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Lkaibel

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May 9, 2016
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1,529
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Lost a loved one
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06/2016
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MN
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Minneapolis
Yet, what choice do I actually have.

Brian was diagnosed 6 months ago. He has a weaker left hand and has progressed to using a cane, mostly to to strength and balance issues with his left leg.

Lately, I just can't stand it. I wound up crying in my bosses office just mentioning that my husband has a a terminal illness. I am developing odd wandering anxieties, including wondering what would happen if I were dying now or died now or even just got incapacitated in any way and couldn't help him. What would happen to our animals, I wonder? I need to make backup plans for them for if something happened to me too. What if my work gets sick of me? I am not who I was before this happened? MY mind just goes on sometimes.

I don't see my friends much because I hate to miss any time with him. I get irritable with him on occasion when I should not, particularly now. I feel like I was doing really well for a while and now I am doing poorly, not coping well, not keeping a positive attitude.

I am so MAD. I mean, here we were living this great life and then THIS? Yet I know, people have bigger hits, greater loses, we are not the only ones. I just can't get past the anger sometimes.

Christmas sucked. I got sick. I was glad to spend time along with Brian, that was nice. I had to postpone dinner though with my mom over because I could not make it or eat it. We did it today. I wondered if this was the last one.

I wish he would stop bringing up the end. I am tired of that conversation. I understand, I get it, this is progressive and terminal and he knows what he wants to do and at roughly what point. I respect it. I just wish we did not discuss it at least once a week. Yet who am I to tell him to stop discussing it? I hate how we end up in that conversation Every Time at clinic, but at least clinic is not for three months again.

They mentioned a DNR/DNI at clinic last week. I hated that they did that when he is doing reasonably well. I know they "wanted us to know it's an option" but WOW we are not there yet.

I know the things that I need to do. Calm estate planning for MY will, not just his. Calming down in general. Blah, blah, blah. Yet in all these "needs to do" that I so well understand, what I can't seem to do is make peace with this. I hurt, hurt, hurt. Lately I hurt so bad I had a moment waking up that I wished I could just sleep another 8 hours because sometimes being awake hurts.

I am venting, I know that the only answer is getting a grip. I just need to find the handle.
 
Lenore,

There's no P/CALS here who hasn't wished to know less and think less about progression and the end of life. Denial is a very healthy pursuit --as is chocolate, in limited doses. The problem in spending days underneath the sand, of course, is that we'd prematurely end the very living whose loss you (and all of us) mourn.

Finishing the paperwork, distasteful though it may be, is one way to spend less time for now in the EOL conversation and more in that life.

Clinics talk about advance planning because it's one of the few helpful moves they can advise. They can't fix ALS, nor really alleviate the pain (I mean that in every sense, of course), so they do what they're trained to do for terminal illness. Of course, ALS is unlike every other terminal illness, but you can't really count all the ways that it is different unless you've been there.

Some people here use drugs and/or counseling to get past the level of depression (that includes uncontrollable rumination on what-ifs) that keeps them from claiming that life while it's still there to be claimed. If you need that kind of help, get it -- so much worse not to.

Best,
Laurie
 
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Actually, Lenore, it sounds like you are on the right road. It is really very hard, and some people never even come to the understanding that you have: there's a lot to do.

I coped by doing a lot. I researched and planned for as much as I could. I made a plan for what needs to happen during the disease, during the final phase, after the end, and how was I to lead our family to recovery afterward. I spent a lot of time doing things for my PALS that didn't have anything to do with disease. It was my deliberate plan to take her to the best movies, the best restaurants, and to coordinate bringing in the relatives. Arranging for her to go to the restroom was a chore in itself, and important.

Importantly, I also had medication. Your doctor might want to adjust your meds to give you the best emotional state you can have.
 
Lenore, your post was as if I wrote it myself. We got our Dx in April so I think the two of us are probably dealing with very similar emotions. My PALS does not talk about planning ahead, I bring it up about once a week and he just kinda waves it off as if we have lots of time. My concern is what if his FTD progresses to the point he is unable to do the paperwork.
I too get bogged down in the "What ifs",I am terrified of losing him, and then worry what if something happens that I can't care for him. Like I said your post sounded a lot like my emotional roller coaster, I too am angry at......what?, Who? I don't know but it is there all the same.
I too seem to be more easily irritated at him, especially when he doesn't understand what I am saying to him, or refuses to keep himself safe.
I also think how others have been dealing with it so much longer than we have, but the enormity of it seems so overwhelming, and others seem to be handling it so much better than I am.
All this to say, You are not alone. If you want to vent or whatever I'm willing to be here for you.
Kay
 
It's hard and it sucks. I'm a planner too and that helps me somewhat- knowing what's coming and trying to stay prepared for it. Truthfully, although I know what is coming ultimately, and remind myself of it daily because I never want it to be a shock, I don't let myself think too much about the in between bad that is coming. I cry about it pretty rarely these days anymore because I don't want to cry around the kids; they are still too little to be told or understand. Some of our friends know and many do not, and I find I am more comfortable with the people who don't because I can pretend that things are "normal" for us. I went on medication briefly but it made my hair fall out and I went off cold turkey. It definitely took away the anxiety though, so that might be a good option
 
Hugs of understanding, Lenore. You are not alone. I started a rant last night and ended up deleting it. I just could not handle ranting here on Christmas day. Like you, I had months where I hurt every waking moment. It's a little more bearable now... but not a single day goes by... that I do not think of this horrible disease.

Like you, I imagine what would happen if something happened to me. I have also cried at work, miss my friends, miss my life, am angry a lot of the time and I am so very tired of this disease. I didn't put up Christmas lights or decorations for the first time ever, spent the first Christmas away from Steve and drove five hours by myself on Christmas day.

I totally relate... to not being the person you used to be. How could you? Everything has changed and we are reminded daily that the future... is going to be very tough. We try to act strong around everyone but yet are falling apart inside. I have things to do to prepare for my future with planning my estate and will... but I cannot bring myself to doing it. I am so lousy at anything outside of this @@#$ disease. I also worry about my career. I am so not in the game right now. I just float along from day to day.

Don't worry Lenore, you will get a grip. You have no choice. Voicing your anger and sadness will help a little. The screaming in your head has to find release. As you know, we all have our moments. I also recommend talking with your doctor. I know its hard but sometimes we just need a little help.

I wish I could offer more advice, say something to help or choose better words. I just can't! Being right smack in the middle of this nightmare is hard. I have never felt so weak. I hate that I am not handling this all with my normal strength and conviction. I know you feel the same way. I am so glad you shared. It helped me to realize that I am not alone and neither are you.

Big hugs. By the way, I think you have been amazingly positive.
 
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For all the fact people would tell me how amazingly I was doing, no one sees how it really is for us as a CALS.

It's not a measurement of where progression is at either, it's just how this disease eats away at so many parts of everything.

I truly found that peer support online, counselling and antidepressants were critical for me. Never feel like you should somehow just be handling all of this as though it should be a snap.

I am sure that your ranting here on this thread has already actually helped others because we can identify - we get it. I hope it has relieved just a little pressure for you.

I do feel the more formal planning you can do, especially around DNR/DNI now may help your husband relax a little, and may be so much more important than you want it to be. Anything can happen at any point with this disease. This is part of the cause of the huge stress for CALS who need to do anticipatory planning, and yet can find themselves in an endless loop of what-ifs.

Sending you a virtual hug, a great big long one in fact. I still can't reconcile everything in some ways myself!
 
I really find these kind of posts so helpful to me. Just knowing that I am not alone in having these same feelings is so helpful. I feel the anger and sadness that things have changed so much for us and it seems to have deepened over the holiday season. I am angry that I could not be there for my parents when they were dying because they lived so far away.

My husband, Frank, is more like your husband, Kay. He will not discuss anything about the future such as whether he wants to go on a ventilator or funeral plans. Lenore, I think this is just as frustrating as talking too much about it.

I also am incredibly anxious that something will happen to me and I will be unable to care for Frank. I am his sole caregiver and I pray every day that I stay well so I can care for him.

Don't ever feel like you should not say what you are feeling, Lenore ( or any CALS). You can be sure that you will be helping someone who reads your posts.

Sharon
 
Thanks so much everyone.

Kay, you gave me something to be genuinely grateful for with Brian right off (not just "wow he's not dead yet" grateful): no FTD to date, not a hint of it. The Doctor reassured us that in the vast majority of cases FTD either comes alongside of just before ALS with symptoms and he considers Brian pretty much out of the woods for a significant rish of developing it. This was very important for us to consider right off because Brian's dad has Althiemers, and while no conclusive link has emerged, a link seems very possible. Those of you - like Tillie and Kay who have dealt with FTD on top of the obvious devastation of ALS really have gotten an enormous extra load.

Al that for saying I am on the right track, shows me some parts of my brain still work! Laurie you are practical as ever and right about planning. Brian is not ready to sign off on a DNR/DNI because as he said with the mobility he has going on now he still wants to be here, but that time will come. Thanks also for saying that ALS is unlike any other terminal disease. I said to someone recently that I thought I could cope more easily with Brian having stage 4 cancer than with this, and I was probably totally wrong. The person I was speaking with was a CALS, what I did not know was his first wife died of cancer and he said "no, you are totally right, and I can't explain just why either". Then he proceeded to tell me about losing his 29 year old wife to a bone cancer and how somehow this was much, much harder even with plenty of resources to give her in home, 24/7 care he keeps an arms length away from at her request.

Depression, medication issues. Well I have an open mind. I do take a beta blocker which has the effect of suppressing fight or flight anxiety. I may need more than that. I think the holidays set me off bad. Coming into my living room each day all month without the enormous display of lights and tree Brian did each year because he is doing alright, but was just not up to that understandably. Thinking this year VS. last year, of course. How can I not?

Then there was my friend Lynn. How likely is it we would even know each other? Her husband was Dx'd three years ago. He is in a nursing home now, he just went into one this month. After two months of thinking he was dying any day he pulled through but she could no longer care for him at home after 2.5 years of doing so. She is doing really well with it, but here we are on different ends of this same thing and it's actually I think a little hard on BOTH of us to see.

Through all this though, the constant of course is that Brian simply has ALS. Slower moving than many. Contracted later in life at least and a great life it's been. Another thing I am genuinely grateful for is that you all know, really know how bad it still sucks. I appreciate that, I really do even if I am sorry you all had to find out.
 
Great thread, Lenore!

I think we all feel the same way. So much anger at what we are losing.

I can't imagine what it is going to be like when my PALS is no longer with me. I imagine myself not wanting to get out of bed... How will I pick myself up and make myself go to work?

I had so much anxiety before the living will paperwork was completed. It was making me to crazy to not know what he wanted. Although I knew what I thought he would want, I wanted him to make those decisions. I wanted his family to know they were his decisions, not mine.

I too started a antidepressant which has taken the edge off. I still don't want to get out of bed in the morning but I have less days that I cry.

HUGS to all the CALS out there. We will never be the same, we just have to keep putting one foot in front of the other.
 
I try to think on my future without him, it helps and hurts all at once if that makes any sense at all. I think I am better off that Brian wants to talk. That must be tough Kay, the "we have time" thing. As Tillie said, it can all change in an instant. Sooner, you will find that strength. There is life for both of us after this. It's just one long hard journey to get there.

Another thing I am realizing adds to my distress at times is this weirdness of seeing "old Brian" alongside ALS Brian at times. He can still crawl on the floor with a vacuum attachment but most frequently walks with a cane and out and about with a cane and orthodics. Dr. said the reason is the weakness is almost 90% in the leg below the knee. The rest of him tests above average strength, except for his left hand which still tests at about 80% of normal strength. So he can do some of the things he has always done and then I see him stumble suddenly, reminding us both that it is there.

I know this is early stage and slow progression stuff. Plenty of people here would give anything to see a spouse still able to crawl on the floor with a vacuum.
 
Thanks Lenore. Your post enabled me to get my feelings out. I needed to write them but was to afraid to during the holidays.

Steve does not want to talk about the future and furthermore cant handle it. Any talk like that and he gets very sad. We did all his paperwork within two weeks of diagnosis and put it behind us.

I have been dealing with such sadness and anger the past few days. Nothing is the same. Christmas was a very big reminder of the road that lies ahead. To top it off, Steve is acting so different. Sharing emotions with his loved ones and has not been feeling himself. He is now showing signs of breathing difficulty, not wanting to take showers, having trouble getting into his chair and his hands are worse.

I know the road ahead and I am a planner and worrier. I have always been this way. I hate knowing what is ahead but not knowing the when or how. It's so sad to know what the future brings but at the same time we can't see our own future.

I feel like a big baby whining and hate the weakness I have displayed since his diagnosis. I hate that some days are so hard for me to live and love in the moment. I hate that I lost my mother during all of this and in my home. I hate that I feel trapped at times and I really hate that I cannot be comforting to CALS and PALS here.

Over a year in... and I am still not dealing with this disease... with the strength and courage I once had. Today will be like every other day and I will do what is needed... while putting a smile on my face. I am so very thankful for my friends here.
 
This thread mirrors my feelings so well. To have a place where the rants are understood. When one of us rants, the rest read and feel connected.
My guilt is a bit different. With PLS the terminal part does not loom, but the disease progresses nevertheless. Speech, spasticity, and swallowing etc, are now trapping M. The fourth time in the night when I have to use all my force to bend his knees and I snap. Intellectually I know better but the heart can only take so much. I wonder what years more of this will do to my psyche and his quality of life, our finances and my needs when I am not as able as I am now. For true If I begin to catastrophe it snowballs out of control and I shutdown. Over the years I am doing better with the living in the now. It is cliche but true. Reading about others frustrations makes me feel better and not so alone.
This holiday season has been about family. We have a wonderful woman who comes 3 nights a week so that I can 3 nights of sleep. It is only week 2 but it has been wonderful. The lift I looked at from Craig's list turned out to be wonderful, in great shape, and she took 200 dollars more off the price. Yeah. So happy holidays and keep on ranting and finding the glimmers of good in such bad situations.
Anna
 

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Deb, you are dealing with it because you get up every day and do what needs to be done. That's the best and most important thing we can do.

Not knowing what is going to happen. Yup, ALS is strong enough that it forced me to say right out that I am a control freak. Then, this thing comes and yells at me, for ALS only ever yells, that I will accept life on life's term. We can plan like crazy, but for every eventuality? Not so much. I went to a CALs support group for the first time recently. Just CALS, no PALS. It was enlightening and depressing all at once for sure. It reminded me we have no clue what will happen, as this site often does. That drives me nuts too. Gee, will we be "average" or will we be like the couple that was going along great when all of a sudden the PALS lungs failed, with every part of his body still moving and voice and eating ability intact (he was limb onset). Or, on the other end could we be like the lucky pair where the CALS had a "typical" progression that arrested 7 years ago. He finally got bored and went back to work, wheelchair and all. No clue if ALS will fire up again or not. I guess we have to assume th average, but what is "average" in this mess.

Yup, even worrying about that creates madness. Life on life's terms.
 
The reason that ALS is so much harder than stage 4 cancer is the unpredictability and hopelessness: at least with cancer we have options for treatment or sometimes cures, we have something we can try. There's hope for remission. If it's at an incurable stage, at least you know how it progresses, they can see where cancer cells are, manage pain to some extent. ALS is such a wild card that it throws everyone. And it's relentless.
 
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