Angry moments

[Mick n Ang]

Had a real eye opener today and it probably doesn't help that I too, am not at my best at the moment after having an ovarian cyst removed, but never the less Mick really got angry this morning.
He needed to get onto the commode which I got then helped him transfer to but that didn't seem quick enough or good enough because he didn't go straight away, so now he wanted a suppository (no probs) I sighed to myself because this meant I had to go upstairs for one. Big mistake (never again will I openly sigh) OMG did he start shouting at me like it was all my own fault for having them upstairs and that I didn't know how bad it was for him, and I should count myself lucky. (funny didn't feel very lucky having to trundle off upstairs with a belly full of stitches)
I understand he is going through a rougher time at the moment and breathing issues and weakness are a big issue at present which are being addressed, but what am I to do.
He ended the rant with "I am never going to use that commode again, if I sh*t my pants then its tough, and if you can't cope with this then find me someone who can"
I can cope with "This" but can't cope with his shouting at me because of his frustration,I too get frustrated but don't we all without the Anger !
We spoke after an uncomfortable hour of silence, there was no apology as he never seems to think he has said anything hurtful, and he doesn't want carers so what am I to do xxx Ang

 

[mommagoose]

Hi Ang, hold your breath and count to 10. I understand they are angry. Has he talked like that to your before the onset? My husband its always about him! I would again talk to him about that ( a caregiver) on a good day. Explain to him how you felt. Let him know you want quality time with him too not just potty breaks. You have to take care of you and respect him at the same time. It is difficult. Sending big hugs to you.

 

[cervus]

Sounds like tough times, Ang. It's so hard, isn't it? It's unfortunate that he won't accept any body else's help. I agree with mommagoose's comment about talking to him on a good day, when you're both just sitting down (probably rare) and say you miss the husband and wife relationship and would like more of it in these heart breaking times. Maybe he'll understand and be more aware of your needs. Sometimes they need to be reminded - in sickness or in health and it works! Take care.....Yasmin

 

[Mick n Ang]

Thanks mommagoose and Yasmin, he hasn't normally spoken to me like that, just think things are taking him over the edge these days but hope not too many days like this, he just seems to be angry at everything and me, as I'm the only one here. I understand to a degree, just don't enjoy it much. (Please understand though I love him to bits) xxx Ang

 

[joni51]

Ang I know how you feel if I bring up any small thing, Bruce will just go off on me! Hard not to get mad back somedays..Specially when you are redheaded...you know they say we have bad tempers...lol seriously though, they sure can make it all about them at times I know.

 

[Mick n Ang]

I'm an orginal red head too Joni, so no that probably doesn't help, hopefully they will sort some of his issues out on Wednesday at the Lung centre. It must be hard not having the energy, but some times its hard as you say not to shout back and feel resentful too, God knows I don't want him to have this awful disease but it effects us both only he can't see it that way at the moment and I feel more vunerable myself too with still having stitches as only had my op on 18th, I'm sure tomorrows another day thankfully xxx Ang

 

[rcharlton]

Ahhhh...the dreaded sigh! Most often heard an hour past bedtime when both parties are exhausted.

Sounds like my household. I usually get the sigh just before bedtime when my wife is helping me blow my nose for the 5th time or after spending 10 minutes trying to adjust my bipap mask. We couldn't talk for a week after our suppository incident.

I'm hyper-sensitive to the sigh. I know that my wife is sighing at the situation and not at me, and I can't blame her. But I already feel like such a burden and - trust me - the last thing I want to be doing is having someone else blow my nose for 15 minutes. Maybe I am so defensive because I somehow feel guilty and responsible.

When my wife and I have blow ups like this I just imagine ALS taking the shape of a devil and laughing maniacally in the background. "Mwuh Hah Hah Haaaah!"

It is sometimes tough to remember that ALS is the instigator - not each other.

When it was becoming tougher to feed myself, I could not imagine being fed by someone else. I thought a feeding tube would be preferable. But now I have a team of feeders and I feel like a king!

I would recommend trying some caregivers on a trial basis. Preface it by handing Mick a toy crown and asking him if he would like to live like a king for a day.

Ang - you can't do this alone. And the sooner you get help the happier both of you will be.

 

[cervus]

It's funny because I just finished reading these posts and then had to help Bob on and off the toilet - pants on and off too. Sometimes it's harder than other times depending on how much/little he can help by lifting his feet. Anyway, I was trying to put his pants back on and heard myself sigh. It wasn't a loud sigh but a sigh nonethless! Sometimes it's just exhausting. Our bedtime routine takes about 1 1/2 hours and even though we try going to bed early, we usually end up all settled at around 11:30. The other night though we were in bed by 9 o'clock and it felt so good because I wasn't exhausted so we both stayed up and watched TV for a bit. We cuddled in his hospital type bed and it was so nice not to be doing but rather just being. We hadn't done that for a long time. Ang....about 2 weeks ago my husband was typing something out on his IPad, something that he needed and I just very nicely said I miss hearing him say I love you. We always said that at least 5 times a day and now even more. But since then, he's been "saying" it more again on his computer and not just asking for things. I know his energy levels are so low and that it takes so much time to type something out so that when he does communicate, it's usually with an idea he has or something he's thought about. But I just reminded him that I need that too. He's always treated me like a queen and has never been disrespectful, before or now so for that I'm eternally grateful. I was a bit grumpy with him a few nights ago also but because I was so tired. I don't like feeling that way. We started getting home care in every morning about 3 months ago. We were holding off on that but finally decided to get help. It has taken a load off my shoulders and it's nice to have an hour or so after I wake up to just sit and have a cup of coffee and check email, etc. Our caregiver is male and is strong enough to work on his own. He does range of motion exercises with Bob twice a week and showers him twice a week too. We do have a track over the bed which my daughter and I usually use to put Bob in to bed and then another one in our bathroom to get in and out of the tub when Bob's too weak to sit on the bench in the shower. It's so tough, physically and emotionally and I feel your pain....

 

[sadiemae]

"I'm hyper-sensitive to the sigh. I know that my wife is sighing at the situation and not at me, and I can't blame her. But I already feel like such a burden and - trust me - the last thing I want to be doing is having someone else blow my nose for 15 minutes. Maybe I am so defensive because I somehow feel guilty and responsible."


I need to make a copy of this and read it several times a day! This is EXACTLY how my husbands feels, although he doesn't say it. Thank You!

 

[cervus]

For me, the sigh is never directed at my husband. I find myself trying to feel what it's like to be in his shoes and my heart breaks each time. The sigh might present itself out of tiredness. Never frustration or anger. We all get tired at some point, not only now when facing this awful disease. We got tired before too and it's ok. So RCarlton, try not to feel like a burden. I know my husband says he's tired of being so helpless, of seeing others do what he should be doing. But we remind him it's not his choice, it's not because he doesn't want to or because he's lazy. And I'm certain that almost all CALS feel honoured to be taking care of their loved ones. I know I feel that way. Take care all of you....

 

[kmendsley]

A sigh...God I hate to see that day come. As someone diagnosed...I am hurting more from the fact that I am 'hurting others' by telling them I have this disease and having to think that I am going to have to make others change their lives for me.

As someone who reveled in the fact that I could sneak around under the radar, be in the background, and be the greatest actress ever for hiding my disease to all my jobs for the past year, it is unfathomable to think that it is going to get to a point where I am going to see that pain on my loved ones faces because of a disease that is taking over my life that I can no longer hide.

The sigh, to me, and maybe to your husband means not just fatigue, tiredness, or just annoyance. It means, my loved one is hurting from this disease, and I can do nothing to make it better, in fact it will just get worse, so if she has to sigh now, what will the future bring? Will she leave me when things get too rough? If this sounds crazy, don't think so quick that it is, as I have had people that I considered very close to me in my life that up and left the moment things got too hard. Not like I asked them to do anything either, even just telling them I had a terminal disease and they said I'm sorry, can't deal with this, and I haven't been contacted by them since. Hopefully this is not your case, and you will stick by your hubby.

I know its hard, and as a prior caregiver myself to my grandmother who has stage 4 breast cancer, you have to make sure you take time for yourself...especially just coming off surgery! Have a friend come by that you and your husband trust that can help out maybe for an afternoon and take a trip to the movies. Even just having this friend come once a month, once a week, or rotating people that are capable of helping is a good idea. Plus, it will change up your days a little bit and might help staying out of a 'rut'.

I wish you both the best of luck and patience as well

 

[Mick n Ang]

Thanks everyone,
It was nice to have the propective from the PALS sufferers as I am sure Mick does feel as you all do especially the thought of me leaving him, he has said this from the very first day that I would not cope and run off and leave him. (He has always been insecure) Trust me that is all in his mind there is NO WAY that will happen I love the very bones of this man, I wasn't sighing at him but a at how, if I had prempted that maybe I could have made my own life a little easier by having the things i needed to hand upstairs and downstairs, but we learn by our mistakes (I certainly won't be sighing a loud in future, especially after some of you have explained how it makes you feel too) and it will be better next time. As to carers thats a definate no go area at the moment, Physio and Hospice suggested we get some help after my op but he got himself so anxious and worked up (and we all know how much stress doesn't help) Our son has has helped as much as possible without affecting his work too much and we are coping to an extent, and hopefully if they sort out bipap he will have more energy himself and start feeling better about things too. Today is a brighter sunnier day and yesterday was just a cloudy, shaded day thats since forgotten and who knows how tomorrow will turn out. love to you all PALS and CALS xxx Ang

 

[EGBAR]

"I'm hyper-sensitive to the sigh. I know that my wife is sighing at the situation and not at me, and I can't blame her. But I already feel like such a burden and - trust me - the last thing I want to be doing is having someone else blow my nose for 15 minutes. Maybe I am so defensive because I somehow feel guilty and responsible."

I feel like this now. I have just started this journey, and the biggest thing I am dealing with right now is the mental issues of trying to face up to the actual issue at hand. But I feel responsible, my wife has already told me to quit apoligizing, but I just dont know what else to say. I remember when my Grandfather died, I was 9. My Grandmother cried and cried. I asked my Dad why is she so upset all they did was fight and argue. I am going to pledge to try and hold it together when the time comes, to try and help whoever is helping me cope. I know I will stumble on this pledge but I will try. I hope that you get some outside help Ang you need to take care of you too.

 

[Magpuff]

When you have alyays been very active, outgoing, and independent and also able to take care of all the household duties.....it's very difficult not to feel helpless, hopeless and a burden to the person that takes care of you and whom you love very much. Requiring assistance with personal hygiene becomes very humiliating
and frustrating. It's hard for me to give up the feeling of causing so much work for my husband even though I know he does it out of love and I would do the same for him. I know it's as hard for him to get through the day as it is for me. This is an ugly disease and I know there are many others who are far worse than I am. Thank God for leaving me the ability to still watch and enjoy the wildlife in the yard and laugh with my friends. One day at a time.

 

[olly]

hi ang,i am so sorry to read how difficult things are for you and mick lately.
i ofton think how hard it is for you cals,doctors and nurses even outside carers can go home and have time out but you can't.
i can see its frustrating for both pals and cals ,the only thing i can think of is for both of you to have time out by having some of micks care needs taken over by someone else.
this is not a sign of weakness.......you need to look after yourself and recharge your batteries.
thinking of you both (((hugs)))caroline.