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jimmy spako wrote:^ That is awesome, thank you.For German speakers I can recommend (my friend) Jörn Klare's book "Als meine Mutter ihre Küche nicht mehr fand" ("When my mother was no longer able to find her own kitchen..."), dealing with his experience of a parent with dementia. It's part memoir, part doing the rounds and talking to experts from various fields/perspectives. It helped me a lot at the beginning of the year when things were most shocking and tough. I think it's at least been translated into Italian, maybe other European languages as well.Very surprised there's no English translation of that. Have his people shopped it around much? I reckon a few places would snap that up in short order.

^ That is awesome, thank you.For German speakers I can recommend (my friend) Jörn Klare's book "Als meine Mutter ihre Küche nicht mehr fand" ("When my mother was no longer able to find her own kitchen..."), dealing with his experience of a parent with dementia. It's part memoir, part doing the rounds and talking to experts from various fields/perspectives. It helped me a lot at the beginning of the year when things were most shocking and tough. I think it's at least been translated into Italian, maybe other European languages as well.

It's very specific to Germany in parts. I'm not sure if there is already popular literature in English that would make an English translation somewhat redundant. It deals a lot with attempting to cultivate the notion that there is a life well worth living beyond the fading and loss of autobiographical memory and tries to get beyond our grieving and help us accept that (among other aspects it covers). The only issue for me over time was the fact that it doesn't apply in certain ways to Lewys Bodies, for better or worse. Not all forms of dementia express themselves the way popular perception of dementia would have it. This may be obvious, but wasn't so for me. Jörn's experience was with a relatively "classic" case. Lewys Bodies on the other hand is not necessarily characterised by the sufferer forgetting who people are or gradually fading as much, but more so by potentially rapid radical alterations in personality (front brain stuff as I have been led to understand) and loss of inhibition that can make people hard to care for. We haven't observed this yet and I don't know if I am even prepared to prepare myself for that. Sorry, whenever I begin to write about this I oscilate between kind of clinical speak and the void. I am just trying to focus on the next step. I got back to see him and introduce him to my partner and son for the first time in June. It was great, though very heavy and difficult. And the week before last I booked tickets to see him on my own in six weeks. I call him as often as I can and he talks to my boy too, though the little dude can't say more than "bow wow" and "bye bye" back. I am incredibly lucky that my siblings, who are closer, have had his back from the beginning and gotten him into a stable care situation and sorted out his affairs. They are the best. Aside from the extended episodes of paranoid hallucinations (which I do not mean to gloss over at all, we have just become used to them and he is still able to come out of them and know he was hallucinating) my dad has changed radically in a good way, has opened up emotionally and expressed regret about things for the first time and the wish to make the most of his time with us. I am very grateful for that too and will take it as long as I can.

I think of this thread often and have hesitated to bump it, because I know that it is painful to be reminded of the topic when you are struggling with it or have done so in the past.I came back from the US on Friday after getting to see my dad for the third time since the diagnosis. He got to see my little dude for the second time and spend time with him. I'm going back on my own for Thanksgiving. Then back again with my family next June.I am very grateful that we are still able to interact meaningfully. But his condition has declined significantly, he was really off most of the time and we had to keep the visits relatively short compared to last year, and kept to his room, my mom's place and the tiny beach in downtown Port Angeles.My sister gave me all the letters I wrote him and he saved over the years and I have been reading them, and reading some of his emails of recent years. Ours was not an easy relationship, but there was a whole lot of love and support in there too, it's easier to see from this vantage point.My little dude and my dad are passing one another in slow motion, going in opposite directions, one of them expanding, one fading. It is hard, maybe impossible, to grasp the reality behind that description. Over the months, their main connection has been through making animal sounds at one another over the phone, meow, bow-wow, all that good stuff. There was a call where the two of them just said "coocoo" to one another for like a minute and I thought "this is probably the apex, the best they will ever understand one another". I hope they get another visit together.Feeling pretty fucked up right now.

Much love and peace to you and yours, friend.

Condolences AJ.

I'm so sorry, Angus. Let your desert elegies ring out.