Follow up CT Scan

The good news is, my dad's tumor has no noticeable change.

The bad news is, I am wondering if I made the right choice to stay in CA.  Will have to wait for the weather to warm up before considering it.  Still taking it a day at a time.

Even More Not Great Update

Well, it's official.  Non small cell carcinoma.  I already knew because I had picked up the results, but this was the official doctor appointment day, and finding out about prognosis.  He thinks 6-12 months.  He says all lung cancer is aggressive.  Writing this up to have a chronicle of the right dates.  Too much to process right now though.  Doesn't make sense to go to OR in this scenario.

A Visit from Tammy

My sister and her fiance came to visit for a few days, which was great timing for a couple reasons.  For one thing, my dad's mental state seems to be really declining these days, so this might be her last chance for a really interactive visit.  As it was, he didn't really know who she was, but would believe her when she told him he was her daughter.  Then they would leave to go to the store, and  my dad would say something about "my friends who were just here".  :(

It was also good to get all 3 of us kids together who are in the trust and talk about his upcoming health issues and other things.  Dad was not very participatory in the conversation, but I think it was still a good thing to all sit down together and at least try.  

I have a few photos from the visit, but I can't access my dropbox right now.  Hopefully I will remember to come back and add them.

Really Not Great Health Update

For years my dad said he was afraid to quit smoking because it is what his body is used to.  Now, when he finally has quit, and after a 4 week course of rituxan, his scan not only showed no change in the lymphoma, but a lung tumor has popped up as well.  :(  The oncologist says based on the way it looks in the scan, it is likely to be malignant.  Guess another biopsy it in our future.  Double  :(

My Dad Stopped Smoking :o

This is beyond startling.  It actually happened a couple months ago, but I didn't say anything because I didn't think it would stick.  He has been smoking since he was a child!  In the past, he would buy a carton at a time, and let me know when he was almost out.  Then we would go to the smoke shop.  One day he just didn't ask.  I couldn't believe it.  I went to the store to get him some Nicorette gum, hoping that would help it stick.  I offered him a piece a few times a day for the first few days, then a couple a day, then one.  I gathered up all the lighters so they would not be a reminder.  And the days went on...  At a recent doctor visit, he said he had quit years ago lol!  I am thrilled and relieved.  Although he always smoked outside, he sometimes used the stove to light them and left the gas on once!  Here's to hoping they are gone for good!

Phrasing is Everything (Also Another Health Update)

The stent procedure went well and the change in my dad  has been nothing short of amazing.  He is eating 5 or 6 times a day sometimes and more active than I have seen him in a long time.  Today he had his first dose of rituxan, which had to be done in a hospital in case he had a reaction.  Everything went fine, but I wanted to make a note about a realization I had.

My dad is a classic example of the stoic males of his generation.  He often complains about pain, but when I ask if he wants a pain pill, he usually says something along the lines of, "No, it isn't that bad." So when the nurse at the hospital asked about putting some pain meds in his IV just in case he experienced discomfort, I started to ask if he wanted it, but realizing it was fairly standard, instead I said, "Would you be OK with the nurse giving you some medicine for pain?"  He tends to be an easy going guy and especially compliant with health professionals, so it was no problem.

Must remember this at home when I think he should take a pain pill or do other things in general he is likely to say no to!

The Dreaded MMSE

As part of the comprehensive care that was recommended to me by people familiar with geriatric concerns and dementia, it was suggested my dad see a neurologist.  I was really dreading the MMSE portion of the visit, but wow, it was eye opening.  :(  I know how much my dad is struggling, but he has "work arounds" at home - his calendar, his newspaper, just being in a familiar surrounding. When outside that, things are not so easy.  Some examples...

What day, year, season is it?  He had no clue

Did you take the stairs or elevator here?  No clue

What floor are we on?  Very next question by the way, and the last one sort of implied we weren't on the first floor.  My dad's answer:  I dunno, first?

He asked for a simple series of steps, something like, take this piece of paper with your right hand, fold it in half, hand it back with your right hand.  Not even close.

Can you write a sentence?  My dad signed his name.  :(

The most interesting one was when the doctor asked him to spell "world".  He did that just fine, but then he asked for him to spell it backwards.  He looked totally stumped but tried, and came up with "drw".  Makes me wonder what it is about that task that makes it difficult.  He has enough short term memory to remember what word he is working on, but maybe can't keep a picture of it in his head at the same time?

So you get the picture.  Considered pretty far along dementia by the doctor.  Not a surprise to me, but still sad.  This is not an easy journey.

Health Update

Phew, every time I think I am going to write a health update for my dad, it seems like something new comes up, and I want to keep notes on everything, if only for myself.

So...  in April he had an MRI because he was complaining about bad back pain and would sometimes have a hard time standing up after bending over.  It turned out he has hydronephrosis, which means one of his kidneys is swollen.  Not really sure how this was overlooked while he was under the care of a nephrologist, but we can only go from here.  We went to see a urologist, and he called for an ultrasound and CT.  It turns out there is some sort of mass, which the doctor thinks looks like lymph, pressing on his ureter, which is what is causing the kindey backup.  For his part, he said he could put in a stent to help drain the kidney.  That is a procedure that would be done under GA, and would have to be redone every 2-3 months.  As far as the mass, we needed to see an Oncologist.

One more doctor added to the mix,  :/  The Oncologist ordered a biopsy, and we found out the mass is a follicular lymphoma.  Apparently not dangerous in and of itself but causing functional problems in my dad's case. He suggested a course of rituxan, which is sortof of like a mild, and usually side effect free, form of chemo.

I put the options to my dad, and he just keeps repeating that he wants me to make all the decisions.  I felt unsure about the stent because of the GA, but after talking it over with his regular doctor, he said the stent is a really minor procedure and what he would call a "no brainer".  OK, great, so that is scheduled for May 27th.

I ended up really glad I scheduled it, because my dad's blood work now shows he is dropped to Stage 4 renal disease.  He is also barely eating and sleeping most of the day.  I really think he might be in the early stages of kidney failure.

As an aside, I set him up for more substantial respiratory testing, and his COPD is classes as mild to moderate.  Some good news at least.

That is it for now.  Still planning a visit to a neurologist down the line.  More to come....

Choices

When I was on my way to California from Oregon, I felt really settled in the decision about bringing my dad back to live with us. My husband and I spent hours talking about it and looking at every option we could think of from multiple points of view.  Now that I am here, I am questioning everything again.  I keep thinking of little details that will complicate things and worrying about how difficult it will be.   And on top of all that, my dad’s health is in much worse shape than I realized, so I am questioning putting him through a long move.
For years, he has been telling everybody there is nothing wrong with him.  I knew he was on meds for high blood pressure and high cholesterol but figured those were common issues and well controlled.  His favorite story about his doctor (again, from years ago) has to do with him saying, “Weeeeell, there ain’t a damn thing wrong with you,” and that is the story he has continued to tell.  I am not sure if it started out with him not wanting to worry anybody, but at this point, he seems to really believe it.  Nobody has been going into office visits with him, and he apparently is not cognitively processing what they are telling him.  I knew he had been seeing a kidney specialist, so I asked his primary doctor about that and was completely in shock over the answer I got (see below).  His doctor is not one to volunteer information, however, so it wasn’t until I went to the nurse’s station, while she was making an MRI appointment for him, that I saw his online chart, with a header of his main issues, and was reshocked. Is that a word?  So here is a list of what my dad has going on:

~ Dementia – the only thing I actually knew about.  Turns out he has been on “memory pills”, as he calls them, for several years, so at least it must not be a rapidly progressing type.

~ Renal Disease – turns out his kidneys are only functioning around 20%!  His doctor was very unhelpful at explaining what this means or how this figure is arrived it, so I guess I will be doing some research.

~ COPD -  No idea about the stage.  Not surprising considering his many years of smoking, but now I am worried about taking him to a colder climate…

So you can see where all my confusion is coming from.  The first order of business is going to be having some testing done to get some detailed information regarding these various issues.  In the meantime, I have been talking to several health professionals and people who have been through similar situations, and most of them agree that being with family trumps any other situation we might find for my dad.  And they all agree on one other thing as well: don’t give him a choice in the matter.

The topic of choice is what I actually sat down to write about.  The advice I have gotten goes against everything I believe in when it comes to parenting and unschooling.  My goal is to give my kids autonomy over their minds and bodies in every way that is safely possible.  So why does it have to be so different with somebody who  has dementia.  I guess if you really examine the sentence I wrote, the key words are “safely possible”, which becomes more and more narrow as dementia progresses, but for now, I would like to at least try to find ways to put free choice into action with my dad.  I may think this is incredibly naïve of me down the road, but that is where I am right now.

I do believe people think it is kinder NOT to offer my dad options because he is actually incapable of making a decision regarding things that are complex.  Choices cause him stress and anxiety.  That did seem to be true the one time I brought up his future, during a visit about a year ago.  I asked him what he wanted to do when the time came he needed extra help.  I knew the time was coming soon, but he was in denial.  I gave him some options, like going into assisted living, hiring somebody to come to the house part time or moving in with my family.  The only option he wanted was to stay in his house, but not with a stranger coming in.  I tried to explain that there was nobody available to live with him, but he flat out refused to make a second choice.

Thinking about it more, my dad is not really in the habit of making many decisions.  He has ONE type of pants he likes, down to the color even, ONE type of shirt, eats the same sandwich every day for lunch and the same couple things for breakfast.  In the store, I will ask about trying out some different things, but he always wants to stick with what he is used to.  If I ask about what he wants to eat for dinner, he never answers and just says, “Whatever you want to make.”  He is very set in his ways, so being presented with a complex issue that involves change is probably extra overwhelming to him.

Not really sure where I am going with this.  It isn’t “coming together” like most of my other posts have.  So I guess I will just wrap it up…  For now, I am going to let my dad think we have moved in long term.  And it probably will be somewhat long term.  Once we have some more answers about his health, we can start considering a plan, and I can start working topics into conversation in small chunks.  In the meantime, I will look for opportunities to offer him small choices.  One day at a time, my new mantra.