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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I've heard of it and have it. I just find it so sad when I read from everyone's experiences out here that so many of us feel trapped in our lives. Like there's no way out that doesn't involve either our own health failing or that of the people we care for.

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 :)
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Are you the only one providing care for your brother? If so, you need to get some help ASAP. I don't know your exact work load but it sounds like it is too much and it's only going to get worse. Getting at least a few hours a day to yourself could be very helpful. Have you been thinking about the long term plan? As he continues to decline, you may need to have him in a facility. I hate nursing homes and can understand your idea that we shouldn't put our family there. BUT the sad reality is that we often just simply can NOT take care of a person's extreme needs at home. It is just too much. Is that what family does to family? Speaking of which, is there any other family around that can help? Often the answer is no, and that has to be ok, but any help would be nice.

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.
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I don’t have any advise but I feel burnt out also. I feel selfish for feeling this way. I am sorry that you are going through this.
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Keep this in mind: Just because you are a family member doesn't mean you're a qualified caretaker/nurse/dietician/physical therapist/shower aide.

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.
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Compassion fatigue can also be related to oxytocin produced during specific periods of life, including caregiving.    I found some interesting literature on it back in 2003 after my sister died, but can't find much on it now.   

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:
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Sendhelp Jun 2021
In addition to all the emotional and mental aspects of caregiver burnout, there is Tylenol. I found this:
"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."
I just read where MND is used primarily in the UK and Australia. Its called ALS here.

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.
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Yes. A Counsellor used that term to describe my situation in the past. It described exactly how I felt. As if my stores of compassion had fatigued, was being exhausted, was in danger of running out, once there, I would be left hollowed out, empty, unable to care, suffer depression. I choose to change my situation, which brought restoration. In time, slowly, I have found a middle ground - between the extremes of over-caring/over-involement at one end & fatigue/burnout at the other.

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*.
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Whether you call it compassion fatigue or burnout there are very few who don't understand what you are talking about. Many of us get into caregiving without any clear understanding of what is involved and how difficult it can be, my advice is to look ahead and make a plan that includes an exit strategy for you, even if you are not ready to walk away yet it can help to know there is a safety net available.
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