The Plumbing Fiasco

While dad was off in Colorado, helping my Aunt’s family, there were some plumbing issues brewing back at home.

Right before he left, dad had noticed that his floors in the kitchen and his back bathroom were feeling warm. He attributed it to a slab leak in the hot water pipe; he thought things would be okay if he waited until he returned home to go in and fix it himself.

While he was gone, my sister and I were noticing day by day how much worse the heat in the floors was becoming. It was spreading throughout nearly the entire living room. Despite the cool, 70 degree weather outside, the inside of the house felt like a sauna climbing to temperatures above 80 degrees. When I looked on the side of dad’s house, water was starting to flood the planters. I was worried that the leak needed attention before dad was able to come home.

By Monday night, dad decided to call in a plumber. He set it up for the plumber to come over the following day, mid-morning. He must have missed the mid-morning part, because at 7:00 in the morning dad received a call that the plumber was there. With dad being gone and a strange man in the house, dad just knew this was going to be a disaster. My brother-in-law, Melvin, went over right away to assist the plumber and try to reason with mom.

By 9:00, I got a call from my dad (while I was out on a morning walk) that mom was unruly and Melvin needed some back up. Soon after I hung up with dad, Melvin called.

“Your mom is yelling and throwing things; she’s pulling her hair and crying and telling everyone to leave.”

Clearly, mom was not handling this well. Not only was a stranger in her house, but her routine was being shaken up, and mom’s entire being centers around her routine nowadays. I was in the middle of a walk, so I rushed back to my house as quickly as I could and hopped straightway in my car. By the time I arrived at mom’s, she was calmed down a bit. I found her hidden in her bedroom. I unlocked her bedroom door, let myself in and sat by her side. Immediately she let me know how disgruntled she was about the man in her house,

“Tell those people they need to leave…they’re messing up my kitchen too and Bud isn’t going to be happy and they’re making so much noise too….”

Of course there’s no reasoning or explaining the situation to her; her comprehension is lost. I tried to distract her,

“Let’s go walk over to Aunt Ellen’s house,” I suggested.

“No, I usually go to her house on Fridays or Saturdays, I don’t need to go today.”

Mom eventually went back to her business…putting on make-up, curling her hair and playing her computer games (she skipped her shower which was a good thing because the hot water was turned off). But every time she heard loud noises she was reminded of the plumber and she banged on the walls to let them know she wasn’t happy.

Later on, my sister (who came over between a break from work) and I tried to convince mom to go out to lunch with us, knowing it was a lost cause but trying hard to distract mom. We also knew that her going into the kitchen to make her peanut butter and jelly sandwich was going to be a disaster. Yep. She had another fit when she walked through the living room and saw the mess. She was upset that the door was open and confused as to why there was a large hose going through her house. She tried pulling the hose out and closing the front door; we had to physically redirect her. She tried to move the oven back, knowing that it didn’t belong by the trash can and kept saying how mad Bud was going to be when he came home.

The plumber, who was well over 6 feet tall and had a solid frame, became a little nervous of my mom after she came through the kitchen and kicked at him while he was down on the floor and grabbed onto his arm to pull him out of her house. Melvin had to step in and pull mom away. She didn’t hurt him (her kicks were more like swatting at a fly), but it was enough that the plumber was a little wary that she might actually hurt him!!

There’s a lot more I can write, but you probably get the gist of the situation. It was an ordeal and I hadn’t planned on spending that day with her. But, there’s always something unexpected that comes up with dementia. We are learning how to adjust and deal with these situations. House emergencies are not our favorite!!!

Mom's Grand Entrance

I had just sat down in the pew at church this morning with my family when a lady in my ward caught my attention and mouthed the words,

"Your mom is looking for you."

I glanced behind me to the doorway which separates the chapel and foyer, and saw my mom. She was wearing her pink "mother-of-the-bride" dress, which hangs loosely on her now, adorned with delicate beading on top of layers of chiffon. Underneath her short sleeved dress, she wore a long sleeved, pink cotton shirt. Thick, white cotton socks peeked out from underneath the hem of her dress. She wore the only shoes she ever wears: her brown, tennis-shoe-style Skechers that have velcro straps criss-crossing her foot. Her face was splotched with dark, orange foundation which stopped harshly at her jawline, contrasting her pale white neck and the areas she missed around her eyes and mouth. Her eyelids were smudged with dark, brown eyeshadow. Surely, she was a sight to see.

In our church, we separate ourselves by geographical boundaries into wards; think of it like boundaries for schools. Even though I live five minutes away from my parents, we attend different wards. At one time, before a boundary realignment, my parents were a part of this ward (so they know many of the church members in our ward); when the lines were redrawn, their neighborhood was put in the next ward over. However, we do attend the same building. Our congregation services overlap by 1/2 hour; my parent's ward is finishing up in their class just as our ward is arriving for our main meeting (called sacrament meeting). Mom always looks for me during this overlap time, so it was no surprise to see her in the doorway looking for me (although usually I catch her in the halls). To tell you the truth, I think it's sweet that she looks for me and I look forward to her finding me each week at church.

When I saw mom, I stood up and walked toward the doorway (we still had another minute or so until our service started, and I could tell she wanted to say hi). As I walked towards the back of the chapel, I glanced up and saw a new couple that I had never seen before in our ward (which goes without saying that they don't know me, or my mom). The husband turned his head towards the doorway and immediately I saw his eyes bulge open in wide surprise as he caught sight of my mom. He leaned over to his wife and whispered something in her ear and I saw her eyes move towards the doorway as well. They both looked at my mom, as if she were in some kind of freak show and instinctively I approached my mom and put a protective arm around her, turning her away from spectators. I gave her a hug and told her I was happy to see her. Of course she wasn't satisfied with my greeting alone; she wanted to see the kids too.

"Is that Jeff too? And where's Maurina and Am-Amber, is that them too?" she asked, peering back into the chapel.

She marched right into the chapel and stood, as the service was beginning and with everyone else around her sitting, in the pew where my family was sitting. She talked in a rather loud voice, greeting each of the kids and my husband. I followed in behind her and convinced her to sit down with us for a few minutes. The opening prayer was given and mom talked right through it,

"I used to know so many people in this ward, I don't remember so many people anymore but there was that one man who was a bishop so long ago and his wife too..." she continued to talk as I gently rubbed her arm and whispered to her that they were giving a prayer, suggesting that we should fold our arms and be quiet. She didn't follow my lead. Fortunately, a lot of people know my mom and are aware of her situation, so they simply smiled or pretended not to notice; I imagine some might have found it a bit amusing. But for those people who don't know my mom, I'm sure they were caught a little off guard with this bizarre woman.

After a couple of minutes, mom became restless and told me she was leaving back to her class. She abruptly got up and walked out of the chapel and when I turned back to watch her exit the room, I saw the couple look her again.

To be honest, I can't blame them for looking twice at my mom; she does stick out like a sore thumb. Admittedly, if I were in their shoes, I might do the same thing. I'm not embarrassed or ashamed of my mom in the least; obviously this is something she can't help. But as the congregation began to sing the next hymn, I found myself blinking back tears for my mom and swallowing a lump in my throat. My beautiful mother, in her right mind, would be completely embarrassed to be made a spectacle of. She always took great pride in her appearance. Thankfully, she is unaware of the attention she attracts when she leaves the house. I'm not mad that people turn their heads, but it hurts all the same; the pain is for my mom. This is definitely a learning experience for me. For one, I have to learn to have a thick skin; no easy task for a girl who was always pegged as being "over-sensitive". For another, I have definitely learned to think twice before I stare at or make assumptions about a person's appearance. You never know what battles a person is fighting.

Welcome Baby!

I am back from an amazing weekend. I mentioned in my last post that I was going to Arizona for the weekend for the birth of my nephew. Yesterday, my twin brother and his wife (who has become my best friend and truly my sister) welcomed their baby boy into the world. I just had to share this joyous occasion with you all. He’s absolutely perfect.

It was a mix of emotions; it was incredibly amazing to witness my sweet nephew enter the world and take his first breath of life. I am SO glad that everything worked out as it did and that I was able to to be there. It is a moment I will always remember and cherish.

Mom was supposed to make this trip with us. Unfortunately, she is to the point where she hardly comprehends. I think she vaguely understood that the baby was going to be born. But she was concerned in staying in my brother’s small apartment, where she would not have her own room and would be at risk of being seen as a “plain Jane”. The night before we were to leave, dad tried to help her pack her things. She was insistent that they go in their camper trailer so that she could bring her milk, food and have a home for all of her personal belongings. My dad had booked a hotel room and tried many times to explain this to her. Unfortunately, she couldn’t grasp the concept and when she finally understood that the trailer wasn’t being taken, she refused to go.

Thankfully, my sister babysat mom so that my dad could come along on this weekend trip to meet his new grandson. I suppose it worked out that mom didn’t go. It was a nice thought to take her but realistically she wouldn’t have really understood what was going on and she would have been stir crazy without her computer games and controlled environment. It was also nice that dad was able to hang out with us, stay the nights at my brother’s house with the rest of us, and not have to stress out about accommodating mom’s schedule. Still…it is sad that we are at this point in life where mom is not able to be “here” for us during these big moments. That is something I definitely missed as we were all fussing together over the new baby.

When we pulled into dad’s driveway this afternoon (to drop him off after our road trip), mom was waiting and peeking out the living room curtains. She greeted us in the driveway, a smile on her face, happy that dad was home. I showed her pictures of her new grandson and she asked what his name was (despite me telling her several times as I showed her the pictures). When I answered her that his name was Zach, she said,

“Zach Zach, what do you mean by Zach? That’s not a real name Zach, you know what would be nice is if they named him the same name too-after him too” (meaning my brother, Joe) “that would be real good too.”

We all chuckled at that. I don’t know if she’ll remember his name, since she doesn’t seem to be able to retain any new information these days and she has nobody to associate the name Zach with to help her remember. But…we will remind her often :)

It Takes A Village

If anything ever happened to my dad, I don't know what the heck we would do!

My dad returned last night from a 7-day trip to Colorado. Although it was a break for him from his responsibilities with mom, it wasn't a restful trip for him. Over Thanksgiving break, my Uncle (who is married to my dad's baby sister) was in a serious accident when his truck rolled on black ice. Though he was lucky to even be alive, the accident has left him paralyzed from the chest down. As you can imagine, that brings about major life changes for my Aunt, Uncle and their family.

Shortly after the accident, my dad told me that he'd likely be making a trip to Colorado to help prepare the house for my Uncle's return (this was before the subject even came up with my Aunt). Their entire house has to be remodeled to accomodate his wheelchair and my dad specializes in bathroom remodels. For the past 5 or so days, he has been working alongside his brother and my cousins to ready the house; in particular the bathroom. Of all people to have an excuse not to go, my dad would be the one. But he didn't even give second thought to it (other than making arrangements for mom, of course). Yep, he's a pretty awesome guy. Now you know what I mean when I tell you he is one of the most selfless people I know!!

I will tell you this...I am sure glad he's home!! We've survived the week, but let me tell you...it's been an adventure. For one thing, mom was very unhappy about having people at her house 24/7. We worked it out to have some wonderful ladies from church stay with her during the morning hours until she went down for her nap. Other family members went over to check on her in the afternoon until dinner time and then my sister, her husband, my husband, myself and even my teenage girls took turns spending the night with mom...just in case there was an emergency in the middle of the night. It wasn't necessarily an easy task, but we were all happy to help out dad and, in a round about way, help my Aunt and her family.

Here are some fun highlights with mom from the week. She:

*Hid from my sister in her bedroom closet
*Escorted my husband to the front door and pushed him out (on his night to stay over...I was leaving for home with the kids and immediately after she locked him out, I unlocked the door with my key and let him back in)
*Walked in on my brother-in-law (in the guest room) while he was changing, and in his underwear, and started a conversation with him
*Escaped outside during naptime to sleep in the trailer
*Darted outside, abruptly, to go on a walk while the teenagers were babysitting (they had fun chasing her and coaxing her to stay in the neighborhood and not up to the store)
*Woke my brother-in-law up in the middle of the night to tell him to be quiet (he snores loudly)
*Yelled to my brother-in-law from inside her room (when he knocked on the door to let her know he was there) "You can't come in. Only Bud can see me naked!" (I'm still laughing about that one)

One of the worst nights was Monday. Mom was itching to go to the store. Of course dad stocked her up with plenty of bread, peanut butter & jelly, milk and "Slim Fast" before he left, but if there isn't triple the amount of what she needs to get her through the week, it isn't enough! She had been calling me and pestering me all day to take her to the store. When I arrived Monday evening, I tried to convince her that she didn't need to go; to no avail, of course. Mom wouldn't let it go and I was afraid she was going to be unruly for her caretaker the following morning, so I figured I'd leave the kids with my hubby and take her. I reiterated, over and over and over, that I wasn't going to buy her medication. Like most everything else, mom either didn't hear or couldn't comprehend what I was saying. Of course she made a mad dash to the medicine aisle where she ripped open a box of Sleep Aid. After unsuccessfully trying to get it away from her, I figured I would make it disappear at the check-out stand. Not as easy as it sounds...mom hovered over the box of pills, waiting until he rung it up so she could put it in her purse.

But I had a back up plan. I had chosen Mike's check-out line and he was my ally. Mike's dad passed away a few months ago from FTD and he's one of the cashiers who helps keep tabs on my mom when she comes in. He knows just what we're dealing with. Mike took the medicine away and put it behind the register, thinking he could just distract her. No such luck. Mom came unglued! She attempted to reach behind the register and retrieve her medicine. I finally told Mike just to ring it up and give it to me, which he did, and I put it in my purse. But that didn't help either; mom tried grabbing my purse and pushing me out of the way to get ahold of her medicine. Mike remained quiet and calm and told me to just pass it back to him. He was ready to be the bad guy I suppose. I tried to explain to mom that I didn't have enough money for the medicine (to which the guy behind me offered to pay for it). For some odd reason, I thought she might be able to understand that! Nope! She started yelling at me that I wasn't supportive of her, and then she yelled at Mike that he wasn't supportive and caused a real big scene. As the two customers behind us checked out, I kept trying to gently pull mom's arm away to lead her to the car as she yelled at me,

"Owe! You're hurting me! Stop!"

Just as I was about to give in and go back for the medicine, embarassed at the the many eyes that were watching us, mom finally threw in the towel and admitted defeat. Not quietly, I might add. She grumbled the whole way to the car and made sure I knew that she wasn't happy with me. I've learned to not take that personal anymore.

Like I said, I'm glad my dad is back :) I know mom is too. She had a hard time understanding where he was and why he was gone so long. Even when we explained that he is states away, in Colorado, she demanded that he come home that night.

"No he shouldn't be away from me so long, no. I miss him too and I'm going to need milk too, he told me he was coming home Thursday" (dad meaning next Thursday) "so he should be home now too."

The past few days were especially confusing,

"I feel like he's divor-icing me, he's been gone so long".

I suppose long trips like this won't happen very often; it was a special circumstance. I learned this week just how dependent mom is on my dad. He is her security and it's been kind of hard for her to be without him.

Of course I can't forget to mention that there was a plumbing emergency while dad was gone. That was the point that mom really lost it!! I will share that story next week but first...I'm off to Arizona to be with my sister-in-law this weekend as we welcome their baby boy, Zach, into the world!!! I'll be taking both mom and dad with me so they can meet their new grandbaby.

Say What?

 

Part of the problem that comes with frontotemporal lobe dementia is difficulty with speech. For mom's dementia (semantic) it started with losing her ability to find the right words she needed to use. She's adapted by using particular words frequently in place of a variety of words. For example, if something is major, bad, excessive, etc she calls it "severe". If something is strange, funny, different, unusual, etc. it is all categorized as "weird". She says "too" during almost every sentence (often more than once in a sentence) when she can't think of the right words.

Over the past couple of months, mom's language has really taken a turn for the worst. Her speech is becoming more and more slurred and it's becoming more and more difficult to understand her. If a person is not familiar with her, they may not understand what she is trying to say. I am still able to piece together what she is trying to say...most of the time.

I tried to copy down some phrases with her slurring and mumbling, in order to give an example of just how bad it's getting. But it was very difficult to translate it and write out the sounds she was making. To give a brief description, she speaks very rapidly and misses a lot of sounds in words. Some words are completely mumbled into sounds more than words. She repeats things a lot, as if she is stuttering. Here's my best attempt in writing her speech (what she said to me the other night when I coughed in front of her):

"Why do you cah-cough like that a-ha-aha-aha you cah-ah-wa-a-ha-wa-ha you cough like that a why do you cough like that too?"

Intprets to: "Why do you cough like that? A-ha-aha-aha" (making a coughing noise).

The best way to get a glimpse at her language is through video. Please understand that I'm not posting this to make fun of my mom. I have many readers whose loved one suffers from the same disease as my mom and are behind her in their progression. This helps those readers to know what to expect and it also helps my readers who are in the professional field as caretakers or researchers of dementia (such as our UCLA team).

It will be hard to understand what she is talking about. So here's a little background: as she was stirring her evening dinner (Slim Fast), she was recalling the memory from many years ago when she took me to college (BYU-Idaho, which is a church school). After my parents had dropped me off in Idaho, they visited my dad's best friend in Oregon. At that time in her life, she had been gaining weight and started drinking Slim Fast as part of her diet regime to lose the weight. She often remembers this when she drinks her Slim Fast. Now...see if you can make any sense of what she's saying.

Changes

Sometimes it’s hard to gauge just how much mom has changed in a year. This blog has been valuable in documenting those changes but for those who don’t engage with her regularly, her appearance is the most apparent way to see how much she’s changed. 2009/2010 was when we really started noticing the changes in mom. But only within the past 2-3 years has mom’s appearance been changing. Gone is the sparkle in her eye. Every now and then it comes back, but her whole demeanor has changed. Most obvious is her ability style her hair and make-up as she once did. Mom was always so well put together. Her hair always had style and laid just right. Her make-up was always nicely done. As with all of her abilities, this one is fading fast. In fact, it’s on the fast track over these past few months.

 

2010

 

 

 

 

 

2011

 

2012

2013

2014

Honestly, the camera flash tames it down just a bit. It looks much more dramatic in real-life. Over the past few months, mom’s make-up is gradually becoming worse and worse. She wears harsh, orange lines around her face and hairline from her beige make-up (she insists on buying shades too dark because she doesn’t like being white) and sometimes there are dark, uneven splotches on her face. She’s really caking on the eyeshadow and the eyeliner as well. I’m sure you’ve read my other posts about her hair…

I’ve tried to help her to tone it down, but unfortunately she doesn’t comprehend much of what I say these days. I’ve decided that instead of wasting the energy to try and correct her make-up, I will just tell her how lovely she looks instead. After all, it IS a great thing that she is still putting in the effort! The day that mom stops wearing make-up is the day we’ll know that we’ve passed the point of no return.

You will always be beautiful to me mom!