Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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Sometimes I think about the immense energy and effort I have put into their care since I was 29, and now I'm beginning to wonder what they did to have their kids turn out this poorly. I also have a little bitterness (seriously just a tad) towards the expectations older men have of being cared for. So few of them have ever been tasked to take care of someone intimately, and quite a large percentage leave their terminally sick wives. Why do they deserve this much when they return so little to this type of work?
My grandfather is my favorite relative and I will be here for it all---I'm POA and Executrix (which puts me in a mild paranoia at all times that his children will come after me or my kneecaps lol). Right now I am debating how much money we blow through for home care. When the savings run out, I feel like borrowing against the house for 30 percent of its value is a good move---it leaves plenty for Medicaid to want to grab up if it comes to a serious drain of all assets.
My life before this was free-spirited, and I made it that way because my childhood was awful. I cherish the smallest things right now when I'm able to be in my home. I feel guilty for spending so much on home health aides (he just came out of rehab for a bad spine infection), but then again, maybe he should have planned better. It is not my fault his children are awful---I deserve at least half of my week. I will be contributing from savings when I really need a vacation and he goes into a quick respite. Also the confusion on just how to proceed (is going on and off hospice a good option for lower-cost respite relief? If I take the equity, that adds another 50K to his current 2400 SS and pension, plus the savings. We're technically blue-collar and poor by contemporary standards, but his cost of living otherwise is REALLY low for a big city.
I just hate being the only one.
I pray that he recovers and he comes back.
My grandmother lived in a perpetual decline for over a decade, unfortunately her familial memories were gone within months. She became a body with nobody home.
I am not trying to be a downer, I think we should know what could happen and believe otherwise. I'll believe with you that he will recover.
May The Lord move on the scene and touch your dads body and mind.
I hate that this happened to him. I hate that this is our life now. I hate that everything we had is gone.
What's worse is I used to have a speech impediment and had to go to speech therapy for YEARS growing up. In adulthood, I speak clearly and with well trained diction. But, every time she mishears, she blames me and it is a constant flash back to my childhood of people not being able to understand me.
"Next time sister visits she's going to fly."
"Oh, you wish I would die?? Is that what you said??"
"No, no, Mom ... um ... sister is visiting soon, so that will be nice!"
"Lice? Did you just tell me I have lice??"
Good grief.
Most friends can't care
It happened almost overnight
I can't keep a normal job
I never got along with dad
He's just as arrogant and dismissive as before
I am depressed and overwhelmed
If I leave this falls on my mother I can't ever do that
I can't do this.
Is this now my life.
Pretty sure my aunt is a narcissist and has probably spent most of my life poisoning family against me but you'd think they would be smart enough to figure that out by now.
Like many people on this board I am a caretaker to an older relative with dementia (in my case it is my aunt who has no spouse/kids.) I don't live with her, I'm her POA and she makes this almost a full time job - she has a constant need for attention, a magnetic ability to draw all kinds of drama to herself, she absorbs my time and anyone else she can draw in. I have made considerable sacrifices (financially, personal time and aspirations) to take care of someone who is by nature manipulative, demanding, and pretty mean but sprinkled occasionally with some nice moments.
Upside is I'll never receive validation and that was a clarifying moment for me.
In families the person who served as the family scapegoat that everyone spoke ill of and blamed everything that ever went wrong in the world on, is almost always the one who ends up being a family caregiver.
No, you will never receive validation from your aunt or any other family member. You will always be devalued by them and your help will always be white-washed over and taken for granted. You're not alone. This is exactly how it is for so many of us.
I hope at least you are getting decent financial compensation for doing so much for your aunt. If you're not, then drop her like a bad habit.
Tell her straight to either remove you as her POA or you will go down to the probate court and have them legally release you from responsibility. Then walk away. If your family has a problem with this decision, they can step up and take care of the aunt.
Find a different caregiver. If you hire privately and pay decent wages, you'll get a quality caregiver with excellent references.
If your help is through an agency, chances are you'll always have to keep a close eye on them. Agency help gets very low pay (usually minimum or a few cents above) and they will hire pretty much anyone. Don't be fooled by marketing and care agencies claiming their homecare aides are all highly-trained, supervised, and have all kinds of client support from the agency if they need it. They get nothing. Always keep this in mind when hiring agency-employed homecare aides.
- I've decided that I'm just not cut out for this. Or maybe after 7 years, I'm burned out. I lost my cool with my Dad again today and screamed. Once again, I go to bed hating myself for losing my cool. I USED TO BE SO LAID BACK AND EASY GOING. I hardly remember that person.
You have been caring for 7 years and as many as 3 people. You are a super hero, please forgive yourself, it isn't the worst thing that could happen and definitely doesn't justify hating yourself.
Luckily I did meet a wonderful woman, (significant other? girlfriend? We're both too old to be boys and girls..) who saw through the game and made sure dad made a will leaving everything to me. I probably would have just kept letting him own me. Now that I'm aware of how cruel and selfish people can be when they get very old if I had to do it again they would sign documents before I bothered to lift a finger stating I would be reimbursed for my time and trouble. If there is property worth anything make sure YOU are in the will and get it in writing with a copy of the will. Look after your own financial health before taking on someone else's problems because I was left high and dry once before. It'll never happen again. I was the sole caregiver for an elderly woman I wasn't even related to for over 10 years. When she died i was left homeless and penniless. My dad was probably going to do the same to me a second time before my "significant other" saw through the games and made sure I would be taken care of. The house is finally up for sale. I worked non-stop for several months to get it in salable condition again and spent a lot of money to do all the repairs, but it's finally going to pay off.
Don't let people walk all over you just because they made it to X years old. That is no free pass to become an abusive user. My time is too valuable and my skills are in high demand. I'll be damned if anyone will ever use me like that again. It may seem cruel, but unless they're willing to pay you for your time and everything else don't bother. Nobody else is standing in line to take your place.
If there's anything I learned the hard way about being a caregiver is to make damned sure that YOU will be reimbursed, no if, and or buts about it They'll use you then die leaving you with nothing.
You are right about many things here. You say you worked a job as a caregiver for ten years. Then your client died and you were penniless and homeless. With ten years as a live-in caregiver for the same client, you should have been able to put away a very nice nest egg that would have prevented you from becoming penniless and homeless for quite some time. When caregivers take live-in positions they get free room and board. Live-ins can put away good sums of money, especially ones who manage to stay on the same job with the same client for many years like you did. Live-ins know they have to put away money and have an exit plan in place for when their job with a client ends.
When your client died, you can't have expected that her family was going to continue to pay wages and keep you living in her house indefinitely. Live-ins also get written employment contracts with a timeline agreement. This means the family puts it in writing how long (if at all) a live-in caregiver can remain in the home after the client passes away or goes into a care facility.
You're spot on about not doing any caregiving for free. Sometimes it's not even worth it when you're getting paid.
,
,
hug!!
what i see, is lots of verrry kind, sweet people on this website —
and they’re getting destroyed by the situation.
it almost seems like the kinder you are in this world, the more you’ll be stepped on.
hug!!
courage.
step by step, we must find good solutions/decrease the problems/avoid uncaring/mean/toxic people.
let good win.
i agree.
my sister is caregiver. She got to keep her place, got a hired cleaner, cool, gets paid, hired gardener and lawn mower, has days off and is allowed to leave a few hours a day. My family still tries to guilt me for leaving every time my sister runs off a caregiver. I kept my foot down. My sister who wasn’t helping me is now helping my older sister and guilts me for not helping and has a issue that she isn’t having enough help and calls me selfish for not helping. I made it clear it was her that forced the caregiver out so that she can do it so I don’t feel sorry for her because they tried to get someone else to do it but she is refusing and I should not have to suffer if my sister wants to run off caregiver for her selfish gain. My grandmother who slave driven says my sister doesn’t get paid enough to do all that I had to do and that she gets paid enough to just sit and watch movies for her. My sister has caused so much drama by trying to trick grandma into changing the will, taking her car wrecking it and steal money and yelling at grandma but no one calls her out for creating drama or making it uncomfortable. My sister still stop by and visits even though she is always yelling at her and grandmother but that doesn’t make her uncomfortable enough to not visit as it is for me standing up for myself. My mom even tricked me twice when I went to visit and called me out in front of grandma and everyone to stay with grandma even though she knew that I am traumatized
I was accused of stealing from her bc I reimbursed myself for bills I PAID, or for the gas I'm using (daily) to care for her. I pay for her food and some other random things as needed. But supposedly, I'm stealing. Im also her Medical and Durable POA. Even though IM A NURSE- she'd rather take the advise of my uneducated "Covid-isnt-real"
brothers and their equally ignorant baby mamas. One brother didn't even tell her about much less invite her to their wedding and then had the audacity to blame me for them not telling or extending an invitation.
Yet, she consistently throws me under the bus with them and then when I'm done being abused by them and her, cries and begs me not to leave bc "who's going to take care of me?!?" And How could I possibly love her if I do this to her" nevermind all the abuse and the perpetual, thankless and neverending work that I put my entire life and career on hold for. My boyfriend who pays for a LOT for her, and who does MORE THAN HER OWN SONS, is put on the back burner so I can attend to the 250#toddlers every whim, emotional tantrum and need. Cooking, cleaning, her incontinence care, finances, all medical needs and appointments, taxi, insurance, estate planning and anything and everything. Repeatedly repeating the same explaination over and over just so she dismisses it as soon as it inconveniences her in any way.
I pick her very substantial self off the floor when she refused to wear her o2 bc she doesn't like it, I dont get sick days and am still expected to prioritize her needs and think for her , fetch, explain the same thing over and over while she refuses to do a damn thing including shower, for herself or me, and finally Im selfish if I have any feelings or limits to my caregiving, lack "understanding and /or willingness to display whatever she believes I should be provided at that time. But I receive no thought, PAY, much less compassion or understanding whatsoever. Not from her, and even less from my judgmental selfish, entitled and just plain ignorant brothers and their equally ugly on the inside significant others. All of them whom believe they have "rights" and no one is going to tell them a thing.
So I quit.
And I feel so much guilt for making myself a priority. Which pisses me off bc I sincerely doubt a single one of them gives a single s*** about anything but their own needs or feelings. I would bet what little money I have left, that they sincerely have not EVER considered my situation, much less if they could do ANYTHING to help alleviate the burdens and emotional weight I was expected to bear. Unassisted, unpaid and unappreciated.
So sister, I feel you. All the way deep down feel you.