Mom's Walks

Lately, all mom wants to do ALL DAY LONG is leave the house-usually to go "exercise" to her sister's house (Ellen). She paces all day long between her bedroom, computer and the front door. She's started doing something new: she puts her mouth to the door and intakes deep breaths. It sounds much like Lamaze breathing and looks like she is trying to suck in oxygen from outside, as if she can't breathe. It makes me so sad to see. I want to take her out walking but it's complicated. I feel like I've got a pretty good handle on things and I'm not intimidated in the least to take care of my mom in any way. I actually do like getting her out to walk. However, I have to consider safety and it's difficult to wrangle both my mom and my 4 year old when walking on busy streets to Ellen's house. I'm also concerned about whether or not mom can actually walk that far these days. It's only a mile, but she tires much quicker now.

I used to be able to drive beside mom while she walked. When she got tired, she hopped into my car and I drove her the rest of the way to Ellen's house. She stayed on the sidewalk and looked for cars before crossing the street. I received many funny looks as I crept behind her in my car, and even concerned neighbors asking if all was okay (understandably...I must have looked like a stalker!) But I was okay with it if it gave mom a chance to get some exercise. Unfortunately, my stalker-driving days came to an end a few weeks ago when I realized that it was no longer safe for mom to be out walking without someone directly by her side. I was stopped, in my car, on the corner of the street, waiting for mom to safely cross. A car was coming towards us, getting ready to turn the corner. Mom looked and saw the car and paused. As soon as the car started to turn, mom decided it was her turn to cross the street. Thankfully the car stopped for mom; it could've been disastrous. That was when I realized her walking-alone days were at an end.

So now the problem remains that mom wants to get out walking and is unable to. Many of our volunteer caregivers are older and wouldn't be able to keep up with her (or have to maneuver her if needed). She can't make it all the way to Ellen's anyway, so two people are needed to make this happen for her. The past two weeks, I've been able to go over on Sunday afternoon and take mom out to walk to Ellen's. I walk beside her while my husband stays with the kids at my dad's house and when mom gets tired, someone comes and picks us up in the car. Last week, she was able to walk the entire way to my sister's house. Yesterday, we started walking to Ellen's house but I called my dad when she started panting and pausing about half mile into our walk. Sunday will probably be our new walking day, since that is a day when the family is gathered together and I have help to follow us.

I was able capture a sweet moment with my mom at Ellen's house. Mom's new way of showing affection is shaking/holding hands with people. She doesn't hug or kiss anymore, but when she grabs your hand, you know it is a show of affection for her. Quite a few times now, mom has sat beside her sister on the couch, holding and swinging hands. It warms my heart to catch those rare moments where mom's heart is happy.

The Lost Jacket

We've been experiencing some warm weather here...and it's barely just spring! It's been in the 80's and 90's and mom still insists on wearing her thick, fleece jacket for every second of every day. It's gotten to the point where she has even been sleeping in it. She cannot make the connection between her severe sweating and her jacket. Needless to say, it is a concern for us when she goes on her walks in this heat. She ends up extremely hot and sweaty and refuses to drink water; we are afraid she will overheat herself and pass out. Try as we might, we cannot peel that jacket off of her!

My dad decided that the jacket needs to disappear. He was able to take it away one day, either when mom was showering or when she was changing (I'm not sure which). Of course mom has been frantically searching for her jacket and quite upset that my dad "lost" it. Not to fear. She has found ways to improvise. Each day, we find her with something new worn over her clothes in place of the lost jacket. It might be a dress, dad's t-shirt (worn inside-out and backwards) or dad's jacket. But mom is resourceful and creative!

The Return of Happy Feet

This week has been especially rough with mom. She suddenly has bounds of energy and her happy feet have gotten even happier. She used to only try to go out walking in the mornings (walking to the store, her sister's house, etc) but this week it has been an all day ordeal. And even after she's gone out once already in the day, she is anxious to get out again in the afternoon (once a day used to be her limit). I have my theory as to why. I'll share that in my next post.

On Monday, I became very nervous when I arrived at mom's house and found her putting on her bra; that is the sure sign that she is ready to get out of the house. She informed me that she was waiting until 11:00 and then she would go get her exercise. I don't have a problem keeping up with her, but I had a busy three-year-old to drag along with me and I wasn't sure I could wrangle both of them. I made a couple of phone calls (for back up) with no luck and then plopped down on the couch, trying to figure out my game plan. It was my lucky day. Just before 11, dad pulled up to the house; apparently he was done working early. I breathed a sigh of relief and warned my dad that mom was planning her escape. I wasn't sure where she planned on going, as she had no money that I knew of, but she had mentioned the name "Marty" in her mumblings to me earlier. Marty is a family friend from church, who lives in the next neighborhood up. I was pretty certain that mom wouldn't be able to remember which house was hers.

Well...to make a really long story short, mom tried leaving the house several times that day. Dad hid her purse and coat to prevent her from leaving, and though she was pretty angry about it and frantically searching for her belongings, she ultimately decided she didn't need those things where she was going. She stood in the living room, looking out the window, the wheels in her head obviously turning. In a flash, mom darted out the front door and was sprinting up the street. My dad hopped in his truck and drove alongside her as she tried to navigate her way to Marty's house. At some point, she made some wrong turns and when dad knew that she wasn't going to give up, he steered her in the right direction. Upon arrival at Marty's house, mom marched right in the door without even so much as a knock. Fortunately, nobody was home (either that or they were hiding in the back room, lol) but dad was not amused that she was walking into someone's house uninvited. Can you imagine if he hadn't been with her to show her the right house??

Once dad returned home with mom, she ate her lunch and took a nap. When she got up from her nap, she was at it again. She sat at her computer games for a couple of minutes here and there but was distracted with ideas of more grand adventures outside the house. My dad blocked the front door several times, but as soon as his back was turned, she was out the door again. This time we hopped in my van and drove together. As I pulled over to the curbside a few feet in front of mom, dad quickly moved around the car (while I opened the back sliding door and set the child locks) and pulled her into the van. She struggled and was half-upset, half-giggly that dad was abducting her and seat-belting her down. She attempted to open the door but she was no match for my child locks. It's a good thing the neighbors know us or we may have been facing kidnapping charges ;)

My dad and I had an errand to run together after that last incident, and my sister came to the house to "mommysit". In the two hours that we were gone, Christina spent most of that time guarding the front door and thwarting mom's efforts of getting away.

That was the start of the week...and just about every day since. I'm really not too sure what transpired today, since I left out of town for a wedding. But for the past 3 days we've been chasing down mom. On Tuesday, we had a new caregiver at the house who didn't notice mom escape through the garage door. I got a call from the manager at the grocery store informing me that mom was up there, alone, ripping open boxes of Sleep Aid medicine. Apparently she found a stash of my dads change and it was just enough to buy her a bottle of pills. Later that afternoon, I went to check on her after I picked up my kids from school (we had nobody else to cover the afternoon) and I found the front door slightly ajar and the house empty. Thankfully, the Avon lady/mom's friend found her and brought her back home (she was trying to track her down for more eyeliner). Yesterday she took an escape to nowhere while that same friend (Avon lady) sat at the house with her. They ended up taking a walk around the block.

So, after an exhausting week, we have been working diligently on refiguring her caregiving situation. It seemed to be working to only have a caregiver scheduled in the morning but she obviously needs supervision 24/7 now. We have some great ladies from church who have been coming over and helping out, along with some family members, but we still have a lot of time unaccounted for. We are in the process of hiring some other caregivers to fill in the gaps and should have that all straightened out by next week. In the meantime, my dad has his hands full!!

Seasons Change

Fall is my favorite time of year. I love the change of the season and the nostalgic feelings it brings with it:  from the crisp, cool air to the smells of cinnamon and pumpkin and apple baking in the kitchen to the celebrations of the holidays-my birthday, Halloween, Thanksgiving.

With our temperatures in the triple digits over the past month and a half, I couldn’t have been happier with the approach of fall. Yesterday marked the first official day of fall and the past week has been kind to us Californians. The weather has been cool enough to turn the air conditioning off and to open up the windows and breathe in some fresh air.

The cool air, however, does increase some struggles we’ve been having with mom. I’ve recently written about mom’s “happy feet”; mom’s latest fixation is to go for walks.

“It’s so good for me too…It’s such good exercise for me…” she remarks about her 1/4 mile walks to the store or bank.

Now that the weather is cooling down, she is more determined than ever to get out there and go walking. One benefit of the triple digits was that we could usually talk her out of walking in the sweltering heat! (Mom hates to sweat).

All that to say, I’ve tried to nurture this newfound love for walking and have suggested to mom that we go for walks around the block. Walking is good exercise for her, but I think sometimes she points that out to manipulate us into being less suspicious about her true intentions. Unless mom has a purpose in mind, she really isn’t as interested in walking as she makes herself seem. Mom has 3 primary purposes to go for walks:

1. To visit her sister

2. To walk to the bank in an attempt to withdrawal money

3. To go up to the store to buy medicines that she’s not allowed to have

Having people with her every morning has helped immensely. We now have every morning covered so that mom is monitored during her “happy hour”. Morning has usually been the only problematic time with her; in the afternoon she naps and then wakes up to take medicine and eat a snack while playing computer games. Mom is pretty unhappy about having people looking over her shoulder every morning. It prevents her from accomplishing her aforementioned objectives. It seems that in her determination to get out without an escort, mom is taking drastic measures. Very drastic. Mom is now skipping her nap. Yes, you read that correctly: mom is skipping her naps!! If you’re an avid reader of mine, you know what a big deal this is. That one thing that has been both a pain in the neck yet a source of comfort at the same time-talking about her rigid routine-is now being broken to bits in her rebellion to get away. We used to count on the fact that at 12:00 mom eats lunch and at 1:00 she goes down for a nap. It left only a short window in the morning that mom needed supervision to prevent her from fleeing the coop.

I’ve heard of mom skipping her naps a few times in the past week. Today was the first time I witnessed it firsthand. This morning, I took mom for her long awaited haircut (it’s been a while!) I was relieved when we finished up; it was 12:00- just enough time to get her home, fed and down for a nap before I went to pick up my son from Kindergarten.

On our ride home, mom pulled out her coin purse and began counting some dollar bills. I knew, from talking to my dad yesterday, where the money had come from. Mom spent last week scrounging around the house for any change she could find in an attempt to cash it all in at the bank for dollars. Among her stash were some arcade tokens as well as old coins from dad’s coin collection. I think dad was able to retrieve the valuables before she took the rest of the change up to the bank to cash out the $8 worth of coins she had accumulated.

“Mom, what are you doing?” I asked, glancing over to the passenger seat next to me, watching her count her dollars. I didn’t even need to ask.  I knew very well what was on her mind.

When she didn’t answer, I asked,

“What are you going to do when you get home mom? Are you going to take a nap today?”

After asking several times, she finally scrunched up her shoulders and gave her head a little shake.

“I don’t know, I feel so good too when I walk, I don’t have to take naps all the time when I walk too,” she quickly said.

“But mom, you haven’t gone on any walks today. Are you planning to go for a walk?” I asked, knowing full well of her intentions. On our way to her haircut appointment, she had asked me if I would drop her off at the bank on my way home. And that’s only because I arrived to her house early; her original plan was to walk up there before I came over (I caught her off guard when I showed up “early”). When I told her I wouldn’t take her to the bank, she came up with Plan B.

Now I faced a dilemma: what to do. She refused to ride with me to get my son from Kindergarten. As it neared time for me to leave, she showed no signs of going down for her nap. In fact, she was in the bathroom putting on lipstick when I left. Nevertheless, I had to leave. I decided to drive back to the bank after I picked up my son to see what mom was up to.

Sure enough, as I drove down the street, I spotted mom scurrying along quickly up towards the shopping center. I pulled the car over and rolled down my window. Mom was surprised to see me and was quite concerned that I needed to pick up Cody from Kindergarten. She peeked in the back window to see if he was there (he was). Then she turned to me and said,

“I’m just walking to get some exercise, it’s so good for me to be walking up here.” Then she mumbled something I couldn’t make out and walked away. I let out a sigh and turned my car around to follow her into the parking lot. At one point, mom was actually sprinting along the sidewalk; strangers turned their heads to see what the big hurry was.

I stalked mom from my car and watched her pass by the grocery store (after hesitating momentarily at the door) and cross the parking lot to the bank. I drove ahead of her, parked my car and got my two boys out of their car seats. I followed behind her to the line and asked her what she was doing. She ignored me.

When it was her turn to go forward, I followed behind her. She began talking so quickly it was almost incomprehensible to the teller.

“I want to know can you check this please too and tell me is my disability in there too, they’re supposed to give me some money for disability too can you please tell me if it’s there please too?”

The teller glanced at me, standing behind mom’s left shoulder, and I mouthed to her,

“She has dementia.”

The teller nodded and I audibly told her,

“She’d like to take some money out.” Then, quietly, I added,

“Can you please tell her there’s no money there?”

The teller was very cooperative, understanding my dilemma, and told mom there was no money in the account.

“No? It’s not here yet? You mean I have no money to take out yet, no? What about my husband’s account?”

The teller apologized and told her again that there was no money.

“Oh well I have $8, I hope that’s enough,” mom said. And she quickly turned around and darted out the bank door.

I thanked the teller and followed after mom. Except that I had to put my boys back in their car seats and drive across the lot. I put a quick call in to my dad, notifying him of the situation. I was able to prevent mom was draining the bank account but I wasn’t able to prevent her from buying the medication. I caught mom just as she was entering the check-out line, “Sleep Aid” medication in hand. At this point, there was no stopping her, so I stood quietly by as mom paid $7.08 for her medicine. I offered her a ride home, but she walked past me. The only words she said were,

“Don’t tell your dad I got this, if you tell your dad I bought this I’m going to be so mad at you too. He doesn’t support me, you should support me.”

And with that she stormed off and started her walk back home. I started following her back to her house, to make sure she arrived safely, but as we turned out of the parking lot, I saw dad’s truck pulled over to the sidewalk. He had finished work up early and, knowing the situation we were in, waited for mom to follow her home. I glance back in my rearview mirror to see dad driving alongside her and mom staring intently downward seemingly oblivious to any truck driving beside her.

A while later, I called and checked in with dad. He reported that he had confiscated the medication and that mom was upset and told him she hates him. She doesn’t know what she’s saying; she is throwing a tantrum for not getting her way. Nevertheless, I am sure it hurts. It’s hard to have to take away freedoms from someone you love. As hard as it is for me, it’s tenfold for my dad to have to do this to his spouse, his partner in life.

As mom’s behavior becomes harder and harder to manage, I can’t help but to feel anxious and worried about the future. How long will dad be able to deal with this? What is our next step? Will mom be able to stay at home in the long run?

Happy Feet

I think I’ve written in other posts that mom’s latest fixation is taking walks. We have concerns with her walking by herself, so to prevent catastrophe, we have “babysitters” over daily to keep an eye on those happy feet.

A couple of weeks ago, on a Friday, a lady from church was over watching mom. Mom was adamant that she was walking to her sister’s house that day (about 1 - 1 1/2 miles down the road) and was quite annoyed that people were over everyday to visit when all she really wanted to do was go for a walk by herself. This sweet sister from church told mom she would be delighted to walk with her, so off they went on their walk to my Aunt’s house. Once at my Aunt’s house, my Aunt told this lady that she would make sure mom got home safely and that she need not stay with her the rest of their visit. A little after noon time, my cousin drove my mom back home to her house.

Today mom was at it again. I got a text from my Aunt Ellen to say that mom had walked over to her house. That same lady from church had gone with her and once they were at my Aunt’s house, she left mom to visit with her sister. My Aunt had planned on driving her home. However, when mom was ready to go home, Aunt Ellen couldn’t find her car keys. Waiting patiently is not an ability mom possesses any longer. As my Aunt went to change her clothes and look for her keys, mom slipped out the front door. Aunt Ellen is disabled, so she was unable to chase after her and she still hadn’t found her keys.

Meanwhile…I was picking my son up from Kindergarten and never heard the notification that I had received a new text. I had just gotten in the door, was trying to cool off from the heat outside and sat down in my chair, thinking of what to make the boys for lunch. I made a quick phone call to handle a business matter. As I was on the house phone, my cell phone rang and I saw that it was my other Aunt (Claudia). I didn’t think much about it (she wasn’t with my mom today, so I never thought it would be a call about mom) so I dismissed the call as I finished up my other phone call. When I hung up the phone, I opened up my cell phone just in time to receive a second text from my Aunt Ellen, entitled: “Urgent”. I read through the 2 texts to learn that mom had gotten away before Aunt Ellen could stop her. I texted her back to ask if she had found her keys, knowing she most likely hadn’t, and immediately loaded the boys back into their car seats.

Right as I was pulling out of the driveway, my dad called.

“I’m on my way out the door to look for mom,” I said, knowing that was exactly why he was calling.

Dad was frustrated. This was exactly the kind of fiasco that he has been worried about and has tried so hard to avoid. He tried calling mom’s cell phone, which led him straight to voicemail. His fear was that mom had become confused on her way back and lost her way. And with her not answering her phone, it added more stress to the situation.

I tried to reassure my dad that mom getting lost would be the last of our worries. I worried more about her not recognizing traffic and getting hit by a car, or collapsing from the 100 degree heat. In our meetings with UCLA, and in my research on semantic dementia, the memory of how to get from one familiar place to the next remains preserved…at least, until the later stages.

However, as I was talking with dad and driving around, I saw no signs of mom. I drove around the route that I thought she was most likely to take. Then I looped back around to try the alternative roads she could have turned down. Still no mom. I was beginning to get a little worried. I hung up with dad to call Aunt Ellen to verify what time she left her house; surely she couldn’t have made it all the way home yet. As I made my way around the loop for a 3rd time, Aunt Ellen on the line, I finally saw mom. Relief swept over me when I saw her face. I pulled the car over to the curb, where mom stopped and stood by as if she was waiting for me to drive past. She finally realized who I was and opened the passenger door.

“Oh good, it’s so good you were driving here too because I’m so sweaty and tired too and I got lost coming back; I went to Ellen’s and I took the wrong way, I went the other way instead of that way and it was so weird too and I couldn’t find the right street and then I had to go all the way back around and then I came this way too so it’s so good you found me….”

On and on she rambled, hardly pausing to breathe, let alone allow me to get a word in. Over and over I asked,

“Where is your phone? Mom, dad was trying to call you, why aren’t you answering your phone?”

When she finally heard what I was asking, she replied,

“My phone? Here, it’s broken, it wouldn’t work so I tried to fix it at Ellen’s but it won’t work so I have to take it home too and charge it…”

I tried to explain to her that she cannot leave the house without making sure her phone works and furthermore, she should not be walking alone. She didn’t hear a word I said. Instead, she rambled on and on about her walk, how much she was sweating, how the lady from church walked her to her sister’s. On and on she went until I pulled into her driveway.

“I’m glad you’re safe mom, please don’t scare us again,” I said (talking over her, of course).

Mom unlatched her seatbelt and opened her door.

“Oh I need to see if the mail’s here too. It’s so good that you saw me, I’m so sweaty I’m gonna go get the mail now and go inside.”

And with that, she shut the car door and walked away.

I am glad that mom was safe today. One thing is clear…we can’t rely on mom’s ability to navigate anymore. Sadly, that ability is declining with everything else. And now some more hard begins, as dad has to figure out how keep mom “under control” while he is gone for the day at work. :/

Mom’s Attempted Getaway

I think mom has been feeling a little confined lately. Not that there’s a whole lot she likes to do outside of the house. But I think she senses that her independence is slowly being taken away and is determined to keep a hold of it. Her newest fixation is taking walks; I’m not talking about a leisurely walk. Her walks have a purpose, a destination. Her favorite places to walk are: her sister Ellen’s house (who lives about a mile to a mile and a half up the street), the bank and the grocery store (both are half a mile up the street).

It’s good that mom wants to get out. She needs to do more than just sit at her computer all day long. Plus it’s good exercise. But there a few concerns we have with mom leaving the house.

1. What if something happens to her while she’s out and none of us aware of her whereabouts?

2. She’s in her own little world…will she notice the car driving down the road as she crosses (or any other dangers)? 

3. How will people respond to her when they come in contact with her? Will they think she’s on drugs and call the police? (this might sound silly, but it’s happened to many people with dementia).

4. We have concerns about her withdrawing money from the bank as well as buying things that she’s not supposed to be buying (such as medicines).

We know that the time she usually leaves the house is in the morning between 10 and noon. She rarely emerges from her room before 10:00 am, and she is religious about her lunch and naptimes. She seldom ever tries to walk after her naptime (before dinner); I’m not sure why, but morning seems to be primetime for getting out of the house.

We’ve taken measures to ensure mom’s safety. We try to make sure that someone is there each morning. Each week, I take a morning, my Aunt and Uncle take 2 mornings, and sweet ladies from church have been taking 2 mornings a week. Mom is growing more and more resentful about having people there in the morning because she wants to do these things alone (likely because she knows she isn’t supposed to be doing these things). Today, she thought she would be sneaky and charge out the door before my Aunt and Uncle knew what was going on. Luckily, they were on the ball. He called me shortly after 10:00 to let me know that mom had escaped and that my Aunt ran after her. I will paste his account here (taken from his facebook update) to give you a more accurate synopsis of the morning’s events:

“More excitement today—more for my wife than myself. Shortly after arriving today at my sisters's house she got "happy feet". She emerged from her bedroom purse over shoulder raring to go walking to the bank and supermarket. In a flash she was out the door with my wife chasing her. Although she came with no hat, she knew it would be necessary to have to walk to the store with Deana lest something dreadful happen in spite of the sweltering heat. Fortunately my wife had a bottle of water with her. My wife hung onto Deana's arm to keep from being left in the dust. Deana is tall and Tina is short.
At the bank it was a fiasco. The teller asked for ID and it was as if she had asked in German. My wife tipped off the teller and called my niece to let the teller know about what was happening. The teller was very helpful and said there was "no money" in the account. (There was.)
Then she was off to the market without any money. Her goal was to buy some sleeping pills. A big no-no! While searching for the brand she uses, she opened the bottles and broke the foil seals to be sure they were her favorite ones. Startled, my wife told her she couldn't open the product. Big mistake! Deana snapped back telling her to stop telling her what to do!!
When she found her pills, it was off to the checkout stand. Problem was, she did not have the money to pay! After standing in line at checkout, the line behind her grew and grew. Frustrated, she spied the small change box on the checkout counter where people make charity donations. "I can use that money people have thrown away!" My wife had to convince her she couldn't have it. Finally she left it all behind and walk out of the store.
I'm betting next time she gets happy feet, she won't let my wife tag along. I can wait for that!”

I’m afraid my mom has worn my dear Aunt out today! My Uncle also updated me that mom is now giving my Tia Tina the silent treatment (that’s mom’s way of letting us know she’s unhappy with you!) I’m sure my poor dad will get an earful (from mom) when he gets home as well. Just another fun day of dementia.