Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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There's no reason why you shouldn't have been able to go to the calling hours or anywhere else alone.
'No, I'm going on my own'. Then let that be the end of it. The guilt-tripping is something you're going to have to learn to defend yourself against. The way to do this is to allow yourself to understand this plain truth. If you have no life that isn't centered around his needs and demands, you won't be able to care for him.
No one wants to develop resentment towards a LO they care for because it often turns to actual hate.
If your husband can be left alone, start going out on your own. Even if it's only to the store or out for coffee with friends. You do not have to tell him where you're going or who you're seeing.
You are an adult not a child and he is not your parent.
Hire a care companion a few hours a week to take him out without you. It will do both of you good. The two of you can go out together with the companion who will take care of hubby's needs and with the caregiving not on you for a little while, maybe the two of you will have a good time.
Please bring in some help. Being a care slave is a wretched existence. All caregivers must down time. More than the odd hour here and there.
“Stay away from negative people. They drain your energy like vampires suck out human blood.”
“You better go alone, than with negative people.”
“They like you more when you don’t challenge them. They prefer to have an upper hand over you.”
“Unhappy people can be very dangerous, don’t forget that.”
My father is old school Italian and thinks I’m useless because I don’t have a penis. My mother doesn’t like me because I don’t sugar coat how unsustainable their living situation is. I realize just my being here helping out is enabling them not to make any decisions . My mother and I just had a huge argument. To her I’m the evil daughter which is fine because I’m the one that lives 3000 miles away. Just don’t care anymore. Going back home next Thursday to celebrate Christmas and take a family vacation with my daughter and grandkids. My parents can go figure it out. I will be off the grid from 12/26-1/2.
It's exhausting. The finances. The caregivers. The home maintenance. The meds. The travel to get there. The medical required diet. The ordering of supplies. The demands on me....all the time.
We just recently started leaning toward starting help from hospice. The receptionist/billing lady actually almost cried too, saying she understood and she went through similar with her mom, sixteen years ago, and still is painful.
I guess we’re not as alone as it most often feels.
Do some, any, little thing to be gentle and kind to Yourself that you’d usually talk yourself out of. Best to you.
Now I am told that my caregiving, has put me in a position of "undue influence." That the law assumes it is so and the burden is on my to prove otherwise. I'm gobsmacked. Let's get real- the son chose to have next to nothing to do with his dad. We've seen him on social media (I'm sure he thinks we're too dumb to find his account) with his friends- hiking and vacations, weekend getaways, dining out- living his best life. My health is affected, my sleep is affected, my job is affected, my finances are affected- and all so I can be accused of "undue influence?" That is the worst thing about caregiving so far.
^^^THIS
Giving 24/7, and defending yourself to those who do.......nothing.
i think it's really true, that unless you have done it yourself (helping an elderly LO), you don't realize all the work, effort, time, stress, etc., etc., etc., etc., that goes into it. i think some people even have the bad luck of having family members who enjoy seeing you suffer, who enjoy burning your life down. sadistic.
you must keep your head up. rescue your life.
Very well put. If someone has never done it, they do NOT get it. Not even close.
All the CAT Scans my mom has had over the course of 3 months is just CRAZY!
BUT…
the undeniable reality, is that it has set my life back for years. I have a lot to catch up on (caregiving has affected my career, my…everything) (my mom is abusive).
I’ll get myself out of this set-back.
At a close family friend’s funeral recently, as we stepped into the vestibule the bereaved husband saw us and began to sob. My mom threw herself into his arms (his young sons were dressed in black suits standing around him) and my mom sobbed loudly, “oh, (his name), I have terrible news I just heard this morning that my BROTHER is dying, I don’t know WHAT I am going to do!” Everyone looked disoriented and fortunately my husband acted quickly and peeled her away from him saying “Not now, we are at (his wife’s) funeral.
We are all selfish from time to time but This level of self-absorption has got to be some type of mental illness.
And it's like you know that in most cases they sincerely don't understand but it makes you think of how kids break things you can get them to STOP THE BEHAVIOR, because they can learn that certain behaviors break things, but they can't learn that so you just have to watch it happen, and you don't have infinite money so then you just have to accept that you don't have hot water or whatever anymore. It can just make the whole quality of life worse and can be dangerous.
And the emotional outbursts are so frustrating because they can't be repaired without infinite money so you just kind of watch your home degrade while you hope and pray they don't hurt themselves while having the outburst.
Edit: This sounds really materialistic and I realized it as soon as I posted it, and I'm new so I hope it's ok just to vent. I really don't think that a water heater is worth more than family or anything, it just... I don't know, I just get really frustrated. I know that this is not as bad as stuff other people have written about relationships being damaged.
But I read a few other posts and saw that for a lot of people this had been a lifelong thing, the person they were caring for had always been abusive. That's not really true in my case. It's a noticable behavior change.
But my point is that for a lot of things such as guns and knives, you can get a safe and lock them up, but for others like the stove or the generator, you just kind of have to deal with it, and because they're regular household things you have to have it seems like people really downplay the physical danger and it just makes me sad. I read some posts about people that are being cared for trying to start physical fights and it's so sad and awkward because you don't want to get hit or burnt but you're not going to fight back against someone that frail so you have to just kind of let it happen and it feels like it builds up and builds up and just makes you more and more sad.
And then you remember that this behavior had a genetic component and you start getting worried that you're looking at your future and it scares you on top of the sadness.
There are dementias that make people mean and dangerous. Yes, your life is truly at risk because they also get superhuman powers with this aggression.
If it isn't working for everyone involved, it isn't working.
Your grandma has had her time, it isn't fair that you are not able to have your time.
It is okay to say you can't live like this anymore and her children need to step in and get her a level of care that keeps her caregivers safe or they're it, this is not your responsibility.
I am sorry that you are having to live with the fear of dying, please save yourself.
People who have only worked a job dawn to dusk 7 days a week, still can't understand what it's like. It's not all your waking hours, it's all your hours, period.
I hate watching this once fiercely independent, amazingly strong woman basically regress into a toddler.
I know I am not handling this well emotionally, but I do what *I* need to. My decision, never pushed on me, but I have told all of my kids they are NOT to do what I am doing. I don't ever want my kids to feel the way I do. All I ask of them is to visit occasionally when the time comes. I am awestruck at how people have done/are doing this for years. Like many of you, my siblings are useless. 2 out of 3 didn't even bother with a phone call on her birthday. 1 messages me approx. 1x a month- "how's things there?"
You are all amazing. Positive vibes and good thoughts for each and every one of you here, and all those unfortunate to have not found this forum 💕
The PTSD!
During the caregiving I don't think about what is happening at the time, but now that my Daddy, Mama and sister are gone I think about the "if I only knew" things!
That's the worst because you cannot change the past just make the next time better!
My moms is grateful and tells me she doesn't know what she would do without me. That makes me feel like a bigger a******e that I hate taking care of her.
You're only human just like the rest of us. No one is pefect and no matter how much we might love a person, no one enjoys cleaning can, the constant repeating. the smell, the negativity, the misery, the complaining, and a whole host of other things.
Go ahead, brother. Let it rip. You have every right to and please, don't ever let yourself feel like an a**hole for being human and having feelings.