Why all the guilt and soul searching?

You’re absolutely right. “Freight train”, too, is how I describe my mother-in-law (MIL). She’s been off the tracks and heading straight for us for years. Last week, I called the Domestic Violence Hotline — for myself. I have been on the phone for hours since we moved MIL in w/us in Aug 2017 out of economic necessity (no money - no easy way to deal w/this). I have been passed around from agency to agency ever since. We’re just short of calling 911, Everyone I speak w/professionals as well as what little family we have, says to call 911. After hours w/a local city dept. of aging last Friday (which, judging by the call, is held together by little more than fraying string and gum and kindly volunteers who don’t know how to work a computer) I *think* we’re going to get a call from a Crisis Intervention team tomorrow (the city is on holiday today). I doubt they’ll actually come but if they do — I’ve been begging for intervention — I dread the fallout from the MIL. It’s fear no matter if we do something, or not. I’m sick of fear (the other side of anger — all three of us have devolved into shouting matches), and her verbal and at times physical abuse.

I’m the one who does the hard things. I’m the bad guy — in that I’ve moved that woman twice now, out of necessity — and she screams at me that I take her stuff. Well, lady, I moved your shoes, and bedding, and clothes, when you said you didn’t want any of it. I flush your toilet when you don’t, I clean the floors, your bathtub, and take out your trash. I turn off lights when you don’t, the stove when you don’t, the water that you leave running in the sink, when you don’t.

My work (we work at home) is suffering because of all this. I’m making mistakes.

MIL used to sit at our table (as a guest, when she had her own place) and glare at me as if she’d take a knife to my throat. My wife of going on 19 years now, would notice and say, “Hey, what’s up? Why are you looking at K like that?” And make her stop.

I’ve bent over backwards for this woman — put my body and our money into moving costs, a hoarding-hauling service, advised her of free and low-cost dental and health services — because she won’t care for herself. Her teeth are rotting. But she keeps her body clean. And her clothes: she washes them in buckets in the tub — goes on for hours — rather than give me to launder for her. (At times, she’s “let” me do her laundry for her.)

I won’t be her victim. She hates that I won’t wilt as she pushes her face into mine, after storming up the stairs mad about something, AGAIN. When things are better, and I try, with true sincerity, to connect with her, she’s sarcastic w/me, at best. She’s confused. She doesn’t make sense. Her judgment is off. She makes the simplist things complex, the most innocuous things contentious.

I’m being self-pitying singular, here. My wife, too, has suffered. She supports all my efforts. But she’s not the one who makes the calls, writes the letters (to MIL’s last known doctor). My wife has serious chronic illnesses. She’s just trying to keep our business going under remarkably difficult economic challenges while dealing with relentless physical pain, nausea and exhaustion.

So be it. I’m done. It’s either a Crisis Intervention, or wait until the next “thing” — Lysol sprayed in my face, hit at, sworn at, cornered and menaced and most recently, a box thrown at my head. Because I only suffered a nick, and I’ve read all these stories on this forum of how many are suffering more than I, and because my wife, her only child, said “No” when I asked if I should call 911 this time, I didn’t.

Bjork has a cathartic song, “If you Complain Once More” (again, catharsis). Well, to paraphrase Bjork, this rescue squad isn’t coming, anymore. I’m too exhausted.

Once again thank you!! My stepmother kept my Dad at home so she could spend his money on her family. Unfortunately she died from cancer,which she knew about. I have proof, my Dad refuses to think bad about her.
My life sux at this moment but after reading your post I know what I need to do for me!!!!

Every family deals with end-stage Alzheimer's differently and when you really deeply love someone it is hard--if not impossible--to just chuck in the towel and "let them go". However, caring for someone who is mostly dead weight is very hard which many families do not have any other choice but opt for institutionalized "care" which in reality hastens their death. I care for my mom who will be 90 in five months with end-stage Alzheimer's and has made my life a living hell not to mention what this has done to my finances - regardless I truly love and adore her; so painfully aware when she dies I will never see her ever again. This may destroy my life when she dies. I do not know how I will be able to cope with her loss. Being her caregiver for 10 years has done this to me.

Pandabear,

I believe Australia has a much different way of dealing with elders. Here in the U.S. the cost alone is staggering. Most nice, well staffed, assisted living facilities cost upwards of $5,000 a month and if you need memory care that cost is doubled. Where do you find the money for that? And if you do have the money then you get to play the how much money does your person have vs. how long do you think they'll live game.

Yes, when they run out of money they can apply for Medicaid but Medicaid gets to decide who receives it and they look back a period of time, usually 5 years but it depends on the state that you live in how long they look back. Only after they decide your loved one can receive Medicaid do you receive it and then you have to find a nursing home or facility that ACCEPTS Medicaid. Mind you, some of those facilities pay their staff an hourly wage less than they would make at McDonald's.

Also, you as your loved ones advocate, don't get to pick which facility YOU would like them to go to, they go to the one that has an open bed. Period. That is how it works here in the U.S.

Pandabear
Thank you!!!!

Very simple...she is Mom. 'nuff said.

Pandabear,

I believe Australia has a much different way of dealing with elders. Here in the U.S. the cost alone is staggering. Most nice, well staffed, assisted living facilities cost upwards of $5,000 a month and if you need memory care that cost is doubled. Where do you find the money for that? And if you do have the money then you get to play the how much money does your person have vs. how long do you think they'll live game.

Yes, when they run out of money they can apply for Medicaid but Medicaid gets to decide who receives it and they look back a period of time, usually 5 years but it depends on the state that you live in how long they look back. Only after they decide your loved one can receive Medicaid do you receive it and then you have to find a nursing home or facility that ACCEPTS Medicaid. Mind you, some of those facilities pay their staff an hourly wage less than they would make at McDonald's.

Also, you as your loved ones advocate, don't get to pick which facility YOU would like them to go to, they go to the one that has an open bed. Period. That is how it works here in the U.S.

Thank you for your post Pandabear. It is exactly what I needed to read this morning! This site has been so helpful in keeping me sane while my Dad is slowly dying of CHF. He has been in an assisted living facility for about a year and the guilt I have felt in having them there instead of still living with us has been high at times although my husband is right, I was so stressed when he was living with us. I'm a different person now. Seeing his struggles is still very, very difficult but at least I have a sanctuary (my home) to escape to after visiting him.

Read just latest post. I understand where you are all coming from. The original post is a little blunt but true. Putting Dementia aside, they have no control of their minds. I blame the parents that still are cognitive. That they feel this is what their children should be doing for them and expect it. Even though the majority probably never cared for a parent because they didn't live to be 80 and 90 years old. I feel, if the money is there, they need to be aware that they need the next stage. They need more care that an AL maybe able to give.

Thank you, this is good to see this morning. I am an only child, 51, run my own business, and have both parents in situations where they can't live independently. There is only so much I can do and I have my own course to chart in life as well! My time is now. If my mom lives as long as her mom did, I will be 70 when she dies. Am I supposed to throw away my life until I am 70?

Love your post, thank you! Spot on.

"Your parent if psysically fit and with the aid of these life extending wonder drugs will keep going like a freight train while you will be the one who dies first or ends up debilitated"

I'm only 46 and after this experience with my dad and now my mom I wonder what, if any, of these "life extending wonder drugs" I'll be willing to accept when it's my turn. Time will tell. I had my kids late-ish. They are still very young so I want to be a part of as much as I can. However, I REALLY don't want them to have to put their lives on hold to care for me. For now, we save and set up for our retirement in hopes that all is taken care of.

The answer is guilt and pressure from others in the family. Nope they have their own lives to take care of and here you are only 63 and alone( not because I want to be ). So that’s my excuse and I am so sorry I put myself in this miserable situation, your right she will probably out live my usefulness and her mind is fine, she let her body do her in.

For many of us, the operative variables are affordability and honoring our parents' rights and wishes. My MIL is in relatively good physical health for 92, but is frail, has some orthopedic issues, and although she has most of her faculties, is unable to safely manage her medications, doesn't (and shouldn't) drive, is prone to falls, and is fearful, forgetful, and easily confused. She is unwilling to consider any care but ours, and while my husband has medical and financial POA, she is enough in command of herself that she could plausibly refuse placement and/or be disruptive enough to be unwelcome in a less restrictive placement. She could and probably will live 5 or more years.

We are both retired, with fixed incomes and our own aging to plan and save for. She has a modest pension, Medicare, and SS benefits, but we have explored options and there are time limits to her benefits she will likely outlive and medical necessity criteria she likely will not meet. We live in a rural area where little is available.

So, although an assisted living placement would be beneficial for her medically and socially, and for us, especially as my husband is now partially disabled and has his own health problems at 72, it is not feasible.

We wrestled with this issue a couple of years ago when she was abusing medication and experiencing drug induced dementia, but we straightened her out, and here we are. It is frustrating and confining, especially for my husband, who had different plans for his retirement that now will likely not happen, but it's helpful to accept life on life's terms, since that's how it happens.

panda, it’s a good thread, thanks for starting it. Wanted to say I’m sorry for the ‘side story’ about the gambling. :( Hope you’ve worked, or are working, through it okay.

GREAT wondering thank you. BLESS you

Your mother's situation was quite a lot clearer-cut than that of many whose much older parents have much less florid dementia, is the thing; plus your father was conveniently removed from the home for that crucial forced break.

God forbid, I'm not saying you were lucky! It must have been horrendous, and hugs to you. But most families are dealing with a lot of ambiguity and a much more protracted grey area where they don't yet have the authority to take over decisions. It's just not that straightforward.

Panda I absolutely agree with you!!

what I have learned on this site is that people end being full time caregivers for different reasons. Some made promises to their parents that they would never “put them in a home”. Some believe they are morally obligated/required to take care of their aging/ailing parents. Some fell in to it. Some had no idea what they were getting into and are now past the point of no return.

i don’t think anyone is obligated or required to take care of their parents. I think if you can help, you should BUT it should be on YOUR terms. Do what you want to do, what you are comfortable doing and put yourself first!!

When people say they stepped up and became their parents caregiver because they had to, because there was no one else to do it, I think to myself “yes there was. But that’s not the path you chose to take”. There is always the option of AL and nursing homes. For those who can’t self-pay, there is Medicaid. Bottom line, if an elder cannot take care of themselves, there are options. But you have to know what the options are and you have be willing to go that route. Not everyone is willing to go that route. For the reasons I mentioned above. And we must not judge them but try to understand and have empathy.

I supposed i might think differently if I were older and my children were older.....but for now, I really don’t believe that anyone of us HAS to give up our lives to take care of our parents. I don’t. I dislike when people say “it’s your parent. They changed your diaper and fed you”. Yes. Yes they did. But I am not in debt to them over it. There is a BIG difference between raising a child and taking care of an ailing parent. Why should anyone give up their life and make huge sacrifices to take care of their parents? My FIL is at the point where he needs caregivers. He’s got a feeding tube. He can’t take care of himself. His children are in their 30s & early 40s and their (our) children are in elementary school! Why should we sacrifice our lives to take care of him? I know that sounds bad. But really......to become a full time caregiver which is what he needs, someone would have to give up their career and they would miss their children’s soccer games, gymnastics meets, Boy Scout events, etc. There would be no weekend getaways and family vacations. The marriage would suffer because the spouse would be 3rd in line. And probably go resentful. FIL would have to come first. Why should anyone do that to their children? Why put their parent first? Their parent raised (or had their chance to) their kids. Shouldn’t their kids get the same opportunity? For me, my husband and kids come first. I just can’t see sacrificing our lives to take care of our parents. I can’t. I can see us helping on our terms but that’s it.

And for those who are still young enough to find love and start a family, why give that up? Why put careers on hold? For what? And then what? What happens when mom or dad is gone and you are now 50-60 years old, no job, no spouse, no kids. No retirement. And what about physical and mental health??? Who is going to take care of you when the physical toll of caregiving has debilitated you? You never found a significant other or had children because you devoted yourself to taking care of mom and dad. Now they are gone and your quality of life sucks and for what?

The more I think about it, I don’t think I will change my mind about this.

My own personal belief—we all want our parents to be taken care of properly. We want what is best for them. If we can’t take care of them properly, there is nothing wrong with handing them over to those WHO CAN. It’s not wrong. It’s not selfish. Sometimes what is best for them, is what we think is the worst thing for them.

Panda Bear. You got a 100 percent positive from me. I agree completely with your last post. We are all in different stages of this journey.

I think about this, a lot.

My father is in fairly good shape but has more than a little bit of drama. He doesn't have dementia but his eyesight is mostly gone. He also won't do the things he needs to do to be really independent with his vision loss. He simply won't face it.

I also have a job, that while in many ways is a really good job, is also a job that's tearing me apart. I'd be better off without it but that means moving. And, now I have PVC's (extra heart beats) which while not really dangerous, are not things that lower your stress.

The thing is, I know he really can't do it on his own. The moment something goes wrong, and it will, I'll get the phone call. He's been dying <sarcasm> 3 times in the last year and a half. So I get job stress and his stress and I'm pretty close to being out of reserve.

And, comparatively to a lot here, I have it easy and I'll at least get a nice inheritance out of it.

I have no idea how some of you do it. I can't imagine it being anything but like being in prison in some cases. And if it does this to me, what it's doing to those of you who are caring for someone at home with heavy dementia, man, I can't imagine it.

Hi Everyone Because there has already been a quick negative response to my post I would like to clarify that I am only referring to those who know they have reached the end of their caring journey It is not a post saying get rid of those you care for or you just don't want to do it. Anyway, maybe, if that is how you feel in my opinion, that's also OK My post is not meant to demean dedicated carers and family Those people should not see this as a mirror being held up to them. I just wanted to say to all those who are caring and have had it, hate it or are now becoming ill over it and just want to live their life It's OK to say so and act upon it We are not all cut out for the job Releasing yourself and in extension, your own family from the day to day care will probably make you a better and happier person who will find that anger and resentment will be released and you will be able to feel more "caring" and "loving" towards the person in care

Thank you Isthisreallyreal. I’m going to start BP meds tomorrow and a baby aspirin. I do walk my dog an hour a day and pray nothing happens while I’m gone. Thank you for your support

Panda, thanks! I haven't put her on any other lists yet, thinking no one would take my advice, or help, since I won't be managing her.... but maybe they will? Her apt is a rental, she has no car or investments - only her monthly SS - has to go directly on Medicaid; presently she's on some kind of state program that gives her a lot of help in home, but that would stop if/when she goes to a facility. As for the cat; he hates our dog and our other cats, but he's a sweetie with people - everyone that comes by pets and makes over him; he's a Maine Coon, so we waited as long as this partly because she loves him so much.

Pandabear, you have brought up some valid points. I was directed to this website by my local counsel on aging because I was placed in a terrible situation by my dad.

He thought he would move in on my life and take over, regardless of what it cost me, as long as he got what he wanted.

What he didn't consider was maybe I wasn't willing to have my life destroyed because he failed to plan for aging. I have seen some terrible things happen because aged parents and grandparents are going to do it their way,I too do not understand not being able to say no or enough. But my parents were not loving or kind or even around, so to expect to suck my life to prop theirs up wasn't going to happen.

I was referred here to find support and help with placing my dad, he had nothing and made 14 dollars a month to much to receive aid. I was pretty stressed out because I couldn't have someone that actively tried to destroy my life in my home, I found a multitude of different opinions but I did find support, so please don't let anyone run you off because you spoke your heart. It's okay to do that, regardless if others get upset, you will find support for your individual care journey, because I personally know that just because I am not changing diapers doesn't mean I am not providing support and care that impacts my life, it's just on my terms.

I think when we can’t be on call 24/7 anymore , because in my case, it’s all on me. My husband works nights. I can not be responsible for her with her demented behaviors that can easily cause extreme bodily harm. Her last fall resulted from taking 2 garbage bags down icey deck steps in summer shoes. My husband is in the medical field. He said she needs more care than I can do at home. So wound clinic. Nurses coming 3 times a week to dress her arm. It’s too much now. I can not make her not do things that she shouldn’t do. I can’t stay up all night either. Some times my heart pounds. Blood pressure high. She may well out live me. It is time , ASAP for her to have more care. Got to add, I don’t think anyone caring for anybody has to go the 24/7 life , before placement.

Panda Bear. I’m like theperson you wrote about. I’m ready to start taking high blood pressure meds. It used to be almost too low. Not anymore. After my mother having 4 falls in 2 years and her dementia worsening by the month, I completed the application for memory care. My patience with my husband, my daughter, my dog , is lessening. I can’t even stand higher volume on the tv. I try to be as kind as I can to my mother, but she’s driving me crazy. 24/7. For years. It s gotten really bad since September. Now it’s March. Memory Care said there will probably be an opening by June at the latest. I’m very sorry this happened to her. I’m very sorry I can’t deal with it anymore. I’m 58 I want to happy and nice and fun again, not the person I am now. I’ve done all I can for her, soon it will be the professionals job. Slowly , I’m over coming the guilt.

I so agree, Pandabear, but WHEN? I look at my mom and think she is so frail; says she can't do anything (shower, wash hair, wash feet - husband did them yesterday, and it had been awhile! - clean anything, care for cat, use the microwave, get something out of the refrigerator, get up and answer the door; leaves it unlocked all day in an apt building that has bad people and big dogs (danger to cat) in it, has had 9 falls in a year; bad leg injury, but not broken in one, short term memory pretty bad, but not always, and she says it's her pain meds (who knows?). She also has had several accidents on the way to the bathroom; called me to come clean up (bm), but I just can't, so her housekkeeper came and did it. She has quite a few people helping to keep her in her apt since a couple of doctors at the ER told us almost 2 years ago it was time for a NH, but yesterday, after we wrestled her in and out of her wheelchair, up into the van, and down at the doctor's office, one of his nurses watched and said "Are you still living alone?" She was obviously shocked. That makes me think it's maybe past time. She's on the wait list for a nice Lutheran NH an hour away, and has applied to Medicaid (no money, only modest SS) and been denied, pending being admitted to a NH, then has to reapply. I know we're waiting for a crisis, which I really don't want to happen, and she dreads being without her beloved cat, but are we just being ridiculous? She says when the time comes she will go nicely, but is adamant it's not time yet. How does it seem to you?

You have a rather simplistic outlook. It’s not as easy to place a loved one in long-term care as it would seem. A good portion of our posters here have made a promise to their parents to keep them in their homes, where they’ve possibly lived for most of their adult lives. And, a lot of our community here feel obligated, whatever the reason, to bring their loved one into their own homes to live. Granted, it doesn’t always work out. And yes, a lot of us caregivers go down before the ones we’re caring for do.

Posters come to our community to share their feelings of guilt over having placed a loved one. They need validation and reassurance that they’re not terrible people who dumped their people. On some level, they know it was necessary but they look to us to tell them so. To tell them it’s ok, that THEY will be ok. That they aren’t terrible people who “got rid” of their loved one. That’s what we here for and I’d like to think we do a pretty good job helping people come to terms with a parent who may now be more of a child.

Placing a loved one in a facility may bring relief, but seldom does it bring “happiness”.