Are we caregiving too much for our parent(s)?

looloo, that is an aha moment for me about what you said, that your Mom drags out every task.... NOW I understand why my Mom has been doing the same thing for decades as a full-time housewife. When my Mom does laundry, she never runs the items through the dryer until they dry.... she warms them up a bit, then carries everything down to the basement where she hangs the clothes on clothes lines to finish drying.... years ago it was outside on a clothes-line reel.... at 96 she is still doing that.

A loooong time ago, I read that book "The Feminine Mystique" by Betty Friedan, and I'm probably paraphrasing -- she was referring to that era's (not so) happy housewives, who wanted all the new appliances and time-savers, but didn't want these things to save them "too much" time -- because it was all their lives were about. Betty said "the work expands to fill the time available" and I see that with my mother. Part of it is the dementia making her so much slower, but it's also that she has NOTHING going on, and so she drags out every task, and dramatizes everything to increase its importance.

I think when people have little to do with their life this is how people are, regardless of age. No goals, dreams nor a desire or ability to be active in other people's lives. They also talk unseeasingly about nothing.

bloujeanbaby, shopping with your Dad is identical to shopping with my parents.... like, what is it with buying only one box when I had searched and searched for a particular item they needed? My parents will say they can surely find it cheaper elsewhere, so just buy one box now.... [rolling eyes].

I know I have to find the word *no* and put it in my vocabulary.... I know I have spoiled my parents because when Dad first stopped driving I thought he would resume driving at a later date. So, of course, my S/O and I took them where ever they needed to go.

I know Dad was heartbroken he could get back behind the wheel and they couldn't go out on a whim 2 to 3 times day like they did in the past.... Mom would find 3 or 4 items at another grocery store that were on sale so she and Dad would go... then onto a 3rd grocery store, then a 4th. Yikes. I don't shop that way... one store for everything, and if something was on sale, I stocked up like I was going to hunkered down in a blizzard for two months.

All this is such a huge learning curve.

Freqflyer, What I see you doing is "taking the bait" instead of making a change. Your folks certainly have the freedom to find other ways of getting what they want. When my dad wants me to take him to the store because he's out of diapers---well, that's something he needs & must have (I think to myself)-- so I take him. If we get there & they do not have them, he wants me to try store after store until he gets the right kind. I would prefer that we find them ahead of time on the phone, internet, etc., then pick them up. But, we do it his way. When we finally find them, he buys one box." Really?" I tell him, "help me get all of these off the shelf---we're buying them all! "(Since this is the only brand/kind that will do--which I, again, totally understand). "No." He states, "I can't afford that." I'm like, "WHAT? Are you kidding me?" The point I'm trying to make is that I know how to make life simpler for us both and there is nothing wrong with that. So, when your parents insist that you go here or there and not like this, but like that.....it's not that you are doing anything wrong. You are like a puppet that they find easy to manipulate with lame reasons for why you can't do this or that for convenience sake. See I get Dad the right diapers. He gets what he wants exactly. I know he will need to get more diapers in two days & want to spare myself the hassle of unnecessary trips to various stores. He always has the $$$ in two days. It's okay for me to want to avoid hassles! I have a right to speak up for myself, right? The manipulation comes into it when he sees how much he can make me do before I can't do anymore. If I am tired of running around and it takes me a week to something that should take about a minute, & I am stressed out trying to do exactly what someone else wants their way, well. Whose fault is that? I know what works for me. The offer is on the table to help you out. Simple. You reject my help because you need me to jump through 3 hoops of fire first and say that is the only way I can possibly satisfy you. I withdraw my offer as it is too much to ask from anyone. So, I say, "No". I can't help you with that." It is the only way. You have to say no & mean it. The worst thing that will happen is that they won't get you to do something once & will see that your offer for help was a gift that you choose to give or not. It should not be expected unless you are taking the responsibility for their choices on yourself and you are the one who will ultimately bear the brunt of those! If you let them do it their way....how can it be wrong? You can't get upset at them for a choice you make to do things their way at any expense. They will try to control you more to satisfy their feelings of losing control over their lives. If you take that on--you are making a choice about your own life. Remember, if you want to help them, let them do as much as possible for themselves. If you do everything for someone, they believe that you don't think they can. I know that problem-solving is important for the mind to stay sharp as possible. There are probably an infinite number of solutions to every problem. What worked before, may not any longer. There are other solutions. Let them explore new ways to get the satisfaction they seek. Praise them for every little thing they do on their own. They need to be needed more than they seem to need. When I ask my Dad "How do you do_____"? I can see his mind go to work and the gears moving almost as if it is sifting through the files for something it finds appropriate and then, offers it. "Wow. That's a good idea" or "I never would have thought of that" is enough to spur the mind on with confidence. Remember, "Use it, or lose it"? Whatever is left is worth saving. If what you are doing hurts you, or causes someone to depend on you because you don't want them to believe they are capable. It may be worse than if you did nothing at all. Where I come from, a person would let an older person have their seat on a bus or a gentleman will open the door for a Lady & let her enter first, even if they are strangers. I will not be offended if this does not happen. It doesn't change me. I know I am strong enough to do everything--if I have to! Only if I have to! So, freq, stick to your guns! And remember: You can pull the trigger--But, only if you have to. It's only if YOU HAVE TO. Stick to your guns! blou

I agree with pamstegman about finding a caseworker for them. In the meantime before you move, you could try "backing off" on the help as long as they are still safe to let your dad see that he truly does need help. If and when he does realize this, you can then have a heart to heart talk about how much it would help YOU to know they were being looked after and cared for when you move. Sometimes taking the focus off of them and putting in on yourself helps them not be so defensive. Kudos to you for all you have done for them! We always take for granted those who we love the most. (( ))'s!

hmmm I don't think your take on the "we'll manage" was what he meant at all! I think he just meant that with you gone (and your services) they would have to make do and find other arrangements. After all, what did you expect him to say, "omg we'll die without you! who will take us to the doctor?" etc etc. C'mon...his reply was a polite and rather unselfish response to your announcement. I'm sure inside his head he was panicking but didnt want you to know so you could go without guilt. Give your dad some slack. I think your reaction to his words were more about your own guilt over leaving them and being so far away. Instead of being so upset about what you perceive as lack of gratitude, put your energy into building a good network of support for them after you leave instead?

Don't leave bitter.

Yes, indeed. These days we are. Advanced medical technology and pharmas have increased life expectancy quite a bit. What was once a few years of caregiving has now become a decade or more. We are allowing ourselves to think it will be like it was when we were kids (at least if you are of the baby-boomer generation) with an elder living a few years at home with attentive family members surrounding them. When there was a major physical crisis, then they went to the nursing home where professional care was. The decisions, labors, and tears were then out of our hands for the most part and that was ok --- THAT's what we've got to understand. We do not have to be a substitute for a nursing home/assisted living environment! We have been tricked into thinking it will be brief and beautiful with lots of happy memories. Sorry folks, it's been 19 years, there is only one happy memory and I coordinated it. I have to jump through hoops to keep a bitter elder happy and safe. She will not agree to end of life decisions and because of this she gets taken to the ER with all the medical stuff done to her. She doesn't want it but won't be adult enough to make the arrangements. She is considered competent because she can recite her birthdate and a few other facts. She practices these before her doc appt so that no "competency" issues are asked. Other important issues, she could care less -- others better make sure they drop everything and do them for her or there is hell to pay. 19 years is too long, too many years of asking if she'd like to do some nice things and she'd say no, maybe some other time. When I'm back to work, then I get the phone call that NOW she wants to do something -- she does it to pull my chain -- she knows I've just used my vacation time. Anyway -- back to topic. The ER events, the must-fix now, the appointments, the drives, the dinners.... years and years and not appreciated. Oh, and the hazardous things they do -- my elder is an alcoholic; there are a lot of scary moments. No, it is not worth it to turn your life inside out. I thought it would be about 3 years and it's been 19 for her as a widow. Before that she was still high-maintenance, but I didn't have to carry a load of "to-dos" in my head every single day because dad was there. Folks, don't get tricked like some of us do. We try at first because we think we are doing the right thing. Talk with an elder planning specialist about many things before you commit to doing it on your own.

GardenArtist, my parents use to do the same thing.... they knew the names of just about every clerk at all the local grocery stores, every teller at the banks, etc. Now that I run those errands, they don't get to chat with those people. But they could if they would move to a local retirement community where they have daily transportation. My gosh, they could learn all about the person who drives the mini-bus ;)

I am to a point where I hate driving and will make a boatload of excuses why I can't drive my parents to where ever they want to go.... told Dad he needs to do what I am doing now, order on the Internet and have it delivered to the house. If my parents need to go to the doctor, I arrange back to back appointments for them so it is one trip instead of two.

And in the past I use to ignore Dad when he was worried about flooding when it rains [we never ever gets floods] but now I am using THAT as my excuse not to drive them somewhere. OMG, Dad, we might get caught in a flood ;)

FreqFlyer, I too have those guilt moments over what are really not major issues. My father likes to pay a few of his bills in person, because he knows the staff at the facilities and jokes and talks to them. So for him it's a mini social event.

For me it's an extra trip, not a good use of my time plus the cost of mileage. When I tell him we'll pay the bill by phone or mail, he looks crestfallen and I feel guilty for depriving him of a social opportunity. But I get soooo tired of driving, especially in this hot weather.

bloujeanbaby, I know exactly what you mean. But the guilt has rented space my head and I can't seem to evict it.... example, today my Mom needed a new battery for her watch and she didn't want me to take it where I usually get our watches fixed.... went someplace new.... the cost was doubled, so now I am so worried she is going to complain when I give her the watch and the receipt. I will probably lay awake thinking about it tonight. I am trying so hard to shake the guilt feelings. I keep telling myself, it's just a watch, and I can easily give my Mom the cash for the repair. She and Dad sometimes still think stuff cost the same as it did in 1970's, and they are shocked when they get the bills.

I've gain some new confidence after being on this website. Gained some fears, too, about what will be next coming down the road. I just need to keep putting one step in front of the other.

freqflyer, My parents are healthier, too. I found an empty tub of margarine that Dad scarfed down with a loaf of bread. Takes cholesterol pills to fix it & B/P meds so he can eat junk! If I tell him NOT do do this--He tells people I " won't let him eat." I am like a dog chasing its tail. You know? How did I get trained to do such ridiculousness? I'm never gonna catch it & it's stupid to chase it ANYWAY! Huh? I think I have plenty of problems without the ones that others make for themselves for ME to try & fix. From now on, You break it--You buy it.. I have put my health on the back-burner long enough. Now is my time to get fixed. Life is a gift & I am going to spend more of mine on me. ( Hee hee) blou

Mudiver, are you referring to the ACOs, the accountable care organizations? I'm completely unfamiliar with any Medicare mentoring program. Just Googled it and didn't get any hits.

Could you provide more information on the Medicare mentoring program? How does it work? Anyone else have any experience with this program?

Thanks.

When this happened I called Adult Protective Services. They did an assessment,put my mom on Medicare amd then got the help she needed. Find the medicare mentoring program in your area, your mentor will help you.

What did you expect them to say?
Obviously they don't want to you to put hold on your life.
Do you feel used? You must have seen a need to help them.
Anyone that age needs help.

Gosh looloo i havnt been on motorbike since i was 22yrs old my brothers friend picked me up down the road on his new bike and when we got to my house which was only 5mins away but felt like 0.2 seconds i couldnt get off the bike i was stuck to it legs like "jelly" he had to peel me off. That was it for me! he apologises 20 yrs later!!

bloujeanbaby, how right you are.... I know my life needs fixing. My parents are healthier than I am, they get to sleep through the night. What is wrong with this picture?

You know, we caregive so much we don't maybe know when to stop trying to fix what isn't broken yet, & worry about our own lives that may be (like mine) totally in need of repairs! blou

Kazzaa, I hear ya! Even now, I have had moments where I feel like I need to be more careful. My husband and I used to go out on his motorcycle now and then. We live in a big crowded, traffic filled city, and after our latest nerve-wracking ride, we both lost enthusiasm for it, big time. I'm perfectly ok with not getting on a motorcycle again.

Honestly though guys can you ever imagine "us" being like this one day? so stubborn thinking we can do it all? i dont have kids but i think id quite like to be in nice NH than bothering to shuffle around and do things when im old and crappy! as long as theres a bar and sky Tv i think id rather be in a NH than living on my own not coping. Well who knows? I just cant imagine me wanting to be old and crappy living on my own and not wanting help?

Oh my gosh Onlee and GardenArtist, what is it with ladders and these guys... my Dad does the same thing, too. All these Mr. Fixer Uppers who still think they are in their 40's and 50's, who don't want to spend money hiring someone. I feel like hiding all the ladders.

I was just about to type my thoughts, but Onlee, you took the words right out of my mouth!

Onlee, my father tells me the same thing: "You worry too much." I tell him I have to because he doesn't!

At age 91 my father was also up on a ladder, in a garage, removing fluorescent fixtures. He had one foot on my car and the other on the very top of the ladder. Given that the fluorescents were being removed, there was no other light. Garage door had to be shut because it was January.

I thought I'd have a "cardiac event" before he finally got down safely.

He repeatedly told me he learned to do tasks like that safely. Standing on the top of the ladder (not the rung, but the ladder itself) is not doing something safely.

My father too exercises, on a limited level, but that doesn't reverse 95 years of life and physical degeneration.

It's taken years for me to control the anxiety he generates.

GardenArtist, he keeps me hopping :) and he's a firm believer in "use it or lose it." I only learn of his "daring feats" after the fact, then he assures me "thing were fine, nothing happened, and not to be a worry wart."

To his credit, he excersises (more regularly than I), breaks large tasks down, and takes 15 minute rest breaks, but still, there's nothing more "care shaking" than hearing how he was up on a ladder, the roof, a tree...

Onlee, it's good to read that someone else has a father who insists on doing things he shouldn't. Not that it's good that they do it, but it's comforting to know that others are dealing with the same delusion that men in the 90's can still do what they did in their earlier years.

Yes, we caregive too much. No, your parents are not in denial. Nor do they want you to live your life. They want you to simply live your life "their way." Which means they make their choices and you sacrifice for them, upholding their facade of independence. They say they'll manage because they will. With you. The way it has been for five years. {{big hugs to you}}

This is the story of my life. They say they'll manage but they'll really cajole, guilt, and manipulate things to keep you where they want you. And as an only child, I bore the brunt of that.

And yeah, the VA may help but only if the ADLs are not met and they are home bound. As long as they don't need help eating, dressing, bathing/toileting, the VA considers them independent and encourages them to stay "in home."

When my dad turned 90, he told me the best thing about being old is no one could tell you what to do. You could do what you wanted until circumstances put you somewhere else.

And a year and a half later, that's just where my relationship with him is. He lives "independently" until his independence lands him needing skilled care or he can now longer perform ADLs. In my case that may be sooner than later: I run my butt off ('tho literally and sadly it's not getting smaller) handling everything for him, making sure he's healthy and safe, only to get a text finding out he's been 30 feet up on an extension ladder scraping paint off a gutter! Yes, I have someone to paint in the fall, but he "just wanted to do it and didn't have any problems."

It infuriates me to know how much I have sacrificed for my parents the last 10 years, especially the last year and a half with my dad to have him cavalierly make decisions like climbing an extension ladder. Yes, we caregive far too much.

I agree they do not want to be a burden and i think its good they want you to get on with your life.

They are in denial and they don't want to be a burden. You might look for a case manager for them. My sister worked for Gentiva but there is more than one option for care. VA aid & attendance should help cover that if one of them was a veteran.