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.