Help for the Care Partner

This blog post was made by Bill Emeny on March 16th, 2017.
Help for the Care Partner

I have been an active care partner for over 4 years and not once has anyone asked what they can do to help me. They did tell me that I should be careful of caregiver burn out. They even mentioned the possibility of Sue going in-clinic for a week or two. Considering how dialyzing in-clinic makes her feel, how could I possible do that to her?

What I need to lower my stress level is for Sue to feel better; no, I need her to feel good. Good enough to become an active part of my life again. I need her diarrhea after treatment to go away, I need her fatigue to go away. I need her cognition to return. I need her heart palpitations to stop, and her blood pressure to stabilize to a reasonable number. Dialyzing with her 5 days a week is a small price to pay if she could feel really good again.

I don’t see how the front line clinic staff can directly help me reduce my stress levels, but I can tell you what I have learned and what has helped me, and maybe it will help someone else:

  • Maybe spending 15 minutes at each visit reviewing alarms and what may have caused them and how to prevent them would help. Alarms that cause the blood pump to stop are hugely stressful.

  • Maybe additional information concerning the dialysis process would help. Information like how potassium affects blood pressure, what happens when any of the nutrients are depleted in the blood during dialysis, what are the symptoms? How do I prevent it? How do I know when I am facing a clotting issue? After 4 years, I still don’t know. How do I know when Sue’s blood pressure is going to tank? Is yawning a reliable indicator? There is no stress like the stress when she passes out.

The point that really needs to be made, over and over again, is that it is not just up to the doctor to make the patient feel better again, it is up to the patient and the care partner as well. They have to advocate for themselves: hard. They have to step up to the plate and do what is necessary to feel better. If your labs are good and they are consistent and you still feel lousy, then there is something wrong with the prescription. Do what you have to to get it fixed. Change clinics if you need to get a doctor who cares about how you feel as well your labs, but do your part first, keep your labs consistent.

Maybe the dietitians could do more. Maybe they could go into a teaching mode. Show patients and their care partners how to find nutrition information. Maybe an easy meal plan hand out each time with nutrition totals for each. Our dietitian says people don’t care enough to make it worthwhile. Maybe some instruction and training to make it easier would help. Lists of popular foods with nutrition values of phosphorous, potassium, sodium and protein might be of value.

Are dietitians taking the easy way out? They need to convince patients that they need good eating and drinking habits if they want to feel better, and then convince them to do something about it. It really does help.

Planning and fixing a meal for a person on dialysis is an exercise in hopelessness. After dialysis, Sue isn’t very interested in eating and it doesn’t matter what I make, it doesn’t taste good to her. This is a huge source of frustration for me, especially after spending 4 stressful hours with her on dialysis. As her prescription gets closer and closer to her individual needs, the necessity of maintaining a strict diet lessens, which in turn enables us to eat out more often. This is a huge stress relief.

Patients need to recognize that they are putting their care partners through hell along with them selves when they eat and drink indiscriminately. I hear stories at the clinic of patients drinking two or three liters or more a day. How can they expect to feel good? Maybe they ought to go back to in-clinic care while they reconsider their habits.

I wonder if a forum of some sort for care partners would be of any value. I have a feeling that it would probably end up being a bitch session, but maybe venting to someone who can relate to your frustration would, in itself, be a form of therapy.

My hat is off to all who care enough to be a care partner.

Comments

  • Summer Foovay

    Mar 19, 11:17 AM

    I've been married to my husband for 27 years. When we first made a commitment he informed me he wouldn't be alive much longer anyway,. Born premature, he had CKD from an early age from congenital causes and was told he would be on dialysis by age 22. Then they walked him through the hospital dialysis center and scared him to death, so he decided he would rather die. When he moved in with me I researched CKD and got him on a vegetarian diet, herbs and vitamins to support his health. He did not start dialysis until he was 45. At that time, he conceded to give it a try for my sake.

    In center hemo has been a nightmare. We got him on peritoneal dialysis and it was great for six years, but due to other health issues we had to go back to in clinic hemo this year. Hopefully, soon, we will get him on home hemo.

    My biggest peeve with in clinic is they treat me like I am his taxi driver. They have outright lied to me about his treatments, and accused me of being the problem. I am frozen out and stonewalled, and then blamed!

    I've gone from a team on PD who loved how involved I was in his care, to people who tell me I don't have the right to know how he is doing. But everything that goes wrong is our fault. Now they hate me because I started insisting on records and information - and turned them in to the ESRD Network because he was not, in fact, getting his prescribed treatment. The problems have been corrected, but they really hate me now! As long as my hubby is doing better and feeling better, I don't really care.

    The last year has been really tough. Because I am involved in every aspect of his health care - and he wants me there - we have had doctors literally threaten to have me thrown out because I asked questions! On the other hand, if I had not been there he would be dead by now due to detrimental side effects of some of the drugs he was given. He certainly would have given up.

    I am getting burnt out alright. Burnt out on everything that goes wrong being MY fault, but when I ask for help, instructions, or advice, told to stay out of it. None of my business.

    When we did PD, we learned a lot of things they don't teach you. Sounds like HH is going to be much of the same. I'm so thankful for the resources of the Internet, where I can get some actual information and answers for my questions. When we were on PD, I had access to his nephrologist and a great team and they would answer my questions and work with us and I was so grateful for that help. And unlike the in-clinic team, they appreciated and encouraged my involvement in his care.

    I've written a guide "Layman's Guide to Peritoneal Dialysis" on the Kindle to share the things that we learned while on PD. I hope maybe someday I'll be writing a guide for caretakers & patients on home hemo! And heaven help them if I write about our experience with in clinic hemo. But I'm a writer, it's what I do.

    When I'm not taking care of my beloved hubby :D Yes, a couples or families whole life does end up revolving around dialysis, one way or another. But my husband is 50 years old and still here and that's worth every minute of it.

    But it sure isn't something they tell you about when you are making that transition.

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  • Amanda Wilson

    Mar 17, 9:24 PM

    I had the best experience with a dietician that I have had in many years today. I am a very experienced dialysis patient, and today I sat down with mine and learnt things I didn't know. They are not all bad.

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  • Gale Schulke, RN

    Mar 17, 9:03 PM

    Things are changing at one Dialysis Company. We call it "re-imagine home". We are putting the words "Humanizing Dialysis" into meaning. I am so fortunate to work for this company.

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  • corlyn altier

    Mar 17, 6:33 AM

    I've been a dialysis care partner for my husband for 15 months. I run a business to support us then schedule in 5 treatments for my husband each week. I also plan, shop for and prepare renal appropriate meals for him. I coordinate doctor appointments and deal with lab draws, analysis of labs, etc.

    In our first year we've dealt with stenosis in his access, staph infection, endocarditis, septic pneumonia, failure of access, cvc placement, creation of new access, severe complications with seroma drain issues requiring the installation of a temporary JP drain in his arm. In the last month we have finally had the cvc removed.

    Through this journey I have found that everyone who we deal with in this journey is not speaking from a position of personal experience. Doctors, nurses, social workers, technicians, 'advocates'. All of these people like to THINK they know what this is about but the reality is that this is how they support themselves. This is THEIR job, this is OUR life!

    I have learned that the dialysis industry considers me to be an expendable, non-expendable commodity. My quality of life is not of any importance. The fact that my entire life is now consumed by dialysis is a fact that I accept but honestly I get sick and tired of the condescending attitude I get from those who earn their living from this very profitable industry! My response when someone who isn’t a care partner says that they understand: ‘ You may know HOW to do this but you’re not walking the same path, you’re not crying the same tears, YOU can go home at the end of the day, this is OUR life, it is hard, it is lonely and often it is heart breaking!

    I was an engaged care partner for my husband for 10 years prior to dialysis by managing his kidney disease with herbs and diet. When we researched the various modalities available and chose HHD.

    After many challenges (and actually during many of the setbacks for the most part) his labs are very good to excellent consistently. He feels good and on his skip days enjoys playing lead guitar in a rock band! I believe this is due to a combination of proper nutrition, effective dialysis and an appropriate level of engagement between myself and the various healthcare providers.

    From the beginning of this journey I’ve asked what resources are available for care partners? I’ve learned that other then hollow and patronizing ‘kudos for a job well done’ there is nothing.

    In order to build an effective and sustained home hemo program the key is to develop a comprehensive program for care partners. I a now in the process of developing a guide to address this need. Without a care partner a patient is in- center. Those who are on home hemo often end up back in-center due to care partner burn out.

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    • Bill Emeny

      Mar 19, 11:02 AM

      " I believe this is due to a combination of proper nutrition, effective dialysis and an appropriate level of engagement between myself and the various healthcare providers."

      Right on Corlyn! You've hit the nail right on the head. Our experience has been very much the same.

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  • Lindsay

    Mar 16, 7:16 PM

    My husband is on peritoneal dialysis, so while we don't deal with home hemo, I understand where you're coming from. The machine is our biggest frustration. The buttons are SO SIMPLE and yet it beeps for seemingly no reason. And they give you a 400 page manual. So when it goes off in the middle of the night/treatment and starts beeping we're supposed to wake up and then dig through that to find out what the issue is? Not practical.

    I am sorry that your wife is having such a bad reaction to HH. It is so hard to watch your partner go through this, and if PD wasn't working we would be doing the same thing. I am hoping he won't get peritonitis and we won't have to. You should definitely set up a forum just for caregivers. I would join! There are some things that you are going through that most people won't understand.

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  • Elizabeth Miller

    Mar 16, 2:44 PM

    My care partner on a average day will be up for twenty hours, so I can do treatment at home and he can still work so we can pay for me to stay alive. There is no way we could make it on what I get for disability. Our whole live is round my kidney failure, form treatment, doctor appointment, what I can and can't do. My husband has taken over clean the house on top of everything else for I can't do to much for I'm so tried. I said I would go back to center but he doesn't want that for he had seen what that did to my body and made me weaker. If I had learn about home treatment earlier I feel I would be better. Right now treatment takes six hours four times a week to stay alive. Had we gotten any information or help from the center nope in fact when they won't work with us on appointment times or when we was training it was their time frame. I would love to see more information out there for card partners and what to even look for, for the two min. You have to fix what is very stress full, you are told to call your nurse while the time you get through the to them your dead. Or call 911, tell me what ex doctor or paramedic knows how to deal with ckf? When I go to a ex or see a doctor I have to explain what I need or even what ckf is. You would think that with the numbers so high with people with car that there would be more training. Its a daily fight for both the care partner and the patient to keep living, yes even the care partner has to fight to keep there love ones alive and not quit.

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