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...

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.

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.

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.

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.