TP. A matriarchy.

[meme]

I agree Meme we do need to talk
but with the freedom of speech comes a responsibility to not intentionally hurt or be spiteful to provoke response.

This forum could descend into a slagging match I'm sure, if all of us posted the responses we felt.
I have felt upset and rattled by some of the things on here,
the written word is both harder to interpret and makes it easier to be cavalier i.e say things that would not actually be said face to face.
That kindness, that responsibility, that basic humanity must be brought into play on a forum such as this.
Just my opinion,
Gwen X

LOL Gringo...I see you're at the bottom of the pile again, good thread
I think I read some other posters saying that the time there was a record number of posters online was because there was a glitch that didn't show/allow members to log off.

I dont see anyone intentionally hurting people or being spitefull...and of course we do not really have total freedom of speech...and I am sure every poster posesses basic humanity/kindness and responsibility..no matter what dire situation or emotion at the time...I just meant you cant please all the people all of the time can you?

 

[garnuft]

I wish I could share your certainty Meme.

I agree we cannot please all the people.

Just some of them who share my life, would do me X

 

[rjm]

Oh no! the equality monster raising its heads on TP

Uneven numbers yes. But a matriarchy? I don't think so.

Posters and responders on the forum are indeed dominantly female, but within society carers are mainly female so their proportion here may well represent equality. I don't think there is a bias of the disease toward either sex, but due to increased longevity of females and increased probability of being affected by dementia with age there are more females with dementia than males.

I have actively been on the forum since last summer and was a sporadic visitor for several months before that. I visited because I appreciated and could relate to many of the posts and was comforted to hear of others in a similar situation. I joined because I hoped that in some small way sharing our experiences may contribute to helping others also find comfort.

Our gender differences seem tiny when compared to the commonality we have. Speaking in the broadest of terms, women and men do communicate differently, do interact differently socially, and do react differently emotionally. But that being said, I have never yet found anything on TP that would make me less inclined to be here based on my gender.

Best wishes, and keep up the good work everyone.

Richard
(the proud owner of an X and a Y chromosome)

 

[garnuft]

I agree Richard.

XX

 

[cragmaid]

Speaking as a female.....there are some who would say that that statement answers the question...I can say simply that help comes from the heart, not the gender. Often it is the case that some women actively seek as much information as possible whereas some men function better on a need to know basis, and only seek more to answer a specific need.
I often have a "lurk" rather than a "sign in", it depends whether I have time to reply to people or not.
My OH, who is a wonderful support, would never dream of joining a forum, he is an incredibly private person.
People have their own reasons why they join, but at the end of the day, if they come to us, we offer our support unstintingly. It may not always be what they want to hear, it may not even help, but the support is, and will always be there for those who need it, be they XX, XY or even unknown!

 

[Taz]

I think that often when many folk find TP it is at a stage when they are trying to come to terms with a diagnosis for themselves or a loved one. I remember registering and then lurking, looking back on old posts and threads and gleaning more information on here in just a few hours than I had in months of bouncing around between the 'professionals'.
Sporadic posting tends to be a fact of life for many of us too.......but I suspect many of us who don't post daily or even weekly do still pop on even if we're not as active as some other TP members .
I have been trying to get my brother to join but he seems to finds things like Forums to be something he is uncomfortable with, likewise with my husband.
I agree that the gender of those who post is not something I had ever really considered, nor had I thought about the gender of Admins !

X

 

[gringo]

It’s strange how so many have commented on the question of gender difference, the real question for me is how are the 770,000 getting along without any support mechanism. I only came on here by accident, and I shudder to think how I would have coped without that accident. TP and it’s members are only the tip of the dementia iceberg. Somebody, on another thread, made a comment like that only a short time ago and it’s stuck with me.
Going back to the gender thing to clear my lines ,as it were, I only really commented on it as interesting, and perhaps even beneficial. I have no problem with a matriarchy! Ok. I chose the wrong title for the thread. I should have called it ‘TP . the tip of the iceberg’.

 

[21citrouilles]

I like the points that you've raised and your thorough presentation of statistics.

I think that men in general are less open to sharing their feelings and appearing vulnerable, as it's hard on the pride, on the appearance of being manly. They don't want to look like they're in distress.

Even I, a woman used to share my feelings, found it hard at first to share my anxious, sometimes tortured feelings, my fears, my sadness. It took me a while to join, and still another while to finally post. Being new to this disease, I found it very painful reading the posts, until I acknowledged the reality of the disease.

Maybe some of the inactive users don't visit anymore after they've lost their loved ones and want to distance themselves. Maybe some are deceased, sick....

I too find this site a treasure of info and help.

 

[zeeeb]

maybe it has something to do with that men like to fix things, and women like to analyse things...

i certainly do a lot of reading, researching, analysing (oh, and venting probably more than anything). i try to prepare myself for what is to come. i try to vent and let off steam so that i have something left in the tank to offer.

maybe it has something to do with age. many people who care, are older, and not so technologically into forums and the like.

 

[Padraig]

Oddball male

Well said Sue J, "There's always a reason for 'strange behavior' " All the incidences of unusual behavior I encountered with my late wife I viewed as little different from so called 'normal people.' One has only to look at people on a night out drinking; some of the strange things they get up to, but can't recall the following morning. Then there's the 'uptight' manager attending the company Christmas party, has a little too much to drink and ends up acting like a delinquent kid.
How few people have any idea how children survive life in an orphanage? They make their own make-believe-world with friends they alone can see and speak to. Each of us see the world and objects about us differently. A case in point: an elderly lady enters a butcher's shop and asks for the sheep's head in the window. "Sorry love, we don't have a sheep's head." "But there's one in the window, there." "Sorry love, that there's a mirror."

I came on this site towards the very end of our journey, not to learn about AD, but in order to share of our experiences and the unorthodox manner in which I view the society I live in and went about caring. I've neither given or taken advice without question and lived life my way. It very much angers and frustrates me the way the very vulnerable dementia suffers are viewed and treated in society. Guess I'll always be an oddball male stray.

 

[PeggySmith]

Hi I know of a few male members on TP who actually have dementia diagnoses , Norms’ , Barry , KenC , and Tony all at one time had a regular input speaking about their dementia and how they cope unfortunately there is so much stigma and people forming opinions that upsets them so they just give up trying to tell their side of how they are actually living with dementia, we know there are hundreds with the dementia illness who couldn’t become a member on TP who unfortunately couldn’t do this but those Guys that can tell you won’t because of past comments from people without the illness

That statement shocked my to my core, I've been thinking about it all day. This may sound incredibly naive to a lot of people, but I've never made a connection in my head between Norms and my MIL. As far as I am concerned they are as different as chalk and cheese - different species, even.

BUT I can now see that when I and other posters acknowledge that dementia is part of someone's end of life journey or get frustrated with our roles as carers, that could be taken incredibly badly by someone who's battling the disease with a full awareness of what's going on.

I'm sorry if I've said anything to cause upset, but all I think of on here is an 85 year old who is at the end of her life and not willing or able to help herself at all. I don't mean you.

 

[Amy]

Hi Gringo,

If I remember correctly, in 2007 there was a glitch on the system which produced the figure of 1200+ people active. It was discussed at the time.

In its early days the forum was moderated by Craig, Bruce and Norman.....along with several women....but there was greater equity....and I think at that time there was less disparity between the genders.

The membership has escalated over the past few years....and the number of posts.....but yes this is only the tip of the iceberg. Maybe with growing use of technology it will continue to grow....with greater awareness of dementia and a higher profile of AS more people may become involved. I think one potential danger though is that the site could become too big and unwieldy.

Just some thoughts.

Amy

 

[Barry]

Sorry to (PeggySmith) but I’d like to correct what you said

And I Quote:
BUT I can now see that when I and other posters acknowledge that dementia is part of someone's end of life journey or get frustrated with our roles as carers,

I, and I’m sure the others that you mentioned in your reply to this thread do not consider that our dementia is part of our “End of life journey” it’s just become a frustratingly daily irritation and interruption of our life’s journey… please remember “We are living with dementia, not dieing from it”

Barry

 

[PeggySmith]

Hi Barry,

Sorry, I don't always express myself very clearly but I was trying to apologise to you and everyone else living with dementia.

My MIL is in her mid 80s and has a lot wrong with her as well as vascular dementia and her life will end soon. She needs a lot of care and help and that's what I post about.

I'm sorry if I've said anything to cause upset, but all I think of on here is an 85 year old who is at the end of her life and not willing or able to help herself at all. I don't mean you

I just never made the connection between my MIL's needs and the feelings of everyone here who is living with dementia and having to deal with it every day by themselves.

 

[Nordholm123]

The matriarchs don't give a toss...

Hi
Sorry to disturb the cosy atmosphere of TP but I don't think men get any consideration at all. The family home, that I loved so much, for me, a man now of 70 whose wife with Alz's went into a home 5 years ago, has disappeared forever. The Carers' Centre was a great help until 6 months ago when they showed me the door saying that I should not need any support any more. They gave no reasons for this. I used to receive support there and a lot of help but now nothing.
THE ALZHEIMERS SPOUSE (MALE) has a terrible time. You are just left to it. I cannot cook, iron, bake and I returned from each visit to my wife, to a black hell hole with the heart torn out of it. Most women are smug about this. Well you should learn to cook! I didn't even want to eat! Apparently, I am expected to sit quietly in the house and potter about like an old woman! I did not know where to start.
Five years later and I am just starting to emerge from the worst of it. I am quite prepared to look after myself - but there is nowhere to turn when problems occur. My wife had the answer for everything. Should I take this newish sweater with hole in it back to Marks and Spencer? Will I be making a fool of myself because I do not have the woman's knowledge of textiles?
I have thought about suicide occasionally but would not actually do it however there have been times when I wished death would come soon - at least I could relax then!
Do not underestimate how bad all this is. IT IS MUCH WORSE FOR MEN THAN FOR WOMEN.
I approached the Carers with a plan to help Men cope better. They offered me a room for a meeting but would not supply me with the names of other men in the same position that I could contact to start our own group. Big help there then!!
I submitted a paper to the Archbishop about the plight of Men in this position. That was twelve months ago. I have had no reply.
I approached an academic in the local university with my paper. He said he would look at it. No reply.
I have no access to the newspapers or the media. This matter needs to be aired. There is no record in government or social services about how many men suffer in this way.
I am looking for help in making progress in setting up a group to address our problems and get information and assistance. I cant see that there is anyone who could assist me in this matter.
I rest my case.

 

[loveahug]

Nordholm, your post made me incredibly sad for you. How depressed, bewildered and abandoned you feel, your trauma of losing your wife to this dreaded dissease screams from your post.

Sadly in these politically correct times I'm afraid the attitude from a lot of people is very much the same 'you'll just have to get on with it'. Some suggestions: contact local radio to be interviwed and create a get together group for local mutual support, join AgeUK, ask the scarers to pass around a little note to the men to contact you, that way they will be conforming to the rules about sharing informatin. Ask away here, everyone is so loving and caring all your dilemmas will be addressed.

Do you want someone to look after you or do you want to learn? Is there a kindly neighbour you can ask to teach you the rudiments of the domestic science world? Please don't despair, try and look past the blackness for all the lights still shining, and a lot of them can be found on this forum. {{{BIG HUGS}}}

 

[Countryboy]

Hi PeggySmith Like my friend Barry I also have dementia and I thought that in your reply you were accepting
the reality that there are a lot of people with dementia living with the illness daily as you said in your previous reply

BUT I can now see that when I and other posters acknowledge that dementia is part of someone's end of life journey or get frustrated with our roles as carers, that could be taken incredibly badly by someone who's battling the disease with a full awareness of what's going on.


I Thank you for thinking of us Peggysmith hopefully other wil stop and think a bit more like you I’m not best with words
Tony x

 

[rajahh]

Your post made me sad too. My husband would have been like you if I died first I am sure.

When I first met him he had been separated from his first wife for 5 years and his home showed that in fact it was not a home at all, but merely a house.

I have always wanted my husband to die first as I did feel he would not cope at all, and it looks as if I may get that wish as along with AD he now has terminal prostate cancer.

I did try to teach him to cook etc but he just was not interested.

I amnot sure how to offer support to you thoug.

MAny wives struggle enormously when their husbands have AD or die as some are not sure of finances, or organising workmen etc, and these can be a nightmare too.

I knew of a woman who when her husband died did not even know which key on the keyring was for the front door!!! She had never opened it as he had always been with her. He took her to work and collected her .

My own sister in law would have absolutely no idea how to pay a bill or find out if the bank balance was corect even though she had been a secretary in her working life.

I would be happy to discuss any problems you have through private messages if it is advice etc you would like about domestic things, as long as you would not want a timetable for housework, as I do so little of that through choice, but I am willing to help in any way you think I could

Jeannette

 

[gringo]

Hello Nordholm,
I hope you feel a little better for getting that off your chest. I am not being patronising, I too am wearing the T-shirt. On occasion I too have been almost overwhelmed by very dark forces. I do not underestimate how bad it can be. I know.
Where we differ is that I have received so much help from coming on to this forum. I am only one year in, as opposed to your five, so I’ve still got some learning to do. Yes , sometimes TP. does appear a bit cozy, but ,in my experience, when the chips are down most of the members offer the kind of support and help that makes the difference. The coziness you speak of may well stem from our realisation that sometimes we feel the need to stand back and laugh at ourselves. Laughter can be very strong medicine.
I notice this is only your second post, may I, with respect, suggest you give us more of a chance to offer you the kind of help you are looking for?

 

[Big Effort]

Hi Nordholm 123,

The matriarchs don't give a toss...

Hi
Sorry to disturb the cosy atmosphere of TP but I don't think men get any consideration at all. The family home, that I loved so much, for me, a man now of 70 whose wife with Alz's went into a home 5 years ago, has disappeared forever. The Carers' Centre was a great help until 6 months ago when they showed me the door saying that I should not need any support any more. They gave no reasons for this. I used to receive support there and a lot of help but now nothing.
THE ALZHEIMERS SPOUSE (MALE) has a terrible time. You are just left to it. I cannot cook, iron, bake and I returned from each visit to my wife, to a black hell hole with the heart torn out of it. Most women are smug about this. Well you should learn to cook! I didn't even want to eat! Apparently, I am expected to sit quietly in the house and potter about like an old woman! I did not know where to start.
Five years later and I am just starting to emerge from the worst of it. I am quite prepared to look after myself - but there is nowhere to turn when problems occur. My wife had the answer for everything. Should I take this newish sweater with hole in it back to Marks and Spencer? Will I be making a fool of myself because I do not have the woman's knowledge of textiles?
I have thought about suicide occasionally but would not actually do it however there have been times when I wished death would come soon - at least I could relax then!
Do not underestimate how bad all this is. IT IS MUCH WORSE FOR MEN THAN FOR WOMEN.
I approached the Carers with a plan to help Men cope better. They offered me a room for a meeting but would not supply me with the names of other men in the same position that I could contact to start our own group. Big help there then!!
I submitted a paper to the Archbishop about the plight of Men in this position. That was twelve months ago. I have had no reply.
I approached an academic in the local university with my paper. He said he would look at it. No reply.
I have no access to the newspapers or the media. This matter needs to be aired. There is no record in government or social services about how many men suffer in this way.
I am looking for help in making progress in setting up a group to address our problems and get information and assistance. I cant see that there is anyone who could assist me in this matter.
I rest my case.

I too was very intrigued by your post, Nordholm. I am a matriarch, in the sense that I was born female. However, if we are all very honest, this isn't actually a gender issue per se, as pretty well everyone on this forum has faced darker hours (and sometimes this extends to years), that we were raised to cope with.

I don't mean to sound trite. As a matriarch (in previous pre-carer existence) I have moved hell and earth for those (mostly women) who the world has forgotten. Issues such as ill health, poverty, lack of opportunity, no access to services, lack of transport, lack of access to computers and internet. 17 years of voluntary service highlighting the plight of those who cannot. There is so much unmitigated suffering out there, it is quite staggering.

Back to carers, and those who need care. The weirdest thing is every time I visit the forum, even in my times of great distress (e.g. I am not coping well at all and totally overwhelmed), I find others who have it far worse. The result is I start realising that I can cope, it may be hard, it may be beyond me at that moment, but others have been there and are willing to share how they coped with their darkest challenges.

Again, not to be trite...... when you have issues that we matriarchs have that added edge of experience and knowhow..... well, just ask. Being a carer is also about how to return a pullover that has developed a hole too fast, or how to use the cooker, shop. Rest assured, if you ask here on TP, you will receive so many qualified and caring answers that you will be humbled.

To answer why you didn't get a decent response to your paper, as a seasoned campaigner, the answer is probably this. Lack of solutions. You have clearly posed the problem clearly and articulately. But to address these ongoing problems is bottom of most government's or health care's agenda. While the big wigs nod and shake their heads, very very little ever changes. The poor continue to be poor, violence is perpetrated on those who cannot protect themselves, education is a luxury, housing ditto, work ditto, and in sociology we called this the "comfortable democracy". And the concept of comfort is only maintained as long as we can avoid those tricky problems.

As Gringo suggests, give TP a whirl. There are totally amazing people here. My life is the better for it. Hope you find your way around the house shortly, and I would always be delighted to help out if I know the answer to any questions you or others may pose.

Good to have you here. I, for one, would love a few more patriarchs. I find their posts refreshing, stimulating, and they offer a new perspective.
Take care and talk soon, BE