I feel an impulse to start writing here again. I want to write about several impersonal topics but before I do that, I think I should describe recent events in my life. This is probably the first time I’ve written here about my life without intending to illustrate some point or other that applies to everyone.
Many times over the years I wrote here about my girlfriend Julia. Our relationship began 36 years ago and we’re in our seventies now so it seems ridiculous to call her my “girlfriend”, but we never got married and “partner” sounds even more ridiculous to me. Three years ago she decided she didn’t love me anymore and asked me to leave our house in New Mexico, so I moved back to New York. As soon as I was packed she remembered that she did still love me but I left anyway. For the next three years we lived apart but talked on the phone every day.
Three months ago she suddenly developed dementia. In retrospect I see that some symptoms had been developing slowly and continuously over seven years or more but those symptoms were so mild that before last August nobody who knows her thought she had dementia and after that date it became obvious to everyone.
Since then she has spent 17 days in two New Mexico hospitals. The doctors haven’t produced a diagnosis or treatment plan. The hospitals here are very bad. I’m thinking of taking her to a third hospital.
I went back to New Mexico as soon as I could and have been living with her again, taking care of her, ever since. I told her I will take care of her for as long as we both live. I offered for the umpteenth time to get married and this time, for the first time, she said yes. There’s a part of my mind that tells me, “It’s a big mistake to saddle yourself with this obligation for the rest of your life. This woman rejected you not once but twice (she decided once before that she didn’t love me anymore and that time she really broke up with me for years). She wouldn’t do this for you. Are you crazy?” But I love her so I’m doing it.
So here I am in a tiny house in New Mexico taking care of a dementia patient. The first few weeks we loved each other so intensely, love was so manifest, that we both agreed it was the best time we have ever spent together. Those weeks were probably the best weeks of my entire life. I kept telling her, “No matter what happens to your mind, maybe you can hold onto this love.” She agreed. Really I wanted to say, “Consciousness will always be here,” but she was never interested in consciousness except when there was transmission between us, and that phenomenon happened only once since I came back to take care of her.
But as the weeks went on she became sadder and angrier and more confused, and although she seems to still love one of the cats she has become increasingly cold to everyone else including me. And she still loves her mother who she believes is living in an afterlife sort of way in the bedroom. She doesn’t understand what’s happening to her and her mind insists on blaming somebody for it, so she directs blame outward in a general way including at me.
Much of this is incredibly sad. For example, it’s no longer safe for her to drive or leave the house alone. Last month she wandered away and was found kneeling in the center of a busy intersection kissing the pavement. Afterward she explained to me that she did this because she loves Santa Fe, the city where we live. Love is a good thing but now there’s an alarm on the front door so I know when she tries to go out and she wears AirTags on her belt loops. She hates these things but so far, in her lucid moments, she recognizes the need for them and accepts them voluntarily.
Here’s the thing that breaks my heart most intensely. It gives me a physical pain in my chest. Last month I had to move her IDs and credit cards from her wallet to mine because she kept throwing them out (she throws out all sorts of valuable things and I have to sort through the garbage every night to retrieve them). She hates that I did this but so far she recognizes in her periodic lucid moments the need for it and accepts it. Periodically (her state fluctuates widely hour to hour) she becomes very angry and upset that she has lost her “agency”, and the first specific complaint is usually, “I don’t have a credit card anymore.” (I opened a new credit card account for her that I can limit if necessary without affecting anything else, but the card hasn’t arrived yet. She can’t drive safely anymore.)
That’s all prolog to the thing that makes me saddest. A few days ago I discovered that she has filled her wallet, which I retrieved from the garbage last month, with expired IDs and expired credit cards. She’s like a child pretending to be a grown up with fake grown up contents in her wallet. That she is reduced to this, to a child pretending to be an adult, gives me a physical pain in my chest.
Hey Freddie
There’s so much life in what you write.
I appreciated this personal self-disclosure of yours
Thanks Riccardo. It’s amazing what comes out when we stop worrying about what we write. 🙂
I thought of asking you for advice about this several times over the last couple of months but didn’t want to impose on you.
No worries.
Anyway I can help
Riccardo
Dear friend,
Thank you for sharing such a poignant update. Congratulations on the acceptance of your proposal – though you did not say if the marriage took place.
I am pleased you are together again … and believe she has become an even more important teacher for you now.
What you have been going through sounds very like what the author’s Iris Murdoch’s husband, John Bayley, went through as her dementia progressed. He tells the story, which is also their love story in the book Iris, which was made into a film. If you have not read it, I do recommend it, as he managed to continue the love – despite the constant increasing demands – until the point was reached quite late that she was put into a care home.
He followed with 2 sequels about adjusting to life afterwards with all the memories, which I also appreciated reading.
What you said about her reminded me that, when we believe we are personalities/egos, we are amnesiacs to Reality and are ALL playing at being who we think we are.
Thanks Brian.
We got a marriage license but haven’t gotten married yet.
I’m very glad you reminded me of John Bayley. His book “Tolstoy and the Novel” made a huge impression on me when I was in my twenties. I fell in love with Tolstoy at that time. In a way he was my first guru. If I remember correctly, Bayley wrote something like, “Anna Karenina is one of the few great novels that has a moral. The moral is, getting what we want doesn’t make us happy.” (Which is consistent with, or even a meta-summary of, Buddha’s four noble truths although I don’t remember if I knew that at the time.)
At that time I was in graduate school hoping to find great profound truths in famous old books. For the most part, like Tolstoy, I was looking for profound truths in the wrong places. But I thought and still think that Bayley’s remark is genuinely profound — it’s one of the facts or clues that can lead to Self-realization –and I thought it correctly characterizes Tolstoy’s novel. The fact that Freud said the opposite made both remarks seem especially profound, and for many years I wondered which point of view was more true. (Hegel was another intellectual icon of my grad school years, so opposite truths that are both true in a way were attractive to me.)
I think I skimmed Bayley’s first book about his wife’s dementia quickly when it came out but the topic didn’t interest me at the time. Now that you’ve reminded me, I will look at it again. Thank you.
Hi again and thanks for your comments.
I was pleased to hear such positive reports on John Bayley’s other writings, which I have not read. His Iris trilogy really touched me.
Although this is doubtless something in hand already, should Julia be able to comply, it would probably help the ongoing situation if you complete the marriage or formalize the relationship in some other legal way. That may prevent future admin issues. Along with that, putting bank accounts in joint names and updating wills is always a good idea.
I recall you had a keen interest in covid when it hit us. I have heard very conflicting reports about how the vaccines have affected different people . . . and none really satisfactorily substantiated. However, have you any sense that Julia’s condition may have links to vaccines?
With your own long time sleep condition, could a part-time carer help out for times when Julia’s awake and you need to sleep?
You are both in my thoughts and prayers.
Hi Brian,
We learned the hard way that you are right about the legalities. For the first two weeks after her illness suddenly began, during her first hospitalization, I was locked out from helping her because she hadn’t signed the necessary documents ahead of time. That’s all fixed now. My advice to other US couples (US because it depends on laws) is make sure you have signed medical proxies (they go by different names in different states), medical advance directives, general (statutory or financial) powers of attorney, and wills.
I don’t have any sense that Julia’s condition is linked to vaccines, but I don’t think it’s possible to know whether vaccines are linked to illnesses without doing formal scientific studies which usually require large numbers of people studied and a graduate level knowledge of statistics. I haven’t been keeping up on reading such studies but I haven’t heard of any that suggest a link between vaccines and Julia’s symptoms.
About part time help: Julia’s sleep schedule now is even more irregular than mine. I don’t think we can predict in advance when we’d benefit from help. Also I don’t think she would accept the kind of help she needs from a stranger (it mainly involves convincing her to do things or avoid doing things without making her feel like she’s being deprived of control over her life).
Dementia has become somewhat of an epidemic in the Netherlands, where I am from. Many patients opt for euthanasia, which is legal there. All in all a depressing situation. I wish you all the best. And much strength.
Hey Freddie, I read an article you wrote on anesthesia years ago. I have a response to this that is very very unique and not a simple assertion that awareness remains (but never the less shows that awareness/experience must be there through a totally unique and new logical argument not an assumption) I think you’d find it extremely interesting. I don’t think it’s something that could fit neatly in a comment here. Is there any other way to contact you like email? Thanks!
My email address is on the bottom of this page (assuming you’re reading this on my blog).
A very poignant story, Freddie. Thank you for your openness. You obviously bear a heavy burden – I wish you much strength.
Hello, I have had your blog in an RSS feed for many years now. I’m sorry to hear you’re going through this but I commend you for being there for her. I am currently taking care of my mom who has dementia so I know how difficult it can be, and that’s with the paradoxical good fortune that she is bedbound and serene in disposition. I have learned a lot and bettered myself by adapting to this, and I wish you the same. In particular it taught me a lot about the nature of consciousness. Be careful to recognize your limits, however; sleep deprivation is common and can go some bad places. Wishing you both all the best!
Hi Nattie,
Could you say more about what this has taught you about the nature of consciousness? I’m curious.
Coincidentally, right before I saw your message I was thinking that sleep deprivation may turn out to be the problem that puts an end to my ability to take care of Julia at home. I’m always sleep deprived anyway due to a condition called upper airway resistance syndrome, so I need all the sleep I can get. The only reason we’re still coping with this is that Julia has been sleeping roughly 15 hours a day since this started and I sleep only 5 or 6, so I can usually get my full dose of sleep while she’s asleep.
Thanks for writing.
Hi Freddie,
I’ve been working in a nursing home for close to 2 yrs now. The majority of the residents have some form of dementia. Being interested in consciousness, human behavior, and spirituality I’ve had the opportunity to observe a lot.
What is interesting to me is that the relative nature/functioning of mind is diminishing for those with dementia but the mind’s absolute nature (basic awareness) remains in tact. Regardless of the stage of dementia the people are in there is a possibility to communicate from that basic space. (Maybe similar to that transmission of consciousness you talked about) I rely a lot on that type of communication at work.
I feel a push to pass on some of my experiences which might be of use to you. I learned to not impose or project my reality onto them (except in cases where their safety is concerned) . For eg. There is a resident who periodically asks when dinner is coming shortly after dinner was served. Instead of trying to explain to her that she just ate dinner, which ends in an argument, I just say ” it’s soon coming”. She doesn’t remember 5 mins later anyway. Or if I feel she is still hungry and isn’t just asking out of habit I’ll bring her a snack to tide her over “until dinner arrives”. At first it felt funny and kind of patronizing to lie but being perfectly honest is often futile. Like explaining to a resident that the person they’re asking about isn’t going to visit today because they’ve been dead for 20 yrs is just cruel. So I just go with the flow and do what works and keeps them happy. I focus on their reality and the undercurrent of feeling rather than reason and objective truth. That approach of trying to see things through their eyes has helped a lot; it naturally engenders understanding, kindness and peace. We laugh a lot at work (residents included)
I’ve seen that adult-child phenomenon you mentioned. It’s particular, isn’t it? I’ve seen survival instincts kicking in that don’t really reflect objective reality any longer.
A couple of interesting people you might appreciate is Oliver Sachs and Teepa Snow. Lots of videos of theirs on YouTube.
Hi Scott,
To me too that was the most interesting thing you said. Would love to hear more about this possibility of communication.
I had just gotten to the point last week where I realized I need to stop trying to convince her of things. Stop arguing. Like you say, she forgets whatever we say anyway. What stays with her is that I’m arguing and telling her she’s wrong. It was good to hear you amplify what I’ve just begun to stumble on from your perspective with your much greater experience. Thank you.
I’ve always had mixed feelings about Oliver Sacks. He writes beautifully and as I recall is empathic to patients but the first book of his I read, about migraine, created a lifelong contempt and distrust for him. As I recall — I probably read the book 40 or 50 years ago — he asserts that food doesn’t trigger migraines (or maybe he says less emphatically that there’s no firm evidence). This is what neurologists used to believe until a few decades ago.
The reason this created a feeling of contempt in me is that until very recently (a few months ago) I had had chronic, frequent terribly painful migraines since age 12 and I knew with absolute certainty beyond any doubt that eating onions, red cherries, chocolate, hard cheese, yogurt, and several other foods gave me migraines — if a teenager can observe this why can’t neurologists? — so Sacks’s absurd ignorance on this point (which he shared with neurologists in general) affected me emotionally. There were no effective migraine drugs yet at that time so the neurologists were encouraging patients to keep eating foods that cause agony.
(Incidentally, my migraines stopped completely last March, 50 years after they started, as an unexpected result of a change in diet and supplements which I did for other reasons. If anyone here would like to know what I did let me know. It’s off topic for this blog but I’ll write about if anyone is curious.)
P.S. Just to be clear I really mean my migraine headaches have stopped. I can eat all those trigger foods now — onions, chocolate, etc. — with impunity. They no longer give me headaches. I still have painless ocular migraine symptoms (red/green dots on the visual field) but no headaches.