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PandabearAUS Asked February 2019

Why all the guilt and soul searching?

I see a lot of posts here about parents in their 80’s and 90’s and some pushing 100.


They have Alzheimer’s or another Dementia or Parkinsons etc and their children are trying to look after them while keep them in their home or taking them into their own home. Why? How old are you if your parent is this old? Where is your life? A lot of talk about guilt and not upsetting them. Respecting their wishes or they refuse to go. When my mother was placed in full time care because of Alzheimer’s she was only 65. My father was literally killing himself trying to keep her at home. Life was a nightmare and then he expected me and my brother to help him. He wouldn’t even put her in respite. When he had to have day surgery he thought the nurse would watch her for him but I spoke with her doctor who got a spot for her in respite and while she was there I requested another assessment. That was in October and she was in permanent care in the December.


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. Their generation is living way beyond their actual life expectancy and the body will find ways to shut itself down and if the body is kept going the mind will shut down.


If you have POA and legal guardianship then use it. Let others (whose actual work is to do so) look after them. Why beat yourself up over it. Don’t you have children and grandchildren and friends? Don’t worry what others may think. You won’t go to hell for it and you will become a happier person.


If you or they have the means put your lived one in care, do so.

worriedinCali Mar 2019
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.
PandabearAUS Mar 2019
Totally agree. Yes our parents put a roof over our heads, fed us and cared for us as we ourselves now do. However. That’s their/our job. That’s what they were supposed to do. There’s no merit badge at the end of it
PandabearAUS Feb 2019
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
annemculver Mar 2019
NO ONE is cut out for the job!! We tell most women it’s their job, because working for no wages was women’s lot forever. It’s EVERYONE’S JOB.... or... hand it over to people who do get paid for it. We pay our parents back by caring for OUR children, not giving up our own lives!

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Andy22 Mar 2019
When my partner and I discussed taking in her 92 yo mother, it felt like ‘the right thing to do’. My parents died ‘young’, of cancer, and I was really ok with the idea of showing up in this way for the ‘family’ of my ‘family’. When a close friend of ours heard the plan, and said, “Don’t do it. Just don’t.” I thought, how cynical. I respected that opinion, but I thought, people come first. Stepping up matters. Not only would I want someone to do it for me, but more importantly, ‘this is who I want to be’.

Well, it’s been half a year now. The words of my friend have echoed in my ears, as well as words posted earlier in this thread... often, people don’t know what they have signed on for before it’s too late to back out.
Caring for my MIL is slowly draining the joy out of our happy home, and has rapidly consumed all the emotional energy of my patient and dedicated life partner. Am I sorry? Well, no - as I’m not sure either one of us could have lived with ourselves if we hadn’t at least tried.

BUT - I can say that there is, and will be, a limit to how far we can go with this. Thank god, we agree on that. When her mother becomes more physically impaired, needing nursing care, or is more combative and delusional as her Alzheimer’s progresses, it WILL be time for another level of care. And I will not pretend for a second that that could, or should, happen in our house.

Furthermore, I would not want anyone doing that for me. So many of our parents simply didn’t plan. I will not make that mistake, nor will I leave it to someone else to be the solution, were I to allow my selfishness or bad judgement to lead me to such a predicament.

I used to look at, and very much admire, cultures whose elders are revered - seamlessly incorporated into their families, included and valued in their society, and afforded positions of respect and importance in their later years. I still do. However, I have come to understand that pretending that we can, in this society replicate that in our own houses, when our culture has lost the generational wisdom, and the social infrastructure to sustain it, is simply a fantasy. We no longer live (the vast majority of us, at least) in the small tight knit communities, surrounded by extended family and kin, in an environment which not only allows this to be possible, but supports and values caregiving.

We don’t know how, and have not been enculturated as to how to be these caregivers (as if anyone could sanely do it alone) - but even more importantly, we have lost the knowledge of how to be cared for, to gracefully receive support, while making way for the next generation. The combination is a disaster.

My MIL, and from what I read on this site, so many other parents, move in to a child’s home and expect to rule the roost as they once did - demanding, judging, criticizing, and failing to see their grown children as adults with their own lives, responsibilities, needs and opinions. They know no other way than to become the authority again, wielding power over their ‘child’. But now, they are authority figures struggling to do all but the most basic activities of daily living, and failing at even those. Angry and frustrated, they lash out, or simply send disapproving looks and verbal zingers under the radar, to alleviate their own profound frustration.

Dont get me wrong - I understand why they do... I can’t imaging how frustrating it must be to age in this crazy society of ours; to go from able to feeble, from mentally adept to muddled and confused. We none of us wanted this mess - and yet, here we are, trying to do our best.

And thats where it ends up. Doing our best. It’s important that we not judge, or pre-judge our neighbors, or ourselves, for doing the best we can, whatever that may be. For some, that means ‘sticking it out’ with our LO whatever the cost. For others, it means opting for the preservation of our own families, partnerships, sanity and heath, when it all simply gets to be too much.
BethandDan Mar 2019
You are so insightful. And, you write beautifully. Thank you.
Ahmijoy Feb 2019
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”.
Segoline Feb 2019
I glad you responded. I could not have been civil.
DSS893 Mar 2019
Well, this is just what I needed to hear this morning. Modern medicine has kept the elderly alive waaaaayy beyond their shelf life. Fortunately, my nearly 90 year old mom, who I dearly love, was around 60% mental capacity when, after her 3rd hospital-rehab stint, declared she wanted to live out her days in a facility. It was a miracle! Of course, my out-of-state sibling fought me every step of the way, insisting things weren't really so bad, I was exaggerating, she should remain in her home with me continuing to do all the grunt work I had been doing for the last 16 years. Even though mom lived independently, she did not drive, had many, many, many medical issues literally from head to toe, and at 62, I still work 5 days a week. Started out assisted living, now nursing home, under hospice care, non-ambulatory and in very late stage dementia. Being POA is all about putting aside your personal feelings, emotions and having the guts to do the right thing no matter how much it tortures you or how much a sibling tortures you and tries to heap on the guilt and shame. Mom is well taken care of and I am proud of the due diligence I performed in wrapping up her affairs, selling her home, managing her finances, and scrupulously studying and visiting facilities in a three-county area. It was the hardest thing for me to do, but the best thing for my mother. I have no regrets, no guilt, only peace of mind knowing I did EVERYTHING in my power to keep her safe and comfortable.

Isthisrealyreal Feb 2019
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.
mally1 Feb 2019
"On my terms" is it exactly! Thank you; I guess 25 years of overseeing, helping with moves, buying cars, sharing home, counts, doesn't it? Now I am so over the non compliance, and REALLY don't do paperwork/red tape, wheelchair transfers, and diapers..... someone else's turn.
ANightingale8 Mar 2019
I am only 70 years old with an 80 year old husband with Alzheimer's in a home. The reason he is in a home is because he became aggressive and my family and friends were worrying about my safety. He is well taken care of and receives regular visits.

On another note, I have told my children that when the time comes that I need care, to place me in a home if I can no longer voluntarily go in one. I feel that no one other than nurses, trained for this, can take better care of a person than anyone at home. I don't want any of my children give up their life to take care of me.

When my mom died, my dad told me that he wanted to go in a home. He told me that he didn't want to live alone and didn't want to move in and be a burden to any of his two children. He too stated that a home is where older folks belong. Unfortunately he had a double aneurysm on the day of my mom's funeral and passed away very shortly after that.

My dad always had a clear view on life which I must have inherited.

Just my two cents worth.
ExhaustedPiper Mar 2019
You were lucky to have such an unselfish father.
jfbctc Mar 2019
Once again, I am writing from the patients perspective. I was diagnosed with Early-onset ALZ 3 yrs ago.,as my DW and I were setting up our Estate along with our attorney. My DW and I lived through watching my maternal uncle spend four years dying from his battle with ALZ, and watching him fight saying, nothing was the matter with him. That was almost 15 yrs ago. During that time my wife and I began talking about what we would like for future care, and we were equally onboard with how each other wished to be taken care of.

We had the attorney set up a Living Trust in my DW's name, DPOA, Medical Directives, pour over wills etc. We required our adult children review the Trust and other legal documents and allowed them to ask any questions they wanted to ask. I reaffirmed my wish that when I needed AL or MC, that I wanted to be moved 100 mi from where we live so it was inconvenient for them to visit. My DW and adult children are aware of my wishes, and the fact that I want them to live their own lives to the fullest, and to take care of their own families, and not give Mom any trouble as she goes about living the way she wishes. We've made our wishes well known to our 2 adult children who are ages 22 & 20 with a 12yr old daughter who vaguely knows about my wishes, but her brothers and my DW, will get her up to speed when she is mature enough to completely understand my wishes.. I have one adult son age 38.

Fortunately for us, we listened to our parents advice and have profited from their
wisdom. We have passed these lessons on to our children and taught them about how their responsibilities in life would evolve and their first priority would become their spouses and children, not their parents. Every family is different, we have all been guided by our faith and that is what has made this road so much easier for us.

I've been noting difficulty in completing tasks that were once simply, and begun struggling trying to find everyday words, much more frequently. I am beginning to shed responsibilities as they relate to our taxes, bills, and finances, because I am losing track of things. I am saddened, knowing I won't be 60 until July, and I am now unable to contribute much to our family's welfare.

Make a plan for your family and live by it and include your wishes for how your finances are handled, future healthcare is handled and funeral arrangements. This will be a great gift to all of your family.
ANightingale8 Mar 2019
Your view on things resonates so much with mine as you'll read just below. My husband and I also had all documents in place, and had family discussions, luckily long before he had Alzheimer's, and therefore, things are easier to handle from a legal perspective.
I wish you well, your words hold lots of wisdom.
bettina Mar 2019
I think that so many people who start helping out their parents don't realize how
long and involved the care giving stint can be. It can go on for decades. Many of
us do not have support systems in place to begin with, due to divorce, illness or
due to the demands of care giving itself. Having to care for children, work full time, take care of more than one home, pets, and all the other day to day responsibilities on top of daily care giving is akin to building a house of cards. One card collapses and the whole structure can go down with it. That can be a care giver's illness, a child that is struggling, financial difficulty, etc. The demands of care giving continue on unabated. That's when a lot of folks hit burn out.

A lot of us here were also abused and/or neglected as children. Yet we still love our parents and try to help the best we are able. Often we have rushed in during one crisis that we think will be a single event. A decade later, having helped with one crisis after another we wonder what exactly happened to our life.

Many people put a huge amount of pressure on the willing family member to "step
up" and shoulder a huge burden that, like an ice berg, has most of the time and
effort required hidden from view. When my father goes to the hospital and a "friend" swings by for a 20 minute visit, they suddenly think their contribution is on par with my hours spent with nurses, doctors, case managers, residential staff, administration, etc etc. not to mention the hours spent reassuring and calming down my father. These same folks think it is their place to criticize and add even more pressure. I don't buy it anymore, but nonetheless it is still stressful.

Some of us have parents who are both demanding and very ill. The amount of need can be overwhelming. When we have helped with cheerfulness and gone above and beyond, only to be subjected to criticism and manipulation by our parents, relatives, et al, we start to feel betrayed and resentful. That isn't hate it's a normal reaction to being taken advantage of.

To those of you who are blessed to have good memories, at least one good support person in your life, good health, and enough money to not have to face your own old age destitute, I say good for you. That is wonderful. But please do not presume to think you know us and what is in our hearts. Nor chide us, or not so subtly shame us for feeling tired and burnt out. That is not hate. It is exhaustion and a kind of grief. We are watching our parents die and realizing we will never have the chance to know them nor to experience their love. We are also
grieving the loss of our own lives, the missed events in our children's lives, our
lost connections with friends because we chose out of kindness to help our parent when they were in a grave crisis.

For those of us who have had parents that displayed an all consuming selfishness
throughout their lives, we may have foolishly forgotten this when our parents were genuinely at death's door. We still harbored our childish dream that when they recovered they would finally receive us with love. It is not hate that we are crushed when our immense efforts are met with ingratitude, indifference or criticism.

For those of you who have support, your health, and kind memories you can't even
begin to imagine what it's like for the rest of us. So do us all a favor and let us have a place to vent and learn from other's experiences how to set healthy boundaries and take care of ourselves as well. Many of us are in fact great care givers, but we have been put into high demand care giving roles that are also toxic and without support.

By all means continue to count your blessings, but please have the grace to refrain from continually counting them in front of those of us who have not shared in your good fortune. It should be patently obvious, but a thread devoted to finding a way to help a parent without losing ourselves is not the place to do this
Erinm60 Mar 2019
Amen Bettina. You aced it
Erinm60 Feb 2019
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.
PandabearAUS Feb 2019
It’s nobody’s fault that this has happened. Nobody’s I think you have gone above and beyond. I was only 40 with two children at school full time work a husband and a mortgage. There was no way I was going to stop my life or my families so it was left to me to do the permanent placement Later I found out that my father was keeping her at home because he was gambling away her pension but that’s another story
Ever lost one moment to guilt. It was what it was
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