Anne's Visit

Well, Anne has at last made her way to Austin again to see Mom. I say at last because I know she'd have come sooner but she's been quite ill , and it is only now that she's got the strength to travel.

I spoke to her on the phone in the morning and arrived at home in mid-afternoon to find her sitting on the couch, talking with Valery. She looks good, though still a bit frail from her now two-month ordeal. She said she lost nearly 25 pounds, which, for someone who only began with 125, represents a considerable portion of her body mass.

Nonetheless, she remains upbeat and was most delightful on seeing Lynda in her new space. Even though she didn't open her eyes for long, I saw Mom look at her lovingly. She smiled at Anne's presence, reminding me of how things used to be not so very long ago.

With such small, visible playful gestures and a dozen more unseen, at the least, I feel, Mom is aware of our love and care. She definitely appreciates seeing Anne. After all, she only asked about her every day for the last two weeks! They have a special bond, formed, not just in this illness, but as all mothers and daughters, over time and through many changes.

Sadly for Anne, though, during this visit, unlike times past, there isn't a whole lot she can actually do for Mom. Gone are the days of shopping and cleaning and arranging doctor visits and hairdresser appointments, now replaced with long minutes of listening to quiet, measured breathing. We read to her, we talk to her as much as we can and mostly we are simply there for her. It is amazing to me how simple things have become.

So, Anne's here till Wednesday and will likely come again later in the fall. She mentioned bringing Jennifer, which I think would be good for the both of them. Certainly it would be good if Jen were given the opportunity to say goodbye to her Gram. Dan, is, of course, in London, so he will not be likely to see her again, but doubtless he's been thinking of her, especially in light of his own Mom's illness.

For my part, I have reached a level of comfort with the arrangement (especially given Cheryl's tender care)and hope to maintain this sense of calm throughout the days and weeks ahead.

A Good Day

Today was a good day. Lynda has moved to An Angel's place. It was a long day, or so it seemed because so much came together in what was, in hindsight, a very short amount of time. I began the day by picking up the last of the very personal items from her apartment at The Continental.

We've condensed her possessions before, and this time it was much easier, though more difficult because we are now down to the final pieces. Some of these are absolute treasures; some of them not even sentimental value will hold them after she's gone. Much of what remains is either something that Chris wants or that we will give to Goodwill.

Looking around at the final set, it occurs to me how little of this I desire to possess. I do think we need to make an inventory at this point, before Mom passes, to make certain that there are no misunderstanding later on. It is likely that she's given away the same thing to all four of us over time, and now we have to decide who has claim to what, or, more important, who really wants what. I've certainly taken on the art, perhaps because there is no interest in it for the others, but I do not have many an interest in many things, but there are only a very few things, now that we approach the final distillation and disbursal, that I do find I want.

Immediately, though, it was nice to dispense with these thoughts by placing as many of the most precious and interesting things that she's collected in her room, most notably, her art. It all was of her choosing, really, since these are the things that she selected when moving to the Continental. The reduced space has had the effect of concentrating these things, but as Lynda, they come together in colorful harmony.
Mom was delighted to see her room and even said so! She called me by name and thanked me and was polite to Cheryl and even smiled! She is still heavily medicated, but I think that Cheryl will find a balance that will keep her pain free but not so sleepy.



The new place will allow us to establish a schedule again, which is good. Steve will be visiting her almost every day now, which is good because he'll see her tomorrow and Friday when I simply can't (I've used all my leave time at UT), but I'll see her again on Saturday. Chris will go out with Valery on Friday to find her way. Finally, if Lynda feels like it, I can tell her friends where and when to come calling. All that is just a bit down the road tho.

In the near future, however, Anne comes in on Sunday around noon, and we'll go out there together I am sure. I know Mom has been looking forward to her visit, and I think this place will give them a chance to be together in a way that is comparable to the Continental. Cheryl will reassure Anne as to the quality of her care, and I hope this will be acceptable to her.

A Final Move

Well, we've made the decision and the move is day after tomorrow, to the private care home called Angel's Place. Cheryl did indeed go by to meet with Lynda and said she had talked with her and felt she could care for her. More than that, she said she would take care of Mom and this with the earnest smile of one who means well and who will do what she says. Of course it won't be easy, but this is the role she's taken and I'm grateful to have her and the home she's providing for Lynda.

Steve and I went to install most of her furniture; a table, bookcase, lamp and dresser. Hospice will arrange for delivery of a hospital bed tomorrow and Wedndesday afternoon, after I get off work, we'll move her.

The place is quiet, sunny and clean. It smelled good when we came in and her room is, of course, clean and well lit. We'll finish arranging thins once she's there and I'll go hang some paintings and put up books and things around to make it more 'hers'

I don't know how much she'll notice, however, as on our visit today she was again curled up in bed and unwilling or unable to turn over to look at us, She did open her eyes to look at me when I sat down on the bed and leaned in close. I stroke her hair as she closed her eyes and mumbled something softly. I told her what we have planned and she nodded and gave the slightest shrug. 'What am I gonna do, say no?'
is what comes to mind, and I can't say as I blame her. Yes, she doesn't have many choices left, but I hope this last move will at least bring her some peace and quiet.

It may be weeks now, but I don't see it lasting more than a month. IN any case, I think she's waiting to see Anne, who'll be here this coming Sunday, to let go. At least, I hope she won't linger much longer after they have a chance to talk again, if only because I want her to find peace sooner rather than later.

Another Move...

Well, once again, it pays to have an open mind and listen when someone comes calling. I know there have already been a lot of stops on this slow route to oblivion, but its seems that there will be just one more.

Yesterday I got a call back from someone I'd called earlier when looking for a place to move Lynda from the hospital. Cheryl McCulley is a social worker who has opened a private assisted living home in southwest austin called An Angel's Place. It is a nice home, large and small at the same time. It is a large home, with six bedrooms and two baths, new and clean and full of light because it is out in the country. It is an inimate environment, though, because there are only about five bedrooms for residents (Cheryl lives in one) and she currently has only one resident. It is certainly quite different from Marbridge, which, because it is an officially licensed nursing home, has requirements that make it, like so many others, an insitution designed for the lowest common denominator instead of for the individual needs of the residents.

And Marbridge is the best place I've seen so far, so this isn't meant as an attack on that fine organization. Indeed, the people there have been so accomodating and understanding that I actually regret the thought of their hard work having been in vain; yet I also know that I have to do what's right for Lynda, and my concerns for the insitution, any insitituion, are secondary at best.

And even though we haven't made it official, I feel that if I can pull this off, it will finally be for the best; I will have actually done something--anything--to improve the quality of Lynda's last days.

Today, when I wen to see her, she was sleeping, of course, turned on her side in a semi-fetal position. She acknowledged my presence with a 'Hello darling' but didn't have the energy to turn to me or even open her eyes. I told her about my plan and she shrugged with a half-smile of resignation and allowed that she would visit with Cheryl when she comes by to asses her later today.

This is not a done deal as yet, because Cheryl must go an evaluate Lynda's conditon to make sure she is capable of caring for her. It may well be that she is too far gone for this final move, but I don't feel that way right now. Honestly, there isn't a lot of care required because we have now decided that there isn't any 'therapy' that isn't directed at quality of life and that she be allowed to rest comfortably till the end. Yesterday she told be that she wished they'd 'just leave her alone' to get some rest, and this is exactly what I hope will happen if we can move her to the Angel's Place.

I feel a bit funny writing those words, especially because I sensed that Cheryl is very religious individual, but at the same time, it was comforting to see that she didn't specifically refer to God or any religion, keeping it in the more neutral synchronistic 'everything-happens-for-a-reason' frame of mind that I prefer. In short, we were in agreement about pretty much everything, including, for my part, the payment. In fact, even though it is a completely private-pay arrangment, it is also more affordable than the full-time professional nursing care that is required for Medicare/Medicaid.

Boring or Hectic?

Ironically, as I contemplate Lynda sleeping away her last days, bored because she is no longer interested in the world, no longer interested because the world is no longer interested in her, my life has become all the more hectic. Today it seemed as though I had only the few minutes I spent in the bathroom completely to myself, and actually, I didn't get all that much done. It seems that the things I actually do are only in preparation for the other things I actually do and then I do it all over again, without ever know if I've actually done anything or just gotten ready to do it later, perhaps tomorrow.

Yesterday was a tough day, but not necessarily because of Lynda. In fact she was better than I expected, especially after I had a meeting with a volunteer from Support Source, a service that provides volunteers for the bedridden and dying folks who have not yet been blessed with the label: Actively Dying. Intended at first as a service to aids victims, it has expanding to serve anyone who is not on hospice care but who clearly does not have a long time to live. The woman I met, Roni, was extraordinarily nice and sensitive, not just to Mom's needs, but curiously, to my as well. I say curiously because it was a surprise to me when she suggested thaat I might need someone to talk to, but as soon as she said it I realized she was right. I think that time will come, but I told her I wasn't ready yet; I'm still too busy taking care of Mom.

Roni said she understood, and listened patiently as I described Lynda on one of her worse days, warning that she might be 'grumpy' or worse; she can sometimes be rude. Of course, I've seen said behavior, and truth be told, most of the people who get the toungue deserve it. She doesn't need to suffer fools, gladly or at all, and now will not even for the most innocent seeming query when it is not earnestly meant. Treat her as an object and she'll do the same to you.

Well, of course, after these dire warnings, we went in together so I could introduce Roni and lo and behold she was sitting up, awake, with a pink color and focused look. She was not doing anything, but to find her conscious was a pleasant surprise. Even better, she greeted me by name and was actually polite to Roni as she intorduced herself. She even opened her eyes for some of the conversation, although she looked at me instead of Roni. Nonethelss, it was not the angry or weeping or suffering Lynda that we met, but a dimly lit chimera that allowed our guest to see Mom as what she must have been. Roni paid particular attention when I told her that Lynda was an auto-didact and that she had read voluminously and widely for many many years. She heard me when I told her that Lynda was an artist; we never discussed her 'profession' as such because it was understood. In the room, Roni asked Lynda is she would like to draw and she said yes, that her pens were in a case on her desk. They are indeed, and I promised to go get them, which I will, though I have doubts about whether or not she'll use them. It can't hurt, that is for sure.

So far, Steve and I have visited her every day, sometimes twice a day, and Valery has made several trips as has her loyal friend Chris, who has cared for her more tenderly and lovingly than anyone other than Stephen and Anne. She went yesterday to her house to gather some more clothes, then went and sat by her for several hours, talking and helping her eat.

Chris has helped me more than she's helped Lynda, I do believe, and that's saying a lot, because she's helped Mom a LOT; she's been a real godsend in the most literal sense of that word. This family has pulled together to care for Lynda, but it's safe to say we relied quite a bit on Chris, and without her help, it would have been a far more difficult and less humane process.

That's the important part: Chis has helped Lynda maintain her dignity, which is important for this old southern lady, and I'm immesuarably grateful for her. I only hope there is someone to care for me of her caliber when the time comes.

But damn, the time comes too slowly, even when it's coming too fast, or at least so inevitably and inexorably at any pace. It can go too fast and too slow all at the same time and in the same place. This too must be explained in a unified field theory, but that is of little comfort when lost in the dim room where Lynda sleeps next to me. I long to go back or forward either one; staying here is just to damn boring. I'd have said painful, but that seems so melodramatic when I know it's just because there is nothing to say or do and it makes you crazy after only a minute, mostly because you know it's only been a minute and there are so many more to go. And yet, so few...round the circle and out the door, I head home with a dry throat and dry eyes, wondering if Roni is right, if I'll let it out sometime soon.

First Memories of Lynda

My first memory of my mother was also the birth of my lifelong desire to please her. I remember it as a single incident, but more likely it was a series of events which I have distilled for the purpose of recalling it with the importance it deserves.

It is important, of course, because it is my first memory; try though I have to recover something earlier, it is in fact my first real memory, and I don't mean that it is just the earliest visual recollection of my mother, Lynda.

I mean that in all these years, as much as I have searched my consciousness, the memory of helping my mother hang the laundry out to dry in our back yard in Abilene Texas, in 1960 is my very first entry in this life journal I have lived now fifty-one years. It is significant not only that it is of my mother, but the very memory is associated with feelings and desires that persist to this day. Some of those feelings are unpleasant, and some of those desires have left me unfulfilled, but the feeling of sincere love, unfettered by a past or any knowledge of hers bore up the desire to free her from the pain she expressed about life. At first, it was physical things, feeling sad that she didn't have them and wishing I could get them for her, but the desire evolved as I learned more abouther and realized that wasn't just things that this woman didin't have, but it was also a stte of mind that she was inacable of acheiving.

Simply put, I soon came to realize that my mother was unhappy, and not just that, she was not ever going to be happy. I realized this at the age of four, and yet have not yet failed in my quixotic attempts to miitigate, if not outright eliminate at least some of the unhappiness that my mother was constantly expressing. I say I have not yet failed because the quest, though now very near to it's end, is not actually over. Lynda is as of thiswriting, still alive, tho I expect futher entries in this memoir to come after the inevitable loss of her life, her love, companionship and trust that will also mark the failure of my quest.

But are not the real quests of life destined to end thus is failure? It is not being hopeless to realize that some searches will never result in treasure and that some desires, no matter how heartfelt, are destined to remain unsatisfied. If at the age of four, when hope is not imagined, but felt, lived as though it is all we have because it is, I could hope for my mother and yet knowthat it was hopeless, what matters is not the thought,but the deed, what I did in response to both the hope and the knowledge of the certainty of failure is telling of the human force, what makes us different in yet another way.

There it is, I knew then that my mother was unhappy but I also knew that there was nothing I could ever do to change that. I remember thinking, 'She likes being unhappy!' 'Complaining makes her feel better!' 'If she didn't have anything to complain about, then she would really be unhappy!' That is an odd thought sequence for a four year old, but that is what makes this a memory. Not only do I remember the physical circumstances of that moment (or more likely, moments), but I recall, with a clarity that is not diminished with age, these thoughts, and how they fit together as an answer to a question I had, probably since birth: What's wrong with Mom? Why is she so sad?

These thoughts, and the conclusion I reached, then represent my first awareness of my ability to reason and find an internal answer to troubling aspects of my life. It's as if this was the day that I 'woke up', that something happened in my brain that was not just useful or exciting but extraordinarily pleasurable. 'Hmmm...I can think!' is sort of the way I would describe that thought, followed by another one: 'This could be useful' and then 'Maybe even powerful...' It is indeed.

David's Visit

David came in from D.C. yesterday to see Lynda and spend some time with us. I must say the former was an served as an obligation but the latter was delightful, at least for me, because he always cheers me up.

His sense of humor has always tickled me and I feel a release of tension when he's present because he has the same inner calm that our father Bill had; it can be perceived as a lightheartedness, but it is more significant than that, for there have been only a few people in my life who generate the calming energy that makes those around them feel comfortable in an effortless way and my brother is one of those people.

Ironically, I relish his aura as my own is so different, so red to his blue, so frantic when held next to his stability. Steve and I share the freneticism and can thus feed my self-doubts, but David has the collected wit to counter my gloomy inclinations. David's calm is almost dispassionate, however, and here is where we diverge as individuals, because my own energy, however negative and self destructive, is also born of an irrepressible passion. Would that I could look upon Lynda as he did today with a final smile and nod, but I cannot leave the show, no matter how horrible it becomes, because I have to know how it will end.

No, indeed, I always want more, I want to be there, witness to the end itself. Then I can say goodbye. I am not reluctant to release my mother, of course, but I am simply poor at making major transitions. Turning the page has always been difficult for me, especially because I habitually read from the end of the book, but this chapter will not close for me, apparently, till I am obliged to observe and chronicle her last breath.

To be literal, the breathing is now more labored, and she sleeps most of the day. When we came in today she was on her side, tucked up but not curled up with her eyes closed. I said hello and she even said my name in reply, but did not turn or even open her eyes. Even when David came in, she was not easily encouraged to look at him, though she did acknowledge him by name. It was as we said goodbye, however, that I noticed her looking at us both, with an intensity I haven't seen much of in recent weeks and months.

She knew David was leaving for good; I could see it in her eyes. I could see the fear that I cannot quell, and saw the plea for me to return. Doubtless it is an imagined plea, but even if it is only to satisfy that self-imagining, I will return. Tomorrow is Monday, so I will go see her after work, in the afternoon.

Choices

Well, it was a long weekend and I am not convinced I've made the right decisions, but at least Steve is back to help. He went to see her yesterday and began working on the paperwork. There are some serious questions that have little to do with her health, but everything to do with how and where she will live until the end.

I don't think she can return home now, as weak and disabled as she's become, but as of today, Lynda has not accepted this fact. She still thinks that she'll get stronger and can return to her apartment, and remains in denial after I've told her there is no way that we can take adequate care of her at the apartment. In fact, we've given notice at the Continental, and of course, the more reasonable option would have been assisted living, but I think she's past that. Certainly she couldn't be admitted to the Park because she was too feeble.

One thing I haven't done enough of is looking for places that can accommodate her that are not necessarily in or near South Austin. Steve is talking with the various players in the process (Marbridge and Hospice) to find out how we can best make use of Lynda's Medicare/Medicaid benefits to maximize her comfort level here in the final days/weeks/months. Of course, Marbridge isn't the facility I'd expected to land her in, but then my expectations are different from Lynda's, and both are wildly divergent from the reality as it finally presents itself to us.

The fact is, unless one is wealthy enough to afford full-time in-home care for one's last days, we must expect to end up among the ranks of the merely disabled, if we are lucky and the cognitively impaired if we are not. Neither is an attractive end, but one may either avoid the fate altogether by committing suicide at an appropriate time, or resolving to make the best of the final suffering and at least comfort those you are leaving behind by letting them know you chose this end and will take responsibility for it.

Otherwise, we end up where we are now, when the family feels guilty for the suffering but was powerless to avoid it and is equally powerless to end it. I think we must all take this responsibility or face abandonment as caregivers lose the desire to help one who will not help themselves.

Awake Again

From Lynda's Retrospective...

Well, today I got a call from Lynda. She began by calling me Steve, then told me that she had somehow arrived in a strange place. When I told her that I was Phillip and that I had arranged for this, she said, "Well, this isn't the place for me, Steve".

I know that she won't be happy with any arrangement, including her home, but I do feel that living in her apartment is no longer a viable option. In fact, the only option we have left, after have successfully delayed admission to an assisted living facility. Of course, there are many things we could have done differently, but always we tried to accommodate Mom's desires, so in the end, we are where we are because that's where Lynda asked us to take her. I really did try, several times, to get her admitted to the Park, but each time was met with the desire to be independent and her concerns that the assisted living would be too confining. Well, what we have now is even more confining, but at least it's not so cramped and noisy as the Southwood, which is where she spent two week prior to going home the last time.

So Steve is over there today, arranging for the paperwork and will check her out and let me know how it is going. I don't expect more than I've already heard; that is, that she is not happy and in pain. Honestly, at this point, I don't think she'll have it any other way, as the pain meds make her somnolent and she has never been happy.

From my perspective, Marbridge Villa is a very nice place for what it is. After all, this is a place where people come because they have to, not because they want to, and in most of these places, the caregivers take advantage of that fact, yielding little or any real 'care' and substituting in it's place perfunctory and often rude treatment. Marbridge appears to be different, in that eveyone I've met so far has been very nice and genuine about their concern for Lynda. They seem to recall that we all have parents, and that the treatment we give to others should be no different that that we give to our own.

I hope this day is the day when Lynda realizes how much we care for her and how much we've done to make this part of her life more comfortable. Loving her is no more difficult now that ever before, but caring for her has become more of a challenge than I anticipated.

Marbridge Thoughts

From Lynda's Retrospective...

Well, Lynda has now been moved to Marbridge Villa, which is a skilled nursing home in Manachaca (in far south Austin, but quite near to our house). It is in a rural setting, with a view of horses in a pasture out the window, if Lynda were inclined to look out, which she has not for at least the first two days. Those days were Saturday and Sunday, and she was so heavily sedated that she was unable to do more than acknowledge my presence briefly on arrival.

I visited her twice yesterday; in the morning to see where and how she was, then in the evening to deliver the clothes and pictures and other personal effects I brought for her from home. Both times she was only just conscious and then only for a brief moment. I think she knew that I was there, but I don't think she she who I was. I watched with sad fascination as she slept, wondering how we got here and how it will end. I want it to end and yet, how can I? Most difficult, and it's probably easier for me than her, because her mental state is so tortured by these latest physical and psychic twists and turns. I'm still young enough to take it; she's just had enough.

So, the nurse phoned me first thing today to let me know that they hope to wake her up and get her out of the bed today. I left clothes and a comb and her barets out on the side table, so perhaps if they dress and groom her she'll feel a little more human. I can't say I know why I think this might be a good thing, since it would be nice if she simply slept peacefully (from the exterior) until the end, but then I do miss her already and wish I could tell her again how much I love her. And, come to think of it, I haven't actually said goodbye. I guess this will come at a time when it's too late for her to actually hear me, because the utterance is too final for me to deliver just yet.

I have to finish what work I can today, then I'll head over to see what I can do for her. I suspect it won't be much. If she's awake, I would like to read to her. I've been reading aloud from the Atlantic while she sleeps and I think she enjoys just hearing the sound of my voice. I've not read aloud since my children were little and I'd forgotten how visceral the pleasure is. I even learn something from reading the Atlantic as opposed to the thirtieth re-reading of "Wet Cats"!

Hospice Thoughts

From Lynda's Retrospective...

Well, today was certainly one of the toughest days I've had in this whole process, but at last we seem to be coming to some sort of conclusion. There are so many details that I could relate but it all seems so irrelevant at the moment, I'll confine myself to observing that in spite of my efforts to do what's right for Lynda, I can't seem to deliver on my promise to make the end of her life more comfortable.

To be clear, I am not mired in grief, hence these feelings are not retributive but they are borne on the wave of guilt than has somehow been generated in the course of our lifelong resonance, Lynda and me, so that now I feel the guilt she felt for abandoning her mother, even though that is only the hyperbole that she sold me through my youth to shield me from the inevitability that is life and, of course, death.

I was in this manner protected from this inevitability (the truth) when I came to this final stage, thinking I would be able to do whatever it took to make her comfortable and remember that through it all she was still being loved and cared for.

It is no wonder, then, that I stumbled right out of the gate and failed to protect her from the saviors, those who could not nor would not face that inevitability and therefore sought to sell their chimeras as hope and light, as a salvation from pain and death. Sell those falsehoods to her they did, and in concert with alchemists and necromancers they succeeded in raising her from the dead (with her complicity, of course), selling them, in effect, what remained of her life for a handful of beans.

Now of course the beans have failed to work their magic, and though the healers did as they thought was right and sacrificed first the white chicken and then the black one, they way they'd been taught to restore the non-living, it did not actually work on Lynda. Ironically, the saviors are interested only in saving their own immortal souls, and of course, the alchemist and necromancers are only pretending to heal in order to protect the illusion that is their livelihood; they have all, in fact, already stolen her away, and the eyes into which I peer for life and the ears into which I pour my affirmations of lifelong love are closed and shuttered already; battened down for the heavy storm that approaches.

She is still not ready for the maelstrom, now, I think but perhaps only because I've already truly failed her, and all that is left, as she said to me today, is for me to "walk out and never return". I won't do that, of course, but it won't change her feelings of abandonment because, at the end of the day, so to speak, that's just what I am doing. I could say that it's what I'm forced to do, but I know and others will too, that in fact I am giving up, perhaps just to save myself, and the selfishness embodied in that resignation is appalling to me. Of course I have to give up, but didn't I say I won't? That is the difficult part to face: I haven't the will to face this fully. She knows that. That's what she meant. I will walk away.

By this I mean that I have not been able to devote the necessary hours and days to her care and well being. I've been able to see her once or twice a day, but to really follow through on my promise to Lynda, I should really have taken her into our home as soon as Pierre moved out. We could have gotten a hospital bed and I could have arranged for a day care nurse and assumed the night time responsibilities myself. That's what I could have done, should have done, and no doubt, this is what Lynda thinks I should have done and failing to have done this is the same as failing to fulfill my promise.

After all, she did buy the house for us, so in a way, it was her due. And yet, when it came down to it, the room is used for storage, and I never faced even the possibility of discussing it with Valery because I didn't want to put her in the position of having to say yes and resenting me and Lynda for the morbid imposition. I didn't even want Valery to have to think that the decision was hers because that would have inflicted the very same guilt I am now resolving.

The fact is, I love both Lynda and Valery. But Valery is my partner and to her I owe far more than the compound debt I acquired from my Mother. It is, alas, but another of my compromises with the fabric of life surrounds and envelopes me; I yield, as to the howling wind that erases my words ere they are spoken. Nobody's listening, eh? Might as well be mute.