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I applaud you for your well stated post and commend you for your caring decisions with regard to your loved one.
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Thank you for sharing. My father was a very emotionally and psychologically difficult dementia patient. I’m using the word “patient” for a reason. We never question families who send their family members with cancer to the hospital, but we do question it when we search for higher level care for family with dementia. Dementia is a disease just like cancer. Just like people who suffer from terminal cancer, the options for care are many and varied depending on the needs of the patient. When it came time for dad to move to a memory care facility, we had him help chose the one he liked best. He was more at peace with it because we were able to do this. He still wants to get back to his old “home” on the lake, but the caregivers at his memory care are fantastic! I really can’t complain at all. The hardest part is not being able to see him physically because of Covid. We are doing window visits right now. Even with this type of care, I often feel tired and exhausted! I visit him almost daily (facility is 20 minutes from my home), and often feel guilty when I don’t. Since he’s moved in there, he’s been far less combative and sarcastic with me. I think it’s because I no longer have to respond or deflect questions about driving, push dad to change his briefs (he was incontinent) or help him avoid specific physically dangerous situations that might cause him to fall, which he often resented. We just visit with each other! He’s happier and so am I.
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Most homes are good. I worked 27 years in the nursing home business...yes it is a business...sometimes the concern is more subtle than “abuse “ per se....What I do not see is how we are judged by the very care workers at the memory care facility we trust to take care of our parent.....My mom ..woke up after 6 months of deep dementia, hallucinations and paranoia...she was admitted not able to walk, almost comatose..10 months later she is great...... ..she has Lewy Body..a type of remission can happen......two “workers” recently told her ...”I do not think you belong here”.......what????? A gal that gives her a shower has enough medical knowledge to make that observation and discuss it with an ill 87 yr old? Now mom is struggling to be happy there..she started saying she got locked up by me...she had been content..her disease at any moment can send her into deep dementia and hallucinations!! So....I am having her evaluated for a change to a different facility where the workers hopefully are better educated on Lewy Body..mom is unsafe at home...goes up and down cellar stairs carrying boxes, she moves heavy furniture with a back issue, uses ladders, {uses a walker for balance}, goes down a hill on ice to get the mail, leaves burners on and towels near the stove...she refuses to eat...lost 20# when living alone...she needs 24/7 supervision... THAT is why she can not live at home...no one should judge our decisions...I am sick of people trying to second guess this horrible situation!!
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worriedinCali - Oh I've noticed! That one about tying someone to the tree caught my attention. As noted in the other thread you posted in, the MO is generally the same. I can usually tell it's this clown without even seeing the name. I was initially questioning a different name, but the 2166 gives it away. Now there's a 3rd name being used. I would like to see this one shut down. Never responds if anyone says anything, so likely either ignores or just doesn't read our responses. All 3 profiles still seem to be "active." Initially I thought maybe it was a way around being kicked off the forum, but apparently not. Maybe this one can't remember their own profile name? Whatever the case, it would be nice to get this one gone.

I don't read every posting we get. If the topic isn't something I have any experience with, I usually skip it. As a result, I may not see all the comments this one posts, but those that I do see, ARRRGH! Often I post a reply, but I at least post something so the OP and others aren't turned off by the comments! Bad enough having the home-care-warriors, but this one is really something else!!
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DG, haha I just commented on another post about Riley/Rusty being allowed to use 3 profiles here. I couldn’t remember the 3rd name, it’s lockett2166 as you pointed out and they have a history of controversial responses. They are living in an assisted living and are unhappy over their situation which is conveyed in their responses. Only reason I say any of this is because they have been using 3 profiles to do this and it’s gone unnoticed until now.....
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Wow disgustedtoo I don't think I've come across the person you reference, but then I tend to steer away from threads that become acrimonious or that AgingCare promotes and therefore generate dozens of responses. I have noticed other obvious trolls and a few others that I suspect are not really what they claim to be though.
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I plan to post a comment about the home-care issue (will likely have to split it into two, diarrhea of the fingers!), but there is one person I would like to see shut down.

Riley2166, Lockett2166, Rusty2166 is someone who needs to be banned.

This person has NO clue about dementia, yet spews all kinds of bad advice, sometimes bordering on abuse. Changing screen names doesn't change the MO. The "name" used is a hint (always uses 2166) but the comments always have the same tone/message. One shouldn't tolerate the "bad" behavior by those with dementia, doesn't care that it is the condition causing the behavior, demands that one either rather nastily curtail the behavior, let them have it. or leave them in the bed "they made for themselves." I would love to be able to find and point to one post made some time ago telling the person whose LO was incontinent they should tie the person to a tree in the woods until they learn! Perhaps it was removed by admin. I was horrified that someone would even think this much less suggest it!

This person professes to be some kind of genius, who knows all, sees all, yet not only gives bad advice, but complains bitterly about the AL s/he lives in. This person would better serve him/herself by focusing on his/her own situation and finding a place to live that best suits him/her. Taking some time to learn about and understand dementia better would help as well. But no, this person knows it all and has ALL the answers! Not.

After raving about what a GREAT job s/he did as POA for several "friends", s/he abandoned one who clearly developed dementia. Quite clearly his/her POA experience was limited to helping some people who just needed some minimal help, not helping someone with cognitive issues. That person who was abandoned became somewhat paranoid, "lied" to {name}2166, made accusations or whatever, which are clear signs of dementia. Rather than taking steps to ensure proper care for this person and continuing to act as POA, or ensuring the state takes over, s/he took this behavior personally and dumped him! The whole point to having POA is to be able to manage their health and financial concerns, and when necessary, take steps to ensure their well-being and safety. Nope. I was treated horribly, so I'm dumping the person. Clearly no pangs of guilt or regrets.

Admin, if you read this, consider banning this person. There are very few times when a little advice given is okay. The MANY comments that are NOT okay and often border on abusive suggestions outweigh any benefit from this person's "help."
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Why does it matter if the caregiver is at home or monitoring and participating in care that is provided by a facility?

It doesn’t matter who is doing the care and where it takes place.

It’s a caregiver forum for everyone, home caregiver or those who participate in facility care.

I have seen people trashed for placing their family members in a facility. Others don’t know the individual circumstances and even if the OP explains, they still trash them.

I have seen some people, home caregivers and people who have parents in facilities, lovingly encourage facility care so the poster can receive respite from caregiving and to help the family member receive proper care.

On the flip side, I have seen lovely, warm people who have never cared for a parent in their home reach out and help others that are caring for loved ones at home.

I have seen others who make rude and cold comments to at home caregivers.

It goes both ways. The fact is that no one should shame anyone, no matter what side of the fence they are on.

Some elderly people won’t allow anyone to care for them. Their children hang in limbo.

These people, like Elaine (she recently lost her mom) or Paul in Wales need support too.

Paul’s dad refuses going to a care home. Paul can’t force him to.

Everyone from time to time has become frustrated and rightfully so.

We can stop talking to people who are offensive. Or we can say something and not have any expectations of change.

We can plant seeds but not all seeds grow. People have to create their own change.

Don’t allow anyone to weigh you down. It’s a temporary nuisance.
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Love It!!
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Daughterof1930: Me too; I've thought about deleting my profile a few times, especially recently. Then I think, nah, I'll write my OWN post instead of leaving!

I know that the vast majority of us are deathly afraid to get dementia and face life being cared for by others as a result. I think THIS is what we hear a lot of on the forum: FEAR. Fear comes out as vitriol and hateful words, and lots of false bravado too. Like "Watch me, I'm going to take care of my mother at home even if it KILLS me to PROVE it CAN be done so if God forbid I come down with dementia, my kids can care for ME at home, see?"

My mother lives in MC and gets fine care & quality of life there; it's not the MC that's the problem, it's the DEMENTIA that's the problem! Watching her mind erode and her REALIZATION that her mind is deteriorating that's the problem. This is where the real fear comes from, for me. Ending up like that myself.

I'm afraid of getting dementia too so DH & I have made plans for what to do if such a thing happens to either or both of us. Done and done. Our kids will NOT be burdened with caring for us if we do, either, b/c I've read ENOUGH horror stories about in-home care for demented elders here on AC to know that's NOT what I want, and we do not have sufficient funds or LTC insurance for MC care. I believe it's OUR responsibility NOW to make plans for OUR old age so the burden does NOT fall on our children! WE get to decide what our old age should look like
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Thank you for your words. I’ve almost left the forum several times over the vitriol about nursing homes. My much loved mother lived in one for four years, with really good care, when there was simply no alternative. If there’d have been a way to have her at home our family would have made it happen. But I remain grateful for her care, for the workers who told me that they considered NH’s their life’s work, their calling, and they wouldn’t want to do anything else. Those who try to dole out shame and guilt are heartless and cruel beyond measure
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Excellent post. I have seen plenty of posts shaming a person for not being able to cope with 24/7 care and choosing an AL or NH. I would not have been able to give up my job and take my father in. That would have devastated me financially and physically. And I would have no right to impose that on my children or husband.

As far as the 'you made the choice' comment to those who take in an elder then realize it is more than they can cope with. I have made that comment but normally when I person is angry their siblings will not make the same choice. You can't force others to do as you would, which is why the comment is made.

I agree that every situation is different. Some people are able to take in an elder and successfully care for them. Some people know up front that they are not equipped to do this and that is fine too as long as they find a safe place for the elder. My father would complain that the place we moved him into was 'too nice'. Some people think they can do it and then find out they were in over their head but refuse to make the necessary choices to correct the situation and are angry others won't come to the rescue. (those are the ones who get the 'choices speech'). Every situation is different and often a situation is ever-changing. You may be able to care for them in one stage but not the other. And it is fine to admit you can't do it all.
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From my experience there is the stigma that NH's are places to dump someone off to die and that they are staffed with horrible people who let the residents sit in urine soaked clothes all day.

When choosing the one for my dad I knew there was one he definitely did not want to go to and another highly regarded one that he would. Since I wasn't sure we could get a bed in the preferred NH, I researched all of the nearby homes. Fortunately he got a bed in the preferred NH.

I never had a problem with staff or his level of care. He got on well with the staff too. And just because he was there didn't mean that I stopped participating in his care. I communicated with the staff often. I had a list of who's who & I asked a lot of questions.

In his clear moments dad understood very well the level of care he needed. And he understood what it took to care for someone who had health issues. Years ago he and my mother had taken care of her father who had ALS until they couldn't and he needed more professional care.

I was prepared for backlash from any family or friends. It only came from my oldest sibling about "that place". I shut them down immediately. Even though my siblings loved our father, neither of them raised a hand to help in his care. And I wasn't going to let anyone tell me what was right or wrong. Especially those that did not contribute to his care.

We took care of him at home for as long as we could but we knew our limitations. I certainly commend anyone whose situation allows for home care but I'll not shame anyone who utilizes the services of professional institutions.
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NGE: This statement is PROFOUND: "And it's insidious. I've said it before. It starts out as just one ride to the doctor; just one load of laundry; just one trip to the market; just one run out to the drugstore; just one more meal to prepare - and then a little more and a little more each day until the next thing you know your life is defined not only by someone else's health, but someone else's health that will never, ever improve."

Hopefully some people read this PROFOUND statement and SEE how things get out of control so quickly, how we can become slaves to caregiving, and how things spiral. The famous "JUST" word! Boundaries MUST be set. Everyone MUST pre plan and decide how to care give and how much they will/will not do, and when to cry uncle! And that whatever decision they do make, it's OKAY, no matter who says otherwise!
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Lea,

Thanks for this posting. It’s an important topic.

Properly communicating is key to the success of this forum.

Everyone gets frustrated once in awhile.

NGI,

You are a very compassionate and understanding person. You are so very easy to speak with, and have a gift for hearing others.

I had many hurdles to overcome. I was lost and confused for quite awhile.

As I said, it takes time to process and each of us have our own backgrounds that play into it.

I saw a loving relationship between my mom and her mother and father. I saw a wonderful relationship with my mom and her sister and brother too.

So, I didn’t see a dysfunctional family on mom’s side. My dad’s parents were dead before I was born. He got along with his siblings.

I adored my grandparents, aunts and uncles.

The dysfunction in my family stemmed from my oldest brother’s drug addiction. I had ups and downs within my family, some truly wonderful times and other really disturbing times.

I wish it could have been different, and always had been pleasant. No one has a fairytale life though.

I’ve made peace with it all. I was extremely fortunate to have a great therapist.

If there is a silver lining, and there usually is, right? I can say that I am incredibly grateful for what is good in my life, my husband and daughters, good friends, etc. I don’t take very much for granted.

My MIL contributed so much joy to my life. She died more than 25 years ago, my oldest daughter was 5 years old when she died from non Hodgkin’s lymphoma. She was 68.

In many ways my MIL was the mother that I always desired. She certainly raised an incredible son who is the love of my life.

I try to stop myself if I get stuck on the really sad and confusing parts of my life.

I remind myself of the joyful times that I have had and have now.

I can’t live in the past. I can reflect from time to time but no more than that.

Part of my strength now is knowing when to let go of painful memories and cherish what is important in my life now.

Otherwise, I find myself sinking into depression. I truly feel like anxiety and depression can take years off of our lives.
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I hear you too, Lea. My mom had the money to self pay for respite care; she also had a great LTC policy that would have covered not only placement in a facility, but at home care as well. It was a pricey policy, but she gladly paid it, in case the time came when she might have needed it.

But -and this is a biggie - planning for the future doesn't necessarily equate to executing that plan once the time comes. I know when my mom took that policy, her thought process was more about "if I have a massive stroke." Or if she developed dementia/AZ. But there was never a thought about what she actually ended up with - CHF - and the slow, painful slide downward. Not by her, nor quite frankly, by me. And since she had spent time in hospitals and rehab facilities, I came to realize that her not living at home might have been easier in some ways, but harder in others. Since she was closest to me physically, it fell on me to be the one to visit her daily, try and coordinate with the medical staff, etc. And as I said, just to run the gauntlet of paperwork to get her into a facility for respite was a royal pain.

I think there are a lot of people out there like me...LO's not really bad enough to need placement in a facility, but bad enough that you start to have to plan your life around their care needs. And it's insidious. I've said it before. It starts out as just one ride to the doctor; just one load of laundry; just one trip to the market; just one run out to the drugstore; just one more meal to prepare - and then a little more and a little more each day until the next thing you know your life is defined not only by someone else's health, but someone else's health that will never, ever improve.

NHWM - you did yeoman's work for your mom; you lasted way longer than I think I would have! I'm so sorry that you have had struggles, but I am glad that you're here; your stories show that there is hope in what often feels like a hopeless situation.
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There are people who post here that are clearly in some kind of codependent dance with an abusive care recipient, IMO it's not always helpful to commiserate and give positive affirmation to what is essentially self destructive or dangerous behaviour.
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NGI,

A million thanks for saying what you did about telling people, “Your choice! So it’s your fault!” That used to hurt like h3ll when I read that.

It was rubbing salt in the wound! It’s absolutely counterproductive to essentially say these things.

Everyone has individual circumstances!

No one really knows what they are in for.

There is no way that people can be prepared for what lies ahead of us, especially if we have extreme extenuating circumstances like many of us have had. So yeah, there’s always two sides.

One side is not better than the other. It’s finding what works or doesn’t work for each person in their setting.

All of us come to this site broken and need comfort and compassion, not a lecture or an interrogation from others.
That comes off as quite smug!

It is more beneficial to meet the person where they are instead of automatically questioning why or how they got there, and without judgment!

Follow their lead. It’s not easy to get everything out in a short time. It’s a process.

Nothing gets solved overnight. People need time to process.

Start helping by gently planting seeds. Let suggestions take root. Solutions don’t flourish immediately. As caregivers we are overwhelmed and simply can’t take it all in at once. It’s overload. I love this forum but I felt this at times.

Oh my gosh, my first session with my therapist, all I could do was cry! I was handed a box of tissue and told that I was safe in their office. How lovely. I will never forget that I wasn’t pressured and told to speak whenever I was ready.
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Lea,

Some people are oblivious to various points of view and they may change their narrow mindedness if they wish to grow. They don’t know that they don’t know. Those people I give the benefit of the doubt, and deserve patience and understanding.

Arrogance is something totally different.

These people are often close minded individuals that don’t seem to be interested in another person’s experiences. They feel as though they are always right. Everyone else is wrong.

If someone disagrees they usually come back harder or can’t be bothered.

You won’t convince them so why waste your time and energy.

Unfortunately, people will continue to be rude and not care if it is insulting to others.

They feel it, so they say it. Who knows exactly why?

They may be hurting horribly and have never had someone explain things in a thoughtful way. They may be in need of therapy.

They may believe that they have as much of a right as anyone else to speak about their opinion and wish to express themselves even if they are indeed rude.

They may be jealous that they are full time caregivers at home and don’t realize that everyone is a caregiver whether a parent is in a facility or not.

So they decide to lash out at others whom they feel are on easy street.

There is no easy street in caregiving no matter which route is taken.

It is a huge step when someone recognizes their own flaws.

They may not desire to hold themselves accountable for any of their actions, therefore isolating themselves. It’s their loss.

People at that point are making choices that not only are hurtful to others but to themselves as well. They don’t wish to be educated.

No one respects their opinions. Just like you see through them, others do too.

If they sway others to their side, so what? Those people aren’t helpful either. Misery loves company! They deserve each other.
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NGE: Hearing 'well it's your own fault' regarding any decision isn't helpful. I think we're all struggling with ALL of our decisions, and second guessing ourselves as it is....which is why reading some of the hateful comments hurts as bad as it does. Then to hear 'well duh, it's your own fault ANYWAY' just makes a bad situation that much worse, I'm with you.

Placing someone isn't always 'the right answer' and keeping someone at home isn't always 'the right answer' either. Whatever works for YOU is fine and should be supported by whoever is leaving a comment. I've never had a problem placing my folks b/c they had the $$$$ to private pay (but I never had to place them for respite care). When that runs out & I apply for Medicaid for mom, I'm sure the papers I've already downloaded will be a bunch of fun to fill out, which is why I will hire an agency to help me (for a fee) if we get to that point. Never easy, any of this.

BarbB: I think people just love to bash us for everything we do, no matter what. "As if" all moms have the ability to stay home and care for their children; that would be nice, in a perfect world with a money tree in the yard.
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"lealonnie1,"

Although I had a fairly sheltered upbringing, I'm certainly not ignorant at all the "horrifying" things that take place in abusive and/or narcissistic types of home environments. And yet, if I actually read a true story of such, I'm still shocked and find it extremely disturbing.

You having experienced it yourself growing up, were wise not to allow it into your own home as an adult. Most of the time, mistakes are repeated over and over and over again into future generations within the family which does nothing but create a vicious cycle. Your decision and others who have followed suit "broke" that cycle and that will prove better for everyone. Be proud for having the strength and courage to stop a very unhealthy situation in its tracks!
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What I hate seeing is when someone has their LO at home and comes here to vent, or looking for practical suggestions/solutions and is then told, in sum and substance "well, your problems are your own fault, because you are choosing to keep your LO at home! You should just put them into a facility." Like it's a hotel you can just call and make reservations.

When I put my mom in respite care on 2019, I had to jump through all kinds of hoops just to get the screening to be able to put my mom in the facility... here I was, trying to do the "right" thing and keep mom safe while I went away, and it was such a process... and that was just for private pay respite care. I can see why people throw up their hands when it comes to all of the paperwork to get any sort of financial assistance, placement, etc. It's a quagmire that you have to slog through either way you look at it.

Either choice has it's good points and it's bad points. It's just a matter of what works best for everyone - caregiver and person being cared for alike. And what decisions worked for me might not work for anyone else, I get that - but I don't need to hear "well, your problems are your own fault because you chose to keep LO home with you." That's not helpful or supportive, either.
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👏👏👏👏
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sjplegacy....there is plenty of criticism here on these boards; we have people telling others ALL the time how 'please don't put your loved one in care' because they'll be lonely and unloved and scared, yada yada. We had someone yesterday calling herself an MSW (but referring to it as a 'medical social worker') saying  "And for goodness sake...don’t put her in a nursing home."

We have the gentleman who's beside himself after placing his violent wife in a Memory Care & coming here for support only to be told to take his wife home immediately b/c it's his duty to care for her in spite of her physically attacking him......in fact, his DAUGHTER came onto the thread to ask people to stop making her father so upset.

Those of us, like you & I & many others, chose to place our wife/parents in MC precisely BECAUSE we love them, not b/c we're tossing them away, like one poster wrote yesterday:

"We as a society throw our elders away in these places and hope someone else will take care of them."

It's not that way at ALL. And this type of talk is rampant here.

"To each their own" doesn't apply on a public forum where support is being sought.

Colleen: A punch in the gut indeed. Walk a mile in our shoes FIRST!
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I see what you mean now, Lealonnie. I thought you meant on the Forum itself, but you mean in real life as well. Lordy, that is always amazing to me; these days--and maybe social media has created this--people just love to get out there and judge others. It is so hurtful to decent people doing their best. I suspect it will never change. This is their personalities and they do it about more than just our subject. They just enjoy going around angry and stamping their collective feet. I pay them very little mind. But I can understand some people being very hurt indeed.
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Hmmmm! I don't recall reading any hate speech from those who choose to keep their LOs at home vs. those of us who have reached our care limits as you mention in para 2. Many of the examples you site are early dementia symptoms that may not require facility placement yet, and may still be manageable at home. I'm guessing many of the care-at-home proponents think we're throwing in the towel and casting our LOs away when we choose to place them in a care facility, when in reality it's a confirmation of our love, an extension of our caregiving and an admission that we can do no more. To some of the facility “bashers” they may feel it is their responsibility, that they can afford home modifications, or even that the Lord “won't give them more than they can handle”. I can't fault them for that, to each his own. Then others consider their caregiving, regardless of how difficult it may be, to be a fulfillment of their own lives. I can't knock that either. We all have our own cross to bear when it comes to dementia caregiving. We decide for ourselves how heavy the cross is, we can't decide for others.

I certainly agree with your first para, lealonnie, and it's the reason I placed my wife in better care. To those caregivers who write that they are at wits end, I think this forum offers them good faith suggestions to specific problems. They're free to decline them. Sometimes tough love is misconstrued as criticism.
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You, it's sort of like daycare vs stay at home moms. You see plenty of bashing of parents with kids in daycare and very little bashing of stay at home moms.

Why do I think there is a strain of misogyny in both of these themes?

Because there is.
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I agree. There are good and bad senior homes. When someone needs that kind of care, the family should try to find one that's a good fit for their loved one.

When someone is taking care of a loved one in their own home, it might be fine at first, but things get harder. The elder declines, gets more irritable. The son/daughter gets burnt out and wants to strangle the person.
A professional caregiver can help. There are good and bad ones also.
It's important to find a good one.

If the elder is hoarding, puting garbage on the floor, falling, inactive and bored, lonely etc, it's a good idea to look into an assisted living or memory care that has good care, activities, and socialization and is nice and clean.
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The bashers didn’t live with me when having my mother with dementia caused me to become bedridden from the stress. They certainly did not see the HUGE stress her living here put on my marriage.
They didn’t see how she would leave the house when I attempted to take a nap. I have two autoimmune diseases, and HAVE to sleep during the day.
They did not see how my mother was ugly to my grandson, who, at 18 months old, was just curious, and would just stand next to her.
They did not see how my mother would interrupt my husband while he was working from home. He is forced to work from here because of the pandemic. No amount of asking or signs on the door would deter her.

How dare they criticize my much prayed over decision, when they didn’t live here. It’s like a punch in the guts when I read their posts. And, it certainly doesn’t help a new member to this forum.
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Nobodygetsit.........I know, right? I grew up in a house with a lot of ugliness going on inside and that's when I myself vowed to never take MY mother into my home; not to God forbid have a repeat performance of what went on with her mother. Then I witnessed neglect with my cousin ignoring her mother (my mother's sister) in her home and realized, hey, who oversees family who's caring for elders????? Nobody. It's sad and more than likely, A LOT of bad stuff does go on.

golden......me too. Once was more than enough. I'm no martyr, either, and making the decision long ago was the right one, for you and for me.
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