The Big Family Meeting

Judide65

We held our first "in-person" family meeting this last Saturday.  My EO/LO has been involved with the planning of this meeting for the last couple of weeks.  Unfortunately, on the day, she thought we were just having a BBQ.  Needless to say, when we discussed, as a family, her current diagnosis and situation, she was overwhelmed.  Said she had no idea she was sick.  There were many tears and hugging.  After a looonnngg conversation of positive comments, confirmation that she is extremely important and that we want her to be as successful as possible, she walked away with 2 thoughts:  She is dying and that she doesn't want to leave my mother (they live together).  

Today, she is having a "normal" day.  It's like the family meeting never happened.  I am going to start the legal POA activities and need her to be onboard and somewhat understanding when we meet with the lawyer.  She is still somewhat lucid most of the day and I need to take advantage of it. I have a plan B (full guardianship) if I need it.  Which, of course, I hope I don't. 

Thanks for listening......

CatsWithHandsAreTrouble

Thanks for sharing about your family meeting! That is something we desperately need to do with mine but we're just not sure on how to go about it. My dad gets so confrontational over the slightest things and often misconstrues what we say. And he's not the PWD! 

The good outcome, or as good as it could have been, from your family meeting is putting wind in my sails in a way. I have to figure out how to get dad on board and hearing that others are getting their meetings done is encouraging for me. Thank you!

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Judide65

Victoria2020:  Thank you for the response.  Some of the family want another meeting with my EOLO to discuss finances.  I'm putting a stop to that as I cannot watch my sister go through another overwhelming "meeting".  I have watched her for 2 days now - completely stressed out.  This is not a good situation for her or any of us.  

I do need to get her to see my lawyer.  I think the "last minute" idea is good and I may use it.  

Again - thanks for the ideas.  I am continuing forward with more tools in my toolbelt. 

ButterflyWings

Judide - I am so happy to hear of your decision to take a different approach. An "intervention" type family meeting is not the most productive or even the kindest way to go with dementia. 

Best case they forget it and it is a colossal waste of time. Worst case, they can't really comprehend the point but understand (and possibly hold on to) the most hurtful or distressing aspects of the experience and conversation. I would not do that to my worst enemy and definitely not a cherished LO who is already facing the most horrible situation imaginable.

Imagine the pain of hearing over and over that you are dying, there is no cure and you will have to be managed like a child basically, starting really soon thus being a huge burden on others you care about.  Some of my DH's friends confessed they were afraid he might not be willing to live like that and worried he might self harm. They didn't know him as well as they thought - he is very brave and stoic, but in a very short time he had anosognosia and suddenly zero awareness that he is impaired in any way.

So, for those (many) PWDs who have that condition (anosognosia) due to the brain damage, it is beyond irritating, ridiculous and even infuriating for family or friends to claim they are ill and must relinquish their lives and plans to someone else to dictate. Leads to ALL kinds of pushback and drama, lots of hard feelings and stress for the primary caregiver and the PWD LO.

So, we learn here to work smarter, not harder. That is what you are doing now, and I agree 100% with everything Victoria suggested. Here are a couple of links that can help for you and the family members that want to learn how dementia works. And why it is kinder and wiser to work-around it. These quick reads, and many more tips on this forum are a much better use of time than family meetings that include the PWD LO, for all the reasons I mentioned above.

Wishing you all the best. I'm sorry this is happening to you all. She has a good advocate in you.

Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

Do read this excellent article and share with interested family and friends:  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

microgirl

Your meeting is so encouraging although lots of tears and emotions! We need to move forward as well. There’s a lot of, “yes, I know we need to do this “, yet, we don’t. Hopefully this will be the catalyst! Best wishes

suprnut

Any suggestions for episodes when the PWD wants to "go home" and is very agitated and not responding to redirection? My neighbors, wife is PWD wanted to "go home" yesterday evening and this morning has no recollection of the episode. I understand that is typical, however do others just "wait it out" or try other ways to change their focus on wanting to go home?

Thanks for any ideas.

Stuck in the middle

Suprnut, I haven't had that problem but others have had success with getting in the car, driving in a big circle, and ending up back where they started.

Stuck in the middle

You can start a new thread by clicking on "add topic" near the top of the page, and more people will see your question.

microgirl

Hi, my dad went through that a few months ago.  He kept saying, "when are we going home", and of course he was home.  When asked where home is, he gave an address of the house that they lived in when first married.  He did that for weeks-not every day, but fairly often.  It was very unsettling for all of us.

JJ401

Family meeting

I think it’s a great idea, but I think it should be family without the person with Alzheimer’s — a family meeting to discuss the diagnosis and hopefully get everyone on board with a plan going forward.

I actually had a meeting with my husband’s daughter last fall. She’s the only family that needs to be fully aware. I arranged a time I could meet with her without DH and told her I wanted to meet with her alone. DH is aware he has ‘memory issues’. He knows he can’t handle finances. But, he still thinks he has abilities he actually doesn’t have. Speaking about this in his presence would be upsetting to him, and I saw no need to upset him. Luckily, for DH and me, she seems to have processed and accepted the information I gave her.

jmlarue

I know that the laws are different from state to state. Here in Washington, it was important that I had a signed Durable Power of Attorney for both finances and health care for my DH. The Durable part of that says that it takes full force and effect on the date of signing. It was absolutely required by numerous banks, medical groups, hospitals, etc. I am primary on the DPOA and our eldest son is secondary (but only if/when I am no longer able to serve in that capacity through death or disability). Here's the thing with family meetings - if there is any hint that there might be a power struggle between family members on who should hold all the cards with the signed DPOA for finances and health care, the PWD should not be present. Once a decision is reached on who will be the primary on the DPOA's, you would do well to make sure that all concerned are clear about what that means - if any dispute should arise later, everyone needs to understand that that one person has the authority to make all final decisions. Trying to get anything done by committee or even majority rule is pretty often unworkable and only leads to family rifts, hard feelings, and distress for the PWD. When a family can't work together for the best interests of the PWD, it leaves the door open for a legal fight where a judge will likely appoint an independent third party Guardian Ad Litem to handle all decisions - at a cost - and no one will be happy with the outcome. Just thought you should have a heads up.

Judide65

jmlarue - I agree completely with your comments.  I have already begun the legal POA process.  I have spoken to my EO-LO about this and she is onboard.  I am hoping to get that done next week - it's already scheduled!