Follow
Share

Got a call from moms cousin. Uncle Ron. 7 years ago they where a pair of pure terrors. I've heard all the stories, several times.

When you ask me how she is, I will tell you the honest truth, least from my eyes.... their own mother died from AD. If you cannot handle it the truth, from my life, don't call.

Do they want me to say mom is doing awesome!!? I can't.... i simply cannot.

This discussion has been closed for comment. Start a New Discussion.
Exactly, Jeanne. I think you've really got it covered; and a blog is a great idea, thank you.
(1)
Report

I told the truth on my CaringBridge blog. Those who were interested and could take the truth got it there, and everyone got the same message. It is interesting that more friends participated than family. Hmmmm ....

When asked, "How is Coy doing," my usual answer was "about the same," or "he's been a little under the weather this week," or "he had a good day yesterday." I never lied but I tried not to give more information than they really wanted.

It was sort of like the question, "How are you?" Sometimes it is not a question at all but a simple social convention. You say, "Fine, and you?" and then move on to real topics. But sometimes it is a real question, and then you have to differentiate between the people who need a casual answer, "Caregiving is really harder than I expected, but I'm holding up OK." and those very few who you can start to cry with!

We think and assume family should be in the select group who gets the in-depth answers. It ain't necessarily so.
(3)
Report

just replied to a text;

"hi, how is mom doing"?

"Fine, doing the best she can".

crickets for an hour now....
(2)
Report

I have found the ONLY people who are truly interested in my mother and what I go through are people who are either current caregivers, been a caregiver or is somehow in the business of caring.
Example; My longtime (37 years) BFF volunteers for hospice with her sweet little pup. She goes to homes and gives a few hours of respite to caregivers 3 times a week. She called my parent's mom and dad just like I did. Now, my SIL is also good friends with her as well...have known ALL of us for just as long. The difference? My BFF works with hospice patients, many of them AD/Dementia. She knows exactly what I am going through and has volunteered to come here (on her own) to let me go away for awhile... My SIL sends me nasty emails saying "Shame on you".
I met a nice woman my age here when I first arrived 19 months ago. She cared for her father (he passed) and now cares for her mother with COPD. Her mother used to care for hospice patients. We were visiting them last night when mom had a full out tantrum demanding she be taken home that instant, I wasn't allowed to enjoy my evening and I was to do HER bidding. I mean once again she talked of me killing her because I was making her stay and that my only intention was to make her miserable. I was mortified at her behavior. They however, didn't flinch, just gently tried to calm her and they STILL volunteer to spend a few hours in the evenings with her so I can at least take my dogs for a walk. Heck, they even said to bring one of my dogs along so mom wouldn't stress about her dogs being left alone. (they are all my dogs)...3rd example.; Met 2 wonderful older gentleman (brothers) they cared for their mom for 5 years/dementia. My friends mother used to give respite/hospice to their mom and they ALL pay it forward. When I take mom out for her birthday or just a fun night, THEY ALL attend... mom loves them (most of the time) and they GET IT.

Sorry.... if I was a nicer person, which I am working on becoming. My words would be a bit more nice. This can go back to those 3 C's that was so eloquently posted. Actually it should be 4 C's. Cause, Change, Cure or Control. No we did none of that, neither did our families. My b*tch goes towards their denial and lack of ....lack of.......heck, everything. Strangers give more than actual blood family.
(0)
Report

then you have my oldest sis -- she helped only when you laid down a trail of 20 dollar bills . still wasnt responsible enough to show up before 10 ; 30 to 11 am on my work days . that isnt helping , its exploiting the situation .
screw people , i aint makin excuses for them ..
(0)
Report

I wouldn't mind the not calling - to be really honest, it would make my life easier - if my mother didn't mind. But then again my problem isn't with her contemporaries, who are mostly pretty tough old biddies who take difficult news well (and have probably dealt with much worse things in their time); it's my siblings' attitude that gets up my nose - all that veering from straight denial, to opining that she'll be glad when she goes, to lofty pronouncements about how she can live her life better. When they bother to enquire at all, that is.

Looloo, you're right, it is very difficult suddenly to find yourself trying to be on candid, confiding terms with a person you've only ever seen to be civil to at weddings and funerals. But sometimes they can pleasantly surprise you! My family is distant emotionally and far-flung geographically, too, and most of my cousins range from stiff upper lip to nut-job repressed; but there are two who are lovely women I very much regret not having known better when I was younger. All part of the wonderful dysfunctional family dynamic, isn't it - you can't get away from the cr*p, and you don't spot the diamonds until it's almost too late.
(0)
Report

It is sad to witness people moving on while you're stuck. But it happens; that is life, that's how it goes.
Yes, many times, people just don't know what to do or what to say, and often that can be forgiven--and should be. And sometimes, it's when things like that happen that you see the truth of the relationship.
My mother's sister is 91 and still going. She is further along in her dementia than my mother is, and is in a board and care facility, living across the country. After receiving a very rare email from my cousin's wife (our family is simply not close, we're not really in touch, that's just how it has always been) notifying me that my aunt had taken a turn for the worse, I gave her my number and told her to call if she wanted to talk. She waited several days, then called, but it felt forced, stiff, and uncomfortable. She and her husband have never been good at 'bad news', have a very hard time 'parenting a parent', and they were the ill equipped to deal with me, and my need to not mince words, and face facts. They're good, caring people, but they can only do so much. And they can't provide what I tried to get from them. And I can't over-extend myself to someone who can't reciprocate. That is reserved for my mother right now, and no one else.
(2)
Report

Looloo- there is truth to what you say.
..
(0)
Report

Countrymouse, it's pretty much a no-win situation. Those of us who have the responsibility really don't have time or energy to indulge the ones who aren't putting forth effort, but who are popping in (via phone, email, in person, etc.) just to make an appearance. For me, it's felt like a bit of a tease -- where I'm under the mistaken impression that I can tell them the truth, possibly enlist some tangible support--even a moment of emotional support would be so nice. And then, I discover that it was mostly about THEM. THEY wanted ME to notice their effort.
(3)
Report

Honestly, I'm not sure what I want them to say. When I say them I mean specifically her family from long ago. They grew up together and prior to mom's AD Diagnosis and dad passing.... they spent many a summer together. I GET IT. Just don't call.... and all the sudden I hear nervous laughter and BYE. I feel bad as well. Nobody in their right mind would like this disease.... especially us caring for them. Maybe, just maybe.... I'd like to hear " Is there something I can do to help you our for just a bit"? They were in Oregon for a month... sent a card, not called. Maybe, just maybe.... well, never mind the maybe's. It is so apparent that for many of us we get left behind and forgot about... so they get a tad of guilt for me being honest.

Ditto looloo... I distance myself also but I am starting to feel a tad angry and that is not how I want to feel.

This is just my point sharynmarie... they are wired for positive lies. I'm not. Least not anymore. 95 % of the time mom does not want to speak to anyone on the phone. It is too confusing for her... she "showtimes" so hard that she's a mess afterwards, it's like her brain is so tired of "trying". Which then makes my day more difficult... no win situation and again that vicious cycle.

More often than not, I feel so bad for her that I do so far out of my way to make her happy, which she never acknowledges probably because she no longer realizes it but..... I too, at times.... feel bad, lonely forgotten and ...used a bit? I dunno.... just rotten no matter how it goes.
(3)
Report

Yeah, but Kazzaa you've told her that, haven't you, and she's always made excuses - that is selfish, and I see it as a different thing. I'm thinking about the old friends, old relatives - probably with troubles of their own - who call because they care about their friends and then can't think of anything to say. I had - well, have, we're still friends - a good friend whose husband had Parkinson's and AD/LBD, and it took him many years to die. When you call, you WANT to say something positive; what's the point of calling if you're just going to confirm that their beautiful life is turning to sh*t before their eyes? She was amazingly positive, which made it easier for visitors, but I don't think there were many of us who could go and sit with her in his room and not just burst into tears. And then there was my BIL's nephew (one of those jumbled families where the nephew is a year or two older than the uncle) who got Motor Neurone Disease, and told us his diagnosis at a family picnic three years ago. Ok, nobody burst into tears or had hysterics or left in a hurry, but handling the truth well? How?

So I suppose where I'm coming from is that I think it's unfair to expect people to know the right thing to say. Not many do. And as we all agree - don't we? - if they DON'T call at all then we really do think they're complete pond life.
(1)
Report

CM am shocked i dont want them to say anything i want them to DO something like help out support financially OR emotionally so im sorry that you dont understand this and think its sad but to left alone to look after mother with no help whatsoever is unforgiveable! I am only civil to my siblings while mums still alive they will never hear from me again when this is over.

I want my sister to come and stay with mum for a wk so i may have a break she has made all sorts of plans with her friends even nights away I NEED HER here to look after my mum and the cat i think its pretty bloody sad that i cant even have a break because shes so selfish. So dont know where youre coming from?
(0)
Report

This may or may not help..I think 50% of the human population is brained wired for only positive feedback. These are the people who do not hear any negative info and they ignore what they their mind cannot process.
(2)
Report

Reading all of these posts makes me so sad. What DO we want people to say? And I don't mean the "what can they do to support us" - that's a separate thing. I mean, what should they say when they are trying to keep up an interest in a person they care about (even if it's only because they USED to care about them, once) who is, in fact, doing very badly?

What is the 'correct' reaction to such a sad thing?
(1)
Report

Good for you looloo but i cant be that nice when my sister phones and asks how mum is? i tell her i dont have time for chitchat i have a huge mess in the bathroom to clean up and boy do i go into detail! Sorry but i aint sailing this ship alone if they dont want to know i make sure in some way that they do know every god d*mn detail.
And yes i hear ya the MOST irritating thing "mum sounds in good form" mums quite perky???? come and do my job for a month when the acting gets too much for even her! Mum has her 1st apt with a shrink next wk and none of them know why should i tell them if they cared theyd know!
(2)
Report

I wish I had some advice but no family calls to ask about Mom.
(1)
Report

Yeah, that always drives me crazy. It's caused me to distance myself from these people -- not that I was ever particularly close or involved with them anyway. But I've mentally moved on from them. I don't keep them informed. If they ask, I know now that it's just them being superficially polite, and I say "she's fine" or whatever is relatively accurate. It also used to drive me crazy when my mother would get a visitor or a phone call from someone she hadn't seen or spoken to in a long time, and that person would facebook me and say "Your mom sounds great!" Or, "I had a lovely time with your mother!" I would be hoping that they'd give me the cold, hard truth about how she's obviously declining, but I think they'd rather not deal with the unpleasantness, and instead want me to know that they at least reached out to her. I'd get so angry. But I just blow these people off now. I click 'like' so they know I'm not actively ignoring them. But I never comment back. What's the point?
(0)
Report

I don't want to look it up. I've looked so much sh*t to explain to me WHY...ahhh
(1)
Report

paranoid delusions jeanette . to be expected .. look up capgras effect ..
(0)
Report

maybe.... maybe all of this is on spot. She still hates me, Come into earshot of her and she will whisper to you that I am secretly plotting to kill her.

At times I think I should put her in that home she is so afraid of....

She is just so mean... so negative.... she's glaring at me this moment.

Yikes
(0)
Report

denial .. ive been seeing it everywhere since im wired on ribavirin. nobody knows s**t . freakin losers . when i screw up i own it . maybe caregiving has caused us to stare facts straight in the face and discard BS en masse ..
he he . pizzed a drug screen at the va two weeks ago that had smoke coming off it . they didnt have to bust me . i told em . i might wash down a zan with a beer but im not a liar ..
(0)
Report

I hear you! My sister dosnt want to hear anything bad i feel like "screaming wake up and smell the coffee".

They "ask" but they dont want to know the ins and outs but they will d*mn well hear it its not ok for just us to go through this alone family should be made to listen to the reality and stuff this "denial crap". I want my sister to wake up as i think shes in lala land and she will fall to pieces when the time comes because she wont wake up and listen to the truth.
I know how frustrating this is and yes ive said to my sister when she tries to get rid of me off the phone if you wont listen why ask how she is?

Yeh just another little annoying thing to stress us out! Next time ask him why hes calling?
(0)
Report

This discussion has been closed for comment. Start a New Discussion.