Saturdays with Mom

Having a vacation day from work with nothing important pending is truly a blessing.  That’s how this Friday began but as usual, things don’t always turn out as expected.  The unexpected can be an adventure and is usually a lesson is being flexible with God’s plan.

I was in the checkout line at Walmart when my phone rang.  I usually don’t answer numbers that I don’t know but decided that I would answer this one.  “Hello” I said.  “This is the Carrollton Police Department, are you Deborah Petersen?”  It is truly amazing how many thoughts can race through your brain at a moment like this.  Did I not pay a ticket, no I haven’t had a ticket in 10 years. Did my house burn down among many other thoughts.  Next they said, “Is Evelyn Toth with you”  (that is my mom who has severe Frontal Lobe Dementia)  My mom has a cell phone that I pay for her and she keeps a piece of paper with my name and number on it and she uses it…often.  Some days she calls me 10 times and we have 10 minute or more conversations that consist of the same 3 sentences over and over.  Her words are becoming less logical and she might say Are you now lighting?  Are we getting bricks?.  Well, she has now reached a new level of brain malfunction and she called random numbers and reached the front office of an elementary school in Plano Texas.  Well, they were so concerned about how this woman was speaking that they called the police and from there the police tracked that her address is mine, tracked my phone number and there we have it.  It really is precious that they cared enough to try and get help for someone they didn’t even know and these are the regular folks in the world that deserve to be called hero. So, now I let them know that she is safe in a memory care home in Dallas and guess what… they now have to go by and do a welfare check on her.  So, I hurry home with my purchases, put them away and rush to the home.  The police officer’s are kind and understanding but let me know that is might be time to take the phone.  I agree and now I’m left feeling sad that she just lost another precious ability and happy that I don’t have to field 10 calls a day.  Happy that I now have more money in my budget and sad that I think she will begin to forget me now too.  There is a phone at the house, so I can still call and speak to her but it won’t be the same.  I decided since I was there we should go to Whataburger and she really enjoyed it.  She noticed her phone was missing from her room but didn’t make a fuss about it.  On the way back from Whataburger I said “Jesus is so good and loves you Mom” She exclaimed oh yes Jesus and raised her arms in praise.  These are the moments I live for, when she has a moment of clarity and remembers something she had previously forgotten.  This journey takes me down different paths each week.  Paths I don’t want to take but God has different plans and I’ve noticed through my life that his paths tend to have better results if I just hold on to His hope.

Saturdays with Mom

I wish I could wake up everyday like I did yesterday.  I suppose it would be true to say that I could, it is a decision, but I’m not there yet.  I did the things that I knew would help, put on worship music and soaked in it.  Even tried smelling the Joy oil…  Sometimes, I dread my visits with mom.  When I walked in they said she had an upset stomach.  We went to her room, after about 50 kisses and got her sweater.  Watching her eat french fries is truly odd, she looks through the fries and tries to find 4 that are about the same size, she then tries to eat all four at once.  It is truly and experience to watch her eat.  When she picks up her whataburger, she carefully eat from one side to the other and makes sure it is a straight line, if not she nibbles the areas that aren’t in order to produce the straight line.  Today, I added the delectable apple pie to our order to see if she would eat that.  Carefully I broke it in half to let it cool off to make sure it didn’t burn her mouth, after I determined it was cool enough, I offered it to her.  She looked at it carefully before eating it leaving a straight line across.  She was looking down and I asked, Do you like it mom, as her face came up to meet mine, her eyes were as large as an owl’s in childlike delight of this new delicacy.  When we ventured back to her FTD home, we walked through the back yard twice and then went to her room.  She called me on her phone as is I wasn’t there and then we spoke for a minute and then she handed me the phone to converse with the person on the other end, which was me.  She did this twice today.  On to the living room to watch some Lone Ranger and Tonto, wow, was a blast from the past, as I remember watching that when I was growing up.  Next thing I know is she is up walking down the hallway and comes back with the nurse and says open the thing so she can.  Her sentences are only partial.  Yep, she was kicking me out.  I’m not sure why, but she decided that I needed to leave and so leave I did.

Let’s end today with a funny story from when mom first came to live with me, before she got so bad that a memory care unit became her home.

My son and I were watching the X-men movie where Jennifer Lawrence is playing the blue super hero.  My mom hears the movie playing and comes downstairs.  She stands there watching for a few minutes and then starts to exclaim,  “Oh my gosh, I have never seen a blue person in this city, I have never seen a blue person in this country, I have never seen a blue person in the whole world.”  I know it is sad, but my son and I couldn’t help laughing, she truly thought that since this was on TV, it was real and there were blue people in the world now.

The same thing happened when we were watching Jurassic Park. The the T-Rex came on screen, she said “Oh my, where is that.  I have never seen an animal like that, where is it.  Is it near hear?”  We tried to explain that it was just a movie, but her mind was damaged and just couldn’t comprehend that.  Again, it is sad, but sometimes laughter is what gets me through.  It is a funny memory to me.

FTD Frontal Lobe Dementia

Such a horrible disease.  As I walked into the group home where my mom now lives, she had the same facial expressions as she always has.  Her face seems stuck in one position, which is a facet of this brain destroying disease.  I arrive with a slice of pizza (her favorite) and an apple danish.  She eats the full slice of pizza and then we have to walk out the back door and stroll through the back yard arm in arm and wander back inside for the apple danish.  She continues to ask where we are going tonight and I try to explain that on Wednesday’s we don’t go anywhere but on Saturday, I will be back and we will go out to eat.  I can’t begin to understand how the brain which is so incredible can also be so destructive. As I gaze at my mother tonight, I notice how smooth her skin looks, she looks so young.  How can she be so sick and yet look so young.  I am without understanding as how this disease has stolen her life.  Yet I am comforted that she had many escapades during her early retirement years.  Traveling to California and the grand canyon, becoming involved in her local church and finding Jesus, God and the Holy Spirit even if she no longer remembers that, I am comforted by the fact that I know she is saved and will spend eternity with God and Jesus in Heaven.  As it began to rain tonight, she insisted that I leave.  She spent time walking through the house 3 times to find the workers who could open the door to let me out.  It’s like she still wanted to protect me even as her brain barely knew who I was.  It is such a troubling time as I struggle to understand who she was and who this disease has caged her into.  I love her and I hate this situation.  I try to make her smile and show her the honor that she deserves as my mother.  It is a difficult journey but I will persevere with Jesus as my guide.  His ways don’t always make sense to me but His ways are above my understanding and I will continue to walk this path and honor God and my mother.

Sunday at C2 Cafe

Decided to get out of the house today and visit the coffee shop in the downtown area of the city I live in. I’m a firm believer of supporting businesses in the city you live in.  The caramel cafe latte was incredible and the ambiance of the place is quaint and quiet but I picked the quiet time to come on purpose so I could blog while enjoying the atmosphere. I visited Mom yesterday, as I usually do on Saturday’s. She gets worse each time I see her as new manifestations of her disease start showing. She asked me if I wanted her to get on my funeral. She meant car, when I said no, she told me to go. We had already gone for lunch at Whataburger. Today starts ftd awareness week so it seems fitting to write about mom and her disease. The human brain is amazing when it is operating the way it was meant to. When disease takes hold it is frustrating to see the malfunctions in people you love. Some days I wrestle with even answering her phone calls but as a believer in Christ , I am expected to honor my mom and dad so I do the best I can to honor, serve and love her.

Why do Rabbits make borrows in yards with dogs!

This afternoon, I was in my backyard with my dog and before I knew it she darted past me and grabbed something in her mouth, I could tell it was a live something and I screamed at her.  She dropped it, or rather let it go on an upward trajectory and as it came sprawling back to the ground with paws spread in all directions, I corralled my dog back into the house.  Back to the backyard with dread in my steps, I found three little bunnies.  Each one would fit in my hand.  They had fur and eyes wide open, probably in fear of their first encounter into the world.  I saw where the burrow was and wondered if they were old enough to be out.  They could hop but they are not fast as least not fast enough for a 37 pound dog who obviously doesn’t respect the life of baby bunnies.  I immediately sent out a note on next door neighbor but many hours later, I was received no guidance on how to help these baby bunnies.  On last check with flashlight, one bunny has itself nestled under the fence, one bunny is by a fence post and the bunny that my dog was teaching acrobatics to is between the fence and swing set, probably contemplating how it’s going to make it in this cruel word of dogs.  I don’t know if they will make it.  I hope the mommy rabbit comes back tonight and helps them.  Otherwise the bobcat that roams the neighborhood with her baby will probably have a light meal.  The cruel world on the circle of life.

Saturday’s with Mom

As I was driving to see Mom on Saturday, I realized how much I didn’t want to go this week.  Friday evening, as I pulled into my driveway, a man was up near my fence gate and garage door.  He started running as I turned into my driveway from the dark alley.  My first thought was not to be afraid, which in hindsight wasn’t too bright.  I rolled down my window and started yelling “Who are you, why are you here, stop” Then reason began to return and I rolled the window up and thought was he trying to break into my house, what should I do now?  The neighbor across the alley is a retired Army Major who fought in the Vietnam War.  I called him and asked if he thought I should call the police. He’s an awesome neighbor and one time when I locked myself out of my house, he helped me break in.  That is a story for another time.  He said to call the police.  I called and the police in my city are kind and quick and thorough.  They said wait in my car and a hero would be by shortly to go into the house first and make sure it was safe.  Now, I realize I should probably be nervous, my fence gate doesn’t lock and because we have had lots of rain lately, the door into the back yard doesn’t lock correctly.  Ah the treasures of home ownership.  My knight drove up and quickly and methodically went through my back yard and house and deemed it safe.  I’m from Texas so of course I have protection in the house but I don’t have concealed carry but that firearm was on my nightstand all night as I prayed I would never have to use it.  In the morning I was supposed to go to my support group for family of those with FTD but now I had to go to Home Depot and determine how best to make my domicile safer.  I found a padlock for the fence gate, a relatively simple fix to make me feel safer.  I also found a chain lock for the french doors leading to back yard.  Of course my cheap drill wasn’t charged and I had to wait for it to charge and then drill pilot holes and then the screws.  I’m getting better with the drill but still the little muscles in my arms are not what is needed to use this cheap drill.  But I did it and the 2 new locks are working and I feel safe once again.  When we go through trauma, it is good to pray for the spirit of trauma to go and I did that because I don’t want to feel scared in my own home.  Now that I’ve missed my support group, I decide I should go see Mom.  Her phone isn’t working so I know she forgot how to charge it again.  It was another visit of her wanting to go to my house and not understanding why I wouldn’t take her.  Last week she didn’t like the french fries so this week she said “I don’t want to go to fish, the clicks weren’t good”  Yes, I am proficient at FTD language and knew what she meant.  We went to Wendy’s.  She loved there fries but hated the hamburger.  I was too tired to care.  I got her a frosty and she did like that.  Then we went back and when I left she tried to get into my car and the staff had to help get her back inside the home.  Some days it is harder than others to honor my mom and today was one of those.  I’ll see her again Wednesday and hopefully by then I will be mentally, physically and spiritually ready.

Saturday’s with Mom

There is so much to write as I walk through this disease with my mom but it is so hard to write it.  I want to cry, I want to scream, I want to be mad at God.  My emotions go haywire during my calls and visits with her.  This week as I got mom in my car, I realized she was wet.  She had peed on herself and didn’t even care.  It took me 10 minutes to convince her to get out of my car and allow me to take her back inside to change her.  I think she was afraid we wouldn’t leave again and she wouldn’t get her cheeseburger.  When I got her inside, I was able to get her another pair of pants and I was able to convince her to put on a pull up.  Yes, it was up to me to convince my mom to put on a diaper.  I never thought this would be a season of my life.  I had to pull her pants down and pull one leg off at a time.  It was a painful process. Then I had to put the pull ups on one leg at a time and then finally her pants, one leg at a time.  I gave her wet pants to the staff and asked them to wash them.  When we were on the way to get mom her weekly cheeseburger, she looked at me and said “Thank you for help”.  Sometimes she understands a little, mostly she doesn’t.  Her sentences are more and more like “Is the click going red?” and I have to attempt to understand what she is saying.  Lately, I say, “I”m not sure”. As usual, on the way back to her home, she said “Shame on you” as she realized that I was taking her back.  She wants to come back to my house and she can’t.  Sometimes, she stands at the front door for 30 minutes trying to press buttons to open the front door and escape.  Sometimes she tells me go because she’s mad at me for not taking her and she kicks me out.  The worst is when she says go and as soon as they go to open the door for me to leave, she tries to escape.  Then I have to sneak out when she isn’t looking and the feelings I leave with are so overwhelming that I usually stop and buy wine on my way home.  It is a terrible disease for her as well as me.

Saturday’s with Mom

We had to find a new restaurant to eat at this week as last week she decided she didn’t like Steak and Shake anymore.  The disease changes her tastes quite often.  I choose Smash Burgers.  On the way there, she would exclaim “Oh, look it’s yellow you can go now” (She could tell the light turned green, but forgot the word for green)  Then she would say thank you for the light turning.  When she saw an airplane, she said, “oh, look an airport” and then preceded to clap for the airplane until she couldn’t see it anymore.  She is slowly becoming an infant again.  She probably has the reasoning ability of about a toddler as she is also losing the ability to tell when she needs to go to the bathroom.  We walked in the restaurant and no one was at the register to take the order so in line with someone who has FTD, she yelled out “Someone help us, someone help us” I’m been very blessed that most people can tell right away that something is definitely wrong with mom and they are kind and gentle about it.  The human race still has compassion, thank you Lord.  She loved the food, but doesn’t remember how to wipe her hands or nose.  It seems like every time we go out, her nose starts to run and I help her by wiping it for her.  The burgers had sauce on them and when the sauce drips out, it drips on her hands and clothes and I try to wipe it up but she doesn’t like me to get between her and her food so many times it’s just impossible.  When I tried to drop her off at her memory care home she decided she was coming home with me and went from worker to worker and resident to resident trying to get them to put the code in the door so she could leave with me.  These are the hardest times, as I have to fight the guilt of should I do more and knowing I can’t.  Sneaking out when she isn’t looking is something the staff helps me to do and I feel bad for the staff in having to redirect her after I leave.  I know I am to honor my mother and I know I will be blessed for this here or in the hereafter.

Saturday’s With Mom

Mom called tonight. Actually, she called twice today.  I answer and say Hi Mom, she says “Hi  Beverly, Debberly, Debbie Petersen”   Yep, that is me mom, Debbie Petersen.  Are you happy today?  Yes, she says.  Are you coming today.  No, I say, not today.  I came yesterday.  Yes, she says… come today.  I say that I can’t.  More guilt.  Some days are worse than others.  Why did you put me in this position Lord?  I’m tired.  Your will be done, not mine.  Take her home and make her whole again.  But alas, your will be done not mine.

Saturday’s With Mom

Since I have a blog, I guess I should start writing on it.  Today’s as good a day as any.

Saturday’s, a favorite day of the week for many.  Sleep in late, stay up late and the possibilities for the in between hours are limited only by your imagination and bank account.  Is it a dream or reality, these Saturday’s?? I suppose it’s both.  Our time is limited by commitments, family and/or friends.  Our values try to determine where our precious time is divided.

My values have determined where my Saturday time is spent and honestly, I’m not always happy about it.  My mom is sick.  She has Frontal Lobe Dementia (FTD).  I visit her on Saturdays as well as during the week, but on Saturday’s I take her out to eat.  When I arrived she was in the living room and whispered to me “Do we need to take the brother?” With Frontal Lobe Dementia language is affected so she doesn’t use the correct words anymore and I can sometimes guess what she means but many times, I have no idea. We arrived at Steak ‘n Shake, her favorite for the last 3 weeks but I don’t know when that will change because her taste is greatly affected by her disease. They were busier than usual today so mom was a little agitated.  I know this isn’t good.  She wants to get up and find the people and help them get her food.  I kneel at her chair, in front of her to keep her from getting up.  I talk soothingly to her and am able to redirect her so she forgets what she wanted to get up for.  Finally, they bring our food,  I got a hot fudge brownie shake to share, bad choice.  The hot fudge on top was too thick and she choked.  Once I got some Coke to wash it down, on to the french fries and cheeseburger.  And wouldn’t you know it, today is the day the taste buds have changed and she doesn’t like the french fries and only ate half the burger.  Next week I have to find a new place to take her.

Now, back to the memory care home where she has lived since December.  I cut her hair and get ready to leave and she decides she is leaving with me.  She’s trying to get in my car and three of us had to redirect her and get her back in the home, behind the coded locked doors of safety.  Now, I have to wait for an opportunity to sneak out the door as she is sitting at the door insisting she is leaving with me.  After about 30 minutes, she decides to go look for one of her friends and the staff hurriedly lets me out.

Now, I’m back in my car trying to convince myself not to feel guilty.  My mom has a disease that is eating away at the frontal lobe of her brain and she isn’t able to have compassion or empathy.

I’ll continue to write on this going back to when she showed up to live with me and how it finally got to dangerous and I had to move her into memory care.

If you need more information on this disease, please go to this website. http://www.theaftd.org/