Zen and the Art of Repetition

I realized very early in my time here I was going to be doing alot of repetitive listening and answering. Like many people with dementia, my dad will often ask me the same question over and over.  Instead of letting this irritate me, I decided to think it through from a zen perspective.  What is it about repetition that bothers most people?  He says something, I listen, I respond.  Would it not be annoying if he had asked something else, if it prompted a different response?  They are just words after all.  I got to thinking if I could just be in the moment and pretend like it was the first time he asked, it wouldn't bother me.  Hey, guess what?  There's that mindfulness thing again!

So I did what I do and went looking for quotations.  It has become a fun sort of break while thinking about different topics.  The above one is a zen classic.  I could get into some pretty dark humor regarding my situation, but I think I am not going to go there! The interesting thing that came out of this exercise is that I stumbled on some images related to chanting.  That really got me thinking - chanting is a spiritual process, and it is essentially the repetition of the same thing over and over.  Hmmmm....

What if we could think of repeating ourselves as a gift?  If all life is sacred, if we are all divine, then maybe all our sounds can be the name of spirit. Why not?  It is all perspective.  My dad probably asks me what day it is on an average of about 30 times per day.  Maybe I will try saying the word each time with reverence.  The day of the week is the perfect place to start.

 Don't get me wrong, I am not always patient about this.  In fact I tend to write about the things I am most struggling with, trying to see things in a fresh light.  Things with a one word answer are the easiest for me.  The things that require a longer answer or when the first answer leads to another question can start to wear on me.  I am OK most of the time, but sometimes I am in the middle of talking to the kids or some other situation when I can't answer him immediately.  I have a general rule of thumb if he asks a more complicated question around 5 times in about an hour, I will get out a paper and sharpie and write a single explanation for him to look at.  Usually the topic will be something about his health condition or why he is seeing a certain doctor.

It is a dance, as usual, around what is my highest ideal and what is possible in any given moment.  The dance of the sandwich generation.  Hey, I want that to be my logo - a dancing sandwich!  Wait, I guess I am what goes in the middle - maybe a dancing tomato slice, or piece of lettuce lol!  OK, I am losing it.  Signing off with this helpful advice:

Living Like This Shouldn't Be a Bad Thing

Like my stickfigure family?  I decided to include Sarah and Champers because they are here quite often. My dad isn't using a cane, but it seemed like the best way to portray an elderly member, and he probably should be!

So...  something has been on my mind lately.  While writing my post about feeling homeless, I spent time thinking about how people who live with their parents are often portrayed as "losers".  I know I am not here because I don't have other options, and it only comes up for me now due to my past baggage, but it also seems like the flipside has a bad reputation.  Whether you are bringing a parent into your home or temporarily living with one to care for them, it is usually seen as an inconvenience - a cause for jokes at best or a horrible stressor at worst.  But in many cultures, multigenerational living is the norm, and I believe there are many benefits from this situation.  Grandparents can often be the perfect caregivers for littles while mom and dad are out hunting or gathering (and yes, this is still pretty much what we do if you think about it symbolically.) Many of them love to tell family stories or can pass on knowledge of "the old days".  And elders have a unique sort of strength and wisdom which can be imparted, which often goes along with a certain "who gives a fuck?" attitude about what people think and deep sense of who they are.

Of course it isn't always this way in our culture.  Some of our elders are full of bitterness or regret, possibly even abusive or toxic in other ways.  Some of them are gravely ill and don't have much to give back, at least in the form of childcare.  We don't live in tribes any more, and that is the problem. While it might not be practical to have everybody jump into a commune tomorrow, I think we all need more community support.  I don't have any magic answers about how to make this happen, and I think it would look different for different people, but I think as a culture this is something we need to both seek and promote.

Sometimes the house is as full as my stick figures represent.   Or sometimes there are other relatives or friends visiting.  Those are the good times.  I can run to the store as many times as I need to.  Forgot the butter?   No problem to run back out if the kids don't want to go. My back goes out so badly I can't walk?  Somebody else can prepare food.  (And yes, that did happen to me when I was the only competent adult here.)  But more than half the time, it is just me with my two kids and my dad.  And I am not going to lie - it is hard.  It is hard to meet the needs of everybody, hard to keep up with the cleaning and laundry, hard to get all the shopping in when there are certain things we can only get at about 5 different stores, hard to prepare food for people with different tastes while considering food allergies, hard to make it to multiple doctor appointments and tests when you have kids that don't want to go, just hard, hard, hard when you don't have a tribe around you.

And yet...   I look for the positives.  I take joy in the times my dad runs around playing hide and go seek with the kids, even if he sometimes forgets  he was looking for them if they hide too well!  I cherish his old stories and work on recording them.  I spend time scanning old photos, thankful I have this opportunity to do so.  I go through cupboards and drawers, marveling at the old treasures I find. And most of all, I am filled with gratitude when I do have a fuller house and I send my wishes out to the universe that all people may find their tribe.

Validation Therapy

Well, so much for getting a post up at least once per week.  Things have just been too intense here.   I looked around for Sandwich Generation blogs when I started this project, and I wondered about the lack of them.  Now I know the truth.  It is practically impossible to carve out time for something like this.  There have been good times and bad times.  I am learning a lot about caring for my dad - what makes him happy, what triggers him and more.  I am including a picture I took at a Mexican restaurant we used to frequent in Chatsworth.  We were on our way to visit my mom’s grave.  We had a party for my dad at this restaurant for his 70^th birthday and the reception after my mom’s funeral was there as well.  He does not remember the restaurant at all but is always happy to have Mexican food.  None of it is ever as good as the food his mom used to make, when she was cooking for a Mexican restaurant, but eating there brought out another funny detail from the past.  He said his mom would never allow alcohol to be sold at their restaurant, but nobody cared – they would just go get drunk somewhere else and then come there to eat! 

I have to keep reminding myself that this blog is a worthwhile way to spend my time, because I find it therapeutic and because I know I will be glad I can look back on this time later.  Who knows?  Maybe parts of it will even help somebody else in the same situation.   I would like to write a basic update post, but first I want to talk about this article I read a few weeks ago now, because I have been wanting to post about it ever since.   Turns out I wasn’t finished thinking about it, and needed some more pieces to put it altogether, so the timing is perfect now.

My journey of learning about Validation Therapy, pioneered by Naomi Fell, started with this article. 

Throughout my life, there have been moments when I am sure I must have heard something in the past, but I didn't really get it.  Then I read it again, and something about my current life experience makes it click.  This is a perfect example.  I am sure I have read that people with dementia live in alternate realities some of the time, but after reading this article, that concept really hit home.  My dad is not at the point he is ever totally out of touch.  There are memories he has lost and things he doesn’t understand, but I haven’t seen any odd “additions”.  Reading about somebody who was convinced he got a medical degree was eye opening.  That would have been a huge chunk of his life!  Even now, as I was writing this, I started to use the phrase “making things up”.  No!  Not accurate.  These ideas are quite real to them in the moment.   I had mixed feelings about this article.  While I liked the idea of not constantly correcting an elder if they are saying things that don’t match reality, there was something about the lying that didn’t sit right with me….

So I decided to delve into the actual Validation Therapy website, and indeed I found out that Naomi Fell never advocates lying and recommends avoiding redirection as well.   There are ways to validate what somebody is saying without actually agreeing with them! Reading through her principles, it was so much like everything I believe about parenting.  Behavior that seems maladapted is usually some sort of a cry for help or a way of expressing a need.  There is a good overview here.  She believes that people with dementia are aware they are wrong about what they are saying at some level, and if you agree with them, you erode trust.  I have seen this idea debated – whether or not people with dementia are capable of forming lies.  From my experience so far, I can easily see how people could feel passionate about either side of the argument.  I will go more into this below.

The part of the article that spoke to me the most, regarding my dad, was the idea that behaviors can be an acting out of unresolved issues.  Over the last few months, my dad has been telling me his dad never loved him.  He has never spoken about this before, so knowing he is thinking this at the end of his life is totally heartbreaking for me.   He also talks about some of the children from his first marriage, and how he feels like they rejected him.  I don’t know that things like these can necessarily be resolved, but it certainly gives me information about what is going to be one of his most basic needs and why he feels so triggered by some things.  There have been times my kids were in a bad mood and have scowled at or not responded to my dad when he talks to them.  He gets so upset when this happens and takes it totally personally!  Again, there is a theme here of “feeling” unloved.  He will usually say, “Why do your kids hate me?”  I assure him that we all love him and that they are mad about something else.  Of course everybody needs to hear “I love you”, but in my dad’s case, I think it is even more crucial.  He has told me his dad beat him over things that were trivial and that he hated him.  L  I am glad he was able to talk to me about this now, while he is able to, in case he gets to a place where he can’t.  I am guessing I will see some behaviors related to this if he progresses into later stages of dementia, so knowing his feelings about it will be invaluable.

I think it takes a fine tuning to sense what is going on in people with dementia.  Naomi Fell talks about disorientation and malorientation.  When something clearly is carrying that sort of heaviness, it makes sense to look at what lies underneath.  Actually, that is probably always a good idea.  The man who thought he had a medical degree?  I sense a need to be recognized or a need to feel worthy or helpful.  Maybe all those things.   Are people with dementia aware they are speaking falsely?  I am trying to work that out right now.  If they are really in an altered reality, it seems like that would be a no.  I am pretty certain my dad is absolutely convinced of many things he says that I know are untrue.  Other times, as in some of the examples on the VT site, it seems like the person really may know they are making false accusations.  The amazing thing is how validating people in many cases actually facilitates them  coming back to reality!

Writing this, I realize why I had a hard time accepting the premise that people know the truth somewhere deep inside…  In the past, everything else I have read with a similar premise was used in a really shitty way.  The person was accused of being mean spirited, manipulative, etc, and the behavior was seen as an excuse for the caregiver to walk away and not tolerate it.  Like many ideas, this one can be used for ill or good.  And the path of good when caring for an elder with dementia can be exhausting.  Again, I am reminded of parenting.  The time you invest in validating, which seems really difficult and time consuming in the moment, will pay off in less time spent dealing with maladaptive behaviors in the future, and a happier human, which is of course the more important goal.  The idea is appealing to me, whether it ends up bearing scientific weight or not.  Of course I am a very spiritual person.  I find myself thinking it could be argued that damage to certain areas of the brain makes it impossible for people to distinguish their delusions from reality, but is it possible to “know” something from a place of spirit?  I like that idea.  I am going to stick with it for now.

Coming back to the first article, I find myself wondering if there is ever worth in joining somebody with dementia in their false reality?  I am not sure of that yet.   One of my dad’s “truths” is that he is in excellent health for his age.  I am trying to convey some of his medical conditions to him, so I can find out how he wants things handled, since I don’t have POA yet, but the idea of letting him think it is all “just old age” has its appeal as well.   He also thinks he is “set for life” financially, which I am finding out may not be true depending on how his chronic conditions progress or what else might come up.  He wants to give all his money away to his kids because he thinks he doesn’t need it, so I am at least trying to get him to understand his insurance is not as unlimited as he thinks it is, but at the same time, that idea is causing him much worry and agitation. 

All I can do is look at every situation and make the best choice I can in the moment.  Sometimes that may be redirection if my children also have needs at the same time.  Sometimes it may be agreeing with him, even when I know he isn’t right, if I really believe he can’t comprehend the alternative.  And just like I have not always made great parenting choices when I look at them in retrospect, or when I am triggered, I am finding myself thinking I could have handled things better with my dad on a daily basis.  Practicing really good validation is hard.  It requires a lot of centering, empathy, total presence – not easy to do if you are a Sandwich Generation caregiver. 

I recently listened to the song Landslide with totally new ears and cried my eyes out.  Can I handle the seasons of my life?  I don’t know.  But what does not handling it mean?  I don’t know the answer to that either.  Not pretty to think about.  Just keep taking it one day at a time.  (How many times have I said that now?)  My dad is more and more talking about handing me all the important decisions about the big things.  And I just keep answering, “I’ll do the best I can.”  That’s all we can ever do, right?  And try to remember, it is enough.

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.

Homeless Panic

Pretty much looks like a home, right?  That's even my van in the driveway to prove it!  And yet, I had a moment of “freak out” during my first week at my dad’s house, having to do with the sense of being “homeless”.  Sure, it wasn't rational, but there it is. The thought that really set this whole thing off was picturing Ron back in OR, moving into a small apartment near his work, which triggered me to feel like we had nowhere to go back to if living with my dad didn’t work out for some reason.  Irrational again, really.  Our family has stayed in smaller hotel rooms than Ron’s current apartment.  I would not want us all to have to live there very long, but we wouldn’t be HOMELESS.

I think the more important question is: why doesn’t this feel like a home to me?  There are a couple things (and probably more I am not fully conscious of) that play into this issue.  

The first one is pretty simple.  I don’t *want* this to be my home.  I don’t like this city.  Ron hates it even more than I do.  It’s hot, it’s dry, there is an overwhelming lack of things for kids to do, it is overwhelmingly populated with conservative types, and there is not another unschooling family for miles.  Just a couple examples - there is not a single public year round pool anywhere nearby and the closest miniature golf is about 45 minutes away.  Ron’s dislike is compounded by knowing it would be 99% likely that he would end up with a job in LA, which would mean long and bumper to bumper commutes if he were to relocate here.  Not much in life he dislikes more.  Besides, he already has an amazing job in Oregon he loves.

The deeper issues have to do with a brief time in my life I lived here, after a particularly sad break up.  I had been living out of state, so I really needed a bit of time to find a job and place to live when I got back.  Just proceeding the move, I had been engaged and thought I had the perfect relationship, only to have the guy end it out of the blue (or at least so it seemed to me.)  I felt like a complete idiot and failure,  and was totally questioning my ability to read people.  And going to live with my parents?  Wow, double failure.  It shouldn’t seem that way, being with family, but that is a huge message in our culture.  Value independence over all! 

So yeah, subconsciously I think being here brings back a lot of memories of feeling like a failure. 

Which leads me to ask, what makes a  house a home?

When you look up the definition of "home", the number one line simply reads: the place where one lives permanently, especially as a member of a family or household. Welp, already I guess I have an issue with that one, because this isn't permanent.  Ah, the feeling of impermanence, that could definitely be part of the mix.  And it also happens to be one of the essential doctrines of Buddhism.  Something worth exploring more methinks….

When I searched for images of "home definition, the most common thing you see is some version of this:

A place were one lives - I am OK with that. Together as a family - check, at least partially.  When a part of your family is missing, does it still count?  Affection, joy and happiness?  Sometimes, but asking myself this also highlights just how much lack of joy and happiness I have been experiencing in my head.  Refuge, resting place, security, protection?  I guess, I mean it is a roof over my head and the place I sleep.  Where friendships flourish?  Ha!  Have to laugh at that one.  I guess I could be out looking for new friendships in this area, but I don’t really have the time and feel sortof "why bother" if we are planning to be gone by the end of summer.  And the closest friendships I do have aren't being helped by long distance That bad attitude is all on me I guess.

This was by far my favorite definition:

Now that sounds like my home.  :) 

But all this aside, I think I would be happier and healthier if I do consider this my home.  So what does that mean for me?  Being with my family is uppermost of course, but after that it is about STUFF.  Not the most enlightened way of thinking I will freely admit, but such is my nature.  I am a visual person and like seeing things around me that represent what is important and meaningful to me, that represent who I am.  I also like things to be arranged in a pleasing way.  If you know me these days, you will probably find that hard to believe lol.  Most of my spaces look anything but pleasing due to being buried in chaos.  As it so happens, I am also OK with letting that go in favor of other priorities, but it is always in the back of my mind, and I know I feel happier in an environment I like looking at.  So maybe that should be a much higher priority.  I do the best I can.  As long as I have a few small spaces I can look at and feel connected to, I feel like I can maintain my sanity. 

When I first got here, I planned to have one altar area in the bedroom, but I soon found out I had brought way too many things.  What a surprise, not.  This discovery actually turned out to be sort of a good thing, because it has inspired me to work my things into other areas of the house.  I feel good about this, like I am making the whole house my home instead of just one small space.  I don’t think we will be here long term, but in the meantime, it is worth it. 
For example…

Many images of the divine mother energy. 

Which left me with this in the bedroom:

(the boas are leftover from Sarah lol)

Still a bit cluttered for my taste, but it will do.  So…  home sweet home, for now at least.  I think this reflection is part of mindfulness for me as well.  Be present in the moment.  If I see my body as my home, then anywhere I happen to be is home.  I can create a beautiful altar in my mind’s eye.  But how often do I have the luxury to sit in meditation?  Ha!   I do much better with the mindfulness of being present with daily tasks.  And having lovely things to rest my eyes on for a moment here and there enriches that practice.  OK, I am in danger of jumping into a whole new subject here, so I need to wrap it up…

As I come to a close with this subject, I would like to commit to expanding the process I use for moving meditation.  Instead of only, “Now I am putting a plate in the dishwasher, now I am putting a bowl in the dishwasher,”etc., start to include, “Now I am looking at the Om chime in the window”.  Pause, “Now I am taking a deep breath.”  Continue. 
Or…  to be continued….

Phone camera would not focus on this in the window, so I moved it to the wall to get this nice clear shot.  :)