Tiny stitches

After the excitement of the reunion, we are returning to our routine of daily visits, weekly dinners.  Daily comments about wanting to die, followed by my retort about living every moment one is alive. Weekly visits from the hospice nurse.  Daily checks of toilet paper, sore toes, clock accuracy, and making sure the shakes are pre-opened. We are both somewhat tired of it, yet she still treasures my presence, and expresses appreciation.

Today we had a little hiccup.  She had hallucinations this morning, probably due to a recent change in a medicine or perhaps a UTI, but a rush of anxiety and concerns about its implication.   Medicines are being adjusted, and we expect to return to our normal.

After the flash of adrenaline, I returned in my customary visit routine, but really wanted a fresh view.  And it occurs to me that the daily visits, though insignificant individually, constitute those tiny stitches in a petit-point piece of embroidery, a mother-daughter portrait perhaps.  Each stitch isn't really much, but is carefully made to ensure the end product is achieved.

My mother's friend Mayme was making a needlepoint pillow, and on the day when Pearl Harbor was attacked, she added a special stitch, perhaps red, to mark the moment.  How a single stitch captures such an impactful event.

So I continue to count the threads, pull the needle up, push it back down, straighten the thread, count the threads, pull the needle up, push it back down, straighten the threads.  Work until the needlepoint is done, in tiny, nearly-invisible individual stitches.

What's next ... in my very-alive After-Life

Is it wrong to peek around the corner when I'm firmly planted here, helping my mother? Is it disloyal or evil or even just plain tacky?

No.

It's like when you're planning a vacation.  You know you're not THERE yet, the departure is some time in the future, but it's nice to look at websites or travel books to imagine what you'll see and where you'll go.  It's part of the pleasure of the adventure, that anticipation factor. Do a little shopping, get your passport in order. It brings a measure of fun to the days now when in fact life is filled with the routine of life.

So, in today-time, I'm fully here for my mother.  I visit every day. I don't push her aside for my next adventure.  But while I'm doing that, I'm also planning and hoping for my next adventure in life - a move, perhaps to South America.  Or Italy.  A new life. Retirement. A very very different life.

Am I less committed to my mother?  No, not at all.  I will be here for her until her end.  And if you've read earlier posts, you know that she is more eager for her own end than anyone else.  That makes me a little less guilty, perhaps.

But I'm still planning for ... after.  After.  After her death.  After her estate is settled.  After her apartment is cleared and I am not needed by her.  After.

I had an interesting exchange in another blog, Kickboxing In A Wonderbra, about this subject.  It's really not about running away from anything, but about running toward my next adventure, the next (risky, thrilling, challenging, frightening-but-rewarding) adventure.  A simplification of my life, a moving toward community and volunteer opportunities and a much much quieter life. Less insulated, less choked by layers and layers of possessions.  Like the delicious feeling the breeze on one's skin for the first time in springtime - more alive, more connected.

But since such a drastic change - the After - a move out of the country perhaps - requires a great deal of work, I admit to spending considerable time now preparing our house for sale. Getting rid of box after box of books, stuff, getting ready for a mega-garage-sale. Painting walls, upgrading faucets. Handing over family heirlooms and ancestry artifacts to the next generation.  Planning how to handle furniture and paintings and a lifetime of photographs.  Figuring out how to reduce our big, noisy, fully-stuffed life down to a few suitcases.  Walking away from the big footprint of our lives here. Walking away.

And it strongly occurs to me that I am greatly reducing the footprint of my own life, just as I observed about my mother's life as I began this blog three years ago.  Am I disappearing?  No, I am creating an essence of what is really important, and immersing myself in that.  Choosing the fullest life possible. 

Waiting for death - whose problem is that, anyway?

I like that title for this post, but I don't even know why.  I may change it, or, I'll discover why as I write.

After writing the last post, about Mom wanting to die even in the midst of loving family and laughs and warmth, I felt like I should write something about the efforts we have made to ensure she has a rich life.  I wanted to write about what we've done to help her want to live. A great assisted living facility with loads of activities and personal attention.  A number of nice folks up and down her hallway and at meals.  Frequent phone calls.  Daily visits. Books for the Blind.  On and on.  But she chooses to sit and flip TV channels and wait for death to come.  It's a source of great frustration to me and my sister.  We nag, we scold, we cajole, we make deals, we offer ideas.


And then it hit me.  This is not about me or my efforts.  This is about her and her life.  


This is NOT about me being a good-enough daughter.  It's NOT about my needing to create purpose or joy in my mother's life.

I only need to offer what I have available.  She accepts it, or not. But either way, she is responsible for her life, her own happiness and meaning. Her engagement - or lack of engagement and meaning.

My sister and I have talked about this a lot.  She is angry and frustrated, I am sad and frustrated.  She said she would like Mom to be more like a friend of hers who is a wonderful exemplary strong odler woman who remained interested in life and engaged and inspiring through very-old-age.  She wants more for Mom.  I also want more for Mom, but I tend to feel that she is doing all she can, probably, or at least all she is willing to do.  More accepting of 'as is' rather than what I'd wish for her (or wish for me, at that age).  My sister's eagerness to make Mom into more may be really good for Mom - or it may be just frustration on all sides.

And we can grieve that she is not that amazing woman that others turn to for inspiration. She is quite ordinary.  She's tired and wants to die.

Our reactions to this situation play out, to some extent, an old family story.  When I was about 7 or so, (and my sister a bit younger and my brother about 4 years older), my brother bought a little chick at the grocery store just before Easter, a gift to my mom.  (Yep, they did that back in the 1950's. Bad idea.)  The chick followed my mother everywhere, peeping constantly.  One day my family all went out for a few hours, and we put the chick in a box, and we put our puppy in another box.  When we came home, both boxes were upturned and all that remained of the chick was a foot and a feather.  The personalities of the 3 kids are what have played out to this day, to some extent.  My little sister was furious, I was crying, and my brother shrugged and complained about "Sixty nine cents down the drain".  And even now, we find ourselves in similar reactions - my sister's anger, my sadness and depression.

Frankly, I think I will approach old-old-age better, thanks to this experience with my Mom.  I intend to squeeze every bit of life out of the life I still have, right to the end.  I want to stay engaged, curious, purposeful.  I want to contribute to community and Life.  I don't want to die before I'm dead.

So Mom's waiting for death - whose problem is it?  It's hers.  I can help but I can't make her into someone else, not now, not ever. She is herself, and I am me. It's freeing.  I can breathe.  But I only need to breathe for myself.

Holding her breath until the reunion... then, exhaling and waiting for death

My mom had been eagerly awaiting a family reunion in November.  She turned 90 in September, and basked in the glow of attention and fussing over her.  In November, she helped everyone (19 in all) to get here and to spend time together.  She has been extremely focused on the reunion ... the reunion...  the reunion.  That's what we talked about for a couple of months.

And it went off GREAT.  All had a wonderful time.  Everyone fussed over her.  And it was blessedly short (just a long weekend), short enough that we didn't kill each other.  I was able to distribute some family artifacts that I'd been holding onto.  She distributed to her children and (adult) grandchildren some jewelry items but at a time when she could tell them directly the story of each one, rather than waiting until her death and people shrugging, not knowing what these things represented.  It was a great success.

And smack in the middle of a dinner together, where all were having a lot of laughs, she announces, "I just want to die".  OK, I'll be honest, she said that at least 10 times during the weekend.  Or, I just stopped counting at 10 times.  Yeah, that'll quiet a room.  And, to say that during a great family dinner is just ... odd.  Sure, maybe during a colonoscopy or over a dinner of liver and onions.  But, at a meal surrounded by your loved ones, and everyone having such a great time?  Sad.  She's just tired.

Then the morning came when the reunion was over.  Everyone had gone home.

And I am there with her, every day, back to just the two of us, and Groundhog Day resumes for each of us.  Tick tock. Waiting.

A new phase approaches

Deep sigh...

My mom is now completely incontinent, urinary-wise and with a measure of fecal incontinence.  Plus, she doesn't want to change her briefs when they become wet, due to a combination of laziness - by her own admission - as well as an aversion to 'wasting money' on briefs and unawareness of her own urination.  So she is at now at risk of needing a nursing home instead of her current assisted living arrangements (one bedroom, one living room with a kitchenette, private bathroom, nice lake view).

And, with her occasional low blood sugar issues, there are some safety concerns, both with any dangerous low blood sugars as well as any associated falls.  She is also on oxygen 100% of the time, 24x7, though she has resisted doing so, at least up until our conversation yesterday.

Yesterday I told her that the potential consequence of wet and overflowing briefs is ... moving to a nursing home. It was not a happy conversation.

Today I checked out nursing homes.  One was straight out of central casting of One Flew Over The Cuckoo's Nest.  Awful.  The other was clean and orderly, but with her sharing what is a very small hospital-room space.  I've toured yet another, a little further from me but associated with her present facility, and though she'd likely share a room, the place is clean and pleasant and comfortable.

So, as I consider the title of this blog, her life is soon contracting further, from a 3-room apartment to half of a hospital room.  Soon, with a poof, will she just vanish?  She is miserable, and wishes that to be sooner rather than later.  Poor disappearing mother.

Three-year anniversary

My mom has been in her assisted living facility for three years now, as of a couple of days ago.

Wow.  Honestly, when she first got there, I thought she would only live six months or a year, maybe two at most.  She was disoriented and suffered various health challenges.  Good care has extended her life for these three years, and though she is weakening and declining, she remains pretty sharp, even sharper (maybe) than 3 years ago.

Three years.  Surprising.

Clock-checking

Mom has a curious obsession with the time.  She is adamant that, every week or two, I MAKE SURE that each clock is set exactly correctly.  I have to look at my cell phone (which I assure her is set to the Atomic Clock), then look at each of her clocks to be sure they're still right.  She has an electric one, that is of course always correct, and a battery-powered one which I suppose could lose battery power.  And she has a mantle clock which does need occasional tweaking by a minute or so back or forward.

But ... why is the exact time so important?  She doesn't have an intensely scheduled day.  It's curious to me.

More Groundhog Days....

I keep on visiting.

Her toe hurts. Her toilet paper roll needs to be changed.  We chat about Evelyn's latest antics and forgetfulness.  I ask if Bob or Marilyn called, or if she's called Violet.

And we sit in some silence.

She does ask about me and my life at times, and I reply, but I need to be concise because she'll lose interest fairly quickly.  Her eyes glaze over a bit and she starts looking around.

She was very happy with the outcome of her 90th birthday.  She got some nice flowers and a stack of cards.  A few folks visited.  And the flowers are (most of them) still sitting on her desk, dead, but she wants them.  And the balloons in the mylar will stay up for about six months, and she'll leave them there I'm sure. Maybe I'll sneak a little air out each visit so she lets me clean them away.

She doesn't listen to the Books for the Blind tapes.  "Too much trouble" - though I've queued it up and all she has to do is lean slightly to her left and push the giant green button.  Too much trouble.

So she turns on TV and watches the Animal Planet or the Weather Channel or Dr Phil.  And waits for me to come visit so we can discuss her toe, or her toilet paper roll or Evelyn's antics.

Deja vu all over again.  Sigh.

An impossible request, and, not-enoughness

My mother said to me, "Nancy, I need MORE of you.  MORE."

I visit every day, usually for 45 minutes to an hour or more.  Occasionally I can 'only' visit for 15 minutes.

I said, "Mom, you can't have more of me.  I'm giving all I can.  But, out of curiosity, what would be the perfect amount, in your view, if I could give it?"  I was curious how much I was failing her idea of perfection.

She thought about it a moment.  "Three hours."  A day.  Three hours a day, she wants me to sit with her.  Hang out with her.  Be with her.  Attend to her.  Help her feel less lonely.  (Lonely, though she lives in a home with dozens of other lonely people.  Lonely but lazy by her own admission.)

"No, you can't have three hours.  I can't do it.  Mom, we run out of things to say after three minutes!"  She agreed that three hours was probably not reasonable, then in the next breath, she said she wanted it.

I pointed out that her repeatedly saying 3 hours really told me that whatever I was already giving is just not much in her book, that she doesn't really appreciate it and it's not enough.  Never enough.  Never never enough.

She told my sister (who lives out of town and is a great supporter of my efforts) about the request for three hours a day.  My sister said, Mom, when your father was alive, how much did you visit him?  When your mother-in-law lived just down the street, how much did you visit her?  (I probably visit her in a week more time that she gave her father in a year).  She responded, "well, now I'm embarassed."  She got the point ... then the next day when I arrived, she mentioned the three hours again within the first 15 seconds.

Impossible.

Ethics of allowing vs facilitating death at the end of one's life

I received an interesting email about a woman whose husband suffered terribly as he approached the end of his life, taken from a New York Times article.  In this article, the wife, still in good health and with great love and loyalty to her dying husband, struggled with the possibility of deactivating his pacemaker to allow death to occur.  A point came where death became much more merciful instead of allowing a machine to extend a miserable life. 

My mother has repeatedly, yes even insufferably, talked about her desire to die.  To have her life end.  

I believe she feels this way out of boredom, because she chooses to sit and wait to die rather than embracing her remaining days.  Vicious circle. 

I think if she really understood that her pacemaker keeps her alive and her heart beating evenly - somewhat against her will in recent months - she may even want to deactivate it. (Removal is not necessary since it can be deactivated permanently or even temporarily with a big magnet.)  

However - now I think about ethics questions.  In my own mind, whether she is right or wrong to want to die, the pacemaker is artificially extending her life.  The 'natural' state for her is to have a slowing heartbeat that eventually just stops.  So in some sense if death is acceptable or desirable, then deactivating a pacemaker may be a 'natural' way to allow death to come when it comes.  In visits with my sister she compares it to stopping taking one's medicine, and while I resisted that comparison at first, it probably does fit well. 

Doing so seems uncomfortable to us, the living, but is what I would want if my situation were as desperate and hopeless as described in the family in the New York Times article.  

Now the ethical quandary.  My mother is very much alive and although she is bored, she has potential to live, to learn, to help others, to be a part of others' lives. I repeatedly urge her to 'live every day she is alive', as readers of this blog well know.  Instead, it's Doctor Phil and waiting for Nancy. And endless same-ness of each day.  Groundhog Day at age 90.  I do all I can but cannot live life FOR her.  I cannot turn a life of self-absorbed boredom into one of delight.  I do make a difference for her daily in my visits of 20 minutes to 2 hours or more, but I cannot become the 'fun-ness' for her life.  

So, I ponder, is it unethical for her to contemplate such actions to speed the natural end of her life?  Is it unethical for me to describe to her the potential for her to take such an action, knowing that she may choose to take such a course even if I think it is a unnecessary (and possibly even immoral) waste of human life?  

For the most part, I am her support and am there to facilitate her wishes.  If her wishes are to speed death, then whether I would take that same decision or not, I tend to be willing to support her.  But I know I can filter information that she receives.  Where is the line drawn in controlling versus supporting?  

Another one bites the dust. Literally.

Another tooth broke off.  I think that's the fifth one in a year - maybe sixth.

She mentions it like her fingernail broke.  I looked at it and just groaned.  That chunk of tooth (actually, the gold crown with some tooth underneath) now sitting on her walker represents more appointments, more questions, more decisions.  What does one do for an 89-year-old hospice patient?  Of course, comfort is first.  But how much 'fixing' is the right amount?

She keeps saying, My mother didn't teach me to brush twice a day.  OK, Mom, I get that, but what about the seven decades since then?  Oh well.  Off we go to the dentist.  Again.

Old themes returning

Rewind.  Here we go again.

A few days ago, Mom said that she hoped that my husband and I took good care of our health (more about how she said that later in this post), so that we don't experience the terrible life that she is experiencing.

What?  Terrible life?  That came out of left field... though ... it really just is a replay of old poor-me comments.  Every time I think we've licked the self-pity and helped her get a positive attitude, she regresses.  Sigh.  Do I sound unsympathetic?  I'm not, not entirely anyway.  I'm ambivalent, really.  Yes, of course she is not enjoying this difficult phase of her life and that's sad, but on the other hand, she has chosen so much about where and who she is.  She has chosen to sit alone in her room, she has chosen to make Dr Phil as the high point of her day.  So, yes, I am mixed between sympathy and impatience.

I asked her why her life is so terrible.  She said it's because she has no friends.  She recalled back to before she moved here locally, as if that was some idyllic life filled with fabulous friendships.  So I asked her if she had friends in her previous senior housing complex - 'well, no not really, but I knew people'.  "Oh, kinda like here?" I replied.  Yes, she said, I guess so.  Then I asked if before Dad died, were there more friendships then?  Yes, that's it.  He was the outgoing one, and (in her words...) "I just went along for the ride".

Honestly, I feel rather sorry for her, though mixed with annoyance and impatience.  Her entire life she has 'gone along for the ride' with a more social husband.  (She has forgotten that although he was more outgoing, his rudeness also deeply offended many many people who refused to maintain a friendship. The rear-view-window is pretty rosy.)  But isn't that just too sad that someone has lived their entire life without the gift of knowing how to reach out to others?  of being so self-involved that she isn't interested in others' lives?  She commented about a woman very recently widowed that she must not be grieving much because she is already back eating in the common dining room! She is famous in her home for loudly making rude comments about others, and she is reaping what she has sown.

I told her that just outside her door are a small army of individuals who are also lonely.  All she has to do is just go knock and say hello, how are you doing today?  As she's done before, she agreed that she could do it and probably should.  And soon, this whole conversation will be repeated.  I give it a month at most.

Her way of telling me that my husband and I should take care of our health is to tell us that we each needed to lose 100 pounds, 'for her'.  Good grief.  Yes, both of us need to lose weight, but 100 pounds is insane.  Very very hurtful. I felt again like the crushed preteen that suffered cruel comments on my weight from my cold mother so many years ago.  The next day after our conversation, I went back and said how much it hurt me and to please know that, on the list of my motivators, she is way way down on the list, and to please never ever mention it again.  It's not her problem, it's not her business.  "Yes but..." was her response.

Rewind.  Replay.  Here we go again.

Steaks and corn on the cob and a great breeze

Yesterday, my husband was off work for Memorial Day and we decided to grill some steaks.  I debated inviting my mother - I knew she'd enjoy it but the logistics (transport, toileting) are a nightmare.  It would turn a potentially lovely relaxing evening to ... something else entirely.

I invited her.  Oh lordie I'm a good girl!  (oh, what's that noise you ask?  the sound of me patting myself on the back... grin...)  Also invited our kids and grandkids at the last minute - a family day. 

So I make the run to her assisted living facility, pack her up with her essentials (water, sunglasses and a clean Depends; I convince her not to bring a banana since we are not going to a third world country but just to my house).  We get back to the house and I muster up my courage and wheel her through the grass, down the hill, through the gate, around more hillside, until we finally get to the back of the house and onto the brick patio.  Though this sounds perilous (OK, OK, I admit she almost dumped out a time or two), it's better than the three steps up into the house and the six steps down to the walkout apartment which leads to the patio.)

But, she had a GREAT time.  She just sat there, enjoying the breeze, asking about the bushes and vines.  Listening to birds.  Eating steaks with luscious corn on the cob and salad.  It was a perfect day - warm in the sun, pleasant in the shade.

The kids came over, and she (kinda) listened as the girls talked about school and this and that.  My daughter in law asked about her life - what was the highlight of her life.  She answered, much to my surprise, "My kids".  That may be some elder-editorializing since I'm not sure that would have been her answer earlier in her life, but it's nice to think that, upon reflection, that is what mattered most.  Really nice.

When I brought her home, as we opened her apartment door, she gasped happily, "Oh, I'm HOME!".  She enjoyed her day but that apartment is her safe zone, her refuge.  She had a wonderful time going to our house - and coming home.  A good day, and some nice memories for us all.

Dream of death

Yesterday, Mom called and said she had a disturbing dream, of her own death.

What was interesting to me is that the part that was so very upsetting to her is the fact that, in her dream, they were trying to resuscitate her in spite of her having a DNR (Do Not Resuscitate) order in her purse.  She kept trying to tell them about her DNR and they didn't believe her. And then she was concerned that her pacemaker would keep her 'alive' against her wishes.

She's really ready to die.  She is weaker each day, napping after breakfast, after lunch, and going early to bed.  She's quite coherent, alert, interactive ... just tired of all this.

More from book Another Country by Mary Pipher

I have this amazing book about understanding the older generation.  I've mentioned it before here  - my sister loaned it to me and I've been reading it in spurts.  It has been a real boon to me, to understand both my own mother better and to help me manage my own reaction to her and her needs.  It also helps me understand the aging process so that I can avoid some problems.

The book talks about the 'young-old' vs 'old-old'.  Often the difference is one's health - the 'old-old' have health issues make it more difficult to live well.  In fact, this has inspired me and my husband to make some improvements in our own health. I'm almost 60, he's almost 65, and our progress so far is slow but sure.

Here are some blurbs that grabbed me, from Chapter 5.  I'm sharing them, not as complete thoughts, but as teasers.  Such as:

• 'The old-old die by inches'. 
• Caregivers alternate between guilt and rage. 
• Baggage from past affects relationships as parents age. Clashing needs.
• Caretakers live with fear about making wrong decision in life/death matters, especially when factors influencing the decision are so nebulous. 
• 'I'm guilty wherever I am' syndrome. (If I'm with my mother, I'm guilty I'm not doing other needed things, and vice versa.)
• Delicately balanced relationships can topple under the weight of caring for elders. (I started noting page numbers - this was p134)
• Crises with eldercare make everyone more who they really are, removing the filters and faux fronts. (p134)
• 'I love my father but I don't like him.' (p135)
• We may see ourselves as children - scared vulnerable.  (p137)
• Unpleasant memories don't disappear just because a parent is ill and dependent.  (p139)
• p149
• Yeats quote:  "Growing old is like being tied to a dying animal." (p164)
• Disaster stories tell us what humans do when they are shoved hard against the wall.  Old age is our own personal disaster story, our own worst-case scenario.  Each of us will experience our ship going down; we'll experience being lost and alone and far from home.  (p188)

There's loads more good reading the book, but those are a few that I made a note of.  I am eager to finish what's left of the book. I so highly recommend it.    

Change, routine and an adventure

Honestly, there is not much to mention, but I'll enter an update anyway.

My mother's hospice nurse died quite suddenly.  She had a fall, then didn't improve and after a body scan of some type, they found cancer "everywhere".  She died within a week or so.  Shocking.  A realization of how quickly one's death can come.  We liked Margaret a lot - she was a little rough in her voice and manner but really funny and likable.

My mother's health itself remains mostly static, though the new nurse told me that her congestive heart failure (CHF) is advancing.  There is some way of scoring it based on the size of the heart - it used to be in the 170s and now is in the 280s (or, it used to be in the 200s and now is in the 300s?).  Anyway, a decline. She seems the same mostly, just more tired.  The new nurse Connie said that in cases like this, she could go on for a time, or, could just not wake up one morning.  She's not feeling a need for oxygen, though, so it may not be too awfully bad.  Connie said that when her appetite decreases, it may be that the body's need for oxygen may prioritize the heart and brain and reduce available resources for digestion, hence a lack of appetite.  But, so far Mom is eating well so we'll just watch for that.

And my brother visited last weekend.  His granddaughter had a soccer game, and Bob invited Mom to go.  She said no, she didn't feel like it.  I got on the phone and shamed her into it - how much her great-granddaughter would like to see both her and her own grandfather watch her play.  That if she didn't go, Bob wasn't going to go, thus a double-loss. Finally she relented - and had a wonderful time.  She brought stacks of covers to keep her warm, and Bob had to help her in the bathroom, but she made it - and loved it!  She was glowing.

Other than that, routine prevails.  Almost-daily visits.  Change the toilet paper roll, buy orange juice.  Look for this or that.  Clip fingernails. Asking about her neighbors there. Clean the sink.  Just spend some time together, gazing and holding hands.

word of the day

My mother handed me a list of words, written on flowery paper in her shaky, weak handwriting:

• Chapultepec
• bituminous coal
• ozone
• Weimerauner (on the list twice), and related (in her mind), Lippizaner
• metatarsal
• sanctions 

She said she has started to wake up with a word on her mind. She has been writing it down, and asked me to research and print a bit about each.  We talked about the meanings briefly, but she would like a bit of research.

I'm heartened by this interesting request. It shows curiosity and interest in learning.

On the same visit as this request, though, she said she doesn't think 'it' will be much longer (before death). She is happy about that, or at least, content. But then in the next breath she said she hasn't needed the oxygen so much so maybe she's doing OK.  Though it can be disturbing to talk with her with such ease about her impending death, it must be a relief for her to be able to talk about it comfortably.  I allow her to dwell on it as much as she seems to want to talk about it, then we move on.

My vacation - I survived! She is surviving!

My husband and I decided to take a longish car trip from Kansas City to Southern California to visit and back, but with time on both ends for some touring.  On the way out (to visit friends in the mountains), the plan was to stop to see my brother, and on the way back to do some touring in Arizona, Utah and California. 

The first night, in a tiny town in the middle of Kansas, I had an 'event' that could have been a heart problem, or a medication interaction ... but I passed out in the bathroom, breaking a tooth and waking up on the cold tiles.  We went to the emergency room of a VERY small hospital.  They ended up releasing me, warning me to stop immediately in an emergency room if I experienced further symptoms.  (Have they seen the route between Kingman Kansas and Albuquerque?  I suspect most towns make do with no more than a veterinarian.)  While I could milk that story ad infinitum, I'll move on. 

As I sat in the emergency room receiving care, I found the tables turned. different from my attending to my mother's needs with her sometimes-frequent trips there. I wasn't crazy about being the one with the gown. 

I have spent the vacation, since that Night One, worrying whether I should have turned around to be fully examined.  Each time I've gotten short of breath, I wondered. Each twinge, I wondered.  (I've been fine, and have an appointment immediately upon my return.) 

Mom has been fine, no really, she has been surprisingly positive.  (She bounced right back after my last blog post, and though still fragile, she is as she was before the pain patch made her unstable and sick.)  I have called almost daily (when I had signal), and she has a list of people to call if she gets lonely.  I helped her line up a massage (!  Her first!), and she signed up for another while I'm gone.  She misses me, but her attitude has been great. 

I decided not to tell my mother about my fall and hospital visit until I get back, and to share it as one of many stories from my trip.  I am still a couple of days away from a return, and am figuratively holding my breath.  

Pain, oxygen and a decline

Deep breath.

Mom was walking (with her walker) back from a meal a few days ago when she became quite short of breath, and remained that way for a time.  She called for help using her ever-present button, and the staff called the hospice nurse, who said to help her use the oxygen machine that had been sitting in the corner since she started hospice.  The episode resolved, she went back to normal, and she has had staff take her to meals in her wheelchair to meals to prevent a recurrence of the shortness of breath.

Hospice sent portable tanks and tubing to be available, in addition to the big machine.  Mom started stressing about needing to have oxygen ever-present, asking help from the assisted living aides.  (I think it was a little bit of a thrill to have a new addition to her routine.) Asking for help led to (unfortunately), the unit manager raising red flags immediately about such routine oxygen support not being included in the level of care, that Mom may have to move.  This of course was upsetting to Mom.  Sigh.

We determined that, while she may need oxygen occasionally, she does not have to be 'on' oxygen 24x7 at all - at least not now.

Next she heard from a table-mate that a 'pain patch' is a great way to control pain, which has been increasing with arthritis and back pain (due to both slumping and falls).  So I brought her to the doctor to talk about pain management and a pain patch.  She tried it, and in less than 24 hours, she fell this morninig due to dizziness, and then at noon, she threw up.  The patch is off, and we're back to her just having to ask for pills.

I was with her when she threw up, and so I took her back to her room, made her bed, helped her change her clothes, and helped her into bed.  It was so sad, how frail she was. Her confusion - she called me by the wrong name, said silly nonsensical things (kind of an elderly game of Word Association).  How desperate and afraid. She is tired of this. She hurts most of the time and the effort to go through daily life is overwhelming.  She cannot easily get about without aid.  She often cannot manage toileting successfully.  She requires help showering.  Her life is shrinking even more.

As I left her today, in bed to rest, I again realized that it is not unthinkable that she may die before I see her next.  I suspect that is not the case, that her frailness is more due to the residual effect of the pain patch medicine that didn't sit well with her.  But one day, probably soon, will be her last.  And what a relief for all.  Poor thing.

Glass half-full

I took my mother to her hometown, Topeka, Kansas, last Saturday - about 1.5 hour drive.  We visited her best friend from childhood, Mayme, who is still living there.  They delight to see each other, and laugh over their history, talk about names and stories from long ago.  Plus, Mayme tells me things like the fact that my mother was always late as a young woman - a fact that delights me when I am (too often) late arriving at my impatient mother's home.

I adore Mayme. I admire Mayme.  I enjoy Mayme.

This visit, my mother was in a wheelchair.  Mayme has difficulty with her knees, but gets around slowly without even a cane.  Mayme still lives in the same house as she has since I was a child and our families visited and we played in the park across the street.  We lunched, drove around the old neighborhood, and visited Mayme's husband.

Mayme's husband had a stroke some time ago, and is now in full-time nursing care, beginning to experience dementia as well.  Mayme visits him every single day, though she has no car.  She has a taxi come for her each afternoon, and gets home the same way after her husband goes to sleep. During her time there, she fixes his bed 'just right' after the aides get him into his wheelchair for a few hours.  She fusses with him, talks to him, or just reads.  She said that when she goes home each evening and reads some more, she can feel his presence in 'his chair' on the other side of the fireplace.

But - Mayme always has a positive attitude.  Always. She finds it. She fights for it.

She is grateful.

She giggles.

She is eager to see what's next, what's new, what's interesting.  She is curious.

Though she is 89, with many many challenges, yet she finds joy in each day. And, I believe, she will continue thus for some time.  Her glass will always be half-full - at least.

Boredom... inevitably part of end-of-life? Oh, I hope not!!!

I've continued to think about the previous post, "Dying of Boredom". I've wondered - is this just a natural (and even a helpful) part of the end of life? A willingness to just... let go? But I don't think it necessarily is that way, as I described previously. The people in a group home are a subset of elderly folks. There are others who are not in such a place will have a different situation. Surely some elderly ones out there are sitting in their own homes (or in their family's home) watching TV, utterly bored. But others may be caring for grandchildren, reading, going to lunch, cooking, gardening, volunteering. Engaged. Challenged. Interested in what's NEXT in life...


It makes me think of a book that my sister loaned me, Another Country, Mary Pipher, PhD (see Amazon, Another Country: Navigating the Emotional Terrain of Our Elders). It talks about the 'young-old' and the 'old-old'. In many cases, health difficulties may turn someone into an 'old-old' person, which may make it virtually inevitable to lose interest in life around oneself. But this book describes magnificently the differences between my mother's generation and my own baby-boomer generation. It is very helpful to provide insight into why an elder may be as they are. I recommend the book highly.


So, my own goal as I face turning 60 later this year? Stay among the 'young-old'. Improve my health. Be engaged. Be interested in what's next. I've moved over to a Spanish congregation and am mentoring and helping there with their challenges. I read, do puzzles, and am very very engaged in my community. (And my sister and I have a mutual pact to beat the other with a baseball bat if we get bored with life.)
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Dying of boredom?

My mother received a visit from her hospice workers.  They were running some tests, and while they were prepping her, she chatted about hospice.  She told them that another man at her home is also using hospice services, and has been doing so for some time.  She said that the two of them often joke about which one will 'go' first - they call out to one another as they pass in the hallways, "Are you still around?".  The workers laughed nervously.. she has a rather dark sense of humor.

But I really think a big part of their attitude is just boredom.

I wonder if they are just 'done' doing things.  Or having goals.  Bringing meaning to life, to themselves, to others.  Maybe they ran out of 'life' before they actually died.

There are many many activities at her assisted living center.  For my mother, I visit daily. I urge her to go talk to others to cheer them up and help them feel connected.  She does talk a walk once daily down the halls to watch some gentlemen play pool - which is great. But she chooses to sit and watch TV for the rest of her waking hours.

Yesterday during our visit we picked up her crossword book - formerly a passion - and did parts of a couple puzzles together.  She enjoyed it ... but just for a bit, then she just set it aside, bored.

Marking time until she dies.
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Tiny helps mean so much

Today I visited Mom and did a few small things... wound her clock, unpacked some supplies from hospice.  Filled her water glass. Adjusted her chair.  Nothing much - just itty bitty things that are hard for her now.

She was so grateful.  I was glad I can do it.

But it strikes me how tiny her world has become, that such small things can brighten her world.

An anniversary for me

Two years ago today (Mar 14 2008) was my last day in my corporate job.  I took a voluntary layoff to give me time to support my mother as well as to enlarge my time with my volunteer work and to escape frustrations of corporate life.

What a change.  I can't believe it's been two years.  Feels like six months, maybe a year.  But I haven't missed the 11:30 PM texts from my boss or long hours or stress.  And it's been nice to have a schedule that allows me to visit mom, as well as to live a life more in synch with my personal values and passions.

And while my income has been cut to about 20% - 25% of what it was before, the enjoyment of my life has been so much richer.  More meaningful.  I miss the financial security, but that can't possibly buy my life now.  Not by a long shot.

My mother had moved to her assisted living facility nearby about six months before I was laid off, so that means she has been here 2 1/2 years.  Wow.  I honestly thought she could only survive three, maybe six months at the time, due to her confusion and frailness.  She has stabilized - gotten much worse in some ways, gotten more stable in others - and my own awareness of how much someone can endure has deepened.

My support of her has gotten easier now in many ways, compared to that first year.  The many tasks associated with 'taking over' her life have dissipated - the facility orders and administers her medicines, hospice helps with many medical needs and supplies.  The business matters have reduced greatly - just a few bills to pay monthly, a monthly fax to insurer, occasional visits with financial guy, doing her taxes each year. Now it's the small daily things - pick up a bulb for the night light and yogurt, put on her toilet paper roll the way she likes.  Doctor's visits. And I'll admit there is some filing and some things that are yet to do.  But honestly, looking back two years at the blog, I can see the improvement in my situation - now. It's been a long haul but, yes, it gets better.

Doctors as entertainment

I swear, sometimes I think Mom thinks of medical complaints just to have something to do, someone to fuss over her.  

"I can't see TV.  I need to go to the eye doctor.".  And then I learn that it is actually on her new TV, she can't see the (now) much smaller text showing the channel she is on when she changes channels.  And she has had macular degeneration for years - while I'm sympathetic to how frustrating it must be, a doctor's visit can't give her 30-year-old's vision.  We did go to the doctor, she did have a slight change in lenses... but she has the same complaint.  

Over the last months she has had three teeth pulled because they broke off.  Recently she said she needed to go to the dentist.  I asked, why?  She said she didn't know - but don't we need to go?  No, you are good for now.  You have a routine appointment in a few months.  

A couple of weeks after hospice started, one day she was furious because she said she wasn't getting enough attention.  (When hospice services started, she had a series of 'get to know you' visits, so suddenly she felt 'bereft' to use her word.)  I asked what she needed ... 'oh, nothing, but I just am not getting enough attention!'.  I reminded her that many hospice clients are gravely ill with urgent, life-sustaining medical needs, and that she is really alright and is getting all the attention that hospice committed to her. 

It's not that I have a problem with helping her with real needs, or even with perceived needs (though keeping up with those needs does become challenging at times).  But there is a boredom in her voice, a restlessness that she wants a doctor's visit to solve.  

And then my own guilt - am I not doing enough to entertain her?  I already visit almost daily - more than anyone else in her assisted living community.  Oh well, brush it off.  She's just tired and lonely.  And it's each person's responsibility to find their own joy.  We chose that facility because of the abundance of activities offered and the sense of community.  If she chooses to sit in her room with her TV, it's not my responsibility to fix - nor is it an indicator for a doctor's visit. 

End-of-life wishes

Some time ago, perhaps six months ago, my mother and I had a frank conversation about what she wanted for the end of her life.  How did she want it to play out?  She had carried in her purse an aged and tattered thing that she called a "living will" but which really was mostly about her funeral.  She needed a living will, and we needed to talk.


I was prompted by hearing an NPR radio program about the very low rate of a successful outcome if someone is defibrillated. (I wish I could find the NPR article to share...).  TV shows use defibrillators with great frequency, and the person virtually stands up and walks away at times.  In fact, as I recall the rate at which people actually leave the hospital and return to their previous level of health is something like 4%.


Wow.  And even less likely of success on an 89-year-old patient with heart disease and diabetes.


I sat down with my mother and talked about the study, and asked her what she wanted.  She said she didn't want any 'heroic measures' - she repeated that phrase.  She said she was ready to die.


But what does that mean?  And how do we ... make it happen? or rather, make sure that certain unwanted things do not happen?


We went to her physician.  He listened, and asked some great questions.  What about all the pills she's taking - does she want to stop taking the medicines to help her diabetes, blood pressure, atrial fibrillation, and on and on?  No, she said she is not ready to throw away her pills to hasten her death.  On the other end of that spectrum, does she want every and all measures to forestall death? Nope.


So, in between those extremes are many other questions.  What if she is having chest pain.  Although she doesn't want 'heroic measures', what about pain medicines?  After a number of clarifying questions, we are now clear that she would like to have 'comfort measures' but no measures purely to extend life.


So she filled out and signed the Living Will documents (provided by our local hospital) and I distributed it to all her pertinent doctors and put copies in her purse, my purse, and gave to her assisted living center.   But in addition, I recorded her talking about her wishes in my cell phone camera. If needed, I will play it for her doctors if anyone needs help understanding.


And of course, she has every right to change her mind right up until the end.


Now every time we consider a new health challenge - congestive heart failure all the way to new glasses.  I need to ask myself and her - is this consistent with decisions she has made? We talk about it each time. Do we choose to go to the doctor for this or that new symptom?  Is this comfort-enhancing vs life-extending?


By the way, I found a great piece on the subject when looking for the NPR story that started this journey, called What To Do The Next Time Dad's Heart Stops, by Richard Knox, at http://www.npr.org/templates/story/story.php?storyId=105593750.  Still can't find that other piece but I'll keep looking. 

So, I will sit with her when death comes.  Hold her hand.  Let her feel not so alone.  Make sure she has the death she wants.  

Negatives and positives ... both are so very real...

I'm having quite an internal reaction to my last post (where I describe why caring for aging parents can be so fraught with negative emotions, and why it's not really comparable to caring for children).

My reaction is partly embarrassment at having said it so directly.  But, I am also reacting because it doesn't tell the whole story.  I need to shine a light against that darkness.

I'm sure there are many whose distaste for their imperfect elders makes them do the minimum possible to help their parents, or to support them with thinly veiled resentment, or who abandon them altogether.  We even read of elder abuse, those who have victimized their parents physically.  Horrible.  Horrible.

On the other extreme, there are those who have a wonderful tender relationship with their parents, and who treasure every moment even if it is cleaning up a messy bathroom. I congratulate these blessed folks.

But where there is some degree of difficulty or even distaste for caring for elderly parents, is that the only thing that we see? That I see?

I started this journey without knowing.  Without knowing that there are such nice things I get out of it, like learning how to sit quietly. How to be OK with not having anything interesting to say. Finding out that there ARE little moments of laughter and silliness.  My mother has more of a wit than many of her contemporaries and it's fun to see aides or others enjoying her humor (usually, unless the barbs are too sharp).

This time has also allowed me to have a loving relationship with my mother, against whom I have held considerable anger (not unfairly) for many years.  We got to refresh, to reboot, even to restart.  And I'm so glad and grateful to have had this time.

I have been able to glimpse into Elder-World, and make decisions about how I want my old age to be.  I am determined to retain rich friendships and stay intellectually active.  I want to be fully alive and contribute to others until my dying day.

I think other posts have talked about other positives.  I just wanted to put that other darker post behind me.  Shudder.  That wasn't all there is, and I needed to say it.  There is also laughter, joy, purpose and even fun.  I'm grateful for this time, even with its difficulties.  I'm grateful.
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Why do many of us adult children feel (mostly) negative about caring for elderly parents?

Is that just the dumbest question? Is it (presumably) so painfully obvious?  Or is there more to it?  (And, if you don't have negative reaction to caring for your elderly parent, then I truly congratulate you.)

Is it fair, is it equivalent, to compare our parents' care for us when we were children with our caring for them as elderly parents?  Is it the same?  Are we merely 'giving back', tit for tat?

In the sense of familial duty, yes of course it is comparable.  They gave us life.  We owe them respect, dignity, honor.  Absolutely.  It is the right thing to do.

At the same time, we may have feelings about performing that duty that feel ... uncomfortable. I've talked about those feelings (resentful, impatient, frustrated). We are not proud of feeling this way, but it does REALLY feel quite different, my caring for my mother versus raising my daughter.

Why?

My sister's friend shared the essence of a newspaper article on the subject of caring for aging parents.  The article said the difference between caring for elderly parents versus children is that no matter how well we take care of elderly parents, they keep getting worse, unlike with children who grow up and become independent.

Maybe. Maybe that's part of it, anyway.  But I really think there's more to it.

Children bring hope, laughter, and the future.  Children allow us to dream. They touch a part of us that remembers our own youthful days.  They are innocent, clean slates. They are forever.

Parents... they bring (to most of us anyway) baggage of past failures - theirs, ours. When we walked away from home some years ago, we set aside unresolved issues - until now.  And now they are sick, needy.  Confused. They have awful smells and physical needs - needs that will only grow. They are confused and irritating when their own frustration or demands or moodiness hit us in the face when we are least prepared for it.

Children are fresh, new and hope-full.  Aged parents are damaged, pained, and used-up. 

Plus, the demands of an aging parent coincide with a time in our own adult lives when we are trying to finish some of our own accomplishments, help our own adult children, strengthen our own marriages, meet our own various needs in the last phase of our career before we retire. We're tired.

Further, as we look at elderly needy sick parents, we see ourselves in just a short 25-30 years to come. Who will bring us flowers, toilet paper, wine, toothpaste, Advil?  Who will hold our hands at the doctor's office?  Who will care if we live 'well' - or, if we live at all?  Can we afford our future? Will anyone even notice our existence?  Seeing our parents can be frightening, terribly uncomfortable.

As I'd mentioned before (and as others have secretly echoed) we adult children have horrible thoughts that we know they will die soon and that we actually hope for it to be sooner rather than later.  And the guilt and shame of that reality is just awful.

Honestly, my mother feels the same way, and says she is ready to die.  Waiting to die.  Maybe even yearning for death.  I'm aware of no particular purpose she serves except to boost Dr Phil's ratings by one viewer a day. She and I have nothing new to say to each other. There is no meaning to life that she is somehow holding back from sharing with us. She's marking time, waiting.

Of course, there are some nice moments we enjoy together, and I really work toward supporting her in a positive joyful way. But overall, there is the waiting, and secretly hoping, for the end. But still, it sounds like an awful thing to say, that I am looking forward to ending this.

So, there are some superficial comparisons that can be made between aging parents and young children.  But the real differences are complex and layered and uncomfortable and so very sad.
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About the title of the blog, "As my mother slowly disappears"

"As my mother slowly disappears."  Have I explained that title?

I have been struck at the changes in the size of the footprint of my mother's life.  She, as do all of us, had a big footprint in her adult life.  Owned a house. Cars.  Travel for pleasure, travel for family.  A job. Influence in her community. Children. Grandchildren. Edited some community newsletters. Hosted dinners.  Attended Elderhostel.  Was active, engaged.

And over the last 20 years, her footprint has been diminishing.

Her husband died.  Whoosh, in a heartbeat, her life footprint diminished by half.

After a bit, the house then went. Sold.  The possessions in the house gone, as my sister and I and my niece (representing our absent brother) pawed through boxes and piles.  At first, we were happy to have this or that thing; toward the end, whoever simply let their gaze linger too long on an item was 'stuck' with it, as we tried to avoid enlarging our own piles.  But the Stuff had to go...

... to get her into an apartment.  She stayed there for maybe 5 years.  They provided her dinner meal; she only prepared breakfast and lunch in her tiny kitchenette.  Visits from family sleeping on the sofabed. Until fires in her kitchen and other health risks meant she could no longer live there.

More sorting through the remains of a lifetime. More reducing her footprint. More passing along to family.

Next, she moved into Assisted Living.  Two rooms. They provide three meals. Housekeeping.  And during the last years, she has added services including administering her medicines, giving her showers, helping her get around. Hospice even helps her urinate (with a catheter).

Her life is sitting in her red chair, watching TV and waiting for Dr Phil. And for me.  And waiting to die.  To disappear.  Poof, and she's gone.

Then us kids come in, sort through whatever remains, and then she exists only in memories and photos.  She takes up no space at all.

Disappeared. Gone.

I kinda like those old folks

I must say that I rather enjoy being around the old folks in mom's assisted living center.  A few are just too far inside to reach, but most are reachable in some way.  It's kinda cute to see the parade of folks with walkers, trying to make fun 'crashing' into each other, talking about putting on their blinkers as they pass on the left, etc.  There's Dean and Bob and Lois and Margaret; Evelyn, Betty and some nameless ones.  Elegant and outspoken Mildred and her feisty friend Geraldine.

I always try to speak to each one, whether they respond or not; most do.  I have a bright smile and they seem happy to see me.  I want to show personal friendly interest in each one - I think it helps my mom, too, when she is rude or abrupt.  Maybe they'll be more forgiving of her attitudes if they remember her daughter is nice to them.

When I've come in to teach a genealogy event, we get few attendees but they are eager to talk about what they've done and where they've been.  It's been nice to hear their stories, though sad to know that their own families may not care much.

I've overheard them talk about me (there are no secrets in nursing care as too-loud voices carry), and they say nice things that make me feel good. It's an easy crowd to please - an ego-boost!

There's something about really looking into their eyes, with a smile and a greeting and sometimes a conversation.  I used to be like most, looking beyond them, a little nervously, a bit uncomfortable.  But now I'm enjoying my little visits with 'the ladies' and the men there.  

Opening up...

So, I've kept this blog as my own secret place to talk to the void.  No one has known about it, not my sister, not my husband.  Just me.

And it's time to share with my sister.  Welcome Marilyn!  And, if Marilyn wants to share it, welcome, oh friends and family of Marilyn.

I wonder if I will write more or less or differently if I now feel like I have an audience?  I don't know if it's good or bad - just different.

I've found another blog I really like:  http://midlifemidcape.wordpress.com/.  A man writes about his caring for his father in his home.  Of course, that's different than my situation, but I have enjoyed reading it.

And I wonder if I might do a blog (a public, visible, public-service kind of thing, like for MONEY) about elder care.  Lots of us baby-boomers that may embrace some help.  Or maybe not.  Right now all this feels pretty ... close.

And marilyn and friends, I apologize for any unguarded comments or any blathering on or looooooonnnnnngggggg posts.  And Marilyn, let me know if there's anything I need to edit out.  When one is writing to the void, one speaks frankly.

I love you, Marilyn.  You are loyal and loving and supportive.  Even if you can't be here to lend a hand with daily stuff, your words bolster and comfort and balance me.  THANK YOU.  I love you.

Honestly - how do I feel about all this?

I had an interesting chat session (AIM) with my sister Marilyn (oh I really love and appreciate her support).  (I have never told her about this blog, and I think it's time.)  And, the chat session brought up something I haven't dealt with so much here ...

How do I FEEL about this whole Mom thing?  About ... Mom?

I've written here in my secret blog about the frustrations of all ... this.  About being overwhelmed with tasks.  About resenting my mother's self-absorption. About just practical details of being an elder's 'person'.

But how do I feel about ... my mother?  About my life?

Honestly, I can't wait until she dies.  Is that shameful thing to say?  Well, there it is.

I want my mother to die.  To stop being so needy.  So craving of my presence.  Just to die.

I'm tired.  I'm done.  (sadly, no, I'm not done.  not yet)

Further, being really honest, we were never close.  She wasn't ... nurturing.  She has always been self-absorbed. Her own mother wrote in a diary that if she (my grandmother) was in some crisis, she (my mother) would finish her bridge game before she came. My childhood as I recall it was filled with my father's anger, my own fear and silence, with my father's rigid obsession with being perfect. I feared him and she never really was much of a presence.  I'm only glad he is already dead, and there is not a single day that I mourned him.  Or even thought about him or regretted his being gone.

I left home 3 days after graduating high school.  At 17 years old.  Moved to NYC.  Never looked back. My sister stayed another two years, and has been a loyal support to my parents for all these years. Marilyn has been there doing the routine boring support things for decades.

Now it's my turn to pitch in, and I'm doing it.  I'm doing it. 

And after I left home at 17 I found friends and nurturing and recovered from devastations I suffered previously.  And, I am really REALLY good now.  Many years of therapy, three (four?) hospitalizations and decades of great friends and a spirituality that has brought me tremendous joy and peace and... context.

But let's be really honest.  This is not a case of a grateful daughter giving back to a wonderful, nurturing mother.  This is a case of a woman choosing to take this on.

I hope this doesn't come across as my being some kind of a martyr.  I'm not.  Really. It's just my turn.

And, from a selfish point of view, I wanted the opportunity to develop a side of myself that I hadn't stretched as much. I had protected myself for years from having much direct contact with my parents ... by design.  And now it was just a good time for me to develop that side of me.  A giving-in-spite-of-everything-else side.  I have become strong, and I have learned how to say No, absolutely NOT, I learned how to feel like I was SAFE, now it was a time to CHOOSE to say Yes - not of duty (lack of choice) but of pure choice. Because I was ready. (I wonder if this makes sense.)

and if I'm going to do this, I want to do this with joy.  I choose joy. I want to find the positive side of it.  If I'm going to spend "x" amount of time, I may as well do it with gusto. With full awareness.  Without reservation (to the extent possible - honestly this all sounds a little.... much).   But I am really working at it, trying to stay in each moment, not resent the incursions in my life, in my schedule. To release 'outside' stuff when I walk into her building. Try to remember that old folks just want to gaze into the eyes of a loved one.  Time, gazing. Like infants.  And trying not to fidget remembering the things that I really wish I was doing.  Not to be coiled, ready to spring out the door when my time is up. Just allow myself to be in that moment. The joy of a Wendy's Frosty.  Of grapes. Of warm feet.  Of a good BM.

(and I do NOT remind her - as I sometimes wish to do - that she was a crappy daughter to her desperately lonely father, seeing him maybe once a year until he died in a urine-smelly nursing home). 

And I can be honestly say I've had moments when I've truly enjoyed some moments.  I've been surprised to reflect, "wow, I am really enjoying this moment, this laugh, with her".

She is grateful. At least once a week she remarks how amazingly lucky she is to have me.  She says "I couldn't have done this without you."  and that means a lot to me.

And yes, I am also very very aware that this is an enormous honor, a very intimate thing, to be called on by another human to be their 'person' as they face death.  Whether I was working for a complete stranger as a volunteer in hospice or doing this for my mother... it is something so very ... intimate.  Talking to someone about how they want their death to happen.  To be that person that someone else relies upon to ensure a death that doesn't offend or violate them.  Intimate.

But oh. lordie, I wish it would happen soon.  Her death.  And, I know from our conversations that she wants that too.

And, I am sad that when others look at us, they assume a wonderful history that has preceded this last era of her life.  I am sad, I grieve that we didn't have that, that she didn't give that, that I didn't get it.  I am not defective.  Our relationship was defective, and it is not my fault.

But I am just doing what I now choose to do, to be her 'person',  Until she dies.  Every new disease, new symptom, every fall she has, every weak episode, I wonder, is this time?  Is this her last winter?  Her last weekend? Her last Wendy's Frosty?  Will I get that call from her caregivers, "You need to come".  When will she die?

I hope soon.  Honestly.

Tedium, and, doctor visits

Life with/near my mother is either crushingly exhausting or simply boring, tedious.

We had a little burst of doctor's appointments last week - eye doctor and her primary care doc.  Her legs were terribly swollen (congestive heart failure, CHF), and couldn't pee, and trouble hearing.  Doc suggested going to cardiologist for her heart, but I reminded him we're on hospice and... if there's nothing to really create a real fix, and no pain to fix, then why go? So, we won't go.

Mostly now, it's tedious punctuated by bursts of drama.  Ho hum then some urgent care for congestive heart failure, then back to tedium.

We have little to say, but just sit together.  I try to come up with something interesting, but even that is unnecessary... she just wants human presence.

Another fall

She has fallen again, on Dec 31 in the evening. This time she was in front of her closet trying to rearrange some clothes.  She fell backward and hit her head.

Last time this happened, CLV called the paramedics and after they assessed her, she refused to go to the hospital.  I spoke to her, and she was coherent and seemed OK.  So, this time CLV didn't call paramedics (per mom's instructions). They called me and called Hospice. Hospice folks came out and assessed her and she was OK.

Over the last few days she has said she felt really really weak.  One day she said she had chest pains.  Yesterday I went to see her and she had been lying on her bed trying to get her pants on (she couldn't pull them up when she was standing); she got one leg in then couldn't manage the other.  She rang her button but no one came for 20 minutes as she lay there cold and frustrated.  She is just weak.

I still visit almost every day. We have little to say but it comforts her.