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anonymous957160 Asked November 2019

Currently I am the guardian of my mom and want to update family on the condition of mom on a monthly basis. What are some neat ideas?

We have family members that choose not to associate with other family members and want to be able to update them on the condition of mom. Are emails the best? Or some type of news letter?

GardenArtist Nov 2019
Perhaps the first questions you should ask arise from the frictional relationships of the family, especially if any of those family members are hostile or critical of you.

The second issues arise from the fact that you may need to consider how much information regarding your mother's condition should be shared.  Certainly financial information should not.

However, I can envision a nice, cheery newsletter on what you've done together, activities at the memory care(?) facility, Mom's accomplishments, and general health etc. 

Newsletters presumably sent by snail mail will cost even nominal postage, and some family members (especially those thinking ahead to their inheritance), may decide to scrutinize your expenditures.     E-mails might be better, but they can also be forwarded to others (including attorneys if some of your relatives are contentious).

Also think carefully about (a) how you came to be guardian, while others did not, and whether there's animosity arising from that, as well as (b) you could be opening yourself to criticism from anyone who doesn't think you're doing a good job, or not handling responsibilities properly.

That's not an inference, just a warning from having read so much on this site about nonparticipating but interfering relatives.

Your profile indicates that your mother has dementia, and is only 67.   Is she able to convey her thoughts as to what she would like, and is she still able to recognize family members?   Are the family members in your area?  If so, will they visit?  

I think her thoughts are more important than those of the family, as it's her life that's being discussed.      I would however make an exception for declines in health, accidents, hospitalizations, etc.   Family should be aware of these, especially if you need assistance in the future.   

What I would do is try to bring the family together in terms of providing Mom with cheery information on their activities, with photos for an album that you can help her create (it will help occupy her time and may even be helpful to maintain links with the family.

And hopefully reaching out to the family for that kind of participation might avoid the friction that seems to be latent (and not just in your family either!

You seem to be a kind, thoughtful and directed person; I hope you continue to participate here and update us on your mother's, and your progress.  
jolobo Nov 2019
Great advice GardenArtist! I had set up a private (at the time called "Secret") FB group with close family members. It was not just to update but to hopefully open the gate for anyone wanting to help and therefore not duplicate whatever they did by posting what they did. That turned out to be kind of a disaster! First of all, my niece invited more distant relatives that I did not want there and it was embarrassing to have to delete them and explain. And as it turned out, I was pretty much the only one posting, because I was mainly the one who did anything! I did not know at the time that it would all fall on me, which from what I have read here, seems to be par for the course that it ends up being only one person who is the caregiver. And I was criticized by one person in the group (which was of course, the one who never did anything at all for my mother, including visiting) for basically showing off what I had done! NOT my intention at all. But I would say do not bother to update at all. If they really want to know, they can call you. You have to protect yourself. I learned the hard way.
Apeter Nov 2019
My Mom lives with me 20 years now. In the beginning I updated by phone calls. As the years went by and no one ever offered me a break I now update only those who ask. Which in my case so far has been Zero!🤔
Davenport Nov 2019
Same here; no one ever asked, no one ever offered me any support in any way--I was at sea in a survival boat. I eventually cracked after straight-up asking my 2 sisters for at least emotional support and was ignored and even reprimanded for even asking. Now, 1 of them has perforce stepped in to keep mom @ home, but she refuses to contact me or respond to my request for updates. : (

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BluebirdKY Nov 2019
I have four sisters who can't stand each other. I was our father's POA and handled everything from diagnosis with cancer to his funeral and estate administration. Each sister wanted to be kept informed but refused to speak to each other and a few refused to speak to ME. I solved the issue with a group text. EVERY update and discussion was in the group text so that everyone had the same info at the same instant and no more complaints of hearing things later than the next sister. If they contacted me directly, I told them "I do not correspond privately. Please use the group text." You can stick to your guns and stay out of the drama so much easier that way. Group text. Worked for us.

Joanne Flatt,
Louisville, Kentucky
Psyclinz Nov 2019
Great idea Bluebirdsky! Thank you, I have a very similar situation - I'm going to use your strategy :)
okhoneybee Nov 2019
To be quite honest I wouldn’t worry about updating them. If they don’t take an interest in what’s going on by asking then they’re not concerned about your Moms welfare., Sounds harsh but I live in this world and used to do detailed updates by email but I no longer do anything. If they care they’ll contact you. Don’t stress over something that doesn’t matter to them.
Davenport Nov 2019
I learned the hard way that you advice is spot-on!
Hedgie Nov 2019
Take a look at the Caring Bridge website and see if it might be appropriate for your purposes. It allows you to post updates, questions, etc. Once you have established the site, you can tell family members and friends....they can log into the site and see the updates you have written. When you make an update, the people that have signed up are automatically notified that there is an update.
Geaton777 Nov 2019
Yes, CB is a great venue! I know many who have used it -- extremely helpful.
Sendhelp Nov 2019
A nice idea you are having. Times are changed, and you would need Mom's permission to say anything about her to others, especially of a medical nature.
There are HIPPA laws.

If she reads it, would she want you to send it out to others?

Have you been asked by anyone in the family for updates?

Imo, please guard her privacy, now that you are her guardian. Sharing what you and her did some days can be a good thing. Try a once a year Christmas letter, and include her news in that?

I understand that everyone is different, and will not agree with me. That is okay.

DawgDew Nov 2019
I would suggest using the web site titled CaringBridge (www.caringbridge.org). It's a free site that helps keep family, friends, etc., as "informed" as they want to be (or not)! Whenever an update is made about someone's condition(s)/journey or whatever and the site sends out an email to anyone signed up for them and then they can decide if they want to read the update or not. It makes it easier to make sure everyone is getting the same information at the same time and what they do with that information is totally up to them. They have a cell phone app or you can use a tablet, laptop, PC...none of these? Go to your local library, Senior Center and someone will take the time to show you how to access their site! Hope this helps! Sue
Grandma1954 Nov 2019
CaringBridge was the first thing that came to my mind.
Countrymouse Nov 2019
I commend you for wanting to provide your family with regular updates. Yes, what's wrong with a pdf or word document once a month, emailed BCC to whom it may concern.

I would suggest respectfully that as your mother's guardian you have quite enough on your hands without trying to work round other people's conflict. As long as it causes you no additional trouble, fine; but if they start expecting customised updates according to their "in" or "out" status in a given group - tchah. Let them sort that kind of thing out among themselves.

Tothill Nov 2019
My sister in law set up a Caring Bridge site for her husband. He is on the wait list for a heart transplant. She puts general updates on the Caring Bridge site, things to keep friends, coworkers etc informed, when he has had emergency hospitalizations.

Additionally she gives greater detail to specific family members via Facebook Messenger. I get direct messages from her, but I believe she has a group chat set up for most of the family. I do not worry that she may share greater detail with other family members, I am happy that I am still part of her family. (long story of remarriage, divorce and choosing the family to keep)

dogparkmomma Nov 2019
I think it is not a hipaa violation to share her general medical condition. Very general. But sharing of private medical such as she a UTI or a broken leg could be. I guess the the question is, what would she share if one of these family members would have called her on a phone. You are in essence speaking for her.
you might think you should be updating people as part of your role. And people who love her should know how she is doing. But you are under no obligation to do that and the more info you give out, the more information can be potentially twisted. Not saying that will happen.
so ask yourself, Why do you feel you want to do this? Is you really feel you should, set up Caring Bridge so that they have to make some effort to get the information. You could be doing this for ten years or longer so start out only doing what is necessary. Communication is tough and keeping track of who gets to know what is harder still. Your time might be better served taking a nap or a walk.
belindaparis Nov 2019
I totally agree, especially if family members do not make an effort to call or visit. Additionally some might not ever make the effort if it is spoon fed to them and then the LO suffers from feeling neglected. My 83 year old H’s 2 children have never been warm and fuzzy, they were never a close family. But I expected that they would take more interest in their dad- who was a great generous dad- when he is now in middle to late stages of dementia, still living at home. I guess I shouldn’t judge, but I find it appalling that, even tho a daughter lives 30 min alway, they visit or call 3-4 x’s a year. The next time they call he might not know who they are. I would be happy to fill them in about everything but I refuse to chase them down and force them to listen. I have far more pressing duties. BTW we are married for 25 years.
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