Computer, Gold, Glasses

Remember those three words...computer, gold, glasses.

In February, I had the opportunity to go to a neurology appointment with my mother-in-law for the first time.  Yes, it's taken a month to be able to discuss that day without extreme emotion.

We went down the night before to avoid having to get up at 5 am the next day.  By the time we got there, she was in bed.  That's noteworthy, because she has gotten into a pattern of going to bed early, sleeping late and napping a good portion of her day.

With her in bed, we were given a rare chance to talk with my father-in-law alone.  During the conversation, he pulled out a newspaper article that was given to him by his daughter.  The article talks about how hydrocephalus being misdiagnosed as dementia.  I tried to read the article objectively, but found no connection between her symptoms and what was listed.  The connection I did make was this steadfast denial that seems to be plaguing the family. 

I let them know I didn't see the connection.  I could tell he was getting a little frustrated with me, while my husband sat silent.  Each conversation led to the same conclusion...he was waiting for someone to "fix" her or make her better.  She has a consultation coming up next month at the KU Memory Clinic and he doesn't want to make any changed in anything until they evaluate her.  He's waiting for them to solve the problem. 

He began complaining about her sleeping the days away and not doing the things she used to do.  He pointed to a cobweb and let us know that you used to not see them.  It took all I had to not lose it on him.  My declining respect for him and my weariness with his denial made it almost impossible to suck those words "maybe you should get off your ass and clean this house yourself instead of going and hiding in your shop" back into my mouth.

Needless to say, I finally gave up on the conversation and headed to bed.

The next day, I woke up to a raised voice coming from the kitchen.  Even though it was still two hours until her appointment, she was dressed with coat and all and pacing the house.  He was already frustrated.  As I headed to the shower, I heard him say "all she does is sleep" to my husband.  I'm guessing she traded pacing for a nap.

If you've never been around someone with a later in life onset of mental incapacity, it's important to understand that they are constantly confused.  They don't know what to do with themselves physically because their minds can no longer communicate and process that information.  It's not uncommon for them to be depressed or sleep a lot because they don't know what else to do with themselves.

While I waited for the appointment, I continued to watch her pace the house and his frustration grow.  At one point, she opened the front door and headed out to the street.  There wasn't anything out there for her and it was cold.  He headed out after her and brought her back into the house.  With a raised voice, he told her to go find something to do. 

During the time I observed, I saw other disturbing behavior.  In an hour, she brushed and curled her hair four times and wet her pants once. 

So, off to the appointment we would go.  We were seeing a neurologist who comes to her regular doctors office.  Walking into the office must have been completely unfamiliar to her because she was lost.  She had to be told what to do each step of the way.  Thankfully, we did not have to wait long.

In the office, the doctor asked her several questions.  She relied heavily on her husband to find the answers.  Without his help, she would have failed miserably to answer any of the questions.  He also gave her the three words that I gave you at the beginning of this post.  Remember what they were?  Can you remember them without scrolling back up and looking? 

She couldn't remember one of them.  There was a computer sitting in front of her and she was wearing gold glasses.  This is one of the tests they use to gauge her memory function. 

The doctor was decent, which surprised me.  Sometimes in small towns, you get what you get and that may or may not be good.  The poor guy definitely has his work cut out for him when trying to communicate with my in laws.  I typically don't think of them as under educated hicks, but they certainly acted that way during this appointment.

They interrupted him with their half-brained ideas of why she had memory loss.  They've been seeing this doctor for over a year.  They suggested that a possible clogged vein near the kidneys, her retirement, her blood pressure, and probably a few others.  The doctor was so gracious to sit there and listen without discouraging them.

They did discuss the amount of sleeping.  He asked about depression, which they both denied.  He asked about routine, which they both acted like they had never heard before.  In fact, he has counseled them many times on keeping her in a routine. 

Probably the most discouraging, yet honest, thing he said was that he does not believe her consult at KU is going to result in anything new that he has not already tried or said.  That's just honest, but not what they wanted to hear.

We, meaning my husband and I, did get a chance to discuss care for both of them with the doctor.  It is completely beyond me why it has taken over a year for anyone in the family to ask these questions.  We talked to him about depression, suggesting that they both might benefit from a mental health evaluation.  We asked for a referral for a support group.  We asked about probability of home health care to assist with meds and daily care. 

It was a surprise to me, that they had been offered home health care previously and turned them down.

The ride home was unpleasant.  It was a lot of heated discussion, mostly him telling her what she should be doing.  Hello....she's not going to remember that. 

Once we got out of the van, we were informed that he didn't need any help and there was no way he would allow a home health aid to come in his house.  A home health aid once worked with his brother who had one arm and a balance problem.  They had him remove all his rugs so he could not trip on them as he was unsteady.  Therefore, a home health aid cannot come into their home because they will obviously force them to remove rugs.  Jeez Louis...there's only 3 rugs in the entire house. 

I'm not going to go into the details of our personal conversations, but I can tell you that it was quite contentious between my husband and I all weekend long. 

I'll probably never be allowed to go to another doctor's appointment again.  It's sad.  I say this with no ego involved, but I'm probably the only person in the entire family who can understand medical terms or who has a clue what benefits maybe available.

Sadly and most unfortunately, nothing has come of the appointment.  No referral.  No support group.  No change in anti-depressant.  It was informative for me to make the trip.  It was heart-wrenching for me to see the denial.  It was disheartening for me to see the growing problem and know I, as an inlaw, have absolutely no input on this situation. 

I suppose I should be thankful to step back and say it's not my problem, but I'm just not that way.