It will be three years next month since I relocated from another state to care for my 78-year-old brother who had a mental breakdown, along with vascular dementia and now ALZ diagnosis. (My profile says I moved last year, but that was two years ago). I am the only living relative, and my brother has multiple health problems in addition to the dementia.
When I first relocated, I was extremely worried about my brother, and I was in "super-caregiver" mode. To say the last three years have been rough would be a huge understatement. I moved my brother from independent living to assisted living to now 24-hour care. I took him out of one nursing home where he was abused during the Covid lockdown and put him in another. I sweated through the Medicaid application process. I've had arguments with doctors and nurses...and on and on. But I rose heroically to every challenge and pretty much put my life on hold because I felt my brother's needs were more important than mine.
Slowly over time, my supercharged caregiving feelings have diminished, and now I'm pretty sure I have compassion fatigue. It's not that I don't care about my brother, and I still believe I did the right thing to relocate; but, my emotions have shut down, almost as a means of self-preservation. I just can't maintain the high level of emotional caring I started with. I feel now I'm just "going through the motions." I interact less and less with nursing home staff except for emergencies, I visit far less than I used to, and I worry less about my brother's declining quality of life. I've started worrying more about my own.
Of course, the rock and the hard place about compassion fatigue is the guilt that creeps in when I feel like "backing off." But I don't know what else to do. I won't make it through the next three years if I don't change something, but the emotional tug-of-war is so hard.
Has anyone else had to manage this emotional battle? What has worked for others?
First few years he was ambulatory and able to drive. a few years ago I took that away from him. The hospital stays the knee replacements, falls, the dr visits, and medicine management. Now it is more falls and more surgeries. Neuro, urology, all of the oligists.
Lately, he's been downing chocolate like a kid the day after Halloween. So he fell, he said he stood up and fell, BS was out of site, Not eating and just downing chocolate.
He buys bags when he is out with his friends like I won't see it. He gets out 4 times a week and eats chicken fried steak, burgers, fried clams, and anything not healthy. the man eats out more than I do, and as soon as his check arrives he's like daddy warbucks spending taking people to lunch and dinner so he can get out. So, after I got him up, fed him some chicken since he had not eaten all day. I made dinner, my wife was out so we had a come to Jesus meeting, probably the 100th one I have had with him. Next time you fall you may break a hip and then you will be someplace other than here and it will be 3 squares and a cot and not a nice place. Yeah, this will last a week again.
I am tired, my nice button is broken, he fell and I had him get himself up, showing him he can do it. I did help a little but he is closing in on 300 lbs and me being 62 I can't pick him up.
I've been doing EMS for a long time and my nice button is broken there too. After a long time, you get burnt out. When it's in your home it gets bad. When you have no family help it gets really bad.
Trying to schedule my vacation time with my wife and I can't get my sibling to take more than 2 weeks and tells me their house isn't safe. Really? I live in a 3-story house let's talk about stairs.
Tired, burnt out, and just plain grumpy. There is nothing that works for me other than getting away for some time but that is only once a year now.
------------------------------------------------------------------------------
Below from: https://www.ucsfhealth.org/education/self-care-for-caregivers
------------------------------------------------------------------------------
The physical and emotional demands of caring for a loved one with a serious illness can be exhausting and even lead to burnout. It's important to maintain your own health and well-being so you can provide the best possible care.
Here are tips for handling some of the common challenges for caregivers:
Take time for yourself and your own needs. Watch for signs of stress, such as impatience, loss of appetite or difficulty with sleep, concentration or memory. Pay attention to changes in your mood, a loss of interest in usual activities or an inability to accomplish usual tasks.
Eat a well-balanced diet. Drink plenty of water every day.
Exercise by taking short walks daily or at least three times a week.
Listen to guided relaxation recordings or relaxing music.
Schedule short rest periods between activities. Make it a priority to get a good night's sleep.
Set limits for what you can do.
Don't overload your daily to-do list. Be realistic.
Find a few hours several times a week for activities that you find meaningful and enjoyable.
Let family members and friends help with household chores, meal preparation, childcare and shopping.
Keep the lines of communication open among your loved one, you, your family and friends, and the health care team.
Share your feelings with family members or other caregivers, or join a support group.
Give yourself credit: The care you give does make a difference.
You are not alone. UCSF Health offers experienced and sensitive social workers and case managers to help patients and their families cope with illness, hospitalization and medical treatment.
Adapted from "Self-Care for the Caregiver," Oncology Nursing Society, 2001.
--------------------------------------------------------------------------------
You have set very unrealistic or idealistic unattainable goals for yourself with what you believe is a super-caregiver. Yet, a person being effective(not super) must process through the feelings that hold you back from being as effective as possible, i.e., guilt. A 'super-caregiver' needs to face these feelings 'head on' with lots of self-love and self-compassion ... and create a new model / belief system that will work to your benefit and the benefit of your loved one.
No one can run / work on empty.
How to get through exhaustion (which is what I call it) ?
Every day, you need to do something(s) for yourself to sustain yourself, your energy, your ability to be present emotionally and psychologically.
* Get enough sleep
* Eat well - get your nutrition. Don't under or over eat.
* Exercise
* Relax, meditate
* Find 5 minutes to several hours of 'me' time -take breaks often
* Find support either paid caregivers or volunteers so you can get respites / time away. You must renew yourself.
'Super' is often misunderstood. Super-caregivers take care of themselves so they will be available to another. And, reframe that word as it is sounds like a judgment, i.e., if you aren't a super-caregiver, then what are you? a mediocre one? While I wouldn't use this term personally, I would say that a 'super' person is one who takes care of themselves and knows how to set boundaries. You are as important as your brother.
Yes, having these responsibilities to another in need - and caring for yourself is certainly not easy and often most of us are not trained to do this. We are presented with circumstances requiring us to give more than we have to another (or some with kids may not agree here...) while taking care of our self.
Take a st
have you done it yourself = have you cared for someone, and simultaneously successfully cared for yourself?