When Caring Becomes Too Much: Recognizing and Coping With Caregiver Burnout

 I am writing about this topic because writing helps me reduce my stress. I know although I feel alone in this journey sometimes, I am not, so I’m hoping by writing about it, I will help others to feel understood and validated.

I have written a blog post in the past about living with someone with chronic illness, this post will be similar to that, but more on the feelings of burn out. I think like me, many care takers don’t vent or talk about their feelings as much as they probably should. I can only speak for myself but I suspect that there are probably many who feel the same way. Most of the time I don’t say how I’m really feeling because I don’t want to sound like a complainer. Besides, do people really want to know how I am feeling? Probably not. Sort of like how the majority of people ask “how are you?” In passing, but they really don’t want to know, they are just being polite. If they really wanted to know, they wouldn’t ask when passing by, they’d ask when they planned on staying awhile.

I think part of the reason I haven’t gone into depth about my frustration, sometimes anger, sadness, exhaustion both physically & mentally is because I don’t want to sound like I don’t love him or that I’m not grateful that God has chosen to let him live against all odds. I also don’t want him to feel like a burden to me, because that is not what I’m saying. If I had to do it over again in another life time, I would, because he is worth it. Although I do get angry and frustrated with Mike, I think I get more frustrated with the situation. Lately it is just one thing after another.

I was at work sitting in a professional development class, when I felt my watch vibrate with a text message. It was Mike, he was at dialysis. His text message said “I have a video call with Jameson. I have an ulcer on my foot that needs attention. It just started, wasn’t there Tuesday” (this was Tuesday, so was he referring to the week before?). This text was followed by a picture of the ulcer. I felt the blood leave my face and tears spring to my eyes. How could he have known about this and not told me? How could I have missed it? After work when I saw it in person, I was scared. It wasn’t good. I took a picture to document it. He started the antibiotic his pcp (Jameson) prescribed to him. The following morning, I also had an appointment with Jameson and I showed him the most recent picture. He agreed with me that Mike should go to the ER to start IV antibiotics. Mike was supposed to have a visiting nurse that day, I called her to tell her I was going to take him to the ER and she agreed, she too would have sent him out.

It’s been a little over two weeks since Mike has been home from the hospital. He’s been doing pretty good, but it’s been a slow recovery. The needs are never ending on top of working and all of the other demands of life. Although it is physically draining, it’s the mental part that I feel is wearing me down. I don’t know if it’s the medication, the build up of toxins from his failing kidneys, diabetic brain fog or what but cognitively, his confusion is increasing at times, which causes him to be more argumentative. This is the most draining because he doesn’t appear to understand what he is told by his health care people, or he easily forgets. I am not able to be present for every conversation. For example, he was told some time during dialysis in the past week, that he had this developing sore on the bottom of his foot that he needed to watch. He didn’t tell me about it, therefore I didn’t know it was there or that I should be keeping a close eye on it. I do know I should be checking his feet daily because he is diabetic but honestly, I don’t always think of it with every other thing I am doing between the time I get up and the time I go to bed. He told me, that the dialysis nurse told him about this sore on Tuesday or Thursday or Saturday, which is what he also told the ER doctor and nurse, he doesn’t remember. Then in the next breath, he told me he didn’t think it was that bad. Which is exactly what he said about the last 2 1/2 toes he had to have amputated. Is he really that aloof or does he really not remember the seriousness of his complications with diabetes, compromised immune system, his susceptibility to infection and his limited feeling in his feet due to his neuropathy? Or is he in denial? Sometimes, the things he says and does or neglects to say or do, I think he thinks if he ignores things, they will just go away. He tried to tell me that he thought the antibiotics would heal it, but he knew about it supposedly for days before he got the antibiotics. It had gotten worse since it was originally seen by the dialysis nurse and at his next appointment, she got him a Telehealth call with his pcp, who put him on the antibiotic. I found out about it after that Telehealth. At this point, the once “sore to watch” has become a deep, infected ulcer. When I saw it, I knew he needed more care then the original antibiotics could touch. Another trip to the ER just 2 weeks after his 29 day hospitalization, was warranted. Another day of me using a sick day. This irritates me, because had I known when he was originally told about it, this could have been avoided. So now, I used a sick day, let my students and coworkers down and lost pay from my second job. 

Thankfully, it wasn’t too late. As I thought, the infection was not good, but it had not reached the bone yet. In the ER they gave him a jump start of an IV antibiotic and sent him home with a new (kidney safe) antibiotic. Hopefully it’ll be enough to fight this infection and he won’t lose his foot.  

Yesterday, waiting in the ER for around 6 hours was exhausting enough, but after picking up supper, his new medication and settling in at home, I started to go over the hospital notes, reminding him of how and when he needed to take the medication, the arguing began. He was totally confused, arguing that the nurse said that he was to take both antibiotics “in the morning, after dialysis” dialysis starts at 10:30 am and ends around 2:00 pm, needless to say “after dialysis” is not “in the morning”, it’s in the afternoon. I would not have argued this point with him, but the way he thinks, he would have taken it in the morning and after dialysis, especially because he thought the nurse said to take BOTH antibiotics, when in fact, she did not. I was there, I heard the directions and they were on the discharge papers. She did say “in the morning after dialysis” but in her defense, she didn’t know what time his dialysis is. It also stated that he was to STOP the original antibiotic prescribed by his pcp and start the newly prescribed one from the ER doctor. It took a 10 minute argument to get him to understand these directions. I still don’t know if he actually understood or if he just didn’t want to argue anymore. These are the things that are wearing me down because with his confusion, argumentativeness, lying, or misunderstanding…whatever the case may be, it’s dangerous  and he could do more harm than good. For example, although the doctors use the most kidney safe antibiotics, taking two prescriptions as he planned to, could be too much and could damage his kidneys further.

I am so grateful for our village of friends, we have had so much support in the way of prayers and well wishes. We have a friend who came from Florida to stay for a few weeks to help Mike while I work, in hopes he will improve so I can eventually leave him alone again. We’ve had some friends visit, gift card to help with some meals and recently a gift from our local church to help with an outstanding bill. Drivers to and from Dialysis 2 x a week (I do the third). We could not be more grateful for these people and that God has touched their hearts to help in one way or another. As much as I feel I am struggling some days with caretaker burnout, I can’t even imagine how hard this would be if we didn’t have this village of friends and prayer partners. The little bit of advice I have received when I have vented and the suggestions I have read on line are easier said than done. 

Here are some of them:

• Set boundaries- it’s ok to say “no” or take breaks… Is it really? How?
• Ask for help… I have with rides, prayers and encouragement/visits for him, but something’s I cannot ask for help with. I can’t have someone else take on the arguments he wants to have, because he isn’t like that with others, or at least not as bad. He isn’t going to let anyone else clean & bandage his wounds (with the exception of his foot and dialysis port) or help him shower or any other personal task, nor would I expect him to. He deserves his dignity.
• Prioritize self care… Besides writing in this blog and praying, or an occasional, mindless tv show on my Ipad in the bedroom, I’m not quite sure how to prioritize myself. Although I am going to attempt a night out on Saturday this week while our house guest is still here. (I’m trying).
• Find a support group, therapy, church support, care giver groups… umm, when? There isn’t enough time in a day.
• Recognize your need for change: alternative care options like home health aides or assisted living… again, he won’t let anyone help him with personal matters in our home and assisted living is out of the question. He’s not going anywhere and I don’t want him to. 

Then of course there is a different kind of emotional toll, besides the frustration. There is the emotions I feel watching the man I love, decline. I feel like we’ve already gone through so much loss. The dreams or expectations I had for this chapter in our lives, have been shattered. We’ve lost so much, but there is still so much more to lose and that weighs heavy on my mind. 

The guilt is another thing. I feel guilty just expressing some of the things I have in this post. Sometimes I feel guilty for feeling overwhelmed at all because I can’t even imagine what it feels like to be him. To be the actual one who is in chronic pain and who is in fear of dying and the one who has lost his independence. At the same time, I try to cut myself some slack by admitting that it’s not a competition of who has it worse. His health and this life affects both of us, just in different ways.

So in closing, if any of you reading this is in a similar situation, Have you ever felt care taker burn out? If so, can you share how you’ve dealt with it? Have you been able to find time for self care?  Are you able to not feel guilt? Common sense tells me I am as important as him that I am caring for, that my feelings matter and that I’m not a bad person for feeling exhausted or overwhelmed but whether I know that logically, it doesn’t always feel that way.

What are your thoughts?

* I didn’t take this picture for the blog, I just happened to take it yesterday in the ER and thought it was perfect for todays post.