Survival Tips

Sure sounds like we've had almost parallel experiences . . . dealing with, at times, an extremely frustrating healthcare profession, husbands, etc. Sometimes I'm not sure who I'm more fed up with . . . feeling like it has all been up to me. I'm POOPED!! I last told him . . . "If you don't care, why should I?" So many times, even the doctors begged him to comment on how he was doing or how any of it was making him feel; so, because someone had to respond, and if I was there, I answered them as best I could. One doctor commented, "He certainly is 'stoic' ". One of my daughters was in the room at the time and said, "You have NO idea."

We've always been opposites, so dealing with problems (of any kind) has always been a cause for 'distance' between us. I always thought I was helping him deal with things, speaking for him, when he couldn't or wouldn't . . . but I think that was a mistake in a lot of respects. BUT, when his/our situation starts threatening our lives (i.e., our youngest daughter's wedding, our grandson's graduation, our home and our financial lives being threatened) . . . well, then that's when I feel obligated to speak out.

When I've left things up to him . . . . (i.e., the year they let him go with what turned out to be Stage 4 lymphoma in 2018, with them telling him that he just needed to use a "special soap" and he accepting their "solution") . . . . blaming what we were witnessing that whole year with a really strange "rash", he losing weight, blood results going wonky . . . . things just never are handled until all he*l lets loose.

I love him dearly, but there have been times that if I hadn't been there . . . he wouldn't be here today. I don't mean to sound like a "I know more than anyone" person but sometimes I DO. There was a night, also, at the hospital when he woke me up to say one of his eyes "hurt" and that he had a really bad headache after they had sped up his heparin drip to make up for them postponing a procedure. When I looked at the rate of the drip and how fast and how much heparin they were giving him, I called the doctor in immediately and made them stop the drip. The doctors, of course, looked at me in disgust and made me sign a waiver. Not 10 minutes later, he was fine. Had I not been there . . . he would have had a massive brain bleed.

Another time, years ago, when I was pregnant with my first child, who was breech, right up until my water broke, he convinced me to wait for him, sitting on the toilet . . . dripping away . . . . while he made himself pancakes. To this day, he says it was because the doctors told us not to panic. Ummmmm, welllllll, yeah . . . . they said not to panic but to get into the hospital immediately if my water broke. When we got there, the doctors scolded him for waiting as long as we did because her little foot was "out there", and when they did an emergency C-section . . . they had to revive her, as she was what they called a "blue" baby. Granted, I was a dumb cluck back then; but I've learned to speak up when I need to ever since. It's been a long, hard road of self-discovery for me . . . and I wish I had spoken up sooner . . . . but here we are today.

I love my husband, dearly. If I didn't, I wouldn't have fought as hard as I have for him . . . for US . . . . but with his serious health conditions over the years . . . my challenge has been, not only with doctors and the medical profession, but with him too. Things are a bit better these days, but he still just doesn't ever seem to see just how much harder things have been because, rather than dealing with things together, as a team . . . . we go into our separate corners with what feels like he's judging me and that he thinks his way is better . . . . so many more instances where I've tried to leave things up to him but when I do . . . . things just don't turn out well and then I'm left with a bigger problem than if we had just been able to deal with challenges TOGETHER.

One doctor, told me over the phone, that he should eat a banana when we went into the ER with his first PE. He, of course, was perfectly fine with that ridiculous "remedy" for the pain he was experiencing; but, I thought it absolutely ludicrous! I didn't speak up, like I do today, but that stupid opinion almost took his life.

Time after time (and there are so many others that I could cite) . . . I have learned to depend on my own assessments and trust my instincts. Things like his reaction to one of the chemo drugs they were giving him for the lymphoma that he was reacting to. I could tell he was having a reaction but he just laid there, perfectly quiet while I was witnessing him developing a rash and going into uncontrollable shaking. He needed the drug but I made them slow it down. His white counts, too, after a couple of chemo treatments started to tank so I asked them to give him something for it (a Neulasta patch) that he had to, from then on, have after every treatment. They were reluctant because of the cost . . . but when I told them that we would pay for it ourselves if we had to . . . they did some "checking" and prescribed it every time.

I'm not a doctor. I don't have all the answers to everything. It may sound as though I do, but I truly only have our best interests at heart when I push for things. To be honest, I think part of the problem is that he's learned (not always "respected") to just depend on me to do all the talking . . . always ready to say, "See. That was the wrong way to go about things", yet taking advantage of my "chutzpa" when it turns out for the best.

I honestly don't care what people think of me anymore. Doctors, family, friends . . . . even him sometimes; but, I just can't sit idly by and do NOTHING. Someone has to make a decision when poop happens so, if someone gets their nose out of joint . . . too bad. At least we'll be celebrating our 48th wedding anniversary TOGETHER next summer and he was able to dance with our daughter at her wedding and be here for all the other milestones we've shared over the years.

One doctor asked me if I was a nurse at one point. I just said, "Well, no, but I could be after all this." I love him. I love the life we've built and I refuse to let anyone take that away from us if there's a chance they just aren't looking at my husband with an objective amount of concern for us.

When I was fighting for an answer as to why his liver enzyme tests were out of whack, and I knew they were missing something (something that turned out to be a severe case of HEP C), I made a doctor take another look at his liver ultrasound as he was leaving the exam room and had his hand on the doorknob. He turned around, took another look and immediately asked us if our primary care doctor had seen the test results. Afterward, they later determined he was suffering from acute organ failure in the ICU, due to the misdiagnosed liver/kidney disease he had, depending on nothing more than the serum screening test they had run for hepatitis.

I realize this post is packed with a whole lot more than anyone could possibly ever want to read; but, if you've read it this far and can grasp the gravity of some of the horror we've both lived . . . THANK YOU!!!!

@suppiskey2surv I get it! My spouse sits silently by and does nothing/or say something. I read on my spouses portal that his neurologist said that I interrupted him. No, he did not understand the question. I do not care what they think. Long story short if it needs intervention I speak up. He told his Physical Therapists his back surgery cured his Parkinson's. No it actually decreased his pain ..nothing to do with his condition. Actually after the surgery he was really confused at times. I knew it was his meds. Reduced them after so he would not fall.I had to sit on the bedroom floor with him for over 2 hrs. I had him lay down and roll until he was able to get up and back in his bed. The next day the meds were decreased by me. He had less pain and was more congnizant. I felt he was improving slowly..but we got through it together. 🫂

@sillyblone

You and I must be twins, separated at birth or something. I swear we are kindred spirits!

@suppiskey2surv Well thank you. I just received from a person who said is was not about me. I say Caregivers save our loved ones from getting the wrong treatment and help them get cleaned up, cooking, cleaning, making appts. as well as taking them to their appts. , grocery shopping, washing their clothes, etc. I was going to respond ..but what is the use! Thanks for being my twin..🫂 💕

@sillyblone

People mean well. Sometimes, though, they just don't always choose their words as carefully as maybe they should, I guess.

I say, actually, it IS about us. Maybe not ALL about us, but it IS about us. It's about BOTH of us. That's the essence of this site, offering us, here, a place to vent and find support. If we thought it was ALL about us we wouldn't be able to live up to the title of CARE "GIVER". We keep going and "giving" because we "care". It's just such a pity, though, others (especially within the medical profession) that that isn't recognized and respected enough . . . Even sometimes by even the "patient".

I wish, at least, here at the local level we had more recognition. I've found MAYO much better at that but there is still much more that could be offered to the people who, when expected to get all those tasks done, we're offered a place we could go to for help and understanding. The "fairies" sure aren't around when you need them and not all of us have family or "fellow parishioners" to pick up the slack.

Living on this side of the picture is exhausting! And to have to beg for support only adds to the stress.

My husband's oncologist's staff literally told us that to arrange for some "therapy" and emmotional support for me, they would have to lie in their notes and say the therapy was being requested for my husband and that to get me the help I needed, they would have to have him request it for himself and go with me to the first couple of visits. Like HE needed anything more done for himself. He already was being given everything he needed before he even knew he needed it and, of course, what else, in the world, was he NOT getting from me at home? He already had all those home-cooked meals being made, the best mouth sore concoctions being found on the internet and shipped to his door, and his stomach injections being given to him so he wouldn't have to make another appointment to have them given at the doctor's office. The snow was being shoveled. The grass was being cut. The bed linens were fresh and his house was cleaned. So guess what. WE never got the professional help we could have used. I didn't want to add to his already ridiculous heavy burden, even though I was carrying one of my own.

Those "fairies" sure do a good job, don't they?

What made it impossible for me, during the worst of it, was the fact that even HE took it for granted sometimes. I get why the "patient " has to come first but, for gosh sakes, shouldn't the other side of the equation be recognized too and have a place to turn to for help and emotional support without being made to feel they're being judged as not being able to handle it, labeling them as whatever a pejorative someone thinks would describe them?

This stuff is impossible to deal with sometimes and it doesn't get done by itself. And if we didn't "care", we wouldn't keep "giving" of ourselves, our very sanity at times, to those we love.

@schmidty1212

LOVED your supportive words, my friend! THANK YOU!!! Sharing our stories and our experiences is something, I think, that makes the difference between losing our minds or (God forbid) the people we love (ourselves included) keeping something to ourselves that could help someone else.

We actually had a doctor tell us, "There's a reason they call it 'practicing' medicine. I say . . . . do your freaking job and "practice" it somewhere else! I know they're only human but, for pity's sake! Really? I can only surmise that many times "they" put their ego first (which I think happens more than not) OR they feel they need to dance like a puppet in front of the insurance company. Some of them are too eager to put their protocols and charts ahead of listening to the patient and/or the person who sees this stuff at home every day.

Like everything and everyone out there . . . there are good and players BUT, personally, I just wish it wasn't as hard as it sometimes is, beating the bushes, to find answers.

When my husband was going through chemo . . . granted this may sound terribly selfish . . . . BUT, everyone was falling all over themselves to get him everything from an extra blankie to something to make him more "comfortable", while I could have been a fly on the wall UNTIL, that is, a stomach injection would need to be given at home or a nutritious, inexpensive, tasty meal would need to be prepared. Until then . . . most folks could care less about me. Support and/or "therapy" of any sort for how I would need to take care of him at home wasn't offered . . . . . . had to be something set up for him before they would even consider such a thing for his wife of over 40 years . . . I couldn't believe it! Oh the insinuation was made, of course, that it was more than I could possibly handle and would they like to refer me to a psychiatrist if I was "depressed" about it. That's why I sometimes sound "resentful", even toward my husband at times about the fact that even HE wasn't someone I felt could turn to to help with all the stuff I was having to try and deal with on my own . . . I still feel that way, I guess, because he just, even now, can't seem to grasp how hard it's been . . . being told by friends and co-workers alike, "If you need anything", and then when you do . . . nothing but crickets.

I must sound like such a selfish, "whiney" witch . . . . but, for pity's sake . . . . where is a person supposed to turn when very little (if anything) is offered to the very person an ill person needs to survive the ravages of serious health problems.? I wish there was a group of some sort for people like us . . . . who are expected to: take care of ourselves, stay strong, exercise, get plenty of sleep and eat well while trying to hold a job, shovel snow, arrange for the lawn to get mowed, blah, blah, blah. I soooooo could have used help with all the nonsense we were going through, not only with the extra jobs at home . . . but dealing with all the hoops we had to jump through with the medical profession.

I think we all need to share what we've been through or ARE going through if any of us are to survive without being made to feel as though we're not part of the solution or need to take a pill to calm ourselves down.

I realize doctors are only people and the system isn't perfect anywhere BUT when something happens, that can lead to serious consequences . . . . change is required to ensure it doesn't happen again. And, usually, that "change" needs to happen from within the system by those who can change it. The rest of us, with all we have to deal with, can't do that. We're too busy trying to hold our lives together.

Thanks, again, for all the kind words. I really, really appreciate them!

@suppiskey2surv sorry for the delay in responding but it's been an up and down weekend. Everything you said resonates and you are not being selfish. You are being human. I've had both experiences: I've felt like I was a ghost and like the staff didn't even realize I was there and I've also had the very attentive and caring staff. When you experience the former it can be quite alienating. I felt like you were in possession of my thumbs and typing exactly what I was thinking when you mentioned that people don't understand fully how much we do. There are just some experiences that cannot be explained in words-things that cannot be fully undersood unless you've experienced then first hand and caregiving is one of those things. I too have seen my own health decline while caring for my loved ones. A coworker said, "Well, no offense to everyone else but you need to put yourself first. " I could've gotten angry at that statement but I realized that it wasn't that he didn't understand, it was that he COULDNT understand. He doesn't know what it's like to have to help my wife into bed because even a simple act like that of getting into bed takes her breath away. He doesn't understand she's just that dependent on me. He doesn't understand that I have to cook the "regular" meals for the rest of the family and cook another low potassium one for her, then wash everyone's dishes to boot. He doesn't understand that while washing dishes I have one ear on the master bedroom because, like last night, i hear her throwing up in the master bathroom sink, and i have to rush to her aid. Putting myself first means people don't eat. He doesn't understand any of that, but more importantly, he CAN'T understand that so i don't blame him for it or get mad. I just responded and said, "I hear you it's just a little more complicated than that" and I left it at that.
You are so spot on when you say we're busy trying to hold our lives together. Thats 100% what it's all about-putting one foot in front of the other, trying to get through each day while at the same time putting on the face, trying to remain positive when there is no obvious reason to be and constantly trying to tell yourself, "you've got this" and digging deep down for the strength to give negativity the middle finger because out loved ones need us and the need us to be their rock. And when we feel like we're reaching the end of our road wanting to throw our hands up, that's where people like and others in this group help. When I need to let out the figurative scream I now have a safe space to share with people that I know won't look at me as a whiner or complainer. I have a space with people that truly get it and understand that I'm not looking for pity and I'm not looking for sympathy. I just need to get it out in a healthy way so I can focus my energy on helping the people who depend on me.
Please know that in this space you are heard, your feelings are valid, they matter, and they are justified. If you're not sure whether or not they are, then lean on us and we'll remind you that you're doing the job of two people-pretty amazing when you think about it, and couldn't think of a more honorable reason for it.

@schmidty1212

No worries, my friend. The last thing this site, or any other, that offers us a place of respite from all the craziness and stress is that any of us should feel any added pressure in responding on any sort of timeline, right? We all have our share of ups and downs that carry with them probably more than most folks could ever understand. There's only so much time in the day and the last thing I think any of us should think about sharing our experiences is that it is yet another "responsibility" or that it's work.

You're going through . . . WE'RE going through things no one else could possibly understand unless they've been through the same. So, if a comment or reply doesn't happen . . . for whatever reason . . . we just need to trust that, eventually, it will be there the next time we need to see it.

Putting up a front . . . that face we all put on for others to see sometimes that others need or want to see is one I think we're all too familiar with. But the last place we should feel we have to do that is here.

Your response to that co-worker was the perfect thing to say. I get caught off guard sometimes when people say things they think will help but, unless, they've gone through what we've all been through . . . like you said . . . they just won't ever get it. Yeah, "putting ourselves 'first' " or the trite, "If you need anything", "Stay positive" . . . are all things said with the best of intentions but we all know what it's really like. Honestly, I despise the word "positive". That word and so many others have been redefined for me. How much more "positive" could we be than doing what we can for the people we love? I'm "positive" it sucks . . . but going that extra mile for the ones we love (including ourselves) is the most "positive" thing we can do.

Here's to a good week for all of us!

@suppiskey2surv it is amazing how so many of us are or have gone through the wringer for our loved ones. Your suggestions are great- my friends joke about how my van is still stocked for just about anything😂. I want to add that we can look back at our caregiving with few regrets! I am currently watching the wolves that my friend calls siblings (there is a reason my friend lives 1000 miles away) scramble and try to put on a show about how well they cared for their 105 year old mother while they were still sucking on her teat, her house, her social security for the last 40 years. Of course THEY are not paying for the funeral. But guess what knuckleheads- the family KNOWS. (It has been a source of friction for years). I’m looking forward to them getting the life they deserve now that she has passed. I am quite sure that they will come after my friend to support them- let them. I’m ready and still have some unvented rage that needs releasing. The bitch is back. 🤣😂