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Minx79 Posted April 2017

My caregiver burnout story so far.

I have not got treatment or proper support for myself yet, but I am aware a good portion of my issues are from unaddressed carer burnout. Life is more complex than just one aspect. I could list 5 big issues contributing to the mess that I am, but again carer burnout is high in that list.


Im almost 40, a mum of 3 children, an adult child who has autism and emotional dysregulation and who is currently estranged from me. A 12-year-old with autism who has social issues and some behavioural issues and is currently refusing school. And an 11-year-old who can't handle the stress at home so lives with their dad and when they are with us, there is high sibling conflict.  I do have 2 siblings, but both live a plane flight away and cannot help.


About 7 years ago I had a severe bout of depression brought on by taking Champix to quit smoking. As a sole mum I needed help, so I moved into my elderly parents' house to recover. While here, my mum's congestive heart failure got worse and I became her carer. The next couple of years were very difficult. Mum was needing a very high level of care and it was exhausting and I ended up physically ill from the sheer amount of work involved in keeping her going. Its 4 years since she passed. Meanwhile my dad got sick too. In fact when Mum was home dying, Dad was in the ICU with pnumonia. He has since gone downhill with a variety of illnesses. I became his carer. He is 80 now.


He is almost completely blind, almost deaf, has severe bowel and bladder conditions and other problems that see him hospitalized regularly and difficult to keep well at home. He has a permanent catheter and is bowel incontinent, with up to 15 diarrhea episodes a day. Because of regular infections, regular times when his blood levels are out of whack and being sensory deprived, he also has behaviour and mood problems that severely distress myself and my daughter.


I think I have been in carer burnout for years. But 18 months ago, in an attempt to regain a bit of my autonomy, I started dating and going out a bit. This just made matters worse. My family didn't appreciate it at all. And I made some crappy relationship choices, which I'm still going through. Overall it just made matters worse.


I feel suicidal ideation almost daily. I doubt I would act on it as there is literally nobody to pick up the pieces and support my dad and daughter at home. But its a vicious circle, the reason I keep going is because there's no other choice and the reason I feel so distressed is theres no way out lol.


I love my dad dearly, but his needs are pretty high and I feel so frustrated with having to do so much for him when I can't take care of myself right now. And his moods and words just do my head in. I do what I possibly can for him, which is not perfect because im so unwell myself, physically as well as emotionally, I actually have a disability myself. But he is constantly disappointed with me and annoyed. Nothing I do is good enough. He never used to be like this. Neither did I. I feel so sick of doing all the work, 3 times a day I have to give him suppositories now, on top of cleaning up poop and urine constantly. He won't even pull his own blanket over himself at bedtime. Maybe 2 years ago I would have wanted to do that out of love and care. Now I feel frustrated he doesn't even try and wants me to do everything and every time I do it I am thinking negatively. It's horrible to feel this way. I do love and adore him. But burnout has made me bitter. If I leave the house he always says negative things or gets crappy. If I'm out too long I get home to a barrage of abuse, I'm a liar because I said I'd be an hour and I was 2. And so on.


I am past ready to find a nursing home place for him, but it's complicated after sharing a home and finances for 7 years. I am having to draw on my aged pension to pay off debt and make sure he has money and I have money before it happens. All while being so depressed and dysfunctional I could'nt organize my way out of a paper bag. Bare minimum is all I can manage and that feels too much. So yeah, it's a hard time. I just wanted to write some of it down. Thanks for reading. Im not in the U.S.A. so it's different here and what I need to do is call our countries carer helpline, get counselling, and make a plan to get out of all these problems. Thanks again.

cwillie Apr 2017
I've just recently put my mom in long term care and your words "its just hard to rescue yourself when you're drowning" are eerily similar to one of my own posts. Caring for a fragile elder, especially when they can no longer return our love or show appreciation, is wearying to the soul. I knew when I found myself getting angry and frustrated more easily and more often that something had to change, it wasn't fair to my mother and it was poisoning me and I feared it would ultimately destroy any good memories and replace them with the black thoughts that had become so prevalent. I started by making calls to find some respite, I urge you to do the same. You can't make sensible plans when your whole day and thoughts are consumed with caregiving, stepping away briefly may allow you to find the lifeline you so desperately need.

Minx79 Apr 2017
Dad has ulcerative colitis (thats his bowel problem). It is being reasonably aggressively treated given his overall health and that treatment isnt working and hasnt for a year even after multiple hospital stays. Problem is he cant have surgery hes too frail, and he cant take the strongest meds as they knock out the immune system and he already gets life threatening infections constantly (in his one partially functioning kidney and his bladder and his lungs). He cant even take steroids any more well not oral ones as they make him have delusional and aggressive episodes. So he just has 1 steroid at night via his rectum. The other meds he has for it have stopped working but we still use them. So its proving very difficult to treat.

You're right im far less use to him and my children because my own needs are not being met. I understand the theory its just hard to rescue yourself when you're drowning if that makes sense. X

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GivingItMyAll Apr 2017
There is a reason that airlines ask that in case of emergency, we take care of our own oxygen needs before taking care of anyone else's. We are no good to anyone if we are in need. I want to assure you that you are not alone in your thoughts and feelings, caregiver burnout is a very real thing.
Throw in a few things like autistic children, single motherhood, and financial issues and you have a real pot of stew. Co-mingling of assets is an issue that always seem like a good idea at first. See if you can sort that out so that you can see what your father would be eligible for on his own income. You need help, it is very difficult if not impossible, for one person to do it all. I wish you good luck and hope that you follow through on your plans for counseling. If you are not taking anti-depressants, please look into that with your own doctor. The bowel issues alone are enough to make anyone burned out. Can the doctors not sort that out? Could it be dietary? Lactose or gluten intolerance are two things I would look into.

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