Reality Check Needed

[looneytunes]

I have been watching hubby decline over the past 2 years.  He has now gotten to the point he can't walk very far due to shortness of breath or leg pain.  We have been through 5 rounds of sepsis with some pretty nasty bacterial infections in his bloodstream.  Several unexplained seizures during dialysis.  (home hemo with NxStage).  One cardiac event where I got to practice my CPR training on him before calling 911.  And bazillions of other miscellaneous crises along the way. 

We live on a farm and raise beef cattle and most of the harder work has fallen to me because he is just not able most days to do much.  And things are now starting to deteriorate rapidly around here.   I have walked a fine line for a long time to keep from making him feel useless but now I'm to the end of my rope.  I know a lot of you have been where I am now.   So...I'm asking all of you...what do I do now?  Throw in the towel?  Suck it up and keep on going? 

I have tried to talk with him about reality.  He admits his inability to take care of the farm though he doesn't like to talk about it.  He does not want to sell the cattle.  He does not want to hire someone to help me (though he agreed to this a few months ago and didn't do it).   He does not want to move to to a place where I would be more capable of taking care of just a house and yard and not the acres and acres we have.  There is getting to be a lot of tension between us over this and I am at a loss as to what to do.  I am strong and able to do a lot but this is not a one person operation and I am exhausted most of the time. 

I know there are no easy answers to all this.  But, it helps to "talk" about it.  Thanks for "listening".     My love to you all. 

[MooseMom]

Of course he doesn't want to talk about it.  Naturally he doesn't want to admit that his life has changed and his illness has been the catalyst for that.  He hasn't asked for this.  He hasn't wanted to leave a life he loves.  He wants to keep everything the way it has always been.  To be forced to abandon your lifestyle and your dreams because your kidneys don't work anymore is a terrible, terrible thing.  Many of us dream of living the sort of life that you live...out on a farm, free from the constraints of city life...a life synonymous with "freedom" and "independence" and all of those elements of the American Dream.  If he doesn't have to face the changes forced upon him, then he won't.

But life isn't fair.

With things the way they are right now, what would you like to see happen?  With the constraints and difficulties that come with living with kidney failure, what would be a lifestyle that would work for YOU?  Figure that out, and start there.  Would a smaller farm be the answer?  Do you want to move to a town that has better medical facilities?  Do you still want to work on a farm at all? 

What do you mean by "throwing in the towel"?  You don't necessarily have to "give up", but you do need to make changes.  You can't "suck it up" and keep going like you have.  Why doesn't he want you to hire someone to help you?  There are so many people who would be grateful for the employment.  Is it a pride thing?  Is it the admission that he isn't able to do what he used to be able to do?  Does he have to be the one to hire help?  Is this something you can do?

He doesn't want to confront his reality because it is too painful for him to do so.  Oh man, I really understand that.  But that's not helpful to you.  You need to make adjustments so that you will be more available to help him.  You have a reality, too, and it is just as important as his.

Don't "throw in the towel" and don't "just suck it up."  Do something in-between.  Find a lifestyle that you both can live with.  I don't think the lifestyle you have right now is the answer for either for you.

Please keep us posted on what the two of you choose to do.  This is a situation that so many people face.  I hope you together can come up with some answers.

[jbeany]

  He does not want to hire someone to help me (though he agreed to this a few months ago and didn't do it). 

Can you hire someone yourself?  Or at least delegate finding the right person to a fellow farmer/friend who could find you someone who knows what to do.  I think, ideally, it would be a young man who could be told that part of his job is to seek approval and guidance from your hubby in all things.  That way, hubby can feel involved as manager, without doing any physical work.  Phrased as "Honey, this kid really needs a job and some training and experience; we could help him out." might sweeten the bitter pill for your husband while sweetening your life a bit, too. 

Just my idea for a little spin...

[silverhead]

I like JBEANY's response.........

[MooseMom]

I like JBEANY's response.........

I do, too.  I think that would be very doable, very considerate. 

[willowtreewren]

Jbeany should be working as a top notch diplomat!

What a good idea. Looney, that could be doable and a tremendous relief for you. If something doesn't change, YOU are going to lose your health, too.

 

Aleta

[paris]

Jbeany is so smart!   Also, it is summer and there are lots of teenagers looking for work that might love working on a farm.  My husband worked on a horse farm when he was in high school.  It taught him valuable lessons. 

You have been working very hard for quite some time.  I can't imagine how worn out you are.  And your husband is probably feeling quilty that this has all fallen on you.    Keep venting -- you know we love you.   

[del]

I like jbeany's suggestion as well.  Still gives hubby his dignity and he will feel like he is helping.

[RichardMEL]

I too like jbeany's suggestion - a very good response.

However I was to go back to the situation and response as though that suggestion wasn't there.

The way I see it, or feel anyway, is that there are more important things than the farm. That's the health and wellbeing of you *BOTH* - not just him, not just you - but both of you. The fact that the whole issue is causing tension is just adding to how miserable it is for you both trying to find a way through that satisfies everyone - and short of jb's idea - there doesn't seem an easy way or middle ground to achieve that - which is the hard part.

Remember also that all the extra time and effoert you are taking looking after the farm is affecting your ability to not only look after him, but also (and most importantly!) yourself!! That matters too!

I understand he doesn't want to face his own frailty but by the same token you can't just take on everything including his situation and expect to shoulder it alone - that's hardly fair on you.

If he's "no" too all the suggestions you've made then what, if any, does he suggest?

Maybe it's time to make it clear that you can't handle the responsibility of him and the farm any further and something has to give - and really that should be the farm.

Incidently the thought also occurs to me since you mentioned those bad infections and stuff - that being around all those animals and stuff might not exactly be the best environment for him anyway - infection wise I mean. Just a thought.

At the end of the day the priority should be the two of you. the farm is a posession when it comes down to it. Yes, it's also a lifestyle, and the cattle provide income and whatever else, but your lives are far more valuable and sometimes drastic and difficult steps need to be taken to protect these things.

my best wishes - this is so difficult I can but imagine.

[looneytunes]

My thanks to all of you for caring and responding.  I also love Jbeany's suggestion and will try this at the earliest opportunity.   I don't want hubby to give up trying to do what he CAN do and this may be a great way to give him a new purpose.   To keep his pride and feel like he is in control of his life is so important.

He has no suggestions at all.  Just a lot of "no" answers to mine.  I have told him that I am no longer willing or able to take most of the load and am ready to go into melt-down.   And really, something does have to change.  My hope is that if we can get some help to provide more of the muscle needed, he can supervise and then use what energy he has to do things he wants to do rather than trying to do things he really is not able to do and wear himself (and me) out.  While funds are limited to pay hired help, if we are to keep things going, we have to have some help. 

I also realize that this solution may be short term (in the grand scheme of things) and at some point, moving closer to medical care may be necessary.   We have talked about this several times (most noteably after one of my wild 100 miles drives to the hospital) but once the crisis is passed, it is not a popular topic of conversation.  But, if he continues to decline at the same pace, that may be just a couple of years down the road.

I try to do something each day to give myself a little peace.  Sometimes it's walking (like I NEED the exercise  ) or reading or going out for a little retail therapy or a new haircut.  But, given the rapid onset of the sepsis episodes, I am no longer comfortable being away from home for more than an hour.  He can go from "fine" to "non-responsive" in about an hour.  But I am always on the lookout for things to do that take my mind off the problems and focus it on something pleasant for a while. 

 

[boswife]

I just pourd my guts out to you and it zipped away somehow...  sooooooo, i'll just send some love and do  know that i feel deeply for what your going through..  I hope something turns for you and you get some strength to do what needs doen...   

[Poppylicious]

Oh looney, I too am joining the I ♥ jbeany's Suggestion Club and I really hope that you can come to a compromise and get the help you need.

*huggles*

[billybags]

Looney, I really feel for you and | can imagine how tired and frustrated you are with it all. On one hand you don't want to give the farm up because it would throw your hubby into more despair, its a man thing and that is not good, but on the other hand you cannot manage it on your own, as well as looking after your husband, which I find a full time job on its own. Just think about it, who would look after him if any thing should happen to you God forbid. We as carers run our selves ragged and there comes a time when we all say "Ive had enough"  You must insist that you need to have some help, even if it is part time. Do they do a student farm scheme where you live? Looney get some help for your own sanity.

[Jean]

Looney, I too like jbeanys response the best. I have a husband just like yours, and mine is not even sick. Refuses to discuss " Plan B" and depends on me so much, I often ask him what are you going to do when I die? His response is, Honey, we are going to die together. How is that for not facing reality? You my dear have a current and terrible situation. Sometimes you have no choice but to " take the bull by the horns". Getting an hour to yourself is only a short term option. If he will not make any choices, then you will have to do it for him. He will protest of course, and then is when you say, " And your idea is??? " He has none. Neither does mine. I wish you all the luck in the world and hope you can overcome this problem.

[boswife]

ewe jean, talk about reality check.  I need one as well.  Im the "well" one here and i believe my head is in the same place as your hubbys is    I say the same thing about "we'll die together".  I just cant think about it.  Makes me feel week not empowered..  I dont know how to be 'calm' or sane about that thought 

[texasstyle]

I know how you're feeling not that makes it any better, but I "get it". I think all us caregivers do. No one understands how much of it is on "us" I imagine there spme people who are on dialysis who doing relativly well maybe even working and traveling a lot. But we're not in that kind of situation. I see a serious decline and I'm starting to get my things in order. Truth is, with ill husbands like ours (yours has realy been through an incredible amount) we have to think thwat. I think the moving is a good idea but that probably would make him feel like he is a invalid or "less than". Not that he is or even someone handicapped but it must be hard to not be able to do the things you used and WANT to do. There are no easy answers for anything is there? If only...Talk it, vent it, do what you have to do.Life doesn't seem fair on many days.

[RichardMEL]

LT - just want to give you *hugs* - it must be so tough for you. I'm so glad, though, that you're trying to find time and things for yourself every day - the wellbeing of the caregiver is very important.

my best wishes and thoughts to you - and to all our caregivers !!! I've not been one, nor have I really had one, but just reading here makes me very aware of many of the issues you guys go through loving those of us who are patients and I'm sure many of us, wrapped up as we are in our own crap, fail to always realise or appreciate just how tough it is for those around us who care, yet are quite helpless at times.

 

[looneytunes]

Thanks you all for your words of enouragement and hugs.   It helps to feel the support of all of you.   

Over the past few days we have talked about selling the cattle, hiring help (couched in JB's diplomatic terms) and moving to a smaller property where it would be less for us to take care of.  All of these are meeting a stone wall.  His ideas?  Well.....None.    It's very frustrating.   While he agrees that things are deteriorating, he won't commit to doing anything about it.  It's like he just wants to live in a fantasy world where his kidneys will start functioning again and he will become the "hoss" he used to be.   Oh how I'd love for that to happen but that's not reality. 

Yesterday I discovered an old cistern (water well) had caved in and we lost a calf in it.  I sat and cried.  Not only is that a loss of income, it's another priority that has to be taken care of because it's now a dangerous situation.  So, today, I am going to have to find a way to cover it or fill it or something. 

I hate to whine about things but so much appreciate being able to vent here.  You all are the best! 

[willowtreewren]

Maybe this latest incident will be enough to push hubby over to allowing you to hire some "temporary" help!

With everything else you have to do, you'll need some extra "hands" to get the cistern taken care of. It is actually economical to hire someone to help in order NOT to lose any more income!

Thinking of you Looney! 

Aleta

[RichardMEL]

I'm upset for the poor calf (((((((((((

[del]

You are not whining!!  You need some help with running things or you are not going to be able to run the farm or be a caregiver to your hubby (you will need somebody to look after you!!).  Hope you find some compromise with your hubby soon.   

[boswife]

how sad looneytoons, for you and the calf and your hubby too actually.  Do you let your hubby know the toll it's taking on you?  Has he seen you cry in dispare.  I understand his health hurts him mentaly as well, but something has to wake him up as to "the reality" of what needs to be done.  Softly as can be, but something has to give.  I was near breakdown myself, but for us, once started D our lives turned upward enough to handle it, but if not, i would be gone before him.  Think about it lady.  Your important too... I wish you well..

[looneytunes]

It's been a few days since my post about "reality" and I thank everyone for the support and replies.  The cistern has been filled in, we called a guy to haul in dirt and a backhoe to take care of that problem.  Still no resolution to any of the others though.  I have been asking around about a part time farm hand but so far no luck.  One would think with all the job loss in this country, there would be someone out there that wanted some part time work.  And surely, I will find someone. 

We did have some discussion about moving to a more manageable place and hubby agrees at some point it will probably have to happen.  I just hope it's before he is no longer able to enjoy a slower paced lifestyle and before I wear out. 

Today we had another round of roto-rooting his graft.  More blockages in his chest cleared and some clotting removed.  Another 200 mile round trip and we're both tired.   This is the 4th time since it was put in 7 months ago.  I guess the vascular surgeon who put it in was 100% right when he said this would be an ongoing problem due to the poor condition of hubbys arteries and veins. 

[willowtreewren]

Oh, many 

I know that when people say to me, "I don't know how you do it." I only start to wonder about it myself.

BUT, I don't know how you do it. 

I hope things can be resolved soon, either a helping "hand" or a move or something else.

 

Aleta

[lmunchkin]

Looney, what can I say?  This disease is draining physically, emotionaly, financially and you name it, not only for the one's who have it but the one's who don't! If you want, I can PM you for any kind of encouragement that you may need.  I really don't have an answer to all this, but that you are NOT ALONE!

lmunchkin