Stir crazy and love starved

Normal to think this way

Vic, my first battle with the beast left me living in a lazy boy recliner in my great room for 5-6 months. I could not lie flat due to choking issues, and the coughing, moaning and groaning, plus the noise of the suction machine was just too much. This basically left my wife out on an island all by herself. We did have a minor issue or two which we were able to work through, but now going through this a second time, I probably over try to make sure she gets the affection she needs. In short we were married 23 years, best friends, traveled across the country with our boys hockey and lacrosse, and BAM, we are in the same house, but worlds apart. I would suggest you see a therapist to work on this, as what you are feeling and experiencing is very real. You also need to take care of you, and try to get some help with David's care Sao you can get a short break on a regular basis.

PM me if you want and I can share more with you.

Hope this helps

 Mike

 

wolfen said:

Step Back-Breathe-Regroup

Oh, Vivian,

I wish I had some better words of wisdom for you. How very difficult it must be to be shouldering all this as a newlywed. I've been taking care of my hubby for probably 15 years now. A lot of my life is doing little things, like changing the bandages constanly on his damaged feet, changing his socks, making sure his meds are correct. Just mundane stuff, but stuff that can grate on your nerves and sometimes make you think "Why can't you do this yourself"? But, you have to stop and think. David didn't ask for this any more than Ron did. Maybe our current reason for being here is as a helpmate. Sure, I'd like to run away sometimes. Not being a newlywed, maybe I don't miss the attention and affection like you do. I had it for a lot longer.

Probably, the hardest part for me is the grouchiness he exudes, but he was this way before he got sick. LOL So, I just tune it out and go on. After all, I know fear has a lot to do with it. That's why he tries to project this "I don't give a shi# that I'm dying attitude", while inside he's frightened to death. One of his biggest fears is how I will bury him, with no money or life insurance. It's a good question. One for which I have no answer.

As for your "friends". How dare they presume to live your life? Many good marriages have been destroyed by well meaning friends, even those not affected by illness, just meddlers.

I'll get off my soapbox now. A phrase from some movie I saw(can't remember which one) sticks in my mind. "Persevere to endure".

Luv,

Wolfen

Vivian
I'm so sorry. I can't begin to understand what you are going thru but I try. I imagine it's a very lonely and frustrating situation. I think it's terrible that your family has not stepped up to help you...have you point blank asked them for help?
I think it is horrible that your friends are suggesting you leave David and that he must have known he was sick. So many of us had NO idea that we were sick and felt fine until treatment reminded us we were sick. Those who've never experienced cancer either as a patient or caregiver have no clue what it's like. Even saying they have no clue, they still have no empathy telling you to leave. What would have been the point of David not telling you he was sick? That just makes me shake my head, I don't get why people feel they have to kick you when you are down. A real friend would be supporting you right now and not simply saying leave. I'm sorry.....it angers me and I can't help but vent.
Have you talked to a social worker or a therapist? This is a lot to take on and you are human, you need a little break once in a while. Ugh...I wish I were closer, I'd be more than happy to help.
All I can do is pray for you and I'm doing that daily. I find myself thinking of you several times daily.
XO
Billie

VivianLee5689 said:

Thanks

I know everyone is right.  It is just therapeutic for me to vent sometimes.  My EX friends just aren't mature enough to deal with someone dying.  I actually have one friend who hasn't called me once since David has been sick.  She knows what is going on via text so I can't blame what I am going to tell you on ignorance.  She started texting me a week ago about doing her taxes.  She finally got her W-2's and texted me to find out when she could drop them off.  I was a little put out so I didn't respond.  Fifteen minutes later she tried to call me.  I texted her back and politely said I had too much on my plate to do her taxes.  She replied Ok and that was that.  Did she ask what was upsetting me?  No. I have got to find new friends. Oh and Billie I have said something to my mom about staying, but she is uncomfortable with giving David meds and the thought that he uses a urinal so she is not an option.  My other siblings live hours away and honestly my brother and youngest sister have not even met David and my other sisthad lives several hours away and has young children, a teaching job and a military officer as a husband so her plate is full.  I don't have any respite.  If we get to the point of bringing in hospice I will get a little break.  Good thing I am only 42.  This is taking a lot out of me emotionally and physically. 

Completely normal

Vivian,

A little over 6 years ago my dad struggled with pancreatic cancer for 17 months. mom and dad were so fortunate that MDA could give them that much time - my mom used to imagine herself running down a very long road, getting away... It was healthy.

a friend of mine struggled with stage IV ovarian cancer, dx 12/02 - I was engaged to her son, who stopped talking to all of his friends and broke off our relationship, because he couldn't imagine spending his time doing anything else but spending time with her. .. when she was ready for hospice he called, I went, when she passed I helped by planning her service and being there, but he shut out the entire world for 3 and 1/2 years while she was ill. He went on a leave of absence.. He'd worked for a New York law firm for only 2 years. He ran 3 miles a day... He actually ran down that road.

what you are feeling is 100% normal. If you didn't want to mentally run at times, I think I'd be more worried about you.

i agree with everyone else, I think you need to get some time for yourself, so that the time you spend with David is more enjoyable, your head will be in the right place when you have to deal with friends with personal agendas.

at the cancer center, when David's getting chemo, maybe you could talk with one of their social workers... And ask the doctor or his/her nurse if you can get a nurse or home health aide to the house a couple times a week. And be ready to walk out that door when they arrive.. Go for 60-90 mins and do something for you! When you comeback you'll be a refreshed you. Some insurances cover that kind of care.

unfortunately, when our spouses get ill, and we are still newlyweds, we just got used to being "one" In unity. in some strange way, we take on their battle and fight with them but we are in the trenches.. But we aren't sick.. And they need us whole.. Moreover, I think they see as one too.. And they are holding on through us..we are their strength, their connection to "well", I find that much more intimate than his touch. It's just not what I expected.

Oh, and even though when Dan got sick my mom told me for the first time about her mentally running away? I was sitting in a hotel room and mentally wanting to toss Dan out the window .. It's our minds way of saying "enough" for this moment enough. Amazing he'd smile 5 minutes later and I'd melt.. But for moments my mind was trying to through away my stress. Perfectly normal for all the stress we've found in front of us. We didn't go looking for it anymore than our husbands did.

so if you imagine running away, don't be surprised if you look across the road and see another of us caretakers running beside you.. You are not alone.

Kari

VivianLee5689 said:

Thanks

I know everyone is right.  It is just therapeutic for me to vent sometimes.  My EX friends just aren't mature enough to deal with someone dying.  I actually have one friend who hasn't called me once since David has been sick.  She knows what is going on via text so I can't blame what I am going to tell you on ignorance.  She started texting me a week ago about doing her taxes.  She finally got her W-2's and texted me to find out when she could drop them off.  I was a little put out so I didn't respond.  Fifteen minutes later she tried to call me.  I texted her back and politely said I had too much on my plate to do her taxes.  She replied Ok and that was that.  Did she ask what was upsetting me?  No. I have got to find new friends. Oh and Billie I have said something to my mom about staying, but she is uncomfortable with giving David meds and the thought that he uses a urinal so she is not an option.  My other siblings live hours away and honestly my brother and youngest sister have not even met David and my other sisthad lives several hours away and has young children, a teaching job and a military officer as a husband so her plate is full.  I don't have any respite.  If we get to the point of bringing in hospice I will get a little break.  Good thing I am only 42.  This is taking a lot out of me emotionally and physically. 

so called friends

Definitely time for new friends! It amazes me that someone would think you have time to do her taxes with everything else that's going on in your life. That's just shameful. I told someone who I *thought* was a very close friend about my husband's cancer just after he was diagnosed. Never heard from her again. That was April of last year. I guess people just don't know what to say, I don't know. It makes me sad.

I wish there was a way for you to get a break, I can't imagine the strain this is putting on you.

VivianLee5689 said:

Thanks everyone

Thank you everyone.  For those who don't know we live in Versailles (at least for the time being). We still don't know if the bank is going to foreclose on us.  At least the sun is shining today, which is helping my mood.  I am sorry I have whined so much lately.  It is cathartic for me.  I don't want to take my frustration about on David so it is nice to have friends who aren't judging me, but have my back.  I tell David several times a week that CSN has been the one place where I feel safe and loved.  If he hadn't had BOT cancer first I would have no one.  So as weird as this sounds I thank God they found that cancer first. 

I understand

Vivian,

 

I can understand a little with the running away part.  I feel that way about taking care of dad.  I walk the neighbors dogs every day and sometime I stay over there a little longer then I should, just so I can get away.  When I listen to how you describe things I think about my mom.  She has nobody but me.  Her sister only calls every couple of monthes and then blames her for the way dad is now.  Her friend would be there if we called her and dad's family could care less. 

She tells me she imagines running away all the time.  Don't ever feel guilty about that.  You are an angel to David and to us.  Please vent to us all the time. I know I have done my share over the last couple of years. 

 

Hugs,

Katt

 

cureitall66 said:

Run, Run, Run away...

Well I wish I had some great words to say to take this all away for you. I know it's hard feeling so alone.. like no one cares about the part you are doing...but, know that David cares for the part you are taking in all of this. Imagine how lost he would be without you there. I couldn't imagine him or anyone dealing with this beast to be alone in any way. It's tough. That's all there is to it. We will never know why we seem to be the chosen ones to take on such heavy burdens, God must have known we could do it.

With all that you have been given on your already full plate, I wouldn't expect you to be chipper and happy. Your feelings are purely normal for what's going on. The only thing you can do is hold tight to the times you have with David right now. Don't let those "so-called" friends of yours make you think twice about what you're doing. I'm not saying you can't take time for yourself and that you don't have the right to feel like running away, but it is completely heartless for them to even pass that thought onto you.

I want to also direct you over to the left side of the screen that says "Cancer.org" in the blue area. They are a great Cancer Resource Network and offer many services that most don't know are available. I encourage you to check them out. They have day to day help along with transportation, financial and insurance needs, and help to find a local support group. Here is a number to help get you started 1-800-227-2345. Don't be afraid to call and ask for help.

I think of you and David often and keep you continuously in my prayers. Keep your chin up girl, you are doing well and David is proud to have you as his wife.

God Bless,

 

Cris

I'm always amazed out how strong women are...

I don't say this to put us guys down, or lessen our ability to care...but I just have to say I watched my brothers wife care for him as he slowly died of a cancerous brain tumor 16 months from dx.  My brother Dennis was only married to his wife (Laura) 13 months before he died...he loved her but being in business for himself and working all the hours he did, he just never got around to asking her.  Even though they had been together a few years, and even though she knew his outcome, he asked and she still said yes...then spent their time together helping him die.  There was no gtee he would die in less than 2 years, they said 2 - 5 years, yet she still married him.  Being they were both astute christians, they had not had intimate relations until they did marry, and that did not work out too well.  I am still amazed at this wonderful lady who married my brother and did what she did.  She misses him terribly even now 2 years later.....I mean the stuff he went through. 

I watched my mother care for my father. They were married 50 years!  My father was diagnosed with acute Leukemia 2 months before my brother died.  My father died in May, just 3 months after my brother.  My mother was trying to care for dad and see her dying oldest son before he died, what a mess.  My wife often said "I don't konw how they do it" .....then....

October the same year my brohter and father died, I have to sit my wife down and tell her I have stage III cancer and all the odds that go with that.  She had what I would call a mini-melt down, I was so afraid for her and felt terrible to put this on her....we had five kids ages 2-13 at home, 4 in school and my tx center was 109 miles south of where we lived (tx center was in Boise) ....I did not have a clue what to expect, not even a hint....as the bottom fell out of me during tx's I watched in awe as my wife juggled the 2 dozen trips with five kids in tow to take care of me, the house, the kids, the kids school work, the bills (I handle the finances 90 pct of the time)....she would cook 20 meals and freeze them, make her way to me with kids in tow, cram us all in a 24 foot RV and made that home to us and made sure I was cared for...when my wife had to go home for a week, my 13 year old daughter stayed with me in the RV and made sure I was fed, took my medicines and got me up for rads and even stood over me as I was terribly sick a few times and cleaned me up!! 

Whatever God gave to a women I will never know...but it must be top secret bc to do all those things under that amount of pressure...is a true gift from the very God of love.

Not to be mean to your friends, put they are just not as fortunate to found love as you have Vivian...and quite frankly it may just be the exact place you are to be for you and David...

I am sorry for what you have endured, but reading your posts, seeing your love and knowing how the women in my life (Mom, sister-inlaw and my own wife) handled the situations, I see so much of you in them as well.......you truly are a special gift from God...i would venture to say a women's love is the absolute best and solid gift from God a man could ever hope to know.

 

Praying for you and David Vivian ...it's all I got, but I'm praying.

Best,

Tim