Advice for calling a friend who has dementia?

TLDR version: I’m virtually certain that a friend I have not seen in a few years has slid into dementia. I just realized I have a phone number for her and would like to call, but would appreciate tips on how to talk with her as I have almost no experience being around people with dementia.

LONGER VERSION: I have an old friend with whom I’ve shared many experiences despite the fact that we have never lived in the same town (we met when she was working for an American business group in Taiwan and I held the same job in Indonesia). The closest we ever came to being “neighbors” was when she lived on the island of Oahu and I was spending a lot of time on another Hawaiian island, so we got together fairly often.

I was around for two very significant events in her life: One, the day she returned to Oahu after staying with me for a few days, she found a lump in her breast which turned out to be an extremely aggressive breast cancer that would have killed her if she were not viciously determined to fight the insurance company to get the best, most experimental treatments available.

Second, her partner of many years left her and kicked her out of his house when she was finally cancer-free and able to marry him (she was in an insanely protracted divorce proceeding for over 10 years). I helped her go through all her paperwork and pack up her office in the days just before she left for California to start a new life there.

We’ve written occasional notes (she uses FB Messenger, which I hate) but it’s become clear she is no longer with it, as she tells me things/asks me questions that show she does not remember any of the above. (Just a few minutes ago I got a message asking her what island I live on.) Or she’ll tell me she hates Messenger, will I please email her - then I email her and get no response. Or she’ll post a bizarre comment on a photo from over a decade ago that is on my (completely defunct) Facebook page.

Dementia is a very credible explanation, as her mother lived for years with Alzheimer’s, and also I think some of the cancer treatments she received can result in diminished memory/intellect. So, quite possibly a double whammy of bad genes and physical stress on her body, plus all the personal issues she’s had to deal with (the last time we communicated during which she still seemed “with it,” she told me that her daughter’s estranged husband had just committed suicide/OD’d; her daughter, to be brutal, is a bit of a f**kup and has been a big stress for her mother).

I just discovered I still have a cell phone number for her, which I’d forgotten since we’d been in such different time zones for much of the time that it’s never been our primary method of communication. But she is in California and I’m in Hawaii now, so I can call. While it’s possible it is not in service, I will assume for the moment that it is, and give her a call. But I have no clue where to begin, other than to be kind and patient and hope she recognizes who I am.

If Dopers who have experience dealing with old friends with dementia have advice for me, it will be gratefully accepted.

I can relate to what you’re going through but I have no helpful advice to give except to advise you (from personal experience with my oldest childhood friend) to adjust your expectations to the point where very little of the person you once knew exists anymore. If you do make the effort, the experience will probably leave you deeply troubled/haunted.

Two of my older relatives developed dementia in the last few years (both have since died). In both cases, their main deficit was memory. They would forget things I told them only minutes earlier, ask the same question several times in one conversation, etc. One of them also would have delusions; telling me that they were packing up to move (when no move was planned), that animals were living in their closet, and so on. The other had fewer general cognitive issues other than memory; he was still bright and cheerful and pleasant to talk to. However, I am quite sure that both of them greatly enjoyed talking with me when I called, despite their deficits.

I would go ahead and make the call, but keep your expectations low. Try not to be distressed if she doesn’t remember things you would expect her to remember, or is unable to process and understand things that seem simple to you. Make the call more about giving to her. And one practical point – many people with dementia, including both of my relatives, exhibit a behavior called sundowning, where their dementia is worse in the late afternoon and evening. So make the call in the morning (her time). Best of luck to you.

Can you call when someone is there with her? Even with a video call it will help to have someone there in person who can assist with the communication. And if necessary let you know if she’s not connecting.

I don’t know enough about her life/schedule to be sure of anything when I first call, but thanks for the idea - it might be a strategy to work toward. I may be able to connect with her daughter, who if the internet is to be believed seems like she might be living with her mom now. @markn_1 : thanks for the tip about sundowning. I am aware of the phenomenon but hadn’t put it together with this situation. If you hadn’t mentioned it I would probably have called her during her evening because of the time zone difference, but I’m an early riser so I’ll make sure to call before it gets too late in CA.

It may be useful to you to expect that some of the time she might seem pretty normal and then suddenly drift away. We had a friend with dementia who had been a salesman (furniture) all his life, and for example, we began a conversation with him about furniture where he seemed to be perfectly himself (the salesman!), then suddenly he turned to my husband, picked up a hammer off his desk, and said “what is this?” Can be a bit disorienting if you aren’t expecting it. I hope that you are able to connect with your friend the way she used to be, even for a moment. We were grateful to be present with our friend whenever it happened, glad to know he was still “in there” somewhere.

I have no good advice for dealing with Alzheimers - however, what I would like to share is that, in her 70s, my grandmother started to develop severe dementia symptoms, and nearly everyone assumed that Alzheimers was what it was (one very clear memory I have of this phase of her life was when she became convinced there was a baby crying in between the corridor and one of the bedrooms, and was trying to use a butter knife to lever the wall apart to get to it)

My grandfather wouldn’t take this for an answer, and kept taking her to doctors for tests. Eventually it was discovered that she actually had an aggressive brain tumour. They operated with total success, and she regained her faculties and lived another 25 years. The only long-term effect was that there was a 4 or 5 year gap in her memory, covering the time the tumour was growing.

I’m just throwing this out there, because you say your friend has already had cancer once, and I believe that’s a risk fact for getting other cancers.

Music often triggers memories and brings mood up for those with Alzheimers. Perhaps you can mention a song you might both know. Sundowning is real so make use of the fact.

I suggest that you do try to contact her daughter to make sure that someone is aware of her situation and can help her when needed. It’s a very tall order to help someone with dementia, but I’d want to be sure she is getting the help she needs.

Bless you for making the effort to reach out to her.

This. Take lots of deep breaths, and remember that she’s not doing this deliberately, it’s a symptom of a medical condition. I’ve had far too many friends freak out on their parents because they can’t seem to accept that their behavior isn’t deliberate.

Just roll with the flow, answer the same question for the fourth time without getting annoyed, and if she doesn’t remember something, just let it go.

We’re dealing with this with my mother now, and as I keep telling my sister, you have to decide: do you want the remaining years you have left to be one long argument, or not? I choose not. Let them ask questions over and over again. Don’t force them to try to remember the things you want them to remember. If they start talking about something that happened in 1960, let them talk, since their memory of 1960 might be more clear than their memory of yesterday.

And be strategically cynical too. If you screw up today, they probably won’t remember it tomorrow, so don’t beat yourself up over it. Just act like it never happened.