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.