Caregiver frustration

[y193536m]

II am writing to express a deep concern that has weighed heavily on me as a full-time caregiver. It seems that somewhere along the way, caregivers have begun to be treated as if we are “NHI”—no humans involved. This dehumanization is not only disheartening, it is dangerous.

Several years ago, I made one of the most difficult decisions of my life: to step away from my career, my social life, and nearly every aspect of personal independence in order to care for my aging and increasingly fragile mother. This role has demanded everything—emotionally, physically, and mentally. I no longer have the freedom to run simple errands like going to the grocery store. Everything must be delivered. Family members have distanced themselves, offering only a passing “you’ve got this” as they walk away. Meanwhile, I am left to carry the full weight of this responsibility, often on less than four hours of sleep a night, in a home that is literally falling apart around us.

Last night, I was forced to call emergency services after discovering signs of a potential furnace malfunction that raised concerns about electrical issues and possible carbon monoxide exposure. While my mother’s condition was taken seriously, my own health concerns were dismissed. No vitals were taken. I was spoken to with condescension—one responder said, “I’m not trying to say you’re crazy,” while another brushed off my symptoms with, “I feel that way all day.” I was left feeling invisible, foolish, and deeply disrespected.

Caregiving is not just a role—it is a relentless, all-consuming commitment. It brings with it a complex mix of emotions: frustration, sadness, anxiety, depression, and isolation. The responsibilities are immense, and the lack of support can be devastating.

I share this not to seek pity, but to advocate for awareness. Caregivers are human beings. We deserve to be seen, heard, and treated with dignity. Our health matters too.

[SereneSeagull]

I’m sorry about that very real frustration!  I’ve recently helped family members myself in relieving them of their constant caring for another member, so they could step out and take a breather, attend to their own affairs, etc.  Asking for help was hard for them, as they felt they may be imposing.  

As an older teenager years ago, I did adult companion sitting. It was a way that a spouse could get out of the house and socialize or get their hair done or whatever they wanted to do for that day, as I sat with their loved one, made them lunch, watched tv, had wonderful conversations, or was just there while they napped/slept. I’d ride my bike over.

The importance for you, as the caregiver,  is to also attend to your own self, which is so needed, and often times is neglected.  There are support people around, many times from churches or civic or community groups, as I did from those, when I was an older teen.  

The National Council on Aging organization is one that could give you suggestions or maybe area churches or civic groups in your area.  You sound like you need help, and I know watching my family member try to do everything, they needed sleep and sanity.  

Everything you do is important, and unselfish.  You do need to take care of you as well.  I hope that can be a call away for you.  

[GailL1]

@y193536m 

So sorry that you are feeling down because you do have an important job - you have chosen this job so it is up to you to do it for the benefit of the patient but that also includes taking care of YOU.  You lose your benefit to the patient if you begin to get negative effects from the job - depression, anger, loneliness, self-pity, resentments, bitterness, poor health - all these things can grow and fester unless something is done to correct them.  

I have asked AARP to move your post to the correct board heading of “Caregving” from “Game Talk” where you posted it because your post is important for many and it needs to be seen and read by those with such understanding.

Caregiving Burn Out is a real thing and has to be dealt with to help you restore your complete functionality.  Just as you made the decision to take on this responsibility, you also have to exert effort to keep you well - mind, body and spirit - You do this by  building a network of people that can help you - mind, body and spirit - this may or may not be family- it may not even be somebody physically there. 

Building that network takes time and planning too but it is also a part of this responsibility:

• Perhaps start out by asking one of the closer by family members if they can at least give you a few hours periodically to take care of you.  
• locate a respite facility to give you some time for yourself and take care of other things 
• ask any of your friends if they may spare a few hours a week to give you a break for rejuvenation.

Many time people don’t realize or acknowledge that you may need help - so you have to ask them specifically.  However, if they don’t respond to your asking, move on to somebody else; accepting that they are different or have other lives and cannot do this.   Or they may only be able to do a small amount but that would be something.  Or you may not find any of the close others that see caregiving just as you do -

If you are on Medicare or the caregiver of a Veteran, these programs do offer some help also - As one of the members here often post, Medicare offers some monthly counseling services for those who are needing it to help their mental outlook.  Your doc can advise you if you tell them what is going on. 

Reach out to the local government or to churches in the area to see if they may offer help to you of whatever type - sometimes it may not be the caregiving but other things around the house that need to be fixed that adds to the feeling of being overwhelmed.

Does your patient meet the qualifications of Hospice?  Hospice Services is also a program under Medicare.  Reach out to your patient’s doctor or your own doctor to see if there is anything they could recommend or if the patient qualifies for Hospice care.

Join and participate in actual a physical or online support groups where people who are in the same situation as you come together to support each other - In fact, I believe that on this board, under the Caregiving heading, there maybe some post and resources mentioned to help you.

Remember that not everybody is cut out to be a caregiver - some may just do it from afar, placing the actual physical care on somebody else, although they are providing a necessary service of organizing the care and finding what is needed.  Caregiving comes in many forms and services.

The care that you need for yourself - mind, body and spirit - has to be met but maybe not in exactly the way you imagine that help might come.  You aren’t gonna change others - you can only find the right others to help you.  Help is available to you but many times that has to be found by searching - rarely does it just drop out of nowhere.   So start the search to make yourself feel better and so that you can continue to care for whomever is your patient - if that is still what you want to do - or make other arrangements for the caregiving.  

I hope you can find the care that you need - 

[GailL1]

@Fall2025VA

Will you exert whatever works on the AARP powers-that-be to get this whole thread moved to the topic of “CAREGIVING” and off of this topic of “Game Talk” where it does not belong - I have asked them twice but no action.  It seems important for the CAREGIVING BOARD and those helpful folks who read and post there. 

Thank you.