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

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 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.

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.

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

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????

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!!

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).

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.

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?

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.