What do you wish non-caregivers knew about your life as a caregiver?

1. The financial worry of not knowing if you’ll have enough money to care for your loved ones.

2. The fear that the caregiving situation will never end and the fear it will end because of death.

3. The lack of support and empathy from those that should be there for you.

4. The lack of support and empathy of those in your situation because it becomes some kind of competition and they always have it worse off. ALWAYS.

5. Not ever being able to make a spur of the moment decision...about anything.

I could go on and on....

I am tired of people stating that I am a controlling bit@h. My mother wonders around the house thinking every is fine. Awhile she has spend all her money and racked up credit card debt that now she has to file bankruptcy. So, now I have to take over her finances and save the house along with everything eles I have to do. My brother believes and tells anybody that will listen to him that I cause my mother's cc debt when I never saw one penny of that money. He is the one who helped her spend the money! I have my own money which I am using to pay for the bankruptcy. Other family members are mad at me because I won't let them in the house, well, I haven't seen or heard from them in 20 years, now that my dad is gone and because they think my mother has money now they want to see her...I don't think so! Again I am being a controlling bit@h. Well, someone has to take charge of this mess and it sure in the h3ll won't be them or my brother. Only if they really knew what my mother was like and how she treats me; how she has always treated me! Oh, I don't work therefore I don't do anything but live off my mother! That my life is so easy and simple. That would be the day....These people would break under the presure I feel everyday. Knowing that every decision I make could have bad conquestions! And I know I don't have it as bad as most of you on this forum. Bless all of your hearts.

I have already hired a lawyer and made out a financial plan. And no I really don't care what my brother tells people...I am just tired of always being the bad guy!

Merry Christmas!

((Hugs)) to everybody who needs one!!

Most of the post have dealt with caregiving in the home. And believe you me it ain't no honeymoon, but you all know that.
But what about those trips to the ER? Do any of those former friends have any idea what all those may entail? Blood draws, this person or that person popping to say we are going to take care of you. Never to be seen again. Reviews everything on his screen on his lap top probably in the DR's lounge and no one providing us with information.
Here is what happened to me in the last week.
Cardio says to put her on a heart healthy diet, restricted sodium. Hospitalist says she is dehydrated, start a sodium chloride IV. HUH! Did he read the cardios input. Of course not. He floats thru the hospital , feet never touching the ground. Has no time to speak with an uneducated spouse.
Two days later, BP so high six of the nursing staff are working feverishly trying to get her BP under control. Call the DR. Stop the IV. Might be the cause.
Two of hours of me sitting in the corner thinking this is how she is going to leave me. Should I start looking for a mortuary? Will I only need hospice care for a while? Do I notify my brother to have the cemetery plot staked out?
Finally they get under control. Now we wait. Day three, medicare is over. Hospital calls for transport to rehab. One las t BP check before she leaves. BP too high, cancell transport. Wait two days and try again. BP good hurry up and get her out of here. Sign forms that say I have been fully informed of everything.
HUH!
Get her to rehab. Stay until 9:00pm. Go home and pass out for five hours. Rise and no shine. Hurry back to rehab. Find out that she in now able to stand and walk. Went to bathroom by herself with minimal assistance.
Should I call any of the former friends? Naaaah. They have to go to bingo. Can't miss that.
Watch DW sit up on her own. Start feeding herself. Little assist in bath room trips. THIS IS GREAT. SHE IS WALKING. Should I tell anyone. Nope.
Watch her walk down the hall with her walker, turn around ach come back to room.
Next day find her in wheel chair at nurses station. Politely ask why. "Because we could not keep up with her. So we let her visit with us." What a great crew of nurses. (time to get a little misty and thankful.)
Don't forget to educate each shift on the peculiar quirks she is developing. Like hate apple sauce. Got her to swallow meds by giving her a small piece of pork and some frozen cherries.
Have watched her thru three meals to be sue she eats something aand does not choke or gag. The staff is very short handed. I must do many things that The staff should do. Walk her, escort her to bath room, wipe and clean her,dress her, and almost anything else.
Would those friends understand any of this. Hell no. they don't even want to hear or they have all of the solutions and wonder why I am so concerned. She will be taken care of by the nursing staff.(only if they have the time between their other patients and family)
Sure would be nice to have a day off to trim the bushes, but she needs me.
God Bless each and every one of you folks that know what and why this happens to us.
Merry Christmas to all ( good night I am tired.)
Nine pm, time to go home. Been here since 5:30AM. I am tired.

Such pouring out of hearts and souls here. Group hug to all of us.
For me, wish the doctors and nurses could see through his lies, his refusal to take meds, his refusal of Home Health nurses temporarcoming into the home, his refusal to move around and do breathing exercises to get better.
I’m feeling very manipulated, by a spouse who wants a servant, doesn’t want to get better. Two weeks post-op, still won’t make his own coffee, simple breakfast, nothing. Yes, I can and do prepare meals, but I refuse the demands to be his short order cook. That’s just manipulative. Oh, and complaining his food tastes funny, is burnt, when it is not burnt, but browned slightly....he is always welcome to cook food the way he likes...wish the medical team got the real picture. But he lies, telling them he’s walking and doing breathing exercises, when he’s not.

Smeshque: The task of it falling on one person is typical. But God knows what you do. 💙

That I always feel the responsibility of filling the void that my 5 siblings and dearly departed Dad have left in my Mom.
I do my best but it's impossible

Siblings who criticize, but offer nothing to make my caregiving life easier.

The total exhaustion.

bettina: "The rolling circus of chaos"--so true and very well stated. That analogy is spot on!
BlackHole: You're right. I hope I don't cause my own daughter such strife! Good grief!

I'm just trying to hold everything together. I have a fast-paced, high-profile job where I compete against employees who are young enough to be my children. I am a Minister's wife and am active in our church, and I am the sole caregiver for my Mom. I am still grieving my Dad's death (he passed two years ago). I am over 60 so my health is starting to suffer. I'm doing the best I can, running to keep up. Please cut me some slack when I am unable to do everything you expect from me. A word of encouragement means everything to me. To those who have no patience or understanding of my situation: I hope you never find yourself needing patience, mercy or grace from others. It's a humbling experience when those qualities are in short supply.

Dixiedoodle: OMG it is like I wrote that!! I may not have to help Mom shower or use the toilet anymore but everything you said is 1000% accurate. Add to that: paying the bills, getting the medication, sorting out the continuously inaccurate invoices from the home health aide service. Making sure she has food & is eating - cooking the food, cleaning up. Shopping at a moment's notice cos NO ONE tells you she's run out of toilet paper until she's run out of toilet paper!!! "But your Mom has an aide" - so what?? So I get a few extra hours to do all her other stuff. And I too work. Sort through health plans cos her old one was terminated. Keep track of ALL expenses because you can't use her money for anything but her needs. Yet her credit card doesn't have enough credit line to pay the aides and of course no one is giving her a new credit limit (spent 3 hours yesterday trying to do it), so there are multiple spreadsheets for this. I have to ask permission to take an hour or 2 to meet up with a friend - what am I 12 again?? And now she has become very very very nasty to the aides, to me. Thanks for letting me vent - too bad the people in our lives won't be seeing this.

Yes, yes, yes. I want to add that I'm too exhausted to take care of my own health issues. Peace, dawn1947😿

NON CAREGIVERS DON'T WANT TO LISTEN BECAUSE THEY ARE AFRAID THAT THIS MAY BE THEIR FATE TOO! - those same ones who won't listen will be coming to you for advice when they get into your shoes in the future ... be kind but a few 'don't you remember when I was going through that with mom?' will not be out of place

Why worry it may never happen - plan for the worst & hope for the best - then keep on planning - the reason non-caregivers don't get it most don't know what they are having for dinner tonight but caregivers generally know days in advance

You no longer worship at the alter of 'I'm the centre of the universe' because you have concerns outside of just 'you' & are a better person for it - many of those who don't understand are too selfish to 'waste time listening to all that stuff' because it is not fun - don't waste time on these shallow people

You often have to leave your home, state, spouse, family, pets, church family and miss your own doctor & dentist appointments because despite all your best plans & efforts, your elderly parent has refused to leave their home even though they have MANY health conditions, are falling in their home, are causing fires in their home and MUCH MORE, BUT ARE NOT TELLING THEIR ADULT KIDS BECAUSE they say childlike~"I don't have to tell you everything!"

Dixydoodle; Hello!! Good question !! I would like outsiders to understand what it feels like to have not 1 job but about a dozen or more ,we are Mothers , doctors, Nurses,physical therapists, we must make life changing decions on a daily basis and everything weighs on our shoulders every choice we make for another persons life who has lived 3xs the life we have lived!! Every day 365 days a year 7 days a week 24 hours a day it NEVER EVER STOPS!!

I think I would like people to know that I have feelings too. That I am doing my best to make the patients time left on this earth to be as
comfortable and painless as possible.
having four (x) sisters and not one calling, stop buy or even send a card makes me feel used. uncared for by them and most of all it hurts me to see my parents hurt due to their selfishness. To me that is unforgiving and that is why they are my X sisters now.
respect, care, help, and love should be what each and every caregiver deserves. Most caregivers are in it for the long term
putting their lives and own families on hold to help ones we love.
what about a simple thank you from a family member. is
that asking to much? Shame on all of you who take advantage of a caregiver without even thinking twice at what we all are and have gone through.

For myself, I only wish that a friendly text would come, every few days, to ask how I am. It would be great if people from church would send a card, or invite me to dinner at holidays, cuz I haven't gone out for a holiday in 7 years. Or better yet, the church or a neighbor could bring me some food once a month, (since they only do that now if someone has died). I don't have time or interest in talking on the phone, or telling people all my business, but its so isolating & depressing to be consumed with detiorating elderly all the time. 'Forgotten' is what they should know about me as a caregiver, (& as an elderly woman also).

It is so helpful to hear all of your responses and it makes me feel not alone in all of this, I am the youngest of my family and single and live with my 93 year old Dad and has been caregiving for over 2 years now. It is what I call the "new normal" and when my older brother from the east coast comes by and talks about the movies he sees and I take a deep breath and sometimes think I wish I have time to just sit and watch a movie like long ago...But like I say it is the new normal and I am in peace in knowing that I am making a difference in my Dads life and making him happy everyday being able to live in his own home.

My terrible knowledge that no one will do for me what I did for my mother.

Anytime someone poses that question to me of what is it like to be a caregiver. I instantly realize they have a "carefree" lifestyle.

For the harder cases, I often draw the similarities to what a newborn requires. People seem to grasp that a bit easier. I utilize this site for engaging in caregiving issues, although it's my children's complex medical and mental health needs that bring me here.

In specific response to caregiving I typically ask if they are considering being a caregiver? If so who? A sibling, parent, Aunt, in-law etc. For all the similar situations, there are just as many variances.

Even more important to me, and echoed by many here. Are they asking because they are trying to support someone who is a caregiver and wants to better assist them. Because there is a desperate need of that in particular.

Caregiving questions tend to be focused on caring for an adult in need. The truth is, there are lots of children needing caregivers and it is very different than simply being the parent of that child. Someone too often overlooked.

I love the posters statements. Many responses here have made me chuckle as I can relate. I am divorced, disabled single mother, caring for two children who are medically fragile and whom have significant developmental delays from brain injuries. I often do not get to be a mother at all. Just as a son caregiving for his mother, probably rarely gets to simply be the son either.

Being a caregiver especially to family primarily means to accept extreme isolation, painful exhaustion, frequent self neglect to complete neglect, and emotional abuse, even if completely by accident. It shouldn't mean that, but too often in the US, it does. It means being or at least feeling abandoned alot.

I started off with a critically ill infant having explosive bloody stools, was deaf from perinatal infections, and acute microcephaly due to a spinal cord injury I received in a car wreck while pregnant. 3 months after delivering, from wheelchair basically, my oldest fell at school and suffered a traumatic brain injury at age 4. I found myself disabled, in a wheelchair, with a newborn trying to die every month and a 4 year old having lost most of his short term memory, motor coordination and greatly altered personality.

Not only did I get thrust into caregiving mode, I was in desperate need of caregiving myself. 12 years later and not much has changed (except I am divorced and walking- God is merciful). I think back to my childrens' newborn days and can completely identify the same level of need now. Except its adult sized protective undergarments instead of diapers, pediatric specialists as opposed to geriatrics, Medicaid instead of Medicare, and tons of extras frustrations that relate to school age needs.

What is the same is the drain, frustrations, loneliness, fear, loss of income, loss of friends and companionship, being misunderstood, and the deep sense of loss from watching your life go by. Becoming someone who simply struggles to exist is cruel, but also what caregiving often ends up being if not supported by others outside of that role.

And for everyone who says, "wait a minute, those are your kids...", yes true and because of that I work tirelessly without hesitation or regret. However, to say I am mothering would be a partial truth. Just as a daughter caregiving a mother can't in any way enjoy a mother daughter relationship while emptying a bedpan at 1AM and clearing her surgical drains from a hip replacement gone wrong.

The biggest misconception of caregiving is that love is enough. It's not. But it sure makes it easier. And healthy relationships before caregiving needs arise also make the most positive caregiving situations. I love this community here.-PJ

DITTO DIXIE, we are caseworkers and daughters. Our mothers/our patients. My life completely revolves around caring for Mom and nothing else. Respite, really? I am her proxy, I am her voice..her rep. I choose not to go anywhere that will not allow me to be within 1 hour of her apt. My siblings step up when help is needed. Financially and in other ways. But, it is my job, my responsibility and my choice. She sacrificed everything for us...now it is our turn. FYI, Dad has been with mom for over 65 years. However, he is 93 and is now starting to show signs of going down the same path. I have prayed that God not let him get there fast. One is enough. He still bathes, feeds, and cares for himself. He is just becoming forgetful which is expected at his age. Fortunately, I went thru interviewing, and personally training about 43 aides until I got "the great aides" which make all the difference. When one of them is out, I fill in. So for the "non care givers" ...GIVE MORE!!! To All THE CAREGIVERS...MAY GOD BLESS YOU AND SAVE YOU FROM THIS WRETCHED DISEASE. THANK YOU FOR ALL YOUR SACRIFICES...YOU ARE ALL ANGELS.

That it's not always all warm and fuzzy like in the Hallmark movies, particularly when you have a difficult or narcissistic parent. And how tiring it is.

When mom lived with me, I literally hardly had time to eat or sleep (and couldn't sleep much anyway), much less go hang out with friends or to social engagements. Now that she is in a facility, I'm able to sleep better, but it's still difficult and emotionally draining at times, especially when she is having a paranoid or psychotic episode and I'm having to either try and calm her down, or talk to medical professionals that have been summoned if it's really bad. Not to mention paying her bills, rent, taxes and upkeep on her house (that we are unable to use for her care as of right now due to it being tied up in court because of my sister's financial exploitation), dealing with attorneys and court related to said home, shopping, prescriptions, doctor's appointments, etc.

When people who are not caregivers talk about it being a gift or an honor to take care of a parent, or when they tell me "they took care of you so you take care of them" not knowing what it's like to have a personality disordered parent who didn't really "take care of you", I imagine they are thinking of movies where it's warm and fuzzy and glowy, and everyone feels honored. I suspect that's not the reality for the vast majority of us. I think most of us are just trying to do the best we can and survive.

Humm, I wish that people would understand that there is unconditional love driving me to care for my parent and that is why I do it. I wish those who say to, “back off” on your visits would understand that it’s a horrible feeling to wonder how my mom is doing knowing she will need someone to help her deal with every aspect of daily living and the wondering is more stressful then the being with her is. I wish that those who say to take care of myself would actually provide me their time to sub in and be the on call person so I could go away for even a day without the constant worry of when ( not if) my phone will be ringing from the memory care facility. I wish people would understand that NOBODY asked to be frail and ill and no matter how much anyone “planned for their old age/retirement”, the material costs are astronomical and unless a family member or friend helps out with either time or money, your loved one will be in a state run facility or end up dying alone in their own home because everyone thought things were just fine and nobody believed things could get so bad. Most of all I wish every human being would spend one 24 hour period with a completely dependent adult to get a true understanding of what it means to have every minute of a day being responsible for another human being that is not an infant, but is a full grown adult that you can’t pick up, who may not be able to communicate at all, and who once was a vibrant productive being capable of now doing next to nothing. Maybe then, non care giving people would have true empathy as to what you are doing for whatever reason and be able to understand that you just cannot “ drop everything” nor turn off your caregiving persona and go on with your life as it was. As we who have done it or are doing it know, caregiving is a life changing event for the person you are caring for and for us as well.

Although I am not the paid caregiver, I am the daughter/ manager for my mother. Like you say, it is not being free when the aides are there. What a worry it is if someone cannot come in or be on time and that means frantically trying to get a good replacement with short notice. Arranging a schedule for 4 different nurses can be really challenging.
Also, I know how it swallows your time and energy to do grocery shopping ( for two households) and delivering, make doctors appointments, transportation needs, refill prescriptions and organize meds, buy any supplies like disposable pants, and organize any social stuff for your parent.
I would like friends to understand that we caregivers are exhausted, and not able to care for ourselves sometimes. Our own homes go neglected because we are so stretched for time. Social engagements can be the first to go. We are often unable to help others because there is simply no time for anything else.
I would love to hear someone say...can I go to the store for you and your parent? Or even...Tell me how I can help you out this week? Or, let me know when you have any time and I will take you to lunch or a movie. I guess what we need is a little TLC and understanding.

I would want non caregivers to know that it is extremely hard for me to ask family or friends for help. Also, I'm afraid that if I tell anyone how hard things are, i'll start to cry and won't be able to stop.
Thanks so much for this site. Peace, dawn1947.

Even though my mom passed 2 years ago, I still read this forum. My heart goes out to you and all the other caregivers. I relate all too well. Instead of being thanked for what I did, or getting help, I was basically told it was my duty caring for my mom. The others had families, etc. They did not make excuses, they just expected it of me and I stepped up to the plate of caring for my mom, because I was a medical professional and the single daughter. The truth is, they just do not and will not do what we are willing to do. It is selfishness on their part. I believe they have no guilt.

I was told by a geriatric professional that I would be blamed when something happened. It made on sense. That is exactly what happened. I did not get it immediately. But then it made sense later. They needed someone to blame for their inefficiencies and maybe subconscious guilt.

It is very sad that adult children cannot come together when the parent is in need. I think my mom knew there was a rift, even on her death bed and I am sad to know that she died knowing that.

I no longer speak with my sibs as they tried to turn my mom against me, were successful for 8 months when I did not see her. We got back on track and I was with her in the near end. I have no guilt, but doubt they do either. Why would they if they were capable of changing the will and taking everything. Karma has found one of them in a very sad way, and it will find the others. I feel sorry for them more than anything to be so evil and hateful.

I wish you all the best, it is a tough journey, but for me I know I did my best, sacrificed a lot, but have zero guilt.

All your descriptions are right on target. I cared for my Mom at least 19 years on and off, and she was bedridden in my home for nearly 2 years at the end of her life with multiple, rough health issues. Hospice did help, but of course all work was left to me as I am an only child. Now my MIL is heading into decline and my husband and I have and may get called on a moment's notice. He is now alone in this as his sister died. I find that old "friends" just don't get it at all, their parents went fast, and now they are on a retirement rampage showing off with their botoxed faces the trips they take, and expensive homes they bought with inheritances etc. Then there are the ones that think just because you have been a caregiver that you will be at their beck and call. I guess the fastest way to get rid of the braggarts is to say someone is ill, and they pity you at first and then run. I have even heard the reaction of "call me when you are ready to go out", (meaning provide a ride somewhere most likely). Good riddance. I cannot stand to be pitied. Some people even think that once we were caregivers, we will always be caregivers, even pushovers, and provide help and rides to them! Yet no one even showed up at my door with a lasagne or bag of McDonalds knowing how rough I had it. They sure are quick to expect rides to places though and to show you how they "do" for others. Only we caregivers know how hard physically and mentally this is. It has left me with some anger issues towards those that don't get what this means.

The frustration is that it is like caring for children but the parent just gets worse, so there is more and more work. There is no appreciation from them. No one thanks you. So it gives you no build up or relief. Other people have dropped the ball in being a friend, saying encouraging things or stopping by so you can shower.
Family is not family in this culture anymore. We used to all chip in and help with an elderly one, now everyone runs the other way, or lives far away. But the expectation that someone care for them is the same and the resources are slimmer and slimmer to this new generation of care givers.
My heart goes to you all. My mother is heading down the path of needing care and refusing to care for herself now , or to go to assist living.
WE who give have hearts that hope we are making someone's life of quality and when we have nothing but the struggle to make it happen, we burn up

That there is constant exhaustion and even sleep deprivation because you get in bed and can't stop thinking and worrying about what you should do/need to do. I feel horrible that there aren't enough hours in the day, and that the house needs major attention because the past few weeks I have been exhausted and said to hell with it, no one else cares, it doesn't bother them, and I'm tired of cleaning up after them. Mom has dementia and lives in the delusion of how she always cleans...and dad just makes a mess and it is invisible, except when he notices it is clean again. I was keeping track of the hours I put in and even got so tired I slacked off on that. I am sitting in the middle of my 100 sq ft bedroom which has never been as much a sty as it is now. I can't believe how soon Christmas will be here and my holiday cards are not done. In the past month or less I have dealt with the research and purchase and hassles of dad getting a new car; the retirement of a dear friend who is like family, and the sudden death of our dear director's daughter at age 33. I don't find caregiving for these people rewarding. I find it an obligation that is exhausting and I am tired of thinking and operating for 3.

Dixiedoodle, I hear you! I also go through the constant phone calls when caregivers don’t show up, scheduling doctor appts & taking Mom there, making sure meds are refilled - & that doesn’t include the many medicaid apps for both Mom & Dad that nearly killed me.
those who don’t have to do this don’t even try to understand - my sisterasked my husband why I was complaining & asking for help. So, sorry for my long complaint. You are not alone! You will find lots of caregivers on this forum who are also struggling & sympathetic. Don’t listen to the few who flippantly suggest it’s not that much work. Even with aides it’s a life-consumer! Stay strong & know that we understand your situation & support you. You are wonderful sacrificing so much for a parent. ❤️