Ups and Downs

[cariad]

MM, I can be an anxious one, too, but I think you have to give your husband more credit than this. First of all, I often found myself tensing up as soon as I saw the caller ID with the name of a transplant centre across the screen. It really does not matter how long you have been on the list - the call really, truly could come in at any time. It sounds to me like you're working at cross-purposes - he is trying to remain positive with a "this could be it" attitude, and you are focused on the what ifs. I read a good piece of advice once about keeping upbeat in life: don't rehearse being unhappy. You seem certain that you are going to decline before you get a transplant, but you could stay stable for a long time. You may not decline that much, either. I was not exactly skipping about once I hit a GFR below 15, but I most definitely had my great days, and some people feel fine at crazy-low GFRs.

I really do not see an end to this self-torture unless you start challenging your own assumptions. After a transplant, you will have to contend with "what if the transplant fails, what if I cannot tolerate the meds, what if I catch a deadly, communicable disease from the donor." There will never be a day where you will have no potential concern, there will only be the choice whether to dwell on it or not.

Have you asked yourself what his ideal reaction would be for your purposes? Because it sounds to me like your husband is doing what support people do - acknowledging your concern and reassuring you that he can handle it as it comes, but you do not believe him for some reason. Hon, I did this to Gwyn, too, and it was about as pointless an action as I've ever performed. I would ask him "What if you end up on dialysis?" and he eventually settled upon the answer of "then I'll do dialysis". So then I would respond "you have no idea what you're saying" and he would usually fall back on "it's not going to happen anyway". Looking back on it, I had no idea what I was saying, either. I would tell him 'dialysis is horrible' but to be fair, I had minimal experience on dialysis and I certainly could not even begin to guess how Gwyn's system would handle the process. I know you have the best of intentions, but to be brutally honest, both of us have sent the "Sweetie, I just don't think you have it in you" message to our husbands, and that cannot be a fun thing to hear. I would worry more that that would cause resentment rather than a disease that you cannot help having.

[MooseMom]

Cariad, you are mostly right, and I am glad you've set me straight.  I've thought about your post, and it occurs to me that there are actually two forces at work here, but first I have to explain something that happened 2 years ago.  I had to have a hysterectomy; my husband told his boss that he would need a couple of days off.  Bossman told him to do whatever he needed to do.  The plan had been to get home from the hospital and for a week have DH go to work for half the day and then come home in the afternoon.  That's all.  I didn't ask for nor expect much.  The day before my op, DH told me there were going to be layoffs at the city, and he panicked.  Bossman panicked and took it out on DH.  Long story short, DH was not allowed any time off after I came home.  I spend 11 hours a day at home by myself, driving myself to doctors' appointments which I was not supposed to have done.  I was left all alone the one and only time that I really needed someone to be with me, and I have never forgotten it and am very resentful of having to EVER rely on anyone EVER again to provide any care for me.  I know my husband felt like his job was on the line, and his job provides me with insurance; he was placed in a very difficult position.  The ironic thing was that I knew Bossman would never get rid of DH because DH makes Bossman look good.  So, what happens if I need DH to be my caregiver but Bossman puts him in a tough place again?  It's not that I don't trust my husband, rather, I don't trust outside forces and other people.  No one else gives a flying **** about my wellbeing, and I'm supposed to trust these people?  Really???  I KNOW you understand how one random comment or how one event can profoundly influence our world view...well, 2 years ago was my eye-opening circumstance.

Other forces at work...

1.  It takes courage to be hopeful.  Being hopeful opens yourself up to disappointment, and I loathe being disappointed, so to protect myself, I abandon all hope.  It's not meant to be self-torture, rather, self-preservation, but it does end up being self-torture.

2.  Anger.  I am angry that this has happened to me.  There is no purpose to this.  Every time I have tried to rejoin the world, I have some health crisis that  reminds me that my life is to be put on hold for now.  Each time I was confident enough to make commitments (like volunteering at the hospital or for literacy training), something has happened where I have had to tell people, "I'm so sorry, but I can't continue because of a health concern."  Yesterday I had a fight with my pharmacy because they would not refill a prescription that I had accidently let expire by 11 hours.  I resent it that so much of my energy is taken up by stuff that I didn't sign up for.  And I know that I am not the only one to feel this way; I know that I am very typical in this regard, but that doesn't make me feel better.  I am angry and resentful and frightened and it pisses me off that my husband seems to think this is all no big deal.  The man won't even get a flu shot because he doesn't like needles...  I'm just so furious.  I haven't been able to get over it, and that is the unbecoming truth.

[Red from Canada]

Moose Mom, I understand where you're coming from, but I really think your hubby is trying to reassure you.  Try not to put roadblocks in his way.  My wonderful husband of 42 years is now doing everything for me.  He says it's like a challenge and he enjoys it.  (Having me helpless)  He does cooking, cleaning, laundry and all the shopping and still treats me like a queen.  I know I am very fortunate, but when we were younger, it was the other way around.  maybe your husband would be every bit as good as mine.  I hope your anger subsides.  It is counterproductive. Lots of luck to you.

[MooseMom]

I hear ya, red, I really do.  "Roadblocks"...yep, I recognize those.  But since this is a thread for/about caregivers, I'd like to ask how you caregivers handle the anger expressed by your loved one?  I know that you did not sign up for this, but neither did the patient.  How does your loved one express his/her resentment, and how do you handle it?  What was it that helped to dissipate the resentment?  Was it anything you said or did, or did they just have to get over it on their own in their own time?

[Red from Canada]

Moose Mom, We have gone past being angry to acceptance of our lot.  I am fortunate in that except for the extreme fatigue, diabetes and heart problems, I really am feeling pretty good.  Reading how bad some people on this site have it, makes me feel grateful for every good thing in my life, most of all my Hubby.

[okarol]

This is a little off topic, but can someone tell me what DH stands for? I say it's designated hitter (baseball) and my sister says it's d!ckhead  - thanks!

[MooseMom]

"dear husband" 

[cariad]

Cariad, you are mostly right, and I am glad you've set me straight.  I've thought about your post, and it occurs to me that there are actually two forces at work here, but first I have to explain something that happened 2 years ago.  I had to have a hysterectomy; my husband told his boss that he would need a couple of days off.  Bossman told him to do whatever he needed to do.  The plan had been to get home from the hospital and for a week have DH go to work for half the day and then come home in the afternoon.  That's all.  I didn't ask for nor expect much.  The day before my op, DH told me there were going to be layoffs at the city, and he panicked.  Bossman panicked and took it out on DH.  Long story short, DH was not allowed any time off after I came home.  I spend 11 hours a day at home by myself, driving myself to doctors' appointments which I was not supposed to have done.  I was left all alone the one and only time that I really needed someone to be with me, and I have never forgotten it and am very resentful of having to EVER rely on anyone EVER again to provide any care for me.  I know my husband felt like his job was on the line, and his job provides me with insurance; he was placed in a very difficult position.  The ironic thing was that I knew Bossman would never get rid of DH because DH makes Bossman look good.  So, what happens if I need DH to be my caregiver but Bossman puts him in a tough place again?  It's not that I don't trust my husband, rather, I don't trust outside forces and other people.  No one else gives a flying **** about my wellbeing, and I'm supposed to trust these people?  Really???  I KNOW you understand how one random comment or how one event can profoundly influence our world view...well, 2 years ago was my eye-opening circumstance.

Other forces at work...

1.  It takes courage to be hopeful.  Being hopeful opens yourself up to disappointment, and I loathe being disappointed, so to protect myself, I abandon all hope.  It's not meant to be self-torture, rather, self-preservation, but it does end up being self-torture.

2.  Anger.  I am angry that this has happened to me.  There is no purpose to this.  Every time I have tried to rejoin the world, I have some health crisis that  reminds me that my life is to be put on hold for now.  Each time I was confident enough to make commitments (like volunteering at the hospital or for literacy training), something has happened where I have had to tell people, "I'm so sorry, but I can't continue because of a health concern."  Yesterday I had a fight with my pharmacy because they would not refill a prescription that I had accidently let expire by 11 hours.  I resent it that so much of my energy is taken up by stuff that I didn't sign up for.  And I know that I am not the only one to feel this way; I know that I am very typical in this regard, but that doesn't make me feel better.  I am angry and resentful and frightened and it pisses me off that my husband seems to think this is all no big deal.  The man won't even get a flu shot because he doesn't like needles...  I'm just so furious.  I haven't been able to get over it, and that is the unbecoming truth.

These are some excellent insights, MM. I do the pessimism bit, too, as a way to ward off disappointment. I don't do it with kidney failure. Not sure why. Maybe because kidney failure has always been there, though very much in the background. The only way I know to get over anger is to challenge your own assumptions, and even then, the anger may subside only to reappear later. It sounds really pedantic and obnoxious when someone tries to do this challenging for someone else, which is why I would really recommend looking at what you've written for yourself. Phrases like "every time" and "the one time" leap out at me as good starting points. Gwyn dd not exactly me knock me out with his support skills, especially early in our marriage. He is so much better now! He literally chased the owner of the company where he works around the office telling him that he was going to get insurance and he was going to get it now. Then Gwyn got word that our COBRA had been extended, to which he turned to the owner and said "I'll be paying 150% of the cost to the company - or rather you will" and immediately billed at $10/hour more to cover the difference. My husband is not a confrontational person. This is completely out of character for him, but he did it, because he knew it was what I would have done if I could have, and what I needed him to do. I am incredibly proud of him for that action, and I replay the conversation in my mind like some triumphant scene in a 'Norma Rae' style film. People can change, is my point.

I do know how seemingly small incidents can be writ large into one's own personality. I was overwhelmed with anger as a teenager. My mother's voice aggravated me. I had a decade of resentment built up, and no one the least bit interested in helping me through it. I would bring up hurtful moments from my childhood only to be told I was lying, I should be over it, I was 'living in the past' (a pet phrase of theirs). I am considering writing about the strides I've made in getting over a lot of these ancient demons - it took confronting them, and a battle that was waged over five years, to get these people to stop avoiding taking some responsibility for their mistakes and abuses. I hope you have told your husband how you feel - that you felt really let down that day, that you needed him to take a stand over this because this was not a small thing for you. (I don't know about Illinois, but I read the entire labour code for California because my husband's supervisor was such a psycho. Cal law allows for one day a month to be taken off - with appropriate notice and not necessarily with pay - to attend family functions or help with family issues. My husband cited that law numerous times.) Perhaps you could explain that now it is difficult to trust that he will really be there for you the next time you need him, say for NXStage training, which I hear requires quite a few days off. Rebuilding trust can be a slow, agonising process, but your marriage and your own peace are worth it. We are all pulling for you - I hope you can feel that as well.

[MooseMom]

Cariad, I did tell my DH how let down I felt and how frightened and insecure it made me feel about the future.  It was a very hard conversation to have, and I was careful not to use an accusatory tone.  He made the excellent point that keeping his job, and thus our insurance, was his way of taking care of me.  Of course I had already understood this on a logical level, and I told him that, but I told him that on an entirely selfish and primal level, I felt like he had not put me and my safety first.  Unfortunately, cloning technology does not yet exist and so he could not be two places at one time, and that's where the problem was!  His boss is mercurial at best; you never know who is going to turn up in his clothes on any given day...a human being or a nutcase.  This makes my husband's already demanding job even more stressful for him, and I hate adding to his stress.  Illinois law provides for sick time, and my husband has accumulated literally years of it, but Bossman trumps.

I do know that you all are pulling for me...we all are pulling for each other.  It's a great feeling, and I am grateful. 

We all have our (ir)rational fears, and my husband fears losing his job.  It is the only thing about which he has nightmares.  In today's job market, it is a rational fear; my husband has had to do the firing of 10% of the city's employees (he is a city attorney), so he is well versed in what losing your job really means.  However, it is irrational because while no one is indispensible, my husband is about as close to it as one can get.  On that occasion two years ago, his fear won over his desire to make sure I was safe, and that is something that is difficult for me to forget, especially as my need for caretaking creeps ever nearer.

[lillinny]

I'm a relative newbee to this whole thing.  Hubby was diagnosed in Sept. and started dialysis in November and came home with machine in July.  Some days I feel like Dorothy in Oz.  At first it was actually easier, as I felt like we had goals and it made it easier to move forward. . . (i.e. getting out of hospital, getting on dialysis, stabilizing, training to come home with machine. . . ).   I think for me, coming home and finding that it isn't as easy as they said.  ;-(  Also the realization that this isn't just for a day or a week or a month but............. scared the heck out of me.

First of all we had trouble with the fistula.  Arterial is fine.  Venous.........not so much!  And the dialysis staff also had trouble with the buttonhole.  couldn't decide if that made me feel better (I'm not totally incompetent) or worse (OMG, if they can't do it how the he!! am I ever going to be able to pull this off??)  Then the alarms.  When husband moves his arm and sets off the alarm I want to scream.  When the alarm is blaring and I'm trying to figure it out and he keeps asking me questions....................and I'm trying to fix it and not panic.............I want to run out of the room and never come back!

However, on the plus side........his kt/v is better.  He is finally starting to settle in and not complain about being on the machine 6 days a week.  Reading these posts has helped him a lot with that!  Best thing that has happened is finding IHD and hooking him up with it.  And (I'm afraid to say this and jinx myself), it is getting easier and the buttonhole seems to be working and the alarms are fewer and not quite so scarey! 

So have wanted to say those things for al while but have nobody to say them to!!!  So thank you all for listening!

[looneytunes]

Hey Lil...I can SO relate to your post.  And, like you, am hoping it gets easier with time and practice.

[MooseMom]

Lil, I haven't started D yet but hope to go onto NxStage when I do.  I know it is not going to be easy, but I figure that if it's so damned hard, NO ONE would be able to do it and NxStage would cease to exist.  But more and more people are doing dialysis at home.  Again, I believe that Mr and Mrs Schmoe can do it, then so can we.  Like learning any new skill set, it takes time and practice.  I guess it's just that when you are dealing with needles and blood, it all feels more urgent and, thus, overwhelming.

I have a feeling that your post could have been written by just about anyone who is learning NxStage!  That realization that this could be forever...well, that's a hard thing to come to terms with.  But it is amazing what people become used to when they have to.  The nurses must have believed you are smart and confident and able, otherwise they wouldn't have let you leave with a machine!

[lillinny]

Dear MM:  YES!  It is so funny.  The first week we were like two deer caught in the headlights.  When I said that to my 'not so diplomatic' sister in law, she replied, "Well, did you think it was going to be easy".  I wanted to respond, "no, jack***, I didn't, but didn't quite expect this either!"  Fortunately I was able to filter my reply.

It does get easier which is good to hold onto.  The needles was my biggest bug-a-boo but I think we may even have conquered that.  Also, the first month all he did was complain and ask me every 10 minutes, "what time is it?  how much time do we have left........."  Wanted to place the tournequet around his neck. 

The funny thing is that we really only hang out and watch TV at night. . . so now we do that while he is hooked up.  I remind him of that when he complains about being 'tied to the machine'.  And, I do understand that he hates it and hates having to ask me to get him something.  The good thing is that it has in many ways brought us closer together.  We are on the Titanic..........but we ARE on it together.  Words to live by!   

[okarol]

Moose Mom, We have gone past being angry to acceptance of our lot.  I am fortunate in that except for the extreme fatigue, diabetes and heart problems, I really am feeling pretty good.  Reading how bad some people on this site have it, makes me feel grateful for every good thing in my life, most of all my Hubby.

She was a sweet soul. I will miss her. RIP Red.