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Reply by Marymary

14 Jun 2015, 4:40 PM

Hi all - i just want to say thank you for sharing all of your stories on this journey we call life - it so does helpt others in their time. It has with me and it is a different place to be for sure.

I tried to get people to come visit while he could still talk and hear well enough a few did & couple of called to ask whe nthey can visit and I say right now no because he is trying to cope with what is happening with his body., in one week he lost his taste buds, his voice, his hearing is going & not doing well over all but he is a man and not working and NOGT driving which all men do is a bit much for him to handle at this time, he won't always be in that place but right now what has taken placein a space of 1 week - he is trying to handle it right now., grumpier than a hurt bear but that is ok.

I have found in last week that people who have visited turn and look at me when they speak and they avoid eye contact with Wayne - strange not sure why that is? if I'm noticing it I know for sure he is., you can see it frustrates him., like I have cancer and I'm here right in front of you. It makes people uncomfortable for sure.

Why> You (people) face the reality of the evitable it's all going to happen to us at some time - death I'm referring to not cancer., and also I'm thinking a lot of people think well I'll slowly starting distancing myself so when this happens it won't be so hard when the time comes? Strange weird - we are human beings and we only have ourselves to deal with you know, so they are doaling or coping in their own way - if I don't see or hear it - it'll just go away?

I'm not saying that applies to all people but for the most part., those are the only things that come up for myself. It is sad to see how people react to someone who has a critical illness., it does not make sense to me but that is their journey not mine.

I would think or prefer for myself that you would want to spend as much quality time with someone that you can - there's no need to talk at times either., just be period . maybe that is just me though huh?

But yes we will get through it all regardless of others and how they perceive things we can only pray for them and let them be - I for one., think positive and go with every single day - today is a good day!!!

WWon't go with tommorow til it gets here - today is now and right now it's good.

Thank you for caring and sharing - makes difference - we're not the only ones who are experiencing what we are experiencing. Hugs to one and all :)

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Reply by GirlWithTheBlackBeret

18 Jun 2015, 11:47 AM

Hi MaryMary,

I'm sorry to hear about your husband. It's awful to witness our loved ones struggle but we are there to support them and see them through it because of we love them so much.

I think people react so badly to dying people because they don’t know how deal with the situation. In our culture, death and dying seem to be taboo topics. People say or do things thinking they are helpful but they aren’t. I remember when I was care giving for my dying Mom, people would ask a simple question like “How are things?” I’d want to say “Things suck! My mom is dying of cancer and it’s not fair that I’m going to lose her!” Eventually, I realised when it came to dumb questions and people behaving stupidly, it was just easier emotionally to ignore their comments/behaviour because they don’t realize what they are doing. Getting upset with them just drained my emotionally and I needed that to conserve that energy to care for my Mom.

The other thing I did was limited visits with people who behaved stupidly as it drained my Mom too. If people want to visit but can’t behave in a way that doesn’t stress you and your husband out, limit their visits and don’t feel guilty about it. At the end of the day, it’s about your husband and you and NOT about others needs or emotions.

Hope this helps,

GWTBB

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Reply by Marymary

03 Jul 2015, 9:32 AM

Girl with the black beret - thank you for your post.

I have been beyond busy and just reading your post now., I so get the people and even family memebers are know they care but sometime everyone makes it sounds so easy just get him to drink water and tell the dr's - what??? I can't pour stuff down his throat. He is miserable and does nothing at this point but swear and say I'm fed up., and then if I suggest a feeding tube he tells me stop talking negative to him and all I say is hey think about it ok. Then the dr to top it all off says well he's at the end of his treatment and putting a feeding tube in at this point is evasive procedure ya ok so what is going to happen over the next 6 weeks., when you all will reassess him again - what exactly. We his son and I are seeing him and know he is not doing well but he puts on a great show for the dr and nurses and minimalizes all things to them. He has not gone #2 in like 9 days and that's ok., maybe - maybe going pee twice a day and that is ok with you all? Like what the heck.

Yes we have him on laxatives we'll see tommorow if that works but I'm concerned maybe his body is starting to shut down., I tell the dr's the truth and he says no mary and I'm like hey why would I lie why - how is that going to benefit me., I have no reason to exaggerate things but to him he doesn't want to land up in hospital again - I get that but unfortunately I think that is where he is going to land up sooner rather than later. Not because I or his son wants him there but we thing it would probably be better for him. He'd be getting something in his body at least. We (my son & I) had lunch today and we dsicussed things he wants to have a chat with his dad and say hey dad your scaring me cuz your not drinking enough let alone eating and if you don't start we are taking you to hospital period. So your better start drinking cuz we're giving you til Monday and that is it. Sad that it has to come to that point but hey.

The other day he told a family friend that at the beginning all he wanted to know if dad was going to die that was it., now he is thinking that might be better for him than the suffering he is going through. I cried my eyes out, first for him admitting it & so courageously saying it out loud., no he does not want his dad to die but sees it as as being better than sufferring so much. I don't know if anyone else will get that and yes my sons loves him a heck of a lot but it is so hard to see on a daily basis. He also said his dad told him to go away when he's wanted to help out - dad can I bring you drinks or make some thing for you and his dad say no just leave me alone - go away. Not meaning get out of the house but leave him be., he does NOT want his son to see him like he is - which is crap. He lives here. I was none too please about that., was wondering why he doesn't hug or talk to his dad and I've been encouraging it and my son told me this and I had no clue whatsoever., you can't shield him from this at this point you goof., he lives here and you are going to have to suck it up and you deal with it cuz our son is dealing with it to the best of his ability, he's 18 and acts much more mature than most and does deal with the reality of this whole entire situation much more than his dad seems to be doing. Yes I know he's the one that is going through it but we are seeing it and that is that.

He wants to protect his son but your not your turning him away which is BS. I will be talking to him about that this weekend. He needs to know our son is concerned and worried and you are the one who needs to get away if you think for one moment that he (our son) should not be seeing him the way he is - you are so delusional - it's way past the point. God men I tell ya!

Oh well I am feeling a touch guilty yesterday he wanted me out of the house he didn't need anyone and to get out he didn't need a babysitter., he was upset so I went out for 2 hrs then came back did compresses and medicines then went out again after trying then went next door to neighbors til 10pm. then today I fell asleep this afternoon around 430-5pm., it was 32c degrees and woke up at 115am., obviously my body required it but no one dealt with wayne., our son was out and I slept., so he did not have medicines., nor had compresses on his neck ., nor anything else. So feeling a tad guilty. But hey what can I say I slept. now i'm wide awake.

Just talked to our son and he said he had a chat with his dad and said you need to drink more and if you don't your going to land up in hospital and people who land up there normally don't get out dad and if your not going to drink or try to eat then your not going to make it he was tearing up and his dad listened to him and he finished his booster juice and had a 1/2 bottle of water and tried so now I'm not feeling so bad. He listened to his son and didn't push him away and they had a good chat., as his son said I love you and you got to do more dad I don't want to lose you. Whew I'm so proud of him courageous, brave and so full of life and all while I slept they managed. I learned a lesson here today I sure did.

HE has his LAST radiation treatment Fri morn at 9am then ??? I am worried about what going to happen now - can't help it!!! I will still only go with today and what ever that brings.

thaks for listening and life goes on - it so does even while your body takes the necessary rest.

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Reply by NatR

03 Jul 2015, 10:28 PM

Hello MaryMary and others on this thread.

I just wanted to reach out and hug you after reading this last note about your husband, your son and your fatigue. You are walking on a tightrope - waiting for news, waiting for the next shoe to drop - trying to talk to your husband, your son, the doctor and staff.. and through it all - you are a pillar of hope, strength and support.

No wonder you fell to sleep and slept hours. No wonder you feel abandoned and isolated.
It is very difficult for anyone outside of your circle to deal with the wait, the worry, the difficulty of what to say, what to offer - and it is easier to just stay away...and be silent.

It is a very hard thing for families. It is also a very hard thing for outsiders to keep supporting, not knowing what words to say. I have to tell you that from what I read - your energy is keeping everyone going. Your husband counts on you, your son counts on you...and you are trying to be everything for all people.

I hope that writing to the board makes you feel a bit better. Sometimes a bit of feedback from people who arent in your situation, or your town, can make you feel better about what you are doing.

Don't be hard on those who stay quiet..they just dont know what to do. They want to help but dont know how. Others tend to come and fill the place of older friends sometimes. Strangers going through tough times too - can understand. Its a common ground.

Anyway. Sorry to babble. I just wanted you to know that I read your note. I am not always on the board - but today I had to reply.

Hope that the coming days and weeks will give you a bit of respite, peace and easier times for your husband who has been dealing with so much with your help.

You are making a difference for him. Your son is watching you and learning how to do it too.
Sending my thoughts your way.
Sincerely
Natr

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Reply by Marymary

07 Jul 2015, 9:17 PM

Well you know we speak of friends/loved ones etc., well this would have to take the cake. I think.

Sorry I just can't help but be cranky pants/whine or grumpy or whatever you want to call it - I just am & that is so not who I am - weird. I pride myself on being so spiritual and for some reason I find myself being this different person - so strange.

the saying god does not give you more than you handle i have reached my limit - I so have. It sucks about others., as you know I'm caregiver to my son's dad., we've not been together for 16 yrs but I have been with this man for 15 years and of course we've all gotten along., they put up with one another it's not like they are close friends but they manage pretty good., boyfriend and ex., they always have for my sake as well as our sons.

But just this past weekend on Sat. I actually took time out for me all day went seedoing. swimming in lake, a romantic picnic., more relaxing, napping under shaded tree., fresh air with the one I love it was a great frigin day!! Then whammy at end of day 11pm he tells me he can't do this anymore., its not going anywhere etc. I told him just cuz I'm living there it is not like that at all., he said I know but we're not going to go anywhere - I asked is it because of some woman....he said ya she is interested in him and he likes her and wants to persue it because...oh my gosh I hurt so frgin much I truly do., I've always lived on my own and he has sick parents and a kid same age but we always make time and he'd come over we'd have dinner movies., walk, day trips., etc., but now I don't have my own place....hmmm yep it truly does suck.,,,,no if's and or buts about it. this truly sucks., he still says he loves and cares for me etc. etc., and he hurts. I told him to stop texting me he loves and cares for me he's just trying to make himself feel better by that. I told him your timing is so eff'ing off., why now why. I told him I release you. go be with her and just leave me be., everything dies - it's natural so go go go. :(

My heart has been in my throat., and it hurts like hell but I honestly can't blame him what is he going to say to people my girlfriend lives at her ex's but we're still together although we can't be together at the place because her ex doesn't want no visitors and doesn't feel right and we can not have alone time etc. etc. etc., - why did I not even see this coming - I'm a dimwit even though I am smart most of the time lol.

It Hurts so much I can't even talk about it to anyone my son said mom you have been crying and upset for 2 days now please talk to me all I could manage was it's not bcuz of your dad and I'm sorry I just can't right now. I just can't hurts like hell too much. I will talk to him later today, but in a way it's rejection and failure and not good enough for someone else., even though I'm trying to be for another - I know doens't make sense but you know what I will get through it some how some way I will., I am a stronger person than I feel like right now and it is only temporary right - I sure hope so. One day at a time., today not a good day., I can share with you all cuz you don't know me and well that makes it ok to share with you right now. I just want my heart to go back into place not be stuck in my throat., and not to cry while driving or at a grocery store....one day just not today

Friendships - love relationships - cancer should not have that kind of effect on the people who are not going thru it. but unfortunately it does. Sorry to be so depressing / sad.

I just can't help it right now :( I do pray for all & I still pray for him he has his needs and well I can't do that if I'm living at my ex's can I. But then again I just can't turn off love like a tap., doesn't work that way.

Thank you listening to my criping :(

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Reply by oldbat

07 Jul 2015, 9:40 PM

Marymary, here's a BIG virtual hug for you. I do understand the terrible pain you are feeling, and wish I could say something, anything, to ease your hurt a little.

You are a good, caring person who deserves much, much beter. And, you will probably receive many blessings somewhere down the road. For now, concentrate on the wonderful work you are doing with your ex. I'm sure he and your son appreciate that deeply.

As for your boyfriend, it sounds like he too is stretched to the limit. And you are both hurting so badly, and needing so much love and care that you just can't make it together. for now. My guess is that, after 16 years of happiness, he'll be back. If you want him. The other woman may not have the issues you have, so can be more of a prop for him - at this moment.

Remember that wonderful day you shared a ittle while ago? Keep it in your heart and mind, and build on it for yourself. The lake, the shaded trees, the fresh air are still there, and always will be there for you. Take some time out to bask in all that - just for yourself. Nature is a great healer. Let her be that for you.

And, come back to share some more of your story with us. We'll always be heare for you.

oldbat

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Reply by NatR

07 Jul 2015, 10:04 PM

Dear Marymary,

Oldbat had some good words to share with you and I am going to add mine to hers.

First of all, thank you for sharing your pain with us all. We might be strangers, but we are all friends and caregivers - and we get it.

Your story is a tough one - and you know...you couldnt possibly see this coming because at the time you made the move to go back and care for your son's dad - this possibility wasnt on the horizon.

I can only say that like Oldbat mentioned, your bf is just overloaded and cannot give anymore to you or anyone else. It cant be helped, you are doing what you feel is right to do...and no one can take that away from you. Your son will be eternally grateful, your sons dad also is going to know you are there because you care...about the son you both have, about the past you shared.

Like Oldbat said...your bf may return...and if he does...I would give him a chance - it is more than anyone can handle...to caregive...and he knows you are doing the right thing, but he is just backing out because it is too hard right now.

Oh, I am so glad you had at least some moments of peace and relaxation a few days back - you needed that. Just sorry that you had to get this hit over the head.

I recently did something in my life - that was about standing up for others, caring about others...and like you....I didnt see the reaction coming. I didnt know people could be so cruel - but they are.

I feel guilty and I bet you feel a bit guilty that you let your bf down. But...you have weighed it all out. You have done what you feel is best...and like Oldbat said...you will be rewarded in the future. I dont understand how that all happens, the reward system for doing the right thing...but I have lived enough years that I see...it is true. Time has a way of working things out...and down the road you will be typing your support to someone else on Virtual Hospice...because you have had this experience.

Keep typing, let the tears flow, dont beat yourself up.
Life is too short to take on any more pain.
Thinking of you and sorry you are so burdened right now.
I dont know you but I support you as a friend who cares....another caregiver who understands how hard it is to walk away from someone who needs you

Hang in there...hugs from me to you
NatR

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Reply by Marymary

08 Jul 2015, 9:10 PM

ahhh thank you oldbat and natr thank you & ya the hurt was just so very much & like I say wish my heart would go back into place and it will I know.

I did email & text him that i do not hate him but just real hurt/angry/ mad/sad and I have given up so much: independence., my own place and have to adjust to so much and it's just coming to me now things I miss so very much - things I did all the time @ my own place. And yes I want to go home to my own place but not now.

For some reason it never even occurred to me what I was doing, just that I wanted to be there for my son then his dad. I never factored in how much I would miss my OWN place., my music., my incense (lavender @ nite to go to sleep with); my lavender baths (his bathtub sucks no way I'd use); my plants., he doesn't want them in the house cuz of cats., I can't dye my hair cuz he doesn't want that done in his bathroom., he doesn't like candles burning (not smelly ones) which I do to fall asleep to the ambience of it all., cuz he had a housefire back in 2004., it goes on and on and on. All my own things they're in storage. I miss them. I know they are just things., but they meant something to me & NOT seeing them on a daily basis is just coming to me now., I know I have made my choice and YES I would do it again but I'm missing them that's all. Funny I'm not a materilstic person either lol.

I miss Friday's, cuddling/snuggling on couch on with my b/f and watching movies., or during week dinner & a walk., you know things - I know they're just things I do honestly. Yes there is a lot more important things going on right now so....I get that and I am beyond worried & concerned so maybe these things are just there to take my mind off how very worried I am., put my mind elsewhere for now???? you never know huh

As for my son's dad he finished radiation last friday and will be doing hydration til this friday and now they want to extend that even which is ok. He is NOT even drinking 1/2 bottle of water; he will have a decaf coffee in morning, glass of milk, 1/2 pkg of cream of wheat & 1/2 of a cup of soup per day and for some reason the doctors think that is ok and will sustain him? I don't get that., there is NO protein happening whatsoever but not much else I can do.

I've been trying since last friday to get him to our hosptial to do hydration but that is not happening I was in tears this mornign about that., we have a 50 min drive to get to hospital now., 1 hr hydration add in extra 15-25 mins for hookup, then 50 mins back again., it's always a 3 or 4 hour morning. where as where we live it is a 3 min drive to the hospital compared to 50 mins wow. But they said they can only do july 15 & July 28th that is it., and they are not open on weekends and they are booked solid - i cried my eyes out. They were waiting to hear from his dr to see what he has to say., no one calls me back or let's me know whats going on unless I phone so ridiculous. Beyond frustrated....

Last friday both him & I were glad that we did not have to travel every single day now only to be told on last day they still want him to do hydration well crap I've had it with the travelling every day - I so have we've been doing it for 40 days already with only 5 days where someone else has driven. Now he doesn't want anyone else driving him I think cuz of the way his neck looks and way he's feeling he's always spitting up bile he says. So that leaves me :(

I spoke with my sis after talking to hospital in our town and she said well you signed up for this so there you go., I said ya i did but I didn't want to be doing this all alone., and she said wish I could help but I can't she drove him out 3 times., last one being 3 wks ago., if you were not the one there for him who would be there no one., I said ya with my hip (hurts like heck) I did not want to do it every single day so you signed up for deal with it. You know people who have had cancer and what they go through so suck it up. I said you make it sound so frigin easy & it's not that easy., all I am saying is how frustrated I am with the dr's right now cuz no one calls back they just wait til you call them which is BS. this is supposedly family!!! ya ok

She's not once asked how our son is doing nor once asked how you holding up she'll text and say how is he doing cuz he's not responding well now she can kiss my frigin ass - sorry for swearing but come on.

So ya that is how it is right now - we'll be ok just all too much sometimes now all time

thanks for caring - I do apprecaite it i so do

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Reply by Marymary

11 Jul 2015, 4:24 PM

Hi all - well I've come to that place where the pity party is over - not doing me any good., i will live and i will get over it one day right now I have to concentrate on my son's dad!!! It kinda helps me put my focus on something else, he is so not feeling good now so I'm feeling guilty about my own woes and how stupid they are when he's battling for life - I so do.

he is at his worst right now yesterday & today and he states it., I feel so eff'g terrible and how much longer can this go on for & I can't do this no more I just can't., it's so hard to hear because I can not say anything to make him feel ok forget better nor can I conform him nor can I do anything else but do the medicines., compresses & provide the kleenex's and blankets etc., it so does not feel like enough - but what else can I do. Pray pray pray - not I'm not religious but it seems to help a bit.

I so do pray for all out there who are dealing with cancer., the patients, the loved ones., friends and hospital workers, nurse., doctors and the hospice / palliative care people. They are some very special people out there doing the best of their ability to assist the ones going through this & I don't think they get enough credit by no means. because we're all so caught up in our own situations for our loved ones we kinda forget - you know.

So a heartfelt thanks to all of them - keep on and carry on and one day at a time!!!

Thanks for listening to my criping this past week - like I say pity party is over now. :)

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Reply by Marymary

13 Jul 2015, 4:38 PM

Well was sure scared & unsure yesterday morning he was not getting out of bed., I was going to grab the neighbor and say put him in the car for me please.

GUT INSTINCTS - are there for a reason listen to them ok!!!

Our son got him up @ 130 and he so was not doing good., brought him to hosptial for hydration only to find out he had fever of 103.5 so they hooked him up and he was there til 930pm and they let him go - I was like what., he still has fever but they said it is not sepsis(?) have to look that one up I think that it is infection in blood. His white cells real low., IV antibiotics and hydration and a anti nausea med in IV and he will have to go back every day for this.

If he has NO infection why are you giving him antibiotics? I have more questions now than I did prior to ER visit.

Oh well he is happy to be home - my son and I are hesitant about this just for the fact we are NOT nurses and can only help so much.

Kinda hard to take temp when someone is constantly spitting and wretching isn't it.

I will go out today and see if I can find one of those ear ones., would be so much more better.

We go see chemo dr. tommorow and I want to know #1., why did no one call on Friday, they received blood work from Thurs., which would have shown his white blood count for cripes sake and we could have avoided this ER visit. I know it was just a scare and hopefully the last one - I HOPE!!!

Yes so many questions now not enough answers and will just have to go with today. Not tommorow but today.

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