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

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.

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.

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).

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

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.

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.

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

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.