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?
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.
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.
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.
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.
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)
I would send a simple update to family members via email, and leave it at that. You write one update about your mom to a family member, and then forward that email to the others, and if they want more information about their mother, they can email you with the request. This might be the best option for all.
I think a newsletter with pictures /video would be welcome and beneficial. Also, no out of sight/out of mind stuff either. Send by email with notification settings, so you know the email was opened/read (maybe). CYA.
No one gets to say they were not informed timely/aware of conditions or situation.
If you need to discuss a business matter, do so in writing, request a written response. When you have oral conversations, keep a journal, or refer back to what was discussed and decided in a follow up email.
The paper trail covers YOU, in case anyone has questions layer, including Adult Protective Services, or doctors. You can refer back to your journal info to refresh your memory.
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.
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.
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.
This is something I actually do. I have typed up a synopsis of categories. All phone numbers and purpose including Mom's doctors with addresses and phone numbers; delivery dates for items like incontinent supplies, chart of her meds and how often she takes them; her list of conditions and log in information for My Chart which is linked between her doctors and hospitals; meals - each preference, should it be cut up, ground up all in little containers better for her to feed herself. When she showers to have her dry her hands as she likes to grab the sink getting out and wet hands is like skating. TV shows she likes to watch. The people listed on her speed dial on her captel phone, which is for hearing impaired and types the conversation. Basically all techniques used in daily care. This is emailed to my children. If anything were to happen to me I want whatever is in my head for daily routine with Mom to be at the hands of anyone stepping in. I also keep a copy on the side of the frig. Any changes I simply edit and resend. Another suggestion would be to make a Facebook page just for your loved one. You can include pics, scenarios, funnies, and this way loved ones can log on to her account instead of you. If they see it fine, if not, its fine too. If they don't FB either well you can't reach everyone let the chain of family reach them Im sure somehow they will know. Hope this helps.
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
There is CaringBridge and that works for many families When my Husband was on Hospice they were just starting to use Tap Cloud and that connects everyone as well. https://www.tapcloud.com
So sorry you are going through this. My Mom passed away this past January. She had been in assisted/memory care for approx 7 years. I went to visit her 3 to 4 times a week, staying longer on a weekend day, as I worked during the week. About every other week and when something significant changed or happened, I sent out an email to each family telling of her condition, any changes and what times and days would be best to visit her as she loved visitors. I included when doctor appointments were and holiday plans and the outcome of both. That is the best way of communication as you are only one person and need to care for yourself also. Bless you for caring!
If I had the journey we took with my husband's father to do over, I would have kept a journal of all the things that happened daily and I would have shared only a general version of how he was doing with people outside our home. No one who isn't caregiving with you has any understanding and too many details just leads to everyone telling you how they think things should be done.
In the beginning we shared every detail with my husband's sibling. It quickly became clear that she saw her role as our overseer, rather than as a partner in the journey.
First of al if tey want to know whats going on they should come visit once in awhile. BUT in liue of that if YOU want to give a monthly update (do they want a monthly update?) Just use an email. give high points.
I agree with lacy island. I would only send email updates to those out of town. All others in the general vicinity who can visit, should visit, and I would not include them in the emails.
Make sure the people who are included actually want to receive the information. I get messages and email from four family members that I really don’t want to receive. I’ve removed myself from lists, but a cousin keeps putting me back on.
How about either a blog or an e-mail, based on a set timetable? Weekly, might work. Hit the highpoints only; you don't want the task to become a burden or add to the stress. For a loved one residing in a facility, some families have found maintaining a communication log by the bedside us useful. The log can be used not only by family members but by physicians and staff as well. Just be sure to make sure all parties are aware of its existance.
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!🤔
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. : (
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.
Nice of you to think of others this way. I just send email updates to those who seem to be truly interested and show me by asking now and then how my mom is. I tell them some little story about something she said that is amusing or about a drive we took to the mountains and attach a nice photo of her. I don't include any news about bad episodes or medical problems, except to my brother and the son and grandson who have helped me care for her. If people who live in other states ask if they can do anything, I let them know how wonderful it would be for her to receive a card with a photo of them with their dog or cat. I don't tell them that she is really only interested in the pets and doesn't remember the people. My mom so far is doing well. I don't know what I'll say later on, but for now I tend to send notifications individually, not in a newsletter sort of way.
I agree with those who have posted to use caring bridge. This allows those who wish to be informed to have access and those that are not interested in remaining out of the loop. It can be very time consuming to send emails, write letters or make phone calls. Let everyone k ow where you are putting the updates, if they want further details, they can visit mom.
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.
Sort of a different situation here. I am one of 6 siblings, all of whom take an active interest in Mom, who lives in AL. We have sort of split up the duties, so it is helpful to have and interactive place to bring up issues, updates, photos, fun stories, etc. We are using Slack to do this, and it has morphed into a place where in addition to the Mom Update Channel, we have a holiday planning channel, random channel, etc.
Email for us got to be cumbersome. This way all replies, etc. are in one place we can all access.
But this is probably more useful where you need a lot of interaction, vs the one way flow of information you are talking about.
I just used whatsapp to connect with anyone who asked. put it out there once and it was a group that got updated whenever needed to put out info. no long distance charges to UK or US or Canada.
There is some good advice here & Gardenartist mentioned things to think of. Sounds like this is something you want to do for family, which is nice on your part. But if individuals want to know how she is they can call. Be careful what you put. Some could be resentful that you have guardianship & may think differently how something is handled & try to start problems. Siblings can be nasty if they think there is money somewhere. Your intentions are good & wonderful you taking care of mom.
Just to clarify, some family members want to update others. I don't get the impression that they necessarily want to be updated. If this is true, then you should spend minimum effort aggregating your mom's info for updates. CaringBridge.com seems to be the best option. You create your mom's page, and send out the link for her page via email to the people you want. When you post something it sends out a email to your email list and if they are interested, those people can go to the site. They can leave comments. Good luck!
Choose whatever is easiest for you. But, copy to every single family member you can think of so no one is left out. I would prefer email myself - no stamps, no lost mail, etc. Create a d-list with all of the names you collect so you won't have to retype each address each time you write. Send out initial email and ask for email addresses for everyone and to share your notice with children/grandchildren, friends, etc that would want to be in the loop. If you have older folks who may not use computers, you can print your letter and mail those. One of the suggestions below was good - tell them in advance that you will reply to questions in the same group format that you send info. That way you won't get caught up in the middle of someone's arguing. Very nice of you to try to share info. Just stay out of the drama that exists between others. It's all about the mom.
My family didn't seem to care, until a SIL saw ma, and immediately by oldest brother had to call me. I said Oh, she hasn't seen ma in over 2 years, I guess that would be a shock...
Dear Anon, I applaud and honor your desire to provide updates. I was mom's primary caregiver for 5+ years. Both sisters refused to support me in any way because neither have ever cared for me. But 'this', obviously NOT about me but about our mom. They refused to receive my attempted civil and sterlized (of any hint of 'us'. After a few tries on my part, they both separately accused me of being hysterical and "the high-strung" one who stresses out about everything (not true, but they don't know me). I finally gave them about 45 days notice that I was moving out and leaving the area, so it was 'their turn' [I didn't actually say that - it would've been pointless]. Now, though, neither of 'em will communicate with me at ALL. What a sad shame all around--so again, I wish at least one of my sisters had a modicum of your better nature!
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.
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.
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)
No one gets to say they were not informed timely/aware of conditions or situation.
If you need to discuss a business matter, do so in writing, request a written response. When you have oral conversations, keep a journal, or refer back to what was discussed and decided in a follow up email.
The paper trail covers YOU, in case anyone has questions layer, including Adult Protective Services, or doctors. You can refer back to your journal info to refresh your memory.
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.
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.
When my Husband was on Hospice they were just starting to use Tap Cloud and that connects everyone as well. https://www.tapcloud.com
Bless you for caring!
In the beginning we shared every detail with my husband's sibling. It quickly became clear that she saw her role as our overseer, rather than as a partner in the journey.
BUT in liue of that if YOU want to give a monthly update (do they want a monthly update?) Just use an email. give high points.
Joanne Flatt,
Louisville, Kentucky
Email for us got to be cumbersome. This way all replies, etc. are in one place we can all access.
But this is probably more useful where you need a lot of interaction, vs the one way flow of information you are talking about.
- MMS texts
- Facebook Group Messenger
Send out initial email and ask for email addresses for everyone and to share your notice with children/grandchildren, friends, etc that would want to be in the loop. If you have older folks who may not use computers, you can print your letter and mail those.
One of the suggestions below was good - tell them in advance that you will reply to questions in the same group format that you send info. That way you won't get caught up in the middle of someone's arguing.
Very nice of you to try to share info. Just stay out of the drama that exists between others. It's all about the mom.