Advice for caregivers usually requires we are the only ones who need to have herculean calm and understanding. Any idea why?

I totally agree.
I have been a nurse a number of years caring for others and in this situation it was easier to walk away and have a break from constant caring.
I have found myself caring for family members and felt that my feelings or needs are not taken into consideration and that I have to remain 'the nurse' at all times. I find this exhausting and sometimes worry why do I think just about others feelings when they don't think about mine.
I do think that as long as someone is doing the caring then others in the family just don't even think about the stress and weariness that can go with it.
To speak up can cause arguments as nobody wants to really discuss the elephant in the room.

'I was just reading an article about how to discuss elderly caregiving with siblings.'

They're pretty much all the same. Usually about 6 to 10 bullet points of bullying you into enabling do nothing siblings. What these authors will *never* do, is admit they really don't have an answer - only that your could do better, if only you would subscribe to 'their wisdom'.

Often in situations like ours, appeasement is the only pragmatic short term answer in a crisis, and once the dust settles, honorable people won't take advantage of that appeasement. But, dishonorable people will. You find out people's true colors - for some lucky ones out there, it's a reassuring experience. But for others, less so.

Why does our society promote this? It's pretty simple. Because slacker siblings outnumber caregiving siblings in society as a whole, just as they do in individual families. The status quo works just fine, for the majority. And if you're part of the minority, well 'sucks to be you - just toughen up a bit, will you, you're making our perfect lives a bit uncomfortable. You're working for the 'greater good', you're just not part of it'

(and useless articles aren't limited to caregiving, the internet, and magazines prior to that have long had articles full of useless non-solution solutions to just about every topic)

I love this post! Thank you for writing it and you're absolutely right. I was an in-home caregiver as employement for 25 years andam currently the sole caregiver to my mother who I've always had a strained and dysfunctional relationship at best with.
I think I have heard every so-called "expert" and "professional" and read all of their works on dealing with family members and approaching care with the elderly, disabled, demented, etc... and can say with confidence that they 99.9% full of sh*t.

Here's the best piece of advice anyone can give someone who is a caregiver or planning on becoming one, It's from me and it comes from 25 years of experience.

_ Caregiving only works if it's done on the caregiver's terms. Not the person receiving the care.
_ Be plain and direct in your speech when dealing with the person you're caring for and their family. Be this way with your own too. False cheerfulness helps nothing and no one. Least of all you or the person you're caring for. Caregiving is mentally and physically exhausting work. Don't make it harder on yourself by trying to be a ray of sunshine for everyone. Caregiver burnout will hit you hard and fast if you do.
_Don't be obedient to the demeted elder like so many people are. They can't call the shots and make decisions anymore
_DO NOT tolerate abuse from the person you're caring for (even if they have dementia) or from their family (even if it's your own)
_Give it as good as you as you get it. Believe me it's fine if you have to put a person in their place if it's the only way to get done what they need done for their own good.
_Doing what a person NEEDS is often something very different than what the person WANTS. Have the wisdom to know the difference.
_No one is a failure or a bad person if they have to place a loved one in managed care. It's okay if a person's needs exceed what you can provide for them to place them. None of this nonsense about promising to keep someone at home, and f--- the guilt and bullcrap because NO ONE should ever ask this of someone they claim to love.
_Save some caregiving for yourself. Always remember that your health and what you need or want are no less important than the person you're caring for. Never forget this and many people do.

I actually went so far as to contact an expert named Teepa Snow. She has many techniques for dealing with dementia sufferers. I did what she recommened for a senior dementia care client who was filthy, sitting in her own sh*t, and refusing to get cleaned up. She bit me. So these experts really aren't so expert. In caregiving you learn how to do what works in the moment.

Yes! This!

Yesterday after a long xmas visit with mom I was sitting in my car ranting into my phone video ( it’s a Blow-Off-Steam-Thing I do some post-visits ) about nominating myself for an Oscar for my performance.

I get being calm and and mostly cheerful with dementia, I really do. It works. But that still doesn’t mean we have to put up with bad behavior. There was one new man in mom’s MC who was disrupting everyone’s meal by cursing and yelling and being a jerk. Was his brain broken, sure. Staff walked over and were calm and talked to him and also pleasantly and FIRMLY told him his meal was coming. Took a few tries but he calmed down. He did not get to be the king of the cafeteria, they were in charge.

I could go on and on about this topic but suffice it to say after dealing with mom for YEARS my patience for any crap is bone thin. And I had an epiphany a while back - Read a self help article, and writer get their view numbers up and can feel like they’ve helped other people. So it really is a self-help article - for the author! How thoughtful of us!

I’m sure we could write a parody caregiving article that would be even better. It has to include a good diet, drinking lots of water, exercise, reducing stress ( HAHA ) ‘asking for help’, taking time for ‘self care’, and let’s not forget journaling because journals are magic ( Okay nothing against journaling but seriously who has time to do it properly ) To this I’ll add a shot of whisky and an Oscar made out of chocolate because heaven knows we need chocolate after being exposed to this nonsense.

Thanks for the opportunity to rant again and take care in whatever way you see fit!!

We're not only Mother Teresa, we're Superwoman (or man, or who-knows-what gender according to political belief), and we're expected to walk on water when necessary. You know, just tripping so lightly over the rolling waves while looking for the five rolls of toilet paper our loved one has hidden since yesterday, and hoping the waves aren't the loved one's urine following us out of the bathroom. Organizations that should know better, such as AARP, various other media outlets, and medical practices, keep propagandizing the caregiver experience. Why? Because God and our great-granny would want us to do this for our loved ones. Because Jesus is smiling as we scrape every wound, rinse every bedpan, and listen to every repeated sentence every repeated sentence every repeated sentence until we want to hit our heads against the wall in utter frustration about what our lives and our loved ones have become.

We are treated to many inspiring articles and other media blather about the joy of caregiving. How the writer and her husband were devastated by the diagnosis of his dementia but in the ten years after that, they traveled the world doing everything on their bucket list, returning to their Manhattan apartment only briefly to pick up clean designer clothes, and taking photos to commemorate their journey. AND - wait for it - by the time he's drooling and unable to recognize her, she realizes that their love has never been stronger than it is now, and it was an uplifting experience for both of them and then he dies gagging on his own saliva but she wouldn't change a thing. Realistically, it isn't like this for most. In fact, much of it is probably fiction and she got paid big bucks to write it so that we can all be encouraged that "Hey, this isn't so bad! You've never loved your spouse more than when you sat on that wall in Barcelona with your arm around him to conceal the bulge from his ostomy bag, which burst on the plane ride home."

Revolt and tell it like it is. Don't spare the details. I recently participated in a caregiver survey sponsored by my medical group. The interviewer seemed grateful for my understanding of our situation and for my responses, which were truthful.

Nothing is served by following the lame advice we are given. All that will do is land your mind in a state of cognitive dissonance, a mental issue that doesn't make for the best caregiving. Being honest doesn't mean complaining all the time. It means accepting what is and not sugarcoating reality in order to make other people feel better.

I would say the person writing this article has never cared for someone long term. Its all clinical. I love what Burnt wrote and have saved it. You CAN be firm and loving. My SIL got picked for Best Teacher award. She demands respect from her students but she also gives it back. She is firm and a no nonsense person but loving. Students love her. People love her.

I remember something said long time ago. When a person raises their voice to you, you lower yours then they have to stop to hear what you are saying. I think you can get your point across without showing anger. My daughter says "turn it around on them". Such as: a family member criticizes you for something you are doing or not doing for the one your caring for. You say calmly but firmly "If you think your way is better, then go for it" They will usually back down.

People have no idea what its like to have to "be on ur toes" 24/7. That caring for an adult with Dementia is like caring for a toddler. My Mom was easy but I was getting up in the middle of the night because at 3pm in the morning she thought it was time to get up. You really don't sleep because you always listening for her. I could be doing something in the kitchen, where she could see me, and she would ask for nothing until...I finally got to sit down. The first night she was in the AL, I slept thru the night.

We are a "Me" society. The "Me" people are perfectly happy when someone else picks up the reins. They are now off the hook and go on their merry way, and put blinders on. Always suggesting but never doing.

That article was probably written by someone who clearly has no idea or personal experience actually doing the work themselves - how easy is it to just write an article subjectively. Advise and instructions from that mindless writer is just a formula for a caregiver to feel worse and fall deeper into a black hole - only to feel more alone.

On top of what each caregiver does and the agony of what they're going thru, they're also required to be cheerful and put on a smiling face as if their feelings don't matter? It's like not even being allowed to be human - anyone could clearly break under those conditions.

I think we should send this post and thread directly to the clueless writer of this article - so she may learn a thing or two....because she may need the "reality check" some day, if she is ever in a position of taking care of someone herself.

Can I get an AMEN!!!??!!!??

Trouble is, we often wind up getting advice from people without one IOTA of firsthand experience in the area they're giving advice on! I've gotten advice on child rearing from childless people, eldercare advice from people with young healthy parents, and so on and so forth.

Whenever someone posts here with an issue, I remind them that their loved one is not the only important person to look after or to take into consideration when making decisions. We have to take care of OURSELVES here too, otherwise we'll be dead and buried and then what becomes of the loved one we were so worried about killing ourselves for 24/7?

So…
“How to discuss elderly caregiving with siblings..being calm, making sure they are not offended, put on the defense, you don't say anything upsetting, etc”. Probably fine the first time conversation. The next time is when you say no to whatever you are doing, and they then get a chance to deal by themselves with the alternatives. No-one can force either of you to do the hard yards.

“When dealing with the LO you may be caring for, ...whatever you do, don't upset THEM”. Possibly true if telling them makes no impact. The next time is again when you look for alternatives. Perhaps along Burnt’s lines, perhaps about alternative care, perhaps you just ignore the upset if you are paid enough.

Part of the problem is there are too many wanna-be Mother Teresa (who lost my respect when she went to Ireland to oppose abortion rights legislation, also without having experience of an unwanted pregnancy).

Thank you so much for saying all of this “out loud”! I feel exactly the same way. It’s infuriating. Yesterday I was googling “caregiver burnout,” and every single article/video had advice like “Practice self care—even just 10 or 15 minutes each day.” WTH???? I’ve given my soul to my LO for nearly eight years, and now in her dementia she accuses me daily of all kinds of horrible things. I’m dying inside. But washing my hair or clipping my toenails or reading a book for 10 minutes is supposed to give me the strength I need to carry on for the next umpteen years????

Every situation is different and you have to do what works for you. 20 minutes of calming self care is not going to negate 23 hours and 40 minutes of chaos. Speaking calmly with someone having a tantrum may or may not work. My father was not nasty just extremely needy but there were times he would throw a mini tantrum if he didn't get his way. Bonus points for declaring "I am your FATHER". Saying that to a 50 year old woman who is self sufficient meant nothing. With my father I found that yelling louder than he was made him back downright away. His mother was very domineering and I think he was afraid of domineering women (my mother was very even tempered).

There is NO law requiring family caregiver to disclose details of mother or fathers care to anyone else unless specifically mentioned to do so in a Living Will. This might actually be a medical privacy violation.

Caregivers are often creating trouble for themselves and the elderly parent they care for when they, in good faith and with respext for other family, feel they must communicate about their elderly parents. This is not true nor healthy. It leads to “too many cooks in the kitchen.” And more stress for the local caregiver.

If family wants to know about their love one, they have a duty to come by and see, to call for their elderly parent, not for you, to engage and socialize with their love one, to make routine positive acts to their elderly parent. They need to speak to their parent not the caregiver if it’s family.

obviously this does NOT apply if the caregiver is non-family paid. However, if the caregiver is hired or paid by the family to care for their elderly parents, the caregiver still does NOT have a duty to report anything to family and family who paid them, because the caregivers duty is to the patient- the elderly parent not the family.

Caregivers MUST permit access to the non-caregiver family members to their elderly parent telephonically, give mail from non-caregiver family, let them visit during same hours a hospital would so as not to interfere with sleeping of elderly person.

This means give cards, gifts, letters, calls, and let family and friend of the elderly person visit unless a threat to the patients well being, safety, health physically or psychologically.

That is all very different then volunteering info about the elderly person to family and friends. You’re duty is not to them. How do you know the elderly person wants you to tell them how bad they are. They may be humiliated by what caregivers disclose to others. It’s not what you think family should need yo hear but what the elderly person wants them to hear or what is best for elderly parents.

Giving non-caregiving family info about their parents gives them non-caregivers power to object, criticize, speak unkindly to you, create drama that can be considered elder abuse psychologically against the patient and you as the caregiver. Sharing info may create psychological burdens for you and the patient. So don’t do it unless required by law or express permission of elderly person, or for their welfare.

Stop giving other family this power. Caregivers’ only duty is to the elderly person and NOT to any family who fail to have a relationship with their parent, who fail to call for the elderly person, fail to send a card if the elderly person can no longer use e-mail.

Caregivers owe nothing to other family except access to their elderly parent to see them, speak with them, love them so the elderly parent has the joy of hearing, seeing, their other family.

Caregivers by nature are kind and feel a duty to inform family about their elderly parent. Stop this. If the elderly parent can speak, put he or she on the phone instead of you disclosing their medical info, decline, and othet personal info on patient. The non-caregivers are never appreciative as much as they should. So caregivers invent problems and stress for themselves and the elderly parent by sharing or over sharing to clearly non-interested family.

Eception is if there was a document signed by patent while of sound mind indicating to update non-caregivers about their medical and non-medical status, decline, and more.

Make your life easier caregivers and stop feeling you have a need to share everything with those who don’t care enough to call, come by and speak with their parent. Share everything with elderly person’s medical doctors only. And get socialization for your parent online. Show them funny viseos like pet videos or pretty soft music on low. Bring in a wild flower just to see. The more you positively engage senses of your elderly patient, the happier they will be

Thank you for this!!!

After 16 years of caring for my 95 yo entitled mother in one form or fashion - the past 5 years in my home, I've become an angry, resentful daughter.

I was never particularly close to my mother, for various reasons, but now the fragile relationship has become toxic.

And all that crap about "well she cared for you when you were little..." is ridiculous. I cared for my children and loved it - but I'll never ask them to stop their lives to care for me - I hope I'm long dead before I need anyone's help.

And my mother didn't really care for me or my twin brother - I don't think she even held us for the first 2 weeks. My father took a leave of absence and my grandmother moved in to care for us the first 3 months of our lives while my mother lay in the bed. Then she went back to work as soon as she could and my grandmother kept us during the day.

I agree with Burnt that no one should ask someone they love to promise care for the rest of their lives, but my mother did and because I was a pleaser, I promised her.

Now here I am in dementia hell. This is no life.

When people ask me "how is your mother?" I always say with a tone of bitterness, "she's just fine - wonderful". Want to know how I am? It can't end fast enough and I am no longer apologizing for feeling that way.

Amen! It is hard for people to just say we are human with our own needs. All this advice about being Mother Teresa just causes guilt in the midst of our problems. We can try not to yell and scream but it happens. Best advice is to find some people who understand YOU.

Psssh. I will cry like a baby (or yell) if my mom is being painful to me. If i didn't I wouldn't be recognizable to her, I dont think <3.

I just dont go the full arrr rarrghh etc. Cause that's pointless, basically. But yeah. If I don't act like me how is she going to recognize me?

I am an only and am so glad decisions do not have to be made by committee.

As dementia poked holes in my mother’s filter, I found myself reliving very old hurts. Which got me thinking, overthinking, and hyper-analyzing.

I agree that it’s bovine excrement to say that caregivers must be certain to stay calm, upbeat, optimistic, inoffensive, mindful, and all those other adjectives of emotional suppression. Seems to me a lot of us got guilted into the role which is so often the result of being conditioned to feel guilt at every turn. Which is actually shame. It follows years of being taught that our own feelings don’t matter and our value is based on what we can do for others.

Nobody in their right mind would expect their child to give up a partner, children, friends, career, future earnings, health and hobbies to be at their beck and call 24/7. And yet here we are, having been conditioned to accept our fates. So piling on the expectation that we’ll put everyone else’s feelings ahead of our own isn’t much of a stretch now, is it?

Here is my understanding: every advice is purpose oriented. Caregiving can be divided into two categories, one is to care for LO and another one is for somebody else (paid-job).

We can focus on the former. Generally speaking, it's assumed that you DO care about your LOs feelings/relationship and physical needs, as well as your own needs. Further more, your LO's feelings may in tern greatly impact your feelings too, currently and in a long run.

Therefore, the purpose of the advice (stay calm, optimistic, inoffensive etc.) made for this category of caregivers is for getting better results without making the situation worse otherwise.

So it's not the "advices" to blame, it's HOW to apply realistically.

Ann,

I love your posting and insightful message!

Since you brought up Mother Teresa, I encourage you to listen to, The Turning: The Sisters who left. It’s an excellent podcast that will blow your mind about Mother Teresa and I am speaking as a person who was christened as a tiny baby in the Catholic faith and attended Catholic schools.

Mother Teresa didn’t do caregiving all alone. She had the ‘Missionaries of Charity’ to help her. There were young women from all over the world who joined her order of nuns.

I don’t feel like the suffering people that she cared for received the best care either. She would tell them that they were ‘fortunate’ to be suffering like ‘Jesus’ did on the cross. She believed this was a message of encouragement to them about ‘being Christlike.’ How awful!

The only meds that they were given was aspirin. Sounds pretty miserable to me. When she was criticized by medical professionals that these suffering people would receive better care in a hospital, she would ignore them.

Yet when Mother Teresa was dying herself, she had proper medical attention from a hospital staff. I find it interesting how she chose not to suffer like ‘Jesus’ did on the cross.

As I said, I was raised Catholic. My mother was christened at the beautiful St. Louis Cathedral here in New Orleans and she was devout in her faith, but she was extremely grateful for hospice that allowed her to die without pain and with dignity.

I certainly do not mean for my post to be offensive to Catholics or any other Christians. There are many beautiful teachings within churches but I personally find that it is best to use common sense and follow our own beliefs and instincts.

There were times when I felt completely invisible when I was a caregiver. That’s because people’s empathy naturally gravitate towards the person that is being cared for.

Not only do we become invisible to others but sometimes even with ourselves. Caregivers often lose their own identity.

It took many hours in therapy for me to gain a healthy perspective again. I had a wonderful therapist that listened to my feelings and then helped me to understand how delusional my thinking had become.

It took awhile for me to find my bearings again. It’s a similar experience to people who have escaped a cult. If caregiving goes on as long as it did for me then deprogramming is needed!

Everyone absolutely needs a healthy balance in life or things end up in a dangerous downward spiral.

Nowhere is it written that a caregiver is a family therapist or peacekeeper or a good listener. In my book whoever does the job calls the shots. There is no need to invite someone else to hijack your story. No one gets to vote with their mouth. I get to tell my own caregiving story. There is always a choice. It goes how I choose. It is as long as I make it. It ends when I say it ends. End of story, literally.

I haven’t been beaten down enough yet to throw myself 100% on the caregiving altar which would mean moving back into my childhood home to care for two selfish 94 year olds who buried their heads in the sand about financing their end of life care. I’m still doing what I can every other month but I see the handwriting on the wall because they are running out of money. I doubt they will be eligible for Medicaid because of the look back.

if I have to move back they will be getting an angry resentful caregiver who has compassion fatigue.

Even here, we see advice about us being all sweetness and light and giving them flowers and playing music.

This kind of advice usually comes from someone who has NEVER dealt with a Loved One with ANGRY, Anxiety-Ridden Dementia.

Their advice DOES NOT APPLY, and won’t help.

Can you tell that I’m cranky about caregiving, today?

I have to say how refreshing this thread is. Thank you all for being so real. I don't feel as much like scum now.

Totally share this frustration with you . We lost my mom 10 years ago to frontal lobe dementia and then about 3 years after that my father started having TIA’s which lead to dementia it was a nightmare I had to become the head of the house in my late 20s and handle the bills and my dads medical needs I have two older brothers who were pretty much non existent for this entire thing and I tried for a very very long time for the sake of my father to make sure that we saw them for holidays and I was always updating them on my dad’s condition and then was told by one brother continually well I would like to be involved and help but I’m just very overwhelmed and busy with work that made me feel so angry because I didn’t have a choice I I didn’t have the same luxury as him to just drop a line and leave meanwhile seeing on social media him traveling to see friends (mind you this person has a masters in social work and is obviously very knowledgeable about mental health since they handle the suicide hotline as well as many other mental health hotlines that handle resources for people .I told him through tears so many times I need help it’s too much )I had to make so many changes and sacrifices to take care of my dad I gave up dancing which was my lifeline I was the last kid living at home I’m the youngest I eventually had to put my dad in a nursing home as I can’t do it by myself I was drowning I had a nurse at home who was fantastic and I was still drowning my mental health was in total disarray now I go to see him as often as I can to make sure that everything is getting done in the nursing home and that he’s comfortable while my two brothers have stopped calling him never did to begin with and never go to see him also never really did to begin with . Recently my one of my brother who works in mental health has told me that he needs to move on alone because I don’t appreciate anything he does …… which is nothing he does nothing I take dad to appointments I talk with the nursing home I maintain those relationships he’s a narcissist the gaslighting in that conversation was so off the wall it was almost comical. I have come to the point that I have decided to stop filling them in on dad because they seem to not care which is so hurtful to me and I have stopped trying to get them to come around obviously one of them doesn’t want to come around anyway . Their is peace in this decision also grief grief for just wanting someone in my immediate family to grief with that our father has this illness but I have a wonderful husband who has picked up the pieces so many times and continues to everyday . Wishing everyone peace 💛

You sum it up oh so well. How about the “…hire someone…” when we cannot even come close to affording it?

My 90 yo dad has begun to get very demanding. You know, the “I’m gonna die so gimme right now” attitude.

I have given both my mom and my sister the advice that I’ve heard here several times. It is, for example, ridiculous that my mother at 86 is changing my dads diaper and assisting him in the shower, and I’ve told them they need help, but as long as they won’t hear of it, it will not happen.