The Long Drive to Our House

 

First of all let me make clear that when I moved Mom in with me I knew absolutely NOTHING about Dementia.  All I knew was that her Geriatric Physician had told me that she could no longer live alone.  Me being me said, ok, lets go home and pack a bag and we'll figure the rest out later.  Thankfully Jeff had gone with us because I don't know if I could have handled this alone!  When I told Mom that we needed to get some clothes together and that she had to come with me, she was not happy about the situation.  She tried to tell me that her doctor was just kidding and that he was always joking around.  I assured her that was not the case and that we had to do this.  She reluctantly agreed but didn't really help me pack her bag or get any of her clothes together.  I didn't have a clue what would fit her.  She had clothes everywhere in both of the bedrooms and she had sizes from 10 down to size 4.  Some of the clothes were old enough that I couldn't read the sizes.  Some I had bought her over the past year since she had lost so much weight so those I knew would fit her so those I grabbed up immediately. I picked up her makeup, toothbrush, toothpaste and medication as well as we were on our way.

It was a long drive to our house.. around 2 hours.  When we first left the house, she seemed fairly normal.  During the drive, I stopped at the Dollar Store and ran in while Jeff and Mom stayed in the car.  There were just a couple of things that I wanted to pick up for her and I knew it would be a quick in and out.  When I returned to the car, she was more confused than ever.  She didn't know where we were going and seemed a little bit confused by Me again.  I knew there had been a change but I wasn't sure what caused it.  I can remember the uneasy feeling about this scenario and wondered how I was going to cope with all of this confusion.  It only got worse from there....

When I pulled up to the house, Mom didn't remember my house or think she had ever been there.  She insisted that I wasn't her daughter and she didn't know me.  She even had me call my aunt so she could ask her if she knew that she had a daughter and how long she had known!  Then she didn't believe that my kids (her grandkids), were mine.  In particular, my oldest son, Trent, she seemed to know but didn't think he was mine.  This whole time I argued with her about it all.  How could she not know me? What did she mean Trent wasn't my child!  I told her I had his baby book!  She responded, anyone can have a baby book!   Then she asked who my father was and although she knew his name, she still didn't believe I was their child.  I can't begin to tell you the feelings that were running through my head at that time.  I knew that my Mom and Dad divorced when I was only a few months old.  Maybe she never wanted a child.  I was probably a mistake and she didn't want to remember.  It is amazing the things you think of in that situation and especially since I had absolutely no knowledge about Dementia!   I was frantically trying to find pictures to prove to her that she was my Mom!  I now realize how crazy that all was.  I was doing all of that for my benefit because it was only causing her more confusion.  During this journey, thankfully we learn things.  It was all thrown on me so quickly but really there were signs that I just hadn't seen. Thinking back, at least she was able to live in her home for much longer due to my ignorance.  I know that in hindsight it was super dangerous but it is what she would have wanted so at least for that I am grateful.  

Confusion about Medication or Missing Medication

 

This picture is from May 2021 when I drove Mom to meet up with my granddaughter, Christine, and her great-granddaughters Taylor, Laken, Blakely, and Emersyn.

I'm sure I'll randomly go back to things I missed.  One of them is the problem with confusion about or missing medication.  I had learned when I began visiting my Mom each week that her medication was confusing her. There were even a few times when she would call me with back pain and be so upset about her pain that I would have to go there immediately and pick her up to come stay with us for a few days.  She has back pain from time to time when she is up too much and doing more than her normal amount of activity.  My aunt told me one of my Mom's new tricks was to get down on the floor to pick up fuzz off of the rug.  This was constantly causing back issues for her.  I decided I would buy her a super light stick vacuum that she could use rather than bending down and picking at the rug.  It seemed like a great idea to me but I doubt she ever used it.  It's funny how we try to come up with solutions based on logical thinking and not realizing that her brain was no longer working that way.  She continued to bend over and pick at the rug.  She continued to have back aches.  She continued to be confused about where her pain medication was.  

At some point during my visits, I decided that I would take over filling her daily medication box for her.  That way she would remember that she had taken her pills, right?  Each week I would fill her pill box out for each day and then I would leave out just the pain pill bottle that she used for her back aches.  Sometimes when she had pain and would call me, I could talk her through taking two of the pain pills.  Other times it just seemed not to work and I would end up having to drive over there.

Above picture is Mom and her cat Darlin' at her home in Hartsville. She could never remember that poor cat's name.  I would have to remind her of it often during our phone calls or visits.   You could see she was starting to look a bit disheveled.  I'm sure that is something else that I guess I should have recognized.  

Upon my visits, I would fill her pill box and I often found that she had taken medication for other days.  So if I had filled it on a Friday the week before and had come the following Tuesday, she should have still had medication in the slots for Wednesday, Thursday, and Friday but some would be missing.  It turned out that this was happening because she would go to bed at 4pm, and wake up at 7pm thinking it was morning.  She would put on coffee and take her medicine.  Once she turned on her TV, she would realize it was evening and she would go back to bed.  The next morning, her medicine would be missing so she would either skip it or take the following days medicine.  I realized this the night I stayed with her all night so that I could drive her early for blood work in the following morning.  One of her medications was blood thinner and should have been monitored so that she was not taking too much of it.  I left so stupid once I realized this.  Maybe my aunt could come down in the morning and help to make sure she had taken the correct days pills.  The problem with that was Mom had been so Independent and didn't really want her down there and all up in her business.  To be honest she probably didn't want me all up in her business but I'm pretty stubborn when it comes to making sure she did the right thing.  I'm not sure if this was a fault or a talent but I was certainly determined!

Roses and Rye - My journey as a Dementia Caregiver

 

Roses and Rye.  Roses are more beautiful but there is a purpose for the Rye as well.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose. (Romans 8:28)  So I will smell the roses, embrace the rye, and be careful to avoid the thorns, although I know they are part of the roses.  Some days that is the best that I can do.

As I sit here watching my sweet Momma sleep on the newly delivered hospital bed, I am thankful that God chose her as my Mom.  I couldn't have been an easy child to raise.   I grew up as an only child to a divorced Mom in Memphis, Tennessee.  I know there is a theory that only children are spoiled.  I was not one of THOSE only children.  My Mom could not afford to spoil me with the meager child support she received from my Dad.  Although I was not spoiled, I will admit I had a healthy dose of selfishness that must have been inherited from my Dad because my Mom was never selfish!  I will admit over the years my Mom's giving nature has certainly rubbed off on me and for that I am forever grateful!  

I tried to think back to the first time that I realized there was a cognitive issue with my Mom.  My guess is that it was in 2020.   I live in Manchester, TN, and at that time my Mom lived in Hartsville, TN, which is about a 2 hour drive.  Although I didn't get there often due to the distance, I talked to my Mom every single day.  One morning on the way to work Mom mentioned on our morning phone call that she was unable to watch more than one channel on her tv.  I asked if she had a remote control and she said no and that she only had a box that she talked into.  She had recently changed service providers so I felt like I needed to leave work that morning and drive to her house to check out the situation.  I felt surely I could contact the provider and request a remote control.  After checking my morning emails, I headed to Hartsville to survey the situation.  The "box" Mom talked about talking into was in fact the remote control.  Although it included a microphone that you could request a channel selection, it also included channel up and down arrows as well as volume up and down arrows.  I was surprised and somewhat perplexed that she didn't realize she had a remote control but I wrote the situation off as an elderly issue with technology.  In retrospect I wish I had realized that the situation was much worse.  When I think that she lived alone for two years and many more episodes after that, I feel guilty.  Is that what every person with a loved one with cognitive issues feels like?  I should have known.  I wish I had known.  

I had provided Mom with a cell phone for a few years.  She lost her phone a few times and I had bought her new ones.  I guess those should have been signs as well.  Even when she knew where her phone was, she rarely had it charged.  I decided with her being older and her grandkids all living out of town that I should get her an IPAD.  I bought her one and brought it over and set it all up.  I went through several training sessions and had numbers programmed in so that it was just a press of a finger or two and it should have been easy.  I left her house convinced that she could do it.  I tried to Facetime her 10 minutes after leaving her house and she already had no idea what buttons to push and how to even answer an incoming Facetime call.  More technology issues I thought, even though I had written down step by step instructions.  

Meanwhile Mom had lost a lot of weight.  She was down to 83 lbs. from 105 lbs. just a few years before.  I decided that something had to be done to get her weight up.  This was in early 2021and right around the time that I retired from my position as an Import Supervisor at a Retail Chain Store.  I started going to her house at least once a week and often two or three times to make sure that she had things that she would eat.  Her Geriatric Doctor suggested that we supplement her diet with Boost or Ensure to help put some weight on her.  Each week my trip to Hartsville included stopping for her Chocolate Boost or Ensure as well as making sure that she had plenty of Strawberry Cream Cheese Toaster Strudel, her breakfast of choice!  Once I arrived at her house, I would inventory her food supply and make a local store run to pick up coffee, peanut butter, bread, or anything else she needed.  I did a major refrigerator cleaning and would continue to clean it out as needed each week.  I couldn't imagine how she let her refrigerator get in such a mess.  I also discovered during my weekly visits that she was having some issues forgetting to write checks so I told her I could do that for her.  Thankfully she had added me to her checking account years ago after a hospitalization.  

Upon taking Mom to a Doctor's appointment later in 2021, we found that the calcium levels in her blood were very high, which was an indication of a parathyroid problem.  One of the symptoms of parathyroid disease was confusion.  Wow... I thought that was the answer.  She needed to see a specialist and possibly have surgery to remove the diseased parathyroid.  Certainly this would help her! Thankfully since I was retired I could take her to all of the Specialist appointments.  In late 2021, we were finally able to get her scheduled for Surgery.  By then her confusion was even worse.  When I took her to the hospital for her Pre-Admission Testing I overheard them tell another lady that she would have to go back by herself due to their Covid policy.  I was already beginning to worry about that.  Sure enough Mom had to go back by herself and I let the nurse know that she may not be able to answer all of her questions and that I would be in the waiting room if there was an issue.  It took all of 5 minutes for her to come back to get me.  When I got back to the examination room with Mom she said that she told them that her sister was out there and that the nurse wanted to know if her sister was older or younger but she couldn't remember.  Whew... that was scary.  I told Mom that I was her daughter and not her sister so I was younger.  She didn't really indicate that she knew or didn't know if that were true.  After the surgery, she was even more confused.  That immediately scared me but I thought maybe it would just take a little time before things became more clear.  She stayed with me a few days before and after the surgery but quickly just wanted to go home.   We agreed but relied on my Aunt, who lived down the street from my Mom, to check in on her to be sure she was ok.  

In early 2022, my world changed.  It was a couple of months after her surgery.  Mom needed to have bloodwork done so I spent the night with her to take her to the Lab early the next morning.  I noticed after she went to sleep the night before that she woke up twice thinking it was morning when it was still evening.  Thankfully I was able to stop her from taking her morning medicine.  This explained while she appeared to not have as much medicine as she should have had.  That morning on the drive to get her bloodwork done Mom pointed out a house that she used to live in and told me that she had lived there.  Of course I knew where she had lived as I moved her into the house.  I asked her if she knew who I was and she said no!  I am her only child and she doesn't know me!  How can this be??  She had her surgery!  I left that day devastated that my Mom didn't know who I was!  A few days later when we went to her Doctor's appointment and I told him that she hadn't known who I was, he told me at this point she can't live alone.  My Mom had been such an strong, independent lady and now she had no choice.  She had to move in with Me.  Lord help us!!!