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

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.

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.

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.

The END DATE : )
but, seriously.

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

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.

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!)

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.

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

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.

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 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.

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 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

How mentally exhausting and frustrating it can be.

How lonely it is. I promised myself when I was in my 20's that no matter what, I'd do my best to be here and God made it possible. I've had to walk (or run) away from this twice in the past 5 years but I'm back again and this time I won't leave no matter what. If my brothers help so be it, my sister is to far away to be here physically, but she provides emo support. My sibs have all thanked me for being here already, a show of support and love that I never thought I'd hear. But I am lonely, isolated, no friends, no social life, but that's OK, I chose this, and I will complete it. Thank the Good Lord I found this site. It has already done so much to help me, and I hope, in some small way that my comments have helped someone else. Stand tall caregivers, you are all angels for what you are doing. Smile, be well.

Magnum! OMG! I miss you! Thank you for posting! Yes, I had a similar situation in that when I started to prepare the plethora of paperwork for Dad's Medicaid application (anyone been through that???....exhausting!!), I didn't know he had 8 (yes, 8), different insurance policies. Some had stock attached to them. I had to sell them all and the stock. It took many, many phone calls, faxes and letters because they won't even talk to you if they don't have the POA paperwork on file. So I send it. Then send it again. Then they say, "we didn't get it," "we have no record of it." Just maddening. Anyway, getting your parent(s) or person you are caring for, paperwork in order BEFORE something happens can make life a lot easier. So everyone please heed that advice.

xo
-SS

I wish that I had already known about my mother's long term health care insurance as well as where she had put my medical and durable POA. Because of not knowing where they were since 2002, we had to have them made again in 2009 right before she had a major stroke followed by breaking her hip and landing in a nursing home which my step-dad blames for her current state of dementia and not getting out of bed to learn to walk again despite PT's best efforts.

I have heard that long term care insurance, especially, anything reasonably priced with decent coverage is getting harder and harder to get. It seems that when it was originally setup they didn't know how long people were actually going to live given the medical advances of today and how long many are living in nursing homes. Additionally, there are so many boomers, I think the insurance companies may be overwhelmed with the staggering numbers that may need to be served for indefinite periods of time in the future. Any other thoughts on this?

I have heard that long term care insurance, especially, anything reasonably priced with decent coverage is getting harder and harder to get. It seems that when it was originally setup they didn't know how long people were actually going to live given the medical advances of today and how long many are living in nursing homes. Additionally, there are so many boomers, I think the insurance companies may be overwhelmed with the staggering numbers that may need to be served for indefinite periods of time in the future.

WOW! Our stories are more similar than dissimilar! Today I spent my entire Memorial Day at the hospital...thos time mama meeded a pacemaker put in. I can't tell you how many holidays, nights, and weekends have been spent at the hospital...and we even have a DNR signed! But there is always something.
I, too, moved my mom to my city, one hour away from where we lived all our lives, and all of my parents adult lives. When dad died, my husband and I thought it would be better to have mom closer, as we knew the "emergencies" would be happening more and more frequently. So we moved her to a senior living center 20minutes away. Every week, when things are going well, she pays a limo service nearly $200 to drive her over to her old town to get her hair done and occasionally play bridge. When she wins $4 she is so excited to tell me about it. When I offered to take her over there for the same amount of $, she no, that I'm her daughter, that it should suffice she would pay me for my gas and lunch. Later, she said she would think about giving me $50. I told her no, I wasn't interested. We see her every Saturday and go out for breakfast together. Her mobility is impaired but we do alright, we just move very slowly. She is often very sweet and loving, and occasionally very cruel about physical features I have no control over. She is always helpless and lets you do anything you will for her. I have never, in my entire adult life, been able to call on her in the evening about anything. She was always inebriated. I called her my 9-5 mama. She was great during those hours, problem is that's when I was working and the kids were in school. So she wasn't of much use when I was raising my kids. But she was sweet and nice when she was lucid. It just makes me sad. I never talked about it to anyone because I felt sad, alone and embarrassed. Now I just don't really give a damn anymore. That's probably why my sibs don't get too involved either. Honestly, I often just wish it were all over instead of just dragging on and on. Thanks for letting me vent...it really helps to share with others. And best wishes to you, I know it's not easy. Just keep writing and sharing....all of you!

Kackie - Thanks for chiming in. Yes, I have lots of ideas. First thing is, do you have long term care insurance? If you do not, buy it now and shop for pricing. It is one of the only ways your kids won't have to take you, financially at least. Your post summarizes WHAT I'm trying to solve. I need the responses to keep coming. I don't know if it is legislative (I'm not much of a politician), common sense or just down right planning. I think the latter is the key and I want to help others NOT be put in the situation we are in. I'm exhausted too. My Mom drinks too and lives 4 miles away. Thank God. I have NO sibling support and one who hired a lawyer because she thinks I'm spending their money. They don't HAVE any money....that's the irony. She can hire 40 lawyers, will find no wrong doing here. Yes, how long can this go on? As long as they are living and as long as we are willing to take the abuse. I took a HUGE step back about two months ago. I said, "If you want to live independently, then be independent." I have hired car services, meals on wheels, social activities she can opt for ,(she doesn't because she soooo tired all the time because she self-medicates). I'm sick of hearing all the complaining, yet I brought it on, because I moved them here three years ago because I couldn't stand walking into their house that was filthy and smelled like urine. So that's the story. I think it's similar to your story in some ways and how many more are there like us, out there? Thousands. I want to them them. I want to help us.
Thank you to everyone. Please encourage others to post their ONE thing they wish they had known.
xo
-SS

Be prepared for your parent to think that those out of town siblings are" wonderful, and doing the best they can", that they are "busy", since they might still be working ( like youre not!). They often find excuses for their inexcusable behavior! Be prepared for aging parents to become very different from the parents you knew when you were younger. They often become angry, and very suspicious. Saddest of all, while they may pay lip service of gratitude, they often take you for granted and expect you to take care of them.

I didn't know I would get so emotionally involved. I need therapy and cannot afford it.

That if you have school-age children who are active in school, activities and frie.de, you will be unable to be the parent you want to be due to last-minute vs.cellations due to "nana's mood swings". That the pain of doing this over and over winds up in unending guilt and resentment (you toward the parent you are caregiving and the children toward you). That the stress of your children wanting something as simple as having a friend over is sometimes impossible....and when it DOES happen, you will be in a constant state of panic making trying to make sure nana doesn't start masturbating, berating you, swearing, throwing things, etc. *sigh*

I wish I had known how hard the decisions were going to be, and how hard it would be to keep it up once her emotions of love were gone. I have learned that I want my wishes in writting NOW, and to pour love into my family NOW so that if my emotions leave, maybe my family can remember the real me.

It just sort of " fell to me " as the " retired" sibling in town.....it is the most mentally grueling marathon I've ever undertaken...this from an Old, Retired, RN, who is the caretaker for the past seven years of a nearly 91 year old mom since our dad died. She is at once, sweet, funny, at times unkind to me, and an alcoholic for the past 45 years. My sisters rarely come in town to visit, much less to help. It's not fun...I often feel trapped, full of disdain, with no way out. Thank goddess she doesn't live with me. But I often think of just getting in the car and driving away. I definitely don't want to do this to my kids either, and hope there will be other alternatives figured out in the next few years. Any ideas about what we can do ???

Instead of being thankful we took my dad into our home & have provided 24/7 loving care, my sister only concentrated on his money. She never offered to help & was nothing but critical. We weren't close, but I never expected the verbal & emotional abuse she unleashed on me. The other is how rapidly Alzheimer's & dementia can progress :(

That they grow old and frail. Does that sound naive? You're darn right it is. When my parents moved in, they were in their 80's and amazingly healthy and agile. My Dad walked a mile a day, went to religious services every morning, shopped all the different markets and drug stores to compare prices and made friends immediately. My Mom did everything. At 92, my father passed the California driver's license test. He drove on his RI license til it expired. LOL. I had this vision of shopping with my mother, holiday gatherings, nightly dinners where we all told stories, one great big happy family. Intellectually, I knew they would grow old, but emotionally I was totally unprepared for what was to come and no one told me to be ready. It didn't matter if my brother wasn't that helpful; I didn't need him to be and didn't set up guidelines at the beginning. They managed their own meds, did their own shopping, were cantankerous on the one hand and helpful on the other. My grandson had a grandfather who watched Red Sox games with him and taught him that the New England teams were the best. My mother doted on him and they both were there when my granddaughter was born. AND THEN, TRUTH. Dementia, illness, no more driving, being in charge of absolutely everything. I remember when my Dad was still mentally alert and soiled himself. I was cleaning up this proud man, who was once a giant in his community, and he was crying, "I didn't mean to be such a burden." He wasn't. But now there was a new normal and things changed daily until he passed away last year. Not a minute without it's being about his care. Emotionally I was falling apart, but we saw it through. One free year and now my mother is going down hill. Not a minute without it's being about her care. I am exhausted and the fantasy I had is over. I wouldn't change it, but I wish I had been more realistic. It's hard, really, really, really hard.