SEJAfoa2021 Asked June 2021
Anyone on here familiar with the term compassion fatigue?
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I'm caring for a family member full time, he has M N D. When I first moved in I knew it wasn't going to be easy but I thought I was strong enough to handle anything coming my way. Fast forward to now, 4 months later, I can honestly say I gave up months ago but I'm still here pushing through the pain simply cause of my belief that we shouldn't put our family in those homes. I'm anxious all the time now and sad heaps and I've been desensitized to almost everything. I found this group this week just thought I'd add my 5 cents in with the hopes that someone out there can relate and or maybe have some advice of something I haven't yet tried.
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The middle ground is where I have found both solace for myself & still ability to help. Not as The Fixer of All Things, but as an *Advocate*.
I will say this, I also read MANY accounts from people who have siblings and other family members who just don't help out at all. This might be the saddest. They have us. They know who we are and how we feel guilt and they rely on it to get out of being caregivers themselves.
The whole situation is really kind of tragic as it involves huge chunks of our lives spent feeling out of control of our situations. And people can give all the psychobabble advice they want (you CHOOSE to do this, you can go find help, put your loved one in assisted living, etc.) but all of that requires energy. And if I've learned one thing out here it's that we're all really tired. Exhausted from managing our own lives and the entire lives of our LOs who need the help. Some days I can't even make a decision about what to make for dinner because my brain is just fried from the multitude of other decisions I've made that day about someone else's care or what they needed.
This isn't an easy life by any stretch of anyone's imagination or definition of 'easy'.
I feel for you. The best advice I can give you is to find mental health help however you can. We only have this one life and one brain. We may have to give away all of our time to someone else but we're the ones living in our heads. We've got to do all we can to try and make that a positive place to retreat to.
If you do have any time at all to read, there are many good books about caregiving and how to cope and manage it for yourself. I know sometimes we're too tired to even think of picking up a book but even daily affirmations help. One positive thought to start your day sometimes feels like a monumental achievement in self-care.
I wish I knew the answer and could help ease your burden. It's a hard place to be in life. Hugs to you :)
One aspect was that people in caregiving positions, especially nurses, have higher levels of oxytocin, but that they're also more vulnerable and subject to burnout from the demands of caregiving.
I think that's one of the reasons I often turned to music for calming and soothing while caring for someone.
SEJA, you're not alone. What relaxation methods have you tried? Meditation, Yoga, walking, or just getting outside? Have you read any of the articles on Forest Bathing? (It doesn't relate to cleanliness in the forest; it addresses immersing oneself in nature and using it to calm a troubled mind, to relax, and refocus.)
The closest comment and observation I could find about the potential detriments of oxytocin are:
"The potential social benefits of oxytocin in most people may be countered by unintended negative consequences, like being too sensitive to emotional cues in everyday life.”
Cf, a psychological study: https://www.concordia.ca/cunews/main/stories/2014/01/21/-love-hormone-oxytocincarriesunexpectedsideeffect.html
"When you take acetaminophen to reduce your pain, you may also be decreasing your empathy for both the physical and social aches that other people experience, a new study suggests.
Researchers at The Ohio State University found, for example, that when participants who took acetaminophen learned about the misfortunes of others, they thought these individuals experienced less pain and suffering,when compared to those who took no painkiller.
"These findings suggest other people's pain doesn't seem as big of a deal to you when you've taken acetaminophen," said Dominik Mischkowski, co-author of the study and a former Ph.D. student at Ohio State, now at the National Institutes of Health.
"Acetaminophen can reduce empathy as well as serve as a painkiller."
This is a very debilitating desease. The one man I knew who had it also had a Nurse for a wife. If not already, you are going to need to eventually do EVERYTHING for this person. I see from your picture you are a man. The life expectancy of ALS is 5 years. Don't think you can do it that long if its hard after 4 months. And eventually CNAs are not going to be able to do the job. The person suffering from this desease will need Skilled Nursing. So, a SNF will be needed before its all said and done.
That's why you're burned out.
You are all those things 24/7 AND you are burning emotional energy caring ABOUT as well as FOR your loved one. The caretakers at nursing homes are trained to do their jobs, plus they get to go home every night and tune out the stresses of the day, recharge, and come back the next day. You don't. You might as well be piloting a 747 with no training.
There is no shame in placing someone where their physical needs will be properly seen to by a team of professionals. In fact, that IS caregiving -- seeing to it that they receive the best care possible. Martyrdom is not the best care possible.
Your loved one will not improve no matter who cares for them. However, they're likely to experience avoidable issues in your care than they will in the care of the professionals, such as bedsores, infections, choking, falls, and a litany of other things I'm sure you wouldn't want to happen to them.
What you ARE qualified to do is to love that person and be supportive and hold their hand through this journey. If you place their physical care in the hands of the professionals, you will be able to focus 100% of your skills on loving them.
Don't beat yourself up. We've all been there, but only you can fix the problem as we all have learned. Just as the pilot of the 747 says, put the oxygen mask on yourself first, then help the others around you. You have to make your own health a priority, because if you go down, your loved one has no one.
Not sure how far along his condition is, but at some point perhaps hospice/palliative care are things to look into. As far as I understand, his disease is incurable and keeping him comfortable may be the most humane path.