Denial vs confusion

[gooseberry]

So last week at the va, steve told many different providers different things. For example, when asked about his ability to eat regular food, coughing, choking etc he claimed no issues to many issues. They kept asking him because he is having issues on their observations.

When asked how he felt he was doing he said fine...no changes. In the meantime company here in the last couple of weeks were shocked at mobility, breathing, and grasping decline. Should I explicitly enlighten him or let him be?

 

[Nuts]

Isn't it miserable, now knowing if they are in denial or truely incapable of recognizing changes? I wonder if this may be a question for our PALS.

It's good that the staff had a chance to observe and so know what's going on. Hopefully they recommended things with these progressions in mind.

I hope someone has some good advice here--I'd love to read it.

becky

 

[Nikki J]

My opinion. Don't tell him. What will it accomplish? I would not want to be told. If denial it will hurt to break it. If cognitive it will hurt and confuse

 

[gooseberry]

I only ask because he thinks he can fly out west this summer and if his rate of decline continues they will not let him fly.

 

[bigmark1954]

I don't know if there is a profound answer to this phenomenon. Steve is more advanced in his progression than am I. I do think there is a dynamic of giving up incrementally.

We have such a hopeless battle, but we fight it until we start giving up. It becomes very liberating to fight against all odds, but we know there is no hope.

Maybe Steve is just tired of having the same conversation with his clinic team, he knows that ultimately they can't offer anything but making him more comfortable. He has heard it all before and is weary of whining about the same old issues.

We have so many obstacles to exist with. Losing our dignity, existing with this disease as it ravages our bodies and minds, one piece at a time. Then there is always the medication fog we exist with.

Attitude is also our nemesis, we get weary of fighting....and just simply fade away.
It SUCKS, we all go through the same things.

My advice is simply to establish communication with his clinic team thru email or phone to discuss Steve's issues. I wouldn't do it with him present, he is withdrawing from the process.

 

[scaredwifetx]

Thanks for a great perspective bigmark1954. My Steve is doing the same exact thing and denies any changes since diagnosis. He has had choking, chewing issues, body has completely changed and he is losing mobility in the legs and hands. He has clinic this Friday and know he will tell them what he did last time which is nothing is going on.

I guess I will communicate with the clinic team and I am sure they know what is going on. Steve shuts me off the minute I try to discuss anything about his problems or the disease.

 

[tripete]

I, and I think most of us, are fully aware of the changes that are happening to us (FTD may be the exception here). The problem is how others treat us. They act as though we shouldn't be doing this or that or try to limit us from doing the things we want to do. So, as Mark said there is nothing they can do for us anyway, so why tell them and hear all the lectures. I want to do all I can while I can, even if it hurts me in the long run, its my choice.

I get angry whenever I am asked about depression, or about walking or holding things - because I know the next thing is to be told to take naps, use the BiPap more or take more mind melting medications. I would rather just not talk to them about it.

Having said all of that I appreciate it when my wife notices and tries to do the small things that relive the pain. A massage, hug, a listening ear when I want to talk, etc. Those are the things that make a difference, not being told what I cant do.

 

[bigmark1954]

Pete....good to hear sumpin outa you. You haven't been playing the forum game lately

 

[gooseberry]

Its not, for me as a cals at least, wanting to make choices for steve. I just want to make sure we arent spending money unneccesarily(he purchased the plane tix without me knowing).

I agree with you all about making your own choices and doing all you can. As a cals it is very difficult to watch.

Steve has really resisted home health. I sat down and said I can either provide hygiene needs for you and worry you fall when I am not here or we can have an aid help with some things so we can do things together. That changed his mind about the aid.

His mind has also been in overdrive lately. He has days where he talks to no one.

It all sounds like what you are describing. I just want the things for him so he is comfortable

 

[tripete]

Steph, I really appreciate your desire to make things more comfortable, but it is just not possible. Mentally and physically I will never be comfortable again. I would assume this is the same for Steve. Our lives are ending and those we love - our wives and kids - we will never see again. We will not be able to help them, to see them grow, to be a part of their lives. Our hope and purpose is gone. Everyday is a reminder of this, everyday is a struggle to fight against the impossible.

I appreciate Marks comments about fighting and understand them better now then I did in post a year ago. We fight not to beat this nightmare but to try and make things better for those we love. Giving up would mean giving into the despair that is always there and letting it win, becoming a point of depression for our loved ones instead of a point of encouragement.

I choose not to use any devices, except my chair for long trips and bipap at night. I could use them more as the clinic constantly tells me, but to do so would prolong things and I would eventually not be able to take care of myself. I continue to hope that my breathing will give out before my arms, hands and legs. This is not me giving up but consistent with my desire to make things as easy as possible on my wife. I love her and my boys and I know they will miss me when I am gone, yet while I am here I do not want to cause them extra work but try and help them.

I am certain that Steve feels the same.

 

[Atsugi]

Its not, for me as a cals at least, wanting to make choices for steve. ...I just want the things for him so he is comfortable

My usual advice is to keep the PALS happy with whatever they want, without hesitation, even lying to him if that makes him happier. But there is another major consideration: you. In the end, the survivor will be the only one that has to continue on.

In the meantime, your relationship is paramount. You don't want to alienate each other at this point in life.

So there are three number one priorities. It's a tough position you're in. Sorry, but that's all I've got. Feeling for you.

 

[gooseberry]

We are in a struggle at our house. Steve knows but doesnt acknowledge the decline(in my opinion). Julien documents it daily. In my own way I am incredibly torn. I can not say that things arent difficult and stressful. But I dont want the alternative. Julien tells me sometimes you just have to let people be at peace.

Steve is fighting so hard to stay with us and have a decent quality of life. It is all so hard, for pals and cals.

My problem is I received information at his va assessment that he doesnt have.

 

[affected]

It's certainly a very fine line to walk gooseberry.

What I've gained most so far out of this important thread is that, once again, there are no definitive right or wrong answers. The PALS have given some important insight of their own feelings and responses to the disease. These may have some bearing on your Steve and what is going on.

I think firstly for you, it hinges on the kind of relationship you had before ALS. That will influence how you approach things with him for yourself.

Secondly, I personally think Julien has some deep insight for one so young. He is being hyper-vigilent, and yet sees a need for respecting some boundaries he perceives. What a treasure he is!

I am just guessing, but if you received information he doesn't have, then maybe it has to be weighed, by you, on the lines of - what are Steve's ultimate wishes, against what this information you have means. (I'm not asking you to tell us, but to think this way) If it means you know things about how fast progression is or something about prognosis and it won't help Steve live what he has with quality, maybe it is best just keeping to yourself, or sharing with someone you can trust just to talk about it.

If it is to do with something that could improve his quality, maybe you can find a way to discuss it with him from a quality of life perspective.

We have had some threads at times about 'what is quality of life anyway' and this is another thing that differs for individual PALS, and also may differ for the PALS and CALS in a relationship.

I feel like I could go around in circles, but I do feel strongly about this 'no right or wrong answers or strategies' as something that fits everyone. The sharing of so many views here highlights that, and gives extra perspective as you work out your own situation.

In the end, does it matter if he is in denial or confused? Either could be as difficult to deal with. In denial would mean he does not want to discuss these things, it probably overwhelms him. Confusion could mean he won't understand if you try to discuss at length. Damned rocks and hard places.

Lastly, maybe it's worth weighing up from the view of - how will you feel afterwards. If you can find that place of acceptance of what this disease is doing and will do, and work on what you can do something about, and allow Steve as much control as possible, you will always know afterwards that you did these things out of love. This is regardless of what the actual details of each part of each situation are.

I really appreciate the difference in the tone of this thread here with both PALS and CALS being in the discussion, compared to a CALS only group. It has enormously broadened the horizons of my thinking!

 

[scaredwifetx]

I agree Tilllie. This tread has done wonders at helping me to understand what happens to CALS and PALS and to know it's not just Steve and I struggling with this issue. It has given me perspective on the PALS views and the CALS views. ONE THING is very apparent, the CALS are just wanting to do their very best to take care of their PALS and PALS are doing their best to take care of themselves taking burden off us. I don't think there is another way here.

Steve and I head to clinic Friday and he is in complete denial about his progression and I have to make big choices. I now know after reading this thread, to let Steve handle their questions and I will email them all afterwards with any questions or concerns I have . It's just not worth it to see the look on his face when we disscuss anything to do with this disease. He does't want to think about what is in store for him and I worry so much about what is ahead. ALS is an ugly monster and like it's difference from person to person, so is how we are handling it.

 

[lgelb]

Steph,
Is there any way to exchange the summer tickets for earlier ones, like during spring break? Is it really that he couldn't fly by then or he wouldn't want to? I've seen pretty sick people on the plane, with the right paperwork. Either way, have you had that talk, not around progression in general, but this specific trip and its logistics?

As for your original question, I wouldn't rush to tell Steve about friend/family impressions, as he probably did see them in their eyes. But if the clinic gave you any info that you think knowing would change how he spends his time, I would offer to share it, saying exactly that as why, and follow his wishes as to whether you do. If it wouldn't change his life, I wouldn't.

Possibly, once shared, you would need to continue sharing it periodically for it to sink in, and there is the periodic offer if he says no. There is also the indirect approach of sharing it without sharing it, as in "The clinic shared news that makes me sad, but I want us to be as happy together as we can so we don't have to talk about it if you don't want to, but we should probably [fill in blank of timely decision/discussion/action]."

I think deep down he knows, but if it would help him find peace to face it more directly, from everything you know about him, then I would do that for and with him. Larry and I knew he would know when it was time and would tell me, and we stopped clinic long before, so I don't have direct experience in what you face.

Best,
Laurie