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

All of that. Actually depending on outside help can be more stressful at times because it's a crapshoot as to whether someone will show up as scheduled.

That your personal schedule is no longer based upon your needs, but rather around the needs of the one you are caring for. It is a total hinderance on personal life. Even taking into consideration the use of daycare, and aids, it is non-stop worrying, scheduling, changing plans, shopping, household modifications, dietary needs planning, and full time activities director at the same time. It isn't fun, it isn't easy, but it is rewarding to know that you were the only family member willing to take the challenge and follow through with unconditional love and understanding. Hoping that someday, someone else will do the same for you after seeing the sacrifice that you were willing to do for someone else.

And even if the help does show up on time, can they be trusted to do what is right. Can you trust them to leave them in your home.
Without help can you actually take a bath and relax or was that noise something that requires your immediate attention.
Whoops! excuse me, I have to change her, clean the floor/carpet, and rinse out her clothes and hang them before doing the laundry. What were you saying?
Shoot the food is burning now because I got so busy.
Take notes and let me know how that show ends.
Dr. appointment tomorrow after noon! What else is in the area that I can take care of while out. (medical supply house, beauty parlor, etc.)
Ever had a brown torpedo slither out while cleaning up the last movement??
Change protective underwear twice in less than two minutes. Babies are not the only ones whose bladder is on automatic empty when exposed to air. Now I have to wash my face as well.
Why is this dinner plate in the planter? Where did you hide your dirty underwear this time?
What time is it? Time for more meds? Hers or mine.

It depends on who needs to know. It’s been my experience that even though people know how difficult caregiving is, if it doesn’t affect them directly, they just really don’t care what we’re going through. No one wants to hear or know what I have to go through with my husband, including our kids or his family, whom I haven’t heard from in 2 years. I wouldn’t presume to tell them anything about him or his concerns; or. mine as a caregiver. They seriously don’t care.

We have my husband's grandmother with us. Now first off, there is a generation gap. She lost her only child when he was 26 so now she only has her grandson and granddaughter (who moved to Montana last June). We made a move so that she is able to be in our home with our three children (20 year old and two 16 year olds). We also have aides that come in to the home four days a week and one day a week she visits a respite center (to get her out of the house) while we are at work. So it sounds like we are about where you are.
My husband does not have the flexibility with his job so I am the one to do the communication and fill in when there are issues with aides or doctor and hospital visits.
We also are starting to feel like out time is not ours anymore. We either have to take Grandma with us (which is getting harder) or one of us stays with her while the other goes. Then we both feel bad and are not gone long if we do that.
I also have gained about 10 pounds and my husband has as well. My husband is starting to not have the patience with her that is needed and I know her state is not going to get better only decline.

This is not a luxury gig. We have decided that we will continue as long as we can but we are seeing strains on our relationship that we do not want!

Exactly !
Thanks for sharing.

A lot of time wasted on sorting out fraudsters. Wether hired caregivers who go
through financials, steal wallet, attempt to take car, become "friends" sell bogus
financial products, services, etc. So much time wasted on dealing with helpers who are more about helping themselves. Or other scams.

There was a short while when my father's helpers actually helped, were on the
up and up and often even cheerful and professional. I remember walking away
with tears in my eyes because having people showing up and doing their job and
not trying to steal or create drama was such a wonderful (and rare) experience.

Add on the incessant child like demands and then the time and energy requirements of actual medical care, mobility, incontinence, endless specialized products, speciality services, organizing, mending, etc etc. It is so demanding just to be able to do the job "well enough"

People who are taking their Mom shopping once a week or who have helped a parent move once or twice, think they understand and that their have real experience with caregiving. Demanding caregiving situations are a totally different experience.

It's been nine years of caregiving as an only child. I don't even have the words to describe how tired and isolated I am. You have to be able to show up and be a friend to have one. I used to have friends but now I get my hugs from my caregiver support group. At least there are hugs and I have two times a month when someone says "tell us how things are going for you" and someone listens. I also used to be an artist but I haven't held a brush in years. In fact, I used to be a lot of things but I don't have the time, energy, or health to be any of them anymore. I miss what I remember about my past life. I'm also very appreciative of any kindness anyone shows me because I rarely have a day when I'm not struggling with something.

That I'm always second-guessing myself, so I really don't need to be questioned about my parents care, their finances, their health etc.  Believe me, I've asked these very same questions of myself a thousand times.  And now that my sweet Mama has died, my energy is focused on my precious Daddy.  So, no, I still don't have time to go out on overnight trips, and yes, I'm doing everything I can to make sure Daddy doesn't go into a depression, especially with the holidays.  This new norm is so strange and all I need is the knowledge that if I ask for your help, you won't judge and you trust I am doing the best for him and myself.

I wish they knew how hard it is. I am getting into arguments with family mem

I send you ALL hugs and a listening ear. Rant, cry, shout, laugh (might be a bit hysterically but laughter is good)I send love and compassion.

As one being cared for (and me caring for my husband) I get it. I really do.

Love to all of you great people.
Buzzy

Most of you have already said it all.
May God bless you all, and give us all strength.

Bettina said "People who are taking their Mom shopping once a week or who have helped a parent move once or twice, think they understand and that their have real experience with caregiving. Demanding caregiving situations are a totally different experience."
Yes this! I have no patience for those who whine about their stressful burden when their level of caregiving is comparably so minimal.

Only those who have experienced caregiving can really understand it. While we may put our lives "on hold," we often do it out of a heart of love for our dear ones. It is a 24/7 job 365 days a year. Yes, we do need to take care of ourselves so we can have the strength to care for others, but that's easier said than actually done. Caregiving doesn't always end when the loved one(s) are deceased. At times, their death(s) leave broken relationships that may never be mended. If you have a personal faith in the Lord Jesus, He can grace you in ways you never would have imagined. His strength does become your strength; His love—your love; His peace—your peace; His hope—your forever hope!

I am personally grateful for all the caregivers who are willingly and lovingly caring for their loved one at a time when they need it most. Not all caregivers are caring for elderly people, many younger moms and dads care for handicapped children. Some middle aged and older care for handicapped young adults and do this with grace and amazing love. Thank you, to all who care for others.

I am a long-distance caregiver to my 92-yr-old mom. I think I've done myself a disservice when it comes to my two very busy adult children, both in their 40s, especially my youngest. I've not talked about or complained about many things to them, instead keeping stuff to myself or not explaining reasons why my husband (their dad) and I decided to do this or that. I don't want to burden them with my troubles, especially since their lives are so stressful with their own issues. However, our oldest and his wife were caregiver to her grandma, so he has firsthand experience with this, but our youngest tells me, "you always talk about the same thing, so I'm changing the subject..." His life is in turmoil, so I just let that comment go. Also, recently a dear family member said she will be in my area next September and would love to see me and I excitedly said yes!, if I am not gone taking care of my mom. I'm thinking she misunderstood that as as excuse that I don't want to see her..., the broader communication issue is exactly what the orginial poster asked; how to convey to non-caregivers what your life is like? My life is so unpredictable now that it feels like MY life is gone. I can't plan anything without a contingency plan and emergency lists. I'm thinking that non-caregivers don't want to know.

Friends - gone!
Free time - what's that?
Take care of myself - Yeah, RIGHT!
exhausted - you bet!
worth it - absolutely!!!

I learned that my siblings are quite selfish. I also learned that just because your parents have been strong, independent, self-sufficient most of their lifes does not mean that when they become elderly that they will be strong, independent, self-sufficient. Check up on your parents, even when they say "I'm fine dear, don't worry about me" Check up on them anyways. Especially if they've always been strong, independent, self-sufficient because they will want to stay that way and will allow you to believe they still are even when they aren't. Don't learn the hard way. Insist on helping them even when they say no. You can do it in such a way that they still think they are making the decisions. It requires a bit of sleight of hand but you can do it.

And continue to take good care of yourself cause it's a much tougher job when you don't.

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. ❤️

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.

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

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.

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.

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.

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.

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.

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.

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.

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

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

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.