Last night's meltdown

MichelleP

It's been 8 months now and I think I've kept it "together" for the most part until last night. I try so hard to be patient with my husband knowing what he's dealing with, I really do. But it seems that the more time that passes the harder it is to please him with "anything". He's better since they stopped the prior chemo and doesn't have the nausea or fatigue anymore...that's good, right? He's on Tarceva now and the famous rash has started, but it doesn't seem to bother him. So, why am I getting so stressed out you ask? I haven't had more than 3-4 hours of sleep per day since this journey began. I'm TIRED...I need some sleep. I'm beginning to think that just the "idea" of me sleeping and not being on watch is what scares him. I don't know! I'm not the kind of person who can sleep during the day (he does) I never have been able to do that. So.....last night he was resting nicely and I started to get ready for bed. He sits up and says to me " I think it's going to be another one of those long nights because I won't be able to sleep". Suddenly I just started to cry and cry and cry. I was so tired! I asked him why couldn't he sleep and he just said because I'm worried about my heart rate (it's been a bit high....not dangerous at all). So, I explained to him that the constant worry is what's keeping it high and that if he would just relax he'd be fine and able to sleep. He actually wanted me to stay awake "again" just to watch. Now mind you, his hospital bed is flush with mine and I always wake up to check him but for some reason he just doesn't want me to sleep! I don't know what will happen if I just drop from sheer exhaustion. Who will take care of him? I can't seem to get him to understand that I also need rest. Maybe 5 hrs a day would be a treat? Sorry for going on and on...but as we all know sometimes just putting feelings on here helps a lot. Thanks.

newbride

I'm there with you
It must be the week for meltdowns. It's been 7 months for me since my husband was first diagnosed. 4 months since the cancer came back (he was fine for 2 months - April/May). He goes in for treatmetn for 5 days then home for 9. During his off week he is suppose to go in for a chemo infusion. He refused today and I just had it. Last week he was talking about finding other cancer centers if they tell him that this didn't work after the treatments end - well I just looked at him and told him that if he didn't go today then there is no reason for me to look for other centers because obviously he doesn't want to fight - you can't do it 1/2 **** when you want to -- it's all or nothing. Yes, I know he is in pain and hurting but it affects us to...not physically but mentally. I spoke with the doctor and he said he has no idea how missing the treatmetn will affect the overall plan but of course they would prefer for him to come in but of course we can't force him. It's just so frustrating and to top it off so many people have become distant, my friends don't call as much and when I say something they are like "oh well we know you are busy" and if I hear another story about a person who had cancer and is now cancer free I think I will strangle the person who tells me -- it doesn't HELP -- not when you are told your husband has a very rare cancer and the doctors really don't know what will respond to it and he is the first person in the US diagnosed with it and there are only 2 other reported cases in Asia with NO history to know how they were treated and whether they survived or not.

Sorry....I guess I really didn't help you did I?

MichelleP

newbride said:

I'm there with you
It must be the week for meltdowns. It's been 7 months for me since my husband was first diagnosed. 4 months since the cancer came back (he was fine for 2 months - April/May). He goes in for treatmetn for 5 days then home for 9. During his off week he is suppose to go in for a chemo infusion. He refused today and I just had it. Last week he was talking about finding other cancer centers if they tell him that this didn't work after the treatments end - well I just looked at him and told him that if he didn't go today then there is no reason for me to look for other centers because obviously he doesn't want to fight - you can't do it 1/2 **** when you want to -- it's all or nothing. Yes, I know he is in pain and hurting but it affects us to...not physically but mentally. I spoke with the doctor and he said he has no idea how missing the treatmetn will affect the overall plan but of course they would prefer for him to come in but of course we can't force him. It's just so frustrating and to top it off so many people have become distant, my friends don't call as much and when I say something they are like "oh well we know you are busy" and if I hear another story about a person who had cancer and is now cancer free I think I will strangle the person who tells me -- it doesn't HELP -- not when you are told your husband has a very rare cancer and the doctors really don't know what will respond to it and he is the first person in the US diagnosed with it and there are only 2 other reported cases in Asia with NO history to know how they were treated and whether they survived or not.

Sorry....I guess I really didn't help you did I?

newbride
Yes, you did help me dear one. Sometimes I feel like I'm so alone and knowing others are feeling the same pain and frustration and can understand, it means a lot to me. I too have people who have become distant. Funny how people are either just so afraid of the word "cancer" or when they ask what I've been up to....well for God sakes....so my replies are always the same of course because I never leave the house unless it to take hubby out for medical reasons....I must be boring as hell huh? And I would never be so self centered that I think others shouldn't have a life...but why...why...do they continue to go on and on about dinners they've gone out to and shopping they've done etc. They'll even tell me....oh JCPENNY has a great sale on purses...yea right...I'll run right over there. Well, maybe I am selfish, but I want my life back...I want my husband and our "old life" back. Don't people understand how hard this is for us?

Beckymarie

MichelleP said:

newbride
Yes, you did help me dear one. Sometimes I feel like I'm so alone and knowing others are feeling the same pain and frustration and can understand, it means a lot to me. I too have people who have become distant. Funny how people are either just so afraid of the word "cancer" or when they ask what I've been up to....well for God sakes....so my replies are always the same of course because I never leave the house unless it to take hubby out for medical reasons....I must be boring as hell huh? And I would never be so self centered that I think others shouldn't have a life...but why...why...do they continue to go on and on about dinners they've gone out to and shopping they've done etc. They'll even tell me....oh JCPENNY has a great sale on purses...yea right...I'll run right over there. Well, maybe I am selfish, but I want my life back...I want my husband and our "old life" back. Don't people understand how hard this is for us?

I really relate to what you
I really relate to what you are saying...I just want our lives back again. Since my husband was diagnosed in March, my life primarily consists of working (I'm trying to increase my hours to make up for some of the income lost when he went on LTD), and medical appointments. I feel so badly for him, he misses his job, can't drive any longer and feels useless. If I start to feel sorry for myself, I feel guilty. You are right, if you have never gone through something like this, you can't possibly understand how difficult it is. Hang in there. You are in my thoughts.

SonSon

YOU MUST GET REST
You need to get rest. PERIOD.
He needs to take a sleeping pill, anti-anxiety pill - whatever it takes to rest at some time that allows you to also rest.
Here's an activity you can do while you are awake... get on your computer and search "RESPITE CARE SERVICES".
I have spent many a night sleeping lightly when my mother-in-law was still ambulatory but beginning to sway and fall...I had to just go to bed remembering HER words...do what you can and leave the rest to God.
She is confined to a hospital bed now but I still have to exercise the self care necessary to allow myself to sleep. There have been a few nights where she has been agitated, restless and confused... a couple diphenhydramine do well enough to get her to rest and me, in turn, to rest.
Fatima

newbride

Beckymarie said:

I really relate to what you
I really relate to what you are saying...I just want our lives back again. Since my husband was diagnosed in March, my life primarily consists of working (I'm trying to increase my hours to make up for some of the income lost when he went on LTD), and medical appointments. I feel so badly for him, he misses his job, can't drive any longer and feels useless. If I start to feel sorry for myself, I feel guilty. You are right, if you have never gone through something like this, you can't possibly understand how difficult it is. Hang in there. You are in my thoughts.

There's so many of us
Yes, Beckymarie and Micelle you are both sooooo right --- if you have never gone through soemthing liek this you don't understand. Even my mother I feel so bad when I snap at her -- I know she means well when she asks how my husband is but he feels like crap and that doesn't change. Then I know she is trying to make conversation asking if I spoke with anyone and my answer is "Who would I be talking to no one calls ME" -- but she will tell me about everyone who is calling her asking how my husband is and how they tell her to tell me they asked but don't want to call and bother me. And then what about the people who ask what they can do for you - don't ask if you need to ask then you're just saying it to feel better cause you don't know what to say. The ones who really mean it come right out and say "I'm going to cook ziti and do you like ziti so I can bring some over for you so you don't have to cook" those are the ones who really mean it! I keep saying that I'm so glad that his treatments are almost over but at the same time I'm so scared that this might also be the end, if they didn't get all the cancer there might not be anything more they can do. Then I worry that if they did get it all will our lives be back to "normal" or will we always live with fear that this thing will come back. I so miss my husband....he's still here, still speaking and managing on his own but it's not him it's like living with a total stranger. It's so hard to come home from work and see him - I mean I can't say "how was your day" I know how his day was -- sitting on the couch watching tv and overall crappy. We don't even hug anymore cause it hurts him. The best I get is I kiss him on the wrist....he hasn't even slept in our bed since June since he says it hurts to lay flat and the pillows (even all 10 of them) don't prop him up enough like the couch does. I have even asked him to sleep in our bed just once a week - or even just an hour on the weekend mornings, but he says he's not comfortable -- sometimes I think he is just preparing me for the worse. I hate thinking that way but I just don't know what else to think sometimes. It's like he's already gone sometimes. I mean I remember when I use to get dressed in the morning and he'd make a comment about how good I look - he never even mentions it anymore. And if I mention it to him it's always that he's too tired, it hurts to talk, etc. It makes me feel so selfish.

Everytime I log onto this site I thank my lucky stars that I have found others who can relate.

seanslove

melt downs and no sleep
Michelle P,

I have walked this path and understand how the lack of sleep makes you only want to melt down and cry. I believe the lack of sleep all starts with the first stay we all face in the hospital,as the nurses come in every two hours and wake you whether need or not,part of their quote unquote job. After that, you as well as your spouse get on that same need for being awakened non-stop. For Sean,our last stay in the hospital,as he was having so much trouble sleeping the first few days there,I actually yelled at a nurse one night for waking him,as it was the first time he's slept in days,of course the staff was less thn happy with me saying they were just doing their job,I said well you've got all these monitors hooked to him,you can see at the station how he's doing,just leave us alone the rest of the night,if we need you we'll call as your not doing anything for him at this point I haven't been doing at home. Boy,was I ever hot that night.
As for sleeping in bed together and holding one another, Sean and I hadn't been able to really hold one another since May,however, as time went on,we would make time each time he was on his feet to hold one another,I would lightly place my arms around him and tell him you pull me as tight as you can with causing you pain,I'll just stand here,that was our answer. When the end was getting closer,no matter how much it hurt him,even laying in bed he would reach for me and hold me while I was standing by the bed.
On the sleeping together,or at least layingin the same bed,what little sleep either of us had,at first when we came home with his chest tube and drain box,he was worried about me and the dogs being in bed with him,therefore,I would go to the couch,we have a small one bedroom apartment,and he would call me on the walkitalkie if he needed me during the night. However,after about a week,he feared more being those few feet away from me,than me and the boys in the bed,and from that night on,we never spent another night not in the same bed,no matter whether the drain was still there or not or whether the CAD pump with chemo flowing was hooked up or not.
Even in the hospital,and you know how small those beds are,until the night of his first respitory attack,we laid together at night when everyone was gone,much again to the staffs dismay,as they would tell us this is why they brought in the recliner,however,to us it didn't matter as this was how close we were and remained. Once the big ari machine was hooked up,however,I could not sleep in the hospital bed at the hosptial with him,far to many tubes and wires hooked to him,therefore,I placed the recliner up against the hospital bed,and laid half on it and half on the bed,therefore, we were still touching at all times.
I know what you are going through with your husband not wanting you to sleep,as the last couple of nights we were in the hospital,even if I would leave the room for a couple of minutes,which I would always only leave when he was asleep and at that leave his cell phone by his hand so he could call me,he would wake without fail and ask were I went. Therefore,after this happening twice,I never slept nor left his side until the funeral home,three days later came to the house and took him away.
I can not imagine how our men feel and the feelings of worring about sleeping,as I believe in Sean's case,he worried if I fell alseep,I would not be there when the end came. In our end, there were no good byes as he had the second attack here at home only a few hours after coming home,instead of good byes,with a nurse hovering over top of us,his final words were help me,to which I had to tell him there was nothing more I could do. He kept wanting to take the oxygen mask off,which I kept holding on his face,watching the tears fall and begging for help,and all I could say is I am helping you and I love you. Sea lasted from this happening at 7 pm on Tuesday night until 8:30 Wedensday night before he passed. He passed quitly by taking one last breath as I laid by his side.

junklady

Meltdown too.
It's only been since mid July that my Dale was told how bad he was. He has chosen quality of life. I have spent the entire summer crying, some nights I just can't stop and have to go outside. He always says, "don't cry". I think I'm taking this worse than him. Now on Friday he is going to the hospital to get a trach tube to help him breathe. I guess it will give him more time. Hospice will bring the suction equipment over when we get home from the hospital next week. God help him, I don't him to suffer. Last night he broke down and cried and told me how scared he is. He is not one to get emotional. I can't sleep, up during the night to see if he is still breathing. Finally get up at 4 or 5 and come right here to read. I want to talk to him, because he will never talk with the same voice again. I want him to hold me because our lives will be forever changed. I kiss and hug him as much as possible. Spent all day yesterday putting my summer business away. Finally had to ask a friend for help. You know how friends say they want to help, well I finally said I need help. Dale needs help. We have cattle and pigs to deal with. He can't do it all. I told his friend to get over here and help him fix some fence. And on another subject, how about the friends who are an authority on everything, they drive me crazy. The one who gives medical advice. I outright told her "you are not his doctor". I don't care if I offended her or not. Unfortunately this woman is the wife of Dale's best friend. What do I do, just keep my mouth shut? Sorry, I just needed to vent like everyone here. I'm thinking of all of you. God bless you.

onlyhuman

I hear you
My husband was diagnosed with GBM in Mar 09. Prognosis is poor. He is still able to walk (with some issues getting up from sitting position) but generally can still take care of himself. He also has some short term memory loss. However, over the last few months he has definitely become more "high maintenance". My mum and dad have moved in with us to help out as I work full time and we have 2 girls (3 and 9). Also, its reassuring for me that someone is home with him (just in case he has another seizure). However, he keeps asking me to get mum and dad to leave. He expects me to keep my full time job, run the house and kids and keep up with all his doctor's appointments because this is what we agreed to do for one another when we took our vows. I have explained to him that I am no superwife. This need to have me do all things and to be with me when I am not at work is a little unnerving at times. I used to have a coffee every Saturday morning with a girlfriend. Now I still go for the coffee but he always asks to come along. I think its part of their condition but like you I do feel like he's driving me over the insanity line some days.
Newbride, I read your post and can totally relate! Cycle 4 of chemo (Temodar tablets), on day 3, he decided he was not taking any more tablets (according to him the kids had been too noisy that day and he couldn't put up with it anymore). It was the illness and the meds talking, not the man I married so I screamed, threatened, and finally begged and he did end up finishing the course and continuing with further courses. I have been warned about behavioural changes and personality changes but some days its harder to cope with.
And stories about people who have survived it? Heard those too. My husband's sister keeps talking about her neighbour, a seven year survivor of another form of cancer and keeps saying how we should do what he did,go on a mediterranean diet. If only it were that easy! (PS hubby was in 8th year of remission when the current tumour hit)She also keeps asking why he is not on the same meds her neighbour was on and has told me she is disappointed with the way I have handled his care. This from the same person who rarely visits and even when he has been in critical care has taken over 2 days to come see him when she lives in the same town! You gotta laugh otherwise such people will leave you in tears! OK my rant is over.

akbetty

Michelle
Oh Michelle, I know how you feel. I don't even remember what it feels like to be rested. But please be careful with your health. I did what no caregiver can ever do-- I got so sick I could hardly function. We went through a brutal two weeks and I know I didn't take as good of care of my husband as usual. Also, the other night when I was up with him, I was so exhausted I stumbled and flopped right on the floor. I just laughed it off, but what if I had pulled him down with me? The only suggestion I can offer is to try to learn to nap when he is sleeping. I think sometimes people don't like to sleep during the day because they feel like they should be "doing something." But getting rest is doing something, both for yourself and for your husband. And don't feel bad about the meltdown. We've all done it.
Betty