so hard to love and live

[affected]

Hi everyone
I've been reading the forum for a little while and been reluctant to say anything yet as the whole situation is so turbulent and I know you all understand this.
My PAL is a member of the forum tho has not posted much only an introduction really a while back but I'm keen to maintain some privacy for myself so that I can say anything about how things are for me, and this has been my main reason for reading only but not contributing. I am concerned that my PAL may read something I post and take offence, as the situation is one where I am told constantly that I must share how I feel, but if I do, I receive an intensely angry reaction, even to the point of comments such as "you don't even know what vulnerable is" or "oh you are such a martyr!:. So I am happy if anyone wants to post privately so that I can feel I can say how I am really doing without disclosing details that would inflame the situation here.

My PAL was recently diagnosed and has bulbar and upper limb effects that are distressing to the both of us and seem very rapid, though reading other stories we know that they are not as rapidly progressing as some people experience.

We finally got a diagnosis after a long process that was distressing being in limbo whilst suspecting that ALS would be the diagnosis but hoping that something less serious would be found.

I know that in the end I have to carry this myself, but I just have to say something because even though I have some great support through family and friends, everyone is 'connected' to the situation and I am hoping to start some counselling soon to have that disconnected support, but tonight I am, well, more than a little distraught.

The worst is yet to come, my PAL is still quite physically able as he is not working and so can do things at a slow pace, but his swallow reflex is frightening as it can't deteriorate much further and he is going to need a PEG very soon, and his hands/arms are deteriorating so we know that sometime in the future, and maybe not too far in the future he is heading towards needing a high level of care/assistance.

We are facing some life changing decisions to put ourselves in a position to cope with the effects of the disease now and what the next 6 -12 months will hold for us, and this is stressful, but it's the reactions from my PAL that is the most distressful. I find that I spend so much energy trying to 'do' everything right and we can have weeks where our relationship is good because i manage that, but then like today, one 'slip' by me and all hell breaks loose and he accuses me of things that are just so far wrong, and any attempt then by me to explain the situation and how I am feeling ends with him yelling (which means he becomes totally incomprehensible which inflames things more) at me and I feel like I am totally failing at giving him the support he needs and deserves.

So what do I want here? I guess a way to privately communicate with someone/s, and a public way to talk about the day to day stuff if I can do that without inflaming my situation.

I have been so inspired by some posts I have read here, and also my distress and apprehension at what is yet to come by some posts, but I refuse to let that get on top of me, we take a day at a time and try to stay as positive as possible.

But you know, there are some days when I wonder how I can cope even another single day, and this is one of them. Hopefully tomorrow will be another better day and I will know again that I can do this.

 

[Annie's Phil]

I'm very sorry to hear about your distressing situation. No doubt that ALS causes enormous stress on everyone affected, both PALS, CALS, and family members. Since your PALS was only recently diagnosed it is unlikely that either of you have adjusted to your new reality and all of it's implications. It is and always will be incredibly stressful, but in time, if you both allow it, you will at least get used to it and hopefully be able to function together as PALS and CALS.

I'm sure there are many members here who will be glad to communicate privately with you. In order to be able to send private messages, however, you need to have 15 posts (I think that is still the required number. So if that's incorrect I hope somebody will correct me). Meanwhile, people can exchange posts via profile pages, but they are public.

Grace and peace to you.

 

[Ms. Pie]

Maybe you both need counceling. He needs to grieve but remain civil. Maybe you could get couples counceling?

 

[TGB1]

I'm sorry you are having a rough time of it. My situation is not the same because I care for my mom, not a spouse, but I'm sure we all deal with some of the same stuff. When you talked about the swallowing it really hit home with me, because before she was diagnosed (and no one knew what the hell was going on) my mom would call me in a panic and tell me that she couldn't swallow. Total stress for both of us. Get the peg! My mom got hers in January (diagnosis 12/2012) and it has relieved so much stress. All of the nutrition goes thru the tube and she can still eat pureed foods and her beloved nightly ice cream. If she starts to tell me she is having trouble I remind her that she doesn't have to take anything by mouth if she feels she can't, its all going thru the tube. Sounds so trite but hang in there. I also have some days where I can just cry all day but then I seem to get it out and pick myself up and start all over again. What choice is there? I can't abandon my mom.

 

[affected]

thank you so much for the kind replies, that was a tough night!
thanks for letting me know about the 15 post rule Annie's Phil, I will have to start posting a bit, but I won't just fill the place up with another 13 useless posts :shock: (see today is better I do have some sense of humour)

thanks also Ms Pie, I know that I need some counselling, at this point he says he doesn't, and he is not talking to me this morning yet so I just have to tread carefully ... couples counselling could be useful if the counsellor is really capable.

thanks also TBG1, there is a lot of cross over in the situation regardless of who your PAL is I'm sure. He is starting to consider the PEG and I support that totally. He actually manages his swallowing well a lot of the time, but we have had some really scary stuff happen with that too, so it's always something we are too well aware of.

Hang in there isn't trite, it's what I have to do, there is no choice, the disease is here and can't just make it go away, so I am hanging in ... even if some days my grip feels like it's by only one finger!

Really appreciate the replies again

 

[Barbie]

Hi affected. you guys are facing a lot individually and as a couple. don't beat your self up for having a hard time. he istoo, but you canonly control yourself and how you feel and react. If he won't go to counseling that DOESN'T MEAN you cant go. GO! you will get more out of it with out him I think. and he may change his mind and go with you later.

remember, you will have good days and bad so keep your chin uo and think about that song from Annie "tomorrow, tomorrow, I love ya, tomorrow..."

we are on your side and here for you!


B

 

[affected]

thanks Barbie, I think one of the things I can appreciate most about anything said here is that you are all either in the same situation, heading there or even further along, and yet taking the time to offer some words of support.
I am going to organise counselling, I've left a message with our coordinator and she will get back to me next week.

I have started having more good days than bad, or at least more better days, and when I'm working I feel the most normal, so I'm really grateful for that. I actually focus as much as possible on all the things I have to be grateful for, and am pretty positive most of the time.

He is very quiet today, barely talking to me, says he is fine, but he is not and not asking if I am ok.
With luck he will improve as the day goes on and things will soften a bit, but that doesn't really deal with the explosion that happened. My main thing with this is that I'm not game to try and talk about what happened and what was said as I fear that it will just go awry and become another explosion and set of nasty things being said to me... kind of a rock and a hard place

 

[Barbie]

I understand. I gave up trying to talk with my husband, as it doesn't accomplish the things it use to accomplish pre-ALS. I mean, we talk, but we can't solve our problems anymore. I know that ALS has affected his personality--he doesn't think so but me and my kids see it. it is little things, not FTD thank god, but just another layer of sadness to deal with.

I have heard that explosive anger is depression turned outward. I believe it. Poor guy--is he on anti depressants? they really helped my husband and me too. You should keep a log of when and what abnormal personality issues occur, and the Next time you see your ALS clinic send them a private email with the list in advance. tell them that you are concerned about depression and mild FTD. that will give them the heads up and you don't have to talk about it in front of him which could just upset him. They can talk about the issues, and observe him and make recommendations to him without him knowing that you sent the email. That has worked for others here, me included.

 

[affected]

thanks so much for that reply Barbie, all that you say makes sense.
It's harder for me to post over a weekend, but I'm really pleased to say that things did settle and we have had a far better few days.
To be honest, I think he is coping really well with the diagnosis and understanding of what is to come, and we usually have several weeks where we are doing as well if not better than expected, but then something happens and I think it all comes out in a rush.
He is not on anti-depressants, and I do think that he is not needing them at this point, he is better off coping with it all as he can.

But your post has really made me realise that I need to keep a close eye on him, and your suggestion of emailing the clinic in advance is just brilliant! These are really the kinds of really practical help that can come from a place like this - strategies. I will try to post a bit more later as I will have some work to do and so will have some privacy at my computer, but things are much more stable now and I'm coping well with that stability back ...

 

[affected]

we seem to have a few good days or maybe a week, then I'm guessing it just all kind of gets on top of him, and he gets angry and makes these decisions that almost seem like a way of lashing out.

yesterday he was getting frustrated at the continuing lack of abilities with his hands and admitted it was getting to him.
this morning he seemed a bit better and we were off first to see a new doctor that is far closer that the one we are seeing, and then to a day therapy unit for assessment for the beginning of some OT/PT

I could see anger slowly building in him during the doctor appointment, and we stopped for a coffee before heading over to the day unit. He got angry as it was too hard to try and talk over the noise in the cafe, and once in the car he started saying how no one really cares, no one can really help him and he doesn't want to see the speech pathologist anymore and if this day care centre is no good he will just get the lung functions done next week, get a script for Riluzole and tell everyone to eff off ... that he will know when he is in need of a hospital and until then no one can do anything anyway ...

I think that he is slowly heading to some depression, but if he cuts himself off from help it's going to be hard!

Then to top it off, Centrelink have decided in their wisdom that he is capable of 8 hours work per week and want him on an agreement - no wonder he gets so angry at everything!

 

[Pkmado]

Barbie
I just read your blog and was moved by your description of the change in marriage/relationship with our PALS. I found it comforting knowing this is most often the norm and not the exception.

 

[AlabamaGal]

I was "glad" to see some posts about the change in marital relationships too. Our marriage of almost 30 years is completely, 100 percent different than it has ever been. He is still the love of my life and I will take care of him as long as I am able to do so, but it is certainly no longer the husband/wife, partnership that we once had. ALS changed everything, especially in this last year. We don't really converse any longer. When I try to, he usually doesn't get it. There just isn't "real" conversation anymore. Sad, but true. And there are definitely cognitive issues; they could see it at clinic this last week. My daughter and I have known that for some time, but no one else really gets it. Hang in there caretakers. Hardest road ever. But, none of us would be on this part of this forum if we were trying our very best to help our partners and to survive this disease.

 

[affected]

so true about the relationship changes.

I so love him, but 'us' has fallen apart already - 'us' was the entity that rejoiced in planning and future, that laughed and loved all the time.

We have only just had our 2nd wedding anniversary, and the feeling of being ripped off still threatens to overwhelm me some days.

Now, we have to be careful about being too silly together, as laughing can cause him to aspirate saliva and it is so incredibly frightening when that happens and he suddenly can't breathe.

Planning and future are very different and limited, gone is the feeling of owning the world and doing whatever we please, now planning is centred around what his needs will be.

Rejoicing ... well yeah right, we rejoice in everything we still have, but that's not the rejoicing we used to do.

With the bulbar effects, we can't even kiss well - his lips don't work well and at any point he can be drooling or coughing.

Cuddling is OK, but all I am aware of is how much more muscle wastage has happened, his upper body is like a skeleton.

I find it hard to get excited about anything much as he is so limited so I can't really share with him, and much of our time and conversation revolves around this horrid beast that is devouring us both.

And he feels the same - on top of all the physical symptoms he is suffering, he knows that we are losing our 'us', that all is changing and regressing to a carer relationship and he hates that too.

The cruelty is so huge I could never really describe it to anyone else but you people here.

 

[affected]

well today we went for lung function testing.

I don't have the results with me but the technician was lovely and explained it all to us and the on screen results as we went, and was really helpful in finding ways to help prevent air escaping from my PALS nose and lips to get the most accurate result.

His spirometry was good and he will qualify for Rilutek which he has decided he will try.

The MIPS and MEPS however was a pretty poor result demonstrating weakening of the muscles needed for breathing. I certainly know that his ribs are becoming very pronounced due to muscle wastage of the intercostal muscles. The expiration was the very worst.

On the way home it led him to more conversations on his instigation about the end of things and his wishes for a swift end once he reaches a certain point.

He goes up and down on different days - some days he is quite bright and feels fairly active, other days he feels heavy and lethargic and those are the days he often talks about the end. And yet he slept better last night than the couple previous.