分类档案:痴呆

昨晚我哭泣,Laurie Scherrer

来源:lugenfamilyoffice.com通过Google图片
来源:lugenfamilyoffice.com通过Google图片

本周,我们有一个由我们的成员之一撰写的博客,他们非常慷慨地同意与您分享。劳里(Laurie)写下了许多关于损失,眼泪和悲伤的优美文章,但也承认她具有欢喜和高兴的能力。

昨晚我哭了。

我哭着无法控制的哭泣,消耗了我的嗓子,我的心脏和肠子。我内心深处感到内,失落和恐惧的感觉,使我失去了每分喜悦和希望。我为失去自己的计划和梦想而哭泣。我之所以哭泣,是因为我知道我不再是我的身份或身份,并且害怕无法控制不断发展的我。我为失去自由上车和走动的自由而哭泣&做任何事情/任何时候。我为失去的回忆而哭泣,这些回忆现在只是给我的照片。我为由此带来的财务负担而哭泣。我为家人,他们将要做出的改变以及他们将要承受的挑战而哭泣。

没有什么让我感到安慰的,因为对即将发生的一切和即将发生的一切的悲痛没有安慰。我哭泣,直到我的颤抖的身体让自己精疲力尽,然后我才入睡。

痴呆症(阿尔茨海默氏症,FTD,LBD等)并非一夜之间发生。它慢慢剥夺了我们的过去,现在和未来。一点一点地带走了我们这个人,因为它慢慢吞噬了我们的大脑。我可以再当我的劳里。它使我失去了事业成功,招待大型团体,参加聚会,开车去见亲朋好友,甚至跟不上家务的能力。

如果我不了解自己的状况,那会更容易。很难看出自己变得越来越不负责任,越来越依赖。当混乱取代我的推理,思考,交流和理解能力时,这令人沮丧。我仍然是劳瑞(Laurie),但是我知道人们对待我的方式以及我的反应方式,我与众不同–我正在改变。有时我很害怕。有时,我会哭。

但是劳里仍然可以欢喜…

今天,我很高兴。

哭泣结束了,新的一天开始了,我为我仍然可以分享和完成的一切感到非常感谢。

我很庆幸我可以在修指甲的过程中与乔伊斯姨妈一起笑,可以和罗伊一起为我屁股上巨大的瘀伤的美丽色彩而笑(跌倒在冰上),也可以与贝基一起为我给她的荒诞难题而笑。我很感谢小事情的快乐。

我敢肯定,我的情绪会再次入侵我的快乐空间并需要一些悲伤的时光,但今天不是。今天,我将笑着享受生活中的所有美丽。知道什么好笑话吗?

感谢Laurie允许我们分享您的智慧和见解。

作者:Laurie Scherrer版权所有2015
编辑:凯特·斯瓦弗

寻求志愿者

志愿者
We are seeking the support of more 志愿者s, with and without a diagnosis of dementia.
痴呆症国际联盟, an advocacy and support organisation, of by and for people with dementia. We are also a registered not for profit organisation thanks to the very generous donation by Dr Richard Taylor PhD. 
A few of our Board members, and some members of our Circle of Friends already 志愿者 significant amounts of time and expertise to run DAI, and some are working for huge amounts of time to run this group. 
We also currently have some very generous support from one person without dementia, who has informed us she will only be available to continue with assistance until July this year.
We have no regular funding, although last year a few members personally raised enough funds to support six members to attend ADI Puerto Rico, and this year, we have had limited funding from ADI since our collaboration with them, also only for use to support members to ADI Perth and certainly not enough for more than a very few to be able to attend, plus attendance at the two WHO meetings.
It can be frustrating trying to be an active member of any group, but specifically in this one due to our own symptoms of dementia it can be more difficult. 
Everything takes much longer. Sometimes we forget to do things we promised we'd do. Sometimes we even forget we said we'd do them. Members might find it frustrating, and due to their own symptoms of dementia, may not be able to be more supportive in the running of the group, but as members, they still expect a lot. Sometimes there are misunderstandings, personalities get in the way, and the D-factor is hard for us ALL to live with, even those members working hard to live better with dementia than others think possible.
We ALL have dark days, when it seems it would be easier to give up and cry.
The more we give to each other, to this organisation, and indeed to our own communities, the more we get back, and we need more people to give of their time and expertise to support the work of a very few members. Please consider actively 志愿者ing rather than waiting for someone to contact you.
Specifically, we need people who would be able and willing to undertake some administrative support including the following;
  1. Support as required for taking and typing up minutes of meetings (in Australia, this is often at 6am - athough we record the meetings, so they can be done after!), assisting with editing and other administrative assistance as required.
  2. Support with social media and our website
  3. Mentoring new members
  4. Managing our online programs, including setting up the Event brite invitations, managing the time zones, etc. To give you an idea of what this entails;
    • We have a monthly Webinar called A Meeting of the Minds, usually with guest speakers
    • We run weekly support groups in two time zones
    • We run monthly cafes called Cafe Le Brain
    • During 痴呆 Awareness Month in 2014, we ran weekly Master classes and would need assistance with this if we repeat them later this year
    • We have a YouTube channel which occasionally requires support, e.g. uploading of new videos
  5. Some support with newsletters, marketing, and any other thing that might be requested of us, including presentations and other material to support attending or presenting at conferences.
Also, an update on the Wish Project we were working on, including the possibility of producing a book of wishes and images, is not for any organisation to use to sell, if it gets completed, it will be for promoting our members wishes. However, if there was a suitable way DAI could turn that into revenue raising, obviously with appropriate consents, it may be worth considering.  All funds would go to members and services; it costs money on a monthly basis to run DAI, which we don't have other than from some generous but only occasional donors.
If you don't have time to 志愿者, but can afford to make a donation, then please do so. If you are attending any of our Webinars, and can afford to donate at the time you register, then also please consider doing so as it costs us money to run these events, for which we currently have no regular funding. 
我们不能独自做什么, 我们可以一起做.