just when you thought....

I went over to my mom's this evening to meet a woman to sign a binder on her place.
I am the Executrix. I love the way that sounds... it makes me want to wear leather and furry handcuffs.

The contract has Hubbard clause because this woman needs to sell her place first.
I like her. She's a nurse, like mom. I hope she gets it.

But I was early. And I started to wander around.
And it started to get hard.

On the counter I found a tape and a player that my sister in law had left out for my brother to listen to. It was a tape from one of the many visits to one of my mothers many doctors. Sometimes, randomly she would bring along this little cassette recorder, because sometimes she didn't remember what the doctors told her.
I don't think she ever listened to any of the tapes after the appointments.

My sister in law set it out so we could hear her voice again.

This appointment was with a surgeon from Yale. One of the best. He specialized in difficult cases. She visited him a couple times. This visit was shortly after a year on chemo, and a few months before her death. On this tape I heard him tell her that she was still inoperable. That damned tumor was still sitting right on her vena cava. A major artery. And this position is what made surgery out of the question.
But - he told her all was not bad. The chemo was shrinking her tumor. I heard her voice add that indeed her markers were down.
This was all good news. Reason for hope. He advised perhaps some radiation.
Don't rule that out.
You look good he remarked.
Stay positive. And by all means keep in touch, he told her.
He was lovely... this surgeon, with a delightful British accent and a gentle European way. He was so soothing, and confident, and gave her that knowledgeable hope - that she would only take from the best doctors.
He assured her. Even though he could not help her.

I was with her at this appointment. Sitting right next to her. I believe I was holding the little cassette recorder.
I heard the hope, along with the subtleties of fear in her voice on that tape.
I don't remember hearing that when we were there.

pump it up

yesterday we had a little pump installed.
whew.

no more math.
this snazzy little contraption drips in a constant flow of morphine.
mmm, morphine.
they used her power port - easy peasy.

it even has a little red button for breakthrough pain - (which we are using more than we thought we might, and so the pump is actually being adjusted to a higher dose right now).
the button rocks. no measuring. no spilling. and clean up is a breeze!
plus you can push it as many times as you want without worry.
it knows.
oh... and so do we. we know what this means.

I was an art major

One of the main reasons I became an art major was to avoid math.
It was all working swimmingly until I got out of school...and needed to do math.

I don't struggle so much anymore - generally speaking...

My most recent math lessons have been in the concentrations of liquid medications.

A liquid medication is prescribed in milligrams, and is measured in concentrations of milligrams(mg) per milliliter(ml).

When a medication prescribed at 20mg per 1ml, and the dose is 20mg per hour then you can measure and administer 1ml of liquid each hour.
Easy right.

Ok so lets say you need to increase the pain medication, but your patient is having trouble with liquids - so instead of increasing the amount of liquid given - you can simply use a higher concentration.

Still easy right.

But let's say now... now you get a concentration of 50mg per ml. But your prescribed amount has only increased by 5 mg.
Well now - that's very different. In fact, its more than double the potency but not double the dose.
Well...now that's something you want to pay attention to.
Because if you were to give the old dose of 1ml per hour...well that would be bad.
That would be very bad.

And let's also say that the pharmacy who supplied you with this really high concentration of this tightly controlled substance decided to put it into the same color bottle as a different medication where the dosage is 4ml. Well now that would be worse than bad. I think that would be instantaneous.

Let's add to the mix that four, count 'em four - non-medical family members are the ones dosing this stuff out.
Well whoooo weee... don't lick your fingers.

(later I will post some pics of the measures I put into place to try and avoid mistakes)

Second string

On the weekends we deal with subs - we don't have our A-team of nurses and doctors around.

This weekend we were visited by a nurse that's not only unfamiliar with our case but is new to hospice.
Let's just say it turned out to be a learning experience for everyone.

So I get a call from my sister-in-law on Sunday that this nurse is planning to call an ambulance and transfer my mother to the hospital.
Um.
What.

I get on the phone with the hospice nurse --to explain how hospice works.

The conversation went something like this:
me: "If we transport her to the hospital what will they do there?"

nurse: "well ...there are procedures, surgery..blah blah."

me: "Um, we're on hospice - she is DNR. We don't want surgery or any invasive procedure."

nurse: "Well they can do tests to see what we are dealing with."

me: "First, we know what we are dealing with." duh.
"And why would we do tests when we are not going to do treatment."

nurse: "The doctor said based on [my examination and findings] that we need to transport her."

me: "What doctor?"

nurse: "Well, I couldn't reach her primary so its the on-call."

Great a non-hospice doctor, unfamiliar with our case.

This nonsense went on for awhile until we finally got a doctor we know on the phone who stopped the madness.

In the meantime - mom is sitting in her chair, the Patriots game is one, the whole family is milling around her, the nurse is shrilling on the phone with a doctor, and we are squirting liquid morphine into mom's mouth as quickly as she will let us.

A short time later we all breathe a sigh of relief...
The nurse had left. The Patriots had won. The morphine started to work. And mom starts her familiar babbling. [she basically talks endlessly when she is awake.]

Suddenly mom says:
"Hey, you know.. its been a pretty good day hasn't it?"

Yes. We all laughed... and of course, agreed with her.

Today is two days later

Thursday evening we were able to get Mom out to her favorite recliner for one last time. It took three of us to get her back into her bed that night.

My soft spoken wife read to her from Jonathan Livingston Seagull with classical music playing quietly in the background (tho she had originally wanted to put on the 80's station).

As we got Mom back into her wheelchair for the trip to the bedroom- she gathered her scattered thoughts and said,
"Ok, so then tomorrow morning I can get in line"

shortly after,
"It'll all be over in two days"

Then,
"I'm afraid of being alone"

To which my wife responded,
"well, we can do it together."

"No, we can't."

So... we'll see. We'll put on the Notre Dame game and we'll just see.

quote of the day

"Robert Mondavi hallowed be thy name."

Seriously, I can't make this up. And who is that guy who got a TV show based on shit his Dad said...

We are keeping our sense of humor here. One must.
Personally, I am not a big fan of the Mondavi's - but no one quotes me.

cheers.

"Does Jesus have bezoars?"

We are trying to answer that and other questions.
Luckily the chickens are in the coup, and my brother sat up all night with a shotgun in hand to make sure they were safe.

Have you heard of 'terminal restlessness'.

whew.
it's tiring.

the imagery of death

Last evening, after telling my brother she was tired and he should leave so that she could sleep - my mother had her caregiver call him back to the house.
When he returned - she confessed to killing some rabbits. I am unclear whether these were the same rabbits I had removed the other day.

Perhaps we are seeing a pattern here.
While my brother is disturbed by the behaviour, I rather think she is trying to tell us something ... muddled through her dementia.

We are familiar with the usual apparitions of those approaching death.
They may see previously deceased loved ones - even pets. Angels may appear to them. Or they may relive parts of their past or childhood.

We have experienced many of these over the last several weeks.

My mother asking her granddaughter if she had any confessions to Papa, who was there with her ('Papa', my mothers 3rd and 4th husband (a story for another time) died in 2001 of pancreatic cancer under my mothers care).
Lucy the cat has visited.

This weekend she wanted to jump on her bike and ride into town for some ice cream.
I told her she could go tomorrow ...because it was already too close to dark.

There have been many references to riding a bus. At first it was the sensation of climbing stairs. Then it became apparent the stairs led to a bus. She didn't really want to be on the bus - and so has gotten off each time. Is the bus her way of getting to the 'next place'? Why does she keep getting off? Is there unfinished business?

She has spoken of sleeping in a tree. The most comfortable tree you could imagine and no matter which way you tossed and turned it was delightfully soft and welcoming.

At one point in her illness she was so uncomfortable with pain and sickness that my spiritual wife and I wished for her peace and comfort.
We decided on a traditional ritual of writing a blessing, wish or prayer on paper and burning it in prayer.

the note reads "stay on the bus, it takes you to the tree." and we added a piece of sage to burn for good energy and space clearing. And yes, that ashtray is from the 80's.

And now...we have the odd fate of these rabbits and horses. Why is she killing them? Why does she need to confess this... first to my wife and I, and then to my brother?
Clearly something is causing distress.
I spent some time with her yesterday afternoon assuring her that we were all fine. That we were all ready. That she was being cared and that she was in no way a burden to any of us.

I am determined to find what is so disturbing. I am hoping to help her find peace.
She told me yesterday that she is not afraid. Well.... except for the Beezores...

horses and rabbits oh my

And yet again we find that just when you think things have smoothed out...

I spent Friday working from mom's spare room again - we are back over there almost full time until we get the aide situation in a steady groove. Changes in schedule or caregivers cause disruptions and disruptions can lead to anxiety.

Mom did not rest at all during the day yesterday. She was very fidgety. She also has developed a strong desire to take off her shirt. We constantly tell her not to ...and she giggles.

When she tried to lay down for a nap she kept sitting up... finally the aide called me in because mom needed to talk about something.

"ok, so what is the procedure?"
"um...the procedure for what, mom."
"for getting rid of all these rabbits"
"ah...well we can just shoosh them away...like this" waving arms to shoosh rabbits.
"no, that's not going to work"
"ok. I have a friend who removes rabbits. he can come with his truck and take them away"
"good! how long will that take?"
"about and hour, it takes about an hour to remove this many rabbits"

Later that afternoon I assured her the rabbits had been removed to a rabbit farm and were settling in nicely. She seemed pleased.

When I left her that evening she was in the capable hands of Inez.
So when the phone rang at 10p.m. we knew.... if Inez is calling - something is wrong.

Inez explain mom had been very agitated for hours over horses, and was unable to rest. I told her we would be right over.
When we got there -Inez had mom in her wheelchair (this is now one of the few places she will sit still and not fidget to the point of falling). We were pleased to see at least she had her shirt on.
She confided in us that she had killed a small horse. That she didn't have a choice because of something the horse had been doing to her. Many of her sentences don't string together so it was hard to really get a handle on the exact nature of the horses death.
It is because hired aides cannot give PRN medications that we were called in to deal with this. My ever-so-patient and soft-spoken wife gloved up and gently rubbed a Haldol gel into mom's wrists. Haldol is an anti-psychotic drug - and the gel makes it work quickly and is less intrusive than trying to get her to take a pill in this state.
We continued to talk to her calmly and sort out the horse issues. As the drug took effect she calmed and became sleepy. Inez was finally able to get her into bed. We were home before midnight. No more calls.

And today ... well today is another day.

...and finally we are caught up

09/06: with the competent aide Inez in place, my giddy-wife and I venture out on Monday - memorial day. We visit a couple friends and drive around in her convertible with the top down. We are delighted. We are rejoicing in our afternoon. We think we may have found a good solution.

09/07: Tuesday has its ups and downs - but in general a very good day. Mom folds laundry with Inez and its the highlight of their day. We are feeling better and better about the live-in aide idea.

09/08: Wednesday - shift change - the proverbial shit hits the fan.
we end up firing two aides that day, now the agency is scrambling to fill in. I do think we had a bad fit with one aide. But mom is paranoid and frightened now and so confused that she can no longer tell reality from her delusions.

While I was covering in between aides I had this conversation with her.
"Mom, what do you think about going to live at a place where there are other people like you, and where you would not be alone and there would be nurses there all the time?"
"You mean ...like a retirement farm?"
"yes!, just like that - there would be other retired people there."
"That would be expensive"
"Nope, its free! You can go whenever you like."
"Well who would feed the horses?"
"Um.. the horse feeders - that's their job"
"But its very expensive to feed horses. And how many horses would there be?"
"Not sure mom, but don't worry - the feeders buy all the horse food."
"Wow! that must be some place! Too bad Madeline isn't alive, she would love it."
(Madeline is a friend who is very much alive.)

We had an aide come in last night to do the overnight and my mother told me that she was trying to twist her. I was there. There was no twisting of any sort. We are beginning to wonder if we can leave her alone with any one.

Today my care-taking-wife is there with mom and her aide. She has been sending me updates throughout the day.
She is still using a walker - but can no longer back up. When you tell her to back up, she goes forward.
When asked today how many children she had she answered "Tuesday"
She keeps trying to take her shirt off.
Phrase of the day "swirly whirly"!

catching up

Things are still moving at break neck pace here - so I am going to speed up my recap by simply hitting the highlights by date. I have gone back through our records and charts to put some of this stuff together. (spelling, grammar punctuation and capitalization be damned).

08/09: we started charting - meds, input/output at times, and sometimes notes from the day.

08/11: she went on Continuous Care for uncontrolled nausea, dizziness and pain management.

08/13: we upped her methadone to 3 times a day (aka. q8)

08/18: we met with a private agency to discuss overnight care. mom sat in on that meeting and had a lucid discussion.

08/19: mom was getting more and more unsteady with the walker (can't remember when she started with the walker exactly) and had a fall with my svelte-wife trying to catch her. they both went down (mom outweighs my wife by 50 lbs). everyone is ok - just scrapes and bruises. luckily our hospice nurse was in the house at the time.

08/23: tucking mom into bed she stops me to ask
"If a fish is nibbling on my blanket and I slap him in the face, will he stop?"
I answered "of course."

08/24: we meet the new night time aides and one starts that night. we spent the night to make sure it all goes ok, hoping we can soon start sleeping at home again.
Somewhere in here we start using a wheelchair.

08/25: Mom vomits in the afternoon. This is particularly bad...because she is vomiting as a result of a bowel obstruction. I am alone with her at the time and luckily have my cell in my pocket. I call hospice and my close-by wife. My quick-wife is there within 10 minutes. The on-call nurse is there within the hour. Mom goes back on Continuous Care.

08/26: Somewhere in here we start Decadron (steroid) as an anti-inflammatory. This improves Mom's physical condition over the next couple days. But she seems rather confused. She is having trouble with the phones and tv remote.
More of her meds are becoming scheduled. she now takes methadone, zofran (for nausea), ativan, decadron /q8; meclizine q/12; and her colace and miralax daily.
(did you know that all opiates and narcotics cause consitpation?..sometimes severe. so that means...that drug addicts are constipated. shame really. they could enjoy their drugs so much more if they paid more attention to bowel health.)

08/28: With round the clock care, and help from all of us we actually get Mom outside of her house for the first time in weeks to watch the motorcycles ride by.
The CT United Ride goes right by her house. This year there were about 2500 motorcycles.
here is mom and her aide waiting in great anticipation.

08/29: Mom is starting to refuse to take medications. She wants to write out her orders, she wants confirmation that we are dispensing the right meds. I walked in this afternoon to find my wife and the hospice aide had moved all the furniture out of the way so mom could fit her wheelchair into the spare room to review her medical records from the past couple months. At the time I got there she was already almost 2 hours late on her meds and sitting at the desk writing out each medication in detail.
I called the agency to arrange for 24/7 care. Its now become too difficult for us to handle. We are burnt out, we've not worked full days in a month and mom is uncomfortable with the amount of personal care we now need to provide.

08/31: Continuous Care stops. Mom is very confused. We are helping her to dial the phone.

09/01: Mom's next door neighbor stops by while my caring-wife is on duty. She's recently had a stroke and can't button her shirt, and is looking for some help.
Gotta love life in the retirement village.

09/02: Mom can no longer differentiate the phone from the remote. She cannot dial numbers even when she is told which number to press. We spent a few long minutes with me saying:
press 2... she presses 2
press 0... she presses 7
ok lets start over.
press 2... she presses 2
press 0... she presses 8
ok lets try again
press 2... she presses 2
press 0... she presses 0
press 3... she presses 7

09/03: She tries to document her meds for the day. She can no longer write.

09/05: Inez comes. She is our first full time aide and will stay from Sunday - Wednesday. Skeptical at first, we grow to love Inez. She clearly has experience with dementia.

...

the recap

Before I forget everything that's happened over the last month ... these next few posts are mostly for me.
Then again... what isn't really.


week 1.
We waited almost a week after the laprascopy to see mom's oncologist. He had been on vacation. We already knew the news was not good, and mom was getting weaker by the day.
So much so in fact, that the day before her oncologist appointment, on August 2nd - she signed herself up for hospice care. Yeah...that's mom. This will become a common theme -- mom is in charge.

With great anticipation we sat and waiting for the doctor (me, mom and my SIL).
He came in completely unprepared! He had not looked at her test results and was not ready with a prognosis or plan of treatment. Apparently, his staff did not update him.
Almost needless to say the three of us were pretty hard on him for this. We had been waiting...sick with anticipation only to have him walk into the room and say ...so how are you?

He became a bit defensive after that... he left the room for a short while and examined the results.
He came back and said...this is very serious...duh - but still suggested palliative chemo. I really got the feeling he was shooting from the hip.

Mom has had plenty of chemo to know that the side effects along with her weakening condition were not how she wanted to spend her remaining time.
She decided not to get treatment.
We went home, and met with our hospice team.

Their first order of business was to get her pain and nausea under control. At that time mom was on percoset q4, causing an up and down roller coaster of pain.

learning to be present

It has been my recent practice to learn to be more present in my life. For some people presence is disturbed by their past - for me its mostly future. My mind is generally several steps ahead of reality. This causes me to lose the moment. And so I have been very consciously trying to stay in the moment.
To enjoy the moment.
To be the moment.
Our lives are made up of moments.
Even those moments that we consider in between the moments of our lives.
They are all moments.

We, my family, have been given an opportunity to learn how to be in the moment. This can be done simply by changing the moment so often and in such varied, unforeseen ways that planning is simply not possible. That being present is your only choice.
It's kinda like taking a summer course - the learning has been consolidated into a very short and demanding amount of time.
In this case, one month.

I stopped blogging at that point, one month ago, and I shouldn't have. Blogging is my diary, my journal and often my memory.
So now, for me... I blog.

In late July my giddy wife and I made plans to visit Ptown for a couple days to celebrate our 25th anniversary. The timing ended up being not very good - tho we didn't know that when we made our reservations back in the winter.

My mother, as I have mentioned only once or twice here, has been dealing with cancer since March of last year. This past winter, after chemo and radiation, she was dubbed in remission - tho pain and other symptoms continued to bother her. She persisted in going to doctors for tests and procedures whose outcomes proved nothing. She was getting frustrated.

By the time we were packing our bags (not too many bags, it was a short trip...but hey... it was Ptown, so I of course would need several pairs of shoes ... none of them being sneakers...but that is a story for another time) my mothers pain level had escalated to a point where they were going to finally look inside. She had had a scan which showed "something" and they would now do a laproscopic biopsy to look inside.

Just before we left, my mother assured us she would be fine and to go and have a good time. In fact, she drove herself to get pre-procedure blood work that afternoon.
That was July 24th.

Her results were not good. All the previous scans and blood work somehow hid the truth.
We came home a day early and went to pick her up at the hospital. She was sore, but walked to car, got in and we whisked her home.
That was July 28th.

Today is August 31st.
My mother is wheelchair bound, cannot figure out how to dial her own phone, she cannot bathe or bathroom herself... and asked me yesterday why there was no food service at this place (her home).

It's been a month.

We have been present everyday.