Survival Tips

I think you have it together. I have a first aid kit as well. Actually, I have three. Well stocked and believe me you will be thankful when there is a fall or a scratch that you have to attend to.
We were traveling home from a visit with family as well as a funeral. I cannot stand the long line at Buccees. He asked to go and l did. He fell and it was because he will not use his walker as needed. I was pumping gas and all of a sudden I heard all of these people saying are you ok. I thought no it can't be. He was on the ground pouring blood everywhere. I asked everyone to please give me some room . I asked if 2 guys could help in the front seat of the car. I started packing his nose, cleaning broken skin. I had an anti botic ointment I used . He had a pressure dressing in place and he had all his scrapes covered. I still had the gas handle in my car. One man thought I might drive off. Of course I had to wait in line to get the pump started again. Next trip no large places that cause this kind of bedlum. He also knew I was upset by the way as I was quiet after. He ended up saying he knew it was his fault. So before he gets out of the car the walker is at his door. His skin still gets scratches and need to be fixed as he also has orthostatic blood pressure. So no bending over. I cannot tell you how much it helps. You, are doing the same things I do. Kudos to you. Sorry.. so long. Prayers and hugs your way

Hello there. This is my first post and totally out of character for me to join an online support group but I needed a healthy outlet and I think a discussion with people who understand what it's like to be a caregiver could be just what I need to help me continue to put one foot in front of the other. I'm 45yo and have been happily married to my wife for 8 years. She had a kidney and pancreas transplant in 2008, has anemia, heart failure, and GI issues. If we're in the ER 5 times in a given year, it feels like that's a light year at this point. So, that's my background. In response to your post, I want to say first of all, not to apologize for posting. If you're on this forum that means you care and I think anyone that is a part of the caregiver community already has enough outside factors taking their licks on us that we don't need to do it to ourselves. I think you're incredibly brave for sharing your story and you must have tremendous character for hanging in there and continuing to brush yourself off and get back up. As to the question of communication, I'm not really clear on who the resentful one is in the relationship but from the way you are describing it, it does sound a lot like my household. My wife usually thinks things will get resolved on their own while I am the one that makes sure the laundry is done, makes sure we have a "go" bag prepared, like you mentioned, and it seems like she thinks that everything got taken care of magically, when in reality it takes a lot of time and work to plan everything. I know that this response isn't exactly what you were looking for-you were looking lore for tips or guidance but I think that's kind of the point is that we're all just kind of faking it until we make it. None of us really have.it figured out and I doubt we ever will due to the ever evolving nature of one's situation. But know that you arent alone. The best I can offer is just to continue making the effort and don't stop trying to communicate your feelings and if something is truly important to you, don't be afraid to make it known. Keep hanging in there and celebrate any victory, no matter how small.

Hi Dawn,
Great ideas! My husband had lung cancer and we went through a lot of unexpected emergencies etc. I did pretty much like you did. I had everything ready to go, including many printed copies of all his medications, reactions, doctors' contact information etc. I had a huge purse which was so handy for everything even a banana and my medications. Otherwise you are going to be without things or spending a lot of money at the hospital cafeteria. Also we found out early on, that when my husband ordered dinner when he was in the hospital he ordered an extra serving of yogurt for me! It worked out perfect and we could eat together!

As far as your communication issue, tell your husband how much you love him. He's obviously dealing with a lot. Also ask God for guidance in this matter. I'll say a prayer for both of you.
I wish you the best.
PML

@schmidty1212 I’m not sure that anyone has welcomed you to Mayo Clinic Connect, but now I have! You’re welcome to have some rants when necessary! Just talking with other caregivers and having helpful suggestions makes the rants disappear! I’m glad you joined the group and hope you’ll like it!

@schmidty1212

Were we separated at birth? Sure sounds like it. Haaa.

Your words made me do a little self examination. You're so astute in, basically, raising the question, "Who is/has resented who?" My husband has admitted that he used to resent me more than he does today in rejecting some of what we've been/are told and in doing my own research and questioning. But he admits that it has saved his life many, many times. He's told me that he thinks we should have trusted all their medical expertise and diplomas at times. And I suppose I have, and still do, "resent" his inability or unwillingness to talk to "them" more, not to mention talking to me about how it has affected him . . . both physically AND emotionally. So, I admit that I should work on some of that a bit more and realize he's just unable to add another layer of something to what he's already dealing with.

Boy, you sure have been through a lot yourselves! Sounds like you've had to board the same sort of rollercoaster we find our ourselves on sometimes too. Makes me nauseous 🤢.

Things are, thankfully, at a pretty quiet point for us right now with them telling us things look stable, but that's actually what sometimes bothers me more, in a lot of ways. It's sort of like sitting in that seat on the rollercoaster, climbing to the top when you can see how high that next rise is, teetering there, and looking down toward how far a drop awaits you. Thus, the reason why I've decided it's better for me not to even get on that dang thing in the first place anymore. Putting myself somewhere on middle ground, avoiding that "drop", has leveled things out for me.

My husband's medical pattern has usually been things seem to resolve and everything looks stable for a while but then something explodes to set it all on fire again and things get serious. Just when we've started to think everything's okay, something happens and we're back on that dang terrifying ride. I know I'm probably preaching to the choir here but it helps to know that there are those who understand just how scary it is to get aboard that carnival ride. 20 years of all those ups and downs has been horrifying and so horrifying. It's taken such a toll on us both. And because it's seemed, at times, I've been in that little seat on the wildest ride we've ever been on, facing all of it by myself and all it involves, from keeping our lawn trimmed to preparing meals and keeping watch over how and what they're putting into his IV drips at the hospital or chemo clinic, it's just becoming too much for me to think of having to do it again. I've let my own health, at times, suffer because of it, which at 67 now, I simply have had to realize cannot happen any longer. I now realize that I will simply have to set certain limits as to just how much I am able to do. He, too, has had to do the same. He'll be 70 next month and has had to take a look at what course of action he is willing to take if/when we may have to face another health challenge. Hopefully, things have screeched to a dull roar for now. I hope the same is true for you and your wife. Finding this forum, for me, I think will be a place of comfort and support. It certainly has been so far.

THANK YOU!!!

@pml

You're so sweet. Thank you!

@pml

Good to know it holds true . . .

Great minds really DO think alike!

Thank you Dawn for your wonderfully helpful list. You and your husband have been through so much these last 20+ years and are still here battling on. You are an amazing advocate and cheerleader for your husband. Sending hugs of encouragement to you both. Dana

@becsbuddy thank you. I appreciate that. I'm already seeing the value in sharing my story with people that can understand my point of view.

@suppiskey2surv this is exactly why I thought this group would be a healthy outlet for me! To find out that my experiences are unexceptional and that others go through the same things that I go through. We have so many similar feelings/experiences. To the point about your husband displaying signs of resentment for you questioning the medical professionals: I applaud you for being his advocate. Times have changed and we should no longer look up to doctors as demigods. I came to the realization throughout my wife's journey that they are human, make mistakes just as much as any of us, and are not smarter than me. They are the subject matter expert in their field but sometimes they might be a little too analytical or cease to step back and look at things from a common sense perspective. My example is actually from my own medical issue and not my wife's. During an annual checkup my cholesterol came back high so they treated it with atorvastatin. OK, makes sense. It IS the go-to drug to treat high cholesterol. However, during follow ups my liver enzyme results we coming back elevated. I tried so hard to draw their attention to the correlation between my liver enzyme results being elevated and when I started the atorvastatin and they responded that while the enzymes are high, they weren't dangerously high and atorvastatin is a good drug for high cholesterol. I couldn't understand why they were pushing atorvastatin on me so hard. Is this the ONLY cholesterol medicine in the world? There are no other options where I could have my cake and eat it too (reduce my cholesterol but not damage my liver)? I pushed and pushed and finally the PA agreed to put me on Ezetimibe and retest after a few months. Sure enough, at the next blood test my cholesterol was good AND my liver numbers were good. So it was possible to find an alternative medication that didn't also cause elevated liver numbers. Had I not been willing to advocate for myself and had just taken a "the doctors are always right approach " I would never have achieved the outcome that I did. So I am a firm believer in questioning the doctors. I have also discovered that doctors also sometimes are only knowledgeable in their area. When we first started seeing cardiologists for my wife's heart failure, the cardiologist looked back at her history and stated that her blood pressures had been consistently high in all of her clinical visits dating back 10 years. He was actually pretty angry that no one had raised it as an issue. But most of her history was with nephrology. So what I learned was that when the kidney team sees a blood pressure of 145/85, they simply record it, don't even blink, and move on to doing the kidney stuff-doesnt raise alarm bells. But if you were to go to the cardiology team with those same numbers they would be freaking out saying, "We need to address this immediately! This will have a bad impact on your heart of not resolved ASAP!" So they're not bad people, it's just that they only know what they know and their knowledge can often be limited to their specialty area but we somehow expect them to know it all when in reality that is an unrealistic expectation. Your comment about the IV hit home with me too. I saved my wife from getting an unnecessary iron infusion before. They had already given her an infusion a week prior at the Dialysis center but for some reason the ambulatory infusion center didn't see it in the computer. I think you are doing all the right things! We relate on so many levels. I am happy that you're moving along at a dull roar right now but I totally get the feeling that some issue is right around the corner and even during the quiet times you still feel on high alert. Thank you for trusting this community with these very personal feelings and stories. Hearing others go through the same things helps so much!