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.

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.

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.

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.

Dementia, and a wonderful blog post

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

There is a video there, at http://www.dementiadays.com/2010/07/a-video-worth-watching/, 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. 

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.

"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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Tragic.

Settling for good enough

In our childhood, we dream of marrying a prince (or, in my case, a Beatle: Paul McCartney was MINE!), or being a cowboy or cowgirl or being a sailor on a pirate ship.  Or .... what was your dream?

In our young adulthood, our dreams have moderated, they have settled into something more realistic but more concrete.  And we imagine, if we are an archaeologist, that we'll find the next King Tut's tomb; if we are a scientist, we hope to cure cancer. If we are in business, we will found - or be part of - the next mega-corporation.

When you're 90 years old and facing possible amputation due to a toe that does not heal, news of tiny incremental improvements bring great pleasure.

Yes, Mom's toe is ssssllllloooooooooooowwwlllyyyy getting better.  Yes, it's pink, but at least it's not red.  Yes, it's swollen but not uber-puffy as before. The pain is still there but the nail is almost now gliding over the top of the skin - 'just a week or two more, Roberta'.

During this time we've addressed some matters that should help with blood sugars.  She is going to have yogurt as a midnight snack (80 calories) instead of the Ensure shakes (240 calories).  (Diabetics as she is need a midnight snack to avoid overnight low-blood-sugar problems).  She will have no orange juice at breakfast, or if they give it to her anyway, she will just have a few sips.

Sometimes we just need to settle.  She isn't enjoying a 10th decade in robust health, but she is getting by, she will probably have both feet to help her with her beloved walks, and she has family and a home where she is well-cared-for.  For now, for her, that's good enough.

Now if only her daughter (me) would visit for 4 hours a day.  THEN life would be PERFECT.  Sigh.

Hospice services ... a delicate dance, a partnership, to support my mom

Things feel like they are going downhill in the hospice services that Mom is receiving.

We started out loving her hospice service when she started over a year ago (for congestive heart failure).  We had Margaret who was a funny and sarcastic nurse with a gravelly voice but who was great communicator. (Margaret died, tragically).  Then there was Sandy, whom we also really loved - quieter but solid and clear-thinking.  (Sandy moved out of state). 

But in between, we've had a number of interim nurses whose names have disappeared from my memory.  Some who had less reliability, or who seemed disinterested, or who just disappeared, and on to a new one. 

Right now we have a hospice nurse, Mike (whom Mom always calls a "male nurse"... sigh).  He is one of the senior nurses in the hospice group, but he's a bit odd.  OK, quirky is OK ... I actually really like quirky-ness.  But he is a bit loud and quick to talk but not as eager to listen. My sister was creeped out when he came in and gave Mom a big kiss (on the cheek), saying "I gotta get me some sugar" or something similar. Today he described how much he likes my mother, and claims she pinched him on the butt one time.  OK, that doesn't sound like her, but OK.  Quirky. 

Last week, I called him twice and asked for help with the infected toe.  I never got a call back, which is odd, so twice I called the office and said I hadn't yet gotten a call-back. Finally we spoke, and he found he didn't have the correct number. I guess that happens (even though my number is all over the records there).  Yesterday I called and asked (for the third time) for results on a test, and still no call-back.  This guy is getting on my nerves, with no routine communication to me and not even the courtesy of a call-back. 

C'mon, Mike.  I'm patient up to a point, and try to be understanding about lost phone numbers and your days-off. I know you're busy.  Maybe you view family members of hospice patients as a distraction? But I am your biggest ally - or I'll be calling your boss again. Please let me be your ally and partner in caring for this sometimes-difficult but weary old woman, OK?

FOLLOW-UP:  Mike finally called back - several times with individual new bits of information. We finally had a good conversation about Mom's heart function and her blood sugars. He still hasn't yet been back to the office to get the results of the Holter monitor heart function test that occurred a couple months ago, but he will tell me tomorrow.  And, he said that the doctor has ordered an echocardiogram on her in a month or two for pulmonary hypertension. 


I just have a sense that Mike is overextended, and always in a rush.  He throws out comments, like "just between us - be sure to keep on the facility on her blood sugars", but they ARE doing blood sugars 4x a day.  It is he who has not looked at them!  I know that hospice work is difficult, and that my mom is not one of the urgent very-end-of-life cases.  Her needs are more chronic, but she too is dying.  Her intake is diminishing. She is nearing death, presumably.  I need to stay more connected with Mike. He may (or may not...) know exactly what is going on with Mom, but I want and need to know too.  This is part of the package. 


I also will accept on myself the responsibility to be the squeaky wheel.  If I need more conversation with Mike, I need to persist in asking for that (as I've done before, and as I did today).  We did have a good conversation finally this afternoon, and I expect more information tomorrow.  In life, usually have a strong ability to ask for what I need, but sometimes I forget when dealing with emotionally-charged situations like this.  I somehow was surprised that I'd need to do so with hospice - but though they are a caring agency, they are also very busy humans. An important reminder to myself.  Just ask, even if I have to ask a few times.


This is a delicate partnership, a dance, a shared relationship to support someone - to support my mother - in the last days or weeks of her life. With effort, we can work it out, to her benefit.  

It's just a toe...

Mom started complaining a few weeks ago about an ingrown toenail.  A podiatrist comes to the assisted living center where she lives, so I hoped that doctor could take a look at it when she arrives, but it got worse quickly.

And - she is diabetic.

And - her diabetes is not in good control.

She is pretty good with her diet overall, but does indulge in desserts at times. When her sugars are high, she always says "Better high than low." That is true in the sense that she has had numerous serious low blood sugar events, and these are immediately life threatening. High blood sugars have long-term damage.

So, her ingrown toenail has become quite serious very quickly.  When I took her to the podiatrist's office, it looked awful. I'll spare you the details, but over the last few weeks, we've been aggressively treating it with antibiotics, creams, cotton, her foot being elevated, and epsom salt soaks. She is being transported in her wheelchair instead of her preferred walking. Slowly, it is improving.

We went through this with my father. He was also diabetic, in poor control.  He ended up with an amputation below the knee - but he was about 70 and much more able to rebound (prior to his death a couple years later).  On a 91-year-old woman?  Not so much....

Yes, just a toe.  But it could end up being the greatest single influence in the remaining time of Mom's life.  She has been really grouchy about the limitations and requirements to treat the toe.  But I've reminded her of the inconvenience of living with an amputation. Now, that's a bummer.

So, back to Epsom salt soaks and elevated foot and creams and antibiotics. And, please Mom, hold the grouchiness.  We're trying to save both your life and your quality of life.