What I Wish I Knew, Part 3

Mom’s appointment that she had was in Oct. of 2015.  They did find a bacterial infection that was in her kidneys or bladder, don’t remember now, but those type of infections can cause memory loss in older people, and after all the years of research and just plain learning from the caregiving groups I have been in, UTIs are much more common in people with dementia because of the lack of remembering to keep clean down there.  The doctor had a follow up appointment for after the antibiotic had time to kick in to see if there was anything else going on.

November of 2015 was her follow up.  Mom was given a cognitive assessment test.  This is a baseline to see where the patient is.  It’s not a way to completely diagnose dementia, but it gives the doctors a starting point to start looking for answers. The most common tests are Mini-Mental State Exam (MMSE) and the Mini-Cog Test.  These two tests, as simple as they are to you and me, show a lot for what they are.  The MMSE consists of questions that test the everyday mental skill.  What I remember of that was the doctor asking her to remember certain words while the test was going on, simple math, and simple geography. The Mini-Cog Test consists of remembering three simple items and repeating them a few minutes later, drawing a clock (this shows a lot in itself), and drawing a time spoken to them. The maximum of points that can be scored is 30.  Depending on the score, it will state how far the dementia is.  Alzhimers Association has more information here on these tests.  Mom scored a 13 out of 30.  She was in moderate dementia and what I learned that day, my heart broke and I knew it wasn’t going to be good news.  Just to be on the safe side, the doctor ordered more urine tests to rule out any risudal infections, blood tests, MRI brain scan, and thyroid tests.  All this just to make sure she was on the right page and nothing was causing the memory issues.  All the other testing took around a month.  December 14, 2015 will be a day that I will never forget.  And also the reason it has taken me a while to get where I don’t have a fear of something bad happening after a good time.

The weekend before that day, my husband and I decided to help a friend of his get Christmas for her daughter.  They live in Houston and only a few hour drive to get there.  We got to her house, talked for a while, and then we took her to Walmart to get her daughter a bike for Christmas.  We had the money and wanted to do some good.  We decided since we were already down there, we would drive another hour to go to Galveston Island.  It was a much needed get away for all of us.  Then, we decided on our way back we would go stop at NASA (which is amazing and I want to go back).  We got back late Sunday night, and on that day, a Monday, I would our with our roommate paying bills and my phone rang.  I saw the number and my heart sank.  It was the doctor on the other end telling me that all her tests have come back negative for anything and her diagnois was dementia.

That moment seemed like a bad nightmare I couldn’t wake up from.  I was in the middle of paying the bill when the doctor told me and it was everything I had to keep it together while I finished.  I pulled off into a parking space after I was done and broke down.  I was really glad my roommate was with me because being alone would have really sucked.

Mom had an addiction to Diet Coke.  Dad and I tried to get her to at least slow down, but there was nothing that was going to stop her.  She also had been on several medications.. Lipitor (water retention), Metformin (type 2 diabetes), Glucophage (type 2 diabetes), Lisinopril (blood pressure), and Lipitor (cholestrol) were just a few of the medications I remember her being on.  After doing some research, I believe some of these medications also had something to do with her developing dementia because of the long term side effects.  I knew about the aspartame in the diet drinks caused memory loss.  But after doing some research after mom passed, I found that Lipitor, really any statin, has had a long term side effect of memory loss as well.  More information can be found here.

Now, I know that these are not just the only causes of dementia, but these are the reasons I believe mom developed it.  In the following days, even weeks, I was in a state of shell shock.  It was extremely hard being the one to tell mom she had dementia.  I mean, how do you tell your mom that she is literally losing her mind and going to die.  This is the moment I wished I wasn’t an only child.  Yes, I had my dad, my husband and my son with me, but I had no other family help.  But, even at the beginning, my dad was in severe denial about the whole thing.  I tried to tell dad that she was going to die from this.  Its not if, its when.  No one knew for sure.  There are people who have it for a few years and pass.  There are others who have it for 10+ years.  But, the result is all the same.  Death.  I was having to help mom with her medications and looking back, I think I can see when the switch flipped and her decline started.  Mom use to cook all the time.  Then it got to a point where it was only special occasions, then just quick box mix desserts, then nothing.  She use to crochet and knit.  Then it got to where she did less and less.  She said it was her arthritis, but yet, I have a feeling that dementia was setting in when she stopped because she couldn’t remember. Same with cross stitch, embroidery, and any other sewing she did.  She got to where all she could do was color.  She loved it and it helped her keep her calm.  Then, it got to be to much for her.  All she could do was sit and watch tv.  And even at that, the tv remote became confusing for her.  There were many times when I would get up and realize she was just staring at nothing because she couldn’t turn the tv on.

Dementia starts slow and we often think its just old age.  It does start the same to a point.  Slower reactions, more need of a memory jog, decreased attention are all parts of getting older, but when it comes to getting lost in familiar areas, not being able to find the right words (that was a huge red flag for me when I started noticing changes), repeating themselves (I saw that in the very beginning) and they not even realize it.  Those are the signs everyone should look for.  Its a scary place to be when you are realizing there are changes and those changes are not your normal aging.  Here is a more indepth look at the differences of aging and dementia.

The things I wish I knew then, that fortunately I know now, was the amount of energy required to deal with dementia.  Going back to when I was taking care of a lady who had dementia, it was straining.  But I was only there for a few hours a day.  I had to help her husband with laundry, dishes, general cleaning, took him grocery shopping, her baths and getting dressed along with physical therapy exercises to help her stay mobile.  I didn’t have the mental and emotional part of the job like I did with taking care of mom.  There was no doubt that I would take care of mom when the time came.  Mom took care of me when I was at my worst when I was a baby, and even into my adulthood she took care of me when I needed her.  She took care of her mom, I took care of my mom, and I pray my son takes care of me.

In the year and a half of mom having dementia (before the cancer diagnosis), I did the best I could.  My family moved into my parents house so I could take care of her easier.  I cooked more, tried to feed them both well.  I also took mom to her appointments, made sure she took her meds, helped her get dressed, and just listened to her cry in frustration that she couldn’t do what she use to do.  During this time, we had also bought a 5th wheel trailer to stay in so we could have our privacy, yet stay close to mom.  Not only did I have to deal with the everyday things of caring for mom, but in April 2016, we had a major flood event.  The back room that we were in flooded with about a foot of water.  It came up and down pretty quick.  But the aftermath was insane.  It had mud and more mud and more mud.  We were lucky in a way though.  When we bought the trailer and got it home, I started immediately getting things in the trailer. Right after I got all the stuff out of that back room, it flooded. I needed the space I guess you could say, but it was also nerve racking not knowing what was going on at all times, even though dad was in the the house with her.

The first couple of years was a breeze considering what the next 9 months brought. The C word… cancer.



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