Grandma vs. Ryder

A few weeks ago, I was helping mom get ready after getting her out of the shower. She still goes through the motions of doing her makeup but she gets very confused about what goes where. One day, her mascara became an all purpose cosmetic: she used it for her eyebrows, her eyelids and lashes, her blush and her lipstick. On this particular day, she reached for a tube of pink lipstick and took the lid off, staring at it as she tried to make sense of what it was. Then, before I could stop her, she rubbed that tube of lipstick all over her cheeks.

Later that same evening, my 4-year old was entertaining himself while I was getting dinner prepped. I could hear him upstairs and figured he was playing in his room. He came downstairs and sang my name, "Mommy...."

I looked up to see a huge grin of satisfaction on his face, his cheeks bright pink, as he held his sister's tube of lipstick in his hand.

And just to note-he did NOT see grandma's lipstick incident earlier that day. This was pure coincidence. What are the odds?

I've thought about this several times over the past couple of years: how similar my mom and my toddler/preschooler are. There are many phases that they seem to go through together.

For example, they both wear their shoes on the wrong feet. If I don't get each of their socks out for them, they wear mismatched socks. There have even been times when both mom and Ryder wear different shoes on each foot.


Similarly, they have both been known to wear their clothes inside out and/or backwards; although Ryder hasn't done that in quite a while.


They both really love peanut butter and jelly sandwiches. Grandma probably loves it more than Ryder, but pb&j is always the comfort food for him!


They both require some assistance and supervision in the shower. They both need help rinsing out their hair. Ryder will use half the bottle of shampoo if I don't watch him and mom is no different!

Lately, my mom has been trying to sneak her pb&j sandwiches into her room. Oftentimes we will find them hidden under her pillow. When we caught her smuggling the sandwiches in towels and sweatshirts, she found a new hiding place: her pants. We get a good chuckle out of this one. I can't tell you how many times I've caught my 4 year old sneaking candy in his pillowcase and yes, even down his pants!!

Sometimes we just have to sit back and laugh; I even find the things mom does to be somewhat endearing at times. But if you sit back and think about, it really is sad. My mom is operating on a toddler level at this stage of her life. At times it has even seemed like I am caring for two toddlers, the only difference is that my son is learning new things each day; mom cannot learn anymore. It's funny and silly when Ryder sneaks things in his pants or puts lipstick on his cheeks because it's a phase that we know he will outgrow. I admit, we chuckle sometimes when mom does it too. But the sad part is that, while Ryder is learning the correct way to do things, mom is "unlearning" everything she learned in those early years of life. Every week seems to bring about new changes and we see her slip farther and farther away. The farther she slips, the harder it becomes to watch.

Who's That?

As mom's disease progresses, her routines and rituals continue to change. One week, we have things figured out. The next week, everything is disrupted. One thing that we have learned with this disease is how to be resourceful. Sometimes you've got to roll with the punches and take it one day at a time.

For so long, mom was so strict on her daily routine: wake at 8 am, take medicine at 8:30, go to the bathroom at 8:35, eat breakfast at 9:00, sit on the bed and wait until shower time at 10 am....you get the point. Nowadays, there's not a whole lot of rhyme or reason to her day. She still wakes in the morning (long before 8 am now) and will drink her "slim fast" and take her medicine. After that, we can't be quite sure what she will do at what time. We can no longer leave her medicines out all day for her to take at the designated times because she'll take them all at once. She doesn't shower unless dad or I force her in. Some nights, she is up at midnight, fixing her sandwich for lunch. Other times (like today) she eats her lunch at 8:00 in the morning and skipped her afternoon meal. Sometimes she'll take an hour nap, other times she'll nap for two minutes and then be up again. We never know what each new day will bring!

One of the things that has been especially helpful for us is mom's love for her computer games. On her old schedule, she spent a few hours a day in front of her computer. Nowadays, she will sit down for a few minutes and then be up doing something else before returning to the computer for another minute. She isn't spending a lot of time in front of the computer, but she is still playing a game or two of spider solitaire each day (I haven't noticed if she still plays the tile game she was playing).

So what does mom do all day? you might ask.

Well, let me tell you.

All day long, she paces back and forth from her bedroom to the living room. She walks down the hall, opens the front door and checks to see if the screen door is unlocked. When she sees that it's locked, she pounds on the door. If there is a passerby on the street, she will call out,

"Hello hello?"

She bounces between the front door and then over to the couch where she hangs over to peer out the window. She notes whether or not "his" (dad's) truck is there. If anyone is outside, she will then knock on the window to get their attention. After doing this back and forth a few times, she then checks the garage door to see if she can get it open. Of course she can't, so then she usually goes back to her bed where she may rest (with the sheet over her head) for a few minutes, followed by a brief trip to the computer and then back out to the living room once again. And this is how she passes her time. EVERY. SINGLE. DAY. I'm thinking that her short term memory has greatly declined now as well.

On the bright side, she is no longer shutting herself in her room all day; everyone gets to enjoy her presence a bit more! ;)

This picture was one that I took a couple weeks ago when my dad was working in the front yard. Dad was never alone while working! Mom was there, knocking on the window and calling to dad. She wanted him to put out her night time medicine and at one point she even went to the kitchen and grabbed her glass which she knocked against the window! Boy, she is persistent!

In other strange news...we took mom to the lab as part of a physical she has scheduled. She hasn't had her blood checked in a couple of years; we figured we were overdue. We checked on her lab results today, and as far as I can see, all of her numbers are in the normal range (except her LDL was a little high). I thought for sure that her peanut-butter-and-jelly sandwich-diet might reflect deficiencies or other health issues (blood sugar, cholesterol, etc) but apparently she is faring well. It's so strange to me that she can be doing so well physically when her mental capacity is severely altered. It leaves me to wonder, how long will she have to live with this disease?

Mom the Mischief Maker

Last Friday, mom got into a little bit of trouble.

I got the phone call right after I had arrived at my husband’s work-I surprised him at the office for his birthday lunch date.

“Where are you at?” my dad asked. I knew right away what that meant.

“What trouble is mom getting into now?” I asked with a sigh.

Dad filled me in on the details of the past hour. Mom had a lady from church over “babysitting” her for the day. She called my dad after mom had revealed that she found some money and had planned to walk up to the store which, as we all know by now, means she is attempting to buy more medicine. Apparently mom ran out the front door, leaving her caregiver in the dust.

I apologized and told dad I was out (there’s no way I would make it in time even if I wanted to). I hung up the phone, wondering the same thing dad was: where the heck did mom come up with money?? Dad has gone to extra measures to make sure there is NOT money laying around for mom to get happy with. Yet somehow she found money and was off on her mission.

By the time the hubby and I arrived at our lunch location, I received another phone call from a private number. I answered the phone, knowing that somehow the call was related to mom. Yep. It was Mike from Stater Bros. [There are few cashiers at our local grocery store who are familiar with mom and our situation and have asked for my number to call me when mom wanders in alone. Mike is extra attentive, as his dad also suffers from FTD]. Mike let me know that mom had wandered in, alone, and was in the medication aisle. He asked what I wanted him to do and even went so far as to say he could refuse her the sale. But…that’s only if mom chose his check stand and I didn’t want her to create a big scene in front of everyone. I told him thank you for keeping tabs on her and that we’d confiscate the medicine when she got home.

I hung up and tried to focus on my hubby and enjoy our lunch together. Of course in the back of my mind I was worrying about what was going on with mom. A few minutes later, I got yet another call. This time it was my sister. Apparently, when I was unavailable, my dad called her to see if she could get the situation under control. Luckily, she works close by, was in-between clients and was able to go track mom down. When she arrived at the supermarket, she found mom’s caregiver-for-the-day standing outside the door (I guess she was afraid of confrontation with mom? Or she didn’t know how to handle the situation?) Christina (my sister) walked inside just as mom was approaching the check-out counter, medicine in hand. She walked up to mom, who I am sure gave her a glare as she said something like,

“Don’t you say anything to your dad about me buying this.”

Christina stood patiently by as mom proceeded to pay for her medicine. Mom handed the cashier her dollar bills and the cashier remarked,

“Wow, these are some old dollar bills. Where did you come across these?”

My sister glanced over to see an assortment of silver certificate $1 bills, $2 bills and some old coins.

Mystery solved. That’s where mom got the money from: she had found dad’s old coin/money collection.

“I’ll just take those and pay for it with my debit card,” Christina said, as she retrieved the old money back from the cashier. Mom was insistent that my sister return her money, but was soon quieted when she realized that Christina would pay for her medication. As soon as she got what she wanted, she was out the door. Christina tried to convince her to take a ride home, but mom was insistent on walking. So my sister followed behind her in her car and made sure she got home safely. She followed mom into her bedroom and quietly observed her as she hid her loot.

One more disaster averted…at some point our luck is going to run out! At this stage in the game, we are looking into full-time, professional care for mom. :(

"I Hope I Don't Die Young"

I was always a very sensitive child. It didn't take much to hurt my feelings. My mom used to always tell me that, one time, when I was a toddler, she said something that had upset me (I can't remember what it was) and in response I crossed my arms, looked up at her and with a pouty lip, exclaimed,

"You huwt my feewings!" [Interpretation: "You hurt my feelings."]

[I just had to throw this cute, little pouty face picture. Because, let's face it, blogs are far more interesting when there are pictures].

When it came to any kind of reprimand, it was the same scenario. I was the kind of kid who cried anytime she got into trouble. A spanking would absolutely devastate me. If someone called me a name or said something unkind, it was hard to hold back the tears. Likewise, when I was reprimanded, it hurt my feelings as well. One of my parent's favorite stories, which my mom documented in her journal, was about a time when I was having some sort of disagreement with one of my siblings. My mom told me that I was being selfish, and through my hurt and emotional distress, I yelled,

"I'm not selfish! I'm sharing my temper with you!"

As I blossomed into a teenage girl, my sensitivity only magnified. My parents used to joke that if you even looked at me the wrong way, I would cry. I think that is a rather dramatic statement; I wasn't that bad. But I did have a tendency to wear my feelings on my sleeve, and they got hurt very easily.

Life experiences have toughened me up, so to speak. Though I am still somewhat on the sensitive side, I no longer cry at the drop of a dime. In fact, I've almost gone the opposite direction. I rarely ever cry these days. I don't know if it's necessarily a good thing, but I usually suppress all of my unpleasant feelings inside, until I can no longer hold it in anymore. I would say once every month or two, I end up having some sort of meltdown, where all the emotions that I've bottled up finally explode.

People ask me frequently, "How are you doing [emotionally] with your mom's situation?"

My younger self would be a mess. Thank goodness for those life experiences and the tougher skin it has grown me! It is definitely an emotional roller coaster. There are times when I feel very strong and put together, and other times when I feel overwhelmed at the curve ball we've been thrown.

This past week has been another drop on the rollercoaster for me. As I look through old pictures, and remember my mom the way she was, I feel sad at our loss. I miss my mom. Even though she is still here with us (and I am grateful for that) I really miss my mom for the way she was. I miss having my confidant. I miss having someone to give me parenting advice when I need it-or any advice, for that matter. I miss having my friend to shop with. I am grateful for the friends and family members who have stepped in to try and fill those gaps for me; nobody can take the place of mom.

My mom has been very tired over this past week, and having more "severe" pains due to her "degenerative disk, narrowing spine" disorder that the doctor claims she has. It seems like every day that I have seen my mom this past week, she has made comments about dying young.

"I've just been feeling so severe lately. I sure hope I'm not going to die young. That would be so sad. I just hope I get to live a long life, too, and not die young."

As she was leaving my house the other night, she stood up from the couch, wobbling a little and commenting on how "weird" it is that when she gets up she is a little unstable. I guess the "severity" of her wobbling made her think again about a young death. This time, as my dad held her arm while they walked out the door, she added a few lines to her dialogue for him,

"I sure hope I don't die young. That would be so sad. And then you would marry someone else and I don't want you to marry anybody else. That would be so sad. I would be so sad. But you could be like your grandma, she never got married again when your grandpa died when she was still so young. She never got married all those years, she was by herself and she was okay."

She has such a childlike innocence in her voice when she speaks. She has no idea about her disease (though we've tried explaining that she has dementia, she doesn't comprehend what that means). She has no idea that her life will be cut short. It breaks my heart to hear her express her anxieties about dying young. What do you say in response to those comments?

Most of the time I try to redirect the conversation and I don't go back to reflect on what she is saying. Lately, because it has been brought up in at least one conversation per visit with her, it's becoming harder to ignore. I can sense a breakdown coming on. If I just stay busy, and don't think about or dwell on it, I am okay. It is in those quiet moments, when I am alone with my thoughts, that my sensitive, emotional side returns.

I suppose that is partially why I have become so proactive in all of this. It helps to occupy my mind and my time doing something positive, rather than dwell on the negative.

One thing I know for sure, I am learning to appreciate life and the time we have left with her. Live life to the fullest. Never pass up a moment to tell someone you love them. Do not hold onto grudges, time is too short. Never put off for tomorrow what you can say or do today. Live your life with no regrets. I wish we had learned of her diagnosis earlier on, because I feel like a lot has been wasted. All we can do is move forward and make the best of what is happening now.