Recently the decline here has been overwhelming – not only to me, but to Greg and the kids. We have trouble comprehending how the challenges for my mother can come so fast. She is confused, can’t communicate what she wants so badly to tell us and her behaviors can be startling at times.
When my brothers or my aunt call, she can answer with, “Yes,” “Oh my”, “Great” or “Better.”
I continue to hear from them, “She sounds pretty good.”
The behavior we see and manage–the directions, dressing and undressing, helping her eat and move from one part of a room to another—is at such an opposite end.
So I wonder if an e-mail updating them is necessary. How specific should I be with them?
I’m not sure. I was wondering what some of your experiences have been in updating others about your caree?
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Jane
Hi Bette:
I’m so sorry for your mom’s continued decline. My first thought/question as I read this was … what is your motive in writing the email? Is it to just make them aware that there is a decline or is it hoping that they will step up and do something to help you out or do you just want to make them aware? If the outcome isn’t what you expect will you be disappointed/mad?
I wish I could give you some hints on what to say other than to say what you said in this blog… this sums up things pretty good.
Good luck with whatever you decide to do.
Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10)
BHJS (dx 2/4/11)
“You’re braver than you believe, and stronger than you seem, and smarter than you think.”
Bonnie
I tried to keep my family updated as well. But, even when they would come to visit my Mom could hold it together for that period of time. And no one ever thought to ask her, “do you remember that I said I was coming tomorrow”, or something of that nature. So they did not believe me and felt I was exaggerating what was happening.
I then started to only update them when she had been seen by a professional – example: Dr. Smith saw Mom today, he says her condition is worsening and shows a progressive downward spiral. Then if they didn’t believe me they could see a Doctor’s report.
This at least stopped them thinking it was somehow all in my head. And they did question even those reports.
I continued the e-mail reports not looking for support but to inform; as it is all a part of the continual decline as she moved closer to leaving us.
Hope this helps!
G-J
I vote for the e-mail, Bette. My Dad was able to pull himself together for visits from my brothers so that no matter how he was doing, they thought he seemed good. And he did until they left! I think you’ll feel better if you send the e-mail because you will have given them the information and let them know that if they want to see her, this might be the time to visit.
As far as how specific should you be, I’d say go ahead and tell them everything if that’s what you want to do. They will never be able to say that you didn’t let them know what’s going on. If they choose to remain in denial and think she sounds good, they will anyway. All you can do is try, and more importantly, do what feels right for you.
Trish
Bette, I’m so sorry for the continued decline at such a rapid pace. It must be wearing on all of you (your mom included). I have to agree with G-J. You seem to want to email them everything (otherwise, I wonder if you’d be asking the question). This not only gives them an opportunity to visit your mom now but also to at least understand more of your situation. They may not be willing to pitch in to help but I don’t see the point in letting them believe everything is “pretty good.” (Unless they choose the denial route, which is possible). That’s coming from a person who likes to give the full amount of information in a situation and let others pick and choose what they’d like to take in (all, some, none).
It seems that when your brother visited not too long ago, he was surprised at how much she had declined (I hope I’m remembering this correctly) and then had been emotional about it. I don’t know your family situation but you have to do what’s best for you and your family and your mom. Showing people what’s behind the curtain may be just what you need to do right now.
Thinking of you and sending you hugs and support in whatever you decide.
kristin
Bette, I agree with G-J. I give full information and have found that family and friends receive the news well, some only later when they really begin to understand what it going on. They no longer say, “Oh, she sounds just fine.” And, to a person, they are grateful that someone is here taking care of Mary when they learn how bad she is.
I am sorry your mother is showing such rapid decline. I am seeing the same thing here, and feel so bad for you and your family. It must be so tough for the kids to witness.
Love and hugs to all,
Kristin
ejourneys
Bette, I’m so sorry your mother’s decline is happening so quickly. In my case, I’ve emailed the details to a particular relative of my partner, who has been very supportive of us. At this point I don’t know how much information has been shared with other family members. I’ve left that up to the relative’s discretion.
My partner can also put up a good front, especially over the phone (we’re geographically distant from the others), though that varies. A different relative had remarked some time ago that it seemed my partner was becoming more obsessive and less reasonable about certain things. It helps that I have medical records and MD office notes that show her true condition. The records help me feel more confident — I haven’t had to present them as any kind of evidence. The sense I’ve gotten is that my partner’s relatives trust me to do what is best.
Sending strong hugs and love to you and yours. Keep following your gut.
Denise
Hi Bette–I think it’s important to share honestly about your mom’s decline. When you’re upfront, you prevent problems down the road, like your brothers and aunt saying, “You never told us it was this bad!”
Your responsibility is to let them how your mom is doing. How they accept that information is up to them.
One other thought: I wonder if the comment, “She sounds good” is more about complimenting you than commenting on your mom’s status. Perhaps it’s their way of saying, “You really take good care of Mom, even with all the challenges of her age and disease.” Of course, it would be sooo nice it that’s what they would just say. Sometimes, though, the emotions can only form a safe sentence.
Jane
Hi Bette:
I have felt very bad about my comment. I didn’t mean it in a hurtful way nor was I implying you had an ulterior motive or anything. I was thinking what I would say to myself … when asking about motive. I hope that I didn’t upset you.
I do believe you should let them know how she is really doing and I agree with Denise about them giving you a compliment
as you do such a wonderful job taking care of your mom.
Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10)
BHJS (2/4/11)
“You’re braver than you believe, and stronger than you seem, and smarter than you think.”
Bette
Thank you so much! I e-mailed my aunt and brothers just a bit ago. After reading your comments, I felt so good about the e-mail.
You’re right, it is important that they know about the declines. My oldest brother is due for a visit in May – it may prepare him better for that visit, and how our house works…
Jane, I did not take your comment in the wrong way at all – I so appreciate all the encouraging words (and any challenges) as they come (:
Again – thank you all so much!
Jo
Bette, just read your post but agree with the great advice already given. As you know I am in similar circustances as you and I feel it was important to not be overly optimistic in my characterization of my parents with family. What I want to avoid at all costs is the scenario described by Denise where everyone else is shocked when the inevitable happens. I don’t give daily updates but when asked, I try to give a balanced response rather than a vague “they’re o.k.”
Bette, you are not responsible for your Mom’s decline, you’re not causing it, and you can’t stop it. What you can do is be there for your Mom. You are indeed doing a great job.
Kathy
Bette,
I’m just now catching up and I am SO happy you chose to send the e mail for all the reasons stated above and especially that you felt good in doing it
I guess when your the last on the comment pole all that’s left to say after all the great responses is , ” I agree with them ”
{{{BIG HUGS}}}
roaringmouse
Bette
I both agree with everyone and am glad that you sent the email. When my hubby had his accident sending out periodic emails helped to reduce phone calls that I couldnt always return to those who were “insistent”. It may be the kind of thing you want to do on a more regular basis to help others understand what is occurring and will help give them a clearer picture of the changes that you see. Six years later I still send them out and many send back words of encouragement to which I thank them for cheerleading me on. I don’t ask for anything in these notes, but have been known to drop a hint from time to time. I do this so I have no expectations.
I am so sorry about your mom’s changes but know that you are an awesome caregiver and are giving her all the love she deserves – that you can.
Thanks for being a great mentor!