I posted this in the "whine" thread earlier....but I think it might be deserving of it's own thread, for those who want to complain or contemplate the issue, and also to share tips on how they got their parents to accept outside help. This seems to come up a LOT, all over the forum. This is what I wrote (slightly edited):
Why is it that so many aging parents don't see how exhausted and stressed out their caregiver children are? Why can't they see how much work this is? Or do they just not care?
I mean, just reading around in different threads - it's not just dysfunctional families, it's ALL kinds of families.
Like, why DO parents insist that their kids should and must be able to do the work of several paid workers? EVEN WHEN THEY HAVE THE MONEY TO PAY?
Why do they get so upset and resistant about allowing paid - or even volunteer - help come in to actually HELP their children?
Why do they insist that their kids be totally available to them, sometimes 24 hours a day, without allowing anyone from outside the family to spell them off?
What was all that "I don't want to be a burden" b.s. for, anyway?
My mom was like this even before her mind started going downhill. So it's not just dementia. It started with me driving 350 km every 2-3 weeks because she refused to hire someone to rake the lawn. (But she'd pay my gas and feed me that weekend....which all cost a lot more than hiring someone!)
I am really grateful for home support. I could NOT do this without them. But it was worse than pulling teeth to get my mom to accept even a minimal amount in the beginning. She still gripes about them coming in, even though they are 10x more patient with her than I am.
If it's payback for raising us, well.....it's not like our parents never got babysitters, or put us in daycare, or sent us to summer camp/granny's house so THEY could hold down a job and/or get a break.
I've seen the healthcare system. It's horrific! That's why I would want my husband or adult children to take care of me. However, this doesn't mean they can't hire someone to help out. I think it's a matter of trust. I don't trust strangers will make the correct decisions when it comes to taking care of me. I don't think they will be doing what they are supposed to be doing when no one is watching. I don't think I'll feel comfortable around them. And if I'm senile, I'll probably have trouble adjusting to change and might get confused and disoriented with all the different healthcare workers. I'll want familiarity, to be home with those I feel closest to.
I recommend doing things slowly. You can start with hiring someone to rake the lawn. Be there when the person comes. Then hire other people. Your mom might not pay at first, but once she gets used to it, she might start chipping in.
If you want to know the answer to why your mom wants you to do everything, then you will have to ask her. If you feel she isn't telling you the truth, then give her options. Is it because of A? Is it because of B? Knowing what her issues are will help you to address them.
....are parents who are scared their adult children might not love looking after them, either now or someday down the road?"
Dorianne - I have always thought this. The first person I ever argued with about caregiving was my best friend at the time I started taking care of my mother. She turned on a dime from being my strongest support and ally to being contemptuous, disapproving, and almost bullying when I expressed my aggravation about how demanding my mother was becoming. She said curtly "They take care of you when you're little - you take care of them when they're old" followed by a snarky "I don't know why people think they should be carefree their entire lives."
Needless to say, she is no longer my friend. No, she never cared for her own parents (they both died young) but more than that, I'm sure her reaction came from angst at the thought that her only child, to whom she devoted her entire life (and never let him forget it), would most likely refuse or strongly resist helping when she started needing care. I understood where she was coming from honestly, but all the same, I won't have anyone in my life who is so unsupportive of me. I'd certainly never accept them as a friend. It's just too bad.
This morning I'm dizzy and brainless from the FIVE times she got out of bed during the night. Since she's an extreme fall risk and has great difficulty walking and can't remember how to use the toilet, I throw back the covers and head toward her. Then before heading to bed she demands to go into the kitchen. "No! You're going to bed," I rule. She doesn't fight that much, but goes to bed. Been a long, hard night and it's going to be a long, hard day though Sisters are coming over and they can care for her while I take a nap.
Of course, none of us could see the future, expect perhaps Mom because she could see some of her friends having to accommodate themselves to disabilities and infirmities. But she staunchly avoided considering any of the solutions they used, such as assisted living. She held on to her "if it gets too bad, I'm checking out." position.
Of course, nobody is going to swallow pills the first time they need assistance after surgery, or can't use a stepladder because their balance is too poor. So little tasks start being farmed out, mostly to me when I would visit her from several states away. It got to where she'd have a whole "daughter-do" list that I was expected to complete before leaving. Stupid me, I eventually moved down to Florida to help her out, and dragged my two older sisters into it as well. (They were already living in Florida). Mom of course is delighted. Now that she has an army of helpers, the pill bottle can be thrown away. A whole new plan for her old age has manifested, with no effort or sacrifice on her part at all.
What I take from this is that people avoid planning for old age not only (or mainly) because it's scary and unpleasant, but because planning would require hard choice, and sacrifices. Saving money. Working longer. Downsizing. Being willing to move to assisted living. My mother has successfully avoided all of that. I can't say it was her plan to dump the whole problem in the laps of her adult children, but she sure doesn't seem to be the least upset about it, either.
I really feel like illness and end of life need to become less taboo. Society as a whole need to get to a place where families can openly discuss these needs and plan for our futures, even the scary outcomes we'd rather ignore.
Mom's been reasonably cooperative since I put my foot down and said we're doing this my way now. But sometimes, she still tries every little thing to control the situation. Like, I can't go to bed until I get her to bed. She won't be able to get to bed on her own. Or she just won't go - she'll stay on the couch and fall on the floor in the night. So she deliberately slows down and delays everything, and finds a dozen things she needs to do first, making excuses like a little kid. Always making me wait, leaving me standing there, waiting to help her (get up, get on the toilet, get into bed, etc.). I can say, "I'm really tired, let's go to bed now," and she'll snap, "Just a minute!" Always got to get the last little bit of control in.
Last words said tonight. Me: "Good night, mom." Mom: "I'm getting right back up." Me: "WHY?" Mom: "I'm not tucked in right." This wasn't even a cute thing where she wanted a kiss or a hug; it was a positioning thing. She looked at me expectantly, waiting to be re-positioned. Finally, I said, "I'm not breaking my back to pick you up. If you can't move yourself, we'll have to get a lift." "NO LIFT!" Turns out she can re-position herself just fine, and I said goodnight again.
It took 45 minutes to get her from the couch to the toilet to lights out.
And somebody alluded to caregiving elders as akin to caregiving children. No. Just no.
For one thing, I could pick up a kid and take them to bed, and let them scream their little head off. For another, I could use less scream-inducing tactics, like taking away privileges. I could do the Big Count like my dad did. "You have to the count of 3. One......two....." Either way, it would have taken 15 minutes tops. But you can't do any of that with an adult. You just can't. And unlike a kid, if you take away their privileges, they won't learn from it for next time, either.
With a child, you have authority. You are the authority figure. With a parent, they still think THEY are the authority figure.
It really does feel sometimes like she sees me as a servant. Waiting to serve. "Stand at my side, child, until I've decided when you may serve me."
And she is cognizant enough to know what a lift is, having never seen one outside a hospital, and cognizant enough to know it would be a huge indignity for her....so I just find it hard to believe this is all dementia's fault.
This is why I need home support. Because I can't deal with this all on my own, 24 hours a day, 7 days a week. But even in her aware moments, she doesn't really understand why I could possibly need help.
I can't believe I gave her the benefit of the doubt a few posts ago, lol!
She is one of the lucky ones. She is still in her old neighborhood and she has a gal she pays to take her places and bring her stuff from the store. This gal has worked for her since before she had to go to AL. Her neighborhood has huge lots and people are buying them up for insane amounts of money, tearing the houses down, and building McMansions. So, she probably won't run out of money. Nevertheless, she pays someone to help her, she doesn't expect anyone to do it for free.
It's heartbreaking, because it's either let someone live in an unsafe situation or break their delusion and send them into a depressed state.
Sometimes, it is the children who, for example, think dust will kill you. So, they jump in and dust and clean to their satisfaction. Mom wouldn't have anyone in the house, so it got pretty dusty before she would see to clean the dust off. Too, if they don't move, soon they can't move, use it or lose it.
Now, I also know it is hard to get old and can't do stuff. I am getting there fast. For example, my husband and I have always painted and maintained our own houses. My Son-in-Law is a general contractor. Are we going to ask him to paint the outside of the house? Heck NO!!! I am getting a painting contractor to do it for us. Why burden them with the 1-1/2 hour drive one way, and probably the loss of income? When my Granddaughter blows through town (she is a Free Spirit), if she has time and needs money, I have her help me do deep cleaning and I pay her $20.00 an hour, put gas in her truck, and take her out to eat because she is a Vegan and we don't eat that way.
So, to me, to ask your child to give up their life and money for you is nothing more than pure selfishness. Funny, as my mother used to say, "You pay for your raising by raising your own kids".
The question was why so many parents expected their adult children to do it ALL. To do everything for their parents, 24/7, with no help at all.
I feel like some (SOME, not all) people just flew into a rage without really reading the entire post. I really wish people would read before replying. Be responsive instead of reactive.
This is an issue that comes up all the time in the forum. I wanted to start a thread for people to talk about it, a place for people to vent. And also put out a call for ideas on how to manage the issue.
Parents who expect adult children to quit jobs, move across the country, and/or stop caring for their own spouse and children (!!!) in order to look after them, all because they don't want to access the professional or volunteer supports available. What kind of parent expects that of their children?
Parents who refuse the home supports that are meant to assist the family, by giving the caregivers some relief from their 24/7 duties - enabling them to keep jobs, raise families, have social lives. What kind of parent doesn't want their children to have a break or a life of their own?
Parents who expect to be served like kings and queens, night and day, while their adult children have no lives whatsoever. What kind of parent does that to their adult children?
Parents who watch their adult children get sick, have heart attacks, become depressed and anxious. How does anyone watch their child suffer because of the workload they're placing on them, but not actually SEE the suffering?
Some have expressed that dementia is the cause of parents' inability to recognize the problem. I agree that is true in some cases, but not all. In my case, mom's inability to see started long before dementia.
....are parents who are scared their adult children might not love looking after them, either now or someday down the road?
I also think the argument that parents sacrificed for you, so you should do the same doesn't fly. First of all, everyone's circumstances are different. Secondly, most parents CHOSE to have children knowing full well the responsibility. You cannot say the same for elderly, ailing parents. And a lot of the reasons for the ailments are selfinflicted by poor diet, lack of exercise and smoking/drinking. That isn't the case with a child. Add to that the fact that as a parent you have authority over a child and it is a lot easier to pick up said child and load them into the car for a doctor's appointment or wherever YOU as the adult need to go. With a parent, it is unlikely that they will listen to you and they have their own needs, wants and agenda. At times it is like herding cats... It just doesn't work.
Hang in there, Dorianne, and stay firm and steadfast in your resolve to do only what you can when you can. They will survive. And so will you.