I'm assuming at one time or another everyone has had trouble with getting help from their siblings. And of course once your loved one is in your home, or you take on the main responsibility of caring for them, our siblings think that since we don't complain too much, that everything is just wonderful.

Oh sure, they feel sorry for you, and when you tell them you've had a bad day, they say, gosh, I'm so sorry, this must be so hard on you. But you still only get that once a week visit, and the phone call everyday asking how our loved one, and of course theirs, is.

If you've had an exceptionally bad day, you may complain and tell them about the worse thing that happen that day, but not necessarily about the whole day. And if you've had a reasonably good day, then when they ask how are they today, you say, oh, not bad.

Well, without going into all the details, I had had it with that. I was tired of my brother telling me how bad he felt for me, and how much he understood, but was never here to do anything. I had asked him sometime ago, just to give me one weekend, a saturday and sunday, every three weeks, to come and be here with mom. Even if I didnt' go out, just to have someone else have the responsibility of making her three meals, snacks, listen to her repeating, her crying etc. I didn't ask for them to stay over, just come on saturday, stay and make her dinner, and then come back on sunday, and spend the day with her then also. Once every 3 weeks, that's all I asked! It was refused, as they couldn't sacrafice that one weekend not to go to their lake cottage. They go all year round by the way. In fairness, they did do it once or twice, but were going to not go anyhow those two weekends, as it was their grandchildrens birthday parties, so they killed two birds with one stone, and of course could only come one day not two.

Well, I finally emailed them a seven page letter. Yes 7 pages! I told them what I do with and for mom from the time I get up in the morning, until afternoon. Now the reason I didn't go to the night time, is that it took me 7 pages just to explain to them what I do until 3pm. (I didn't realize myself how much I really did until I saw it in writing) I gave them a minute by minute, and an hour by hour full description of what I do for mom, and I do mean full if you know what mean.

Boy, when I wrote that, and finally hit send, it was like a load had been taken off my shoulders. Why, I'm not quite sure, but it did.

And guess what? My brother called me and said that this weekend he would be over on saturday around 1pm, as he had to go to his lake home in the morning first, and he would be here on Sunday also. Needless to say, I had to be picked up off the floor. Now of course at first I said ok to him. But after thinking about it, I was actually a little put out that instead of asking me if this weekend would be convenient for me, he again made it convenient for himself, and that although generous and thinking that my letter had worked, there had to be a reason that he insisted on this weekend.

So when I told him that this weekend would not be good, as hubby and I are planning an overnight, and we didn't want to go out and do anything so we could save up some money for our overnight, it came out.

It was convenient for him!! The next few weeks he had plans out there at the lake home, then there would be thanksgiving and then after that plans again at the lake house as he is putting an addition on it to move there when he retires in FEB., had work to do there, and couldn't take any time to be with Mom except for this weekend.

See, I was suppose to make a long story short, but I'm so mad I could burst! But mostly my point is that I think basically him and SIL, finally do know what a day in the life of a dementia patient is like now. I really don't think they realized half of what goes on in a day, and of course, I guess thats my fault for not complaining more and giving them a step by step of my day. And although they did make it for their convenience, they did offer, so I think they may have at least got the point somehow.

So my suggestion to all of you that have trouble with siblings thinking they understand, but still are never around, is to write them a letter. Tell them just one day of what you do from morning until night. You may not be as long winded as I am, so you may get to night. Like I said, I got until 3pm, and then my fingers hurt, and it was 2am and I just had to get to bed.

And make sure you not only tell them what you do, but what you miss because of your loved one. Birthday parties for your grandchildren that you have to send your husband first, and then he comes home so you can go as no ones around to watch your loved one. Dinners out with your husband or wife, as again, no one is around. And cooking seven days a week because going out again is out of the question.

And missing your grandchildrens baseball, football games because again, no one around, so you send your husband so at least the kids know one of their grandparents will be there cheering them on. Tell them everything. Its the only way they will ever get it through their heads that it is "not" the same as having a child around. And even if it was, most of us were 30 years or more younger then.

Put it in writing. If it doesn't help them realize what you really do go through, believe me, you will take pride when you see in writing what you really accomplish in a day without help most of the time. And it sure felt good to hit that send button!

Jackie

Well said, Jackie. I have to periodically remind my brother of all the things I do from the time mom wakes up until the time she goes to bed (and after that, since she gets up in the night and I wake up to listen), not to mention that all these duties are FREE for him but have cost me time alone, vacations, money (since I provide all of the essentials here plus clothing) and my own mental health, since I am on a double dosage of Effexor since this began.

Really, we do the work of a number of people - the nurse, home health aide, transportation service, hairdresser/makeup artist, cleaning person, grocery delivery, cook, housekeeper and more. Most of the time, we don't complain. What we would call a "good" day would, for them, be a horrible one.

I recently verbally told them I need to have a break and supposedly starting next week mom is going to spend an overnight at their house once a week. I asked for a weekend every 2 weeks. We will see if this happens. If it suddenly becomes inconvenient, I intend to tell him that I will look for a place where I can place mom for a weekend every month for respite.

I'm telling you Judy, if it doesn't happen, put it in writing. Email him and tell him details. It will stick in his mind hopefully much better. Thats how I started everything with my brother since Moms been here. Everything is verbal. Well no more. I just hope SIL doesn't change his email address on me. It would be just like her!!

Jackie

Jackie,

Even if it doesn't impress your brother, I'm sure putting all that in writing did wonders for you -- like you said, a heavy load had been lifted.

I understand the depth and breadth of your commitment, and to me, you are one of the millions of "silent" heroes who do what needs to be done despite the heavy price you pay.

Some days we need a little support, some days a lot. May you be surrounded by all the angels you need today.

I just will never understand those who remain idle while someone else does all the work. I was taught from an early age to get off my duff and help out and I have never strayed from that. I remember being young and helping my parents pick my grandparents up off the floor when they fell. I can still hear the horrible crash in my mind when they would fall and the agonizing moans afterward. They lived with us for 22 years and came to us when I was 2 years old. That's all I ever knew really was caregiving. And for that experience I was thankful in the later years.

I'm so glad you let loose on your brother, Jackie. He needed to hear it and you needed to release it from your heart. Whether he does something with that knowledge or not, that is his call, but he can't say he wasn't informed. You can look in the mirror when this is over and know you were there for your mother and did all you could do for her and more. I hope that others are inspired to communicate with their family. Unless a person has walked through this caregiving stuff, they just don't have a clue.

Jackie:
oh do I remember the days.....oh ...........that is one thing I never ever want to go thru again...I tried that several times....what I got told most often was that it was my fault that mom wasn't in a nursing home...that I was "pampering her" (silly me---mom last two years on her own didn't have a car--silly me thoght perhaps visiting, doctor apoints, medicaton and that other inconvenience food)---some just don't see the reality thru their own eyes I guess...they have been a constant thorn in my side for a long time....It does help for some....one of mom's doctors was thinking to himself that perhaps he should schedule a meeting and basically get them to help their mom....the social worker (after meeting with them two times) said wouldn't work they were "checked out" and yes indeedy they were (of course they were all present and accounted for at mom's bed when she was dying...)

Guess I used your post to vent a tad mroe....thought some of these issues were more or less gone--guess they still flare up there ugly little head from time to time..
xxoo
karen

karen,

You just use any post you want to to vent. That's basically what all our posts are for. One thing I do feel good about is that just about everyone has problems with their siblings. Makes my feel like my family is actually normal!!

Thanks everyone for understanding. I don't quite know what I would do without all of you.

Jackie

All the kids were here this week end. I thought about putting it in writing but I just told them. They needed to work out a schedule where they weren't all here at the same time. All day long and all weekend it just to tiring. I got Bill into bed and I was in bed myself before 8:30. I have no idea what time they went to bed. I also told them that I didn't do cooking for anyone but Dad. We'll seel how it goes. Now no one will come.

Karen and everyone else, vent away! At the very least, it makes me feel not so alone with all this.

My brother called today. Jackie, a letter is going to come from these hands, just you wait and see. The mother-in-law is gone back to Florida, but NO MENTION of what day mom will be staying with them. Okey dokey!

What he said was - get this - that my sister-in-law was looking at "places" that mom can go for "day care" and also for places "when the time comes."

Day care was attempted very early and was refused by mom and I understand why. She never was a social person and AD hasn't changed that at all. I could see her enduring the time during day care, but not enjoying it at all and it would simply be a daily battle with her, even on days she wouldn't be going.

I may be totally in denial, but my thoughts on mom's progression (voiced to all family) were that she would stay in her home for the bulk, if not the entire, AD journey if that was at all possible. I do know that it may turn out to be impossible, but I at least wanted to try.

It will be hard, of course. But I assumed since nobody objected that I'd have a little help from them and also from hospice when the time came for that. Seems like that's not part of their plan. Good for me to know now.

I will formulate an email over the week and send it to him reminding him of the agreement that was made and letting him know that time off for me is not optional - even my mom's doctor asked me how much time I'm getting off and when I told him really none, he very sternly told me that it was absolutely necessary for at least once a month to be free of caregiving for a few days. If they aren't going to assist in giving me that, I am going to hire someone to stay with her and he will either pay that person directly or he will reimburse me himself or out of her account (let's guess which it will be).

Coming back to update once more - talked to brother again today and definitely can see that they will not be taking her personally, but continue to look for respite resources for me.

The goal will be achieved (respite for me), but I'm also pretty disappointed in him and my sister-in-law. I have been doing this and working full time - she doesn't even work. Then again, it's not her mother.

I should have expected this, as they aren't people who will inconvenience themselves for anyone else. I've read it here before and I've said it myself. When this chapter is over, I will have no feeling that I could have done more or spent more time with her. He might, he might not.

Coming back to update once more - talked to brother again today and definitely can see that they will not be taking her personally, but continue to look for respite resources for me.

The goal will be achieved (respite for me), but I'm also pretty disappointed in him and my sister-in-law. I have been doing this and working full time - she doesn't even work. Then again, it's not her mother.

I should have expected this, as they aren't people who will inconvenience themselves for anyone else. I've read it here before and I've said it myself. When this chapter is over, I will have no feeling that I could have done more or spent more time with her. He might, he might not.

Howdy,

I am so sorry your brother is being a jerk

I only had one brother and he died before mom needed extensive care, so there was no one for me to share the load with. Sometimes I resented that, but most of the time it just made it easier because there was no one else to answer to, or make explanations to............and after reading how so many siblings avoid contributing anything, I guess I really had it pretty good.

At the very least your brother should help pay for respite care so you can get some much needed down time. I suppose it would be too much to expect him to pay for it all...................

Judy,
Not only do your mom and mine sound related in there stages, and their personalities, but our brothers and sisters-in-law sound like they may too. Always for their convienence!! Gee, too bad our mothers didn't do things at their convienence when these people were children. They'd probably be on the streets now instead of all the nice things they have.

How selfish of your brother and mine and our ESIL's (that stands for Evil sister in law) to be all about themselves. Your's wants to put your mom in daycare, and mine will be with mom, but also with stipulations. He will come on weekends, but not stay over, and Mom can't stay there has they have stairs. But the weekends are what he chooses, not me, as he has to go to his other home on weekends, and God forbid I disturb his plans and he may have to break them with his friends or other things.

Plus he will come on Saturday, when his wife decides she can get ready, and then come back on Sundays, of course which they will probably go out for breakfast before they come. So who knows what time they would get here. Thank God my sister has enough sense of responsibility as she will be staying here in a few weeks overnight so my husband and I can get away. And she has done this for us more than once. But the other two, no way!

Make sure if you write that letter, you give a detailed description of all the things you do, but also be patronizing with them. In other words, eat Sh*t. Tell them as much as your understand their postion, whatever it may be, that they also need to understand yours. And under no circumstances for the few days they will have her, that you will allow them to put her in day care. Geez, you could do that to get some respite, and you are choosing not to. And as far as I'm concerned, you watch your mom, your the boss.

I would also challenge them to come with you one day to day care and stay there and watch what your mother goes through in the day care. And challenge them to tell your mother that thats where she's going before she goes so they can see the reaction that she has. And if they won't keep her at their home, even one day, ask them to come over your house one day, and leave them with your mom so they can actually see what a day is like in a person with AD. Actually, why don't you see if you can get away for a few days, and have them come to your house instead of your mom going there. Tell them it will be much more convienient for your mom, you, and for them. And if they are going to help you, then it should be somewhat your way. (Although that didn't seem to work with my brother)

If you want to see the letter I wrote, keep in mind its seven printed pages, let me know and I'll pm it to you or pm me your email address and I'll email it to you.

Of course after the letter to bro, he has been more attentive. You know, Oh let me know what I can do. (especially since all this passing out episode) But things are still at his convienence. He asked me yesterday if Laura, my Granny Nanny was going to be coming this week. I said yes, she is. He said, Oh good, because you'll need her more this week since moms been having those fainting episodes. And what's funny about that is that he got layed off on Friday, so he and ESIL are now available for daytime. But I guess again, it's not going to be convienent for them.

So although putting it in writing did wonders for me, it may not really do much for them. And I am at the point, where after this, I will never ever ask him and ESIL to watch mom again. Unless they say, gee, can we come over and help and what day or weekend would you like us, I will never again ask. And one day I'm sure that will be thrown in my face and they will be telling people that they always offered, but I never asked them. But I will know the truth, and I will be able to face anyone when this ordeal is over. I wonder if they will? My heart will only be heavy at loosing mom, but not from not doing anything. I hope they will be able to live with themselves one day and have no regrets. Because that would be a terrible thing for anyone to live with. And that's another thing you should put in your letter.

I'll be honest with you Judy, your probably better off if you do know someone that your mom likes, to do that. And absolutely have him pay from your Moms money. And don't just get someone for a weekend. I started off twice a week with Laura, and got mom used to her first. And now if my sister is not available for us to go out even for an evening, Laura will come and sit with Mom. I handle Moms money, so I don't have to worry about that. I pay Laura from moms money, as there is no way I could afford it otherwise. But I would also put that in any communication you have with him that you have to have someone at least a few time during the week for you to get to the store etc. And please don't ask him, tell him. And tell him that he will be sending her the check, and you will record, or have her record the hours. This way he won't think you may be using the money for anything else. Be kind, but be firm!!!

Keep us updated, and don't let them talk you into anything that you know is not good for your mom or yourself.

Jackie

Thanks for the votes of confidence. I have thought about this all day (and sorry for the double post, but the board was wonky when I was on earlier) and I am going to look for someone myself to stay with her. I'd rather pick the person.

I really should have known things would go like this though - he talks a lot but there is never any action. Last year he insisted that I not call the garage door repairman and that he would fix the spring on the door. Guess what's not fixed still?

We had a faucet problem in the kitchen (mom has turned the faucets the wrong way so many times, she stripped the hot water faucet handle) and I called a plumber to put on a new faucet. He about had a fit and said I should have called him and he would have come over and done it. I bit my tongue when I felt the words "when, next year?" come out of my mouth.

I'm sorry Jackie, but I started chuckling to myself when I read your brother and SIL were both at home during the day now. My brother works a very flexible schedule and is at home much of the time during the day. You kind of wonder if it ever crosses their minds how mom's doing....

Judy,

Hey, no problem with the chuckle. I do it myself when I think of him and ESIL both home enjoying breakfast, lunch and dinner together, and of course my brother cooking it. And that they are going merrily along enjoying life. If I don't chuckle, I will surely murder them.

And oh, it crosses his mind alright and there it stays!

I reread all the posts of yours today, and realized that you also work full time. How the heck do you manage? God bless you my friend. I can't even imagine having another job beside taking care of Mom. God, your brother and ESIL are really non sympathetic. You have two jobs, he has one with a flexible schedule, and does your ESIL work? Who takes care of your Mom during the day while your working? I guess not ESIL huh??

At the end of our journeys with them, we can be proud of what we've done. Regretfully, they wont' be able to think the same way, and that's really sad. But if I know my brother, at her wake he'll be telling everyone how difficult this was on all of us!! And when I hear that, then I know I will have to bite my tongue one last time. But after that, it will never bleed again.

Jackie