I hope you will forgive what I am about to write. I know that most of you have such terrible troubles with your LO that this will seem trivial. And it is but I need to say it or it will fester in my mind.
My mother (78, late early stage of AD) went to my brothers for Christmas. I spoke to my brother and he said she was having a good time and did not seem to be having any problems. I know I shouldn't be but I am disapointed. I was hoping she would have a lot of symptoms so they could see what she was like, mostly I think to show them what I have been dealing with so they would be willing to take her more often. I should be happy she had a good time but now I am worried that no one will believe it when I say I need a break.

Find a way to take a break. On your own. Improvise. And don't worry about what other people think. Tell them you need a break. If they don't believe you, then tell others. Until you find someone that believes you. --Jim

Dont you just love it! You put up with all the stuff and they are little angels around the other sibs.

I have the same thing. All sibs are out of reach most of the time. But let one call or come for a visit and they turn into different people.

I found out at Christmas that one brother now has his MIL living with him. Boy was he talking a different story. HEHEHEHE

It made my Christmas!

I think what you need to do is make arrangements for her to stay for at least a week. I dont think they can keep on their company face that long.

Kathy.. I know exactly how you feel ,My sister (only sibling) lives in florida (us in wv)has not spent any holiday with our Mother in 16 years. (she has been a widow for 11 yrs.)she is too busy caring for a 9 yr. old grandson.Mother always has to go her in florida for my hubby and i to have a break.and i know thats not good for our Mother since this horrible disease is progressing everyday..but when she is with my sis, she always tells me everthing is fine, mother is a little confused (understatement)..when i told her christmas day about mother pooping in the furnace vent..(she said well i wonder what made her do that) she is in denial.. i completely understand what you mean.. sorry for venting to you Kathy..

Oh,,I know exactly what you mean,,,,when others are around,,the LO is different,,,makes you feel like the other family or friends think that you are a liar,,,exaggerator,,,and you feel foolish and angry!! Yup,,,I know exactly what you mean. But,last night when my daughter was talking to Mom on the phone,,she had a reminder that Grama isn't quite there anymore,,,Mom insisted that my Dad ( who was my stepdad,,but I loved him like a natural Dad),only had one son,,,daughter knew better. I had to remind mom that one of Pop's son's was killed several years ago when a car hit him on his motorcycle...then Mom says,,,oh yeah,,ok,thats right.

Don't feel bad if your Mom presented well to others,,cause you should just drop mom off over there with one of them on a saturday,,and leave her for a few hours,,,do this consistently,,and they will see exactly how Mom really is. Peace.

Mother was down to brothers for a week or will have been on Sunday when they bring her back. Course I spent the whole time she was away sorting thru her papers trying to find financial records, though I spent most of it just getting rid of begging letters. I still haven't found all the financial records. I figure when she gets back I'll tell her I would like to help her organize her records. I think she will go for that.
But still I really wish they could have seen her at her worst. Of course maybe they were trying to make me think it wasn't too bad so I wouldn't feel guilty making them take her. (why do I think? NOT).
oh well I guess I just have to look at the bright side after all things can only get worse.
Sorry have to laugh or I will cry and I hate it when my nose gets all snottied up.

Kathy there is nothing to forgive. I'm glad you shared this with us, because it lets me know others LO act that way too.
My husband can get my mom to do things I can't. She is usually agreeable, but the last couple weeks she has been more diagreeable. Especially at meal time when it comes to opening her mouth.
I agree you need a break. I think our LO need a break from us too. There is a lady who used to stay with my mom before we moved in, and she comes about once a month so we can go out together, and my mom starts talking a lot ,(hard to understand what she is talking about though)and she perks up. I can tell she really enjoys her visit. Maybe if you tell your brother it is good for her too, he'll take her for awhile.
Don't feel your thoughts are trivial. You never know who else will benefit from them.
And thats what we're here for, to listen, understand, and encourage each other.

Kathy, nothing to forgive for feeling as you do, but you know that old saying, "be careful what you wish for!"

If your mom didn't behave well and there were problems, you brother might not be so quick to take her next time.

My SIL already informed me that my mom can't go there unless my brother is home 24/7.

Wow, Kathy - your letter could have been written by me. I know EXACTLY what you are saying. Amazing. My siblings actually said they other week that they wonder if Mom really does have AD!!!!!!!! Mom is soooooooo far gone, remembers NOTHING, doesn't know what a toothbrush, comb, etc;, is, and on and on and on. Mom smiles and nods sweetly. THEY don't really talk to her, because if they did, they would realize that Mom is rapidly loosing her language skills and CANNOT carry on even the most simple of conversations. Anyway, I'm getting carried away - just wanted to tell you Kathy that I totally and completely understand what you are saying and it isn't petty - we want our siblings to help out and understand what is happening. Mine are just too darn selfish to care, unfortunately.

I recognize this so well.
For a very long time Karol was able to fake it too. She could get along for a time, seeming normal to those around her for a few hours only.

But time has changed that. It has become more and more difficult for her to manage. She tires more easily and repeats so much more. Also can't follow conversations hardly at all. (She's still a gem though)

Give it time and they will learn.
In the meantime, stay the course and as others have said, don't hesitate to ask for help.

You know, even if you were taking care of a parent WITHOUT dementia, you would need a break!

They won't believe because they don't want to do so...

The point is not whether anyone thinks you deserve a break its wether they help you get one. If you didn't need a break you would not ask for one. Its not not up to anyone to judge whether you deserve one.

Sad that they don't understand now. Also sad that they will eventually. Let them think you are wimpy - they'll understand later.

For now, get what you need. No need to justify. You deserve it and you'll need it to do a good job.

Hang in there!

PS - I would be dissapointed too! Its not fun having other people act like you are out of your mind or exagerating...

Hey - since she's doing "so well' and having a good time, maybe the isit could be extended? She'll have to let down her guard eventually?

quote:

Originally posted by ELO:
THEY don't really talk to her, because if they did, they would realize that Mom is rapidly loosing her language skills and CANNOT carry on even the most simple of conversations.

I think this is a really important point you are making that I hadn't thought about before. We also have the same problem with my MIL who behaves so sweetly and reasonably with the other siblings and falls into incoherence, anger and misery with my husband and his father who take care of her daily.

What you are saying about the fact that they aren't really paying attention is something that I hadn't thought of. Of course that's true. If they really tried to have a conversation or find out what the person was thinking and feeling, they would notice what is happening. As long as they're willing to go along on a superficial level of social interaction, they can avoid seeing the reality, for a while.

actually I asked if they could extend it a little longer I have so many papers too get thru and I can't do them when she is here. My brother said no. He wanted to go shopping up here on Sunday so he is bringing her back then. He couldn't go shopping Monday because the store won't be open. Can't interfere with his life you know. Do I sound bitter?

If I hear one more time from casual visitors that my mother seems just fine and are you sure she has AD?? I think I will scream.

kathy h, your Mom has a medical diagnosis, right? So your brother needs to do his share; whether he SEES it or not - and it was already said, what I was gonna say- HE'S JUST NOT PAYING ATTENTION - his saying "oh, she's not so bad" is irrelevant.
If he feels she's not so bad, maybe he needs to be the caregiver, since obviously, Kathy, you're just making a big thing over nothing.
I know how hard it is to change a relationship, to make family actually SEE you sometimes, but sometimes you can make a breakthrough. Maybe you can get your brother to actually SEE you, and realize that whether he feels it's an issue or not, YOU do, and you need help. And truly, time will break down your Mom's act.
God, slogging through the paperwork AND caring for her personally. I'm giving you a hug!

My dear husband is wonderful in most social situations, in fact, I try to have company, feeling it's good for him to see the kds and our friends, and of course, the grandies love him to death. But the other evening, I had our neighbors in for cocktails, for the holidays, and he couldn't follow any of the conversations... He just walked from group to group, saying what are you talking about here, the men are talking about boring stuff. (he was always interested in politics, etc). Anyway, when everyone left, he sat down with me and told me he doesn't know what's the matter with him, he just can't seem to remember anything anymore, and he was really quite upset. Even yesterday, he was stil talking about it. He's been diagnosed with AD, but I have actually had him on Arecept for about 3 years, as soon as I noticed any loss, and it has held off the deteriation very well. Now he's on Exelon, but he is going down hill much quicker than he was. And it must be so scary for him, as it would be for any of us. I do get a lot of support from the 3 kids though, they listen to me, which sometimes is everything. We are staying over at my daughter's now, and last night, he couldn't find the bathroom, or the guest room, and he was really amazed when there were pajamas laid out on the bed for him. Oh well. that's life, he's 83, and I'm 63, so I knew what I'd signed on for. By this time we had put his mom in a nursing home, so the meds do work and hold off the ogre of the disease. I just have to accept the fact that our life has changed now, We have a loving family and loving friends, who all know, and love him anyway. Thanks for tis forum. chris

Gosh. I am so relieved to read these posts. My Mom is able to "fog" others also. Only myself, the aide and my 90 year old step-dad see the "real" Mom on a daily basis.

It never ceases to amaze me that for periods of time, Mom can become coherent, calm, pleasant and appearing as though there is no problem when others, (important others), are present.

However, once the visitors are gone, or the MD appointment over, or the social worker leaves, Mom once again becomes agitated, constantly angry, verbally abusive, etc. I know that sometimes when I am speaking to the MD or the social worker, they sound as though they think that perhaps this is a daughter problem, not a patient problem.

I stay professional and non-reactionary and have my ducks in a row re changes and behaviors when I speak to the health care professionals, and my out of state brother, but unfortunately; Mom trumps all. Only occasionally does she ever let the "cracks" in her mentum show, and when she does, it unfortunately is never in front of those you wish it would be.

I finally let go of this, and let others think what they will. I just keep on keeping on. It's only a matter of time before it all becomes self-evident. But oh boy, I wish it were sooner rather than later. It makes such a difference in how others approach her and how others make their plans.

The question was raised that Mom has a co-committant underlying psychosis in addition to her dementia. This, I found, is not unusual and can manifest itself AFTER the onset of dementia in the elderly. Nasty piece of business as most of Mom's behaviors come with "malice aforethought", and with her is quite personal. This is not a disease or process I would wish on anyone - it drags so many others into it's snare!

I am so thankful for being able to "listen" to all of you - I feel much less isolated.

Mother wasn't in the house more than 5 minutes when she was having problems. She couldn't remember my SIL name and had to ask her what it was. Funny B and SIL didn't seem to react to that. Later after they had gone she forgot SIL name 2 more times. I wonder if they just never listened to her so never saw that she was having problems. Not that it matters I guess. Things will work out however they do.

quote:

Originally posted by kathyh87120:
I hope you will forgive what I am about to write. I know that most of you have such terrible troubles with your LO that this will seem trivial. And it is but I need to say it or it will fester in my mind.
My mother (78, late early stage of AD) went to my brothers for Christmas. I spoke to my brother and he said she was having a good time and did not seem to be having any problems. I know I shouldn't be but I am disapointed. I was hoping she would have a lot of symptoms so they could see what she was like, mostly I think to show them what I have been dealing with so they would be willing to take her more often. I should be happy she had a good time but now I am worried that no one will believe it when I say I need a break.

It is interesting that ex-MIL doesn't display the same "fog" while her kids are around. What happens that she can act "clear" and doesn't show her anger and crying fits? I know she doesn't have control over AD, but it seems as though she does at times. I too worry that no one will believe what I say and that I need help. I know Jim that we have to continue to ask others for help till we find the assistance we need.

Two things I believe are at work here:

#2-Our LO's can rise to the occasion at first. They can be sweet and sociable and clear minded when there are visitors- at first.

#2- De nile ain't jes a river in Egypt! If they don't see all the help she needs, they are able to walk away. Much easier to say "Kathy is overreacting" Than to say "Kathy needs some help, how do we change our lifestyle and help her?"

In my case, I stopped wasting my energy on convincing them she was ill. I decided I just didn't have the strength. Eventually, everyone knew because she could no longer rally.

By then, everyone agreed I was right. By then, I didn't care what they thought, all my focus was on doing what needed to be done.

Hey Kathy,
Don't worry...nothing is trivial in the life of a caregiver.

Just a thought...could you use reverse psychology with your brother. Just say, "Looks like Mom is doing fine at your place. So let's work it out so that she comes regularly to be with you so we both get the opportunity of being with her. It should be no problem since she is now doing so well."

Time will tell the truth even when many do not want to face it.
Peace,
Bill

quote:

Originally posted by Bill:
Hey Kathy,
Don't worry...nothing is trivial in the life of a caregiver.

Just a thought...could you use reverse psychology with your brother. Just say, "Looks like Mom is doing fine at your place. So let's work it out so that she comes regularly to be with you so we both get the opportunity of being with her. It should be no problem since she is now doing so well."

Time will tell the truth even when many do not want to face it.
Peace,
Bill

I would bet that once that is said, his story will be different on how well she does!

quote:

Originally posted by kathyh87120:
actually I asked if they could extend it a little longer I have so many papers too get thru and I can't do them when she is here. My brother said no. He wanted to go shopping up here on Sunday so he is bringing her back then. He couldn't go shopping Monday because the store won't be open. Can't interfere with his life you know. Do I sound bitter?

Kathy,
What would happen if you were "unavailable" when your bro had this scheduled returne? IE: things in YOUR life cropped up? What would your bro do? Push her out on the doorstep and drive away? Sometimes you have to drop the ball in their lap...and then rent a motel down the road for a few days of peace and quiet.

Christine,
What a lovely post. Your husband is a very lucky man. Like you, my lady has been on meds from early on and we have kept "AL" pretty well under control.
But now, more and more, he is getting the upper hand. Nothing we can do except keep fighting and loving.

I truly enjoyed your post.

quote:

Originally posted by Christine R:
My dear husband is wonderful in most social situations, in fact, I try to have company, feeling it's good for him to see the kds and our friends, and of course, the grandies love him to death. But the other evening, I had our neighbors in for cocktails, for the holidays, and he couldn't follow any of the conversations... He just walked from group to group, saying what are you talking about here, the men are talking about boring stuff. (he was always interested in politics, etc). Anyway, when everyone left, he sat down with me and told me he doesn't know what's the matter with him, he just can't seem to remember anything anymore, and he was really quite upset. Even yesterday, he was stil talking about it. He's been diagnosed with AD, but I have actually had him on Arecept for about 3 years, as soon as I noticed any loss, and it has held off the deteriation very well. Now he's on Exelon, but he is going down hill much quicker than he was. And it must be so scary for him, as it would be for any of us. I do get a lot of support from the 3 kids though, they listen to me, which sometimes is everything. We are staying over at my daughter's now, and last night, he couldn't find the bathroom, or the guest room, and he was really amazed when there were pajamas laid out on the bed for him. Oh well. that's life, he's 83, and I'm 63, so I knew what I'd signed on for. By this time we had put his mom in a nursing home, so the meds do work and hold off the ogre of the disease. I just have to accept the fact that our life has changed now, We have a loving family and loving friends, who all know, and love him anyway. Thanks for tis forum. chris