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?
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!
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.
What usually happens with a long term illness(es) is that the longer it goes on the help seems to fade. At the beginning early stages of a loved one's sickness all hands on deck but then things pither out and it's usually left in the hands of "the one". Every family is the same.
I would send the info to fill them in and let it go. If they respond great, if not, let it go. But remember that when a wedding invite or something is sent to you for one of their children; don't respond unless you want to.
Focus on yourself as well. This Dementia is a beast of a disease. There is a reason why it is called "The Long Good-bye". Like a downhill staircase, where they go down one stair, plateau for while and then descend to the next downward step. It's like playing a chess game, you always have to be thinking about your next move.
It's like broken a record after a while all of us complaining about why our siblings don't help out even though, speaking for myself, we had great parents. People want their mobility, their autonomy. Others aren't cut out for it or simply can't bare to see Mom like this. Some families don't have adult-like grown children who have the maturity to care for an elderly person.
Folks, I had to leave the Northeast and head South to care for my ailing mother. There were no greater parents. I work remotely. The elderly are not being cared for the way our parents' generation just did it. All of the women are working now and families are scattered across the nation.
When baby sister didn't visit for one entire year, I decided to head South. I took control. She tells other family members, "I can't believe our sister took my mother from me". When baby sister recently took sick she called and said Mom I will need food and are you coming up? I really think my sister thinks she is still a child inside. A little girl with her mother by her bedside. This really opened my eyes.
We can't attend a family wedding this Summer because it's not feasible to travel with an elderly frail loved one and too costly for me. The little money I have will be put into my retirement so I won't be living on popcorn in my old age...get the hint Missmaple.
We need this forum so that you won't feel like you are standing alone. I'm stronger now inside, then I have ever been. For the longest time I just read this site on a Saturday but over time I thought with my experiences I could share some valuable information, even if it's just one new thing that gives you some support and hope.
I believe you Honor your Mother and Father. In your mother's old age, show her your appreciation.
We are all called to the test in this life and it doesn't always come in the measures in which one may prefer.
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.
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.
This is great advice you’ve given and I cannot thank you annd everyone else who has taken the time to reach out annd respond here on this forum enough.
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.
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.