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.