I am lucky enough to work from home. I do medical transcription, I've worked from home off and on for a number of years. When I moved back up to Michigan from Florida, I got a job in-house at one of the hospitals, but when I saw mom wasn't doing well about a year before she was diagnosed, I made the decision to go back to doing this from home, and I got a job that basically consists of checking other transcriptionists' work.

Also luckily for me, the job has benefits, so I do have health insurance and all the other stuff I need for myself. The work is all on the computer, so I can have a job up on my screen and still be able to listen and/or walk through the living room where mom watches TV to check on her. She eats before I start work (I work afternoon shift) and really for her, that's her morning time. She gets up around 2 or 3 p.m. and I start work at 4. I work until midnight and we are up until around 2 a.m. I work meals in on my breaks and I clock out on bath nights, give her the bath and work a little later on those nights (or start a little earlier).

Like I said, I'm a very lucky person because if I wasn't able to do this, I would have had to stop working completely to take care of her and money would be even tighter than it is. I am also pretty fast at the stuff I do, so it's not affecting my ability to produce the number of jobs I'm expected to do every night.

Judy,
Although that is so nice that you can do your job at home, you really do put in alot of job hours. Plus the job hours with your Mom. It has to be hard having a job at home with an AD patient. I think thats where your brother probably misunderstands. He thinks having a job at home is a piece of cake. And my brother I'm sure thinks cause I'm home all day, and just have mom to deal with, another piece of cake! If they only would experience it for one day, just one full day.

Jackie

You know whenever I hear one of my sisters say our family will never be the same (more so since I WON'T do anything with bro) I keep reminding her we never were funtional as a family--over the years it was always just me for mom--POA (sister who made that remark) never went to family things--heck she barely did the mom thing--only really came to mom's defense when mom was in psych ward and in nursing home...then wanted mom to live forever...
I still don't think I would be anything without this place or others to vent...It did help and still does!
karen

I'd like to share my 'missing sibling' experience and how it grew over the years into a terrible mistake I made in caring for my mother.

I wrote 'the' long letter to my only brother, followed by updates, always leaving me hopeful. But not one single thing changed, except me.

Over time, my emotions got the best of me. I wish I could have gone from zero to acceptance when it came to him, but I didn't. We were always a close family, always did for each other. We all held hands through Dad's cancer and death. Mom and I needed him and he's STILL not here? I couldn't believe it! It hurt. I got sad then I got mad. It all ate on me, ME--not him--far too long.

Who knows, maybe at that time I was just plain mad at AD. This monster was taking 'our' mother and big brother wasn't here to help me fight it! Finally came, okay then, to hell with you! I can and will fight this alone. Mom and me together, every step of the way. See ya at the casket. MY tears will be clean. Was this acceptance? I don't know, but for a long time that who-needs-you attitude gave me strength to carry on.

But there was no peace with it!

I was devastated beyond words when I realized what MY having no peace had done TO Mom. Whatever 'I' felt about 'my brother' showed in my responses--like a wet dog shaking mud all over "our" beautiful, innocent mother missing her child. Where is my son? ...That's what I'd like to know. Does my son come around? ...Haven't heard a word. OMG, what was I doing? Where was HER peace in that? Countless times a day I put HER feelings first, pushing my own aside. How did I not see I wasn't putting her feelings first with this? My heart sank on fire in shame. Deep shame!

I tried to make up for it with the 'lies' for her sake. He called!...He came!...He loves and misses you!...You raised him a fine man! But time is against me. She doesn't ask for him much anymore, but is she still seeking him in episodes? Somebody help me! I can't find my son! Somebody took my boy! Oh, my son is dead!

My tears are not clean. Am I the one who "took" her son by not REASSURING his love for her early on? Yes, HE became distant, but I am her caregiver! I should have provided the comfort she needed--to FEEL his love. No matter what. "Our" mother deserved that--honorably!

I took my brother's absence way too hard. All I can do now is share this horrible mistake in hopes that other caregivers can find peace, for our LO's sake!

Oh sweetie, please don't take the blame for this. You could have told all the fiblets in the world and I doubt it would have made a difference. He is not there and she knows it. It was his choice and is not your burden to bear.

Sames u,

Boy, does your situation sound like mine. Close family, stuck together when my dad was sick, etc, etc.

But one thing I really did do is made sure even after the episode with Sister in law, that I did eat you know what. As much as I hated to, I knew I couldn't ban brother from the house. As much as I really really wanted to, as I figured, what the hell, it wouldn't bother him, he doesn't come around that much anyhow. Because of mom, I stopped myself. But I have to tell you, if it wasn't for my husband, my reaction would have been the very same as yours.

I could have cared less if he had ever come here again. I am mad, hurt, frustrated - you name it, I have been them all. But you know what? What you did, and what I do are not that much different. Even though my brother comes around once a week and I let him, Mom still asks where he is and why he's not here much. And of course, I still have to lie and make excuses for the dumb jerk.

So what you did really probably wasn't going to change the situation much. Your Mom would still ask, and you'd still have to lie, and the visits would still be far and few in between. You know the saying about a daughter is a daughter for the rest of your life, but a son is only a son till he takes a wife? Well, I blame much of my situation on that. If my sister in law would use her brains, this situation probably would not have to come to the way it is now.

When my mother was younger, she did so much for my sister in law. She helped her with cooking as a new bride, she watch her children many times, she even yelled at my brother when she saw he was getting on her back about too many things. My sister in law use to say that she got along better with my mother than her own, and that my mom always made her feel like a daughter from the time she met her. Yeah, right! So much for being "just like a mother to her" huh?

Thank God "her" mother is gone. Poor thing would have had a big surprise in store for her.

So don't regret what you do or what you did. Don't think it would have changed much. You're a wonderful daughter for what you do, and you and I and everyone on this forum that either cares for or is an advocate for our loved ones will never ever have anything to regret. Your tears should be as clean as a fresh rain. It's up to him, as it is my brother to do something about any situation that may be left. If they don't, then God help them live through it when our loved one dies.

You're doing good sames u, you're doing good. Don't doubt yourself anymore. Your mom has you, and although she misses her son, she would anyhow. Mine does and he does come for his visits. So don't beat yourself up with this anymore. Make the rest of your mom's time left with the subtle lies as pleasurable as you have been. You, in my opinion, did not make a mistake in your decision. You did what you could to make your life a little more bearable. And if you hadn't made it bearable, then you wouldn't have been able to take care of her in the way you are now. I have to constantly fake it with my brother and thats really hard. I have to keep saying that I understand when he can't watch Mom cause his weekend away is more important. Or that he can't visit cause he has to fix something in his house first, or take his wife to therapy, because God forbid she can't drive yet. So many things that my tongue is sore from biting it.

So don't think it would have been too much better. You and mom are doing ok. Thats all you need right now.

Jackie

Thank you both for your inspiring words. I really try to not let the guilt sneak in too much anymore because I do KNOW I can't blame myself. It does no good. Later in the day, after I posted, I wished I could have gone back and changed it. It sounded so glum. Obviously the guilt is still there since it came out, but it's not as bad as it used to be. I really do try to tell myself, like Mom always said, there's a reason for everything. This was a lesson learned; we go on stronger and wiser for it. I do try to REPLACE that guilt with a little pat on the back, at least now and then.

I think, Jackie, when I saw your post I wanted to just ~ shout from the rooftops ~ don't do what I did! It seems so long ago I wrote my brother. Little did I know when he didn't come through after my numerous attempts I would soon be in big time burn out then go through what I call the great depression, you know, all those caregiving stages we seem to go through. Looking back I seemed to channel it all through my brother. Well, I don't know beans about psychology, but I really should have gotten some help back then. (sigh)

That's what's so wonderful about having this kind of support group, to be able to talk things out, have the support we all so desperately need. Back then I was flying by the seat of my pants! No internet, no books, no help, nothing! I've made lots of mistakes that I will share in a heartbeat if it looks like someone might be tripping down the path I took.

Anyway, as far as being here, y'all bear with me, please. I'm finding this writing things out is hard for me. I'm just in awe the way you can express yourselves. I hope if I ever come across in some kind of questionable manner, you'll point it out to me, okay. I want to be here and NEED to be here. I can be a moody thing. Friends say, dramatic at times. I really don't mean to be. So, I give you all permission to keep me in line.

(I see in my post where trying to emphasize some words down right hurt my eyes with all the quotation marks! Sorry. (Lesson learned.) Hey, at least I was using my little finger on the subject of my brother instead of the other one! ha)

In caregiver love,
Sam

sames u,
I'm caring for a spouse and not a parent, so I'm dealing with sibs and not his children. Bill has three brothers and one sister. The only one I have talked to since March is his oldest brother. He and I talk to each other weekly. He is caring for his wife who is physically ill and in and out of hospitals. Neither one of us can get out to visit but we call to check on each other.

The last time I spoke to his sister was in March when I told her that Bill was going into hospice. Not a word since.. The youngest bro did ask our daughter where her dad was. They don't know if he is still at home, in the hospital or in a nursing home. I think, and I'm not sure since I haven't talked to them, but I think his middle brother is showing symptoms of AD.

I don't go out of my way to invite any of them here. They all live within 20 minutes to an hour from us. But if they called and ask to come over I would say come on. I might even offer them a cup of coffee.

Bill will ask where his oldest bro is or where he went, because he believes he was just here, but I don't think he even knows he has three other sibs. I know he couldn't tell you what their names are. But I can't judge by that because he can't tell you what my name is either. He has enough trouble with his own name.

I guess what I'm trying to say is, just take care of Mom the best you can and don't worry about what your brother does or doesn't do. Some care and want to help, others care but don't know how to help, then there are those that just don't care and don't help. The last group are the ones who will be crying the loudest when it's over.

Just take care of Mom and Yourself. You're doing great.

Sam,

Your response didn't sound glum, it sounded honest. And although I also think that I have come down to the reality that nothing will change where my brother is concerned, every once in awhile it sneaks in on me. For some reason, Saturdays especially are the hardest. I think of him doing his own thing, being with friends, relaxing, having a few drinks, and boy do I get mad! No, not mad, more like jealous! And by Sunday night, I'm back to "Jackie, just let it go". And I start giving myself that pat on the back that I finally realize I really do deserve.

And Sam, don't worry about getting on that rooftop (we really can't afford to take the chance of coming down the WRONG way) I'm at the point now with brother that what is is. I'm tired of hinting around, I'm tired of the argueing, I'm just plain tired. I have welcomed him in my home, and I really do love the guy. But my tongue still just continues to bleed, and I have just accepted that it's going to be this way until Mom takes her last breathe.

I too was starting to go into that depression stage. But being on here with all these wonderful people makes me realize that I have to be as strong. And that most of us, in fact it seems all of us, do it all by ourselves with little help from our families.

As far as writing things out, oh boy, do I know what you mean. I used to sit here in awe at the way all of our forum friends could not only express themselves, but give such wonderful advice and not have it seem judgemental. The last thing we need is to be judged. So don't worry about moody or dramatic or anything that you think we won't understand. Believe me, we've been through it all, and continue to. And you quotation mark all you want! We all do it at times to really get out how we feel. Go over some of the other posts, and believe me, you will see quotation marks, smiley faces (and some not so smiley), and many of us like this response right now that seems like a book instead of just a response.

So don't worry about us keeping you in line, as many times you'll have to keep us in line too! And that finger thing, bet Winslow could come up with a nice clean cartoon and joke for that one. Wasn't that just so funny about the Granny Nanny's??

So nice to hear from you again.

Jackie

Sam:

What I have found in the past/present....that sharing these feelings does help get things worked out...it is beneficial--trust me from experience--

I have to take my ladies out but I have experienced the same as you. Mom passed on the 11 of August...from March 08 thru her Aug--all of a sudden others were in her life--(never when she was on her own--I was constantly being called her "savior" [font=Courier New] [/font]which was very very offensive to me due to my beleif that there is only one Savior and am not Him....--I was yelled at for helping mom --- I was told poa would buy groceries (since silly me I allowed mom to foolishly spend to much money on food )-- half the time she didn't---there were times when I was going thru that good old "caregiver stress" illnesses (still dealing with aftermath of some)--I e-mailed sibs--requesting them to buy some food for mom...got stupid e-mail about what meds she was on????? and if she had a flu shot---by the end of the week when I was finally up to going to her house---her cupboards where BARE---NO MILK or ANYTHING....at her funeral I wasn't allowed to offer to much---poa did it all (thru out all she said was she was dealing with demons and issues that she had of mom)--her and bro all the time doubted that the demntia and moms sundowning were related --- they choose to believe mom was just "plain mean and nasty" my sil even went so far as to tell the SW that mom showed "schophrenia" (sorry for misspelling) --- which was way out there-- I still have to tell poa that MOM DID NOT HAVE IT.....poa wanted to work in nursing home to help "understand" the disease...(I didn't need to work there to know how to look up...)

yes issues remain....yes at times I still harbor resentment over issues amongst the sibs...it fades a bit but doesn't go away...just made me more determined to be mom's voice/advocate---even the SW didn't think a "family meeting" would help with pos and bro---she KNEW THEY WERE DONE---she was very surprised that they actually were with mom during her hospitalization since they had checked out--told her it was because others were there--only for the public...


anyways..need to shower--ladies await

xxoo
karen

don't beat yourself up over feelings----this disease creates so many different things---it is helpful to find others who go thru it---most here have same or close to same expereinces that you do encounter---especially the family issues that creep up