I have been helping care for my mom who has been on home hospice for the last couple of months. She has been declining in health for the last 7 or so years due to Parkinson's disease, and was diagnosed with cancer prior to being put on home hospice. At this point, she is bedridden and pretty much needs everything done for her, from feeding to changing depends. Her spirits are very low, she is often upset and cries a lot.
For the last few years, I have been struggling with anxiety and severe depression (which I am currently in treatment for). I often feel empty and emotionless/numb. I haven't felt very upset about the state my mom is currently in, and it makes me feel like a horrible person. I continue to just feel numb as I care for her. I'm not sure if it is because I have become so accustomed to my mom being sick for so many years. Or if it is just part of the depression. Or autopilot mode. Or if I've become this horrible, careless person. My mom can also be difficult to deal with at times, and I often find myself feeling frustrated with her...which makes me feel very guilty.
My dad and I take shifts caring for her. She usually needs caring for through the night as well (we tried 3 different night-time care aids to help us but my mom refused all of them). I care for her Friday nights til Sunday evenings, and Tuesday nights til Wednesday evening. I feel like I should be there more, but between lack of sleep and her frequent needs, I feel like I can't handle more than that.
Has anyone else experienced this "lack of feeling" toward their loved one, as well as frustration?
a condition characterized by emotional and physical exhaustion leading to a diminished ability to empathize or feel compassion for others, often described as the negative cost of caring. It is sometimes referred to as secondary traumatic stress.
Google it, and take the test online to see if you suffer from it vs. burnout; there is a big difference. Here is an article on the subject:
https://www.goodtherapy.org/blog/psychpedia/compassion-fatigue
Here's a link to the Compassion Fatigue test for helpers:
https://www.michvma.org/resources/Documents/Prof.%20Competencies/2017%20Proceedings/figley%20self%20assessment%202.pdf
Please don't ever think of yourself as a horrible, careless person! We are all human and as such, have our breaking points, especially after care giving for years on end. Don't think of yourself as some being that should be able to handle all that's thrown at you without breaking down........that's not realistic or healthy. Nor is it realistic or healthy for you to be in such a position to be a personal caregiver to a mother who's been so sick for so long. A nursing home is staffed with teams of caregivers who work around the clock precisely so that one or two people don't have to suffer the tremendous burden that you and your father have been suffering. You're only two people doing the job of a large TEAM of people; so it's no wonder you're feeling this way.
Wishing you the best of luck in finding peace and joy for yourself amidst the duties you've taken on.
Before my last position ended, I literally had zero emotion of empathy for my client. I never slacked off on the physical work for a second. She was immaculate because I gave her a head-to-toe bed bath daily. Her hair was washed twice a week. I brushed her teeth, did her meds perfectly, and made sure she was fed very good food.
I totally neglected her emotionally. I just didn't care. I switched on the auto-pilot every day and got all the physical work done. I did it in silence though.
The same thing is happening now with my mother. In addition to a lifetime of gaslighting and verbal abuse, I've listened to her complain incessantly about all her health problems since I was a little kid. Until finally I got to the point now where I just walk away and feel nothing.
This is caregiver burnout and you have it. You and your father have to bring in outside help to give you a break. If your mother refuses it, don't give her any choice. It's either accept outside caregivers or it's not possible for her to remain at home.
It’s horrible to be doing our very best, only to feel invisible or worse, to be criticized by others, because we aren’t all smiles. How in the world can frustrated, exhausted and isolated caregivers be chipper and cheer up those that we are caring for?
I am truly not trying to place blame on others that are innocent observers, or should I say, ignorant observers. They simply don’t know how tough it is to be a primary caregiver, but I absolutely feel that our opinion of caregivers must change. Caregivers deserve appreciation and respect for their hard work. Not that this takes away their burden, but it’s some comfort knowing that their efforts are recognized.
So, I would like to say as a former caregiver to all of the current caregivers, you have my support. I would also like to say to all who are being cared for by others, to please treat your caregivers well. It’s a two way street. No one likes to be taken for granted. Caregivers are amazing people. Everyone needs time to rest.
I do have empathy for those who need care. I would not have been a caregiver for so long if I hadn’t. People need to work together for the best outcome for everyone.
If numbness prevents pain and sadness from robbing you of the energy you need to be loving and caring to your mom, that’s a good thing.
Cheryl, even a Lamborghini needs to fill up (not that I’ve had a Lamborghini but go with me on the car metaphor). Please find moments to take care of yourself - Life is easier when you’re not exhausted, you can’t help your mom when you’re running on empty and fatigue begets fatigue.
Sending a 🤗
I'm so sorry you're going through this. Caregiving can be such a struggle, day after day after day. The involuntary numbing you feel is likely self-protection. The feelings will probably come back when your mind knows you can "take it." Many of us here have experienced the same thing or something very similar. No more guilt, Cheryl. You didn't cause this!
If you read some other threads you'll find that some of us have reached the "won't they just die already" stage. I know I have. We joke about it at my house but it's really how I feel. You need to back-off some of the care taking duties and just hire the night-time care aids even if your mom objects. Sometimes it can't be her decision.
I am now in counseling and was just expressing my fear that when mom is gone I will feel guilty that I didn't do a good enough job. My counselor asked me what I could do to prevent the guilt. I have a hard time enjoying my mom's company. She is very social and would love to talk and have lengthy conversations, Because of some of the things she has said and the way she behaves, I find this very difficult to do. If I express my feelings to her she tells me I'm too sensitive.
So I find myself on auto-pilot being as caring and polite as I can be. I wish I could have a more lighthearted relationship with her, but I find myself stuffing my feelings down and going on with my day.
Know that you are perfectly normal, a very caring person, and not alone. Caregiving is one of the hardest things to do.
Find time to do what you love...reading, gardening, exercising, sewing, crafts...whatever it is that makes you feel content.
God Bless you,
I think if you go through enough hurt and heartache your mind and body have this resource that can stabilize you and keep you safe. It's like that flight or fight instinct. Somewhere in between maybe.
I felt like I was on auto pilot a lot when my mom was ill and dying. It wasn't that I didn't care. I just needed to be numb. Maybe that is what you are experiencing?
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