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

I knew right from the beginning that my sister and brother wouldn't do anything to help me and my husband with my mother. I've done EVERYTHING for her. They would never visit her when she was healthy and lived alone. I always made sure she had food, meds, care, took her to dr appts etc. Then when she had several falls and couldn't live alone any more, I was there for her. My husband and I visited several Assisted Living facilities in her area so that my sister and brother would be close enough to visit her. They both live about 10 min. away and she's been at AL for almost 2 years now. I can count how many times my sister has visited on 2 hands and my brother on 2 fingers. I live an hour away and must travel to see her and take her to dr appts. and make sure she has anything she needs. I see her at least once a week sometimes twice and I call her every day to make sure she's ok. I just want to make sure she can depend on me to take care of her needs. My siblings obviously could care less. That's really sad. I've asked my sister a few times to pick up a few things for her and I hear sighs and groans all the time. How can you let 1 person do everything. Thank God I have my husband. He stands by me and the only complaint he has is that when I get upset, he gets upset and then he feels like going after both siblings. I might as well be an only child. I don't regret what I've done for my mother and at least when the time comes and she's not around, I'll know I did the right things for her. I couldn't even get my sister to take off an hour from work to make final pre-arrangements for my mother for Medicaid eligibility. My regret is that I should really read my sister and brother the riot act but then they'd never visit her. I could've told them off so many times and for good reason. They obviously don't care about her let alone me. I also feel betrayed.

Hi SS,
The hardest thing for me to cope with has been the betrayal of my family. They have acused me of terrible things that aren't true and basically neglected me and mom. The only reason they are paying attention now is that I tried to commit suicide and they are afraid that I will hurt mom. I;ve never done anything to harm my mother, but that is their logic. Again, they don't care about me.

Thank you, all. I appreciate it!! I'm seeing a few trends here that are obvious to all of us here, but may not be to the person who has yet to take on caregiving. That's what I'm trying to address; so they don't go down the slippery slope. I hope more peeps will chime in with their ONE thing they wish they knew before taking on caregiving.

Luv to all.
-SS

These comments are very touching. I am glad I found this site before my mother really needs help. It has opened my eyes to many things. Her present problems, her future problems and my sibling who is doing nothing to get things in order so he won't be the sole caregiver. I see what is coming, he has not a clue. Karma.

I already answered once about no one will probaly help also wanted to add one thing I really was desperate when one night searching for a ailment of my MIL's I found this site... I would say join aging care because when no one else is there for you there is a group of loving people thats been there some done that but great group of people that just might help you get through your day as a caregiver.

I wish I would have scheduled a productive plan that would include my self care in place when I started so that no matter how crazy and demanding caregiving got I would not allow my own personal needs to be put aside. Making this distinction is very difficult to do because you become so involved in doing a good job of caring for your loved one that we have a tendency to think "what are my needs compared to theirs in this situation" we forget our own needs until it becomes a huge problem and resentment creeps in. I think if I would have scheduled specific activities for myself each week when scheduling appointments for my Dad's needs I would have recognized right away when I was doing to much and would have learned to ask for help or seek help much sooner. So basically we need to get tired while including our own activities and then ask for help without giving up our own personal activities.

Not only is no one willing to help, they stab you in the back while you are sacraficing life, health, sanity and youth. I believe it is because they feel guilty.
No word from them in years...no card, call or even inquire about mom.
They will come crawling out of the woodwork if she passes.
To make a caregiver's contract. Although that sounds silly to me even now.
She's my mom. I love her.

The thing I wish I would have known about is all the decisions you have to make that you are just not prepared for such as DNRs, hospice and nursing homes, it's just overwhelming.

Had I know how mentally exauhsting this is, I would have gone into another field....
That dealing with the family is sometimes much harder than dealing with the person with Alz...

Well, tbailey and GrandpaHiker answered for me. I too have 4 sibs. I wish I'd have known that all the love that is so freely expressed in my family, was just lipservice.

I wish I had know not to expect any help from my four other siblings. However, I would still make the same decision to try my best to make my mothers final years as good as I can for her.

That its a job that you can't quit easily. Once you're the help, you're always the help. There's no way out. I would've moved far away if I knew I'd be stuck here being their complaint department, errand runner, grocery service and driver. I'm resentful. I'm lucky in that they don't live with me, and they never will. I'll never do this to my children. Of course, after having a grandmother live with us when I was growing up, my mother said she'd never do this to her children. But, she'd move in with me in a second if I offered it. She's forgotten. I hope I don't.

That if you are going to agree to be main caregiver You better be ready because all them siblings people you think will help Probaly will not .

I wish I would have understood how Medicare actually works. I was told in the hospital that my mother would have 100 days at the rehab center. We get there and find out that while that is true, the patient must be improving to qualify! Mon is non-weight bearing for 8 weeks. We could have taken this money and gone to the Ritz Carlton and fed the sea gulls for 8 weeks and then returned for physical therapy. Also, much, much earlier that what I did, I would have recognized the need for outside help and not have put it off to appease my mother. Didn't want to anger her!

That it makes life so wildly unpredictable, you need back up support in some form to backstop you somedays and deliver respite care other days. Although the actual answer, for me, really is, "don't do it." That's the truth.

That I wish that I would have done something more with my life and made better choices and not have so many regrets.