next week 4 out of 5 siblings are meeting with a councellor from Alzheimers Association. I have asked that we get together so that we can do our best for our parents safety, security and happiness, and also if we could actively prepare by thinking about what we want,what we have to offer and what we are prepared to do ( including bro unable to come). I really want this meeting to be as effective as possible. We need to be able to communicate openly for our parents to get the best from us at this time of their lives. I'd appreciate any pearls of wisdom on this one. thank you cheers

When it comes to Alzheimers patients, the children general know what their parents wishes were. BUT remember Alzheimers patients can still think and you should inlude them in any decision making too.

I wish I could make it better and say it will get better but it won't. Make sure your parents sign a Health Directive. If they are not capable of doing this then you may have to get a patient's advocate to insure their rights are being met.

I would seek an Elder Care attorney to take care of the legal issues like home ownership, finances and other legal issues.

As for the siblings, make sure each and every one of you gets a say in the situation. My family became fractured over elder care and now I am not speaking with half of my family members because of the hell they put me (the caregiver) through.

Glad you were able to talk to your family. I think the diary is an excellent idea.

quote:

Originally posted by paradoxa:
i have been teary and flat since, i'm not sure of the reality but i feel discounted and my time effort and experience somehow underacknowledged or undermined. i think it's just the way we communicate,

These feelings are quite common when caring for someone w/AD. I know I've had then. It's the strain and stress, living in an uncharted and unknown situation, the yo-yo life. Please take care of yourself--I know that's easier said than done, but you have to stay healthy.

Had meeting with councellor and issues to do with meals,entertainment,our visits, future care and debate wether Dad needs to sign an antcipatory directive. Also to set up notebook diary at Mum & Dads home, (I have the diary and asked that someone else introduce it also for someone else to follow up legal). I think the meeting went quite well,however i have been teary and flat since, i'm not sure of the reality but i feel discounted and my time effort and experience somehow underacknowledged or undermined. i think it's just the way we communicate, it's not a new feeling, however i will be having a follow up meeting with the councellor as soon as i can. To email each other would be far to unneccessary and difficult. . . thanks

Bobcat, your response was so well put.

Paradoxa, I think e-mail is very appropriate. There was a time when I thought it otherwise, but a friend going through adoption process, and who was about 15 years ahead of me to get a computer, explained to me that it was a way to communicate with planning and forethought, (and editing) that can never occur in person or on the phone. Plus where the phone can be very inconvenient when it rings, people sit and read their e-mail at their convenience and think about their reply, both aiding a cooler headed comminication process. Especially valuable when time lines are crossed. A person pays attention at when they are at their best rather than caught in the shower, or in the bubbles.
Enjoy your 2 days, you have earned them. Good work honey.

Thankyou all for your interest and support.
I have no doubt that my 4 siblings care about our parents and will continue to be involed for their lives, we are all involved and all visit them regularly and do what we can. We just have great difficulty exchanging information together, especially emotionally charged, inter-personal relaionships to do with family. We are all articulate, intelligent, generous decent people who like to put our fingers in our ears and sing la la la la when the big issues pop up. Heaven forbid i feel like 85 and 87 years old could be time to start being able to discuss elder issues. That Mum has Alzheimers and Dad her carer with minimal home care support, a G.P whose primary interest is sports medicine and us. Yes, forgive me for being pushy but i really think the time has come. From being able to explore my ideas on this forum I have decided on some minimal requirements to prevent difficulties in the future. I have so far: communication, cash, caring and transparency. So I group emailed an email I'd sent to Dementia Services Community Nurse outlining an idea that we each group email each other something about Mum & Dad every week. Bit impersonal, I apologised, however i think it covered my "issues" with communication. What do you think? I'm off to soak in a long hot bubble bath no family responsibilities for 2 days YIPPEE

paradoxa,
good luck with your situation. It seems like its a bit like mine in that your siblings really don't want to be bothered with your parents. I have a sister and 2 brothers and if possible, none of them would ever see our mother again or have any contact with her whatsoever. Thats just the way it is and how they feel. They don't want to be bothered. Two of them probably won't have anything to do with her; my sister hasn't been heard from in over 15 years and my older brother hasn't seen our mother in 5 years. But my younger brother and I have always been friends and he and his wife at least took her for 10 days last year so my family could go on vacation and he did meet for a reunion (we live about 6 hours apart) the year before so he saw her condition. He hadn't seen her for over 5 years before that.

Thats just how it is. Like me, you are in the position of experiencing the reality of older people who cannot take care of themselves but they can't just wrinkle their noses and disappear. They have to live and they have to be cared for and it is an enormous big deal of a responsibility. Don't underestimate the responsibility. If you are the one involved, you'll likely be the only one involved and no one will even come and take your parents for a holiday or a weekend or come sit with them on the weekends so you can be free like any paid health aide would have days off.

If they have savings and income, either you feel comfortable taking an amount equal to at least a third what professional care would cost or you probably shouldn't do it. In my opinion. The first director at the day center I used to take my mother to told me that she'd been a visiting nurse for many years and had seen many situations where it was the caregiver who got sick. You can't feel angry and exploited every day of your life and not affect your own health. In the next couple decades, this is going to be a big public policy topic, incentivizing family to care for elderly, because women are much less willing to be the family "angel."

Thank you Bobcat, I've decided to relax and just get my own head together. Had a good talk with my interstate brother who appreciates my care of M&D and efforts to keep him up to date, has replied to my email as requested with ideas to contribute to the meeting, we have some kind of contact at least once a fortnight. My other brother replied by email with a poem about the drought. then he dropped in and gave me a generous gift and if I let myself give a damn about what he thinks of me I would have thought he was critising my effort, he said he is not a team player (yeah well whatever) I said I didn't care what he was as long as he's not obstructive. I've not heard from my 2 sisters. So I figure we are all able adults and the councellor will be the facillitator. I dont have the time, energy or interest in caring for them at the moment. So I'll spend a few days on caring for me me me yay.

Here is a good meeting plan and tips from the ECO channel
http://www.ec-online.net/Knowledge/Articles/familymeetings.html

Darlin' start with the basics. Your own Qs. What is this Problem? What can be done? What can I do? Let the counciler answer the Qs. Just nudge 'em ,if you can, to ask the Qs on their own. This may help you take yourself off the total hook. I know you will be there for your parents, but they have other children who can and should be involved. As you mentioned, Stuff has happened in your life that has made your judgement fall under scrutiny. So you are passing the buck and stepping up to the plate all at the same time..
Honey , I got your back. My judgement was always under question, but it is still my job. LOL

Thanks Bobcat, I've done heaps of reading all over the place, my brain is popping, coz I dont get to discuss it so find it hard to sumarise and make relivant the info i need. can anyone think of a question to ask that they found useful to get my brain kick started. Sometimes I feel like I'm going the wrong way on an esculater!!!

Good work , Paradoxa. The very fact that they will join together for this meeting is a healthy start. Something that may help this go more smoothly, if it hasn't already occurred to you, is to e-mail them a few of the questions you hope will be covered at this meeting and ask them to send you specific Qs of their own. If you can compile a list in advance that each of them already has, it may reduce the redundancy of qs during the meeting. Also if you can send them a few links so that they can have a little better foundation in advance. Course you can't make them read the articles, but surely 1 or 2 will read some of them.
Many links can be found right in this forum.
Bettyhere's web site for one.
http://www.geocities.com/caregiving4alz/
ECO's stages article
http://www.ec-online.net/Knowledge/articles/alzstages.html
review those and see if you think they would help prepare your sibling for this meeting.
Good luck, it would be to much to expect everyone to magically be on the same page with the same state of mind. Try not to be frustrated if some denial or strong differing opinions occur. You are doing this the right way.
In fact, if you haven't done so yet, Cruise through this ECO channel and just pick a few articles that you feel address your most immediate concerns for this meeting. You will find plenty to meet the current needs, without over complicating the issues or looking too far down the road.
http://www.ec-online.net/alzchannel.htm

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