Mid-Winter Communiqué – The Next Step

And 2018 left much like it came in - with a feeling like nothing is going the way I want it to. The lump in my throat was coming out as tears. Even my computer was having sympathy pains . . . it didn’t freeze up but it became v-e-r-y slow and Fred has abandoned me. He's not here to help me! He's always been there to help me and make things better!

Yes, I do miss him desperately!

Even before I saw the crematorium folks, I dove into an inextinguishable state of over activity and doing on the paperwork.

Fred was special to me but I guess he was special to others as well. Apparently, the Condo had a minute of silence for him and so many folks expressed their sympathies!

By the time my nephew, Luke, came down from Calgary four days later, I was well entrenched in “getting all my ducks in order” and I didn’t even know what that meant – a whirlwind of activity with no particular direction or plan of action – no order.

Luke and I took Fred out to his favourite restaurant for lunch; although we left him in the car we ordered his favourite meal and devoted it to his memory.

I appreciated having Luke with me during those first few days. There were lots of things to be done but I really didn’t know what. He dug in and helped!!

Friends came into Lethbridge for a few days and were a great help, too.

Each day I discover just how sick Fred had been. I went into his computer - Holy crap!! One thing on top of another - didn't make any sense at all. That so-o-o wasn't like him. And he tried so hard to keep up his side of the fight.

I got lots of offers to help: some well intended and others well intended to capitalize on the trauma of grief and loss . . . Ah-h-h the vampires have not vanished.

I never realized just how much Fred did that I didn’t pay any attention to – like buying on-line; like paying certain bills; like knowing where I left things! It felt like we were two parts of the whole – without both parts the whole didn’t work. I didn't even know who I was or even who I used to be – over 48 years together – 15 years on the road – our individual identities became blurred.

 Moving On – Never Ending

My road with Alberta Health Services continues. 

For a Service that professes to be Patient-centered, the patient/family presence seemed to be left out of the equation.

Ø     I’m working with the Quality Council for this zone trying to reinforce that the patient/family relationship needs to be a part of everything they do.

Ø     I’m doing facility visits with a staff consultant (Engagement and Patient Experience) to monitor how/if they are including families in their work.

Ø     But the most exciting work has been producing a training digital story video about part of our experience. Good Surgery . .. Tough Recovery  is slated to use in staff training.

I’m going to keep travelling.

Ø     In less than a month I am going on an educational program to Costa Rica with Road Scholar (used to be Elder Hostel)

And Life Goes On

Fred’s Last Trip – the End of his Journey

Fred went into the Palliative Care Unit at St. Michael's on August 22, 2018.

He left us around mid morning, August 30, 2018 after a really brutal battle with pain and opioid toxicity. 

This is the view Fred had out his window

 

 Lo and behold, he was greeted by a big old buck with a marvelous set of antlers but he wouldn’t turn around so we have a marvelous ass.

He spent the entire afternoon dozing between two fir trees out on the lawn.

 *************************************************************

 The Party's Over

*************************************************************

It's time to call it a day
******************************
the candles flicker and dim
******************************

The party's over
*****************************

It's alright, it's alright... it's all over, my friend

****************************

I’m so going to miss him!

Murphy Reared His Unwelcome Head Again!

Fred landed in Emergency the second week in July with intense pain in his lower back and we just assumed that it was his kidneys.

Not!

After the preliminary scan, they came back to us with information that there are metastasized lesions (one on the lumbar spine-L2 and another on the acetablum – the bone around). Holy Crap!!

 So they want to do more (and more and more) tests: CT scans; full body scan; MRI; still not able to isolate the primary source of the cancer. Finally they did a lung biopsy and still have not been able to isolate the primary source.

It is getting weirder and weirder. The biopsy report said that the spot on his lung is not the primary source of the cancer nor is the prostrate. They may look at the gut.

The big issue is the pain. He has fentynol patches, is taking hydromorph and medical marijuana. Gets a little spacey at times but is managing to control the pain pretty well.

This one has really scares me! Not only does the concept of Cancer scare me, the fact that they can’t find the type of Cancer that is it; where it’s coming from; that he is in so much pain; and that there is so little I can do to help scares me even more!

For the most part, the care and the hospital staff have been excellent . . . except for (you knew there would be an except for):

Ø     It seems that the Family Physician is left out of the loop! And who knows the patient best? S/he receives copies of the lab work but does not have access to the Hospital records. And s/he is not even allowed to sit in on relevant discussions with the Care teams (so I was told).

Ø     It seems that the Doctors (Hospitalists) are changing continuously. In the 2½ weeks Fred was in the hospital, his hospital doctors changed three times.

Ø     For the most part, the staff did look on the patient and family as resources for the Care team. But there were incidents where the staff treated us as if we were not credible resources in the situation. We were told certain things by the attending doctor, but the nurse questioned these and refused to have the doctor contacted to clarify the instructions. 
 What disturbed me (and I expect other patients and family) most was the lack of . . . or . . . mis-communication amongst the staff - from the top on down . . . 
and
the inconsistency of the care.

Rant 7 – It Feels Like a Money-Grab

and

I am not stupid

February – May, 2018

Most of us were brought up believing that doctors were all- knowledgeable, committed and dedicated. Well, that bubble burst!

The first hint that my assumptions were wrong was many years ago when an eye doctor told me that he couldn’t answer my question because my 20 minutes were up . . . I would have to make another appointment. Hm-m-m! Oh, I thought that maybe it was that one doctor.

More recently, I have discovered that this situation still exists and, as a mater of fact, has acerbated into a system where you need a referral from a doctor even when you are requesting a procedure that you have had before and the symptoms are identical . . . both the medical persons get fees and it feels like you are not smart  enough to know.

Another situation is where tests are required again and again for the same thing by different doctors . . . add to that the frequency of getting tests done . . . more fees for each doctor as well as the testing facilities.

Then, there are the follow-ups – that could be a five minute conversation after an hour wait, to confirm that things hadn't changed or are as they should be . . . (even if the doctor really hadn’t read your file) then another appointment three or six months later . . . so many of these could be handled through a phone call or email (G-d forbid). Oops, fees are more for a visit than they are for a phone call.

Some of the side affects of this presumptuous money-grab are: long waiting times (to see the doctor who will refer you to the doctor where you will wait again); the doctors have no idea who you are or why you are there; they are too busy; they book too many patients; patients need to come back again and again. Not to mention the psychological toll taken on the patient who is often excluded from information that could help him understand what is going on.

S/he is likely anxious; fearful; feels like an object; and is treated like “s/he wouldn’t understand what’s going on anyway!!” 

Rant #6 - Lets Talk About Primary Care

Originally, I was so pleased to find out that our Medical Clinic (the Haig Clinic) was part of the Primary Care Network here in Southern Alberta.

I never thought much more about it until we became thoroughly entrenched in the Medical System.

My first mistake was that I thought a Primary Care System implied that each part of the system has a path, is integrated into, and responsible to the whole.

HUH – was I wrong!!

It seems that the key objective of the Primary Care Network is to ensure Albertans have a place to enter the System – a front door – a family doctor . . . if you please. Theoretically, this is good . . . BUT . . . the doctors at most local clinics are not taking new patients.

Then the doctor refers . . . and refers . . . and refers. 

Communication and follow-up seem to be optional.

Any referral MUST come from the doctor; the staff sets up the appointment with the receiving service and tells the patient when their appointment is.

What would happen if we tried to introduce the patient into this Primary Care Team?

The biggest element missing from the system seems to be the patient. It seems that the more complex the situation is - the less the patient is involved in the process: the process goes on around the patient.

How can they call it a Primary Care system if one part of the system doesn’t know what the another piece of the system is doing – has done – or plans to do?

Rant #5 – Oops is the scariest word in the English Language: The Fear/Panic Syndrome

July – October (2017)

Now what?

The pain in his foot was so bad, he couldn’t put any weight on it . . . Fred thought there must be a broken bone or bones in his foot.

I can’t deal with over 200 pounds of pained weight, so again, after talking to Healthlink (telephone health service) it was a call to 911 and the EMS with a stretcher to take him.

Again a long stay in Emergency and a final diagnosis of gout . . . but the Emergency doctor said he was concerned about prescribing the usual medications for gout because of Fred's kidneys so he tried a very a minimal dose . . . it didn’t work.

A trip to the Family doctor resulted in a steroid regime.

Cricky . . . what next?!

What Next was another visit to the hospital with a significant amount of blood in his urine. This time he was admitted. After more tests that revealed nothing, they thought maybe it was still a leftover from the TURP or irritation from the wrong catheter when Fred had the urology dynamic test . . . another one of those ‘scare-the-hell-out-of-you’ experiences. 

Fred monitored the blood-in-the-urine thing and realized what an issue was and what was not.

Now the gout (the pain and the difficulty walking) and the failing kidneys became the centre of our concerns. The resurgence of the gout pain was continual and once more the Family Doctor prescribed the prednisone.

October 8^th, 2017 – the latest visit to Emergency

An extended (24 hour) stay in Emergency undergoing extensive testing to identify why he was experiencing a muscle spasm in his lower back.

This was the first time we have actually experienced one of the Hospitalist Physicians[1] (and I am still reserving my opinion about their role in the system). We were impressed with the gal who came in to see Fred. (We both commented that she was very different than any doctor we had encountered up to then on our medical misadventure journey: she was very hyper; was not wearing a ‘white coat’; seemed exceptionally concerned about her patients). She was more thorough than any other doctor – it was obvious that she had even read Fred’s file.

She uncovered a potential issue that was noted in January that indicated there should be follow-up! She even called our home the next morning to ensure we understood and were following up which we did. And another Hospitalist called a few days later to find out if we had followed up with our Family Doctor.

When your Family Doctor calls you to make an appointment you can only assume there is something very important.

No doubt!

The Family Doctor admitted that the January report did indicate the need for follow up. 

He commented with a smile, “It must have fallen through the cracks.”

OOPS!

Did he actually read the report???

Whose CRACK was it anyway??

October 19^th, 2017

The scheduled six month visit to the Wong doctor (the Nephrology Specialist that never shared information with us before) resulted in a Medical Rant from him about: how little other medical personnel knew about the interaction of medications with the kidneys; how wrong they usually are; how he had done the tests before Fred left the hospital in January; how he had discussed all the results of the tests with us (like the tests he had done and no concern in regard to potassium, etc) that we did not recall AT ALL.

We heard more from him that day than he had ever shared with us before. [2] 

Needless to say, this outburst relieved considerable anxiety.

We realize that we have been suffering from the Fear/Panic Syndrome.

---

[1] Hospitalists are “Physicians whose primary professional focus is the general medical care of hospitalized patients. Their activities include patient care, teaching, research, and leadership related to hospital medicine.” Society of Hospital Medicine http://www.albertahealthservices.ca/assets/info/hp/cfm/if-hp-cfm-annual-report-16-17.pdf page 12

[2] He did tell Fred his blood pressure was high after just one test and prescribed Coversil – that we questioned because his blood pressure had not been high before.

Rant #4 - And the Misadventure Continues . . .

Were we lulled into compliance or were things really getting more under control?

Our last visit major disappointment came when we visited the Kidney Specialist. He reinforced our discovery that most doctors, especially specialists, were not inclined to understand the concept of communicating.
As we sat anxiously in his office to find out if, what we were doing, was actually achieving anything. He walked into the office with a file; sat down at his desk; opened the file; and told us he would see us again in six months! 

WHAT! 

 Nothing about how things were going or whether we were on the right track or . . . anything.
We were so shocked that we could not even remember what questions we wanted to ask.
Finally I managed to blurt out “What are the test scores? What do they mean?” I commented that when we saw him last he said Fred’s kidneys were functioning at a 18% level. His comment was “I didn’t say that!”
We both remembered that . . . but neither of us could see any advantage to questioning what he said.
Again, he may be a very competent doctor BUT how would you ever know?
Blood-letting (drawing blood) continues at the Lab, weekly, bi-weekly, or monthly to monitor the INR levels that regulate the blood thinner levels and the conflict still arises as to who calls us with the results.
We had thought that because the one doctor was the specialist, it was reasonable to get the results from his office and so chose that option.
For a while, both offices called us (the Specialist AND the office of the GP). Then the call came only from the Specialist’s office; then the GP’s office called wondering why they were not getting the Lab reports.
Apparently, the Lab no longer sends results to the GP but they are recorded on the network.
Oh, I did have a major clash with the nurse about getting the results and getting an on-going OK from the doctor to share the results.
On our next visit, I did ask the doctor about getting the results of the tests. His comment was that he has too many patients to do that.
Okay!
I did ask him who the system was set up for, the patients or the doctors.
His answer to the question was not forthcoming so we did not wait for an answer.

Doctor's Rules Reign!

On June 28^th – Fred retired the on-going Home Care Workers.

Ya-Hoo!