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.
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WE are the ones to change it - our parents won't. They are happy - free help and get to see their kids. How do they know we are stressed out without telling them? We need to. We need to give notice - "mom, as of Dec 1 I will no longer be able to clean your house for you or bring your groceries in. I will still take you to some doctor appointments" and have some resources ready for house cleaning or grocery delivery. If they do not accept the options - then they need to figure out alternatives. A parent that loves you will accept that you are stressed out and want to relieve you of the burden.
My SIL has for three years gone to my FIL/MIL house every week to clean, take out garbage/recycling and do the laundry because my MIL has bad arthritis and bad knees. She also brings in groceries every week. Yet, my MIL/FIL go to the gym three times a week for Tai Chi and go for walks. If they can go to Tai Chi - they can walk around with a feather duster. If they can go for walks - they can walk behind a vacuum cleaner or a swiffer. Or rather my MIL because my FIL will do absolutely nothing in the house - women's work.
My SIL vented to me that she was exhausted and really wanted to take the opportunity to teach YOGA on Saturdays. I suggested she hand in her notice - inform the INLAWs that as of XX date she would no longer be doing their cleaning etc for them. Offer some suggestions as to house cleaning service or on line ordering.
You would have thought she suggested putting them on an ice floe and shoving - they had a cow. She "gave notice" and my INLAWs flipped out. But she and I had role played. After she kept saying "I have a work commitment and will no longer be able to do this" over and over they started to understand she was serious. Then they tried to guilt her "but who will - MIL has arthritis" and she suggested some reputable cleaning services - but they refused - cost and having strangers in. She didn't comment any more - not her problem. They tried to negotiate other days than Saturdays - she said "I simply cannot do that" they accused her of being uncaring - she said "I care. I did this willingly for you for three years. I am letting you know ahead of time that I no longer can so you can find alternatives" and stuck to her guns. Calm. Don't talk to much so they can't argue with you about it. and remember - this is not her problem to solve.
I think we have a hard time saying "no" to parents and since they are happy with the free services - they are not going to voluntarily make changes. It is up to us if we are so unhappy about it. Do what we are willing to do with love - say no to the rest. Yes - they will be angry. But do we continue this path where we are angry and exhausted and resentful? Choose who will be angry. I'm no longer willing to always be the one to do and do and be resentful because I'm too weak to say "no".
This is not only parents - but pushy friends who get us to do stuff we don't want to do. The leader of the moms group at church. The sister who loads us up with all sorts of hosting responsibilities for holidays. etc etc etc - Once we learn to say "no" to what we no longer will do, we gain our lives back. Yes the other will be unhappy - we can't control that. Unfortunately, a lot of us will continue on this path because we are too intimidated to make someone else unhappy. Time to stop caring more about others than yourself. Give willingly, stop giving unwillingly.
1) If you're not caregiving your parent(s), please don't tell the rest of us how to feel about it.
2) Looking after your parent(s) isn't remotely the same as looking after a child, who can easily be lifted, changed, disciplined, put in time out, etc.. Children are also capable of learning; adults with dementia are only capable of regressing.
3) Don't assume our parents looked after all of us, or looked after us well.
4) Most of our parents didn't look after US without help, i.e.: babysitters, daycare, free babysitting from grandma, summer camp, summers at grandma's and/or....oh, having TWO parents to spell each other off, instead of being just one adult child caregiver. Many of these same parents are the ones now rejecting supports like home care ("babysitters").
5) Many of us now caregiving grew up in a different time, when children were released to the "wilds" after breakfast and told not to come back till supper time. I wouldn't try that with an AZ adult.
6) Among those of our parents who DID do hands on caregiving, very, very few of them them had 100+ year old parents when they themselves were in their 80s. Science and technology have increased our life spans, but our health still worsens as we age. 40% of caregivers die before their loved ones.
7) Also please don't assume that we wouldn't prefer (in a heartbeat) that our parents spend their money (IF they have any) on professional care rather than saving it for an "inheritance" we never asked for. Indeed, many of us have begged them to do so.
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I did start this willingly. I admit. I made a deal with my mom that if she moved up here, I would not be the one to put her in a home if I could help it. She gave up the city she was born in and the few friends she had to move here. The reason I made the deal is because I knew darn well I could not be there for her at the end of her life, if she remained where she was, without losing everything I had. I didn't have the means to travel to visit her at home or in a care home, and I certainly didn't have the means to put my life here on hold when she was in palliative care or hospice...not being able to go back and forth meant I would have had to give up the (rental) home I love, all the work I've put in to be a performing musician here, and my support network of friends.
I wouldn't even mind doing this if she would not be so frickin' stubborn about home support services! But if I'm not here when they come, she doesn't even answer the door! If I say they're coming over at X time, she'll snap, "What for?" No clue, no acknowledgement of everything I do. She'll just say she doesn't need help. She'll say, "Leave me alone!" And then she'll fall on the floor and remain there till I show up. Or she'll poop her Depends and not change and get poo everywhere (for me to clean up). She'll mess up the apartment (for me to clean). Or she'll not eat or just eat junk (making herself sicker and more dependent). Or she'll not bathe or change for days, sometimes weeks. She certainly won't take her meds properly.
After 8 months of actually staying at her place with her, I was definitely at the brink of putting her in a care facility, until the doctor told me the diagnosis at the end of February. And again, I really wouldn't mind being here for this if she weren't so nasty to me about home support.
Two weeks ago, I finally told her we're doing things my way now, or she's going in a nursing home. That those were her options, and that I'd gathered enough video evidence of her dementia and inability to care for herself on my phone to make my case to the doctors. (Not true, but she doesn't know that.) Having no choice but to accept this deal has made her nastier than ever, but also more compliant. I'm learning to live with the nastiness. When she grumbles about home support, I just ignore her like she was a child who doesn't want a babysitter.
The funny thing is, my mom really has no clue what it's like to caregive for an elder. I've been down this road, first helping my stepmother look after my father (dementia). Then holding my stepmother's hand through her hospice experience (though - she was truly someone who took charge of her own end of life and actually DID refuse to be a "burden" to anyone). But my mom's mom died when she was 54, of skin cancer. Her father lived with his younger girlfriend until he died at 92 - and he died because of a car accident. He certainly never had even a hint of dementia. Mom didn't have to do much of anything except help out managing grandad's garden when it became hard for him (which wasn't much of a burden on my mom, since she loves to garden).
Anyway, I do have more home support in place now, as of March 1. It's a HUGE relief. I can't even believe the difference it makes to me. She still doesn't see it, still doesn't get it, still doesn't like it. But yeah, I'm done letting someone who's basically a tantrum-throwing 4-year old, mentally, make decisions about her own care and home life.
My first full respite block starts in an hour. I'm going swimming, y'all! Then they'll come again at dinner time to feed and medicate her, and then again at bedtime to clean and change her. She doesn't turn her nasty side on them, so things get done and my anger at her is subsiding. It's a huge weight off my shoulders.
In her head, I’m supposed to give up my job and take care of her. Once she even said, “You don’t have to work, I get Social Security.” Never mind the ethics and morals of that, it would destroy my own chances for financial security in my old age.
I’m not only fed up with her expectations, I’ve run out of patience with her attempts to manipulate me. And that’s what her “martyr” attitude amounts to.
In my father’s case it’s because he’s a narcissist, always has been. He forced my mother to wait on him hand and foot through manipulation, verbal abuse, stubbornness, ‘the silent treatment’ and occasional diamonds, cars and other goodies. My poor mom and her knee and hip joints gave out but she always had friends and her own business she ran lucratively. So I’d say she was happy, but I sure as hell wouldn’t be!
My mother is not demanding and I knew she’d feel like she was on a cruise at the ALF that she chose for herself. She had gotten very confused and frantic about running the house (she couldn’t keep up poor mom). We got to a bad point where she stayed locked in her bedroom and accused my dad of drugging her.
We got her mental assessment done and she was put on a very beneficial drug that’s helped her a lot. She loves her ALF. She has girlfriends!
A theory of mine is that my parents grew up in the Depression and back then people kept their old folks at home, they all pitched in and found tasks for the older person to help out. So these memories are in their heads and they also get that ‘I don’t want to be a burden’ nonsense from then.
Everyone, remember back to your childhood. Did your grands come live at your house when they ‘got down’? Mine sure didn’t. The minority of older people lived with their kids. Most life spans reached 80 if the person did well.
But never forget the narcissist, don’t most families have one? Or is it just my family. Dad, his sister, my grandma (paternal), dad’s brother, my Mom’s little brother, etc.
I’ve thought about it a lot.
I’m a long distance caregiver. My folks are in care now but not before years of driving me nuts by refusing any and all,help. I had to wait them out, finally a bad fall then hospital to AL move.
My mom is coming up on 87. Without drugs and major medical,interventions she would have died at about 70. She has had about .02% quality of life for the last 5 years. Mom loved it when I’d make the trip and spend a week cleaning, cooking, fixing, driving etc. but meals on wheels? Cleaning service? No way. We’re just fine!
I've tried talking to Sisters that this is no longer sustainable. Mom can afford it, but there's no money for real paid help. Had them all talked into selling the Mom's house, moving Mom into Sister 1's house. Yep. A couple days later after I invested time and energy I can't afford Sisters did a 180 and now S1's moving in with Mom when I leave. Augh! Fine. I told them they'll be the one in the trenches, so I'll support them. (Though I kept to myself, "You can martyr yourself.")
Fine, I'm outta here hopefully in a month, but Mom has deteriorated to the point I'm not sure when I'm leaving. She's showing clearer signs of her preparing to die. (Stuff to "get off her chest" and wanting to "talk to someone I don't know".) It's insane--or maybe I am now.
Before Mom forgot about her grandson, she'd call him often, not to see how he was doing but to tell him she had stuff around the house he needed to do. Poor guy. He had his own horrible stresses going on. He never came over just to see her because she'd always tell him something needed to work. I can't blame him.
Mom said your very words a couple days ago: "I don't want to be a burden." Well, what are we supposed to say to that!? I've told her a couple times in the past that all of us kids put out enormous energy keeping her in her home.
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