A Bad Case of Pink Elephants

Pink Elephants

There is a huge problem in trying to manage pain in a profoundly demented and deaf patient.  I had seen a functional decline in Dad within the couple of weeks before the diagnosis of cancer.  With the addition of pain medications the functional decline was even worse.  Bone Cancer is unbelievably painful.  Dad has always been pain tough, but clearly the bone cancer is tougher.  He has gone from taking no pain meds to taking ms oxycodone, liquid hydrocodone, and liquid fast acting morphine for break through pain.   Dad occasionally  took a little Advil or Tylenol for a thumb that got a little sore when he went bowling.  At 81 he was hiking Hadrian's Wall with Jon and me in Northumberland.  He was never infirm or arthritis ridden.  Now he is cancer ridden and taking the big boys of pain management.

Hadrian's Wall

Which brings us to a bad case of Pink Elephants.  I was called to the facility night before last at 10:30 pm "because your dad is in pain and I think you need to give him some morphine".  Because the morphine is liquid and has to be given in the mouth by syringe either a nurse or a family member must give it;  a Med Tech can't.  Nurses in the facility are only available by day.  A hospice nurse could have come out to administer the medication, but I live a minute away and the hospice nurse was probably one to two hours out from arriving.  So I went.

Dad was sitting in a wheelchair with an attendant.  He was wearing nothing but a pair of depends with a thin white blanket over his lap which I watched him pull off a few moments later.  He doesn't recognize me and the attendant says he is clearly delusional and keeps talking about having to go to the basement or up two flights of stairs.  It takes me only a moment to see that for myself.  So I go and put on gloves (this particular morphine will go right through your skin, which might be fun under other circumstances) and draw up .25ml and walk back down the hall to dad.  But this isn't feeling or looking like pain to me.  He won't tolerate anything on his skin, neither the very light blanket or the hospital gown they tried to drape him with.  He is not reaching for his shoulder and his hands and skin are hot to the touch, but it doesn't seem to be fever induced.   I decide this isn't a need for more pain meds, this is a case of too much medication.  Back to the medication room and a call to Hospice to consult.

Dad received no more pain meds that night, was watched carefully and tended to compassionately while his system cleared the drugs from his system.  Tomorrow would be a new day and a new consultation to try and find a protocol that would manage the pain without a bad case of Pink Elephants.  No one said midwifing the dying was easy.

The Game Has Changed

As you may already know my dad has dementia and since October of last year has been living in a Memory Care Facility when it became difficult to care for him in his own home and actually dangerous since he had begun to wander at night.

Last Wednesday evening I found myself in the ER with my dad who was complaining of shoulder pain.  Well, actually it was more like this:

Me:  "Dad does your shoulder hurt?"

Dad:  "I don't know where she went."

Then a grimace, reach for his shoulder and exclamation of  "Oh Shit".

I call that complaining of shoulder pain.  His shoulder was also beginning to show signs of swelling.  It did not appear to be a dislocation and because he can't remember anything there was no point in asking if he had fallen.  So off to the ER we went for an X-ray and evaluation.

The result was a diagnosis of a cancer lesion that had eaten through most of the left clavicle and created a "pathological fracture".  The cancer lesion could also be seen to have moved up into the soft tissue.  This lesion is probably a secondary cancer.  In other words he has a probably primary cancer which has metastasized from some other location.  Did I want to Order tests to find out what kind of cancer this was?  No I didn't.  I didn't feel there was any reason to order a lot of extremely invasive tests, think needle into the bone to get a biopsy, which were not going to provide any information that would change the care plan.

My dad is 90.
Profoundly deaf
Has severe dementia
Went from continent to generally urinary incontinent in a week and a half
Has a waistline that went from 38 to unable to close or zip his pants in a week and half.
Cannot communicate his needs for food, water, or level of pain.

It was time for Hospice.  We were discharged with a prescription for liquid hydrocodone and an ambulance ride back to the facility.  Technically called a "gurney transport".

Thursday by 9:30 pm he was admitted to Hospice.

Dining With The Damned

Dining with the damned or dinner time in a memory care facility.

After caring for my father in his own home for two years it was time to move him to a higher level of care.  He was beginning to have episodes of bowel incontinence, wandering at night, becoming more confused.  He was rapidly becoming a fall risk which made living in a two story house with hard tile floors problematic.   It was time for placement in a full time memory care unit.  I found a facility and moved him last October three minutes away from where I live.  They provide excellent care,   That being said - memory care units are not for the faint of heart particularly at dinner time.

I visit my dad at dinner time mostly because he is awake and we have an activity to share. Well actually he eats, I sit and converse with him.  I am a retired psychotherapist and once worked with patients on a locked psychiatric ward but this is sad beyond belief.  Dad sails through it serenely.  Being 90 years old, having very poor hearing and poor eyesight is something of a blessing at these dining events.  

I watch as the fellow across from dad slowly pours his soup on the table, takes a mouthful of water and spews it over the soup all the time rocking and moaning that he is dead, he needs to go and he can't go because he's dead.  A woman at another table is clearly agitated  She cries out like a lost child:

"Mommy, Mommy where are you?  Please don't do this."

"I'll be good Mommy"  "Really, Please Mommy"

"Granpa I can't find you, where are you?"

The therapist in my wonders what her history is and why it's replaying now.  Staff moves through calmly redirecting, cleaning up, encouraging, reassuring individuals, dispensing medications and keeping residents from clashing.  It's funny, sad, and taxing for me, but I still show up.  Dad wouldn't notice if I didn't, he has no short term memory and I have to remind him of my name and my relationship to him.  "Hi Dad.  I'm Victoria.  I'm your daughter".   

Yep, it is time to have dinner with the damned.

Painting by Hieronymus Bosch

Giving Away His Books

Caregiving is exhausting, perhaps not physically - but definitely mentally.  It requires many new abilities:

The ability to withstand the Chinese water torture Repetitive questions you have just answered.  No dad, the cats aren't out they just came in.  No dad, the cats aren't out they just came in.  No dad, the cats aren't out they just came in.  No dad, the cats aren't out they just came in.

Join the local Liars Club to sharpen one's lying skills Go to the mail box and grab the bills and then pretend you haven't been there and let your father get the mail, so you don't have to go through the recycling and pull out all the bills later and hope you haven't missed one. 

Learn an infinite amount of patience (see Chinese water torture)

Learn to be a personal valet, accountant, handyman, wait staff and chauffer  No, that cup of coffee shouldn't be heated for 36 minutes, here let me do that for you.   Here, I'll clean the kitchen those dishes you just put away are dirty.  No dad, you can't drive - you haven't been able to drive for months.

It will also challenge you to learn compassion  The individual that was so smart and competent and could speak with intelligence on any subject now can't recognize a tuna fish sandwich when it is put in front of him - but will eat it anyway.

And if you don't have one, a dark sense of humor and an appreciation for irony.  The house is large, but he lives in the library, kitchen and his bedroom.  Dad recently stood in the library and looked at all his books and said that he thought he might give them away to the local Assisted Living facility eventually.  His reasoning: He might as well have his books donated there so he could still have them if he had to move there.  He said there might come a point where he might have to have someone look after him and make sure he got his pills, etc.  But fortunately, he was still able to take care of himself.  I just agreed with him and said, yep - good thing you can take care of yourself and we can worry about donating your books later.  Then he started to cry, what about my cats if I have to go there?  Your cats are fine dad, and you are in your own home, you don't have to go anywhere right now. 

Here, let me get you your pills and a chocolate chip cookie.  Would you like milk with that?

Notification to the Local Liar's Club:    I may be willing to run for President.



 

Part 2 Integrity vs. Despair and the Meaning of Swimming Pools

Everything has two meanings.  The first meaning is generally its material purpose in the world.  A blanket is a useful material item that will keep you warm.  Its second meaning is symbolic, for example: that same blanket could have belonged to your grandmother and carries with it the memories of your time with her.  That ratty, ugly, acrylic thing may be difficult to get rid of because of its symbolic meaning rather than its material purpose.

The swimming pool is 25 years old. Dad has not cared for it at all for the last 2+ years. Every visit I made would find me sweeping, scooping leaves, adding water, chlorine and repeatedly backwashing. I would nurse the well along to get enough water in the pool to be able to backwash it and being happy when it rained and added water to the pool.  It had a closer resemblance to a green forest pond then a swimming pool.  In the last couple of months, the pool sweep motor has frozen, it has developed a leak in the grout so that water escapes to the skimmer line, it is expensive in terms of electricity, chlorine and diatomaceous earth, and very  labor intensive. In addition, the well is no longer able to pump enough water into the pool so that it can be backwashed which it needs regularly.  A month ago the well pump had to be pulled and 278 feet of pipe needed to be replaced along with check valves etc.  I didn't have the pump replaced, it was an added expense and money is in short supply.  I am trying to nurse this white elephant of a house along as best I can

 Dad has done nothing but complain about the pool to me for months:  "Worse idea I ever had".  Not really true, he loved it when the grandchildren were little and were in it with their friends; when it was a magnet for friends and neighbors and he was the only one on the block with a pool.

"I'm too lazy to maintain it".  True, Even before dad's recent health and cognitive decline he was never one for maintaining things.  Gary, the pool guy told me dad has been doing nothing but cursing the pool for years to him.

So, I made the decision to drain it. An empty pool can stay empty for years without harm if done correctly.  I called Gary the pool guy and asked if we can drain this thing in a safe, legal way that would maintain the integrity of the pool.  Yep, we sure can.

Well stupid me.  I'm thinking it is a simple matter of drain the pool, save money and move on.  No one is swimming in it or likely to.  I was not thinking of it as a symbol.  For three days I dealt with Dad's sense of loss, his poverty as a child, his relationship with his parents, and what might have been and how having "THINGS" defined his self worth.  Finally, in complete exasperation I said:  "Dad, I really don't think your obituary is going to be titled HE WAS A NICE GUY, BUT HE DRAINED THE POOL.  I got him to laugh at least.

A graduate professor once said one of the most important things we help individuals with is how to cope with loss - I think he was right.  Life is mostly about learning to let go.

Part 1 Integrity vs. Despair

Erik Erickson, a prominent psychiatrist who coined the expression "identity crisis" was also instrumental in developing the concept of stages of development across the life span.  In many ways I think he was correct.  The last stage in his theory was titled "Integrity vs. Despair and is described roughly like this:

During this time an individual has reached the last chapter in their life  Many people, who have achieved what was important to them, look back on their lives and feel great accomplishment and a sense of integrity. Conversely, those who had a difficult time during middle adulthood may look back and feel a sense of despair.  (Wikipedia)

His definition of this stage  referred to the 50's and approaching retirement.  People at his time of life didn't live as long as they do now.  I would interject a new stage of development for the time of retirement called "Re-Purposing vs. Stagnation".    I believe the description of integrity vs. despair more accurately describes the very late life stage where one faces ones mortality.  If care taking for my Father is any indication you do not want to wait until the end of your life to process all that life stuff you've been ignoring.  You definitely do not want to wait until you are suffering some kind of cognitive impairment which makes this task that much more difficult.

 Dad is 88 and comes from a generation that included World War II, and being a child of the depression.  Success for him was measured by how much stuff he could acquire.  Unfortunately, he was never fiscally prudent and in his own words "never really counted the cost of things".  Which put another way means his has completely run out of money, is deeply in debt and can't afford to live in the house he and my mother build 25 years ago when they retired.  In truth, I don't think they could afford it at any time.  They just kept mortgaging and running up a credit debt; then she died 8 years ago, the bottom fell out of the housing market and Dad continued to live way beyond his means.  But image is everything - at least to some people.

Which brings me to the swimming pool and the next blog post:    Part 2  Integrity vs. Despair and the meaning of swimming pools.

Energy is Like Money

Energy is like money, there is only so much of it and when you run out - your broke.  Sometimes there are so many energy demands that we start borrowing against the future, living on credit until that house of cards just collapses and it is bankruptcy time.  We live in a culture that doesn't honor slowing down, doesn't honor doing one thing at a time and doing it well.  It is easy to overspend our energy just like it is easy to over spend our bank account.  All of our convenience items have just made us feel like we should be able to fit more things in the same block of time rather than taking the time/energy freed up to slow down and do something important like just sit and experience the moment we are in.  We indulge in distractions like checking our Facebook accounts, our email, twitter accounts, etc a dozen times a day. It is pseudo busy, we are to afraid to stop and do nothing.  We avoid ourselves by pretending to be engaged with others.  It is hard to be alone with oneself, it takes courage.  Some are more temperamentally suited to solitude than others, but I think that we all need to learn to honor time alone and become friends with ourselves.

I think about this because I find that becoming my father's caretaker and the demands that it brings has not only shipwrecked my life for the moment but has made me realize how precious time alone can be.  My oldest told me yesterday that I should keep a journal of this time with Grandpa.  "Just do it Mom" she commanded, "How hard can it be?"

"Really hard" I thought privately at the same time, hearing her need to have a record of this time, the funny, sad, good stuff that happens.  My dad, her grandfather has dementia and it is rapidly getting worse.  A couple of months ago he had no problem with turning on the TV with the remote.  He only watches one station.  Push the On button, Push the Off button.  Easy, peasy - except it isn't anymore.  I just helped him a moment ago find the Off button, because he couldn't identify it. 

A week ago he came into the kitchen and asked me if he had eaten everything he needed to. 
"Ah....you mean like lunch?'
"Yes"
"Yes, your fine, we just ate lunch and we're good until I serve tea around 3 pm."  He couldn't remember he had eaten half an hour earlier.

Which brings me back to energy is like money.  I am hoarding my energy as I try and manage two households and my dad's deteriorating mental status.  My daughter wants a journal and I guess for a while it might just be here. 

Be careful of What You Ask For

Sonora, CA  So small they don't even have a travel poster
 

I realize that I haven't posted in some time.  I was caught up in a wild flurry of social engagements and activities.  Okay, it was wild based on my standards - Fiber conferences, workshops, festivals, and a couple of horse shows thrown in for good measure.  I was just thinking that I really needed to get back to this blog when my life took a hard left.

I had been boring my friends with my dream of downsizing, learning to live light.  I had read of a couple who had sold everything and were now "Senior Gypsys" traveling the world. I had dreams of buying a small airstream and faux painting it to look like a vardo wagon.  

Then I decided that I would just have vinyl copies of vintage posters made of every place I traveled and then have them slapped on the side like some old suitcase. 

I think the universe got tired of my waxing poetic and decided to grant my wish, sort of.

I have been spending a lot of time at my Dad's house this last year.  I have seen a decline in memory function and there were a couple of times this last month when I called him in the morning and his speech was a little blurry.  He has had a couple of strokes in the past and I suspect  he is continuing to have some small TIA or stroke activity.  So I am down for a visit on the 11th of this month when he calls to me the next morning that he has been bleeding rectally most of the night.  So one ambulance ride later and then a transfer to a large regional medical center 3 hours away, 11 days in the hospital with some of the worse nursing care I have ever seen (and I've been in a lot of hospitals both for personal and professional reasons), 6 blood transfusions, 5 major tests of the invasive sort, some family drama courtesy of my sister that would rival anything on a Jerry Springer show and I am now trying to figure out a care plan for Dad that will allow him to stay in his home as much as possible.  He was discharged on Thanksgiving Day mostly because he had stopped bleeding and they couldn't figure out where he was bleeding from in the first place.  We had declined the offer to take out his entire bowel, so.....time to go home with no guarantee it wouldn't happen again.  He does have severe diverticuli.

It is clear that he can no longer drive, at least clear to me, but he is still coming to terms with it. The two accidents on his own country driveway in the three weeks before hospitalization dictate that.   He doesn't take his medications correctly, and bills for the first time haven't been paid, and his memory has clearly declined by a healthy notch.  This last piece is typical of elders with a hospitalization and I would expect some improvement over time.  But clearly he needs help.

Up until this last month, he has done well living independently.  Given that I spent the last part of my career assessing exactly these kinds of issues for families I realized it was just a matter of time before living independently wasn't an option - that time has come.  So now my girls and I are slapping a care plan together that will provide Dad with the ability to live in his home for as long as possible.  fortunately Dad took care of the details and I have the Power of Attorney for Health and Finance which will make organizing this easier.

So I am now a bit of gypsy and caregiver.  Yep, the universe sure does have a sense of humor.

The Second Half of Life - A book review (sort of)

I'm reading a book that is irritating the crap out of me.  The Second Half of Life by Angeles Arrien.  I am seeing a disturbing trend in the self help book arena. As the writers in this field age they have begun to write about how American culture doesn't honor elders like other cultures around the world do and that "We can no longer ignore the wisdom that is irrevocably lost to future generations when our elders are marginalised or rendered invisible."  She goes on to say that .."we live in a society that has lost many traditional initiation rituals"...Really, I think this is a case of the cultural 'grass is greener' on the other side.  We have lots of rituals.  Graduation from High School, College, weddings, baby showers, divorce, retirement and funerals.  How the hell do you over look the ritual of divorce - you will spend enough money and time in court that you have to be stupid as a rock not to get that this is a major transition. 

Frankly, this sounds like a case of " Holy Cow, I'm getting older and I'm having a really hard time with it so I will write books about how much personal work I have done and how I am now a "Wise Elder" and let me show you how to be wise like me.  Yea, so???  Sounds a little like trying to prove to one self and others how important you are.  If you are wise, others will see it or they won't.  That's the sad truth of it, people need to find their own inner wisdom.  You might be wise but that doesn't mean others will appreciate that fact, actually they might resent it. Wisdom is or should be pursued for it's own sake not because it is a licence to call your self a "Wise Elder" and graciously start bestowing your opinions on others or write books about how no one in our culture appreciates how much we could do for them it they just paid attention to you.

Wisdom is hard won and many do not chose to follow it's path.  I can see that, personally I think ignorance is bliss. I sometimes think the truly clueless are the happiest.  The path to wisdom is through the valley of sorrow.  It requires deep spelunking and a willingness to take responsibility for what you may have contributed to your life's outcome.  Nothing new here.  Erik Erickson said it almost 70 years ago when he proposed that life was a developmental task.  His last stage was Ego integrity vs. Despair.  Retirement was a time of retrospection.  He also viewed the life stages as a cycle: the end of one generation was the beginning of the next. Seen in its social context, the life stages were linear for an individual but circular for societal development.  (Wikipedia).

Each of us has our own wisdom path, I sometimes think true wisdom is learning to keep our mouths shut and allowing others to learn on their own.  If they wanted our opinion they would ask for it.

Side note:  The book does have some amazing photos of hands - truly beautiful.