What is the ONE thing you wish you knew before you took on being a caregiver?

How mentally exhausting and frustrating it can be.

I wish I would have known that this disease causes so much stress and anger and a roller coaster of emotions every day that I dont know how it is humanly possible to be alone in it. You need support from family, friends, anyone willing to be understanding of you and your situation, and do not judge yourself harshly, you are human and can only do so much, you have a life to live as well, it is important that you take care of yourself through all of this marathon. I have a spouse who is only 59 with early onset, who has been unemployed for over 16 months, a son who is 20, a business to run by myself, a home to take care of by myself, and my spouse who declines continually. A good therapist for me is a must. Good luck to everyone going through this

I wish I would have known that this disease causes so much stress and anger and a roller coaster of emotions every day that I dont know how it is humanly possible to be alone in it. You need support from family, friends, anyone willing to be understanding of you and your situation, and do not judge yourself harshly, you are human and can only do so much, you have a life to live as well, it is important that you take care of yourself through all of this marathon. I have a spouse who is only 59 with early onset, who has been unemployed for over 16 months, a son who is 20, a business to run by myself, a home to take care of by myself, and my spouse who declines continually. A good therapist for me is a must. Good luck to everyone going through this

One day, one hour, sometimes one minute at a time. Being patient, caring, forgiving, every minute of every day, day after day after day. I just don't think about it, I just do it and get it done with and move on to the next issue. Someday I won't be able to turn around and see my Mom and Dad, they will have moved on to the next life and be with God...I don't want to think about that. As stressful as things get and as bad as I know my Mom will get, if something else doesn't kill her first, I'd rather have her here with me. Selfish I know, but it is just the way I feel right in this moment. Maybe I'll feel differently the next time she does something nasty, but she is still my Mom. And standing behind her, in his Victorian way, is my Dad (still Daddy in my mind) silently supporting her, me and anyone he comes in contact with. Yes, he is way up there on a pedestal and I know he is only human, but considering what we have all put him through over the years, he deserves to be there and I pray to God that when his time does come it is quick and quiet. My mind is really wondering around today, but that's just the way it goes being totally immersed in caring for both of my parents until they are both gone from this earth and I will do whatever I can to make them as comfortable as possible, caring for them the way they cared for me while I was growing up. OK,,enough already, I have stuff I've gotta do, thanks for allowing me to vent. It really does help soooo much.To All, be well and God Bless - Sue

I wish I had known my siblings wouldn't help me. I just "expected" that they would at the very least support me, but they do not. They vanished. I didn't expect the abandonment and it has made things very, very difficult for me, both physically and emotionally.

You all have a lot of the same answers... I guess I would never have believed the backlash of the "caregiving roll"... like the loss of who I was, the loss of what my life was, the real loss of who the person I am caring for was and being so blind or ignorant of how society treats the needs of the ones that we care for. How absolutely lonely I feel day in and day out. I don't think anyone can prepare for what happens to the caregiver personally and mentally and once you are in the race it is hard to see your way out and knowing that you will never ever win the race.

I wish I had known how mentally taxing this job is and also how it will affect a marriage. We are caring for his parents so most of the time I feel like as long as I do what I am supposed to do, laundry, cooking, etc., everything is fine. But I have days when I feel like it is me against the 3 of them. We also have no one to fall back on for help. Would we have done it differently? Probably not. Honor your father and mother that your days may be long. That is what keeps ringing in my ears.

how tired and lonely I would be. How heart breaking it would become to be her Mother instead of her child

I would have gotten (outside) help in much sooner-and by doing so, would have taken better care of myself! Mentally and Physically.
You are so caught up on being the best caregiver and doing what needs to be done-you often neglect yourself. Later, when you realize that has happened you decide you need to care for yourself and sometimes some damage has been done. Keep that from happening! Get help in! Get them used to other people being around helping out. Don't worry if they don't like it!
I fought and fought for my sibs to be that help. I couldn't believe many of them just wouldn't help-and beat my head against the wall not wanting to give up on them. Forget i! If they aren't helpful-they aren't going to change...so get outside help-don't be an angry martyr trying to guilt them into it...just accept it and move on! It still baffles me-but I have gotten outside help to come in and sit with her this year and am better for it. Don't fight it-just do it! You need to take care of yourself mentally and physically...keep those Dr appts...have lunch with friends...this is a lonly job so don't lose those friendships!!! Do what you have to do to get out someitmes! It is not selfish! It will help you keep your sanity! Sometimes, when I get someone here-I put earplugs in and an eyepatch on and I just sleep! Not monitors, no interruptions! And no guilt. I need it. I deserve it. So, get outside help in early.... I wish I had.

You are not just caught up with being the best caregiver-you are so busy with it every moment!!! Entrenched in it!!! Exhausted by it!! Consumed with it!! There is no time to care for yourself some days! (I didn't want anyone to take that the wrong way! Sorry!)

That there are so many times when you ask yourself why you signed up for this because it's so exhausting. Then, after your loved one has passed away, be prepared to feel guilty somewhat for ever having the thoughts that you inevitably will have had.

Probably just
1 that not all people with dementia will have the same personality, my granddaddy was the nicest mam until his death 3 years ago, my grandma the total opposite
2 just because of my age (18 when it started) I wish I'd known more, maybe (or not) I'd at least been more prepared, just knowing that either of my grandparents could've turned into monsters

The END DATE : )
but, seriously.

Wish I had known that instead of a marriage, that I was taking on being a caregiver; my world would get smaller; losing family and friends; and that I would be blamed for things I could not possibly do for him.

I wish I had known how EXPENSIVE it would be to care for him. I think he and I both assumed that his savings would cover everything.

I wish I had lived life more BEFORE being placed in a caregiving position. I'm only 40, but there are no prospects for any semblance of a life for me until "IT" happens. The way things appear, that could be years from now when I will be too old to even care.

It's official: Dad will live a full life and I will die bitter and alone. I don't even try anymore. It appears that for some reason my purpose is to do for everyone else. I'm getting older, fatter and angrier day by day. I've given up on dating or even remotely trying to do anything for myself. We're both pretty miserable.

Hmmmm,
Hard to say. Just one thing? I guess it would have to be my siblings becoming complete jerks. One mostly absent and the other a manipulative money grubbing psycho accusing me of elder abuse when I cut him off from Mom's checkbook after years of his abuse. Now I get hate filled mail and horrible accusations. If I had known, I would have walked.