreamer

    dreamer New Member

    I keep thinking of how to say what is on my mind without needing so many words to do so- I am not succeeding.but several people here have said some great things.
    I was so ----lots of emotions- when my husband was sick. I hated him sometimes, partly becuz he was sick, and he could not do a lot of the things he used to do. I thought it was unfair, I felt like I had gotten ripped off, felt like hey this was not part of the deal- I resented haveing to pick up the slack and do the things I always did PLUS the things he could no longer do and then add on that there were things for him that I had to begin doing- like feeding him?
    So many times people around me said things like - you deserve better, you deserve more, this is not fair to YOU.
    when we realized oldest was difficult child I was upset- among other emotions, and worn much work involved in having a difficult child. It put so much on my plate, and I was so busy all the time, every day, 24-7. Sometimes I thought WHOA this is more than I bargained for.
    Then I got sick. ANd boy did I ever- and suddenly no part of my body worked. and my brain sorta went on strike- in hindsight I think yes, it was partly the pain was so mind blowing, and the other part was some escapism. I could not face that here I was, ME who had been careprovider in my work life for comatose patients, and here me, who had been caregiver for my first husband, my in laws and more- and now I was totally helpless myself- me who had always been able to work thru anything---do what had to be done- and now here I laid. Not only could I no longer do things- but I now needed someone to change ME, feed ME. etc. SLowly I realized that my family had been acustomed to me taking care of not only did they have to take care of themself, but also now they had to also take care of ME. I had spoiled them. It was hard for them. They did not do a very good job...partly becuz they did not know how, partly becuz they were exhausted, partly becuz they were scared to peices. I guess me and them all assumed I would live forever and be in perfect health forever? We had to face brutal reality, and do it in a crash course against our will.

    Now see, - I used to have my own times of resenting my husband and difficult child and sons etc. I used to holler and whine that it was not fair to me that their issues were so hard on us here. Not fair I had to attend IEP meetings, staffings, endlessly. WRAP meetings, not fair I had to get husband to his day treatment, or do chores that should have been his. I as not always very good about makeing sure I kept my complaints away from their eyes and ears. I mean gosh- look, I was doing so much FOR TTHEM. Did they appreciate it?
    Well, after I was sick awhile- I suddenly realized, wow, now the table is turned. I now caused them to have to be out of THEIR comfort zone. My illness was impacting THEIR day to day life.
    Now THEY had to do the things I no longer could. Now before they went off to school they had to change me, set me up food, make sure I had a phone clipped to me!
    It is one thing to know this is how it "should be"- but few families have to FACE this reality day to day 24-7 to these levels. Sure we assume if something like this occurs in a family, we will all simply pull together, work together and things will magically fall into place. Reality is, it is hard. It is a demanding lifestyle. And not knowing if or when any of it will change, or get better, or God forbid- get worse? That adds to the stress. and the constant continued stress has an accumulative effect that it continues to wear people down. and it builds.

    Just like we come to this message board and sometimes we have a need to vent about how difficult our lives have become becuz we have a difficult child? The caregiver loved ones in the lives of chronically ill people also sometimes need to vent, sometimes feel overwhelmed, and sometimes do not know what to do, how to do it or even if they CAN do what needs to be done. Our mind can know what should be, or our mind can know what is logical, but when we live 24-7 high stress, and unsure future- our logical mind is NOT always what is going to guide our actions, our thoughts, and our words.
    I would hazard a guess your husband is prolly haveing some sleep difficulties of his own- between your erratic schedule- and his fears and worries- he prolly has some sleep deprivation going on.....even if it is low key, it is prolly by now relatively long term. This IS going to affect his ability to remain solid stable and logical 24- 7. Your medications prolly DO make you somewhat erratic etc--with mood etc.....and he may not always know whether something you are doing or saying is based on reality or mood swing or whatever, or if you remember something or not etc. High possibility even you yourself do not always know. Your actions and words may currently be vastly different than they used to be- and he may be wondering gosh where is my wife? who is this in her body? AAnd becuz of the effects of some of your medications- things he maybe used to be able to say or do and you would react to them, possible now you do not react the same.
    I know there were a lot of times I looked at my husband and said - (well, OK screamed) at him WHO ARE YOU? what have you done with my best friend? where is he? give him back right now! I do not know YOU what are you doing in MY house, get out! and there are LOTS of times now when my husband or one of the kids will be expecting one reaction from me- but this long term limits of mine has changed my expectations and my reactions and they say to me, wow- mom? is that YOU? Uh yeah, I think it might be me, maybe it is a new me---becuz see, now that I am simply so grateful that I am still alive and very grateful I again can walk? I no longer get unglued about some of the things I used to blow a gasket over. I am so appreciative that I have my husband to converse with SOMETIMES now....that I now am not quite so upset he cannot remember things for more than 30 seconds. I am so tickled to see difficult child did not suicide in the nite, I now do not care if she plays her music full blast. I am glad she is alive to do so, glad I am alive to have to listen to it. A new me, a different me. VERY different than the pre sick me.
    Now if I cannot make my hands cut veggies for soup- well, LOL, we have new choices. SOmeone else can do them, or we can throw them in the pot how they are- or we can skip them, or we can skip dinner entirely. I no longer struggle to do what I cannot at the moment. I no longer scream and demand someone else come do mostly I simply shrug and say oh well. See, it is not my fault I cannot always do it. and it is not their fault I cannot always do it. It just is. Will it be different tomorrow? I have NO idea. Maybe. Maybe tomorrow there will be a cure for my illness. Maybe I will be hit by lightening tonite. Maybe one of them will get hit by a car in the morning. Tonites soup pot will not be important tomorrow. Not my fault, not their fault. It just is.

    Yes, it is their right to be angry I got this darned illness. Yes it is my right to get angry they have their illnesses. It ALL stinks. Its NOT fair. To any of us. After we have our lil tantrum over it, we go back on moving forward, anyway. Hanging together becuz in spite of it all, we love each other anyway. Unconditionally. In spite of bipolar and panic, thru catatonia and fugues and disaasociative states and cancer, despite mobility issues and weird auto immune garbage, whetehr we can see or not......and as we go we learn new and better ways to get thru it and live life around all these things.
    And yes, we do manage to live around and thru all of it, so far. LOL. If husband is catatonic, we feed him and go about our business. If difficult child is panic struck we grab her hand and drag her thru whatever needs to be done, if I cannot walk, they toss me onto my scooter and on we go. when one of us says "this stinks" we all agree and go on. if one of us says hey, you did not do your share- we smile and say ok. acknowledge it and move on.
    Our most said thing might be----Love ya anyway.
    Love ya anyone.
    Or maybe- hey is someone gonna die becuz that happened or did not happen? if no- hey let it go, love ya anyway.
    If we wake up and all of us are haveing a GOOD day? we seize the moment, hard!

    Hugs to you------the things I said? Nah, it did not come easy, did not happen easy, and might not be the things that will work for you.....
    In any event, my thoughts and prayers are with you-------and your husband, and kt and wm. One family members illness DOES affect everyone and it is hard for everyone and hard on everyone. Many gentle hugs. and you always are in my prayers.
  20. Star*

    Star* call 911

    Linda -

    If I did word this well ? It's ONLY because I've been and AM where your husband is - and I waited 34 years to find the love of my life - and 8 months later it was like God played some kind of sick joke on me. I got out of an abusive situation and then it was looking up and then WHAMO disabled man.

    Keep your chin up - I'll keep my chins up for you too! :tongue: