What do you say when you can't say "It's going to be okay,"?

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Avocado

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I have lingered a lot on these pages the past few months, but not really participated. Thank you to all of you for sharing your stories, insights and experiences. It’s been so helpful to me so often, and comforting to know there is such a supportive community of people here who actually know what its like.

My PALS was diagnosed about a year ago. He is in an electric wheelchair now, hoisting for all transfers, completely dependent. He has coped so well with all the losses, keeping a stiff upper lip, still laughing and enjoying those things he can. He’s been pretty amazing.

But recently, his remaining hand control is starting to dwindle, and he is now having trouble controlling his electric wheelchair and the remote control for the TV - possibly the last two things he could still do independently. We are looking at alternative technologies - head controls for the chair, and eye gaze software for infrared tv controls and communication and the like, but that in itself just seems to get him down.

Worse though, is that his voice is also starting to fail him. For all the things he has lost, this is the loss that has hit him hardest of all. The idea of being in his useless body and not even able to have a conversation is really getting him down. Until recently, he enjoyed a glass of wine in the evenings, but he’s gone off that too. Instead of sitting in the evenings, chatting and having a drink together, he now just wants me to read to him. He has always been a wine lover, but says it doesn't taste the same anymore.

I think he doesn’t have the energy to talk, and it frustrates him that I sometimes have a really hard time making out what he is trying to say. He jokes less, and laughs less. I can’t blame him for that, I just wish I could say or do something to make him feel better. But what do you say to someone when there really isn’t anything that you can be sure of except that things are going to get worse? I do absolutely everything for him, and yet there is nothing I can do, and on top of being overwhelmed and exhausted, I just feel so helpless.

I needed a little rant. Thanks for listening. -Tara
 
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Atsugi

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I don't know the right answer, but I have some thoughts.

People need hope. Since PALS can't reasonably hope for improvement, perhaps they can hope that things get better for their family, kids have good futures, etc.

I have noticed that, toward the end, most people turn inward, thinking about themselves and their own situation. I that sense they become more self-concerned and not really concerned at all about other people, even their family. If this is the case, talk to him about his legacy, the good things he's done.

No one should be alone in these times. so Just your being there is really important.

As to your feeling helpless: We all want to "do something" to help the people we care about, so I really understand this problem. But my perspective might be different. When there is nothing you can do for the PALS, there is still plenty you can do for the family and yourself.

ALS will kill one person and sometimes it will destroy a whole family. Focus on your own future.

PSS: I think I have some home control equipment left over. Don't have the computer and eyegaze hardware, though.
 

lgelb

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Tara,

There comes a time in ALS when, sadly, the world becomes small for a PALS. Do you guys still go out, to a movie, museum, concert, park or other places where he doesn't have to talk much? That can help feed his soul. Do you have people over that he enjoys listening to? And, there is nothing wrong with passively consuming audiobooks, music, streaming courses, virtual tours, whatever is fulfilling for him.

You can't invent reasons for him not to feel depressed, but you can support his finding them for himself, from the logistical and encouragement sides of things.

Best,
Laurie
 

Avocado

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Atsugi, thank you so much for your thoughtful and insightful reply. I appreciate you sharing your perspective with me, and you make some good suggestions. I sometimes think about my future, after my PALS is gone, but I admit it makes me feel guilty to think about and try to plan for my own future when he can't do the same. I try to be as supportive as I can. I try to make him laugh. It just seems to get harder and harder for both of us. What a rotten disease.
 

Avocado

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Hi Laurie, thank you so much for your thoughts and great suggestions.. We try to get out, and have people around, but he gets so tired so easily these days, it is getting a lot harder. Mostly our outings are to go for lunches, but you are right, there are other things I could get him out for, just to get him out. We don't have family here so it's really just me and unfortunately by the time I do all the household stuff, and take care of him and the dogs, time is often short. He put in a home theatre with a nice big screen before he got sick, and it's been a real blessing because he now uses it a lot, and some of his friends like to come over and just watch movies with him, which is great. He loves online courses but can't manage the mouse anymore. We are looking for someone to come in and help him for a couple of hours a week with reading and computer stuff while I go off and do errands. If we can find the right person, I think it will be great for him. It's just so hard to watch the way his mood is sort of deteriorating now.
 

Nuts

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Tara, I just wrote a book about how we are in much the same place as you. then I realized my post became about me, and not you, and this is not the place for that.

Boy do I get it. I'm fortunate that my guy is focused on my future, so making sure I'm ok gives him purpose. Sometimes a bit too much :)

Get the eye gaze now so he can get used to it while he still has a little movement. Ours showed up yesterday. I am both excited about it opening my husband's world back up and dreading one more piece of equipment to manage and make space for. I think my dresser will be moving down the hall very soon...

Tell him you love him. That you will always love him. Tell him all the things you've loved about him that maybe you never mentioned before. I've been sharing things from the past that were special to me that he never gave a second thought to. Mike (Atsugi) makes a great point about his legacy. My guy is clearly afraid we will forget him, which amazes me. It pleases him to know the things that we will remember or that will remind us of him.

I'm so glad you decided to join in the conversation. I think we all lurked for awhile before chiming in--I know I did. I now disappear for long stretches (it's been four years), but this group has been my home and my life saver. Our journey would have been very different had it not been for the honesty and generosity of the people who post here.

Much love to you,
becky
 

Atsugi

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"...it makes me feel guilty to think about and try to plan for my own future when he can't do the same..."

I understand, probably most of us feel that way. But we all have to prepare for the future. What is that future going to be?

Suddenly, just now, you inspired a story to come to my mind:

Two beautiful souls are holding hands in the vast Forest of Possibilities. Anything can happen here. Like all the other beautiful souls, they are enjoying sniffing the flowers. They spend their day giggling, singing, dancing and making love. One of them is a beautiful green soul, the other a beautiful purple soul.

Then suddenly, a giant ugly monster leaps from the trees and attacks the green soul, gobbling it up. Pop! It's gone. As quickly as it came, the monster disappears back into the shadows. The purple soul is frightened, and is left alone in the same lush, green forest with all the other souls. The others have barely noticed. In fact, the other souls continue singing, dancing, and loving each other amidst the flowers.

Purple soul is sad. Purple sits down, alone on a rock. No one around really understands what Purple has been through. All the others continue sniffing flowers, giggling and laughing through life.

What can Purple do? Should Purple feel guilty? Should Purple continue sitting on the rock in that wonderful Forest of Possibilities?

<We each write our own ending to this story.>

As for me, I'm keeping the memory of my PALS alive in our children. I give little donations to causes she supported. I gave a tiny scholarship in her honor.

But I spent too long sitting. Sitting has taken a deadly toll on my body. I strongly caution against it.

A few of our CALS rejoined society fairly quickly, traveled far, and found new love. They seem to have done quite well. I recommend that.

The future is going to happen to you. Plan for it. Make a vision of your next life and make it happen before it's too late.
 

texastc

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I find it hard to chime in here...because I know exactly where you are. All gave good advice here...they gave it to me too.

The biggest thing I can say is...be there. Hold him. Let him know you love him. That will give you comfort later and it will give him comfort now. Live day to day. Make the little things big, and relish them.

Lastly...and this is hard...certain moments will arise that you will be able to convey to him that you WILL be okay after he leaves...and that it will stink, and be the most difficult thing you can imagine...but you will survive. He needs to know that. You don't need to have specific plans...there will be plenty of time for that later, but it is really important that he know you will poke out the other side mostly intact. If he is like my Tracy, and it sounds like he is...that knowledge allowed her to go on, not worrying about my well being. I think.

Be there...thats the most important thing.
 

Avocado

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Hi Becky, thanks so much for your response. I wouldn't wish all of this on anyone, but I have to say there is some comfort in knowing I'm not alone, that someone is in the same place and just gets it. I have some good friends here but there are a couple that I feel just particularly don't get it, and I find it hard to talk to them these days. My world feels like it is getting smaller.

My guy actually told me he rather this than being hit by a bus or being taking somehow suddenly, because he has been able to get things in order to leave things well for me. He doesn't really talk to me about what I am going do after, except he hopes that I will do a PhD. And occasionally he makes a weird comment, dark humor, about selling the stereo or getting someone to move in to our house with me. He makes little jokes about it here and there. I guess that is one way of coping with things. It's nice your guy is still so focused on you, too.

How is the eye gaze going? I will be very interested to hear how you are getting on with it! I think we have put the wheels in motion to get one for Neil, but unfortunately there seem to be lots of hoops to jump through. I believe there is funding that will cover it for him, so we are lucky in that respect, but I am afraid it will take a while, and I wish we had started on it sooner. Best of luck with it, and I hope it helps you both out!

Sometimes I get so caught up in getting everything done, and I get so tired and I long for just a rest but his requests and needs are just so endless. And I know during these times I don't tell him I love him enough. I forget I'm his wife and I feel like he is just a relentless list of demands. I don't want to feel that way and I try not to. But, it's good advice you give. And I do try to, and will take all of your suggestions on board. I hope I do those things anyways, but it's more important now than ever.

Love to you, too, Becky. Thank you so much!
 

Manhattanite

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Hi Avocado, one thing I told my PALS (besides "I love you" often), was "I will be by your side until the end." I couldn't offer him hope or a rosy picture, but at least I could give him comfort that he would be taken care of and that we would continue to be one unit.
 

Jrzygrl

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Sometimes I get so caught up in getting everything done, and I get so tired and I long for just a rest but his requests and needs are just so endless. And I know during these times I don't tell him I love him enough. I forget I'm his wife and I feel like he is just a relentless list of demands. I don't want to feel that way and I try not to. But, it's good advice you give. And I do try to, and will take all of your suggestions on board. I hope I do those things anyways, but it's more important now than ever.
I am feeling the same. You are not alone in your struggle. Hugs.
 

Narrowminded

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Avocado I haven’t yet had tha chance to welcome you. I too understand and get everything you are feeling. And yes, unfortunately your world will get smaller. That is one of tha sad things for many PALS and CALS is that friends fade away.

Now this forum here, it’s a slice of heaven on earth. I have been able to replace my live friends with so many wonderful people on here. They are my new circle of friends. We hope you’ll join us.

The eyegaze computer is wonderful. My husband has one, and it really opens their world. He uses it for watch Netflix, YouTube, email etc. Hoping you can get yours quickly.

Hugs to you,

Sue
 

Avocado

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Hi Atsugi,

Thank you so much for your story and I know that what you say is absolutely true. I'm sure it's easier said than done, but I don't intend to sit around in our 'after'. My PALS would never forgive me for that. I would like to think I will get up and go do something good. I left my career a few years ago to pursue a new path. To that end I was attending university when my husband was diagnosed. I got halfway through my Programme and then had to defer as my husband's condition worsened. I know he wants for me to finish though, and he hopes I will carry on and do a PhD. I can see my forest of possibilities taking me into academia, though I have to say it's really more of a vague idea than a plan at this point. I love learning, and I was enjoying my studies, so I think it will be a good distraction when the time comes. Among the countless cruelties of this disease, of course, is just all the unknowns. It could be one year, or three or five..... His neurologist dodges that question everytime he asks her. There is no precedent or standard progression, everyone says. I feel like it would be somehow a bit easier to that no about the future if one could have some sort of expectation of when anything will happen. How can you plan for the future when you' ve no idea when the current chapter will end?
 

Avocado

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Hi Texastc,

Thanks for chiming in with your reply and for your advice. I think it's very good advice and there certainly seems to be a concensus here about the things that are most important. I try to make him laugh, I make him as much ice cream as he wants, and I tell him I love him. I think you put it very well in saying these things will comfort him now and me later. That really resonates with me somehow.

I guess there really isn't anyway to take away the pain and anger - all I can do is help him do the things he still wants and needs to do, and ensure that things are taken care of the way he wants. I don't think he is actually worried about me. He knows I am strong and as much as it sucks that somehow or other I will be okay. And he knows I will miss him and that I will be here- but you are right it probably helps to keep telling him that too.
 

Avocado

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Hi Manhattanite, thank you for your input. Oddly enough, we had a meeting with our community nurse today to have a discussion about advance directives, ahead of his next appointment with the neuro. He told me he wants to be at home in the end, rather than at the hospital, and he asked me if I was okay with that. I told him I was okay with whatever he wanted, and he seemed very relieved and to take great comfort in having that decided. I think a big part of it is knowing that I will be with him the whole time if he is at home. I guess it's good to talk about these things, even though it's hard.
 
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