Pre-PSP memories

Mom, Christmas in Florida, 2008

One week past Mom's death.  Among the sorrow there is release; there is peacefulness, knowing that she is no longer suffering; and yes, relief that I don't have to endure the agony of seeing her stiff and silent, enduring diapers, pureed Salisbury steak and the endless bingo at the home.

Mom, Christmas 2009

Now that this image isn't there every day, I'm also remembering Mom as she used to be before she got the disease. This brings fresh sorrow, because instead of relief I feel the enormity of loss.  She was so caring; so joyful; so dynamic.

Mom in May, 2011

What makes PSP so tough is that we're forced to see our loved ones in altered states for so damned long.  First there were the mood changes; then the inappropriate behavior; then the dementia -- though not all PSP patients suffer this -- then the incontinence, the rigidity, the choking.

It gathered speed like a tightly wound top.  We actually think she started showing symptoms perhaps as early as 2007, looking back; moodiness, strange decisions, wandering.  Then, in April of 2008, a tentative diagnosis from a neurologist, and in February 2009 a pronouncement from perhaps the foremost expert on PSP.  Time of death: August 24, 2011.

It's hard to blot out all of the absolutely hideous moments.  Should I?  I should I hang on to them, as part of a whole, well-loved life?  I'll decide later.  Right now, one by one, I'm excavating nuggets from the good times before our times together were clouded by sorrow, anger and anxiety.  It feels good.  Trying to encourage the kids to remember, too, especially as they'll have to work harder to dig pictures from their very early years.

Dying with PSP

I watched my mother die last night.  I looked straight into her eyes, and held her gaze, as she gasped her last few breaths.  I should say perhaps that I was "with my mother" when she died last night, but are any of us actually part of that process, unless we're dying ourselves?

Part of me was outside, looking in, partly horrified, partly fascinated.  I suppose I was in shock.  I did speak to her, my husband did, too; I think at that moment I was thankfully more concerned with easing her way than with my own sadness.  Even though she was largely unresponsive for most of the day, I swear she looked at us at the end and tried to say the word, "love."  Twice.  Husband thinks so, too.

I sat with her a few hours after and still felt like she was there; out of habit, I kept talking to her and stroking her.  Later I kissed her cheek, and it was cold.  I remembered the night before, when the kids and I were watching that HBO bio movie about Temple Grandin. She was fascinated by death, and asked those around her when she saw a dead horse, or a steer:  "Where does it go?  Where does it GO?" 

I also have to say that I was awake half the night hoping that I did not have a visitation of some sort.  I've heard those tales about people, having just died, who leave their spirits hanging around their earthly surroundings for one last goodbye.  Mom herself said that the day after her brother died, she felt his presence so strongly that she opened the window and called out, "Come in, Craig!"  This, I did not need.  This would have put me over the edge.

We're not sure of the cause of death in the end.  She was unable to swallow solids or even liquids without choking. On Thursday, I asked the staff at her home to stop trying to feed her solids, as she continually coughed and teared up whenever she was fed.  I knew that was the beginning of the end, but felt we had no other choice. She did not want to be intubated.  And she was so rigid, so obviously uncomfortable, that at that point I thought it the most merciful thing. Not an easy call to make.

I should add at this point that if you have a loved one with PSP who qualifies for hospice nursing, by all means seek that help.  These wonderful people are knowledgeable and caring, and my nurses at least were available to me at all hours.  And we had quite a few of them.  All wonderful.  Their main concern is making your loved one comfortable.  And they'll tend to you, too.

I'm passing over from relief from her suffering's end to grief, and unfortunately to anger.  She was 65.  Just isn't fair.  I'll get over it, I hope.  I will share what a friend of ours, a Buddhist monk, wrote to me, which is helping me right now:

Peace, my Heart

Peace, my heart, let the time for the parting be sweet.
Let it not be a death but completeness.
Let love melt into memory and pain into songs.
Let the flight through the sky end in the folding of the wings over the nest.
Let the last touch of your hands be gentle like the flower of the night.
Stand still, O Beautiful End, for a moment, and say your last words in silence.
I bow to you and hold up my lamp to light you on your way.

~Rabindranath Tagore  

Frequent flyer caregiving

The past two months have been a flurry of cross-state relocations:  My dad back to Florida, myself and family "down South," and now, soon, Mom to a new home, just a few streets from my new house-to-be.

Caregiving from afar brings its own challenges. We weren't quite ready to send Dad off, but he was very eager to be in his own place in the sun.  So with promises extracted from him to follow his med schedule religiously;  to not go too far from home; to avoid salty foods; and to get a plethora of household helpers on board, I nervously let him go.

He has broken every single one of his promises.  For some reason, unless a drug is clearly anti-rejection, he feels he can just add or drop it at will.  He's not simpleminded; he's clear enough in his head now to conduct major business transactions vis a vis life insurance and the like.  I am powerless to explain this blatant -- what, ignorance? rebelliousness? -- and it has led to several shouting matches over the phone, which sets back my hard-won peace of mind quite a bit.  At this point, I figure he owes me about a thousand bucks for wasted yoga classes.

Joking, joking. But it's mighty hard to care for someone who seems to not give a damn about caring for himself.

Flash forward.  I'm in Virginia, and spent most of my second weekend here driving four hours each way to visit Mom in Pennsylvania.  There she lies, now, completely unable to communicate and several states away.  While there are loving cousins nearby, I found this unbearable.  On the way home, I decided I had to move her to a facility close by.  Y'all know what the entails -- the touring; the paperwork; the uncertainty of putting your loved one into a new set of strange hands.  Did I mention that this new place costs thousands more, too?  Dad is footing the bill; he is certainly far more supportive of her care than his own.

Plus, Mom isn't the typical resident.  Not that there is one, but here is a younger woman, completely paralyzed and quite rigid.  Her needs are not the norm.  I did my best to let folks know who would be showing up at their doorstep, but I imagine there will be a long period of acquainting her hospice and her new home with the immense challenges of caring for someone with PSP.

Meanwhile, the new home is blocks away from my house.  So this will be my first time helping to care for her in my own vicinity.  Will I be there every day?  Or almost?  Or will I not go that much, given the hassles of moving, finding a new job, raising tweens etcetera -- and then feel guilty?  It remains to be seen.  But I do still find that I enjoy being in her presence, and it soothes me to feel that I'm comforting her, to the extent that I can.  She can't respond, but I know she loves family being around.  I just know it.

They're the sick ones

How many times has someone said to you, "Hey, how are you doing?" and your mind immediately went to your sick loved one, and how well he or she was doing that day, before you framed your own answer to that question?

That happens to me all the time. At first, I took it as normal, and I was actually offended when people assumed that I could, in fact, be well and happy.  Good gawd, people, my parents are dying, and you have the gall to ask how I am?

Of course, even if I'd just spent a grueling day in the ICU, I answered anyway that I was doing just fine.  Because that's how we usually respond, right?  Does anybody really say, "You know, I'm feeling crappy, thanks for asking?"

I realize now, though, that that was the truth.  I, myself, was actually o.k.  I suspect that too often we caregivers take our patients' sicknesses as our own.  Of course, they are going to be constantly on our minds.  But are we physically sick?  Do we also have PSP, or need a liver transplant?  No, we don't.  We are alive and well, and our health and mental state should, if at all possible, be addressed separately from the illnesses suffered by our loved ones.

If you don't mind me saying, caregiver friends -- you have a life.  Don't forget that.  Hold it dear.  If your normal routines, your social life, and your friends seem very remote, try to nourish that inner life any way you can.  More about this to come.

The universe giveth

A very strange experience today:  I brought Dad to see Mom at today.  It was the first time they have seen each other since July, after being married - and not separated for more than a couple of days -- 46 years.

Here is Dad, getting better, with a new liver, and ready to go back to Florida in two weeks to stay for 10 days, or until he feels the need to join us in our new home.  And there is Mom: Steadily worse. Today she was able to open her eyes, which was glorious, as they widened with joy and surprise when she saw Dad. She was even able to smile a bit. Wonderful moment.

After that, she went rigid.  Unable to respond with even a syllable, and able to move her head just a little bit, her eyes following, slowly, for the rest of the hour Dad was able to bear being there.  She apparently has a hard time blinking as well.  When I gave her a magazine, I had to position her hands around it.  When I try to move her arm or leg, it causes terrible tremors.

We have taken her off the Amantadine, as she has been on it for more than a year now and its effects are considered to be temporary, so that may explain the eyes-open-but-now-unable-to-speak phenomenon.  However, I think she might be more comfortable this way, seeing what's going on around her.  What do you think?

Dad held up well, though the entire experience was a shock.  He's never good in these kinds of situations; is any man?  He was a depressed, disgruntled patient, too.  His blood pressure went sky high and he fell up the steps going into the house.  Blood everywhere.  No big harm done, but just a gory reminder that he is still shaky in every way.

Eyes wide shut

We have approached what is quite a horrid phase of PSP.  While physically completely debilitated, basically unable to move other than to swallow, eyes forced always shut, Mom still seems to be mentally aware. She's now officially a prisoner in her failing body.

I am horrified.  I'm not sure at this point if I should be wishing for a hasty end to this, and I'm ashamed of myself for even considering it.  The thing is, she seems very comfortable. Her hospice care is wonderful; she gets physical therapy twice a week and a massage bi-weekly.  She is eating, albeit pureed food.  She responds. She sometimes smiles a little.

In fact, she's lost none of her marvelous sense of humor.  We actually had a great time during my visit last week, giggling like crazy.  See, two of the gents at the home had a little shouting match, all up in each other's faces - typical strutting male stuff.  The entire common area could hear their salvos:

"You talkin' to me?"

"Yah, you.  I don't like the way you look." 

"Well, I'm sick of your shit, too."

"Get up!  I'll show you what for!"

Never mind that one fellow was sitting in a chair, strapped to an oxygen tank, and the other wobbling precariously behind a walker.  Nope.  They were ready to duke it out.

So, a fun day.  Also, Mom may have difficulty responding, except when you tell her you love her.  Then the answer comes, clear as a bell:  "I love you, too, sweetheart."

Family love - and abandonment

Mom opens a gift of new clothing.

Two weekends ago I went to Pennsylvania to meet Mom's plane and help get her settled. She had traveled up from Florida to her new AL home in the small town where she and Dad lived for 30 years and not far from her birthplace. (We hired her friend, a nurse, to bring her, for those of you interested in the caregiving logistics.)

Seeing her in all the old places was momentous. She didn't look out the window much, despite me pointing and yelling. "Look, Mom, the bonsai farm!  Jake's Flea Market! Country Meats!"  She did agree the fall foliage was lovely.

What was even more dear was the birthday party we had for her on the second day at the new AL. My cousins and Aunt J. came. I hadn't seen some of them for years -- I haven't lived in the area for eons -- and neither had Mom. We had lunch and cake in a private dining room.

No matter that I hadn't seen my family nor really spoken with them in years. They showed up. They cried with me, and offered help. They have visited Mom several times since, as I struggle to keep Dad alive here in New Jersey.  Dad's brother, with whom Dad had also lost contact for a number of years, now calls every day, and has driven hours to visit on many a bleak day.

That's what family means. My mom's sister, Aunt C., who didn't go to see her once at the home in Florida, though she lives a mere two hours away? Who didn't lift a finger to help her or my dad during the year and a half he took care of Mom at home? Is that family? I'm still struggling with that one. This same sister also ditched my grandmother, leaving her completely in Mom's care during the agonizing, disease-ridden last three years of Grandmother's life. Mom was never the same after.  It was that grueling.

I know it's not very yogic of me, but I don't think I can bring myself to ever gaze upon Aunt C. again. Though we could also be accused of ignoring my cousins and uncle, I suppose. But in a clutch, I like to think I would have stepped up.

Anyway, in the middle of the party, during a lull in the jokes and laughter, Mom looks up and addresses my aunt.  Keep in mind she rarely initiates a comment anymore and is semi-responsive when you address her. Anyway, she says, loud and clear, "It's good to see you again, J."

Pass the tissues!