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 wrote to my brother today to tell him mom is on home palliative care now. I described the challenge of persuading her to accept home support as "like mud wrestling with grizzly bears."
I didn't even think it was funny at the time I wrote it. I was just thinking of what I could compare it too so that he'd understand how stubborn she's become, what would be the most difficult struggle you could have, and that's kind of the way it felt to me! Wild, untamed, unsafe, fighting for my life in a way....and wholly unexpected!
I totally agree, Dorianne. I take offense to it as well, and I reported the post based on it. I also totally agree with what Windy said. We need to be realistic here. Medical interventions, not acts of god, have extended lifespans for the severely impaired to the point where they can only be an extreme burden to their families and the larger societies. Society has failed to take any responsibility for the costs and burdens of these extended life spans. It falls on families, regardless of how estranged, encumbered, disabled, or otherwise ill-suited and ill-equipped the family members may be, to manage the care of seriously debilitated elders over a period of years or decades. People are stretched to the breaking point and beyond. I have spent the last 7 years helping to keep my mother alive and for what? She sits in a chair reading mystery novels and watching Judge Judy. My goal for my retirement was to move to a place where my retirement income would support a decent house with a yard, and become a foster parent. Nobody can honestly tell me that a loving God would prefer to have my mother sitting in a chair for years over having me out in the world taking in needy children. This talk about God's will is just sanctimonious drivel from those who don't know any more about God or his will than we do.
1900 world ave.=31 yrs
1950 world ave.= 48 yrs
2014 world ave.=71.5 yrs
according to Wikipedia.
It also matters *where* we live. Africa has the lowest life spans while Japan has the highest.
It would stand to reason that countries with the availability of fresh food and medical care would have higher rates of longevity than poorer countries that lack fresh available food and medical care. Civilized countries have longer life spans than non developed/third world countries.
I could surmise that the people in the impoverished countries would die a "natural" death, living only on what "nature" supplies and not having medical intervention.
We, in the first world nations have ample access to healthy abundant food and quality, cutting edge medical treatment.
It would extend our lives naturally by eating the food we grow but lives would be extended "artificially" (meaning not naturally occurring in nature) by having top of the line medical care. Sometimes we are taking pills to completely counteract what the body would "naturally" do. Then more pills to counteract the side effects of the first pill, and so on.
IF you have many years ahead of you, AND medical treatment improves the quality of your life-great.
But when we're at the end of life and the doctors are trying more and more treatments, when the body is ready to stop, it makes for a tough decision.
It is a personal choice as to when you say-Enough is Enough, and "let nature" take its course.
There is no one right answer. Each person (or their family) need to decide for themselves how much modern medical technology we want in our lives and at what cost. Sometimes preserving life at any cost is too high a price for the patient to pay.
Anyone may disagree with me. These are just *my* views.
Great information. I find it ironic that the one being cared for may get all the medical miracles, while the caretaker basically ends up medically neglected and ends up without those benefits.
Yes. The elderly get confused and angry and forget. But if one of my parents fired a caregiver, I would still respect his/her decision. My FIL hired a caregiver for my MIL who would come during the day. There was one caregiver whom my MIL didn't like. She didn't trust her. I was okay with her, but I fired her anyway. After all, it's my MIL's caregiver, not mine, and it's important that my MIL trust her caregiver. The elderly are people too.
As for putting the elderly on hospice, my FIL put my MIL on hospice. It was unpleasant. She had a UTI and the doctors didn't want to give her an antibiotic because that would be considered care. The problem was that my MIL was in extreme pain because of the UTI, and the pain killers weren't working. I made sure she got that antibiotic. She died not many days after that, but at least she was in far less pain when she died.
And BTW, I don't have the best mom. When I was born, my mother lost a lot of blood, got a blood transfusion, got hepatitis from the blood transfusion, and ended up being in the hospital for the first two months of my life. My grandmother took care of me. My mother never really connected with me. She basically ignored me. My very presence seemed to bother her. I was neglected. Still, she's a person, there's value in helping others, and helping my mom sets a good example for my daughters. I used to be a securities analyst in my younger days. I find way more value in helping my family by being there for them instead of in going out and making money.
Another incident this morning where she tried to refuse home support's help getting cleaned and changed, when she needed to be cleaned and changed. And this is after I'd spent a good chunk of my day yesterday cleaning the poo out of her pajamas and bedding (yes, comforter too), , and cleaning poo from the bathroom, after she told home support she was fine and made a huge mess everywhere 5 minutes after they left. Today I lost almost an hour of my 4-hour respite block, one of only 2 I get all week, having to be here, arms folded, insisting she accept the help.
THIS is exactly what I'm talking about. It's not about whether we should or shouldn't look after our parents at home. That's a debate for another thread. It's about our parents' darned stubbornness in resisting the outside help that assists US, as caregivers IN the home, so that we don't end up having heart attacks trying to keep up on it all by ourselves!
I mean, I'm over it now. It's another day over, and another day where I'm still not going to rush to put her in a home. But tomorrow there will be some other battle. It's exhausting!
Honestly? As I get older, I'm even more glad I made the decision not to have children. I would hate to put them through any of this. And who knows what will be going through my brain by the time I can't do it all anymore? Maybe I would be just as stubborn and resistant.
This thread is NOT about whether people should or shouldn't look after their parents at home.
It's about why parents resist outside help that assists US as CAREGIVERS, and what we can do to get that help in place despite their resistance.
Lots of us here, including me, are looking after a parent or 2 parents AT HOME, and are desperate to get assistance before WE crash and burn, ending up sick ourselves - because then, we won't be any help to our parents at all.
And PLEASE, can people STOP telling other people to follow their religious belief system. It's one thing to say, "This is what I believe/follow/use as a guide." Some folks, like Sue1957, provide great examples of how to do this. But it's just narrow-minded and disrespectful to insist others "need to" or "should" follow their religious dictates, or to try to shame others using religious dictates they may not believe in or have interest in.
(Edit: sorry to single you out, Sue, but it's because I have great respect for the way you are able to talk about your faith without imposing it on others.)
Anyhooooooo... Dorianne your thread has put me much in mind of the Lovely Liz, our best and longest-serving HCA. I don't know whether it was natural-born or her training, or both of course; but her approach was a model for professionals. Mother didn't want her there and within the bounds of chilly politeness made her feelings very clear.
Aides have their own guidelines to stick to; they can't lay hands on a caree who's actively refusing assistance, e.g. So on falls prevention - mother would totter off towards the bathroom in her usual hair-raising way, what I came to think of as the "Pinball" technique. Liz started out by asking if she wanted help - certainly not! - but moved rapidly on to discreet intervention. The walker would magically appear in front of mother so she'd have to take hold of it, and it was more trouble to move it out of the way than to use it. Liz wasn't "following" mother to the bathroom, she was just going that way, don't mind her. I'd already officiously taken the lock off the door - NUTS to dignity and autonomy, what about frail elder lying behind locked bathroom door, eh? - so Liz would stand outside and listen for trouble, then knock and enter if need be.
Mother still fumed. It's just that Liz never gave her anything substantial to object to.
The point is that *handling* hostility, rejection, discomfiture or whatever on the part of the client is part of the Good HCA's skill set. A comfortable working relationship has to be built, it isn't a given. Assuming a reasonable level of confidence in the aides' professional skills and experience (I grant that's not something you can always assume) I should leave them free to work on it.
I will say most of them are pretty great in working with mom - but as you say, they have to ask mom before they touch/help her. That's where I end up having to step in and say, "Mom, you have to do X, Y, or Z." Because if I don't say it while home support is there, she will often resist the help on offer, or deny needing it. And I'm the one who'll end up helping her with it later. She thinks this is fine - since I don't use a cane at home, she pretty much forgets about my disability, and doesn't see my exhaustion, ever.
There are a couple of workers that we've had pretty regularly, even before the increase in services, and if I know they're here, I can pretty much go take a nap! So yes, they've been good at that relationship-building. (Today, Friday, is when our favourite lady should be coming in - yay!) But the others, especially the ones new to mom....it's not that they're not great, it's just that they don't get an opportunity for regular relationship-building.
If I had lots of money - as awesome as the workers provided are - I would definitely hire one or two workers privately just for the consistency, instead of doing it this way.
But it only lasts for a few hours after dialysis.
I think she thinks it's OK, though. She acts like we all planned a surprise party that acruelly surprised her.
Edit: also she thinks the phone company women are on strike and she supports them. She may be thinking of telephone operators like we used to have.
Sorry, I was writing that on my cell phone in the ER!
I have a disability thanks to a bad fall at work, and like you, mine is largely invisible, because I don't use a cane or a brace. I have to keep reminding my mom that home support is here to help ME, and I have to speak up about it every time she grumbles.
That might not help if your mom doesn't believe your diagnosis though. In that case, it might be one of those cases where you have to STOP caregiving her yourself and either get her into a care home or just walk away and let the chips fall. It's one thing for a fit, healthy adult to do this work - it's another thing altogether to try and cope with it while dealing with something as serious as MS. And you MUST look after yourself! Your mom has no right to demand you wreck yourself for her sake!
There's lots of advice from others on this forum about how to get resistant elderly parents into a care home. I strongly urge you to make that happen, even if it means dropping her off (or getting your sister to drop her off) at the ER with her medical insurance card in her pocket and telling them she has no one at home to care for her.
As mother has borderline personality disorder and narcissism, strong boundaries are necessary. Even then I certainly suffered health wise from the stress.
Had mother not had mental illness, my route may have been different. Mother's expectations were tied to her BPD and narcissism. I have dealt with them all my life, and have learned to resist being completely overtaken.
having said all that, later, when dad did end up in icu, giving him Haldol was not a good thing; of course they were only doing it because they said he had something called icu psychosis
You might be reading your mom wrong. I also have an autoimmune disease, IBD. I thought my eldest daughter didn't care, but I finally came to realize that she was just having a hard time accepting it.
The medications I've been on don't work. So I had to find alternative treatments. Diet and supplements have been working for me. Have you ever heard of Dr. Terry Wahls and the Wahls Diet? Terry has MS like you. I don't know too much about the diet though. I'm on different one for IBD.
In regard to your mom's refusing help, it's common with the elderly. My MIL initially didn't want anyone to change her diaper. I have IBD and told her some of my colon/poo stories. (I have many.) She laughed and let people change her.
My MIL also had dementia. She didn't always understand us. She didn't always understand what was going on. She also had arthritis. Moving her caused her great pain, but she had to be moved to keep from getting bed sores. And then she also had Sun Downer's and would have periods in which she would yell at everyone. Light therapy helped with the Sun Downer's.
Maybe, the issue is that you've never had children, so you don't understand the work involved and perhaps you also don't see the value in it.
I think the general answer is that someone needs to do it, and there are no better alternatives. Our parents are old, they need help, and they're not capable of even arranging and managing that help themselves, even if they can afford it.
I can't hire help for my mother because there's no money for that. Even if I could, though, there are lots of things we have to handle ourselves, such as the many medical appointments. Even if my mother were capable of getting there by herself (she's not), she has trouble understanding the doctor's explanations, conveying her symptoms, remembering all her meds and what they're prescribed for, etc. Someone has to accept this responsibility, and my sister and I share it.
My mother is a difficult person, although not demented. I get along with her better than any of my siblings do, but that's a pretty low bar. I can't see her more than two days in a row without going nuts with agitation and resentment, and I won't live with her. Kimber suggested above " Give willingly, stop giving unwillingly". I have tried and continue trying to do just that, but I constantly face pressure to do more, and that stirs up resentment. My mother actually said to me "The reason I ask you is that I know you'll do it, even if you resent it." So we're at cross-purposes on this, and that's difficult.
When I first moved to Florida to help my mother out, I estimated her life expectancy as 2-3 years, five at the most (based on her age and health status). I thought I could suspend my personal goals and wishes for that long. But now it's been 7+ years with no end in sight. But now I'm trapped. Can I just stop caregiving and move on with my life now when she's even more disabled and needier than when I first started?
We're all doing the best we can here. "Just stop caregiving if you don't want to do it" sounds like a simple solution, but often it's just not feasible.
Caregiving my mother has shown me a lot of stunning revelations about her, about my family history, and about the ways in which she has worked to emotionally separate my brother (the only family I will have left pretty soon) and I, as well as the ways she has played us off one another, over the last 15-20 years. I vent and b**** about some of those things here in the forum.
I've never said I don't love my mother. She's my mother. Even abused kids love their mothers. Of course I love my mother. What an obnoxious thing to say. Not all relationships are black and white like that. MOST relationships are not black and white like that.
Please don't presume that because I don't have children of my own I am clueless about what is involved with caring for them. I haven't gone through life avoiding contact with children. I have built my family out of step-relations and friends, lived my life alongside them and their children and grandchildren. I was even a nanny in my early 20s. So that's a pretty obnoxious thing to say as well.
For the record, I have been the caregiver to both my father (Alzheimers) and my stepmother (cancer) in their last years of life. This ain't my first rodeo. Caring for them was nothing like caring for my mother.
Yes, I feel taking care of her is a burden, and yes I resent it. I especially feel it's a burden to resent when she resists allowing me to have some HELP in doing it. That's what the HELP is out there for. I especially feel it's a burden to resent when she doesn't CARE how much of my own life I've had to give up, put on hold, etc., simply because of her resistance to allowing some additional HELPERS into the fold - which includes my most trusted family of friends as well as paid home support. I especially feel it's a burden to resent when she is outright NASTY to me even when I am being kind, which is something I have described many times in the forum. I especially feel it's a burden to resent when she HITS me, as she has done once, and has almost more than once (but thought the better of, after seeing the look on my face).
However, if I didn't see the value in doing what I'm doing, I wouldn't be doing it, would I? I would pack her off to some anonymous home, instead of putting my head down, doing the work, and venting and b****ing about it here, in what I consider the only SAFE place I have to do so.
Not everything in life has to be depicted as unicorns and rainbows. I'm allowed to complain.