Brilliant Analogy

harshedbuzz

This really resonated with me.

https://www.facebook.com/reel/1101251472572052

HB

Damiross

This turned me off. It's too much in-your-face.

I feel like he was also doing it wrong. Send an email out explaining that any updates will be done via email. Don't use text or phone calls. Texting, in my opinion, it's one of the worst ways of communicating. In an email, you can put more information and without having to read it on a tiny screen. Tell friends and family that you'll send out an email occasionally. There's no need to text to see what's going on. He might mention that if they want to see what's going on daily, and come on down and help.

I know the video was about a person caring for a person outside of a memory center. My wife is in a memory center now. I think when I am going to say still applies.

I believe updating people may actually get some to come by and see your loved one. I update my family and friends on my wife's condition at the memory center, something I should have also done before my wife went to memory care.

Sending an email to others about my wife also helps me mentally.

I hate it that people that can come by do not come by. That, unfortunately, is human nature. Some people, right or wrong, want to remember a person as she was and not how she is now. As much as I hate it, some people will not come by.

On an unrelated note, what is with this recording in a vehicle? I see so many people doing this. I just don't understand what's so special about recording in a car.

harshedbuzz

@Damiross

Perhaps my perspective as an adult child and yours as a spouse makes a difference. The Caring for a Parent Board is full of stories where one sibling is carrying the entire weight of a parent while other siblings critique everything they do.

I'm an only since the death of my sister, so my only brush with this were mom's sister and dad's brother who played armchair quarterback regarding decisions mom and I made. My uncle was especially obnoxious given that he was never more than 3 miles away from dad in his home and MCF yet only did a 45-minute drive-by every 6 to 8 weeks.

IME, it's best to communicate with those in a need-to-know position in whatever format works for them. I suspect this is a generational difference. My millennial generation niece prefers text and that's the best way to bring things to her attention. She's my backup POA for mom (no dementia but many chronic issues) and I always keep her current and usually via text. I only email her links if I have multiples or they contain charts that would be difficult to read on a phone— and then I text to tell her to look for it.

Recording in a car is easy. The acoustics and lighting are pretty good. There aren't generally going to be interruptions. And the dash provides a stable mount for the phone to record. In this particular situation, the content of the recording isn't going to upset those for whom it isn't intended like his dad or any children he might have in his care.

HB

JulietteBee

@harshedbuzz, you know I felt that. I've become quite disillusioned by my mom's siblings and other relatives. They are aware of both of our health conditions, yet show no interest in putting skin in the game.

My husband told me to save my energy, so I've stopped calling & texting updates to people who don't deserve updates. Everyone wants an update so they can continue staying afar off, guiltfree. Like the OP, I now feel like telling them, "Come to the house and get your own update."

Thanks for sharing!

Damiross

https://alzconnected.org/discussion/comment/279420#Comment_279420

https://alzconnected.org/discussion/comment/279420#Comment_279420

I cannot blind CC on a text unless buy Ian app that may or may not work. With email, I can send outone email to everyone with blind CC.

I'm not sure if there is much difference between being the child caretaker of a parent or a spouse caretaker of a spouse. My mom was her mother's caretaker for many years. My wife does that same things to me as her caretaker as my grandmother did to my mother.

Thanks fore the insight on recording in a car.

https://alzconnected.org/discussion/comment/279420#Comment_279420

harshedbuzz

@Damiross

I feel like aspects of caregiving are uniquely difficult to the relationship of the parties involved. Lying, therapeutic or not, to the parent who drilled honesty and integrity into your very soul is hard. Watching the person who was always your tower of strength and sage advice fade before your eyes when you need them most is hard.

In many respects, losing a spouse is worse. People expect to lose parents; it's the natural order of things. In a good marriage, you lose an equal partner and all of you dreams going forward all while losing the one person with whom you could share the burden. In a less than happy one, dementia is a trap. The journey can leave one depleted emotionally and financially in the end.

Another difference, in many cases, is that in the case of a parent or sibling, there are likely multiple people who could/should pitch in and help.

HB

sandwichone123

I really like this. He's not saying not to provide updates, just not to do so when you're in the thick of things. Do it when it works for YOU. I might say to local people wanting an update, "yeah, let me know if you have questions after you've visited with her."

H1235

My sil was mil’s DPOA. There are 5 kids. She did not give any updates. She refused to let anyone help and played the part of a martyr. With 4 other siblings I can imagine the headache, but completely cutting us off was horrible. I vowed never to do that when I was appointed DPOA for my mom. My brother does nothing to help, criticizes everything I do and put’s absolutely no thought into anything regarding her care. It took a while for me to accept my brother is lazy and has his head in the sand. I have gone from calling him after every visit to discuss how she is doing to almost no contact. If I am notified there is a medical problem I will call him. No skin in the game describes him perfectly. He visits her and calls her, but has no concerns or thought on the day to day. Even with mom in a facility, she needs so much more than an occasional phone call and visit. (Dentist appointment, new pants, medication change, care meetings, problems with a bill, Medicaid redetermination….) He is definitely sitting in the stands. I really liked the video.

Daisy4U

Such a good thread. In the case of caregiving for a parent and the weight of care falling almost entirely on one child, I've lived it. At first it angered then deeply saddened me that my sister and brother were so disengaged, seemingly satisfied with a two minute phone call to my mom every now and then, so they could say visited. While offering no practical help at all. It took me a long while to realize it's not something I could, or that they were willing to, change. To guard my emotions, I began executing the strategies in the chapter "Dealing with the 'Ghost Sibling': Strategies for the Uninvolved" in Rutha Powers book, "The Caregiving Script". Worked like a charm. I was less stressed about my siblings and could finally focus on what was most important - and do so on my terms. I refer to the resource often because I found it so helpful in navigating my caregiving journey. For anyone interested, here's the link: https://cosyseniorstories.com/the-sandwich-generation