I was just reading an article about how to discuss elderly caregiving with siblings. The first lines were all about being calm, making sure they are not offended, put on the defense, you don't say anything upsetting, etc. Usually the same advice when dealing with the LO you may be caring for. You may be crying inside (and even on the outside!) but, whatever you do, don't upset THEM.
Did we sign up to be Mother Teresa?
Who is out there thinking caregivers have got to be the only level-headed ones in their universe? Everyone around us can be irrational, mean, selfish, and yet we need to remain calm, cheerful, think through every sentence before uttering it, etc.
Somehow, we cease to be human like everyone else. Or at least are not expected to be human, we're discouraged from being emotional or being anything but sweetness and light in everyone else's life. I'm not kidding when I say nearly every article I've read about caregiving makes this point.
WE must be the only adults in the room at all times. WHO is coming up with this infuriating advice? It's like being a Stepford Wife, lol
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.
I've got news for your father and every other living thing in Creation. The second life begins that ticket is stamped for a return trip. Which is to say everyone and everything is dying.
I do not tolerate the 'I'm gonna die so gimme right now' for one second. Not with family or clients I was being paid to care for.
Yes, your parents should have help coming in. If they refuse and are still in charge of making their own decisions, then there's not much anyone can do.
One thing you should do is refuse to tolerate a moment of complaining from either of them. Do not allow your mother to vent to you about your father and how much she has to do for him. Don't listen to him either. If this is the way they want to live their lives, they can do so without the b*tching and moaning.
In truth, there really is no such thing as not being able to "afford" it.
If people are low enough income that they cannot pay what insurance does not cover, they are on Medicaid. Medicaid pays for aide care at home and also for managed facility care. They don't usually pay for round-the-clock homecare because a senior wants to stay at home though.
If the seniors have income, assets, and own property this is what's supposed to be used to pay for their care. So "hire someone" is possible for elders who have these things.
Not wanting to see their property and assets go for care is understandable, but it is not the same thing as not being able to get any care.
No one but some kind of saint could live with all that and not feel like those circumstances just STINK.
We get you.
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?
if I have to move back they will be getting an angry resentful caregiver who has compassion fatigue.
You will not have to ever move back. If worst comes to wordt, let them become wards of the state. The state will appoint a conservator for them who will place them in managed care and make their financial decisions.
As for the Medicaid lookback period. Where did they spend their money? If it wasn't 'gifted' to you then it's not your problem to worry about. If it is, then their house will have to be sold and the proceeds spent on their care.
Under no circumstances should you ever move back in with them. Not when you already know there is anger, resentment, and compassion fatigue. This will create the perfect storm for elder abuse. Don't ever do it. There are choices.
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.
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.
No, Mother Teresa did not single-handedly take care of tens of thousands of people around the world. She did dedicate her entire life in service to the poor and sick. She lived poor and humble herself too.
I too was brought up Catholic and went to Catholic schooling. I'm Jewish by conversion, but I still have respect for Mother Teresa.
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.
The advice is to use a specific technique to manipulate or influence the person that you are interacting with to do what you want them to do. “You catch more flies with honey than with vinegar,”
If you don’t want or need to deal with flycatching, don’t waste your time.
Sometimes the chance of getting the desired result seems worth the effort.
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?
and i love the way you write.
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?
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.
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
She can’t process music, so that also make her angry.
“Positively engage”? Ha. That quit being possible a couple of years into Dementia Land.
Really good to hear this discussed at last.
“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).
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?
You don’t have to have family experience to do a good job as a pro.
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.
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.
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.
Media doesn't exist to inform, it exists to support a narrative.
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!!
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.
_ Caregiving only works if it's done on the caregiver's terms. Not the person receiving the care.
It is excruciating to deal with people, not only with dementia but people who are just plain old, who can't make major decisions anymore. Or who can't clean themselves or any other number of things that just get compromised with age. Yet, often, you deal with someone who has to make all the rules. I've kind of put my foot down about this. I am the one who has all sorts of added work when a poor decision is made. So, now I make most of the decisions. I do phrase them in such a way as to try and make them seem like mutual agreements though.
Wow, I love that one. I love all of them but that leapt off the page!
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)
https://www.cardcow.com/841878/pick-door-damned-if-you-dont-far-side-gary-larson/
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.