Old 05-25-2010, 11:58 AM #31 (permalink)
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Default Re: Guilt is visiting

My life sucks on so many levels at this point. Then I feel horrible for thinking that because I know what is happening to my husband. Do CALS have survivor guilt before they are even survivors alone, but are currently surviving together but separately? I think we must....this is a kind of a race and right now ALS is faster than we are - it is just overwhelming him and by extension us. I am prayerfully submitting attitude and my husband's illness to my Lord (yet again) and am praying for strength.
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Old 05-25-2010, 06:04 PM #32 (permalink)
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I've had that discussion with others, Mary. And with my wife while she was still alive. Yes, the guilt came long before she passed, carried beyond her death and only recently have I managed to free myself from most of it. It is, in the words of others, a useless emotion. I finally just had to accept that I did the best I could under unbearable circumstances. When I think about it, I have nothing to be ashamed of, I stuck by her right to the end. Sure, maybe I could have done a little more here and there or done things a little differently to maybe make her final months a little more enjoyable. The fact is though, that I was running on five or less hours of sleep for months at a time, working a full-time job that I really didn't have the option to leave and supporting four kids and their lives. I think I should be commended for just keeping my sanity (not sure that I really did, but I faked it pretty well). Now that I'm six months past her death and finally starting to accept it, I find I can forgive myself. If the tables were turned and I was on the receiving end of that caregiving, I think I would have been satisfied with what I did. That's good enough for me now.
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Old 05-25-2010, 10:03 PM #33 (permalink)
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Default Re: Guilt is visiting

Mary and Dick,
Just had a melt down with my sister in law regarding this issue. I often feel so guilty that I get frustrated at times with my husbands requests. They are all things that he needs me to do for him..but it still gets exhausting. I know that the alternative of not caring for him will be even worse then what I am dealing with now. But, this really tests a person. Every day I take a deep breath before starting my day with my hubby. I think the sigh is asking for strength to be a good caregiver for my husband. I mean he is really a wonderful man..so full of pride...a great father...a great provider. We have had so many wonderful times together and I try to hold on to these thought. However, our normal times as a couple seem like light years ago. I read once on this forum..be mad at the disease..not at the person. I have to keep constantly reminding myself of this statement. Sending understanding your way. Hugs too!
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Old 05-25-2010, 10:12 PM #34 (permalink)
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Default Re: Guilt is visiting

I've read a number of your posts, Dick, and have found them to be insightful, thoughtful and real. I know that you have already lived through what I'm going though and while I'm sad that you did - it helps me to know that I might come out on the other side with my sanity intact - but mostly that I might come through it with my love for my husband intact. Sometimes I feel stretched so thin and so exhausted and I dont' want to be pissy with him. Sometimes I think I've become his mother or nurse and ceased to be his wife - and that bothers me. But like you, I'm getting by on limited sleep, running the house, manage the caregivers, cook the meals, bath and all his personal needs, deal with his emails, his FB etc. === then I realize how thankful I am that the kids are grown and I'm not having to do what all ya'll are doing - still raising kids and trying to make their life as normal as it can be with a tragedy in the midst.
Kelly and Dick - I will continue to read your posts and remind myself when I'm out on a limb of your counsel and that I can do what I need to do.... but I do agree our times as a couple have slipped by and that's just so sad. Thank you both... this forum and you people are so important to me.
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Old 05-25-2010, 11:33 PM #35 (permalink)
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Default Re: Guilt is visiting

Dick, Mary and Kelly, as someone who is on the other end of the ALS stick from you three let me say Thank You. I know that it is not my place to be thanking you for looking after your loved ones but I want to anyway. Everyone who cares for a person with this disease deserves a medal, it has to be one of the hardest jobs in the world.
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Old 05-26-2010, 12:28 AM #36 (permalink)
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Default Re: Guilt is visiting

It means a lot, Barry, really it does. When things got bad I always reached back to those vows I took, for better, for worse, for richer, for poorer, in sickness and in health.... I meant them when I took them and I lived them to the end. I had a very long conversation with a counselor last September. He asked me if I was ex military (I'm not), but he was so impressed by my absolute dedication to those vows that I think I left him in awe. Personally, I can't imagine living any other way. As Mary said "my life sucked in so many ways", in fact I didn't have a life at all. But if Liz didn't have me to count on, she would have had even less than that. I have regrets, and guilt, for not making those last months the best they could have been, we had plans to travel this spring, but it is a race and ALS just ran us down like a steamroller. I take some comfort in the fact that she knew she could count on me to be there, forever. Liz was never very good at "thank you" but I really do feel that she appreciated my efforts, as imperfect as they were, throughout the journey. I can accept a thank you from you as if it came directly from her.
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Old 05-26-2010, 12:38 AM #37 (permalink)
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Default Re: Guilt is visiting

Quote:
Originally Posted by marya View Post
My life sucks on so many levels at this point. Then I feel horrible for thinking that because I know what is happening to my husband. Do CALS have survivor guilt before they are even survivors alone, but are currently surviving together but separately? I think we must....this is a kind of a race and right now ALS is faster than we are - it is just overwhelming him and by extension us. I am prayerfully submitting attitude and my husband's illness to my Lord (yet again) and am praying for strength.

I am prayerfully submitting attitude and my husband's illness to my Lord (yet again) and am praying for strength.[/QUOTE] That is exactly what we are meant to do, my dear. I do believe God never intended for us to be alone in our victories, defeats, and journeys.

Like you, I get so aggravated daily with this da@@ disease and the way it is affecting my family. My hubs and I did not have a good marriage for several reasons. Now he is gravely ill, physically wasting to nothing, and miserable mentally about it. Sometimes I am a true rip to him and I am instantly ashamed. That's humanness. However, I keep going. I don't know how, but so far, I have. That's God.
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Old 05-26-2010, 12:55 AM #38 (permalink)
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I love this forum. I am soaking up power by osmosis just from being in this virtual world. Thank you Lord for guiding me here! It is a healing place
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Old 05-26-2010, 02:16 AM #39 (permalink)
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I think it is called LOVE
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Old 05-26-2010, 03:03 AM #40 (permalink)
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Default Re: Guilt is visiting

You know, we were not perfect before this disease came into our lives, so why do we beat ourselves up over the fact that we are not perfect now? We try and they try, but is normal and really to be expected that we will snap at something once in awhile. Les is not very good at telling me how much he appreciates me, but he sure lets other people know, and that makes me proud. You are so right Irismarie, It is LOVE! HUGS Lori
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Old 05-26-2010, 10:47 AM #41 (permalink)
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Default Re: Guilt is visiting

Quote:
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My life sucks on so many levels at this point. Then I feel horrible for thinking that because I know what is happening to my husband. Do CALS have survivor guilt before they are even survivors alone, but are currently surviving together but separately? I think we must....this is a kind of a race and right now ALS is faster than we are - it is just overwhelming him and by extension us. I am prayerfully submitting attitude and my husband's illness to my Lord (yet again) and am praying for strength.
Mary, all I can say to this is DITTO. I hate to admit but one of my survival skills is to think only in the moment. I cannot think of the past or the future. Both are really sad places for me now so I think in the moment. Like you I am taking care of everything and I've been real hard headed about accepting help. I am just not there yet. I have always been a do'er with a take charge atttitude (ok maybe control freak is more like it). So I just havn't been able to say "yes" to help yet. Besides, I think I am managing ok for now. I want the help when I really, really need it. I'm afraid if I accept help now it might not be there later.
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Old 05-26-2010, 11:14 AM #42 (permalink)
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Default Re: Guilt is visiting

Judie, I am also a control person. My boss' wife is an RN and she is our basically our company health care consultant. She told me to find one thing that I could let go of control of - no matter how small or seemingly insignificant the "thing" might be - and let that item go NOW. She knows me and said I needed to start practicing letting small things be handled by someone else while I could because the point would come that I would be overwhelmed emotionally when I really had to have massive assistance to take care of him. So, that's what I'm doing. My first step is that I do not fix his lunch anymore. I let the caregiver do it - or friends of his come over and bring him lunch or like tomorrow his friends are coming to get him in his WC and walk to a restaurant close by. That's my starting point ( just started last Thursday ) and I'm doing pretty well with it - Hope you can find a little something to practice on.... xxxx's Mary
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Old 05-26-2010, 11:59 AM #43 (permalink)
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Mary and Judie, SUPERWOMEN Sisters, I can so relate - my husband didn't have ALS but was locked in his body from a brain bleed for two years. I always prided myself on being able to multi-task. As the CEO for a large non-profit I was always juggling projects, finances, personnel etc. As the wife of a military officer I was talented at hosting dinner parties for 4-8 people on a moments notice or cocktail parties for 200 with a week's notice. As a mother of one son I managed to attend school functions, host a housefull of teens with no notice and I wore all hats at the same time and kept all balls in the air ... Family and friends all depended on me to be the rock and organizer for any crisis or celebration that needed someone to remain calm, level-headed, and detail orientated.

Then, when my husband needed care I just figured it was one more ball........ and I didn't need help. Like Dick said, my marriage vows included "in sickness and in health". We were married 36 years when he fell ill and within six months I recognized I lost the love of my life as he began depending on me for more and more. As I look back I see that I began grieving long before his death. I also see that the stresses took their toll on me and now I am the one who is in need of care. Did my superwoman, stubborness to "do it all", bring on the ALS - who knows. But I realize the symptoms showed up at that time and I ignored them. In fact, I felt guilty for having them so made light of falling and slurring of speech.

My husband thanked me every night for what I was doing...verbally when he could talk, and with his eyes when he was mute. Then I really felt guilty for not doing more. I found us beginning to separate from one another as he lost more and more functions. He would listen to books on tape and I would retreat to the office to fight with insurance providers or pay bills that were beginning to whittle away at our retirement savings. (The money we were to use to do fun things - not this!) I noticed I was becoming a nurse and a caregiver and missed being a wife. I too experienced the ADD thinking - misplaced documents, didn't open mail, forgot to eat, etc.

Now after 4-years of widowhood, I know that I did all I could and more than I should. I never brought a caregiver in until two weeks before he died and then it was hospice. During that two weeks I found I returned to being a wife - the time we had was good - reliving memories of days gone by and I was able to let him go, knowing I loved him for all the good times we had shared. And I thanked him for helping me become stronger.

All that said, don't allow yourself to feel guilty for "letting go" of whatever you can. I know it is easier said than done. But R&R time for you, the caregiver, makes you a better wife. Mary, now that you have given up "lunch" what is it you do for YOU during that "free time"?

You are amazing women and don't forget that!

Diane
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Old 05-26-2010, 12:16 PM #44 (permalink)
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Default Re: Guilt is visiting

We are all soul connected on this journey. Guilt? I really have not felt that yet. Moments of frustration? MANY! I am going to be soulfully honest and I hope that no one will be offended. My dear sweet "Husband" is gone. He has been gone as my "Husband" for quite some time. I am his Nurse. I am his Mother. I am his advocate, his defender and protector. I am his best friend that will stick to him like duct tape. I love him. Our relationship has changed and become soul different and it is truly not one of a Husband and wife as we use to define ourselves. Maybe that is what some of the guilt and anguish arises from-that place of change and unmeet needs? No one ever mentions physical intimacy. I miss his kisses. I miss his arms around me. I do not see him as a sexual being. Does that mean that I love him less? Not at all. I love him from a soul deeper place in my heart. Matthew said to me many months ago that he felt "detached" from his Daddy and he wondered if that was OK, was it normal? Such brilliant insight from such a young person! We are detached in many ways one from the other. I think it is truly the only way that our hearts can keep beating on this journey. Detachment is part of the letting go process. Today I honor your hearts, your love and your courage and the letting go. Today I applaud all of us for being authentic and for telling the truth of our ALS lives with all of it's blessings and bruises. Full moon coming and time for us to HOWL! xoxoxox
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Old 05-26-2010, 03:53 PM #45 (permalink)
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Default Re: Guilt is visiting

REading these letters fills me with pride that I just KNOW you people.

SEnding so much love
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