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

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.

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

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.

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.

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.

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

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

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

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.

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.

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.

Exactly !
Thanks for sharing.

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!

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.

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.

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.

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.