There are several things that are difficult about my mother suffering from dementia, I am certain us sole caregivers could write a novel.
A bit of backstory. Without getting into the nitty gritty, since mom took ill, there has been strain on my relationship with my sibling where it is now to the point we don’t talk and my mother’s siblings have not quite been the best at keeping in touch with each other in the first place. I’ve been having to reach out to family members I haven’t talked to in years. Long story short, I’m the black sheep of my mother’s side of the family.
My mother has been in LTC now for just a little over 3 months but has had a terrible time adjusting. She had falls causing injury thus causing further decline in her cognitive function (now in late stages) and is now suffering with sundowning. It has been heartbreaking being at ground zero to witness these changes day in and day out. And yes, I visit practically every day for 4-5 hours to help with the load as even though LTC is 24/7, government subsidized ones have funding for 3.36 hours per day per resident. It’s the state of this country’s healthcare system but that’s a whole other can of worms.
The bothersome thing I deal with is family has been fairly absent through my mom’s dementia journey. The family, rarely bothers to ask how my mother is doing but out of courtesy I will send updates anyway, lately every two weeks or sooner if there was an emergency. My last update was what I consider a major change in her care plan and NOT ONE family member acknowledged or responded but then they never do. Admittedly, I have not asked the family if they want updates in the first place, I assumed they would. It feels like I’m just sending updates into some dark abyss. I’m beginning to wonder if they want them or should I just leave the updates to emergency updates only?
Despite our differences in the family, I look at updating them as not only keeping family in the loop but I guess also selfishly so that they could never turn around and accuse me of not updating them.
1. How do you handle providing updates to family? 2. Do you provide bulletin style updates or just provide emergency updates? 3. Or if there’s no acknowledgement continuously, would you notify them that you will just stop, leave updates to emergencies only and wait for them to reach out?
See my response to you below my response to YOUR response.
You are very bright and full of insight. You will be fine. They will be what and who they are. Just be polite.
Go ahead and give polite monthly short update if you like. Be sure to throw in something nice, something light. Keep it short. As Geaton says there will never then come the day they can push off their own guilty feelings on YOU by saying you "didn't TELL" them.
Thanks for being so participatory in the Forum. Hope you will stick around here and help answer others because you will have a whole lot to contribute in helping others even after mom is gone in that way, and you would continue to do her "honor". Best out to you.
1) Your post says “Long story short, I’m the black sheep of my mother’s side of the family”. This could mean a lot of things. It’s quite clear from some posts that it can include serious drug abuse to long prison sentences, and has resulted in family members cutting down or cutting off contact. If there are reasons why family members have a very low response rate, that needs to be taken into account.
2) I’d try a post or two that really should get a response. “Unfortunately her left foot was amputated last week. Please contact me for more details”. That should tell you if they bother to read your updates. If they do, it's a good opener to a discussion about the feedback you would like.
I stopped cold turkey with no explanation after the rehab stint. I didn't provide emergency updates nor did anyone seem to want them, though they did call and talk to their loved one when they felt like it.
In your situation, I'd just stop. They don't care, obviously, and if they inquire, simply state that you're exhausted and can't do it anymore. It's really none of their business about your mom's health anyway. The last thing I'd want if I were in her situation is for someone to be informing extended family of my latest incontinence or that I refused to shower today. Seriously, who cares?!
Good luck on this bumpy road, but it will get a bit smoother if you stop being the conduit of news they don't want to receive anyway.
It matters because you need to be really certain that if you're sending emails, make sure yours aren't going into their spam folder. If it's FB, I have a page but I literally never check it.
Are you updating everyone the same way? Everyone gets a "form" email, sent out on the same day? If you're doing it through different methods, I would stop doing that.
I totally agree about sending out the info so that they later cannot come back and claim "I didn't know...!"
My case was different as my BILs did respond to my updates, even it was just a brief, "Thanks". In my email updates I also made it clear if there were any needs, or action required at their end.
If I were in your shoes, since you are getting crickets — and if you feel certain they are definitely getting the emails — I would send 1 last one with the subject line: "Final update on Mom". You give the recent update then write that this will be the last communication on this topic and if they wish to know Mom's status they will need to contact you. Done.
I updated them regularly via text message when my mom was declining. The sister to whom I am close I would talk to on a regular basis; the other one, not so much.
I never received any acknowledgement from the sister that I am not close with, but I sent updates anyway. Because I didn't want to hear it later: "I had no idea she was so bad! You never told me" crappola. There was also no way I was going to give her the out of plausible deniability, so to speak. If she cried to other non-family members at mom's funeral that she had no idea mom was so bad, I would then have called her out then and there and enjoyed every minute of it.
Did it aggravate me to no end that she didn't respond? You betcha. But I was going to make sure she could never, ever say to me that I left her out of the loop.
Keep with the updates to avoid the drama of "why didn't you tell us?" Keep them short and businesslike. It might save you a lot of grief later.
I probably won't let her know that my mother has passed away, until the will is settled.
The way it's looking now, my mother will live forever, so I won't have to!
Can you tell me?
Because the honest truth is they KNOW her status. Her status is not good. It is not good for all of our loved ones trapped in dementia and ill health for so many years until finally they can pass.
Your connection to your mother is much closer and always has been. You were the caregiver. That creates a close tie. You continue to visit often; that keep the tie and the bond close.
I cannot know about your mom's dementia, but would she even KNOW her children at this point during visits. Her life honestly isn't about them now. It is about her routine where she is living.
If you don't wish to send messages, then DON'T. I can't imagine there's lots good to say.
You say you have a strained relationship. How is that being helped by sending messages constantly about how ill or how unhappy or how stressed their mom is.
I would write in Christmas card or another KIND note end of year or beginning of next that you honestly have no idea how much information on Mom the siblings would like to hear, and so you are going to stop sending any updates other than emergent ones for something unusual. And ask that they please feel free to give you a ring ANY TIME for an update if they want one. And wish them the best for the new year, and leave it be.
Just my suggestion. You're an adult and free to do it any way you choose to. Your resentment, however, remains. And they are well aware of it almost certainly. So it doesn't matter a whole lot and I would do it how you are most comfortable. Say a monthly update? Trying not to stress the small stuff that isn't good stuff. Just about any friend, any animal visit, any funny thing.
Best to you and good luck.
They are not involved in Mom's aging care, and haven't been. I was just writing to someone stressed about her texts not being answered by her son that "Our children get their own lives and they move on; that is how it is and that is how, to be honest and in my own humble opinion, it should be."
I’m grateful for your suggestion about the Christmas card; I think it’s a lovely idea.
I never wanted my mom to go through this alone, and it’s heartbreaking to think about how such a kind person could suffer from this terrible disease. It brings tears to my eyes every time. My mom has given so much to our family, and it feels so unfair how she is treated now. Visiting my mom in LTC and witnessing residents calling out for family members who never come, only to have them show up when it’s too late, is something I never want for my mother. I have no control over that though, just of myself.
It was always me that initiated the call or correspondence. I stopped in July and haven't received a call or text from him once. Actions speak louder than words and I received the message loud and clear. Honestly, it was becoming a burden so it is a win win for all involved apparently.
Being in my mid-40s and my dear mom is 75, I really understand the importance of self-care, even though I find it difficult to prioritize. I've been making an effort to focus on it more recently, but I know I still have room for improvement. It’s been a journey of over two years for me to start paying attention to my own needs as well.
I’m afraid my snarky self would send out a dramatic “ibitchuary” calling out how no one could be bothered with her. 😾
I have one SIL I know would not have appreciated updates. She would have taken it as bragging on my part, trying to up her.
My (narcissist, abusive) FIL went into SNF in 2023 early in the year after a cycle of hospital>rehab>home. His "circle" was small because he had self-isolated as well as alienating a good chunk of his friends circle due to his narcissism. What remained of the "outer circle" were his grandchildren. What remained of his "inner circle" were his son (and myself), his daughter (and her DH) and FIL's sister (who lived 10 hours away and had not seen him in 10 years in person, with whom he had a love/hate relationship at best but she made it her personal mission to be his warrior princess)
Of the "outer circle" two lived locally and two lived too far away to visit with any frequency. Of those two locally, only one (my youngest DD) ever visited. But we kept all of them informed of his condition, and as much of the situation as made sense. (They didn't need or want daily updates in other words).
Of the "inner circle" unfortunately the 4 of us locally had far more involvement and time invested than we probably should have. And we felt - in hindsight wrongly - that we should keep his sister as much in the loop as possible.
We did not realize the problem until it was beyond repair.
Not to put too fine of a point on it, but sometimes when people AREN'T involved in the direct care of a person, but they have direct knowledge of their condition, they believe they know everything about it and have as much right to involve themselves as those who are doing the caregiving.
So from experience of having someone who responded TOO much to updates I will say this - if you WANT to provide them with updates - keep them high level. Don't offer details. Don't expect responses.
Keep them minimal. Don't send them as often. If you are sending daily - back down to weekly. If you are sending weekly back down to monthly. If you literally get no response, only send if there is something noteworthy.
If you are only sending the updates as a courtesy, do yourself a favor. Take the time you are spending sending updates, and do something nice for yourself instead. Eat a fun size candy bar. Take a short walk or watch a favorite tv show instead.
I wouldn't bother telling them you are going to stop. If THEY want an update - then put the onus back on them to ask for one.
When my sibling visited this past summer, she accused me of abandoning her because I hadn’t had a break in over two years and decided to take a few days for myself. Upon my return, I received a long email detailing her observations based on everything I had shared with her throughout the year, as if she had just pieced it all together during her brief visit.
I like the idea of taking that extra time and turning it into something for me. I’m terrible for self care - but I appreciate the reality check.
As for your Mom not adjusting to Long Term Care, usually the Staff will ask love ones not to visit for 2 or 3 weeks so that the person can get adjusted to the new living quarters (phone calls are ok). With you visiting Mom for 4-5 hours every day, she will depend on you and not try to depend on the Staff.
I want to share that over the past two months, I’ve been spending 4-5 hours a day with my mom, as I’ve been helping her with meals after her falls. It’s been a tough transition for her, going from being able to walk independently to now needing assistance due to cognitive decline. In just three months since her admission, she has lost 23% of her weight. The head nurse mentioned that some families adapt more easily to these changes, but unfortunately, my family has faced challenges in this regard. I recognize that complex care is unique for everyone, and this has been an incredibly difficult time for both my mom and me.
When my mom was ill, I wouldn't update, unless something major. Sometimes, I just didn't feel up to speaking to anyone.
With my aunt, I look for updates, but haven't been receiving any. The only time I got updates from my cousin is when they were trying to get me to come stay with her. Since then, I've stopped asking because I got tired of them trying to make me the solution.
I think it depends on who you want to update. Big major happenings, definitely.