Breaking Out of Prison | Caregiver Action Network

Breaking Out of Prison

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Breaking Out of Prison

I've vented about various aspects of my situation and some have offered some great advice.  Well, I'm finally ready to move beyond that basic advice and probe one particular aspect further.  First, some background.

I have been caring for my wife for several years.  She has stage 4 metastatic breast cancer.  She was not supposed to make it to last summer, but she is still hanging on, even fighting off cancer in her cranial fluid many months ago.  She still has her mind in spite of years of chemo and many rounds of radiation, some to her brain.  Her memory is slipping and she has other mental issues, but all-in-all she has most of her faculties.  All that is great.  So what's the problem?

Well, there are a few but I'm here to take on one in particular.

Every web site, every book, every article and pamphlet says the same thing.  Make time for yourself.  

Well, just how does one do that when you get no cooperation and no time?

We have a two friends that will sit with my wife for an hour or more so I can actually go into work when I need to for meetings.  

One of them is caring for her husband who has dementia and many other health issues.  Her visits with my wife is her break, but she can't do that often and she can't go for long.

The other lives two hours away, works, and is dealing with her own issues.  Obviously, she can't com every often either.

OK, so there are services and day care services, right?  Well, yeah, if you can use them.  And this is where my problem comes in.

First, my wife wants no strangers in the house.  That means no home health, no home visiitng caregiviers, no housekeeping, nothing.  I do it all.  Always.  No matter what.

As for day care, hobbies, clubs, or anything else, that's a no-go as well.  There is always some excuse.  She knows no one there.  She doesn't know what she'll do there.  What if she starts feeling bad?  And then there is the classic, "Oh, I'm not that bad.  I can just sit here by myself for a while."  Well, no she can't.  Not with her terrible short-term memory and propensity for being disctracted to the point of obsession with just about anything.  What if that happens with something on the stove or something worse.

So how do you deal with that?  When your ONLY breaks are either going to work or getting to lean back and close your eyes in a waiting room while waiting for a test they won't let you accompany your charge to?  How do you find time for yourself when there is no break and your charge will not do anything or make any compromise to accommodate creating one?


KarenS's picture
Smedley you just answered my question...

Smedley you just answered my question about your wife's diagnoses I posted on another topic.  You must have ESP.  I don't know how direct you are, or if your wife listens.  Do you tell her exactly how you feel... about everything?  Are you direct with her?  I am very honest about my feelings to my husband.  He hears me, but ignors me.  Fact is he became tired of hearing after once.  If it's something he doesn't want to hear, he doesn't even acknowledge it.  

Is your wife able to get out a little with you?  If so, get someone in to clean while you're both out at a bookstore or some place relaxing.  It doesn't sound like much, but it's one less thing you have to do.  Insist on it...  don't give her the option.  Tell her you can't do it all.  You're human, and we all need a break. 

Do you not have any family where you live?  Does she not have friends?  She's worried about staying somewhere on her own alone with strangers.  What about a companion...  female person who could take her out somewhere.  I'm not sure if you would have to hire someone, but maybe there is someone in the area that could do as a volunteer.  It may be uncomfortable for her at first, but she may make a new friend.  Or...  hey, if she needs someone besides you to talk about her feelings to maybe a life coach.  Listen to me, I couldn't drag mine to one if I could.  He won't talk to anyone.  Ugh!

Maybe you can google someone in your area, that could come over first to talk to her.  Or, email...  facebook with her.  To get her to open up.  She may have feelings that she won't discuss with you... fears, and such.  My spouse is as yours...  they said months, years but not decades.  He's holding his own with chemo every 3 weeks indifinately.  He's had lung cancer 6 years ago, and it came back spreaded to outside lining of lung 1 1/2 years.  No surgery or cure.  He will go out, and do things but most of the time he'll want to stay home and is tired out.  Plus he's type A exsplosive at times...  split personality... he can be nice.  Controlling comes to mind.

It's good to chat here with others that have similar feelings, and problems.  However, it's somewhat confined to what you say, or want seen.  Not very private.  I gave up my job, because he wanted someone going to all his appointments and staying with him.  I have to say I feel like a prisoner at times..  being housebound.  I could get out, but then I have no friends here so I'd be loning it.  I do go to the bookstore, or shopping which gets me out...  and I make sure I get a massage once or twice a month.  Helps with the tension and stress.  We all need to relax some, and it's hard...  especially if you've been going through this for some time. 

There must be something you can do to get a break.  It's unhealthy for us all to not have a rest.  I'm going to look up some things tomorrow.  It'll give me something to do.  What state do you live in?  If you want I can check out services in your area.  It's midnight here, so I'm going to let the dog out and hit the sack.  Back at ya tomorrow...  hopefully with some answers to help.


Hi Karen.

Hi Karen.

We used to talk about everything.  Now we can hardly talk about anything.  Almost any and everything makes her angry or depressed or sets her off on a crying jag broaching sensitive subjects is pretty much pointless.  Nothing gets resolved.

And yes, she can usually get out of the house and we do.  But it is seldome to do anything fun and relaxing for both of us.  It is usually for some kind of errand or chore.  I have tried to get her to do other things, but her condition is not suited to going to movies or concerts, we can't go very far since she can't be in a car too long, and she just really doesn't want to push that envelope.  And having someone come in while we are out?  Well, that's just not gonna happen.

Family nearby?  One daughter who comes by when she can, but that is not terribly reliable and, to be honest, she is not terribly helpful.  On the other hand, if she is sitting with my wife, then I can do chores and other stuff that usually gets put off.  The rest of her family is a long way off.  They visit periodically but it is difficult for them.

I have brought up counseling to her either to just have someone to talk to or to actually try to work through some of her (and our) issues.  She has softened on that a bit, but still no acceptance of the idea.  Otherwise, some stranger coming over or her going to voisit with some stranger, is not something she is willing to accept.  At least not yet.  She has never had a large circle of friends or activities.  Work was her outlet and social circle.  Of course, that's gone now so instead of running that show, she has not altered her lifestyle or way of thinking to change to a different phase of life.  Instead, she has changed our lives to more closely match her old work environments and methods.  While productive for what hse did, it is not much for running a household and supporting a marriage.  Of course, when trying to talk about that she denies this has happened and gets defensive and tearful.

I have Googled and reached out to local organizations.  Even had some things set up to do and try, but my job and my wife's actions and appointments, and attitude have managed to squash each and every one.  I know it was not ntentional, but it just works out that way in most cases.  In others, she makes plans and decisions withut consulting me or taking my concerns into consideration and so I have to adapt.

So overall, I'm stuck.  In many ways it sounds like we are in very similar situations.  Luckily I have a job that lets me work from home and I have very adaptable vacation and personal time options.  It can be difficult to juggle appointments around deadlines, meetngs, and must-do tasks, but it is working so far and the people I work with and for are tremendous.  Very understanding and accommodating.  I could not be more fortunate in that regard.

Thanks for your post and suggestions.


KarenS's picture
I just wrote the longest reply...

I just lost the longest reply to you Smedley, and lost it all.  This is the third time on this website it's happened.  Ugh!  I'll try to recreate it on Word first.  Be back shortly.

KarenS's picture
I need to read all posts first...

Smedley (and everyone else too),

It's very hard to keep everyone's posts of what's going on with them start on these forums.  I wish they could also sort by user, so you could read all of their post together.  Also, I can't figure out again how to start a new post subject.  Some of the subjects aren't specific to everyone's needs, and they are so many seperate ones.  I want to start one called "SPOUSE CAREGIVERS", and talk about whatever on it that relates to spouses. 

Also, before I reply to your post Smedley I printed out all your posts and others I will reply to after reading the whole story.  I feel like I may be asking questions that have already been posted, and don't want to seem disinterested or uncaring that I don't remember...  because I do. 

Okay, well I have some reading to do and will reply post in the next hour or so.


KarenS's picture
This is a long one Smedley...
I printed all your comments from different forums, so I get your whole story.  I don’t consider what you say as venting, though I know most of us feel that we are.  Venting just sounds so negative, as we may feel.  It’s more like we’re finally getting our feelings out to others that have similar circumstances, and who are not only willing to listen but understand from our view.  The view from the caregiving spouse. 
All those websites and books say "make time for yourself" for a reason.  If you don’t you’ll run yourself down physically.  It’s bad enough we have our emotions to deal with, let alone not living.  Or maybe I should say feeling like we’re not living anymore.  Feeling like we no longer have a relationship or marriage, and are just there to service the needs of another.  One-sided does not fulfill a healthy persons needs. 
Us all being healthy, we are dragged with our terminally ill loved one down the path of death.  After they die we have a whole other set of issues, and feelings to go through.  A different kind of emptiness, and for some maybe a sense of freedom which brings guilt.  It’s a no win, at least for some time. 
Your wife, as my husband both are terminally ill with no cure.  Ultimately they will die as we all will, but their time will come sooner.  Unless we have heart attacks first from all the stress it causes us.   Both of them seem to be hanging in there, and are strong considering their terminal illness.  That must mean we’re good caregivers.  Doctors don’t always have the answers.  Their info is based on clinical studies, and everyone reacts differently to treatments. 
Good for them, but what about us.  There isn’t much help for caregivers.  Far less considering all we go through.  Oncologists are there to treat their patient, not us.  Most patients seem to avoid talking to their spouses about their feelings, let alone anyone else.  While we want, and need to.  We mourn the death of the person before they actually die.  It’s the death of the person we knew, and the shell they’ve become.  Or is it really the hold on our lives, not theirs that we mourn.  Because our lives have changed dramatically from their illness, and we're just being dragged along on this unpleasant journey.
Funny you say you not liking being told your strong.  I hate to hear that too.  I see many men and feel women both feel they don’t get the support needed.  Men more so, maybe because women are still considered the weaker sex?  Interesting.  Yet women are usually the caretakers, mostly because of the mothering or that men die younger.  You’ve heard the old saying “Men are hunters and women are gatherers”. 
I actually asked the Oncologist could he give my husband a happy pill.   He just looked at me dumb founded, and brushed it off.  Maybe he thought I was kidding.  I said “I’m serious”.  I went to a Cardiologist because I was having chest pains, just to rule out anything, as I’ll be 60 this year and while I’m pretty healthy you never know.  Treadmill stress test, and all came out good.  So I said to him, it’s probably anxiety.  He's like, from what?  Now my husbands also his patient, so I say I don’t know…  maybe it’s his terminal cancer, the type A explosive unpredictable behavior, or the sexless marriage.  He immediately changed the subject.  That's why I think we need to talk to a life coach, or phycologist.  By we, I mean the caretaker and ill one. 
I actually did see a life coach the first time around.  She was VERY good.  Someone like her would also be good for your wife to see.  An associate who had cancer went to her while he was going through it.   I just emailed her to see if she’s still working.  She was in Scottsdale.  Here's her book with website and info:
I too made sure much was taken care of…  a trust, down-sized home so I would be able to manage once alone, purchased burial plot, and discussed the arrangements he desired.  Spouses don’t realize all one has to go through or deal with let alone the grieving after death.  I have been through it with a fiancé that died from cancer so it’s like déjà vu.
Yes, I too feel isolation and guilt.  I think those feelings are natural.  We don’t have control of our lives, our wants, or needs.  We are built around the sick ones needs, and ours seem to be meaningless or unrecognized.  We suppress them.  With that come all kinds of mixed feelings… sadness, helplessness, hurt, fear, anger, loneliness, emptiness, mental and physical exhaustion...   you name it.
We tippy-toe around them.  Oh, their feelings will be hurt, or they don't want to hear it.  Where is our voice, our feelings in this all.  We have none?  It's extremely inconsiderate not to talk or care about our feelings.  I am so disappointed in the lack of actions from our ill spouses.  I can honestly say I would never treat another in that manner.  It's selfish!
Why doesn't she want strangers in the house?  What is her concern, and who says her voice is the only one heard.  If you tell her someone's coming to clean next week, because you no longer can physically do it all what's she going to do to stop it.  
Your wife cries, or denies....  my husband screams, ignores, or puts blame on me.   I think they need to open their eyes and take a good look.  Would it not make sense to make it easier on us, being all we too are going through.  I mean have a heart people.  heart
KarenS's picture

P.S.  You're posts are at 4am.  I hope you are getting sleep, because that's early.  wink

ML's picture
How DO you get breaks?


I appreciate the comments about getting breaks. My mom lives with my partner and me in a very small house. She always presents as doing very well, unless you know she is making it all up as she goes along. She knows she can't live alone, but thinks she can be left alone. She has a hearing loss and doesnt want to socialize in groups. My partner has early dementia, but is mostly still taking care of herslef and can help with mom some. But when we went to a play and left mom with my daughter, whom she loves, she had a fit about not needing a babysitter. She also wanted to know why we couldnt get another ticket for her.

One idea, which I have not tried out, is to get a trained caretaker who will be willing to "pose" as a housecleaner. Especially if she would involve mom in the 'cleaning'. Then maybe I could just happen to have to run to the store.

Yesterday Mom and Trish went walking in the mall. But they came home with a bag of See's candy! I love them both very much and am accepting that this is where my life is now, but I often don't know the best way to handle a given situation, or how to get the respite I sometines desparetly need.

Thanks for listening. ML

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