Old 07-13-2016, 11:44 PM #1 (permalink)
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Default Warning...can't find a title but just rambling

I know that everyone is dealing with so much so I am hoping that something from my rambling below helps someone else so I don't feel so guilty. I apologize ahead of time but I don't know of any safer place to share my feelings.

I hate this disease for taking my husband from me before he is even gone. He no longer talks to me unless he has to. He no longer wants to hear about my day or thoughts. He doesn't want to talk about his issues or the future. I can ask him how he is doing and he says the same thing every time. I am good. I watch all the changes in silence. His legs, hands, neck, breathing, eating, weight and his face. It breaks my heart.

This is the man who loved me for 17 years. He is the one who taught me to love, trust and help me to put the nightmares of my childhood behind me. Because of him, I was able to create a successful career and always felt loved. Now, he doesn't let me help him at all. Thank goodness for his brother.

I am so unhappy when I come home and I can't bear the silence or emptiness. I work myself to death. I can't share these thoughts with anyone because everyone believes I am so strong. That is so far from the truth.

I am still messed up and guilt ridden from my moms sudden death in Feb. How can anyone have stage 4 cancer that is living with you and you not know?

I don't have the extra time or money to seek council but am on 100mg of Zoloft and take sleeping pills but feel like I am in some horrible nightmare and am screaming from the inside. I feel like I have lost everything and am on the edge of a cliff. I know I will wake up tomorrow and make it through another day but dang it this disease blows. No kisses, no hugs, no tenderness, no words, just silence.

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Old 07-14-2016, 01:15 AM #2 (permalink)
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Default Re: Warning...can't find a title but just rambling

Never see someone like me tell people in DIHALS they are taking our precious time and think it would ever apply to you.

You are the kind of person we need our time and energy freed up to support!

Firstly I'm so sorry you feel that internal scream, you know I've described it that way too, and for me the zoloft stopped that. Well I guess I should say it muffled it enough that I could go on. Yet when I say that - at times, like when he would look at me with dull eyes and say "I'm fine" and he was anything but, the scream would rise for sure. It may have been one thing if it seemed he felt he was being kind to me or something by faking it, but you and I know that this is a total shut out response. He shuts you off from him and himself off from you. That isolation is the worst.

At this time we need our relationship to be the strongest it possibly can, and instead it is non-existent.

I'm feeling a real wave of anger rising me as I read and respond to this post. Anger at ALS the monster that just takes it all. Still over 2 years since losing Chris I'm more angry at what it did to our last year together as a couple, or as no longer a couple, than I am at it taking his life.

You get it out talking here, or to me or anyone you connect with here privately. RANT and do it hard, you must release this pressure. You know from reading my story that I can identify with every single feeling - this is real sh!t girl, it's the biggest load you can crawl through.

So far as you mum, I want to tell you a story.
At the koala care centre, one of our hardest workers died from cancer last year.
OK we all knew Pat had a sore shoulder. We all knew she was slowing down a bit and not as clear headed sometimes. We all thought she should see a doctor. Some people there knew her very well, and some for many years.

I believe she knew it was cancer. She never went to a doctor, not until the day she could not get out of bed and dress herself. She died 3 months later.

I know that she never wanted to be sucked into the medical world of surgery/chemo/radio, constant appointments and limitations. She ran that care centre single handed until she could not get up, then even from hospital she was dominating every move and decision.

Many people were shocked. I kept thinking, well you know what, she did it on her terms - she kept doing what she wanted til the cancer stopped her, not until the medical system took over.

I don't know about your mum, but maybe she knew in her heart she was very ill but did not want to do anything about it. Her body, her disease. What if she was diagnosed earlier and she had surgery/chemo/radio and was sick as a dog, bombed out on drugs for a long time and then still died at the same time?

Another very close friend of mine lost her brother to cancer recently. He did not want treatment but his family did. So he spent many long months being so ill and in hospital having so many treatments. He finally said I can't do any more and they were so upset about it. But it was not working, and he spent so long in misery. I was able to help my friend with acceptance and she gave him much comfort in those last couple of months as he moved to his decision and let go.

You did not let your mother down and cause her to die. You did not. Cancer got her, and she made choices that were her right to make.

So many hugs for you, this is the worst thing to face, but I for one am holding your hand for what it's worth xxxx
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Old 07-14-2016, 02:18 AM #3 (permalink)
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Default Re: Warning...can't find a title but just rambling

Deb,
First, about your mom -- it is very common for late-stage cancers to be diagnosed. Sad, but common. Do not blame anything but cancer for that. You supported her when she needed you to so she could pass in peace.

Second, you never need to apologize here for sharing what ALS does to those we love. It is a fatal, progressive, unfair disease. What gets you through while being the best CALS you can be is the best thing, full stop.

Third, I am sure you have helped someone, maybe even yourself a little, by posting. So, thank you.

Best,
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Old 07-14-2016, 09:53 AM #4 (permalink)
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Default Re: Warning...can't find a title but just rambling

Thank you Tillie and Laurie for your heartfelt replies. Today is a new day and even though I woke with the same feeling of loss, I did just as I always do and went to work.

Tillie, I would never think I was bothering you. It's my own guilt and guilt is very familiar to me.

I know we all suffer losses with this B@#% of a disease but I can't figure out why we lose our relationship. I know Steve is present mentally and understands other things. Why can't he understand that I am also hurting and suffering losses?

It's like all compassion and love for our relationship is gone. It saddens and angers me. Will it make me stop loving him? I don't think so. I do believe when all is said and done, I will be so empty that I will never be the same.

Looking back I see that he was never a very open person with others and my fierce independence made it easy for him.

Like everyone else here I just need to accept that life has changed and that I will see the other side. Take one day at a time and know the clouds eventually part, the rain stops and a rainbow appears.
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Old 07-14-2016, 10:33 AM #5 (permalink)
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Default Re: Warning...can't find a title but just rambling

I don't know if my reply with be of help but it might....for someone.

I've been THE caregiver all my life. I took care of my dad when he fought a long, hard battle with COPD in the 80s. I took care of my bi-polar mother when she died of colon cancer in the 90s. I took care of the men in my life when they were out of work, depressed or just needed someone to step up. I bailed friends out of bad marriages, abusive relationships, and even jail. During the past six years I've helped take care of my 80 year old brother. I spent lots of money and time on him. He has a wife and two daughters but I was his "go-to" person. I'm not saying all this to brag but to give you an insight on how some "providers" might feel with this disease.

I find it very hard to be on the receiving end of anything. I grew up in a very dysfunctional family and always thought there was something I could do to fix it or something I lacked to cause it. This baggage is hard to get rid of....even with years of counseling.

Finally I'm getting to my point. Sometimes I find myself intentionally pushing people away to spare them or so they won't miss me or won't feel guilty when I have to go into a nursing home. I realize how terrible this sounds but I think many PALS carry around a tremendous amount of guilt about not being able to pull their weight, not being able to work, not being able to be the strong one, both physically and emotionally.

It is breaking my heart because I promised my brother I'd NEVER let him go into a nursing home. NEVER! He said he would rather die than do that and I told him he didn't have to worry. I thought I'd be there to be his advocate no matter what it cost me. I timed my retirement so I would be in good shape financially and physically to make good on my promise.

I know it isn't rational but I feel like, because I have this disease, I'm letting people down. I can only imagine the thoughts that go through lots of PALS heads as they become more and more helpless.

Please don't feel you let your mother down. You didn't. I'm sorry this disease is stealing your relationship and I'm equally sorry for your husband because I have no idea what is going through his mind.

I wish you could talk to a counselor. We have some sliding scale services here. We have a Christian church that has licensed mental health counselors who will take what you can pay. The congregation's donations support their salaries. They take all religions and don't push theirs. Is there anything like that in your area?
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Old 07-14-2016, 11:00 AM #6 (permalink)
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Default Re: Warning...can't find a title but just rambling

Scared - I can't add any words of wisdom to those that have already been expressed so well but I can say that yes, you have helped me with your postings. You were kind enough to take the time to write encouraging words of hope and advice when I needed just that. Thank you. I understand completely what you are saying about your husband and the isolation and loneliness. My husband and I have been married 40 years and he is becoming a stranger to me at times. He's kind and gentle as he always was but distant. He doesn't complain but then doesn't share anything either. He was always the strong, outgoing one in this partnership and has now become dependent and passive. And he keeps apologizing. That is so hard to hear. I can't seem to assure him enough that it isn't something he has done to bring this into our lives.
I didn't mean to make this about me. I really just wanted to thank you for being you and agree with the others that you deserve to use this space to share your concerns as well.
Wishing you a better day today when you go home. Or some muffling of the screams inside so you feel more peace. Hugs to you.
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Old 07-14-2016, 11:28 AM #7 (permalink)
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Default Re: Warning...can't find a title but just rambling

Wow, everything that you wrote is exactly how I feel. I feel as if I wrote that. Maybe it's good to know that others go through the same thing. Please know that you are strong. I feel the same way when people tell me that I'm so strong. You're strong and amazing and my heart goes out to you.
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Old 07-14-2016, 11:34 AM #8 (permalink)
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Default Re: Warning...can't find a title but just rambling

Scaredwifetx, your words have helped me to realize I am not the only one that feels this way. I could have written those words except that I am not as good with words, lol!

Cliff was my night in shining armour. He has taken care of me for 20 years. He has always been strong, kind, thoughtful, loving, dependable and most of all made me feel special.

I have had the conversation with my mother many times that I have already lost the man that he once was... He is distant, communicates with many friends with his phone more than he communicates with me. I haven't been able to understand it. He is still there but he doesn't let me in... I sit here writing this with tears streaming down my face. He is just in the next room, I can see him but he feels soooo far away.

I appreciate what Kim told us, maybe that is it? Maybe they pull away from us to spare us although I think it seems to make it harder. It breaks my heart to think he feels inadequate. He has been the strongest supporter of me financially and emotionally for the last 20 years. I just want to do the same for him...

Sorry that I have made this about me. Just wanted you to know that you have helped ME... Hugs to you friend! You are not alone.
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Old 07-14-2016, 11:37 AM #9 (permalink)
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Default Re: Warning...can't find a title but just rambling

Sunland sea, what a wonderful title. I so love both. You did not make the post about yourself as it also helped me. I know I need to see his side and understand that both of us have changed. I have weak moments and hate the daily toll this takes on the PAL and CAL. It's horrible for both and we have to remember that the monster doesn't define the relationship we had before it came into our world.

Kim, I know how wonderful and kind your soul is. I also understand how you feel not being the caregiver. I also took care of everyone in my childhood and life. As you told me, don't feel guilty. The disease can take so much but it can't take away the person we are in our soul.

I have thought a lot about my thread and am going to go home and do my best to assure my husband that he isn't a burden to me and that we can't fight the monster together.
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Old 07-14-2016, 11:42 AM #10 (permalink)
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Default Re: Warning...can't find a title but just rambling

Sooner wife, I feel a deep bond with you. Maybe it's our hometown and maybe it's our situation. I could feel the anguish in your words. Nothing can make this better but somehow I always feel like I am understood and cared for when posting here. Maybe someday soon we can meet and give each other a great big hug. Until then my thoughts are with you.
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Old 07-14-2016, 11:43 AM #11 (permalink)
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I am looking forward to that day scaredwifetx!
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Old 07-14-2016, 11:53 AM #12 (permalink)
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Default Re: Warning...can't find a title but just rambling

I'm feeling so very similarly with my mother.

We had one big fight during our recent cross-country drive where she said she would just kill herself so she didn't have to deal with my resentment. I told her that what I truly resent is the wedge that's been driven between us, how we no longer communicate what we really think and feel to each other.

She has always been the strong one and obviously was my caregiver until I reached adulthood. Even then, she was the first person I would call when I had any big issue, and she always loved falling back into the mom role whenever I came to visit. Now, she can't cook or clean, take the dog for a walk, drive (for the most part), get the mail, go grocery shopping, etc. etc. and it just destroys her. I have to do all of that stuff and I know that it is not up to her standards (in particular, the cleaning!). She also feels like it is such a burden on me - which is true, given that I work full time and have had a vibrantly active life in the city. But, I don't resent her for having to do it.

I DO resent that the moment I walk into a room she immediately asks me to do a few things for her. No questions about my day at work, no small talk about anything whatsoever, it's just what she needs at that moment and has been thinking about, but is unable to do. I so miss our conversations about everything - her stories, her advice. But, as you said, it's mostly just silence now.

I have two friends who have lost parents to terrible illness and they tell me to just try and think about her as she was before this happened. Even though we have to live in the now, just to remember that person as we always loved them before and keep moving forward.
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Old 07-14-2016, 12:37 PM #13 (permalink)
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Default Re: Warning...can't find a title but just rambling

Reading this thread is helpful in so many ways. I do know that when my husband apologizes for this situation it's not the disease as much as not being able to do as he once did - provide for his family and be the "go-to" for his extended family. He was the rock for his parents and siblings and now he is the one that needs support. To his children, he was the loving father (and successful executive) that provided a wonderful life and now he can't remember what happened a few months ago and has trouble returning a text message. He's smart enough to understand what he no longer knows and can't do. I know that he finds it frightening and I'm sure is a reason he is so quiet these days.

I think the ftd is making this significantly harder to deal with and I'm not sure how to help him, other than to love him daily and to now be the strong one in our marriage. I'm fortunate to have three grown children that are supportive as well. I just don't want to burden them any more than necessary. It's hard enough for them to deal with this. They are all hurting as they watch him grow weaker.

Kim, it is so helpful to hear your perspective but I'm sorry you are dealing with this. Your strength and determination is amazing. Thank you for sharing what helps us all to understand what our loved ones are going through.
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Old 07-14-2016, 02:22 PM #14 (permalink)
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I still remember quite vividly the day, the week, the month that ScaredWifeTX joined us. Her story bothered me a lot more than most, because no one should have to go through so much pain and fear. The whole world was crashing in on her, much more than most, it seemed. Since then, she's become an important contributor and a source of strength for others. I never said this before, but ScaredWifeTX has impressed me with her ability to adapt and overcome. I'm very proud of her.
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Old 07-14-2016, 03:17 PM #15 (permalink)
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Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: Warning...can't find a title but just rambling

Oh Deb, is there any more heartfelt title than "I can't find one?"

Never, never appologize. Not to us. My heart breaks for you--for all of us, but especially for you today. Losing the person we love while he or she is still with us has to be one of the greatest evils of this disease. Who knows whether it is our PALS attempt to shield us or changes to their brain brought on by the monster that haunts us all. Maybe it doesn't matter. It's cruel.

Much love to you. I wish I could offer more, but maybe that's enough.

Becky
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scaredwifetx (07-17-2016)
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age, breathing, brother, death, eating, heart, money, sleeping pills, work


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