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

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).

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.

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!!

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!"

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

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

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.

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.

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!

The total exhaustion.

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

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

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

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.

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.

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!!

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....