Sunday, January 5, 2014

An anniversary

A year ago yesterday, my mother died.  January 4, 2013.

After moving her to Albuquerque to be with my brother, she spent a few months in their house. In time, it became too difficult to care for her there, and she was moved into a care center.  One morning, after a typical breakfast of her 'being Roberta' with some complaints, she went back to her room, sat down in her chair, and died.

When my sister in law arrived that morning, Mom's body was still warm because the pacemaker kept her heart going.  True to my mother's obsessive concerns (and in spite of my continued reassurances) the pacemaker did not keep her alive.  She did not wish it to keep her alive, and it didn't, once her body was ready to die.

I was back home in Guatemala when the call came.  I picked up the phone, and my brother Bob blurted quickly, "Mom died".  It took my breath away.  I got on the phone next to my sister Marilyn, who had heard just before I did.

Marilyn had just gotten confirmation that morning of a cancer diagnosis of lymphoma.  She was considering calling Mom to let her know, when Bob called with his news. What a relief that she didn't tell Mom, since otherwise she might imagine that it was her cancer news that killed Mom.  In this past year, Marilyn has had cancer treatment and now has a clean scan.

In March the family got together for a sendoff of Mom.  We had a last big dinner, paid for by her, and the kids, grandkids and great-grandkids had a nice time.  Sometime after that, Marilyn and Bob (and spouses) took Mom's ashes down to be next to our Dad, and I assume she finally got the "Onward Christian Soldiers" hymn that she had so wanted.

In the year since, I have thought of her … not necessarily often, but at times. I have worn a necklace I made for her, and think of her. Some news, and I think of her.  Talk of elder-care, and I think of her. When I see my fine white hair, or paint my nails. Just sometimes, I think of her, with fondness now. With sadness, and with love.

Farewell, Roberta. Bye, Mom.

Tuesday, June 19, 2012

Wrapping up the story, Part Two: A new life

I am wrapping up the story of my care of my mother. This is a time of terribly mixed feelings, but thank you for sitting with me, just as things approach the end of the story.

Picking up from my last post about the trip to Albuquerque... from Part One.

We arrived at my brother's house.  I breathed deeply in relief, appreciation, apprehension.

My brother had arrived the night before with the moving truck. They unpacked her stuff and set up her room to be very cozy ... all her precious things around her, on her wall, by her bed. It was sweet and welcome. (As time progressed the last couple of days, the room become overwhelmed with other not-so-pretty stuff, like trash cans for briefs, piles of medical supplies, etc.)

The first night, she was beyond exhausted and went to bed early.  At 4AM, we all woke to hear her yelling for help... she had wet her bed quite thoroughly.  My brother, sister-in-law and myself were all rushing around, fumbling with supplies, like parents of a newborn on the first night home.  (My brother-in-law said she was just "marking her territory" - we all laughed!)  Soon they will be old pros.

We decided to get Mom a whistle to make sure she can be heard during such emergencies.  She has it on a tether around her neck, just as she used to have her call button at the home.

At one point (I think during the bedwetting incident), she referred to us as "her three lackeys".  Hmmm. Not sure I loved that.  She thinks it's quite funny, but she did that to her aides at her assisted living too, and I think she feels it's way funnier than we do.

My sister-in-law... I admit to a measure of jealousy, of turf issues, as she will now play such a key role in my mother's end-of-life journey. She will be the hero, at least that's how I felt that weekend.  Since then, we have all seen my mother's prejudice.  My sister-in-law is Hispanic, and my mother (at times) shows disrespect to her, then when my brother comes home my mother is all smiles.  So, I was wrong about the jealousy, since sadly she doesn't even get to be fully appreciated (by my mother) as the hero that she is.

I am grateful for my brother and his wife.  Especially his wife. She bears much of the brunt my mother's care, and also her worst humor. But she (my sister-in-law) tries to be positive, to be kind. Even my brother has really stepped up - and I say it that way, not because he is male but because he is... well ... my brother. I have underestimated him. He has even helped my mother with wiping after she uses the toilet.  I am impressed, and touched.

Since those early days of her care, he has called to say, "I guess it's too late to change my mind...".  I told him he could certainly find an assisted living home there, if she is too difficult.  It is his life.  It is his family.  He was tired and discouraged, after only a couple of weeks. I think it felt really good to invite her, to be that person to welcome her into his home because "it's the right thing to do", "she's family" ... but the reality is very very difficult.

As I've spent the last month back home, about 2PM I start with growing anxiety, thinking that I need to get over to my mother's, wondering how she will react if I am later than she wished, wondering how I will balance the rest of my work for the day. Then it comes to me: I am free. I can put off that mantle of responsibility.

I have continued to wrap up some final tasks. Pay the last pharmacy bill. Get a refund for the unused days at her assisted living home.  But my brother now carries the load. I am grateful. My mother is, for the most part, happy to be there, and often even appreciative. She enjoys mountain views and meals with family. She is with family.

I continue to be surprised at the persistence of life, in the face of health challenges and even my own mom's disinterest in life. She has continued even though, for some years, she has seemed so weak that I couldn't imagine her surviving this long... and yet, here she is.  (It actually almost makes me sad, when I have just had two other deaths in the last couple of weeks, one of an energetic middle aged woman, and one of a tiny infant.  But, life doesn't work that way, where merit determines life. Not yet anyway.)

So, I guess the purpose of this blog has now reached its conclusion.  The blog is entitled, "As My Mother Slowly Disappears.  My story of caring for my mother as she goes into Assisted Living - what it does to her, to me, to my siblings, to my family."  But it is no longer "my story".   It is my mother's story, my brother's story.  For me, it is finished.

Wednesday, June 6, 2012

Wrapping up the story, Part One: The Move

It has now been almost a month since I brought my mother to New Mexico to live with my brother Bob.  I made some notes at the time of things I wanted to mention here, but only now do I have the energy and perspective to wrap up this story, our story.  I think this will have to continue across several blog posts, but if you will bear with me, I promise to bring us to a conclusion.

As we neared the departure date, there was much to do. Mom's business papers - I had to prepare them and organize them to handoff to Bob.  Changing addresses, contacting businesses to update them.  Bank accounts, investment accounts.  Create legal means to give my brother the Power of Attorney.  Extensive work to arrange rental of a Portable Oxygen Concentrator (POC) to allow her to have oxygen while on the airplane ($450!).  Working with our hospice hear to transfer her to care down there.  

Then there was attending to my mother's emotional needs.  She was pretty anxious, and I found myself constantly talking her down from a panic of one kind or another. She did alright, with time, but was very worried with all the uncertainty.  She thought she might "get lost" in Bob's house. What would she eat.  Would she be welcome. And so on. 

And there was packing up her apartment. 

The day came for the trip.  Overall, it went fine, but it was utterly exhausting for both of us.  I was pushing her wheelchair, juggling her purse and her (very heavy, bulky/awkward) POC, including trying to keep the battery conserved and plugged in, when possible, and then later changing the 10 pound battery mid-flight. When she needed to use the restroom in the airport, there was a long line, then the exhausting lifting her, changing the brief, convincing her to wash her hands.  By that time the plane was loading ... and there was the struggle to get her into the plane seat.  

By the time we got to Albuquerque, I nearly burst into tears with relief to see my brother and his wife. If there was a physical "key" to my mother's care, I could hand it to them and feel the weight off my shoulders. 

To be continued...

Thursday, May 10, 2012

The "big cry"

Wow.  It seemed so far away, and here we are... almost.

I will get on a plane, in two days, to take my mom to my brother's house in Albuquerque.  And then... poof ... she's gone.  I'm free of the responsibility. I go home a couple days later.  Home to ... NOT having to go visit, NOT having to pick up Ensure and yogurt.  NOT having to check her clocks every few days. NOT having to plan my day around when I can manage an hour or so to sit, possibly knit, and visit .... about nothing.  And everything.

I surprised myself today.

My mother has, for YEARS, said she needs to have "a big cry".  Even when my father died, in 1993, I don't believe she deeply cried.  She has trouble with emotions. But I think she aches to cry, to express the emotion that she wants to feel.  She talks a lot about "the bit cry".

Today, as we packed up the contents of her rooms, we looked at each other, and talked about our impending separation and she talked about the 'big cry'.

And I started to tear up.

It surprised me.  I have had such conflicted emotions about my mother.  Anger, resentment, tenderness, sadness, impatience.  Is it love?  I honestly don't know.. or haven't been able to say.

The last few weeks have been filled with logistics.  Arrange for legal transfers. Change addresses. Open new accounts, close old accounts. Pick up my brother at the airport at 2:30.  Rent the truck at 3:30. Call the helpers about when we're arriving at the apartment. Go to apartment.  Pack truck. Disconnect phone.  So, I've been playing Project Manager these last weeks.

Then ... this afternoon ... the tears almost came.  Welled up.  Subsided.

But it's about time. Tomorrow, my brother leaves at dawn with the truck. My sister arrives with her family midday. We hang out ... and Saturday (day after tomorrow) we leave for the flight to Albuquerque. I will stay to get her settled for a couple of days, then return home.  Free.

But between now and then, I know I will cry.  And that's a gift. I thought that my ability to cry about/for my mother was robbed of me, robbed by my anger and pain.  I will have the gift of tears, the gift of being able to mourn.  Because only with mourning can we move to that time that is beyond the mourning - days of peace, of (in time) knowing what's next.

When I was 17, I left home three days after graduating high school. And I sobbed for hours. I cried for things I didn't even know, wasn't even aware of.  Just blindly sobbing.

Now, finally, almost 45 years later, I will cry. And I will understand why. What a gift. Something I can own, emotion that finally can allow me to grieve, and then ... break free.

Friday, April 6, 2012

Past the expiration date

I am the family genealogist. I can easily spend a full day looking at nothing but research of the 1870 census for some long-lost relative, or look at name variations for immigrant great-great-grandparents.  I research facts, but also look for stories that bring these dry data to life ... the great-great-(great?)-uncle who went to the California Gold Rush and got swept overboard.  The ancestor who freed his slaves in Virginia and moved west in a covered wagon.  I even compiled a couple of books for my family, with photographs, census documents, ship manifests, enlistment papers, and so on.

As I scan these ancestors, I am noticing their life span.  Occasionally there are a few that get into their 80s, but many many die in their 40s, 50s, or 60s.  Life was hard.

And I recall my recent trip to Guatemala.  Life is still very hard there. I met people that I presumed were about my age, but then learned they were at least 15 years my junior.

Finally, the 1940 census was just published.  It's a huge deal to genealogists looking for details about where their relatives were in that year.  Did you know the Census Bureau delays the release of census data for 72 years?  I had heard that it had to do with the average life span when the rules were set up.

My mom, at 91, is clearly beating the odds. Past the 'expiration date'.  And, she knows it. She spoke again today about hoping to not be alive by the time she needs summer clothes...

And I'm aware of the time pressing in on me.  I'm 61.  In some places, or in another century, I'd be dead by now.

My own 'expiration date' looms. Not immediately, but I'm aware of the clock ticking.  I'm so very glad I'll be starting my adventure this summer, with our move to Guatemala.  I don't want to spend my final days flipping between Dr Phil and the Weather Channel.

This time I still have is a precious gift. I will spend it with people I love, doing what I love. I will learn and grow.  I'm so excited.

Thursday, March 15, 2012

Un-drowning myself

On my way to posting, I wanted to share this fabulous word in Spanish:  desahogar.  It means, to vent or relieve or unburden oneself.  If taken literally, you might say it means to un-drown oneself - "des"(un) "ahogar" (drown).  So, when I feel like I'm drowning in stress or worries or difficulties caring for my mother, I can "desahogar", either here or with my sister or a friend, and it helps.

I booked the flight when I'll take my mother to stay with my brother. It gives me an end date for my time with her, creating both sadness but a tremendous amount of relief. The sadness is that it may well be the last time I talk with her, since not long thereafter, we will retire out of the country.  And, the sadness is seeing her being cared for by my brother instead of by me. He will be fine, and while there will be some advantages (she will live in his home - I think), but some disadvantages (it sounds like he will hire someone to 'watch her' many many hours).  And, it's not me.  The the plus side is that I will have the freedom to start this next phase of my life, a true treasure.

Meantime, my sister has written me of her reactions. In fairness to her, since this is not her blog, I will just leave it that she is feeling sad that she is not more part of this transfer. I feel guilty, like I did something wrong, though I know we have been talking about this (including her) for months ... and my pulling the trigger on the airplane ride just represents the final act of removing her from the Midwest where both of us life. But all these old family dramas play out, even in a way competing to be the 'best child', overtly or covertly or unknowingly or inadvertently.

I have been getting emails from my brother and his wife, and some seem to smack of a bit of self-righteousness and superiority. Maybe my emails to them have seemed that way over the last years, but I don't think so.  I'm trying not to be hypersensitive.  And, if that's the price I pay to have my freedom, then, fine.  Brother, you may have the blue ribbon now, Best Child, 2012-20??.

But I'm sad that my sister is troubled and feels excluded.

I visited Mom yesterday, and some conversation shook me to the bone. Somehow I was talking about my grandchildren, 9 and 11, and about their growing-up years.  She mentioned something vague about when I was that age, and as we sat quietly, I began to reflect on how horribly unhappy I was in my teen years.  Though I have rarely done so, I shared with her how miserable I was in those years, and told about a time when I was doing dishes at the sink, looking outside, and desperately wanting to shatter a glass and cut open my veins to kill myself.  When I finished telling her that, the room was quiet. She turned to me and said, "Where was I?"  I said, "Mom, I don't know.  You were 45 and had your own life to lead."  (Not the greatest response, but she was just not someone I could have gone to.)  We sat quietly some more.  Then she said, "You always kept things to yourself, closed off".  (Yes true, out of survival.)  More quiet.  Then she said, "Well, I tried" referring to her efforts back then.  (No, she didn't, not much if at all.)

She didn't see my tears - not back then, nor yesterday.

As I was cleaning the wineglasses we used last evening, I broke one.  It was the next-to-last wineglass of a set that she really liked.  I apologized, and cleaned it up.  I swear I could almost hear her bring up Kazuki, as she has before.  Kazuki was a prized porcelain Japanese doll/statue, maybe 15", that she received as a young child in about 1925 from an aunt who had traveled to Japan.  It was a treasure, and when I was maybe 3 years old, it was on the hearth of a fireplace, and apparently I broke it.  Mom has brought it up now for six decades, off and on.  I am 61, and I swear that wineglass was Kazuki all over again.  Those unspoken words, those old resentments.  Feeling ashamed for being human.  Finally, Mom's words were, "It was inevitable".

Inevitable.  Jeesh.

So, I have been drowning in sadness since last night.  I'm trying to work through it. To allow myself to be human, to support her in these last weeks here while also supporting and shielding myself.  But it's good to vent, to unburden myself, to "un-drown" myself, to "desahogar" from what has choked me.

Tuesday, February 21, 2012

Eh? What's that you said?

When I got back from a recent trip, Mom was doing OK, but struggling even more with her hearing. When my sister and her husband came a couple weekends ago, we went to Olive Garden and Mom just sat there, stone silent, staring at her soup.  She had been grouchy to my sister earlier, and didn't act interested in engaging at all.  Finally, after talking to her afterward, we determined that that she was just totally out of touch due to advancing hearing loss.

We all agreed she really needed to get hearing aids, even though she insisted that she will die soon and 'don't waste the money'.  All us kids, though, told her that this is exactly why she saved her money all these years, and that we wanted her to have the aids.

She got them!  Though, yikes, they were expensive!  $5400! (Starkey Wi series). And for a depression-era-person, that was hard.  She still complains that her hearing is not perfect, that the hearing aids are tinny (they are; the ENT folks said her brain will grow accustomed to the new sound). We got the high-end ones so she didn't have to fuss or adjust them. Supposedly plug-and-play.

Still, her negativity continues to play out. Complaining about the tinniness of the TV, complaining that she "can't hear anything better" - then in the next moment she comments about how she can now hear this or that noise. Complaining about the difficulty of inserting them, about keeping them in when she takes on/off her oxygen tubing. Then I come in with my Little Miss Positive, pointing out the plus-side, and she reluctantly admits a few benefits.

We go back tomorrow for an adjustment and check. Maybe we'll keep them, or, maybe we'll find a better model. We'll see.

Saturday, January 14, 2012

Dementia, and a wonderful blog post

I found a touching blog post on a lovely blog, Dementia Days.

There is a video there, at, of a lovely example of Validation Therapy, working with an advanced Alzheimer's patient. It was so touching.

Though my mother doesn't have Alzheimer's, it is a great example of respecting an elders' boundaries, while still using their 'vocabulary' and being present for their reactions, even when their apparent cognitive abilities have disappeared.

Beautiful. Please explore the other posts in the blog.  It's lovely.

Disappearing ... both of us?

Mom, disappearing ... the theme of this blog. I would like to revisit this theme, if you don't mind. 

Since my mother will be moving to my brother's in a few months, I am conscious of the need to clean out some detritus, especially in organizing, clarifying and purging old business papers. And when she moves, she will not have her bed or other equipment that belong to hospice here, and will receive same down in New Mexico when she arrives, from their hospice service.  She has said she doesn't need the television ("I can't see it!") or much of other furniture.  Her footprint, her presence, shrinks even more, as she awaits death with hunger. 

Yet, with my own move to Peru on the approaching horizon, I am finding my own life-footprint has dramatically reduced. Instead of my 5-level 4-bedroom 3-bath house, I am in a small apartment (and LOVING it). Instead of an office overflowing with paperwork, we are constrained to a few plastic tubs, and trying to scan ourselves down to almost nothing. Instead of a cherry dining room table seating 10-12, we eat on a card table.  And we are LOVING it! 

We have divested ourselves of most of our family heirlooms, either by giving them to willing descendants or where none exists, to friends who will treasure them and the stories we've shared about the pieces. When we actually leave the apartment, what remains will go the way of the other ones.  We have given away sterling silver flatware, serving dishes.  Limoges china. Antique hand-painted teacups. Linens. Rocking chairs and china cabinets. Photographs. Recipe boxes from long ago. Damask tablecloths and handmade aprons. A thousand little treasures that I enjoyed seeing, touching, to a point ... but that I rarely used, and that buried me under the weight of other people's lives. 

Ten, twenty years ago, I treasured these things. Now they choke me. I drown in their shadows. 

In a sense, yes, I might be said to also be disappearing, in the sense of the detritus attached to us is dropping away. We are less 'significant' in the sense of our perceived stability, or our being Owners of Important Stuff in this world. 

Instead, I feel a thousand pounds lighter. I feel like I can sprout wings and fly. Free of obligation to sit at the Altar of Ancestors, holding onto their things. Soon, we will be down to our two suitcases, flying to Peru, awaiting an unparalleled adventure.  

Even if we have to come back to the USA, eventually I don't think we'll miss all the stuff. Meantime, I will look forward to growing old in the Andes, overlooking an unimaginably beautiful vista, helping others and growing old in peace with incredible richness of life. 

My mother's slow disappearance is inevitable. Mine is more abrupt, more by choice, and I am utterly thrilled. 

Monday, January 9, 2012

The big family meeting, and a future move

I've dreaded posting. We have been going through a tremendous change here, and I have struggled repeatedly how to share it. I have several drafts started. I wonder if I'll even post this.  Well, I need to start somewhere, eh? So, let's go...

I wrote here in November that my husband and I want to move to Peru, to retire next summer. When I started caring for my mother here almost five years ago, I didn't dream it would last so long, and hadn't anticipated this day. Still, it arrived.

My brother and sister came here over the holidays, and we had a family meeting, with Mom. I told her I am leaving early summer for Peru. She had about ten seconds where she looked shocked and a tiny bit emotional, then quietly listened. My brother held her hand as he talked about what he offered - to have her live in his home with him and his wife. My sister talked about how she would like to have Mom in an assisted living home there, though her own health (advanced rheumatoid arthritis) and job and climate make it less than ideal. We said my daughter offered to have her in Wisconsin. So, as of the end of the meeting, she was - shockingly! - accepting of moving to the Southwest with my brother.

I was flabbergasted.  When I expect graciousness, she is negative. When I expect ugliness and pleading and negativity, like with this move, she is lovely and accepting.  Wow.

She has continued to be (mostly) OK in our visits since then. Since I had been talking about Peru, she knew it was a deep desire of ours, and a strong intention - she just now learned the "when".  I am still dumbfounded that she hasn't begged or pushed back yet.

She is anxious about little things.  Getting on the plane - that is, physically stepping onto the plane from the jetway. Will she get lost in my brother's house. Who will dress her in the mornings. OK, those aren't really little things - but they show she is thinking through her life, how it will be, and I think that is excellent.

We've had some vacillations, though.  My brother called one day to tell me he was having "second thoughts".  This was extremely frustrating, since Mom was now counting on this option. It is understandable that he would be concerned about the impact on his family - but BOY do I wish he had thought about that PRIOR to making this offer (and being the big hero of the family meeting). (I think he has come back on track to offer to have her there with/near him.)  Also, Mom has had some time when she thought maybe she could just stay in the assisted living home where she lives - but we talked about the extreme loneliness and the importance of having a health-care advocate who is local (among other things).

It has raised some family issues, however. I am the one with Power of Attorney for legal matters, as well as the co-trustee, which means I have the purse strings. I will need to make financial arrangements to ensure my brother has funds to care for Mom - but he strongly strongly wants to have the controls passed to him. Unfortunately (?), we can't make changes now, since Mom has a diagnosis of dementia. He feels belittled and out of control, which I guess I understand, but he needs to learn to trust that it will be OK. We will devise some strategies to make sure he is very well funded to handle her needs.

I am deeply grateful for the willingness of him and his wife to do this. It's a huge deal - whether she is in the house especially, or even to have her in a nearby facility.

I am also tremendously relieved that I have an end-date in sight, so we can start this new chapter in our lives.

Of course, Mom finishes each chat with comments about how this may not even happen, that she eagerly hopes she dies before this comes to pass.  She continues to be ready and hoping for her life to end, the sooner the better.  And I say, yes, Mom, that's true.  Let's see.

Thursday, December 8, 2011

"In and out of dementia"

My mother called today to tell me she is "going in and out of" .... ummm  ... and we finally determined the word she sought was "dementia".

She feels out of control. Intermittently confused, lost.

She wanted me to 'note the date' of the inception of this decline.

Then she was ready to hang up the phone.

Sad. That's all.

Wednesday, November 23, 2011

A marathon, a 5k and a 100-yard-dash

During most of my adulthood, it was my (younger) sister who lived closer to my parents and was the primary child who did the supporting and engaging. Both my (older) brother and I lived out of state and were busy with our lives. She was the one who went for holidays or visited most often. She had the longest run - about 40 years, though rarely intense on a daily or weekly basis.

She had the 'marathon' - the longest run.

Then almost five years ago, our family realized that Mom, now widowed, needed to move closer and get some help from one of us.  It seemed logical at the time for her to live near me, mostly because I live now where she raised her family, and she felt connected to the area.  So she came here. I've visited her daily or almost-daily for over four years now.

I have had the 5k run.  It's lasted a while.

But I'm tiring out, and I am wanting to do something else.  My husband is able to retire anytime, and we are planning a move to Peru to retire and volunteer.  Yet, I keep making laps on this track.  The same track, the same routine, the laps that seem endless. We keep thinking we're near the finish line - mom's own desire that her weary life ends - then she bounces back and we head around the loop for another lap.

Meantime, my husband waits in the stands.  He has had heart disease and a family history of cancer, and is five years older than me, and we are eager to go to our own next step in life. I am acutely aware of time passing, and that I want to get off the track and have the freedom to have our next (last?) adventure together.

Also, some changes will occur in my mother's financial resources in the springtime.  This is a good time to consider a change.

So, I have opened discussions with my sister and brother about what to do. They have both indicated a willingness to have her closer, though my brother (and especially his wife) have said they could have her in their home.  Their home is perfect (one story, broad hallways) and their location is warm (Albuquerque). It is perfect.  Plus, my sister's home with steps would make it impossible to have Mom in the home and my sister's advanced rheumatoid arthritis would make it impossible to have my sister help with wheelchair outings to doctors or restaurants. So ... we are thinking that the next step for Mom, assuming she survives, will be my brother's home.

Yet, while my brother was the golden child growing up, the beloved firstborn son, he may not be my mother's first choice as a caregiver. She assumes that one needs a uterus to be a nurturer.  My brother's wife is willing to adjust her work schedule, and she is funny and caring. Plus, hospice can continue helping with her care in their home. We kids are pretty concerned that Mom won't react well to this change, but we will be persuasive, and I really think she'll end up loving being so closely connected to family in her last weeks or months.

He may have the 100-yard-dash, the briefest but most intense run.

Each child will have had our own race, our own turn to be close to Mom.  Seems fair to me, and I'm ready.

Thursday, November 17, 2011

Another year coming ... and going

Most of us welcome the chance to enjoy another year of life. We try to eat well, visit the doctor as needed, we exercise and fight for life. We take our vitamins. We greet our anniversaries with relief to have survived, and hope for another year. We resolve to do even better next year.

But, when someone is 91 years old and in lousy health, it's just not so fun anymore. She can't walk more than 10 steps (with her walker) without resting. She naps at least three times a day.

When I visited Mom today, she felt defeated and depressed. She has been hearing about Christmas on the television, and sees the oncoming holiday as a marking of yet another year when she has failed to die. She is weary, just bone-weary. Weary of life, weary of each day, each hour. Weary of the effort. And another holiday mocks her, reminds her of even more time passing as she yearns for her own end.

She said she figured out how she could speed her demise .... by not using her oxygen. She decided not to do that, but she thought about it. (Ethically - is that suicide? Or is it merely allowing a natural process to play out, while not availing herself of all possible remedies?  I wonder.) 

I found that she had done some water-colors over the last week.  She had used the cheap brushes, not the treasured old brushes she's had for years (the ones she clutched to her heart in gratitude, nearly weeping with joy, when I brought them back to her).  I asked why she wasn't using her good brushes, and she said it was just too much effort.  So she's using cheap WalMart brushes instead of reaching eight inches to open a plastic bag with some beautiful camel-hair brushes... just out of tiredness.

She and I hugged for a long time, a long and strong hug, her clutching me and clinging in desperation. In sadness.

As I said goodbye, I wondered whether this was the last time I'd see her alive. I wonder.

Thursday, October 27, 2011

What song would you sing about your mother?

I went over to a friend's house, a Guatemalan family, where we did karaoke along with other guests from Mexico (I speak Spanish fluently). The hosts didn't have any 'American' songs, so we just enjoyed a fun evening of robust singing of very sentimental and classic Spanish songs by the likes of the famous Latino idol Pedro Infante. These songs were as well known to the other guests as would be, for me, "Blowin' in the Wind", or "Big Girls Don't Cry" or "Somewhere Over The Rainbow". So we listened and joined in to the extent possible, and had loads of fun.

One song came along tenderly addressing the singer's mother, talking about how sweet and gentle and loving she is, how tender and giving she was. The singer adored his mother, missed her terribly. My misty-eyed Guatemalan friend spoke tenderly about her beloved mother, and showed me a picture on the wall of a warmly smiling and round mamacita.

And I felt so alone.

I really tried to imagine how that felt, to have such a tie, such a fondness. To be able to feel so warm and filled with rich and loving memories, to have felt so secure and nurtured. To miss one's mother so terribly. I felt like I was trying to imagine some foreign culture, some alien life. It's like there is an empty space in that part of my heart, a space that never got filled.  I grieve that loss.

My father died in 1993.  I have never missed him. I have never cried at the loss, and feel utterly no need to do so. I have never wondered, "What would he say about this or that?" Not once. It makes me sad to admit that... a loss for him, a loss for me. But, that is another subject.

Make no mistake ... I continue very engaged in her care. I tell her I love her, and I do. She has suffered some possible cardiac problems over the last few days, and I'm very worried and am talking to staff to ensure the best care, and I am going to see her to hold her hand. This post may sound cold, and that's not the whole truth of the matter. I feel tenderness toward her, and she expresses her gratitude and her desperate need for me. We laugh together and spend time together. We have a glass of wine and dinner each Tuesday. I pick up her room, and bring her treats.

If I were to compose a song about my mother, I could honestly say she had a sense of humor, she was intelligent, she was articulate, sharp and observant. An excellent speller and perfect grammar. I could write a verse about how she gave all she could, based on her own coolish upbringing. But I'm utterly unable to wax poetic about her sweet warmth or rich love or tenderness. It feels weird ... and very alone.

Tuesday, October 25, 2011

A close call, and a disappointment

Mom called me Sunday morning to say she had chest pain and a feeling that an elephant was sitting on her chest... a classic sign of a heart attack, though she did not have other signs (sweating, nausea, shortness of breath).  From some tests she had five or more years ago, she does have some blocked arteries, so a heart attack was possible, even probable.  This event lasted a couple of hours.  They gave her a pain pill (half a hydrocodone).

Of course, I went directly there. The staff at her home fussed over her, and called hospice. The hospice nurse came and evaluated her and stayed with her for a time. I was there, holding her hand and talking with her. I called my siblings and my daughter, who is a paramedic.

As she slowly improved, she perked up. She enjoyed the attention. It felt good for her.

After the event passed, and it was nearing time for going to lunch down the hall, she said she felt really disappointed. She couldn't articulate why, but she asked if I understood. I said I thought so, for two reasons. I thought she was probably disappointed that her life struggle had not ended that morning, that she needs to go on living a life that she is not enjoying.  She nodded vigorously.  I said that, secondly, she probably enjoyed the people fussing over her, showing they cared for her and would help her ... and that maybe she was disappointed that all that attention had passed.  She said yes, you do understand.

I guess we all enjoy some attention. Some fussing. A reminder that we matter, that we aren't invisible. That if we are nearing the possible end of our lives, there are some people who will break their busy routines and pay a little attention. Notice us. Show kindness. We are all hungry for a bit of love, especially in the face of our own death, which we must each face alone, profoundly alone.

Monday, October 17, 2011

To Shep and Buddy - and mom

(I had posted this several months ago, but it was too painful to see 'out there', and I pulled it from the blog.  However, I decided to repost it. I think it's time...)

We have two dogs that we rescued from a shelter, Shep (on the left) and Buddy. We got Shep about 7 years ago, and Buddy about 6 years ago, although the shelter could not tell us their ages when we adopted them.  Shep came to us as a wildly energetic dog; we got Buddy as a companion. Buddy, who had been in the shelter a long time before we came, was very subdued; they thought he was an elderly dog because he just seemed so weary.  We hoped they'd balance each other out.  Over the years and now, Shep has become more timid and clingy and tired and in pain, and Buddy has recovered completely and is the more energetic of the two, and may even be the younger one. He certainly acts like it. They have had a great life, with loads of love and a huge backyard.

The very very sad fact is that we can no longer care for them. I was laid off three years ago. We are selling the house to move into an apartment, where it will be impractical and unfair to care for two large dogs. Next year sometime, we expect another move where pets will be completely impossible.

Thursday we have an appointment with the shelter to bring them in for a 'surrender', (although we may have found a home for Buddy already; we hope...). It is a 'no-kill' shelter, as long as the dogs are assessed by their vet as being "medically adoptable".

And, I believe that Shep will not pass.

At that point, we have the option of taking Shep home, or allowing them to put him to sleep.  We just can't keep him any longer.  We can't keep this decision suspended when he has a medical problem is hanging over him. It's time.

So now, every time I see him, I see his fate. I know the likely day of his impending death.  Thursday. Yes, I try to cuddle and love him as much as possible now... but it feels so awfully sad. And extremely weird. And filled with guilt and regret.

And I think of human life.  What if we literally KNEW the day of our own impending death? How would we live it differently? What if I knew the exact date when my mother would die? What if she knew?

I know the adage about living each day as if we would die tomorrow (or, next week, month). Say what we need to say to those we love. Live fully. I get it, and try to do that.

But still, what if we really knew?

And I look at Shep, and just want to give love and cuddles and say, I'm so sorry, but very soon you won't hurt anymore. And ... in the back of my mind, I think of my mother, and the NOT-knowing-ness. I honestly don't know what to make of it, except to keep loving and showing kindness and being patient with her. That her own life force will eventually end of its own accord, with no interventions to either speed or delay death, and I hope, it will be peaceful. As will be Shep's.

Monday, October 10, 2011

The sad doll and hospice care

When I was a child, maybe 8 years old so about 1958, my parents got me a doll with a really sad face.  It was something like this photo. I tried desperately to make the doll happy, but obviously with inert plastic, I was doomed to failure.  I could not change the unchangeable. I was utterly doomed.

Flash forward about a half-century...

My mother got a visit from the director of the hospice program, Cathy, who was introducing a new hospice nurse. Later Cathy called me to say they'd like to start a couple of new interventions:  antidepressants, and bringing Mom (an artist) some watercolors.

For some reason, both suggestions really irritated me.

I tried very hard to not just shoot down the ideas. I didn't want to be perceived by hospice as a difficult family member.  Nor do I actually want to BE that difficult person.  And I knew my reaction was irrational.

But we've done this before.. both the antidepressants and the watercolors. For the antidepressants, she tried them twice and had side effects twice, and quit them. For the watercolors, we tried that repeatedly too, at her last assisted living facility where they moved the class to just steps from her room and she still chose not to participate. Then I set her up in her room with an easel, good watercolor papers, her own professional watercolors and brushes, even water. She just was not interested - even when I offered to do it with her.  It was just easier to sit in her chair and watch TV.

But now, to state it from the standpoint of my internal overreaction... the director of hospice has become engaged and will solve her problems. They will make a 91-year-old chronically negative narcissistic person into a happy productive artist with a life full of meaning. Of course, I know that is not the real intention, just an incremental improvement, but it felt like hubris, like a doomed effort.  Deja vu.

I really wondered... why did this irritate me so much?  I want the best for my mother. I truly do prefer her to be happy and enjoy what time is left. So why did this call bother me so much? I really knew this was about me, not about hospice, who are kindly doing all they can to bring comfort to their client.

Then it hit me... I spend my life trying to make my mother happy. My efforts fail. I am now 60 years old, and still trying to make her happy.  For instance, I asked her how was her night... "terrible!". I ask her why, what's wrong, but she can't say ... but just then tells me about a good dream. Then I ask her how the new lift chair is, and she says, I haven't decided yet.  I remind her that the chair helps her get up and be more mobile, yet she still refuses to say she likes it.  I take her to see autumn leaves, and she insists she can't see, although she can see the clock on the wall. And on and on.  I look for positive things in her life, and she looks for the dark side. The hopeless.

Trying to make the dolly smile.

So, if hospice can put her on pills, and if she gets even just a bit better, fabulous. If hospice brings in watercolors and my mother actually uses them even once or twice and enjoys it, wonderful.  The dolly will smile.  Maybe just for a moment.

Thursday, September 29, 2011

Smoke and ashes

I posted this about a week ago, but found myself terribly uncomfortable to have so much very private history made public. No one responded (except a friend, privately). I have no idea if just no one read it, or if they read it and found it repulsive or terrible uncomfortable.  I un-posted it for a time.  It's now going back up, but I don't know for how long. Courage and honesty is one thing, but this may be another, especially if I don't get any comments.  But, here goes. Uncomfortably, I'll press Publish again. 

Over the last two weeks, anticipating a move from our house, I have been purging my basement of about ten years' worth of material from therapy.  They were awful, awful days, those ten years, of vomiting out loads of pain and grief and anger and anxiety I'd held locked inside.  For a few years now, I've been done with therapy, really really done, and a thousand times better.  It was time to let go of the detritus of my therapy. As I burned the material, I watched the smoke curl upwards, and ashes drift across the grass on this beautiful day.  I tried to catch some of the larger ashes, and they crumbled in my fingers.

Over the years, I have kept my mother mostly in ignorance of the extent of my therapy and pain. Let's just say that she was there when I was absorbing the pain and fear at the beginning, and the few times when I shared tiny pieces of my recovery with her, her response was not what I might have hoped. So I have completed my internal work without her, and I am glad of it. 

And yet...

In recent days my mother talks about feeling her own death is quite close.  Not just what she has said for years, "I want to die".  No, she now says that she feels she WILL die in the next days, perhaps weeks.  And I see her weakness, her utter weariness, her lack of appetite, and I believe it is possible.

As I look back on that bonfire, I have been reflecting on the symbolism of the smoke and ash.  It was so difficult to get to that point, but now it has been consumed so easily. It has disappeared into nothingness. I no longer need to carry all that. And my own mother, her own history, her own hopes and dreams and disappointments, her own behaviors as a mother, her own pain, will soon disappear just as quickly.

I celebrate that I have been able to spend the last five years caring for my mother without being crippled by the past. Being an adult with choices, with power. I have been able to find a way to love her, to be tender and kind. I'm so glad we've had these last five years. I've become whole.

When she does die, I'm sure I'll miss her, to some degree, but I also see her passing as a moment when I pick up the ash and it crumbles in my hands. She has no more power to hurt me. I will burn away any remnants of the grief and I will be left with some of the love that she surely intended to give me, even though she wasn't really able to love as she might have wished.  But me?  I will be free, with my face in the autumn sun, a cooling breeze and dear friends at my side.

Monday, August 29, 2011

Carcinoma ... 'to treat or not to treat, that is the question'

With apologies to William Shakespeare, we experienced an echo of his famous question, 'to be or not to be'.

Mom had a spot on her forehead that has bothered her over the past year.  Her fingers constantly fly up to rub it.  It is barely visible, and it didn't seem to be hurting anything, so I was mildly irritated by her obsession with this bump.  It seemed silly and vain to me, to be honest, kind of like her urgency to keep a stock of depilatory to remove her (barely visible) upper-lip hairs.

Still, I took her to her regular doctor - twice. He used a substance to try to freeze it off - twice.  Each time it came back.  The third time he referred us to a dermatologist.  I admit I still felt it was just not that big of a deal, though I saw that it had grown quite a bit, so I arranged my schedule to get her to another doctor visit.

After a biopsy, it came back as Squamous Cell Carcinoma In Situ.  In the photo below, the one with the circle was the target of the biopsy.  The other larger one remains.

The question now became ... what's next? What treatment will we choose?  She is 91, on hospice for congestive heart failure, but she could survive for a few more years.  What to do? 

The dermatologist prescribed a course of Aldara, a cream chemotherapy.  After reading about it, I became convinced she would not tolerate the pain, itching, bleeding, and other awful side effects.  In talking to the doctor, we learned that the options are: 
  1. treat aggressively with Aldara and suffer the side effects (though the doctor said they are 'not that bad') 
  2. treat less aggressively with Aldara and suffer fewer side effects, possibly slowing any growth
  3. treat it surgically (to slow it down), but that would likely require a skin graft
  4. not treat it, knowing that any resultant possible spread of this 'very slow growing' and 'surface' cancer would take more years than she likely has remaining in her life. 

She chose Door #4, not treating it, and I fully support that choice.  

This was a very sobering consideration, reminding us of the quality of life vs quantity of life. We talked again about her choice being on hospice, choosing not to use life-extending measures. 

So, returning to our friend Mr Shakespeare, we read on:

To be, or not to be, that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die, to sleep,
No more; and by a sleep to say we end
The heart-ache, and the thousand natural shocks
That flesh is heir to: 'tis a consummation
Devoutly to be wished. To die, to sleep;
To sleep, perchance to dream – ay, there's the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause – there's the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
The oppressor's wrong, the proud man's contumely,
The pangs of disprized love, the law’s delay,
The insolence of office, and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovered country from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprises of great pith and moment,
With this regard their currents turn awry,
And lose the name of action. Soft you now,
The fair Ophelia! Nymph, in thy orisons
Be all my sins remembered.

Sunday, July 17, 2011

True disability

Disability ... a term filled with sadness, regret over what one can't do.  I remember that my father used to get very upset upon hearing that word, after his amputation, instead wanting to focus on what he could do.

My mother could be considered 'disabled' now.  She uses a transport chair to get around. She walks with difficulty, if at all. Her mind is sharp, but her physical abilities are limited.

Yet, last week we went on a trip to visit her old friend, and I have walked away realizing again, that her greatest disability is not her physical constraints, but her unwillingness to expend herself mentally and emotionally.  She has admitted she is lazy, and I haven't seen any evidence to contradict her. She admitted she is 'non-participative', and I agree.

We spent the day with her childhood friend, the same age as her.  Her friend is not as physically-challenged as my mother, though she has recent changes in her state of health. But she has stayed engaged with life, curious, eager to know more and to stay connected.

In contrast, my mother just sat in her chair, staring into space.  She didn't ask questions about her friend's recent loss of her husband, about her children or grandchildren, or about her health. Mom just sat there, and when she spoke, she commanded.  "Give me a kleenex!" or "Take me to the bathroom".

I have become very friendly with this friend of my mother's, and she expressed shock at my mother's decline and her commanding tone. We spoke later, and she told me about my grandmother (whom I never met).  She would tell her family that she felt weak (feigning illness? or, ill?), and all would dance around her, and do her bidding. And my grandmother would take my mother to the department store (with her friend), and buy her 2-3 dresses at a time - during the depression, when they were in financial straits to the point of losing their house.

My mother grew up in an environment where she felt entitled, privileged. She married my father, who adored her, and she continued as the princess.  My father 'carried her' socially, making the friendships for her (then breaking them when his temper caused a rupture).  But my mother just remained passive, waiting for good things and for people to come to her, to entertain her, to worship her. When he died 15+ years ago, she has just slowly withered with boredom.

I honestly believe that is her true disability - her unwillingness to give of herself, her unfamiliarity with even HOW to engage with others. It's like speaking Chinese to her when I talk to her about it.  She is crippled by her own self-absorption.  She is hobbled by laziness and disinterest. That is the tragedy - she could have had such a rich life, had she been willing to do more for herself and more for others.