On Death, Duty & Dysphoria

On March 17, 2010 my beloved 89-year old grandmother was referred for hospice care. Her dearest wish was die at home surrounded by those who love her. Because she has been living with me for the past few years,
this meant that she would die in my house. On March 21, she got her wish.

I started this blog because I discovered that writing about the situation helped me to process the tide of new
information and swirling emotions that comes with being a hospice caregiver. By documenting my journey,
I hoped it would help me to cope with everything that happened in the days to come. It has.
I continue it now, both as a tribute her remarkable life, and as a means of coming to terms with her loss.

Everyone handles the death of a loved one a little differently. If you are dealing with a similar situation,
or if you are one of the many adult children or grandchildren faced (as I have been) with making end-of-life care choices
for an elderly relative, I hope these posts will help provide some perspective. Perhaps, in some small way,
my experiences will help you cope during your own journey.

Saturday, March 20, 2010

Fading to Blue

A quiet day.  My mother arrived around 9 with muffins and cinnamon rolls - in our family, junk food has always been a remedy for a crisis.  I told her about Grandma's condition with the awful moaning, and about how she had recognized Chauncey, and Mom started to cry.  She couldn't bring herself to go upstairs yet, so she busied herself with shoveling the snow from our front walk.  Before she had finished, our hospice nurse Toni was here.  She immediately went upstairs to make Grandma more comfortable.  When Mom came back inside, she was able to go up for a little while - I think having Toni there made her feel less frightened of what she was going to find.

I cannot say often enough how grateful I am for the support we are getting from the hospice people.  When Toni came downstairs after taking care of Grandma, she sat down and told us everything she did for her (she even managed to get the blue morphine stain off of the corner of Peggy's mouth), and everything her medical professional eyes had noticed.  The most alarming thing she saw was that Peggy's right foot and toenails were starting to turn blue - a sign that her circulation is shutting down.  "Don't be surprised," Toni said, "if the blue color starts creeping up her limbs to the rest of her body."  Oh joy - something new to look forward to experiencing.

Toni reassured us that we were doing all the right things for Grandma and said that we were taking good care of her.  She told me not to beat myself up about oversleeping on the meds this morning, because it's human, and understandable, given how exhausting all of this is.  On an intellectual level, I know that - on an emotional level, it helped to hear someone else say it.  Toni also said that I should start dispensing the meds every two hours now as late as I can, but for overnight, it would be okay to take a 4 or 5 hour sleep break.

My mom shared with Toni some of the pictures of Grandma she has been gathering on her laptop to put into some sort of slide show for the memorial service.  She said she wanted to show Toni what Peggy was like in better days - how happy and full of life she used to be - but I think Mom needed the reminder of those days as much as she wanted to share them.  We started to swap stories about Grandma - what a sore loser she was when you played cards with her, how she used to bake dozens of cookies to share with her friends every Christmas, how she taught water aerobics until she was nearly 80 - happy memories. We also pulled up my blog, and Toni said it was a very healthy thing for me to do - a good coping mechanism.

I was surprised that Toni stayed so long.  She had taken care of Grandma's needs, and yet she patiently sat and listened to all of our stories, and looked at our photos with genuine, sincere interest.  She never once looked at her watch, or gave off any signals that she was bored or that we were wasting her time.  She even took the time to pay attention to Chauncey when he pestered her to notice him.  I couldn't believe how incredibly kind she was, and then I realized that this is what she does.  She is not only here to help take care of Peggy, she is also here to help take care of all of us.  That's the beautiful gift of hospice.

After Toni left, we began the transition to the schedule of dispensing the meds every two hours.  I set the alarm on my cell phone to remind me when the next dose is due.  In between doses, Mom and I started talking about Peggy's memorial service - actually services, as her friends in Florida (where she lived for more than 30 years) would like to have one there, too.  As Peggy's will specifies that she wants her ashes to be scattered in the same place as my grandfather's were 20 years ago, we will need to make a trip to Florida, anyway, and it would be nice to connect with all of the people who knew and loved her there.

I find it hard to wrap my brain around the idea of the memorial service.  It is taking all of my strength just to process and handle what is going on now.  Even though I know it is imminent, I just can't jump that far ahead yet.  What I did do, however, is create a guest book page on this blog (the "Remembering Peggy" link in the right page bar below her photo) so we could invite friends and family to share their memories of her there.  It gives me some comfort to think that I can transform what began as a diary of her death into a celebration of her life.

Brian came home an hour early - evidently they did not need him as long as anticipated, so I sent my mother home.  Even though she's not here at night,  she has not been sleeping much either.  I gave Grandma another dose of medication, and took the two hour window between 3 and 5 to take a much-needed nap.  It was especially quiet in the house, as I had called our "puppy au pair", Chris, to take Chauncey for a long walk.

Chris is this tall, genial German guy who makes his living as a professional pet care specialist.  He sounds a little like Arnold Schwarzenegger, but his English is excellent, and he is one of those people who has a genuine connection with animals.   We first hired Chris about three years ago to come and take care of our menagerie of pets when we were going out of town for to do a theatre residency.  We often take Chauncey along with us when we travel, but we couldn't on this occasion. We also needed someone to administer twice daily insulin injections to our diabetic cat Petruchio.  Although Peggy was staying in the house while we were gone and could handle feedings and taking Chauncey out in the yard for potty breaks, she couldn't handle the injections, and she couldn't give Chauncey the amount of exercise his high energy disposition requires to keep him from chewing up the furniture.  Enter Chris.

All of the pets get along well with Chris - even Gatsby, who usually hides when strangers come into the house, will present himself to be petted when Chris comes over.   Chauncey absolutely adores Chris - he can hardly contain his enthusiasm long enough for Chris to put the leash on to walk him.  Chris refers to him, affectionately, in his thick German accent, as "Monster."  We not only use Chris whenever we go out of town and need pet care, we also have a standing "play date" set once a week for Chris to take Chauncey on a long (we're talking hours long) walk.  It's an indulgence, but we don't always have time during the week to give Chauncey that kind of concentrated exercise, and it isn't that expensive.  Another plus is that Chris often takes him out with one or two of his other clients' dogs, so Chauncey gets some regular doggy-socialization, which I think is good for him.

I am writing about Chris because I was reminded of that first time he came to take care of our pets.  I had asked him to also check on Peggy whenever he came over, because she was somewhat nervous about being left alone in the house for several days.  When we returned we discovered that, not only had she managed - even with her limited hearing - to pry his entire life story out of him (something she did with nearly everyone she met), she also conned Chris into vacuuming the downstairs floor of our house.  She had decided to surprise us by cleaning the house while we were away, but our vacuum was too heavy for her to maneuver, so she asked Chris to help her.

When I heard about this, I was mortified - we hired Chris to take care of the pets - and nothing more.  I paid him extra and told him if she ever asked him again, to just say no.  I made Peggy swear that she would never ask him to do anything that didn't have to do with the animals.  Cleaning the litter box - fine. Cleaning the dust off the ceiling fans - off limits.  To my knowledge, she kept that promise.  If it was otherwise, well, I guess that's between her and Chris.

The reason I have my doubts, is because this was one of Peggy's most endearing and annoying habits.  She always had a knack for charming people into doing her favors. That, in itself, is not so terrible - the annoying bit is that she often conned people into doing things that she was perfectly capable of doing herself.   Making coffee, for example.  When my grandfather was alive, he always made the coffee, without fail, every morning.  Peggy was perfectly capable of using the coffee maker - I saw her do it plenty of times for Sunday dinners and when company was over - but in the mornings, the coffee pot seemed to become some strange, foreign article, and she was incapable of deciphering its workings.

After Grandpa died, Peggy somehow managed to make coffee for herself in the morning. I know this because, for more than ten years, I sent care packages of exotic flavored coffees to her in Florida.  When she moved back here and started living with me, somehow she could never seem to figure out how to make the morning coffee - she always waited for me to do it, and complained when I didn't make it early enough to suit her.  Whenever I went out of town, I left a detailed set of instructions for her on how to use the coffee maker, and somehow she managed to cope.  The minute I returned, however - no comprende.

The living with me thing, by the way, was only supposed to be a temporary arrangement.  When Peggy turned 80, my mom and I decided that it was time for her to move home from Florida.  Because she was so far away, we were missing too many holidays and milestone celebrations, and we wanted her to be here to share them. We also knew that she was getting older, and we wanted to be closer so that we could take care of her if her health failed.  As there was more space in my house than my mother's, the logical choice was for her to stay with me - at least for a while.  The arrangement became one of joint custody of Grandma - she would stay with me during the week, then go to my mother's house for the weekend, so Brian and I could have a little privacy and some semblance of a personal life.  (It is very challenging to get "romantic" with your boyfriend when your octogenarian grandmother is just down the hall, even if she is deaf as a post.)

As weeks turned into months, and then to years, we often talked about Peggy getting her own little apartment, someplace where there were people her age with whom she could socialize, as she was a very gregarious person.  Somehow that never materialized, and eventually she just dug in her heels and decided that this was the place she wanted to be for the rest of her life.  That has not always been easy for me to handle.  I love her dearly, but our personalities are, in many ways, incompatible, and we have never been the best of housemates.  So she got her way in the end, and while I cannot help but feel I was manipulated into the situation, I do not regret having her here all this time.  I know that not everyone is lucky enough to have so much quality time with their grandparents, and  I also know that, in the time to come, I will feel even more grateful to have shared so much her life.

One of my favorite stories about Peggy getting her own way was one my Grandpa used to tell.  When my mother was a child, the family lived in Chariton, Iowa.  Chariton is a typical Iowa small town.  When my grandparents lived there, many of the major businesses were located around the town square, but the parking spaces all required parallel parking, and Peggy did not like to parallel park the car.  So what she would do was stop in the middle of the street, then go into one of the shops and find some man to park her car for her.  It was never hard for her to charm them - she was a pretty woman with a big bust, and she was adept at appearing to be helpless.  According to my Grandfather, it became something of a town joke - the local shop owners would see her car roll down the street and say, "Here comes Mrs. Monk - somebody better go park her car."  Somebody always did.

I have just administered another dose of medication.  Earlier tonight I showed Brian how to give the meds, and we set a schedule to manage the doses so that I can try to get a little more sleep.  "It's just like having a baby," he says.  "Figuring out whose turn it is to do the 2 o'clock feeding."  There's a certain irony in that.  I have never particularly wanted to have a baby. Brian has 4 adult children from previous marriages, and would prefer not to have any more.  (Besides, we are both too old, now, for all that nonsense.)  Nevertheless, here we are caring for Peggy, who is now every bit as helpless as a newborn.  Brian and I are having a taste of sharing the "parenting" experience together, albeit sans procreation.

Brian is sleeping now, and I have one more dose to do before I go to bed.  I will prep the syringes again when I am finished, so all he'll have to do is be awake enough to squirt the liquid into her mouth, and then he can go back to bed.  Unlike me, he is one of those people who can fall deeply asleep in a very short time, and a herd of elephants wouldn't wake him.  I have a terrible time getting my brain to shut down long enough to get to sleep, and the slightest sound can wake me up. I will be on the sofa downstairs again tonight.  I would never be able to get to sleep with Grandma moaning in the next room.  "Rhythmic whimpering" - that's what Brian calls it.  He remembers a similar sound coming from his father, shortly before he passed away.  Although I've been listening to it on and off all day, I can't get used to that terrible sound.

Both of Brian's parents are gone, and having been through that experience, he is truly sympathetic.  He always knows the right things to say to assuage my fears and make me feel better.  I have not had to cope with a death of someone this close to me since my grandfather passed twenty years ago, and that was very different.  It was a long, wasting illness that left him in constant, excruciating pain much of the time.  On the day of his death, I was nearly 200 miles away, closing a show.  By the time I returned, he had already been cremated.   Although I was lucky enough to be able to spend some real quality time with him in the months before he died, the experience of his death was softened somewhat by distance.  I am traveling in uncharted territory here, and I am grateful to have a navigator to help me find my way.  The fact that he loves me me makes me that much more grateful - I know this was not what he signed on for when he moved in with me.

Throughout this ordeal, Brian has been remarkable - kind, patient, supportive, gentle and loving with all of us - me, my mom, and Grandma. Although, like me, he is exhausted, and I know he sometimes gets frustrated, he rarely complains.  I know he is genuinely fond of Peggy, and she has always thought the world of him.  Tonight he told me that one of the times he went in to check on her, he felt compelled to kiss her on the forehead - he said he wanted to feel the warmth of her skin while he still could.  How could you not love a guy like that?

One more confession - as many times as I have been with my grandmother today, I cannot bring myself to lift up the blankets and look at her feet.  I'm afraid to see if she is, as Toni predicted this morning, fading to blue.  I know that her feet are as cold as stone - some weeks ago, she started wearing two pairs of socks and complaining that her feet were always cold.  We have an older house, and it's always a little chilly in winter - and this winter has been bitter cold.  I've worn two pairs of socks myself on more than one frosty day.  It never occurred to me that Grandma's cold feet were not just a reaction to the weather, but a sign that her circulation was starting to fail.  Like I said, uncharted territory.

Tonight, her hands and face are still warm - I can feel the life left in her.  When Toni comes back in the morning, she can lift up the blankets and look.  If the icy blue is indeed creeping upwards, right now, I just don't want to know.

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