I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: misslynette on December 26, 2011, 03:24:41 PM
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I've spent the afternoon searching the web for caregiver information and then it occurred to me just to come here. I can't stand myself or the way I'm feeling, but I'm going to spit it out here. This is really long and I'm sorry in advance. I don't have anyone I can talk to about this and it's making me insane.
I'm not a caregiver for my husband in some ways ~ i.e., he drives himself to dialysis, "some" ... well, I guess that's the only thing he does for himself. :(
I feel guilty for having created this situation by doing too much for him. He takes multiple meds for blood pressure every day. I am about 99% certain he would never take a pill if I didn't load his medication box and remind him.
He's been on dialysis since April. He was having fluid overload and none of the docs he had would listen/help. It reached a crisis point with flash pulmonary edema one Sunday night, and a BP of 330/200 or something insane like that. He went to the hospital by ambulance, was admitted, and stabilized for a day or two, then another episode of FPE and into the ICU.
The first night he was in ICU he was doing so well I left the hospital for a couple of hours to take care of the dogs, etc. When they let us back into ICU, his condition had deteriorated drastically. He couldn't breath, BP out of control, everything bad.
I am certain they just ignored him during shift change. The doctor vanished, his oxygen level was 80, 75, 65, 50, 40 ... at that point, after begging for help for hours, I picked up the phone and called the operator for rapid response. That was enough to get all those jacka@@es from down the hall to get into action. They came running and shoved me out of the room and as I was leaving, I heard them call a code over the intercom.
Three shocks to get his heart going again. Everyone apologetic, hospital staff boo hooing all the next day. Meetings, meetings, meetings, so sorry, never should have happened, on and on and on. The one thing I got out of all of that was an okay to never leave the room. And I didn't unless another family member was there with him.
Long story short, out of the hospital, horribly sick, so weak, and into dialysis. Initially, he did better, was improving, then a series of surgeries to create a fistula (has a chest cath right now), all of which have been problematic, and here we are at the end of December with a leaking seroma in the right arm, the first surgery for a fistula in the left.
How did we get here? In 1999, he was diagnosed with diabetes related to liver dysfunction and chronic (silent) pancreatitis. Huge ordeal of getting him cured of a transfusion-related Hep C, and then slow improvement to about 2005, when except for insane blood sugars, he was doing pretty well.
My husband has always been a surface guy. If things look good on the outside, he doesn't worry about the inside. Example: he'll wash the car but never change the oil. He'll paint the house, but never think about adding extra insulation. That sort of thing. We're opposites. I don't care how much the car looks like the inside of my purse if the maintenance is good. You'd think we'd make a good team but increasingly, we don't.
So he started working with a trainer in 2005. We started traveling. His blood sugar's still out of control. Nag, nag, nag, on an insulin pump for a while with good A1Cs as a result, but then the pump interfered with snorkeling etc etc etc. No pump, sugars sky high.
We bought a house in Mexico and remodeled it with the intention of moving to the beach. That was a dream, for certain, one we shared. He was there for a year supervising the work on the house. Without me to remind him of insulin, checking his sugar, etc. he was pretty well out of control. Add to that an idiot of a doctor who did about every wrong thing one could do, and he ended up with the kidney problems.
The thing I have said for 10 years actually happened. "These crazy sugars will kill your kidneys. If you end up on dialysis, that's the end of our dreams, our travel, everything." Did my harping on it make it happen?
I am so @$%@$^@$ angry right now. With him, with the doctors. It's just about unbearable. And then I think of my own increasingly fat a@@, thanks to the stress of this year, and what right do I have to criticize him? And yet my struggles with losing weight and keeping it off don't affect him. I KNOW I need to lose more weight and exercise and I do it. I keep thinking if he'd just been willing to check his sugar a few times a day even, he could have managed with the insulin and we wouldn't be in this predicament.
Now he's on dialysis and eating/drinking absolutely anything he wants. He's so blown up in the belly right now he looks pregnant. Last night, I mildly suggested limiting his fluid intake since he was not going to dialysis until Tuesday, and he said "but I'm just dying of thirst." Another mild suggestion: "Have you checked your sugar?"
Of course he hadn't. Nor could he be bothered to get up off his all day perch of the side of his bed and go check it then. It wasn't until a couple of hours later that he did and of course it was high. As in "HI" ~ too high to read high.
I want to run away. I love him with all my heart. I just feel so hopeless. Now we've found out he can't have a kidney transplant and it's even worse. I was pinning my hopes on that, to get some kind of a normal life back. But everything revolves around dialysis and I feel trapped, as if nothing will ever be normal again. We used to have a life I thought of as like a fairy tale. It was perfect, and we were so happy.
I'm NOT running away. Not leaving. But I feel as if I'm in this alone ~ and he's the sick one. How crazy is that? He just doesn't seem to care and I care too much. I can't make him well and I am sick to death of reminding him of what he needs to do to not get sicker. I don't think I can take another long time hospital stay, another month in ICU. The constant vigilance required to make sure a loved one survives the hospital "care" is beyond me right now.
I've got a counselor and I take 25 mg of amitryptaline at night to help me sleep. I go to the gym and get an hour or two of peace while I'm working out. I'm trying to eat sanely because I don't want to get sick myself. But some days, like today, when it's gloomy and cold and I feel so trapped, it just seems overwhelming.
So sorry to have run on. Thanks for listening.
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Poor girl. You will hear from many of the caregivers here, and there are a bunch of them and there are a bunch of them who have spouses who just make their lives miserable because they are non compliant and or unwilling to take care of themselves. Oh, wait, I just realized I have one of those, who, so far, is not too ill, but he will be, which is unfortunate because I am already in 4th stage and am way sicker than her is. In the meantime, and until you can get some good advice, just remember that we are here for you and you are most certainly not alone. Rant whenever you need to, we all do.
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reminds me of someone I know who onstantly complains of chest pains and coughing too much but doesn't wanna stop smoking, he says we're all gonna die some day so I can do what I want, that's certainly not helping the situation, and unfortunetly I can't help someone that doesn't wanna help themselves.
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Your husband needs to take some responsibility for himself. I don’t have the words to make you feel better or how to pull this one off. My notions, in this case, swirl with ideas of control. Perhaps you can control his dietary intake by giving him the proper food and water. If he wishes to offend his body, let him do it – but nag him every step of the way when he does offend. He must understand that it is his responsibility.
Also remember this: take care of yourself.
gl
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My daughter has had a lifetime of medical problems, kidney involvement the latest. My husband was diagnosed with type 2 diabetes a couple of years ago. He does well with diet and meds for a while, then does what he wants. It is so hard to look the other way and make them responsible for their lives. I told him - your choice, I can't follow you around like a 2 year old. With my daughter I hover from a distance and go to doctor's appts with her to be the person who remembers exactly what the Dr said and also to question what the Dr is saying. With my daughter it is my job to remind the kidney guy about the heart guy and the stroke guy and on and on. They tend to just think about their own part. This year has been frustrating - like you I want my old "normal" back.
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im all worn out from our day today but i had to tell you from my heart, your not alone. Well, at least not in the part of the loveing, and nagging etc..... My hubby IS compliant, but its horendus how much i hover and watch over him and nag... :( I could call it "reminders" but i hear nag in my own head. He sais he appreciats it, but .... well anyway, :grouphug; and im SOOOOOOOOOOOooooooooooooooooooooo glad you got this all out and mabie, just mabie, it'll give you a pinch of relief. The whole D thing does settle and become your new "norm" but it's a shame it has to.. I wish you well, and keep posting and spewing (is that a word) your thoughts.. It's all understood here..
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:cuddle; Rant here all you want. It will make you feel better. No matter how much you love him you cannot control his actions. He has to take the responsibility and the consequences for his non compliance. It must be hard to watch someone you love being self destructive. Take care of yourself :cuddle;
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Misslynette, you are not losing your mind! Watching our loved ones sabotage themselves is hard enough. But knowing the impact that sabotage also has on you and your quality of life is like rubbing salt in an open wound. As care partners, we get used to the new "normal" in time. But when we are making all kinds of adjustments to accomodate this new "norm" and see our loved one do something that we know will have long lasting negatives, well...it is super tough to just accept it. There are truths in the statements about them being responsible and we are not their keepers. But there are also truths in the reality of being a care partner and watching our dreams and hopes go down the crapper along with their health. I don't know of any magic wand to wave that will make things better for you. I only know that you are not alone in this and I hope you will come to this forum to rant and vent as often as you need to. We all have (and still do) and it does help. I'm sending you a huge cyber hug and I'll keep you in my prayers.
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:grouphug;
Oh, I just read through this thread....
Mislynette, I'm so very sorry. Your husband must not realize how much his lack of responsibility is hurting YOU! No wonder you are stressed. There is only so much you can do to "help" him when he is unwilling to care for himself. I wish I had a magic bullet for you.
Will a heart to heart with him help at all? Explain how close he came to dying and that you really don't want him to put you through that experience again. :embarassed:
Or maybe the other end of the spectrum. Just tell him that he is choosing to put himself at risk. Have him be very clear what it is he wants you to do and share with him what you are willing (and not willing) to do in regards to HIS care. Then lay out what you want him to do for YOU! Isn't it supposed to be a two way street?
Anyway, I am thinking of you.
Vent all you want. That doesn't change the situation, but can relieve some of your stress and also helps you to clarify what the problem is.
:grouphug; :grouphug;
Aleta
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Oh Lynette, I know exactly what you are talking about. I agree with Aleta, you have to sit down with him and set boundaries. Don't feel quilty about doing too much for him, we all have done that and meant well by doing so. But you my dear, can impower him again. Make a list of things that you think he can do and let him do them! You will be amazed by his effort.
I know when my J. had his amputations done, those medical people told me "not to stay over night with him". At first, I was like, what the heck, he has to have me there!!!! But after a few days and them working with him, I realized, they were right! My husband told me it was the best thing for him and he was greatful to be able to do things that He knew he could do! I was greatful too, cause it taught me to just sit back a little, be quiet and he will get around to it. I was like all nervous, cause if I saw him struggle, I wanted to jump to help, but when I waited a bit, he finally did it. It was like a celebration!
Now that Iam back at my job, he gets his time to himself and I get me some me time. When I get home, sometimes he has dinner cooked and ready to eat. Then when we finnish, he goes in his room while I finish the dishes. We set things up for Dialysis then start. Sit back and 'ENJOY" one anothers company. Sometimes, we just need to be more understanding of each others feelings. There are many times starting out that I was angry, frustrated ect..... But once I let him do some things for himself, he was so thrilled to know that HE could still do things. It is different for the man than it is the woman. Let him help you Lynette!
I also know, that when he was In-Center, they just consider them as a number! It's Sad, but it is true. Things got alot better for us when we did D at home. Just saying.
As far as meds go, does he have memory problems? If not, then tell him it is his choice (Calmly) and turn and walk in the other room. Lynette, it is hard to watch our loved ones suffer this disease, but we have to take care of ourselves too. Just let him do more for himself to boost his moral. Praise him when he does do things(even if small). Lift him up in everything that he does positive. If he doesnt do something he should do, dont scould him, just tell him its ok and you know he wont make a habit of it.
You are not alone! For sure, there are a bunch of us here, that will listen to your frustrations, cause we know! You are not a bad person at all! You are a very concerned wife who loves her husband unconditionally! But you have to think of your children too. They have their whole lives ahead of them, and find ways to get them and you away for enjoyment time. Get them out of the house and stop worrying so much about HIM. What ever happens, will happen. You nor anyone else can change it. Just try to make it as pleasant for all of you! You are going to be fine, Lynette, and know that we are here for you!
We are all going through this "TOGETHER", and will see each other through to the end! Rant here all you want! And if he ever starts to raise his voice, just calmly remind him that you are his wife, not his child, and you will be back when he speaks to you in a more civil manner. I can almost guarantee you, he will think before he raises his voice again. If he does, repeat the above!
He loves you, Lynette! He is in a situation that he did not ask for. There are all kinds of thoughts going through his head and some may not be pleasant, as they struggle with their mortality because of their situation. I try to imagine their lives the way it is for them, and even though I understand their situation, I am not living it!
I hope things get better for you my friend. Sometimes we just have to be and approach things differently, to make a difference in our lives!
Its not perfect, but it gets better over time.
lmunchkin
:kickstart;
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So sorry you're going through this Lynette. Have you sat down together and had a good chat? Isn't it only in the last week that you've found out about not being able to go down the transplant route? I can't even imagine what life would have been like for me if Blokey had been told a transplant was definitely not an option and he faced being tied to a machine (of whatever modality) for the rest of his life. Over the last few months you've both seen your dreams and hopes slipping through your fingers and that is such a major blow. Does he have a counselor too? Does he know that you're not going to just run out on him because of this (do you moan to him about the fact you can't fulfil your Mexico dream?)
It is completely overwhelming isn't it? They don't do what we think they should do. We want to nag them to do the 'right' thing. When we want to do something we forget that they can't necessarily drum up the enthusiasm or the motivation to do it too. We feel guilty, they feel guilty. We have to watch them suffer and know we might exacerberate the situation if we try to intervene ...
It took a long, long time for me to come to terms with Blokey's kidney failure. But it took him time too. He was really naughty with fluid for a good few months after beginning dialysis. He would tell me he was doing okay and it wasn't until a few months later that he was actually able to admit that he'd been lying. At least Mike isn't lying to you about these things! (Not really a perk, but at least you know what's going on.)
Out of everything you do for him the control of his meds is something that he needs to take responsibility for (unless he does have memory problems or some other issue which affects the taking of them). How would he cope if you were unexpectedly called away from home for a couple of days? It might even help him feel a little bit useful and pehaps spur him on in other areas.
Vent always and often. As willowtreewren says, it won't solve the problem but it can help relieve stress AND it can help to get other (unbiased/neutral) opinions on the situation.
Thinking of you.
*huggles*
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When you are in a marriage/committed relationship, there is no such thing as "self-destructive behaviour" because this destruction is never limited to just one person. It always emanates outwards, engulfing spouses and children.
Refusing to look after yourself for the benefit of those who love you is selfish, arrogant and cruel.
Many people who are chronically ill need help in sorting out the mountain of meds and the acres of red tape that define CKD/ESRD, and there is no shame in that. But to ignore your health and not expect it to devastate the dreams of your family is unacceptable. There may be explanations for this sort of behaviour, but there are no excuses.
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Lynette, I too am so sorry for what you're going through. Venting and asking questions here will help. It has helped me considerably over the last few months. My boyfriend and I were ambushed by kidney failure in February.
I totally hear what MooseMom is saying, but if your hubby is a "surface" guy, then he may not even be aware of what's going on in his own head, much less yours. From some of the conversations and outbursts that have happened here, it's clear that my bf needs counseling. It's a lot to digest and sometimes we don't even recognize ourselves when something huge alters our lives. It was hard to get some of those conversations started, but they were necessary and there will be more to come as things change. Let hubby know how this is for you and be open to how he feels - or doesn't feel. Men are slow like that.
:grouphug;
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Lynette, I too am so sorry for what you're going through. Venting and asking questions here will help. It has helped me considerably over the last few months. My boyfriend and I were ambushed by kidney failure in February.
I totally hear what MooseMom is saying, but if your hubby is a "surface" guy, then he may not even be aware of what's going on in his own head, much less yours. From some of the conversations and outbursts that have happened here, it's clear that my bf needs counseling. It's a lot to digest and sometimes we don't even recognize ourselves when something huge alters our lives. It was hard to get some of those conversations started, but they were necessary and there will be more to come as things change. Let hubby know how this is for you and be open to how he feels - or doesn't feel. Men are slow like that.
:grouphug;
But Lynette's husband wasn't "ambushed" by kidney failure. He had a decade in which to become "aware of what's going on in his head", AND he had a loving wife who, for a decade, warned him of the consequences of his inaction.
I have enormous sympathy for all of us who truly have been "ambushed" by a diagnosis on CKD. Many of us just have to sit by and witness the gradual decline of our renal function, knowing full well what our future holds. Many of us don't have the luxury of actually being able to DO something to keep ourselves off dialysis...to IMPROVE our health. To think that Lynette's husband had an entire decade's worth of alarm bells but refused to listen...that's horrifying to those of us who want so desperately to be able to save ourselves, but cannot.
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Oh, misslynette, I offer you hugs and a shoulder to lean on.
I hate to add to the heaps of advice you've already received, but I feel for both you and your husband because I see little echoes of my own marriage in your story. I like the term 'surface guy' and shall apply it to my own husband because it is just so true. Your analogies were so dead perfect. In fact, we have an antique vehicle languishing in the garage, and my husband wanted to do something completely bonkers like buy new floor mats for it when the thing is literally in pieces and we are not even sure he can get the motor started. Surface guy indeed.
He is not the person in renal failure, but then, renal failure is not the only ailment in the universe. I was in renal failure for decades and there were times - long stretches in fact, before and after I met my husband - where I just could not have made myself care. I can completely appreciate your anger, I can almost feel it you describe it so well, and yet.... being ill and having all of these restrictions placed on you and all of these people wagging their fingers at you and people with no business telling you what to do taking it upon themselves to tell you what to do.... oh, it's a soul-sucker, believe me.
I do not recognise the legitimacy of comparing my behaviour to your husband's to anyone else's. I am not in his situation, I do not face his challenges. Diabetes, like renal failure and so many other diseases, can be a battle, and it's more of a battle for some. I did very well in renal failure, so well that I never considered it a serious disease until I came here and really started to listen to the experiences of others and finally got it into my head that yes, people react to this disease in all different ways and just because I can do something in short order, like come to terms with what's happening and get on with it, does not mean that anyone else can. I think it's harder for many men emotionally, because they do not understand, as drgirlfriend said, what is going on in their own head and see it as the ultimate failure to have to talk about these feelings with someone. (Not necessarily a counselor, just an understanding person.) I do not think it is fair for us to judge his behaviour since we do not know him.
I wish I knew what to tell you, but I know that some people only want to live so long as they can live by their own rules. I think he needs to talk to you honestly about whether he wants to continue living, is he just really depressed or is it a case of 'I just want to live to the fullest knowing full well I will face this spectacular crash down the road'. If he does not want to keep living if that means diet restrictions and dialysis and insulin shots, sad as it may be, it is still his right. I think he owes it to you to say that, though. If he's depressed, that's really tough, but he can start to do things to address it if he wants to fight this. Being on dialysis forever, I don't know how old you two are, but technology continues to advance, and there are people on here who lead incredibly active, fulfilling lives on dialysis. I don't see why you couldn't eventually move to Mexico if you two can come together and work as a team toward that goal. It might be a different experience to what you both had envisioned, but most of us have to accept that life does not always work out exactly as we had hoped.
You've probably been asked this before, but would he come on here and talk to us? Why exactly can't he get a transplant?
I feel for both of you. You both are in pain and it seems like you are both going through this alone. I think you need to do your best to open up the lines of communication and find out where he sees this all going. Yes, by all means come on here and rant about him when you just cannot take it anymore, but I would try to suspend any judgment about how he should or should not be coping and try to get him to talk so you both can learn and move forward. You sound like you have an innate understanding of how tricky it can be to lecture someone on their behaviour, and I think this caution that you display will serve you well. Hugs to you both! It can be so desperately hard. :grouphug;
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I am completely overwhelmed ~ teary-overwhelmed ~ by the kindness and generosity evident in your responses here. We've just had a hellacious day which started when my husband fell down the front steps on his way to dialysis. Trip to the ER, 6 stitches in the chin, three inside the mouth, blood in his ear, and now he's operating with one hand because the right arm is useless. He's in a lot of pain and I am ~ ha! ~ helping! Because what's a man to do with one hand?
I so appreciate all of the suggestions here and your thoughts and sharing of experience. I am going to go to bed with my overwhelmed-teary self and come back here when I have more time so I can thoroughly read ~ again ~ all of the collected wisdom on this thread. Very very grateful for y'all listening to me. Bless you. And thank you .... more to come.
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I wish I could be as generous of spirit as cariad, but when it comes to this issue, I just cannot.
When you marry, you assume a certain responsibility for your partner's well-being. It's not always easy or convenient to do that, and we often fail. It is easy to forget about your spouse's emotional comfort when you yourself are dealing with something as devastating as CKD/ESRD or any severe illness. Fear, depression, anger and frustration can make you forget that your turmoil isn't confined to just your own universe. But illness does not excuse disregard.
:cuddle;
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MissLynette, love the name :)
First of all - YOU ARE NOT ALONE.
Second - YOU ARE NOT INSANE
Third - sadly, your situation is not unique.
Over the years here on IHD we've seen a number of exasperated caregivers/spouses in similar situations because their partner (and funnily enough, it's always seemingly the husband/man) just won't take care of themselves.
I've never been married (yeah yeah you lot, Vegas doesn't quite count!!! :rofl;) but I do understand about committed relationships, and of course the notion of "in sickness and in health" and all of that. You love someone - that includes all of them.
However YOU need to keep in mind the following two key points to my way of thinking. 1: YOU ARE NOT RESPONSIBLE FOR HIS CHOICES. Now, you have to LIVE with them, specially when things go pear shaped, but you can't take on board guilt/angst/responsibility if he's fluid overloaded again because he eats and drinks whatever the hell he wants. 2. YOU NEED TO CARE FOR YOURSELF. Yes, he needs your help in many ways, but if you put everything into him, then you WILL go insane. You need timeout for YOU. You need to spend time on yourself. a break, a treat, a massage, a girliie shopping trip, whatever. If you're exhausted emotionally and phyisically you sure as hell can't help him.
I've said this in similar threads about others so I'll be a broken record to long time readers here (perhaps why I've never been married!!) but as I said above your hisband has to be responsible for his own choices and decisions. I am sure doctors, nurses, dieticians, YOU etc have informed him about the dangers of poor diet control, fluid etc - and heck his own dangerous experiences, overload, inability to breathe, high BP etc should tell him that they're not just making it up. However from your story he's a long history of just not really taking care of himself in this way. That's sad. I don't understand it myself.. but he's not the only one as any timeon IHD would prove to anyone. Maybe it's a reaction to dealing with chronic disease (eg: I can't control so much, but I *will* exercise some by eating this stuff I want) - of course the counter to that is that the far BETTER form of control over things you can control is to abide by the diet and fluid trstrictions to keep yourself as healthy as possible to minimise disruption. You have not mentioned if he may even remotely be a candidate for transplant or not, but certainly that could be one very good reason to try and look after one's self I would think. Even if not, simply avoiding being thrown into hospital, and all the horrible things that happen should be enough. However this kind of behaviour is not exactly rational.
I am not trying to say leave him be and whatever happens will happen. Of course you can't do that! You love this man and you care and you want the best, but one thought may be that nagging is actually pushing him the other way - like a teenager rebelling. Maybe sit with him and explain your frustration? What you see and how difficult it is for you? Or perhaps just, for example, put his meds out and a list of what he's supposed to take when, and just say "OK your meds are here. It's up to you"
As you say you may have created a situation where he's become used to you organising everything and doing so much for him. Well for your own sanity you should pull back. The other reason to do that is that if one is stable on dialysis and sticks with the limits, in the vast majority of cases you can lead a pretty normal full life (I worked, did a bit of travel, exercise etc for over 4 years while on that darn machine - of course I had no wife to nag me, unless you count the cat :) ). Plus making him more responsible for himself and doing less gives him MORE control over things he CAN have some control over. I feel a real problem for some (I do not know about this case specifically of course) is that having a terrible disease like kidney failure makes you feel a real lack of control over what happens in life - things are shutting down inside and there's little you can do, and the side affects cause issues with other things in life - eg: feeling sick, tired etc - leading to perhaps loss of ability to work as much as you want, or do some simple things, or even if you like being intimate - all things that can have a huge effect on the psychology of some.
As I said you need to look after yourself as much as him. I think coming here to vent and share is a great step - at the very least you can come here and get it off your chest, virtually yell etc and there ARE people here who can relate and offer support. Other things you can do are spend more time with friends if possible, treat yourself to things you like - like maybe a evening out, or a shopping trip, or a massage or something - whatever it is.
Best wishes to you - I know what a difficult situation it is for you and can only guess at how you must feel. I hope being part of our family can help you in a small way.
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Good morning all, and happy new year. 2012 would have to go a long way to beat 2011 in the "OMG, what a wretched year" department. Here's hoping it won't. As of this moment, we're about 17 hours into it and ~ hey! ~ no crises! Perhaps that's a good omen.
One of my ongoing frustrations with my husband's primary care doc over the last decade or so is that he never really explained to him the consequences of unchecked blood sugars. He also failed to effectively treat high blood pressure, and when my husband's GFR dropped from over 90 to 25 under his care in a year, he said nothing except "Creatinine's fine, no worries," then doubled the dose of Lasix (and tripled it, quadrupled it).
A little over a year ago, sitting on the back steps of our little Mexican casa, we had a discussion that turned into a major argument, one of the few we've had in 20 years. My man was dead set on adding a room above the garage, overlooking the small pool in our back courtyard. We'd been working on that house for 6-8 months and it was looking great. An add on, in addition to another expense, was something that would keep him in Mexico for another several months and I was worried about his health.
I remember saying "I want to know about your kidneys. I'm worried that you're getting really sick. There's no reason to spend more money here if we aren't going to be able to come because you end up on dialysis."
He scoffed. We fought. And after we both huffed away to separate corners of the house for a few hours, we met up in the kitchen later that afternoon. The discussion came up again, as you might imagine, and I will never forget what he said.
"I am not sick. I'm not. And if I am sick, I just want to live to the fullest until the end. But I am not sick."
At that point, I drew back a little and thought "who the hell am I to tell him what to do?" One of the things I've long admired about my sweetheart is his ability to always ~ always!!!! ~ think positively, to look on the bright side, to expect the best and not even consider the worst. I recognize that I have taken on some character traits of my German father and those traits keep me constantly looking over my shoulder to see what manner of atrocity may be gaining on me.
So I am not always right about these things. And maybe it's better to live with the expectation of good than the other way. I borrow trouble, he turns his back on it and refuses to acknowledge its presence. Who's right?
I honestly don't know which is the better way to live. I think I am a realist. He's living in denial. But I am miserable and he's pretty happy. There is something to be said for that unconscious thing, denial. And I always try to remember that too, denial is not a conscious choice.
On the other hand, the worst, most horrific, most painful, most dreadful events of his life, he has not shown up for. Versed and lack of oxygen go a long way toward impairing memory. I too clearly remember holding his hand and telling him to hang on, that it was going to be okay if he wouldn't give up, then hearing the overhead speaker calling a code. He swears he remembers nothing, but that event has haunted me since April. It's been so haunting, and so intense, that I've had moments in the last 8 months when I've been untroubled by the thought of my own death, like I really wouldn't mind that (though not actively suicidal).
I have a therapist. He went to one and quit because "all we did was talk about the weather." Sometimes I think I'm projecting my own anxieties and stresses onto him. And if he's only got a few years left, do I have a right to nag him to the end?
People in Al-Anon find a way to live peacefully and with contentment with someone who's on a destructive path. Though I have noticed that the happiest Al-Anons seem to have loved ones who are actually sober. I never got the Al-Anon thing because of this: If I detach and let go with love and all that stuff, but the behavior of my loved one still impacts me so negatively, it's too much like speeding down a mountain road in the back seat of a car with a driver asleep at the wheel.
Ugh. I am really rambling. But having read all of your responses (three times, thank you) I keep coming back to having to make a decision. Leave? That's not my choice right now. Nag him into compliance? It's utterly exhausting and makes me angry as all get out. Or find a way to live in peace and serenity by taking care of myself and doing what I can to make this time as happy as possible.
That 3d way is a tall order but I think that's going to be the plan for now. I have the escape hatch (leave!) and knowing I'm not trapped is good.
That's what I think for now. I'm powerless over him and I don't want to leave at this point, so what else is there?
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This is a profoundly insightful bit of writing, misslynette. I especially appreciated this statement:
On the other hand, the worst, most horrific, most painful, most dreadful events of his life, he has not shown up for.
It's true, you feel the consequences of his actions more than he does, but I think of the choices you've laid out, you have picked the one that will allow you the greatest happiness. It's painful, but it sounds to me like he's made the choice that some people do make, to get the most out of life in his own way until it's over, and if that means less quantity but what he perceives as greater quality, he'll take it. Hugs to you, my dear. :cuddle;
I wish I could be as generous of spirit as cariad, but when it comes to this issue, I just cannot.
MM, I don't see myself as displaying any great generosity of spirit, certainly not more than you. I think you can imagine from my history why I feel the way I do, and with what you are currently going through and have gone through in your own life, I can understand and completely respect why you are of a different opinion. I feel guilty for the pain I put my husband through, but in the end, I do feel my choice of path was the only way forward for me at that time. Reading on here about what some spouses go through has really changed my attitude and actions toward my own health, and that's the only person whose actions I can change. I never saw it from Gwyn's point of view before, and I think part of that for me personally was such dangerously low self-esteem that I could not imagine he would care if I did self-destruct. Now I know better, and of course, there are the kids to consider, and I know they'd be devastated.
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I am sorry what you're experiencing. I almost think he's survived as long as he has due to your periodic interventions. But of course, as he stableizes, he looks at you as though you're making a big deal over nothing.
Everyone deals with stress and fear in different ways. Denial can be a comforting thing, and some people rely on it to cope. He may be one of those people. If we don't look at it, then it's not there. No problem.
Referring back to your Al-Anon reference, I think the part that might help is the setting of boundaries issue. For example, you can say what you want, beg and plead and threaten, but it's the boundaries that you set that help YOU cope. It may do nothing for him. It's a choice YOU make for how you will respond (or not respond) to his actions. Boundaries - as I understand them - are situations, conversations, commitments, based upon values you have decided are important to you. Then you need an action, or consequence. A consequence is: If you do this, then I will do this. It can be something as simple as leaving the room, going for a walk, calling a friend and going out. What I call "more serious" boundaries have consequences. These consequences are something you have to be willing to follow thru on. If you don't, then they are empty threats. An example of a bad boundary is some consequence you can't or won't enforce. Some people threaten to divorce their spouse, but it's something they wouldn't actually do, because it's not what they really want.
None of this is easy. It takes effort, and you may reset your boundaries as it seems necessary. But it's for you. You make decisions about what you want and what you can live with, and what is a deal breaker.
The undertaking of a new action brings new strength.
Not sure this helps, but that's my 2 :twocents; :twocents;.
Best of luck to you.
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Lynette, I think you will do whats right for not only him, but the "whole" family. Taking care of yourself is an excellent start, so then you can see to childrens and his needs. Just take it one day at a time. What ever happens will, so just do the best you can! That is all anyone can ask!
lmunchkin
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okarol, you more succinctly said what I've been thinking about today. Setting boundaries and limits on what I'm willing to do, even if means (in my mind, anyway, perhaps in reality) that his life is shorter, will probably keep me more sane and a lot less angry.
I can't stand feeling angry about it all the time. I think one of the things that kept me pushing is that I don't want to live with regret myself. So I imagine him getting very very very sick again and then regretting that he didn't do things that might have prevented it. Or maybe he wouldn't even do that?
In all of the soul searching I've done with the information you've all shared, it's become really clear that I'm projecting a lot of my personal feelings, thoughts, and beliefs onto him. I would be furious with myself if I'd been able to prevent dialysis, then ended up in that chair three times a week. I just don't think that's how he thinks. I guess I can bash my head against that wall, or accept it. What I've been doing is making us both miserable.
One thing I will do is go to Mexico myself. My retirement kicks in in May and while I won't move, I am more than willing to travel without him. I've also been thinking about getting a tiny little RV so I could go a few places, visit nephews, great nephews, sister in Florida. He doesn't seem interested, so I'll pack my pillows and take off myself.
I am really really grateful to find out that I'm not alone with all of this. Your responses have helped me so much.
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Lynette, I think you will do whats right for not only him, but the "whole" family. Taking care of yourself is an excellent start, so then you can see to childrens and his needs. Just take it one day at a time. What ever happens will, so just do the best you can! That is all anyone can ask!
lmunchkin
lmunchkin, I looked at your "history" there by your signature and got into a little frenzy, remembering his peripheral vascular disease, the last gasp effort to create a fistula, where to go then, etc etc etc. Amputations have entered into my urges to check that blood sugar. I think it's pretty miraculous that any one deals with this kind of thing, with severe chronic illness, and maintains any degree of sanity.
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Thanks Lynette, but it isn't always easy, as you can attest to. We do what we must, because we must do it! In all my fits of frustrations over the years, I have learned a very valuable lesson, He did not ask for this and neither did I. But there is a reason for it, and I may not know it, but its here and I will do my best to make it the Best I Can for him.
Even still, I find my frustrations still rising, but not to the breaking point. I thank God daily for that!
Hang in there Lynette! You have IHD to lean on. I too, have expressed my frustrations to IHD, and they have helped immensly. I hope & pray 2012 is a much "BETTER" for your whole family.
lmunchkin
:kickstart;
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In all of the soul searching I've done with the information you've all shared, it's become really clear that I'm projecting a lot of my personal feelings, thoughts, and beliefs onto him. I would be furious with myself if I'd been able to prevent dialysis, then ended up in that chair three times a week. I just don't think that's how he thinks. I guess I can bash my head against that wall, or accept it. What I've been doing is making us both miserable.
Of course you are projecting. We all do it! How many times do we say to ourselves, "Well, if it were ME, this is what I'd do." Well, it's not you/me/the guy next door, so what we would do in your husband's position is pretty irrelevant. So yeah, you will have to "accept" his choices, but that doesn't mean that you have to be trapped by them. Go ahead and take your RV and go where you want to go. If it were me, that's what I'd do! :P
@ Cariad, one thing you've taught me is how chronic illness can be so devasting for so many years if you are affected as a child. I didn't have to deal with CKD until I was much older and had more emotional/psychological tools to help me cope and to also help me protect the ones I love from my outrage. I understand your history, and I understand the choices you've made and why. :cuddle;
I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times. Lynette's husband isn't going to be able to live life to the fullest until the end. That's the sad thing about all of this.
Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end". I suspect it is code for "I can't be arsed."
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I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times. Lynette's husband isn't going to be able to live life to the fullest until the end. That's the sad thing about all of this.
Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end". I suspect it is code for "I can't be arsed."
No, you're right. He's not living life to the fullest right now. He's not able to do any of the things we loved. Our traveling days are pretty much over. He's too weak to garden. It's just dialysis, home, dialysis, home, doctor, home, hospital, home. Yippee, right? :'(
It would be a blessing for any of us to simply drop dead in our tracks one day. That's the gold standard exit from this planet. After this most recent episode of a month in ICU, I thought tattooing Do Not Resuscitate over my heart might be the way to go.
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it hurts alot huh missl :'(
We have just been through that valley but hopfully, are heading for a hill..
I hope something good will come to you, some peace mabie??
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:grouphug;
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@ Cariad, one thing you've taught me is how chronic illness can be so devasting for so many years if you are affected as a child. I didn't have to deal with CKD until I was much older and had more emotional/psychological tools to help me cope and to also help me protect the ones I love from my outrage. I understand your history, and I understand the choices you've made and why. :cuddle;
I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times. Lynette's husband isn't going to be able to live life to the fullest until the end. That's the sad thing about all of this.
Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end". I suspect it is code for "I can't be arsed."
MM, definitely good point about dialysis not allowing him to necessarily live life to the fullest, at least not the way that he is practicing it. I still think I have a lot in common with this man, though (maybe not anymore, but there was a time). He said outright that that was what he wanted, that IF he were sick he wanted to just ignore it and continue living full-on, so I guess I am surprised that he is even bothering with dialysis at all. My thought was that when I went into complete renal failure I would just refuse dialysis and let myself go. It wasn't that I couldn't be arsed and it certainly wasn't a lack of caring about Gwyn. However, until you are there, who knows how a person will react, and I never reached that point where I had to decide between dialysis and death. When I was told that I would not be included in the clinical trial (4 months after I was told he would do it) I don't think I left my bed for that week. I did not share with IHD because I did not want to hear about how well you could live on dialysis, and I was fairly certain that I would not be able to keep from displacing my anger. I am so goal-oriented, so this really was not like me, but I just dropped out of my own life.
He is not living life to the fullest the way you or I would define it, but he is certainly living in defiance of what everyone is telling him to do, and it may not be pretty and it may actually be childish in many ways, but for me, that type of defiance was a way to feel like and prove that I was still in charge of my own life. And true to this spirit until the end, I became more enthusiastic about the trial every time some idiot doctor would tell me I was going to die or regret it if I participated in the procedure. I suspect many people are wired this way. Anorexia is a disorder with a high relapse rate, yet they have found when they make eating and taking care of oneself into a political statement, basically a defiant act, that is a very successful way to get anorexics to start eating again. This is why I think IHD can be such a great resource for us defiant sorts - demanding the best dialysis is completely rebellious and political in our country. That more than anything would have motivated me to continue on dialysis - for the first time in my life I understood what a defiant act pursuing the best healthcare for myself could be.
Anyhow, Lynette, I think you have the right idea. Keep following your goals and dreams. It is heartbreaking that you are in this situation and I hope you'll keep sharing and letting us support you through it all. I really hope your husband chooses to change his behaviour before it is too late. Best of luck. :grouphug;
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Cariad, what is this clinical trial thing you mentioned? I wish Mike could get excited about something, even if it was fighting back against the lackadaisical medical care we seem to have.
There was one night when he was in ICU last April. He'd had a kidney biopsy and his platelets were ridiculous. About 6 hours after he had the procedure, he started bleeding everywhere, even from needle sticks that were days old. I figured that was the end and reminded the hospital staff to review his advanced directive.
So I was surprised later on to hear him tell someone that he'd want every effort made if he crashed again. Every effort. That really wasn't what I thought at all. But then I'm the depressed one :)
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Lynette,
My heart is with you xoxoxo
I wish I had someone to give me just a fraction of the love you have given your husband the way you have taken care of him. I have no one if I should need help.
Please do what your gut tells you to do and live in peace.
love
River
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Cariad, I can certainly see how defiance could be an extremely useful tool. Fear and anger can be useful tools, too...those are the ones I'm most familiar with. You ultimately used defiance to survive; perhaps Lynette's husband just isn't quite there yet. Misplaced defiance, or, perhaps more accurately, unused defiance has landed him AND Lynette in a position where useful defiance may come too late.
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Cariad, what is this clinical trial thing you mentioned? I wish Mike could get excited about something, even if it was fighting back against the lackadaisical medical care we seem to have.
Oh, it was a long process but it had to do with transplant and coming off the post-transplant drugs, so unfortunately, does not look like an option for Mike from what you've told us.
That is interesting that he wanted heroic efforts to be made should he require resuscitation. That would suggest that he does want to keep living, and perhaps that he was concerned that he was going to die. If he wants to rise to this challenge, there are many who live really well on dialysis and they are happy to share their secrets. Also, there are clinical trials on the horizon for devices like the artificial kidney, but he would need to stay alive until those options are better developed. Perhaps while you're out enjoying life, he could come visit IHD and he could learn how this doesn't have to be the end of his enjoyment. (I realise that likely won't happen, but you could throw it out there.)
Does he know about the Life or Death Committees? At one point in history he would have had no choice, a committee would have refused to give him dialysis and he would have died. Truly, there are many people who went through a protracted nightmare to give him the right to be on dialysis even if he doesn't take it seriously. I wish I knew how to motivate him. I do suspect that you may not be the only depressed one in this relationship, but perhaps he shows it very differently?
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Lynette - *hugs* this is so difficult for you - I can barely imagine.
I think a lot of folks have got in before me with some very good comments and suggestions.
I will just put my own two cents in (as usual - nobody can shut me up!!)
I don't see it that you are projecting all of your hopes and fears and concerns on him. I see it that you are *driven* by your fears and concerns to nag him etc(which he hates). And what's behing that? Oh just the simple fact that you've *loved* this man for over 20 years!!!!
By him saying "I'm not sick, and even if I were I'm going to live my life to the fullest..." shows denial. Clearly. This is frustrating for you. It would be frustrating for me! As someone wrote above he's not allowing himself to live life to the fullest because of his attitude to just eat, drink & be merry.
I too have the attitude to live life to the fullest, but I temper that with "being realistic" - when I was on D sure I would treat myself from time to time and do everything I could, but with the restrictions required by D you had to be smart about how you lived life (as in be careful with the fluids, don't eat that block of chocolate, etc). It just means a modification of lifestyle to support what you want.
I make it sound easy writing that I know.. and I also know it isn't... but I do know that when you have the denial attitude of "I'm not sick" coupled with "living life to the fullest" and of course not being properly informed of consequences of actions (as you have suggested) then that's a pretty dangerous combination - though it seems that even if he had all the information at hand the "I'm not sick" would kick in and it would go in one ear and out theother.
The rational part of me then wants to argue "but why can't he see that there ARE consequences and that he IS sick when all those bad things happen that put him in ICU, and he can't breathe, and is physically sick etc" - but we all know how some people deal with kidney disease is hardly rational.
I would suggest you talk to his doc with the concerns you have about the information not sinking in, but I don't know that the doc is the problem as much as the patient
And at the end of the day you simply can't change him - and it's probably not a good idea to even try to (which is essentially I think what some of the others above have said). It seem setting boundaries for yourself is probably the best action you can take - as difficult as it will be when you see him suffer and wonder what will happen next... it's not worth it to you to keep fighting this. Perhaps that is your projecting on him that you want him as well as possible to live with - maybe he's over it all. Maybe inside deep down he understands but wants to "go on his terms" - I don't know.
Probably the way it is and for the harmony of your relationship you do have to take a step back and try real hard to keep to those boundaries. Let him know where you stand. Be honest. Be open... but don't nag. It hasn't worked anyway just put him offside -he'll do what he wants anyway it seems. Better to just be there and support him as best you can within those boundaries.
I hope being a part of our community will help you through this.