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Stir crazy and love starved

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am having a hard time trying to stay chipper and hopeful.  I have been stuck in the house for two weeks with the exception of the one doctor's appointment and chemotherapy.  We don't have company other than David's mom and we don't want her to have to come out everyday since she hasn't been a widow much longer than I've been dealing with David's cancer.  His mom is such an angel, but she lived the life I am living now for almost three years and she really needs a break.  I want her to be able to see David and enjoy him, but not have to be his caretaker.  We don't really have any family stepping up to the plate to relieve me, so I am by myself a lot.  I know realistically that everything that David requires scares people, but it would be nice if I had company some.  He sleeps the majority of the day and it leaves me by myself.  When he is awake it seems like non-stop caretending and I find myself feeling starved for affection.  I realized today that it has been over six months since my husband kissed me and five since he even hugged me.  This is really difficult.  Most of my friends think that I should just get out, they think he had to know he was sick and it's not fair that I have to give up everything to take care of him.  98% of the time I think that is hogwash, but 2% of the time I just want to run away.

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

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's picture
wolfen
Posts: 1213
Joined: Apr 2009

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

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

"staying chipper"....People just living mundane lives aren't chipper every day....and you have been 24/7 care giver for months with few breaks.  The only thing I can suggest is that when David is sleeping, that you just get out and walk the dog...the walking, the fresh air, the appreciation of the pup....will at least get you out for 30 minutes or so, not much, I know...but something.

I like what Wolfen says....she's a wise woman, I can tell!!  I'm shocked at what your friends said...it's so frigging cold!!  I'm mind-boggled by that whole way of thinking.  What a compassionate bunch they must be! 

You've gone thru these feeling before, and come out the other side of them....the sun will shine, and the air will warm up...and you'll feel lighter again. 

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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. 

yensid683
Posts: 242
Joined: Apr 2012

Is what we signed up for when we said "I do", and for my wife (my sainted caregiver) she lived the same life that you are now, but fortunately my dx is not as severe as your David's.  I'd say you're stepping up well for the 'or worse' segment.

I saw the toll that my illness was taking on her, and despite recovering and getting back to my life, she still worries.  She never shared her angst with me and let it eat away inside of her, so I would tell you that talking with David is important, even if you don't want to burden him with your concerns.  You're not saving him from worry, my wife added to my issues by not sharing with me.

I can understand the disorientation that your friends and family have about David's disease.  I recently learned that my ex-wife was dx with metastatic breast cancer, involving the bones in her left arm.  She's a physician as well and when she sent me an email about it, I was at a loss for words when it came to responding to her, and I'm a cancer survivor!  I had no idea of what to say to her so I let her know that it is scary as hell for the lay person, I can only imagine what it would be like for a physician who knows more than we ever will. 

I was in Louisville earlier this week and I recall reading that you're in Kentucky somewhere and thought about you and David, and offered up a prayer that God gives you both the strength to handle this heavy burden.

God never gives us more than we can handle.... 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

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

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

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.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Please please please call Hospice!  Respite is what they are there for. Believe me, you are way past the point at which you should call hospice.  Hospice does not mean that someone is at the point of death. They can help you now.

You are both in my thoughts.

Deb

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Stir Crazy... with Gene Wilder and Richard Pryor. 

Vivian,

I read your post and my heart breaks for you. Being on the cancer side of the equation, I cannot truly imagine being on the caretaker side of the equation. I truly appreciate you sharing your feelings as it gives me insight to what Marci may experience as my caretaker. If I may be so bold.... if your friends are saying the things they are saying, I have to doubt their friendship. Personally, if I knew that cancer was in my foreseeable future, I wouldn't bring someone into the picture to suffer along with me. I can't imagine, based on what I've read in your posts, that David knew of his fate. I've been told you find out who your friends are when cancer comes a calling. It's definitely true. 

Our journey is just getting started and we have no way to know what the future holds. Much like you and David, Marci and I have been together a little over two short years. She knew of my cardiac issues. Up until this fall I was fine physically. Then, October comes and WHAM! Heart attack. In reality, just a bump in the road. It could have been a lot worse but yet again I came away relatively unscathed.  I didn't even suspect cancer until the second round of antibiotics didn't work in November. Heck, when I knew it was cancer, I was thinking lymphoma or the like. I never even heard of squamous cell carcinoma! 

So here we sit, about to embark to who knows where. She didn't ask for this. I certainly didn't ask for this. I know you and David didn't ask nor were anticipating this. Many say to me to focus on beating the beast and getting well but I cannot help but be concerned for my Marcia knowing what I know at this point about the journey. I personally can't imagine what it will be like to be so sick that I cannot hold her or kiss her or make love to her. It saddens me to no end that she will have to endure that and see me get so ill. The helplessness one must feel as a caretaker again, is unimaginable. As much as I've read and learned and as much as we've spoken about what's coming, until we're in the midst of the battle, we won't really know.

I don't have any real words of wisdom Vivian. I do have prayer and positive thoughts that I will send your way. If David is sleeping as much as he is, take those times to do something for you. Go out for a walk or to the store. Buy something for yourself or do anything that brings some normalcy to your life if even for a brief moment in time. A little self indulgence is warranted until such difficult circumstances. I know I will encourage Marci to do things for herself. Her health and well being are paramount for me. I will need her yes, but she won't be helpful if she doesn't take care of herself. I'm truly Ok with whatever fate God has in store for me but I want her to be Ok too and will do whatever I can to make sure that happens. 

Blessings, positive thoughts, prayers and healing to you and David....

"T"

 

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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. 

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

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

 

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I can only imagine how hard this is for you. And it is not wrong if sometimes you just want to run away. It is completely normal to feel that way. It is hard already since some friends turn their back on you... When I had my baby it was hard sometimes in the beginning when she was crying and leaving me sleepless - so sometimes it came to me that I just wanted to run too. I wanted to say that it is ok if you can take a break from all this and at least go for a walk.

I am thinking about both of you and strongly praying to God that good times are just around the corner, so that you can both have some quality time together.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

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

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

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

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Vivian,

I know how hard this has been from reading your notes but there are a number of suggestions, good suggestions, maybe too many, that are overloading your senses. But given your circumstances, it just seems you are IT. All other close resources are not able/willing to help. I fear so much you feel trapped and will get sucked down and not be any good to anyone, including yourself.

PLEASE PLEASE scan those suggestions, grab one that feels about the right size, and REACH OUT. Cyber friends are great and all but in the end you are dealing with REALITY and virtual friends are not able to give you the necessary support you need now. There must be some local resource who can help at least a couple hours here and there for respite. Take that time to seek out a sound plan to keep you well.

At the risk of throwing in yet another suggestion, how about CSNers take up a collection to help you pay a local college kid or anyone who can sit with David while you get a break and a clearer head. It will only do you both GOOD. If you are open to that and find someone, give me your paypal and I will gladly donate.  don

 

 

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