Why do so many aging parents expect their children to do ALL the caregiving work?

Sudduedjoy, does your parent know who they are and who you always?

I have seen parents who make their children promise that they will never put them in a facility of any kind. I have seen parents who feel that their children "owe" them caregiving since they (the parents) made the sacrifice of being parents. I have seen children who feel that their parents "owe" them every cent possible just by virtue of being their children. I have seen parents, who never wanted to be a burden, become an emotional, physical and financial drain on their children. I have seen parents who are going without care because their children "need" their Social Security income. I have seen parents who plan for their golden years and stick with the plan... I could go on and on but I will just say this: Whatever situation you find yourself in with your parents, it is not simple, easy or delightful. It is hard. It is exhausting...frustrating...and terrifying. You just have to plow your way through it the best way that you know how and pray that you have the love, the strength, the wisdom and the endurance to see it through. And, in the end, you just hope that you can have the peace of mind of knowing that you have done your best.

Oh, I’m still using that one but it’s not coming up as much as they are getting more adjusted.

Oh cwillie.....I think my mom is a combo of all three! It's really All About Eve-ish over here sometimes! Sometimes she can be persuaded for my sake - this is most common. But a lot of times she denies needing any help whatsoever. (She can be lying on the floor, having fallen, and whining, "Leave me alone!" or "I like it down here!" As if she just decided to take a nap on the rug.) Sometimes she trusts me completely to make all the decisions (especially when dealing with doctors).

Windyridge - actually, now that you mention it, I did use a little JUST UNTIL YOU GET BETTER to get mom to accept home support the first time around!

Dori, I had some luck with the YOUVE GOT TO DO THIS FOR ME approach. When I moved my mom into AL from the hospital the staff there assisted me with 2 themes. First was, YOU CAN GO HOME WHEN YOU GET BETTER IN REHAB, second, I CANT TAKE CARE OF YOU AT HOME. YOU NEED TO STAY HERE TO HELP ME.

The GET BETTER, GO HOME was fibbing but the DO THIS FOR ME was reality. I was done in. Plus my dads dementia had increased at the same time. Mom knew she couldn’t handle him at home any longer. He moved in a few days later , YOU NEED TO STAY HERE AND HELP MOM.

We’re going on 4 months now. Mom’s dementia is catching up with Dads now. Mom has grudgingly settled in. Dad is just in the moment now.

I think there are three kinds of parents - maybe more, but three that I can think of. There are the ones who just don't realize how much their children have been doing and can be persuaded to change once the situation is laid out clearly - like your mom, Dorianne. Then there are those like my mom, she was more that ready to hand over the reins and let me make all the decisions, I guess it is need to be cared for and a willingness to trust the caregiver. And finally there are those who will do without, sometimes at the cost of great personal suffering, rather than admit they can't do something on their own, it is this last kind of people that often have their family dancing on burning coals because they won't/can't allow them to face the consequences of their own choices.

edit:of course if there is dementia all reason goes out the window

Sooooooooooo................getting back on topic...................

I'd love to hear from others what tips they might have that got their parents to accept help, and what you might have done to make them understand that their resistance was causing you to lose out on your own life.

This is how I've done it, so far.

A few years ago, when I was seeing a counselor for some other stuff (one of the people in my career network turned out to be a pedophile and I lost my sh** over the number of colleagues who were turning a blind eye out of cowardice)....the topic of my mom's refusal to move here came up. I'd been working on mom for a year already. (Like everything she doesn't want to do, she'd say, "I'll think about it.") My problem was that I knew darned well mom would start to need more involved care soon, while she was content to stick her head in the sand.....and she would become too ill to make the move at all.  I'd have to give up everything here to go care for her there - in a city where I didn't want to be, and where there was no future for me. All my social supports, my career, my community, the home I'd spent 2 decades building for myself - the only "safe" home I'd ever known in my life.....I would lose them.

My counselor told me that, while she might resist doing something that was obstensibly for HER own good.....as a mother, she would move mountains for the sake of her children, and that I needed to tell my mother, in detail, everything I would lose, every way it would impact me, if she didn't make the move.

Well, I felt guilty and selfish as hell, turning the issue of mom's care needs around and making it about me. But I did it. It took three days of arguing about this, but in the end, my mother finally understood what I was going to lose, and agreed. In fact, she made the choice so decisively, that she called the real estate guy the day she agreed, and told him she wanted to sell the house! He came the next day and she signed the paperwork there and then.  I came back here, toured every apartment that was on the market with a video camera, and she happily chose this one.  She even said she "knew" that this was the one, her home. 

This is one of the few things that still works for me. When it came time for home support, she resisted the idea for months. I was exhausted and in constant pain from my disability. We screamed and yelled at each other....then I remembered my counselor's lesson. I finally sat her down and described in detail all the work I was doing (which she hadn't noticed), reminded her that I'd sublet my own beloved home to stay with her, told her how many career opportunities I had lost and how many ways my social network was slipping away from me, and described at length physical pain the work was causing me.  I also told her that I was the one who needed a routine and some structure, so I could plan my days around her care needs.  I even got the renal social worker talking to her about the same issues when she was away at dialysis. Kind of an "attack" from both sides.

She actually, grudgingly, agreed to receive SOME home support. It was only a few visits a week, but getting them in the door was the main hurdle. Now, many months later, she is used to their "intrusions" (as she thinks of them), and has even come to enjoy the gentle pampering they give her.  And the big one....whenever I tried to care for her, get her to do something she has to do (wash, eat, change, take her meds, get ready for dialysis), she was nasty as all hell to me.  (One time, she hit me!)  And we'd just fight and fight.  With them, she would become mild and even sweet.  It cut down the fighting by leaps and bounds.

This winter, when mom got much worse, I started burning out in a big way, and I was in physical agony trying to keep up on all the things that had to be done. We were fighting again.  I kept TELLING her I needed more help, but she kept saying she was going to get better and not need it. (She wasn't; she isn't.) This time, though, after a trip to the ER with mom, I just went ahead and arranged it, and told her it was happening. She grumbled and argued some, but this time, I really put my foot down.  I said it was ME who needed the help, and....

.....I told her it was either we have more home support, or she had to go live in a nursing home, because I was no longer able to manage the level of care she needed with my disability.

And that's where we are now. Home support comes every day, twice a day. On dialysis days, they come three times, and I also get two four-hour respite blocks per week. Truth is, she's too weak to put up a fight now, anyway. And I really don't know how I'd manage it without them.  I don't think I could.  I was at my wit's end, and I think it really WAS a case of my way or the highway.  She's accepted that if she wants to be in her own home, this is the way it's going to be. 

Anyone else had success with the "it's to help ME" approach?

Any other things that have worked for you?

Hi soccer100.

I'm not relying on conventional meds to treat my FIL's dementia. Studies show that the meds don't work. So we use light therapy and diet. The brain is the fattest organ in the body. It needs healthy fats. Dinners are low in grains, starches, and sugars and high in healthy fats, such as avocado oil, coconut oil/milk/cream, and fatty fish. In regard to light therapy, we have instructed my FIL to keep the lights on during the day. He was turning them off, probably to save electricity. It's good to get full-spectrum light bulbs. He also takes a morning walk. One of the reasons the elderly can have trouble sleeping at night is that they take naps during the day. Light helps keep the body from producing too much melatonin during the day, and this helps them to stay awake. In the evening, lights should be dimmed to help the body produce melatonin so that they can sleep. Light therapy is an alternative treatment used to treat Sun Downers. There are other alternative treatments for Sun Downers, but I've found light therapy to work well.

Go away, troll.

Dorianne, stage of dementia parent?

Myownlife - I hear that totally! I don't know if my mother is a narcissist - I don't think so - but she definitely does seem to have a need to create discord.  Moving her here and caring for her is what made me open up my eyes to her role as the instigator of hostility and conflict in my family when I was a child, and her later manipulation that nearly severed the adult relationship between my brother and I. I haven't seen this side of her for a long time, but now I see it with the fresh eyes of an adult who's more aware and educated about family violence.

I never felt like I had any space from mom either, no breathing room, as you say. Even as an adult when I went to visit. I do think that's why I ended up settling away from her, near my father and stepmother - even though I probably wasn't as aware of those reasons at the time.  So caring for her turns out to actually be really oppressive.

A small part of me will miss her, but mostly I am looking forward to finally being free.

And I am also grateful to have this place, where I am at last able to speak my truth, and where I know I'm not alone.

soccer100, I am sorry for you and your situation, but as Dorianne says, we who complain need help! Thank God for a place to ventilate and let our steam off. If you do not like it, then start another thread and complain. I for one have a mother who is living with me who has been narcissistic all her life and made me into "her only one"..... this has had a devastating affect on my relationship with my children and the rest of the family as I did not fully understand this and the repercussions until the last year... I am 64. I still have that awful need to "do right by my mother" and finally understand that it is NOT my fault, that she is not going to change and that as long as she lives, she needs to have that "other person" to agitate and create an argument to allow herself to "compete" and feel she is better. She has never had friends, never any social activities, and my only other sibling passed away a few years ago. I for one, will NOT miss my mother when she dies one day.... my greatest fear is that she will run me into the ground long before she dies. I still remember the look of desperation on my dad's face near the end when he was asking me to help him.... and didn't understand then the burdens she had placed on my dad during life. I DO wish he were alive and that I could have understood all of this while he was alive so that I could have had an adult relationship with him. But mom was ALWAYS there, every minute of every day, never gave me any breathing room, and now I realize, none for my dad, either.

So, soccer100, don't judge others.... we ALL have our problems and our breaking points, and this site has helped me so much to not feel alone since I found it a week ago. I wish you well, and time to heal.

soccer - if you are sick of people complaining about caregiving, then maybe a thread I began FOR people to vent is not the place for you to hang out.  There are plenty of other threads, and gosh, you even have the ability to create your own.

For certain, I intend to KEEP complaining here, and there's nothing you can do about it.  I am immune to your guilt-mongering. 

My previous posts directed at caregivers complaining about caring for their parents. Do all caregivers here rely on conventional meds for the Alzheimer/dementia person?

Dorianne, I wish my dad was on earth to continue caring for him way before his illness

Dorianne, I am not placing myself aside from others. Just sick of people complaining about having to their parent/parents. My father acquired dementia from doctors wonderful meds and their ignorance to seeking other forms of treatment. After their meds destroyed him, they chose to place him in a nursing home after they destroyed him with their so called education. How many time a day with combative and aggression doe your parents sundown. Humble I am very aware of. Sick of people about themselves complaining, which I have mentioned before.

I guess the thing about planning your own elder care is....it's like having a baby without an ultrasound, lol. You never know what you're going to have until the time comes!

When my father had Alzheimer's, he was actually a very sweet person, very innocent, almost like a child. (A big, heavy child who grows whiskers!) And my stepmom was in charge of her mental faculties till her very last days. I suppose that's why I thought it wouldn't be so difficult to care for my mom. So I sure didn't expect to get the nasty, combative, help-resistant person I got with mom's dementia!

Every situation is different. Every parent is different, even in the same family. It seems so tough to even know what to plan for....I guess you can plan for every possibility, but only if you know all the possibilities to expect.

It seems weird to think about planning my last years now, when I'm only 49....but the possibility of me getting dementia is strong, with both biological parents having had it. I guess on the positive side, I might still have time to start saving up for the kind of facility I'd want to live in!

Maybe I should take that idea I had about opening a senior's home and cat rescue seriously, lol!

Thanks joy. In our case, there is no possibility of me (us) being cared for in either of their their homes. It is more a manager type of job, as I have done for mother. Each to his/her own. No one solution fits all, but communication is always good.

I should add that neither of my sons have wives who could cope with caregiving,  nor would I assume that they would, so it will be squarely on their shoulders.

Hi Golden23.

Talking with your children before it happens is a great idea! I, too, have talked with my children, and I've told them that they can hire help if they need it. I've been surprised at how receptive they've been. They're already showing that they want to take care of me by cooking for me whenever I go over to their homes. But then my kids have seen how to take care of the elderly at home. They know what's expected. They know how to minimize any difficulties. Of course, they might never get the chance. My husband could outlive me. But it's still good to prepare them just in case.

isthisreallyreal - good points. My kids know my wishes as they have been the same all along, but putting it in writing is good. We are following the pattern of my mother and sig other's parents - ALF then NH. It is easier here in Canada where good care is affordable and available. This is assuming we all have our marbles when we move to an ALF. If not, probably one of us will have them and work with the family to accomplish what is needed.

dori - the two boys will, I think, see it like a job. They have always gotten along though are not best buddies. The more difficult one would be dd who wants to take control. Neither son is like that, nor will they have the challenges of hands on care that you are having. I have yet to check with middle son and find out how he sees it. I have read here where joint POAs have worked in some families. The other alternative is two POAs acting severally meaning they can act independently of one another, and thus split the work. Acting jointly, in this day of technology, is, I think, easier than it used to be.

The problem with my parents (who passed away over a decade ago so this is somewhat old "news") was two fold. One - my mother was extremely private who was basically terrified of anyone finding out anything negative about the family and the second reason was her siblings basically stole everything from her mother's house while she was living with my mother (and prior to that stole from her business). Thus she didn't have much trust in a caretaker not being a thief. So....right or wrong it's hard to argue with the past experiences.

golden - my mom set up joint POA for my brother and I, which states we have to work together....which was fine when we were getting along. Not so much during the recent times of discord! Things are better between bro and I now, but I wish she had just picked one of us, to be honest.  I don't even really care which one of us.  I just wish it were simpler. 

Isthisreallyreal - I agree parents should put their wishes in writing, but parents also need to think about all the possibilities they don't want to face when they plan that kind of thing. My mom told me (verbally) that wanted to "go" the way her father did...staying at home independently and then spending a few days/weeks in a palliative hospice unit when it was her "time." Well, that's a great way to go, except he was healthy as a horse until a car accident put him in ICU, and that's how he ended up in hospice. I do wonder, if she'd known how sick she was going to get, or that she was going to get dementia, would she have still wanted me to give up my life caring for her at home until it was time for hospice?

If parents would put there wishes and intentions in writing it would safe much heart ache for their children. My dad and mom both change their minds with the wind, then get mad because they don't get what they want. How am I suppose to know, nothing in writing and constant shifting, narsisist behaviours. 

Golden put all of it in writing for your children, then they don't have to make decisions, just follow your wishes. I feel that is the kindest, most loving thing that can be given to anyone asked to be a POA. May it be many, many years before it is an issue for you.😘

Still considering which of my children to ask to be POA for me. I want it to be as easy for them as it can be. Sig other and I will move to an ALF when we cannot manage in our home. I was thinking of asking my dd and oldest son to be co POA's, but dd has health issues, so I am considering asking my two sons to act together.

I have spoken to my oldest son, whose answer was to the effect that it was not a job he wanted, but if I asked him to do it, of course he would. I appreciate his honesty and his willingness. Truthfully, I think many offspring feel this way. If I had been completely honest with my mother I would have said the same when she asked me. It is a job that has to be done by someone. I assured him it largely could be done by distance, successfully, and that I would set it up to be as easy for him and ...as possible.

Never would I ask my kids to be hands-on caregivers for me. I would not do that to them. I want them to continue with their own lives as much as possible.

Hi Bbtwinks. You make some very good points. And yes, outside help can be very expensive and quickly erode savings and any inheritance. I was shocked when I found out just how expensive assisted living costs.

My father, who passed in November, wanted desperately to stay at home but he needed someone with him 24/7. We managed this by having health companions from Home Instead around the clock. When we set this up, I told my dad that my husband and I would do everything we could for him but that we would need help since we could not be with him 24 hours a day. He accepted that although it was hard for him. I think the thing that upset him the most was having "strangers" in the house invading his home and his privacy. For my dad, losing his independence and ability to take care of himself was excruciating for him and was a source of embarrassment for him, too. I think it was easier and less distressing for him to accept our assistance because of the love and the familiarity . You can find a wonderful and caring person to provide care for your loved one but only you can provide the love and comfort that comes from family. We are their "blood" and their legacy. We understand them as no one else can.

In addition, I think that some parents might think that their children should "earn" their inheritance by providing caregiving. Or, that any money saved by not hiring outside help, or paying for care in a facility, will then be there for them as their inheritance when the time comes.

debdaughter - end stage renal failure is stage 5, which is where mom has been for some time. She is dying. It's not a question of worrying. Mom was never going to get better - without a transplant (she decided not to put herself on the list because of her age), renal failure was inevitable. Given her age, poor diet, and inactivity, the speed of her decline was inevitable.  I formally requested having her designated "palliative" last month. "Palliative" where I live is based on the doctor's assessment that a person has less than 6 months to live, more or less.

As to hallucinations - as I say, I don't really know what's up with her kidnapping delusions, as I can't get her to tell me much about them.

I don't think metabolic derangement has much to do with the way food is kept so much as the way your entire metabolic system gets messed up because of your diet. Renal patients have a huge list of foods they are not supposed to eat because their kidneys can't excrete the waste build-up, and dialysis can't remove it. They have to eat low protein and low salt, and avoid things like potassium, phosphorus, and certain other electrolytes. If those elements build up, they create a toxicity in the blood that contributes to metabolic problems.

Dorriane - "metabolic derangement", wow, I think that could have played a factor in my dad's; I mean, when you have to through out food from their refrigerator because he was buying those big industrial size cans of beans? and fruit because they were cheaper - yes, by oz/serving, when he started, especially after mom passed he was still savvy enough to know that - but then not storing them in containers - think he knew how to find those? but just leaving them in the cans, where, yes, mold was growing on top; they were ruining, think somewhat broke him of that, maybe had something to do with the fall and the fire, when we started getting people in but not really sure they did much food prep, just worried about him like the rest of us, until he did finally get his grandson to move in with him, after talking about selling and moving to assisted living, then gs had an Italian girlfriend move in who loved to cook so his eating actually improved, not so sure his dementia actually affected that, though I know it does many, including my aunt, his sister, who wouldn't eat hardly anything except sweets, as have heard mentioned on here, but with dad at least until really close to the end; don't know what makes the difference in things like that but re the whole dialysis/dementia thing what I was actually talking about maybe was more hallucinations, as think said; are you talking about anything like that with your mom? anyway, didn't really find out about dad's renal failure until maybe his last couple months, when maybe something about it came up on some of his lab work? unless you go back to his hospitalization he'd had maybe the year before and then finding out about the fiasco with who'd been supposed to have been managing his care, so who knows, maybe his renal failure - I was thinking that was the stage you were talking but, no, see now, what was, but do you know what stage renal failure she's at? but having said that he never did get back to where he was before that happened but maybe if his care had been managed better....but when they're out of state, like ours/mine, at least out of town - and don't want to worry you....

(((((SueC1957))))) I am so sorry you have had to endure that. It must be incredibly difficult and painful. I know heroin is one of the hardest things to beat, but I do hope things take a turn for the better.

soccer - It's been nearly a week since you first posted in this thread, bragging, "The work I did for my dad, you could not bear or grasp. All those I have spoken to, tried to compare themselves to my experiences till I put them in their place...." What hole inside yourself are you so desperate to fill, that you STILL need to be here spreading the news of your obvious moral superiority?

"For all those who exalt themselves will be humbled, and those who humble themselves will be exalted." Luke 14:11