Why so many negative posts and replies?!

Steph, before you judge all of us too harshly, consider this:

Not all of us have had great relationships with the person or persons we came to provide care for in their later years. Not everyone had Ward and June Cleaver as parents, or the Brady Bunch parents, if that gives you a better frame of reference. Many - and I mean, MANY - of us had abusive parents who were alcoholics, physically / mentally / emotionally /sexually abusive to us, or abandoned us only to come back later, requiring care when everyone else had abandoned *them*. Many of us only provided care for our parents or loved ones out of a sense of filial duty.

So please don't be so dismissive or high-minded about this. You will need this site and the advice offered here in the months and years to come. Trust me.  Don't bite the hand that feeds you, because you're going to need it later.

Those who advised you not to become a caregiver were only trying to keep you from experiencing what many of us already have been through. It wasn't done out of spite or mean-spiritedness, and it certainly wasn't intended to evoke this kind of reaction from you.

I'm sure most of us are happy for you that you have an "easy" caregiving job....so far. Right now, things are simple for you and your grandmother. That's great, and we're happy for you that it's that way. But please don't belittle or attempt to shame those who have had a much harder row to hoe with their loved ones.

Ah, the honeymoon stage! So many answered negatively because so many have been there, crashed and burned. Most of us wouldn't have understood the nay sayers either when we began, or we would have thought maybe them, but certainly not us. I hope she continues to be a blessing to you and that you never, ever experience the flip side of the caregiving coin.

Lol! Why so many negative posts and replies? Lol - still!

Well, I guess it stands to reason - that so many of us have had a negative experience.

You keep on posting - maybe we can learn something from your positive experience. OR - maybe you'll come to see what we've all been talking about. Seriously- I'd be very interested in hearing how things are working out for you - say, six months from now.

Wonderful that it is working out for you! You ARE one of the lucky few. I hope it stays as good as you described.

But, shame on us who complain? Not sure you should be lecturing anyone on here. So best wishes to you and don't be judging the rest of us if you don't want it done to you.

This site is also a way of airing our problems and finding out that we aren't the "only" ones. Glad so far it's working but I just want u to be aware that Grandma will get worse. It will be like taking care of a child, dirty pants and all. There are stages she will go thru. Some may be combatant. If you can deal with this than you have found your calling. Me,

Cont: I couldn't and still can't. I haven't done well in my Mom's journey. Maybe because this all started when I was 65 and retired. Being the oldest and always the child who did everything. Now I am dealing with Medicaid and transferring Mom to long-term care. Tired of doing it all.

Exactly. Ditto above on all responses. Many of us are dealing with the end stage of any dementia - and it can be very, very brutal on our body and on our soul. Perhaps your calling is nursing. There's nothing wrong this. I commend you for this! But for many of us, it's not our calling and we do the best we can because we love our disabled elder and figure out a way to keep trucking along even though we've had it...over and over. Your Grandmother is in the very, very early stage of dementia so she'll be delightful company because you've stated she's still very much self-sufficient and you're just there to fill-in-the-blanks. Let us know how you're doing when she's in the middle and advanced stages because this will be a night and day difference. Also, because Grandma is not too bad yet - you really should hire an extra caregiver on a weekly basis or whenever you can afford to do so - so you and the husband can enjoy the honeymoon phase and have a life. Why get married and immediately take on the role of the homebound middle-aged-plus caregiver? Enjoy your freedom as much as possible.

Let us know when the novelty wears off. May Grandma continue to be a peach even then; and we will be here for you; and this up front is my solemn promise that I will never, never let the words "told you so" pass my lips. I mean it, I'm not being snotty at you.

Just curious though: so what kind of advice were you expecting, given you're confident you've got it all covered? 101 ways to make the same story interesting? Watch Teepa Snow for the state of the art in dementia management.

A follow-up: If you haven't already done this, you should take a tour of a nursing home for dementia patients - as soon as you can. This isn't for you to put Grandma in the home. This for you to see what you could be potentially dealing with - so you can plan for backup plan in case you've decided you can't do the caregiving role anymore. To the nursing home coordinator, you just act like you're touring the place for your relative. Just give the minimum details needed for you to get a tour of the place. Try to visit a nursing home with different levels of care. Look at the whole picture while you're there. I understand you love her. We all love our elders. I'm only speaking for myself, I never experienced a family member with dementia (vascular) so I had no idea what to expect. I heard and read of elders developing dementia but I didn't truly understand the impact - on me - until my mother's decline. It's not a pretty picture. Trust me. If you tell your husband that you want him to accompany you on a tour of a nursing home - just so the both of you can plan for a back-up plan now, like working with the attorney to save more money for hiring more in-home caregivers or working towards getting Grandma qualified for long term care policy to ease the burden on both of you, and he firmly says no or makes excuses - then you've got a much bigger problem. Sorry to be blunt. There's no reason why you and he can't explore a back-up plan now before Grandma becomes the person you don't recognize now. Nursing homes are very, very expensive when you don't qualify for long-term care which is my mother's issue; she doesn't qualify due to a pre-existing medical condition. So, I have in-home caregivers weekly for my relief - no for my sanity!

Ah to be young and know everything. Life not sullied by reality. You and your grandmother are in a moment in time, as we all are. While things and time aren't static they do follow a predictable pattern. Most of the posters on this site have the advantage of a long view back. Hopefully you'll have that one day. Shame on you for asking for people's time to give you a heads up and then coming back and showing your ignorance in such a disrespecting manner.
But pardon me, I have to remember that you are young, maybe a little younger than your years, and don't know what you don't know. I hope the uncle is comfortable and perhaps you can get off your duff and take GM for a visit. While you are there, think about how he got to where he is today.

This post reminds me of a facebook post that blew up the internet several months back. This was written by a new mother but the tone and lack of awareness are similar

http://www.scarymommy.com/sanctimommy-with-one-2-week-old-child-cant-understand-whats-so-hard-about-parenting/

Lol - still! 
97yroldmom - I was thinking the same thing. To be young and bullet-proof again! I was the worst at that - no one could tell me anything, for I knew it all! Then somewhere in my golden ignorance- life began kicking my butt around the block a few times. I look back at my former self with a mixture of embarrassment, amusement and nostalgia.

But one thing I can say - I never had the arrogance to shame my elders when they tried to give me the benefit of their considerable experience.

But much like Churchmouse- I solemnly swear to never utter a single "told you so".

Steph - when you do need the advice from us cranky, old, naysayers - please don't feel embarrassed about coming back and asking. None of us would wish this joyride through h*ll on anyone else and we will be here for you.

Steph, just a suggestion - when people with considerable experience are trying to educate a neophyte, it's best to stop and really listen to what they have to stay. When you needed a dentist or hairdresser, you asked other people for their input. When you bought your car, you did your research. That's what this forum is - a phenomenal source of info from kind people who genuinely want to help you. With this many people telling you the same thing, a little voice in your head should be telling you to listen, even if you don't like what they're saying.

Steph - this is not negativity - it is reality.

I suppose there's not much that I can add, but, I sense that there are so many negative posts, because the caregivers are often sad that they are caring for a stranger. There LO has disappeared and the person in the bed, wheelchair, etc. is not their mom, dad, spouse, cousin, anymore. Plus, they are exhausted, because around the clock care of a full grown, incontinent adult is taxing on the body.

Then, there's the uncertainty of the future. The human spirit may be resilient, but, when our spirit is beaten down year after year, it does take a toll.

I understand, everyone. I'm sorry if my "shame on you" comment was rude, it wasn't intended that way... I was in the heat of the moment and was upset that most of you told me to turn back now and run away when all I want to do is give the best care I can to Grandma. Perhaps I have a lot to learn. Thank you for all your kind words and wisdom. I'm not one to ever say "I know it all" or "this is a piece of cake." I understand that most of you have done this for many many years and my intentions on this site IS to learn from you all and to listen, even if it's hard to hear. It's true that I'm young, naive and that Grandma's dementia isn't so bad at this stage. I just could really use all the hope and positive words that can be given. I don't mean to sound arrogant or that I have anything figured out (because I definitely don't) but optimism is my coping mechanism. So I'm sorry again, and thank you. I know I'll need you all in the future :)

Steph -

thank you for coming back and posting again. I'm glad you understand - but it's true you have much to learn yet, and I don't say that to be harsh or demeaning - it's just fact.

Please keep coming back and learning. All of us have been there in varying aspects. As I mentioned, please keep in mind that not all of us have had it as easy as you do now - in fact, your situation with your grandma being so easy to care for is usually the exception, rather than the rule. Enjoy this time with her while you can. Aging and dementia are not reversible and they do only get worse - not better.

Steph,
This journey is constantly changing so just keep watch for where you need to adjust and adapt. In time, you'll need help so don't be hesitant to ask. You'll need respite time so start looking at how to achieve that, including family members.

"Don't judge people if you haven't walked in their shoes"...

Unfortunately for everyone on AC we've worn those shoes.. They get tighter daily!

Hi Steph, I'm glad that you re-posted as well. When mom first came to live with me my situation was much the same as yours. It wasn't so bad. I can handle this. After the first 3 years, that is when the decline really started and has just continued. I is excruciatingly painful to watch someone you have known all your life go away, right before your eyes. The changes that take place are permanent changes. The inability to do the smallest tasks, the 24/7 need to have someone right there helping with absolutely everything. The incontinence, the behavior changes, the sleepless days and nights, the agitation that often can bring out such anger. My mom never swore or hit a soul in her life. But, I have learned she has quite a right hook on her!
Enjoy your time with grandma now. Educate yourself on what is coming down the road. I learned that it was easier to deal with the downhill spiral with some education and heads up on what to look for. This forum has been a wonderful source of education. Often times not easy to read and take it, but necessary.
Honestly, now is the time to put routines in place to take care of yourself and your husband to do the same. By doing that now, you can arm yourself with the routines and discipline of self care and it will make the journey with grandma slightly easier. But more importantly, you will be taking care of yourselves so that your life after caregiving will be the best it can be. A lot of us on this forum are older than you and your husband, so you do have youth on your side. But don't let that deter you from taking the steps to take care of your own mind, body and spirit. There are a lot of lessons to be learned on your journey. Embrace them, learn from them, and continue living your own life. That will require outside help be it family, friends or hired help. You can love and take care of grandma while continuing to live your life. No regrets to have while doing it. As difficult as it is and it is going to get very difficult, I am grateful for the opportunity to give back to my mom. I will be there till the end. No matter what. But I am absolutely taking time for myself and nurturing my own mind, body and spirit. That has made a world of difference. So, so, so very important. Take care of yourself so you can take care of grandma.

I personally am sorry for seeming so negative but pls don't shame "us" it was all cake and ice cream AT FIRST however each and every person is different in how they progress in dementia and WHAT KIND matters like I said it does not get "better" it may be SLOWLY but things get worse my dear most of us don't judge but if we haven't been there or done tht we would not be HERE because either we chose to or like a previous post they had nobody else to care for them and felt it was their duty I hope she stays sweet and kind and manageable till it's her time but judge not by our comments you asked we told and honestly you can save yourself from alot of stress and heartbreak by not being a caregiver I wish you the best and keep us all updated on how you and granny are doing don't be afraid to come here to "b!tch it out"!!! We are here girl!!!!!!

I see in you and your wide eyed optimism myself 6 years ago.

I want to keep you from the mistake I made.

It isn't going to be unicorns farting rainbows.

I hope this does work for you. I hope you don't have the same road to walk that many here have spread.

I just looked over your other thread and thought the advice was very good. I didn't comment myself, but I would have given the same advice as everyone else did. Mainly what I saw was they were looking down the road at things that may happen. Mainly it because the people answering you knew more about the potential snares along the road. It may be that your husband's grandmother will be great and living in her house will give you all a chance to form a close family. I hope that you and your new husband will be sure to reserve time for yourselves to nurture your marriage. There are caregiving companies that can come in for a week or two if you and he want to go on a vacation alone together. If everything stays good, it can all work out. Let us know how it is going. We're old hands at this, so someone may have advice to help get over rough patches if they happen. Good luck.

Steph, when I read your description of what is going on in your life right now I thought, "Well, she is not really a caregiver. She is simply sharing a house with a nice old lady." I would gladly have done that with my grandmother. I don't mean to dismiss what you are doing, but, my dear, you ain't seen nothing yet! And I hope this continues for you for a long time. And I hope very strongly that if/when it becomes more than you can handle you and your husband will find a solution that provides GM with the level of care she needs.

You may have found your true calling! And after GM is gone perhaps you will go on to make care of the elderly your profession. It is a field that needs caring, experienced people.

Keep in touch here. We really are on your side!

Stephanie, you said, "I really feel like this will take a huge toll on my personal life and even my marriage." And the preponderance of responses confirmed that feeling. Not because we are negative people, but because we've been through it. Going into this with your eyes open seems useful, to me.

You left out some important information in your original post. Was the job you left putting the filling in jelly donuts, or were you on track to become vice president of a chain of bakeries? You've been married a year. Do you intent to start a family? Both of these are factors to consider. We should have asked those questions in the beginning.

Steph, my comments were not intended to judge you. I have been where you are and although I don't regret my decision in caring for both parents, I just wished my parents and I had planned better for this time in their lives. What do your parents or whoever you consider a parental role model think of your decision? Your response reads that all of us are throwing darts at your humongous balloon that's shaped like a heart because you are truly very compassionate - not many 30-somethings are willing to do what you're doing. It takes that special touch, really it does. At age 32, I left a high-paying technology job with a well-known national consulting firm. I'm an only child with no other family in the country to help me. I planned to become a partner at age 42. I'm now 45 years old - and am still caring for my vascular dementia mother - who can easily live another ten years because it's been a very slow, gut-wrenching decline. The thought of this makes me vomit. I've already decided she's suffered way, way too much so the next time she gets a fever, I'm putting her on hospice and letting nature take it's course - I just hope it's a quick death. Her future now is not good; just more suffering from this or that medical condition. Our State doesn't have Death With Dignity otherwise I would petition to end her life pain-free as she's had way too much pain. After my father expired but before her actual decline that led her to being homebound, it was appointment for this, appointment for that. There was simply no way I could go back to a career I loved because it involved a lot of traveling. I now work from home for my retirement. You mention Grandma needs insulin. My mother has elevated blood sugar - not diabetes level yet - but this disease runs immediate to her family so it's always been a worry in the back of my mind that she'll eventually develop this disease. Medications can only keep her blood sugar stable for so long. She screams at the top of her lungs when the sugar is elevated because this affects her brain chemistry. She screams because she's lost her verbal skills due to motor decline from vascular dementia - but is fully aware of what's going on around her and knows me because she doesn't have memory issues - yet. She screams whenever I or the home health nurse touche her. I have to wear ear plugs while in her room to keep my composure. She is bedridden. She wears adult diapers that have to changed every 1.5 to 2 hours and all this doesn't reveal her other issues that have kept her permanently homebound for the last four years. That creature in her body - is not my mother. How will you - not your husband - just you fund a retirement plan? The money you're being paid by Grandma, how much of it will go into a retirement plan? Has the attorney talked to you about setting up a retirement plan? We're all living longer. We need money to afford good healthcare when the time comes. You're geting paid, right? Why don't you take classes now to prepare you to work as a Registered Nurse? Many of the prerequisites are online. You'll be getting the hands-on experience as you're caring for Grandma. Or you can hire a part-time caregiver for you to do your nursing internship at a local hospital. After you graduate, you can work part-time because there's a lot flexibility with nursing - a good hourly rate - a very good hourly rate - with nice benefits! There's also flexibility in using an RN degree in other areas, like sales (which you will be very good at, by the way, based on your bubbly writing), advocacy at the State level, education, research...multiple crossover opportunities. With the right experience, you'll always have a job. Use the time now wisely to build an actual career with a retirement plan (and benefits!) while you're filling-in-the-blanks for Grandma. Just don't be babysitter unless you're expecting a very massive inheritance and never have to worry about money. Keep us posted.

Steph,
What did you do before marriage - did you work?

MsMadge, Steph said in her first post, on another thread she created, that she had given up her full-time job and moved into his grandma's house with her new husband. We asked what sort of job but Steph has preferred not to say, as of course she is entitled to do.

Steph, it is a blessing that you have a phase of caregiving that is pleasant and companionable.

Be mindful not to let this year be the benchmark of what granny-in-law is and what she needs. Dementia only goes in one direction. Mild becomes moderate becomes severe. Physical and hygiene challenges arise.

If G-I-L is incontinent and belligerent 5 years from now, don't resist making a new plan (that might involve less of you) because you remember how sweet she was. Make decisions based on now -- whenever that now is -- and the future.

This means your future, too. Not just G-I-L's. You & hubby might have kids. .... hubby might lose his job ...... one of you might become disabled due to an accident or personal health development.

Plan for your marriage, your family and your future. I find it remarkable that hubby's family couldn't find anyone else to take on such an easy job with such a pleasant care-receiver......or even share duties with you and hubby. Don't let the novelty of "my new family" overshadow self-preservation.

The in-laws got quite a bargain when you stepped up to the plate. Have you asked yourself why no one else in hubby's clan was willing to take this on? Keep your eyes and ears wide open.

As I said before, do not hesitate to modify your plan as time goes by. Best of luck to you. Make every effort not to lose sight of yourself.

"I'm new to the caregiver thing and I am stunned that so many people told me not to do it. Yes, we're being smart and responsible with everything, we have a lawyer and we have a caregiver agreement signed. We're going to be paid for the care we give her, so relax everyone! " In your other thread you stated that you were the sole caretaker. How much does your husband do?

Are taxes withheld from your pay? And is it competitive?

(I hope the two of you are socking away lots of money, so you'll be able to move when things get more difficult.)