I have not posted for a long time about Mom. Ever since Mom moved to Aegis last April (or is it more honest to say Dan and I moved Mom to Aegis without consulting her and without her consent — such being virtually impossible to do given Mom’s situation?), I have stopped blogging about Mom. It has been just too depressing for me to keep talking about the same lack of progress, and indeed the continuing decline on Mom’s part. Even though we have been hoping that Mom would eventually adjust and adapt to living at Aegis given sufficient, that still does not appear to be the case a year later. Indeed, every time I take Mom back to Aegis after taking her out for a drive, for lunch or a cup of tea, Mom is surprised if not shocked that she was living at Aegis. She would then anxiously ask me if she was living there all by herself, and said this was something she just could not do. I would try to comfort Mom by telling her that she had many friends there at Aegis (this was partially true in that all the staff at Aegis know Mom of course, as well as 4-5 of the more cognitively-alert residents in Life Neighborhood — Aegis’s Memory Care Section), but Mom, since she could not remember any of it, would remain totally unconvinced. She gave the distinct impression that she thought I was lying to her. So dropping Mom off at Aegis is always very hard on me as I am made to feel as if I am abandoning Mom. In order for me to leave Mom’s presence, I would tell Mom that I need to go back to work — something which Mom understands and readily accepts. I would also tell Mom that I would be back in a few hours to see her (I have found this to be an effective way to make Mom feel less anxious about my leaving). Whenever Mom hears that I would be back later, she would immediately demand to know when. I would reply, “In a few hours.” Mom would then stress to me that she would be waiting for my return. So one can see how hard it is for me to drop Mom off at Aegis.
One alternative, of course, is not to take Mom out of Aegis at all, but just try to find things to do with Mom onsite. This is essentially what Dan and Carol normally do. I do not know how long their visits generally last, but I know they and Mom spend all their time at Aegis. Perhaps this is one way to make Mom feel less anxious. But I also believe it is highly beneficial for Mom to get out of Aegis on a regular basis so that she is not, as it were, ‘trapped’ there all the time. I feel very bad indeed — everything I think about it — that Mom is at Aegis all by herself at Aegis, a place that remains completely foreign to her.
Even though Aegis does provide a level of support that we cannot easily duplicate at home, the place has its definite downsides as well. At the end of the day, Aegis remains an institution, one whose survival depends on making a profit. So while Aegis arguably ranks among the very best in terms of assisted living facilities (especially for Chinese people), its institutional core is unmistakable and unshakable. Even for those residents not living in Life Neighborhood (i.e. people who do not have dementia), I do not see them particularly cheerful either. Residents of Life Neighborhood have, unfortunately, the added burden of being surrounded by other largely non-responsive residents day in and day out. So when one is in that sort of environment, where most of the people one sees (save the handful of staff) are non-communicative and generally lethargic, even perfectly healthy people can get very depressed or worse, never mind those who are already suffering from dementia. I do not doubt for one moment, therefore, that Mom is unaware of her surroundings even though she has no memory of it. It is very much my fear that the general languor of the place (i.e. Aegis Life Neighborhood), which almost borders on lifelessness, is adversely affecting Mom.
I think I know Mom’s personality well enough to say that if she were still cognitively sound, and if she were given the choice of continuing to edge out a zombie-like existence at a place like Life Neighborhood, or simply doing away with herself with a pill, Mom would definitely go for the pill. I know that is the I would choose, and my personality has many overlaps with Mom’s. Dan feels differently. Dan believes Mom might opt to continue living with memory loss, even at a place like Aegis.
I know I am making Aegis sound absolutely terrible, and it is not by any objective standards. It is very pleasant, clean, efficient with lots of kind and considerate employees. But all these things cannot disguise the obvious and sad fact that this is where the aged are ‘warehoused’. It is, to be sure, a very nicely appointed and indeed comfortable ’warehouse’, but a warehouse nonetheless. There is no mistaking that all the residents at Aegis, even those without memory issues, are there just biding their time, waiting for their clocks to run out. I sense if not see this in the faces and demeanor of most of the residents I run into when I go to visit Mom. The thought and knowledge of this never fails to weigh me down. So there is some element of my projecting my own ambivalent if not negative feelings about Aegis onto Mom. But I still think I am a pretty good judge of what it takes to make Mom happy or unhappy, and that an environment like Aegis just does not cut it.
But what is the alternative to Aegis? This is certainly a question that Dan and I had explored extensively prior to finally deciding on Aegis for Mom. The process was not easy as neither of us really wanted to move Mom away from a house that she had lived in for 20 years. I have written at least one long blog about how we came to our decision (whose urgency was due in part of Ah Ng about to go on a one month leave in China). So I don’t want to go over the same grounds here. But, at this first anniversary of Mom’s stay at Aegis, I think it is necessary to revisit our thinking, and especially now with the hindsight of our experience of this past year, to make sure this is still the best option for Mom. To that end, I emailed Dan earlier and asked him to give me a call when he could. He did just return my call, and we had a long chat about this.
Dan remains convinced that while Aegis is far from ideal, it is still better than anything we might be able to do ourselves. I reminded Dan one of my earlier ideas, namely for me to find a house in Fremont close to Dan, and then move there with Mom. We would of course then have to hire a couple of helpers to assist, but I would be there onsite, as it were, to supervise the helpers. Of course, I recognized then as I do now getting the right helpers to take care of someone with dementia is not easy. We were very lucky to have Ah Ng all these years who was quite loyal to Mom in addition to being fiercely honest. Ah Ng also continued to respect Mom and to defer to her on many household decisions even after Mom’s dementia became more obvious. But Ah Ng is herself pushing 75 (?), so it is unrealistic to expect her to continue to work for Mom indefinitely. Ah Ng is one of the those rare finds in the housekeeper recruitment process. Given some of Mom’s experience with helpers prior to Ah Ng, I know that finding someone like Ah Ng again would be like winning the lottery twice, i.e. highly unlikely. And if I were to move Mom in with me, I think we will need two helpers given Mom’s current condition. While we can financially afford the proposition (which is arguably cheaper than residency at Aegis), getting two equally kind and dedicated persons as helpers (one for daytime, and one for night time) is not likely to be trivial. Even if we can find people with the right disposition and integrity, Chinese helpers are unlikely to have any training in dementia care. So the helper is basically there to take care of household chores. Mom would still be left without any companionship. Sure, I would be in the house a lot of the time, but I still need sufficient privacy in order to work on my projects. I am therefore not going to be a companion per se to Mom even though we would be under the same roof. Aegis, by contrast, does provide much more stimulation — however limited — than our own home-based arrangement.
Besides, as Dan also pointed out, moving Mom to a new house in Fremont is not likely to make Mom feel more familiar with her surroundings since in Mom’s mind, she still lives on 148 9th Av. San Francisco. In addition, caring for Mom at home offers no assurance that Mom’s memory will therefore stand a better chance of improving. In regard to that point, I am certainly reminded of Susan’s situation. Her father has been suffering from memory loss for a few years as well. Even though Susan, her mother, and Susan’s sister are all doing their best to care for the father at home, his situation, as far as his memory is concerned, continues to deteriorate. So it is not at all clear that the odds of Mom’s memory loss becoming more stabilized are increased if she lives in at home. That being said, I think there is greater likelihood of Mom being happier living at home than at a place like Aegis. Dan does not think so, but I believe that to be the case.
So after Dan and I had raked over pretty much the same pros and cons regarding home care versus assisted-living care, we arrived at basically the same conclusion as that we reached last March/April, namely that taken as a whole, Aegis is still better for Mom than living at home.
I then shared with Dan my problem and guilt in not being able to be much more patient with Mom in terms of responding to the same few questions from Mom whenever we went out. Already, I think I have gotten better since I know that Mom cannot help but to ask the same questions since she has no memory of what she has asked before. Still, I am far from where I need to be. At yesterday’s lunch, for example, Mom would ask me again and again if she could have more of a given dish even though I kept telling her to wait for a few minutes for all the other dishes I had ordered to arrive. I did not want Mom to fill herself up on a single dish, then she would have no appetite left for any of the other dishes that were coming. Mom of course understood intentions, and agreed to wait. But a minute later, she would request more helpings from the same dish again. This happened at least 10 times while we were waiting. Unfortunately, the restaurant we were at had a problem with their computer during lunch, so even though we got one dish pretty quickly, the rest of the four dishes I had ordered did not come until almost half an hour later. I found myself being annoyed with the food being so slow in coming as well as Mom’s repeated requests for more helpings of the same dish. So I was short with Mom a few times. Mom reacted by saying, “It seems that everything I say or do is wrong!”. So, for whatever reason, Mom was retaining some vague recollection that I had chided her earlier, though she could not remember why. Perhaps this is something I can tap into to help Mom’s memory.
Then after all our dishes arrived, Mom for some reason struggled a bit with her chopsticks when it came to picking up bigger pieces of food, and she resorted to using both chopsticks and her fingers. I asked Mom to stick to chopsticks as her hands might not be that clean. Mom did listen, and she did follow my advice, but within a minute, she reverted to using her fingers again. All my further reminders to her did not make any difference. I was of course totally foolish to expect otherwise. So instead, upping my foolishness, I got more upset, not so much at Mom per se, but at the whole situation. I found myself wondering if it was such a good idea after all to take Mom out to lunch. The other thing that I forgot to mention is that when I went over to pick up Mom, the Life Neighborhood staff who walked us to LN’s locked door to let us out asked Mom if she could tell her what my name was. To my surprise, Mom could not remember my name. But of course she knew me, and she was in fact calling me by the same name she had used when I was growing up, namely ‘Ah D’. I was in fact more accustomed to Mom calling me ‘Ah D’ than ‘Drew’. Perhaps it was because Mom seldom used ‘Drew’ that she forgot this, especially if she felt she was put on the spot someone by that person who asked her what my name was. In any case, this was not a big deal to me.
After we finished eating, I drove Mom to Dan’s house so that I could drop off some food from the restaurant. As I expected to be in and out quickly, I asked Mom to wait for me in the car rather than to come in with me. I think I should have brought Mom in anyway as I would normally do. Seeing Dan’s house more frequently might help Mom’s memory; it certainly could not hurt. After the stopover at Dan’s, we headed back to Aegis. I put on in my car audio the soft music station that I knew Mom liked. Mom really enjoyed the music (note to self: must find more ways to get music to Mom), and she kept saying “Such wonderful music! I almost hate to leave.”. At one point, Mom asked me if I liked the music as well. I was however still sufficiently upset about what happened earlier that I just snapped, “No!’”. Mom asked me why. I snapped again, this time with my voice raised a bit, “Because I just do not like it!”. The minute I said it, I knew I was being inexcusably rude to Mom, and I immediately regretted using that tone. But it was too late. The damage was done. Mom immediately sensed that I was upset for some reason, and she became quiet after that. By then, of course, we had arrived back at Aegis. As I was walking Mom back to Life Neighborhood, I could tell that Mom was not happy. I did not know what to do to cheer her up again. I was, to be quite honest, also eager to get out of the whole Aegis environment. When I sat Mom down in Life Neighborhood’s community room so that she could watch some TV and possibly doze off a bit, I told Mom that I had to go back to work, and that I would be back shortly. Unlike all previous times, Mom was sufficiently upset that she did not immediately press me to tell me when exactly I would be back. One of the LN staff came over as well to greet Mom. She asked Mom if she had a nice lunch. Mom barely acknowledged her question.
So I left Aegis yesterday afternoon weighed down heavily with guilt. It was clearly wrong of me to be so impatient (never mind short) with Mom. Mom certainly does not want to have memory loss, but now that she does have this affliction, I think she has every right to expect her family to continue to stand by her, especially her eldest son. I am someone whom Mom has helped and comforted again and again for many years, especially during the early stages of my career. Mom was also my major cheerleader. How could I, therefore, be so inconsiderate towards Mom? Even as I am writing this, I am aware of the guilt that I continue to feel. But feeling guilty is one thing, being able to do something concrete is quite another. This therefore brings me to my epiphany: rather than to spend all my energy thinking about how I can help Mom to improve her memory, I need to devote at least the same amount of time working on myself to build up my patience and tolerance (thereby abandoning my usual Type A personality) so that I can respond calmly and understandingly to Mom’s repeated questions and comments. I also need to make it a point to compliment Mom at every opportunity. People who are old seldom get compliments any more. People with memory loss who are old do even worse. It is as if they don’t matter any longer. Well, Mom matters a great deal to me, even though I sometimes have a very tough time showing it. That is one reason I must devote time and effort from here on to improving myself so that I can support and encourage Mom in all the ways she needs. This is an important epiphany on my part. I am surprised it has taken me all this time to finally get it. But now that I understand what I must do, I am committed to make this happen. With Dad’s strength and help from wherever he is in the Universe, I know I can do it.
I wrote this email to Carol and Dan this morning regarding the need to help the boys to acquire the ability to concentrate, stay focused, in order to learn. I hope Carol and Dan will give my note due consideration.
Carol & Dan,
The following was apparently one of Christopher Hitchens’ favorite poems, one which he was still able to recite on this death bed. Hitchens passed away in December and was quite a prolific author as well as one of the smartest thinker, debater I had ever seen on TV. His passing was a blow even though it was expected after he was diagnosed with throat cancer. Anyway, the poet here is Philip Larkin, someone I have never heard of until I read about him in one of Hitchens’ obituaries. After I read the poem, I was so moved that I immediately printed out a copy to put on my desk.
I work all day, and get half-drunk at night.
Waking at four to soundless dark, I stare.
In time the curtain-edges will grow light.
Till then I see what’s really always there:
Unresting death, a whole day nearer now,
Making all thought impossible but how
And where and when I shall myself die.
Arid interrogation: yet the dread
Of dying, and being dead,
Flashes afresh to hold and horrify.
The mind blanks at the glare. Not in remorse
- The good not done, the love not given, time
Torn off unused – nor wretchedly because
An only life can take so long to climb
Clear of its wrong beginnings, and may never;
But at the total emptiness for ever,
The sure extinction that we travel to
And shall be lost in always. Not to be here,
Not to be anywhere,
And soon; nothing more terrible, nothing more true.
This is a special way of being afraid
No trick dispels. Religion used to try,
That vast, moth-eaten musical brocade
Created to pretend we never die,
And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear – no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anasthetic from which none come round.
And so it stays just on the edge of vision,
A small, unfocused blur, a standing chill
That slows each impulse down to indecision.
Most things may never happen: this one will,
And realisation of it rages out
In furnace-fear when we are caught without
People or drink. Courage is no good:
It means not scaring others. Being brave
Lets no one off the grave.
Death is no different whined at than withstood.
Slowly light strengthens, and the room takes shape.
It stands plain as a wardrobe, what we know,
Have always known, know that we can’t escape,
Yet can’t accept. One side will have to go.
Meanwhile telephones crouch, getting ready to ring
In locked-up offices, and all the uncaring
Intricate rented world begins to rouse.
The sky is white as clay, with no sun.
Work has to be done.
Postmen like doctors go from house to house.