View unanswered posts | View active topics It is currently Thu Jul 24, 2014 8:18 pm



Reply to topic  [ 16 posts ]  Go to page 1, 2  Next
 Family meeting, with upbeat outcome 
Author Message

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Family meeting, with upbeat outcome
Last Sunday we had our second family meeting, 8 years almost to the day from the first one. I was a little nervous, and I spent a full day selecting and printing handouts for it. The format was pretty much me giving out information, without much discussion. Here was the agenda:

Lewy Body Dementia information
Coy’s condition
• Improvements
• Declines
Caregiving information
• Burden and Burnout
• Contingency plans
Jeanne’s health
Retirement (from the kitchen)
Care away from home
• Emergency Rooms
• Hospital Stays
• Transitional Care Units
• Long Term Care placement
Legal Documents
• HIPPA
• Health Care Directive
• Medical Proxy
• Durable Power of Attorney
Finances

Ours is a blended family -- Coy has 3 daughters and I have 2 sons. Four were present at the meeting, the 5th was on speaker phone, and one in-law was there. Good turnout. :P

Since the meeting the kids have discussed via email who would be best suited for POA and Medical Proxy roles (after me). They've already gotten back to me with their decisions. I will be changing those documents soon.

One daughter called to ask me to think about setting up a few hours a week to go out and do something not related to housekeeping or caregiving. She or her sister will come and visit with their dad during that time. The daughter who lives out of state is arranging to come for a week later this fall.

All the kids are now aware of the preferred hospital if Coy should need it, and also that family member presence is required and I can't do the 24/7 shifts at this point in my life and with my present health. It won't come as a surprise if I call upon them.

I am so grateful that we are not dealing with the sibling warfare I read so much about.

I also think of those of you who are caregiving your parents. Our kids are lucky (I think) to have me in the main caregiving role. If I were closer to Coy's age I think it would be a very different picture. Also in blended families, kids have distinct possibilities of needing to care for more than one parent, in different locations. And then there are in-laws. The pressures on the sandwich generation are complex. My heart goes out to all of you.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jul 23, 2011 2:05 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Family meeting, with upbeat outcome
Sounds good, Jeanne!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 23, 2011 2:16 pm
Profile

Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Family meeting, with upbeat outcome
Thank you Jeanne so much for sharing that - So glad it went so well and that people are offering to help out from their own hearts!

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Last edited by Tonya on Sat Jul 23, 2011 6:39 pm, edited 1 time in total.



Sat Jul 23, 2011 3:22 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Family meeting, with upbeat outcome
Sounds like a good meeting. Do you have an idea of when you will hold the next one?


Sat Jul 23, 2011 4:07 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Family meeting, with upbeat outcome
Well, I told them we probably ought to do this every 5 to 10 years whether we need to or not. :P

In the first meeting we discussed things like brain donation (that was before the Lewy diagnosis, and it was for sleep disorder research), cremation, some end-of-life issues -- and this time I just confirmed that none of that had changed.

What I've been thinking about today is setting up an account on Caring Bridge, and keeping in touch about Dad in that way. I probably would invite other family -- my sisters, the grandchildren, etc. -- to participate if they wanted to. Haven't made a decision yet, but I'm considering it.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jul 23, 2011 4:48 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Family meeting, with upbeat outcome
There is a new web service that will launch in about a month. It is a way for CGs, family members, and health care folks to document what is going on with the LO, enhance communications, and find resources for various things you may need for your LO and yourself.
As soon as it is available, I will let you all know about it. I wish I'd had it when my dad was alive - it would have saved a lot of time and frustration, and everyone would have the same info. so no miscommunication..... It would also have saved me several 1,000 mi. roundtrips to take care of things that could have been done electronically.
CaringBridge is a good way to let people know what's going on. I used it a lot when one of my childhood friends was dying from cancer.
Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Last edited by LTCVT on Sun Jul 24, 2011 7:24 pm, edited 1 time in total.



Sat Jul 23, 2011 5:14 pm
Profile

Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: Family meeting, with upbeat outcome
Wow, Jeanne, that sounds so productive and wonderful. I'm glad your family is able to be open about the situation and realize that you're all on the same team.

I hope, at some point, we can get my older brother to talk about things with us too. It's pretty much my dad, younger brother, and me. My older brother just avoids it. I think my dad had a long talk with him a couple of weeks ago - we'll see if that helps change anything...

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Sat Jul 23, 2011 5:16 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Family meeting, with upbeat outcome
Many in our local support group using Caring Bridge. I think it can be useful for the secondary level of caregivers, friends, helpers. But it does take time to keep updated.


Sun Jul 24, 2011 12:17 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Family meeting, with upbeat outcome
I've signed up on Caring Bridge. Anyone who is interested can go to http://www.caringbridge.org./visit/JeanneGibbs I will get an email asking to authorize you as a visitor and I will do so.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Last edited by JeanneG on Fri Oct 07, 2011 2:59 am, edited 1 time in total.



Sun Aug 07, 2011 9:30 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Family meeting, with upbeat outcome
Gee, Jeanne, can you run a family meeting for me? :roll:

Seriously, I did share Mom's end of life documentation with my sisters, even her will, because I didn't want any false expectations. Another thing I made sure they were aware of was Mom's financial position. As it was just a question of when, not if, she would go on Medicaid, telling them what was going on also prevented false expectations.

Mom's placing POA in my hands was logical, though my older sister was a little put out that it didn't default to her. But she's bipolar and dealing with PTSD and severe depression, so even she had to admit that she wasn't the best candidate. I think she still wants medical decisions made by committee. But having her see that Mom made all of these decisions helped.

For the diagnosis, my sisters were teleconferenced into the conversation. We also try to set up each care conference in a way that allows my sisters to teleconference in. This is more to let them feel included than to get advice or a decision by committee.

Jeanne, I'm so glad your family conference went well. I'm sure it had a lot to do with your being so prepared. My family - one misstep and you're in quicksand. My family says I listen to them and then go and do what I wanted to anyway. Sometimes you have to.

You go girl!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Aug 08, 2011 1:54 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Family meeting, with upbeat outcome
Kate - you are very organized too, and when you are the primary responsible person, sometimes you do just have to go ahead and do what you feel is best despite what others say. YOU go girl too!

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 08, 2011 9:40 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Family meeting, with upbeat outcome
Jeanne, good for you! Great job. So glad all are helping and working with you. I tried your link to your caringbridge site and it says that you are not listed.

Lynn, what is the name of that website? Has it lauched yet? It sounds like a great resource!
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Oct 07, 2011 1:21 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Family meeting, with upbeat outcome
Hey Pat, you are right! There is no dot in my name:

http://www.caringbridge.org/visit/JeanneGibbs

Sorry about that. Think I'll edit the original, too, in case someone tries it.

I'll have to grant you permission once you log on with your email address.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Oct 07, 2011 2:58 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Family meeting, with upbeat outcome
Pat - the website for families to help manage and care for their LO has not launched yet, due to some technical difficulties. As soon as it does, I'll post the info. here. I think it will be a big help to many, many families when it is up and running. Stand by..... it should be soon! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 07, 2011 9:50 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Family meeting, with upbeat outcome
Lynn, could you send me an email when it does and do a BIG post on the forum so I will not miss it? A Facebook post would help me, too.
Sometimes I am not checking websites for a while due to whatever is going on and this is one item I do NOT want to miss.
It sounds marvelous, smart, practical, and very helpful as a communication tool.
Are you setting it up yourself?
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Oct 07, 2011 11:06 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 16 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr