Dad's Almost Totally Impossible to Communicate With - Help Needed

ImpudentDaughter

[I've been a lurker for a few months, but I'm hoping to get some advice. Thanks, in advance.]

My Dad (82) was diagnosed with early-stage Alzheimer's just under a year ago. Yes, I was floored. But it made sense, too. We'd been fighting for a few years regarding how he's [not] been communicating me in a reliable manner. For example:

Texts. I send him texts, but he'd never gets back to me or even acknowledges them within 48-72 hours after receipt.
Emails. He almost never responds to my emails. Even if I called him to let him know I've sent him a pre-arranged email regarding time-sensitive family business.
VXMLs. He doesn't respond to my voice mails. (but to be fair, I never listen to my voice mails either. Apologies for me being such a GENxr.)

Strategies welcome. I'm pulling my hair our. This has come upon our family very gradually. But hey, if I were 82, I probably wouldn't answer my emails either.

- Impudent Daughter

Emily 123

Hi,

I would read the attached 'Understanding the dementia experience' as a good basic begining document to better understand what might be happening.

I'd try seeing if your dad will pick up the phone. Newer habits and abilities will be lost first, and that includes the use of technology, so things like texts, computers, etc don't get accessed. On top of that, the disease will remove the person's ability to retain memories of what they've done/seen/heard during the day. This is why conversations and questions are repetitive—the disease blocks their brain's ability to store that information. The person will also start having trouble doing multi-step tasks—you need a working memory to know you've just done steps 1,2,3 and now you have to do step 4, and it also is a case of not knowing how to get started because you're not sure of the first step or what would come next.

understanding-the-dementia-experience.pdf

Tam-Cummings-LLC-Handouts-2.pdf

These might be helpful as well…

Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs

https://www.youtube.com/watch?v=pqmqC-702Yg

https://www.youtube.com/watch?v=rO50pVUOlbE

https://www.youtube.com/watch?v=ncKhXQtnyfI

https://www.youtube.com/watch?v=awBm4S9NwJ0

https://www.youtube.com/watch?v=5nw3YUDQJuY

Teepa-multiple videos on communicating-'making visits valuable'.  https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

H1235

Welcome. There could be a number of reasons for his behavior. My mom has no sense of time. He may have read the text, thought he would get back with you later and been completely unaware of how long it had been since you sent the message. He may have forgotten about the message. It could be some technology is becoming confusing. A lack of empathy is also common with dementia. He may not be able to care/understand that he is causing you stress. Some pwd struggle with social norms. This could mean saying inappropriate things in public, but in a simpler way he may not understand what a reasonable(or socially acceptable) amount of time is for returning texts. I would just stick to phone calls or in person discussions if it’s important (forget about emails and text messages).

notequipped

My Mom was diagnosed with Alzheimer’s almost exactly 2 years ago. At the time she had MCI. I spoke with her weekly and would see her regularly (probably every 6 weeks or so). She has been living with us since my Dad was recently hospitalized and subsequently passed away. My mom can still text. I’m not sure that she would know how to listen to a voicemail without assistance. Emails can be questionable. She is now unable to use her iPhone/iPad reliably for anything else. Occasionally she will hear her phone and not respond. It’s not that she doesn’t want to do these things, she’s not able to. She is obsessed with reading the local obituaries online. I have 2 tabs set up, one for the local paper and one for her area on legacy. Even with it set up, she needs help with it daily. Based on what I was expecting, my Mom has gone from 0-60 alarmingly fast. Prior to the end of February, she was driving herself places. Seeing her 24/7 now, I’m pretty horrified by that. Sometimes I don’t realize that she has lost an ability until I see it. Even if she can do something today, it doesn’t mean that she will be able to do it tomorrow.

JulietteBee

While mom lived in ILF, I would txt her EVERY morning at 7:30A, with suggestions as to what activities she may want to go downstairs & participate in. I have her messages set up her with "Read receipt " In the past 6-9 months or so, it indicates she reads my txt in the late afternoon. More recently, she stopped eading them. On my visits, I will see my txt still in her inbox, unread, DAYS later. I gave up! Her newest issue is that she seems to have forgotten how to answer the phone when it rings. I can view her on the camera. Phone ringing, while in hand. No respons3 & no call back.😢

ImpudentDaughter

Everyone, I wanted to let you know that just because I haven't responded yet, doesn't mean I haven't read or reflected upon your kind and supportive comments. I'm finding I have to absorb this information in an incremental sort of way. For the last several days I've allocated an hour/day two sit with my feelings and process my grief. I am planning to go through everything again in the next 18 hours so I can better respond to you guys. It's been tough. But it's been less tough with everyone on this forum. Thank you and talk with you all soon.

ARIL

I am late to this thread but just wanted to say that you have been given good advice, and I wish you well. This is a hard journey.

Over time (a few years) my dad gradually lost abilities to communicate via tech. He used to email me a lot, but that slowed down and eventually stopped. He lost the ability to use his computer at all—which was just as well because it reduced the likelihood of his being scammed. Then phone use became harder. He is in MC now, with no phone at all; he no longer misses it and rarely mentions calling anyone. Sometimes when I am visiting we call a relative using my phone, but his interest in that is slowing down too. I am grateful that face-to-face interaction still seems to bring him some pleasure.

This disease is relentless. People here are great: very knowledgable and compassionate. Come back when you want. (Don’t worry about response times: that varies a lot—from quickly to not at all—and it’s all OK.)