This is just an observation on two idioms that have made me stop and think....
When Bertha asked me to become a caregiver, she phrased it in a peculiar way: "I'm looking for someone to do for me."
"Do what for you," I thought. Before I could ask the question out loud, she went on to explain what she meant.
Since then, I haven't heard anybody use that phrase except here on this caregiving forum, so I gather that it's almost obsolete, at least here in the United States. I'm sensing that the phrase, "do for me," stays alive only by word of mouth, just long enough to be passed on from one elderly person like Bertha to a younger person like myself.
I really dislike the phrase "to do for." Not only is it awkward to the ear, it sounds like a harbinger of doom because it's way too close to "done for," as in "you're ruined" or "you're toast" or "there's no hope left for you now."
The feeling of doom applies to both parties.
As aging and disease take their toll on an elderly person, they might be afraid that it's only a matter of time before they're dead or "done for." It must require a lot of humility to admit they need somebody to "do for" them.
As for the person who agrees to take on the caregiver role, you may find yourself saddled with physical, emotional, or financial burdens that you were unable to foresee, no matter how hard you tried. You may be energetic, healthy, and full of compassion, but that won't save you from harm. The very qualities that make you desirable and useful to your client or loved one are the very qualities that will destroy you if you aren't careful. Tread carefully because if you "do for" somebody without taking care of your own needs, burnout is inevitable and you will be "done for." The road to hell is paved with good intentions.
Somebody on this board keeps citing a statistic that says forty percent of caregivers die before the person being cared for. Now that I've done a little caregiving myself--and quit because it impacted my health in an unforeseen way-- I can understand how such an untimely death can occur.
You can do only so much before you're done for. And if you've really, really screwed up your health because of your overly demanding role as a caregiver, you too may have to recruit a younger, healthier person who is willing to do for you. Oh the irony!
This has the potential to become a never-ending cycle of caregiving and burnout until someone has the self-respect and wisdom to toe the line.
So true. I don’t think I had heard the phrase “do for” until seeing it on this forum. To me it suggests the idea of doggedly doing anything and everything in order to keep someone else’s life going for them, often at the expense of one’s own life. So I think it’s an unfortunately accurate turn of phrase!
My suggestion is to never allow yourself be sidetracked about the amount of care you are giving. Set the hours you will work and then once the time is up, go home. Don't work for free. Get some type of compensation.
This person tried to get me to work longer hours. I was like, this isn't happening especially when you are deadset on treating me like a slave. I couldn't see myself sacrificing ten hours to work with an ill tempered, mean and nasty individual. Bad feelings have a way of rubbing off on you.
doggedly doing anything and everything in order to keep someone else’s life going for them, often at the expense of one’s own life.
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Somehow I have gotten here - as many before me- thinking it was a short term situation. Now I need to walk it back and find a way to get some time to go home.
One of the support center staff members at my son's cancer center told me that originally they only gave mental health assessments to the cancer patients who used the support center. She said they quickly realized they needed to do mental health assessments on the caregivers as well. To their great surprise, they learned the caregivers are under much more stress than the cancer patients.
We end up putting our lives on hold - our caregiving can be at the "expense of our own life" - no wonder we are under great stress.
I realized while talking to the support person that not only has my life been given up to keep my son's life going, but, also, here I am living out of a suitcase wearing (what feels like) someone else's clothing. The seasons have changed since I arrived. I had to purchase some inexpensive warmer clothing.
My son started having panic attacks late last spring. One of his chemo meds was causing extreme blood pressure episodes that made him feel like he was dying. To stop his constant treks to the ER, I ended up moving in with him full time this summer. We felt so badly for him and he no longer wanted to live alone which had been his strong desire for years.
Did that help his panic attacks? Well, it kept him out of the ER, but the panic attacks have continued and now after reading up on the subject, I suspect he has developed a panic disorder.
Even though that particular chemo med has been stopped for months, he continues to have daily mini panic attacks. "Mini" only because the high blood pressure episode issue has been resolved.
Finally, a research trial drug has reduced his tumor size for the first time. The past two years of chemo only kept the tumors stable. No longer is death pending within months - he has been given a reprieve.
Now how to walk it back and get me home? I'm not asking for much, just maybe 3 nights every two weeks. I need to spend some time in MY home, wearing my own clothing. Our situation is complicated, sigh.
Gosh, I "do" remember the phase "doing for" that was what the older relatives called it when someone had live-in or daily help.
Also, I regularly use the phrases, 'to do for' 'can't do for themselves' and 'can do for themselves'. Everyone who's ever done caregiving work (paid or unpaid) for an elderly or handicapped person knows exactly what you're talking about when these phrases are used.
Everything you say here has been said a hundred times and in a hundred different ways by pretty much everyone who belongs to this forum.
I was an in-home caregiver for 25 years as my employment and now have my own homecare operation. I've also been dealing with my mother's abusive neediness since I was basically a little kid. So I think I know a little about this kind of work and the types of abuse that can come with it.
I've seen many people get into a caregiving situation for an elderly person or 'loved one' that they then become mired in it like quicksand and can't get themselves out. It's not because they lack respect for themselves. Many times they've moved the 'loved one' into their home or they've relocated themselves to their house. Now I'm sure you can deduce what happens next. No one can just tell the demanding elder to get out. If you're living in their house you may not have another place to go to. You can also get criminal charges in some states if you're the caregiver and do walk away from the elder who can't do for themselves anymore, as you say.
I've seen people who were broken by abuse in their childhoods and never recover. Then they find themselves forced to care for their abusers when they become elderly and needy. It's heinous.
There are many weak people in the world who can't stand up for themselves. They get bullied and used by others in life. That's why it's up to the rest of us to help pull these kinds of people out of abusive domestic situations such as caregiving. They need help and it's not because they don't have respect for themselves or wisdom.
How I see it is a person who refuses help and chooses be a martyr to caregiving and professional victim is a person with no self-respect. Not someone who finds themselves in an abusive caregiving environment that has no one to help pull them out.
It's good that you have a resource through the cancer center that can be a helping hand to caregivers.
Your situation is entirely different. When it's your kid that changes everything. I can't even imagine what a day in your life must be like.
Caringiving or I should say being a nanny-slave abusive elderly person with dementia or who resents being old and takes it out on their caregiver is entirely different. I'd rather be a caregiver to a dozen of the worst and most miserable old people in the world 24/7 for the rest of my life then see my only child, my son be sick and suffering like yours. God bless you and your son.
I consulted my NAMI Family to Family teacher/friend for help, wasn't great to hear her response - that "ours is the most complicated situation in all of her experience".
Being here for him does make it possible for his life to have some sort of normalization. Yes, it is my son and that does make it heartbreaking to watch his painful cancer journey complicated by panic attacks.
Most days I am fine, occasionally a desire to have my life back does make me quite frustrated and terribly homesick. I asked the support expert if my son was able to do more or is the chemo fatigue this disabling. He only moves around to change locations from bed to couch or to use the bathroom. She said "yes and yes" "yes, possibly he could do more on some days and yes, the chemo is that fatiguing". Cancer is terrible, he will have a good day followed by a bad day. If you ask which symptoms are cancer and which symptoms are chemo they say "yes" again.
Earlier this year I was able to convince my sisters to stop giving up their lives to care for my elderly mother who has always been the center of her own world They were ruining their health and both ended up with shoulder injuries that require surgery. Her new family caregiver is a grandson in his 20's. Sigh. My mother resents having to pay him $100. a day for 24 hour caregiving and complains about him every day. Luckily his mother stood up for him and he is getting weekends off. When he asked for the month of December off, Mom has refused to consider temporarily moving in with one of my siblings to make that possible. I do envy him getting the weekends off. At least I get my walks and car errands, he never gets to leave.
As the originator of this thread said
if you've really, really screwed up your health because of your overly demanding role as a caregiver, you too may have to recruit a younger, healthier person who is willing to do for you. Oh the irony!
This is exactly what happened in our family.
Happy Thanksgiving BurntCaregiver!
I am so sorry that caring for this woman caused health problems for you.
I think I dodged a bullet when I agreed to care for my infant grandson and then my Mother for a short period of time. I have told the story of my GFs Mom asking me to occasionally take her to appts that ballooned into taking my GF and then her daughter. I was going to need to do something, it was too much. My grandson was the answer. DH just went with the flow "We're retired, we have time, no problem" But it was a problem when someone relies on just one person. After my caring was done, I would see Mrs S and she would say "come see me". Yes, I felt guilty, she really is a sweet lady I have known since I was a child. But I saw the writing on the wall. Her daughter, an only child, passed as did the daughters husband. Mr S had passed years before. Her grands were no help. I just knew if I went to visit I would be asked to do things for her. Having no family, her being an only child and having an only child, I would be considered a daughter she now doesn't have. I would get into a situation I could not get out of. I am bad at confrontation. Learning how to say no but not easy. So, I chose not to even get involved.
We have to learn when enough is enough. When things have gone beyond our capabilities. When the one we are caring for needs more than we have to give. We need to set boundries from the beginning. I believe we are hear to help each other but not to be taken advantage of because we r willing to help.