Friday, December 2, 2016

Eventful Weekend


We had quite an eventful day last Sunday. Okay, the picture of the firetruck may be over dramatic, but I got your attention ;) (The firetruck DID make an appearance).

Let me start by reminding you of Mom's obsession with her jewelry. She no longer attempts make-up, but she still makes sure her earrings are in her ears and her wedding ring is on her finger. Except that it's not really her wedding ring. She dropped her real wedding ring in the driveway a couple of years ago (thankfully we found it and locked it away!) Since then, we've put a "cheap" ring on her finger. It was an adjustable flower ring that belonged to her mother. Over time, the rhinestones have all fallen out and the metal has discolored. Over the summer, when Dad went on a cruise with his sisters, he picked out a silver, stainless steel ring for mom to wear as her wedding ring. I thought the gesture was SO sweet; Mom was just content to have a ring on her finger and it fit her perfectly.

Fast forward a few months...Mom has been dealing with some swelling, mostly in her ankles. I bathe her 3 times a week and I haven't noticed any problem with her ring. On occasion, I will move it around and make sure everything is okay but apparently it's been a while since I've checked. Our caregiver texted me on Saturday to say that she noticed Mom's finger looked irritated underneath the ring and that it appeared to be stuck. The next day (Sunday), while family gathered for dinner, I looked at Mom's finger. Her finger was so swollen that I couldn't move the ring at all. My Aunt Peggy and I got some olive oil and attempted to remove the ring from her finger. But...it wouldn't come off. We tried and tried and could only manage to move it just beneath her knuckle. With the ring slightly moved, we were able to get a good look at the red ring that her metal one had left behind on her skin. It looked raw and very sore; the ring needed to come off and soon. But now we had a big problem: how do we get this ring off of Mom's finger?? The ring was so tight that we couldn't get a tool under there ourselves to cut it off. And with her lack of comprehension, many things could go wrong.

As we were all brainstorming, I wondered if we could call a non-emergency line and get a paramedic to come out and cut it off. After some discussion, my husband called the fire department who said that they could, in fact, come over and cut the ring off her finger with a special tool. Twenty minutes later, three firemen walked through the living room door and attempted to get the ring off Mom's finger as my dad, Aunt Peggy and I held Mom still. Mom nervously tapped her foot while she giggled; Aunt Peggy thinks she was giggling because of the firemen, but Mom giggles nervously when people are in her space and trying to hold her still. But who knows, maybe she was checking them out. Ha ha.


Did I mention that her ring was stainless steel? Note to self, stainless steel is almost indestructible! Her tough ring was barely scratched at the attempts of their special tool. Apparently it only works on soft metals. They gave it their best and then decided that this tool was not cut for the job. They had a saw that would work, but decided it was too risky because of her agitation and inability to hold still. They told us to take her into Urgent Care or the ER where they had the ability to sedate her through the process. I hate ER with a passion (none of us wanted to go that route) so I called Urgent Care first. They told me that they didn't have the right tools to do it, so we were left with no choice but to take her to the ER.

By that time, my Aunt Sharon (who is an ICU nurse) had arrived on scene for family dinner. Before taking her to the ER, we decided to give it one last try. Aunt Sharon held Mom's hand in a bowl of ice water, hoping to get the swelling down. Unfortunately, that made no difference and it was more difficult to try and keep her hand in the water. So...off to the ER we went. We sat Mom inbetween my dad and me in the backseat of Aunt Sharon's car while we made the drive across town. Aunt Sharon and Aunt Peggy came for moral support.

At the ER, my dad went to check Mom in, while Aunt Peggy went to get a wheelchair and I held onto Mom in the backseat of the car. We use the wheelchair for doctor's visits not because she can't walk, but because she can't follow instruction and she will either refuse to walk or walk in the wrong direction. It's easier to sit her down and push her where we need to go. We transitioned Mom to the wheelchair and to make a very long and boring story short, we waited in the ER for about an hour and a half before she was finally seen by the doctor. My Aunts took turns pushing her around the waiting room in her wheelchair for the entire waiting time in an effort to keep her from getting out of the chair and running away. Thankfully, it worked and we were able to keep Mom contained and somewhat comfortable.

Once Mom was called back to a room, they would only allow my dad to back with her, despite our protests. We tried to tell them that they would need a second person to hold her but they were insistent that only one person go back. Quite frankly, they were rude and uncompassionate. Of course once they got her back in the room, they sent one nurse out to get another to hold her arm (why didn't they come back for one of us??) Medical attention, particularly ER and hospital visits are extremely frustrating when dealing with dementia because most of the medical professionals really don't know what they're dealing with; at least, that's been our experience. At any rate, the report from my dad was that they were able to get the ring cut off without any sedation, but her ring was so strong that it broke their tool! They had to make two cuts and remove a piece, and then pull the ring apart. Luckily, there were no signs of infection on her finger, although it did bleed a little and was left very raw and red. Poor Mom. We've been keeping Neosporin on it and it seems to be healing well.

Needless to say, it was a big day for Mom, who usually spends quiet days at home or sitting on her chair in the front yard. She threw up in the car on the way home (she tends to get car sick and it was probably too much excitement for her) but she slept pretty good that night!

I didn't hear this firsthand from my dad (so hopefully I'm accurate in relaying this) but my Aunt told me something that my dad told her after everything was over. He told her that while they were back in the waiting room, Dad was sitting in front of Mom, holding her hand. She looked at him and leaned forward and gave him a kiss. What a sweet moment that must have been for my dad. It makes me tear up just thinking about it. Affection has been long gone but every now and then (very, very rarely), Mom will lean over and give Dad a kiss. It reminds me that even when all seems lost, she is still somewhere in there. My dad is her rock and the love of her life. Even though she can't express it in words, I know that she is aware of his love and support for her. I just know it!

Thursday, December 1, 2016

Thanksgiving 2016

Another Thanksgiving has come and gone. Mom hasn't known what holidays are for a couple of years now. I only get to spend every other year with my family for Thanksgiving; the odd years are spent with my in-laws and the even years are with my side of the family. It's been quite a while since I've enjoyed a real Thanksgiving with my mom. This morning, a picture popped up in my facebook memories. It was a picture taken of Mom and me during Thanksgiving, 2010. While looking at that picture, I realized that this was the last real Thanksgiving I had with mom.


In 2010, we knew that something was wrong with her, but we didn't know quite what it was (despite several appointments with doctors and specialists). Mom had come to Thanksgiving at my house that year and was finicky over the food. My Uncle was making the turkey the "wrong way" (he was smoking it on the BBQ), she was having aversions to a lot of the foods and she messed up on making her pies. I thought it strange at the time that her pumpkin pie had turned out runny; mom had always been a master in the kitchen. I remember being slightly embarrassed and confused with the odd way Mom was behaving. I feel a little ashamed of that now, but at the time I had no idea what was going on.

In hindsight, I wish I would've known that that would be our last real Thanksgiving with her. Rather than being annoyed or embarrassed, I would have embraced every moment of the holiday. Thinking about it now bring tears to my eyes. I miss my mom so much.

By the next Thanksgiving turn (2012) she'd received her diagnosis and even though she still somewhat understood what Thanksgiving was, she didn't participate in any of the preparations and she didn't eat any of the food. Thanksgiving 2014 came and went and she didn't even know what Thanksgiving was. This time, I was a little more mentally prepared in that I had no expectations of jogging her memory in getting her to remember what the holiday is. Those days are long gone. Everyday seems to mesh into the next for her; there are no special days anymore.

Thanksgiving dinner was held at my parent's house, as are all holidays nowadays due to the fact that we can't get Mom to leave the house and be comfortable anywhere else. My house is a little more ideal for family gatherings, with a big backyard and plenty of space for the kids to run around and play. Dad's house is a little tighter quarters, but, it is what it is and we make the best of it. There were two highlights of this Thanksgiving. One was that Mom came into the kitchen to make her peanut butter and jelly sandwich right during dinner time, which meant that we had two minutes of her sitting down at the table with the family during our feast! It might sound silly, but it was such a sweet thing to have her sit with us, if only but for a moment. The second highlight was getting this snapshot of Mom with some of her grandkids. Not all the grandkids were there that day, but I was happy to get this picture of her with the kids.

I enjoyed spending time with my family, but it's still really hard without Mom. I often wonder if it's harder having her there physically. It's a painful reminder of all that we are missing. I almost made it through the entire day without any tears ;)

Check back tomorrow for another post about the eventful weekend that followed Thanksgiving!!

Monday, November 7, 2016

Living For Today

Last month I turned 35. 35! I don't feel like I am in my mid-30's! This means that high school graduation was half my lifetime ago-that makes me feel old! I remember when my mom was 35; I was 15. Here's a picture of my mom when she was 35.

I spent a lot of time reflecting throughout this birthday and a terrifying realization hit me. When my mom was 35, she only had about ten good years left before dementia snuck in and robbed her of living. TEN YEARS. Of course she had NO idea that her time was limited. This sad reality got me to thinking, what if I only have ten years left? What would I do differently? What are some things I want to accomplish? What kind of legacy would I want to leave behind?

While I don't want to live my life in fear, the truth is that none of us know when our time on this earth is up. We've been dealing with Mom's disease for quite a few years now and I can't help but to think about all of the things she has missed. Fortunately, my parents had their family young and Mom had a few years of being a grandma (not nearly long enough); they were able to travel to places they wanted to go. But they were just getting started. Looking back in hindsight and knowing that, at my age, Mom's good years left were numbered has served as a reminder to me that our life and our time on this earth is precious. It is a reminder to live life to the fullest each day; to not put off the things we want to do in our lives.

One of the biggest things that I think about is the legacy that I will someday leave behind for my children. What kind of person do I want them to remember me as? I am trying to set the example of service, compassion and love for them. I know I fall short in a lot of ways, but I hope that they will remember me as someone who cared deeply for others and looked to help those in need. I want them to know that I am a woman of faith, who loves the gospel of Jesus Christ. I want them to know how fiercely I love them. A couple of years ago, I started writing journals to each individual child, expressing my love, experiences with them and words of wisdom. This is something I struggle to keep up with, but if I died tomorrow, they would know very clearly (by reading my words) how I feel about them.

When someone we love leaves this world, memories are the most precious things we are left with. If I've learned anything on this journey, it is to make each moment count! Memories are what I will leave behind and I hope that they're good. Now is the time to take that trip (or, at least, start saving for it!), to work through my fears and take risks of the things I want to accomplish, to take every moment to snuggle my kids or read them a book. Life is too short to spend on negativity, to worry about what people think all the time, to hold a grudge. Tomorrow isn't guaranteed but for today, I am here so I will make the best of the time I am blessed to be alive!


Friday, September 23, 2016

Waiting for the Inevitable

I went to a funeral this morning. In fact, I sang at the funeral with my sister. She was a lovely woman from our church (and the mom to one of my sister's close friends); she passed away from a stroke and she also had cancer.

As I sat there, listening to the words of affection that her children spoke, I couldn't help but to think about my mom. And the inevitable fate that awaits us. Since my mom's diagnosis, funerals haven't been the same for me. I look at things differently; I know that death is lurking around the corner. I mourn for the person whose funeral I'm attending, but I also mourn for my mom as I reflect on the emotional loss that I've gone through and anticipate the physical loss I will, in time, endure. I can't help but to think about how my mom's funeral will be. Will there be a lot of people in attendance? Who will come to honor her and to support our family? Who will give the eulogy? Will I have to speak? Will we laugh at the funny memories of Mom or will we be too stricken with grief to smile? What songs will we sing? Will I have to sing? I can't sing at my mother's funeral. Even if it was her request before she was sick. (Sorry Chris-I think you're going solo).

I feel the pain that the family members are experiencing at these funerals because I am experiencing that same pain. I have been experiencing this pain over and over for the past 4 years. I have gone through the emotional loss of my mother, but her physical presence won't allow me to move on. In a conversation with my sister the other day, I made a comment that I almost envy those who have lost their parent quickly in a stroke or accident. It isn't dragging on for an indefinite amount of time as they sit back and watch someone they love deteriorate for months or years on end; they aren't constantly wondering, month after month, year after year, is this going to be it? I'm not saying that their loss is any easier. A loss is a loss; it's hard any way it comes. But the heart cannot begin heal while it is still in battle.

I feel guilty for having these thoughts. More times than not, I don't know if I am quite ready for that physical loss yet. I don't know if I ever will be. It will be hard and it will be another kind of pain to work through. People will say to enjoy what time we have left; enjoy my moments with her. I do feel comfort in hugging her, stroking her hair, telling her that I love her, but how can I say that I enjoy watching my mom struggle and lose her abilities everyday? There is very little left of my mother. Every now and then I may get a smile out of her, but for the most part, she hardly responds to any of my interactions with her and it is another reminder of everything I've lost.

I love my mother. I love her and miss her so much it hurts. I don't know that the pain will ever go away; the battle may end but the scars will remain. But knowing that she is free from pain and from the prison of her body may be the first step to start healing from the nightmare that dementia has brought into my life.

Thursday, September 15, 2016

"Mom"-proofing the House

When my kids were little, they used to get into things that they weren't supposed to. On several occasions, each of them had gotten into my make up and rubbed it all over their faces. I remember one time, my son got into the Desitin and rubbed it all over his cheeks. Vaseline, baby powder, flour...those are just a few of the things they had fun with. One of my favorites was the time that my daughter took apart her peanut butter and jelly sandwich and smeared the insides of the sandwich all over face!


My kids have long since outgrown the phase of getting into things and rubbing it on their little faces. But my mom, on the other hand, has been obsessed with rubbing things on her face. It stems from her make-up obsession, which you can read about in a number of previous posts. Her routine has changed over time; she went from putting on make-up nicely, to wearing dark eyebrows and foundation so thick you could peel it off,to applying make-up in all the wrong places of her face. She was making such a terrible mess with all of the make-up that my dad had to phase it out, leaving her with mostly empty containers in her drawer. She no longer puts on make-up, but she does go through the motions of applying it. After I get her dressed from her shower, for example, she will grab a tube of mascara and, without opening the lid, rub the plastic tube all over her face. Sometimes she will dip a powder sponge onto the lid of her eyeshadow or loose powder and rub it on her face. The motions of putting on make-up seems to be the last ritual left that she remembers, though I don't think she understands the significance of it. She has been in the habit of rubbing something on her face, and that compulsion still lingers.

We aren't limited to make-up anymore. It is the act of rubbing something-anything- on her face that compels mom and it doesn't matter what it is. It used to be whatever she could find in her bathroom: toothpaste, deodorant, soap, shampoo, ky-jelly (we got a good laugh out of that one), lotion, diaper rash cream. Dad removed everything from her bathroom in an effort to stop her from putting things on her face. Not to be deterred, Mom recovered more items from the front bathroom: Dad's after shave, shaving gel, more soaps and shampoos. So, we put a childproof handle on the doorknob. Problem solved. Except that now she opens up the peanut butter containers and rubs that on her face. She got into the laundry room and found cleaners and laundry soap and started to put that on her face (Dad now keeps the laundry room locked). Her newest thing has been opening up water bottles, dumping the water onto her hands and then "applying" the water to her face. And within the past week, she has been opening up the curio cabinet, taking out a crystal bunny knick-knack, and rubbing that on her face! Luckily, Dad is able to lock the curio cabinet; we were afraid she was going to break something!

Needless to say, the house is being childproofed all over again and Mom's skin has been red, bumpy and irritated. A couple of weeks ago, it was so dry and red that it started to peel. I brought over face moisturizer and we've been using that on her face twice a day. That, and locking up everything she could possibly rub into her skin, has helped her skin to improve.

I suppose it's only a matter of time before she loses this last sense of herself that she has been grasping onto. It seems like just yesterday that she wore blue eyebrows, and now that is gone. This, too, shall pass. And when it does, it will be bittersweet.

Friday, August 26, 2016

Swollen Ankles

While bathing and dressing my mom on Monday, I noticed swelling around her ankles and feet. We've had some home assessments this summer from nurses and one of the things they always checked was her ankles. So when I noticed the swelling, it was a red flag for me. The swelling goes around the perimeter of her feet, but that part is minimal. What concerned me most is that on the front part of her feet (between the ankle and center of her foot) there is a round "pocket" of swelling. It's hard to describe, but it resembles somewhat of a golf ball, except instead of being hard to the touch, it is soft and gel-like. As Murphy's Law would have it, a social worker from a home health company came out to the house last week, assessed mom and closed the case since physically, there is nothing wrong with her. So I put a call in to her doctor, hoping he might call me back and discuss the swelling before we were tackled the difficult task of taking her in to the office. I was hoping to bypass a doctor visit and instead, have a house call from a nurse again. We have not had great communication and call backs from the doctor in the past; I was afraid I would be sitting around waiting for 3 weeks before we made contact so I decided to call the home care company and see if they could reopen the case. Unfortunately, they said we would have to start the process all over again at ground zero (referral, assessment, etc). Fortunately, the man I spoke with was able to call the doctor's office and received a call back quickly. Within two hours of his call, he had an order for a home nurse to come and assess mom.

To make a long story short, the nurse came by yesterday and agreed that the swelling looked very odd, and then admitted that she'd never seen anything like it. She said that it looked like a fatty tumor but she'd never seen it on an ankle before. So...there wasn't much resolution to the visit, other than the nurse reporting her findings to the doctor (we're waiting to hear back from him on whether or not he wants to see her, based on the findings) and the nurse is going to put in a referral for physical therapy for Mom, due to the fact that she's had a couple of falls (and couldn't get up) over the past two months. We'll see if that referral goes anywhere and if Mom would even mentally be able to participate in physical therapy. In the meantime, we are waiting to hear from the doctor on whether or not we need to take her in. Honestly, I'm not sure what he will be able to do if we took her in. A biopsy? Fat chance in getting her to cooperate with that. And anesthesia isn't a risk we want to take at this point.

I know some of you reading might ask:

Could she have twisted her ankle? It's possible, but unlikely that is the cause because it's in the same place on both ankles.

Could it be her medication? The nurse checked the interactions of each medication and no red flags showed up. She did start taking a new medication beginning of July (trazadone), but you would think side effects would've shown up sooner. The only medications she takes are trazadone, Ativan, and methyl-something-with-a-long-name (a hormone to stop her menstrual cycles).

Is she drinking enough water? She seems to be drinking at least 32 oz. a day. It's been the same for a long time...no sudden drop in her intake of fluids.

Is her blood pressure okay? Last week it was slightly elevated, but she was also very agitated with the cuff around her arm. Yesterday, it was in the normal range (110/80).

Maybe it's the socks? My Aunt (who is a nurse) suggested it might be the socks creating a tourniquet effect. I changed her socks right away; that was on Monday and today is Friday and there is no change.

Sooooo....I guess we wait for a call from the doctor and go from there!

Thursday, August 18, 2016

Neighborhood Watch

Last night Mom gave us a good scare.

I was sitting on my couch with my husband around 9:00 pm, watching a TV show in my jammies and unwinding from the day. My phone rang; it was my sister. I answered the phone and when she hesitated for a second before answering, I had the sense that something was wrong. Her response confirmed it,

"Has Dad called you?" she asked, a slight panic in her voice.

"No, why? What happened?" I asked, sitting up straight, on alert.

"Mom is missing," she replied.

I nearly jumped out of my seat, exclaiming, "What do you mean she is missing??"

My sister quickly filled me in on what had transpired. She and her son had been at the house while Dad was looking at a job. When they saw Dad's truck pulling into the driveway, they gathered their things to leave. They unlocked the front door and let themselves out, but didn't lock the door behind them because Dad was getting out of his truck and coming up right then. It didn't seem likely that Mom would get out without someone noticing or crossing paths with her. Yet, it happened.

I jumped out of my seat and dialed my dad's number, trying to decide if I should leave the house in my jammies to go look for her or change into real clothes first (okay, let's be honest here...the issue was more about a bra than it was the jammies, ha ha). Dad answered his phone after the first ring and I asked him if he had found Mom. Thankfully, he said that he had found her. I breathed a sigh of relief and tried to calm my racing heart as Dad gave his side of what happened. Like Christina had said, he had just pulled up and Chris and Jeremy were walking down the driveway. Somehow in that time, Mom must have snuck behind Chris and walked down alongside Dad's huge work van as he was on the other side (hiding her from his view) and made her escape. By the time Dad had made his way up the porch, she was already gone and he had no idea that she had even step foot out of the house. He came inside the house and got settled in when, a short time later, he heard his doorbell ring. He answered to find a man standing there, who said, in a thick, Spanish accent,

"Your wife is out."

It took Dad a moment to understand what the man was saying, but then he followed him outside and walked up and down the street, finding no sign of Mom. Dad was a little suspicious of the man, wondering if he was trying to scam him or something, but the man told him to go check in his house. Dad walked through the house and the panic set in when he couldn't find Mom. He went back outside and-I can't remember if he said he walked or got in his car, but I think he said he happened to walk out at just the right time-he found Mom crossing a street in the neighborhood. My guess from Dad's description is that the man who showed up at the door was the husband of Mom's friend, Maria, who lives up the street. They often see me walking with her and they always try to engage Mom and say hi; they know the situation. Thank goodness that he happened to be outside at 9:00 at night and recognized that my mom was wandering alone. I am so grateful for neighbors who keep an eye out for us. I hate to think of how it could've ended had he not been out!

As I was on the phone with Dad, he found her ID bracelet that we'd had made for her a few years ago (that she would never leave on). I told him that she is to the point now where I don't think she can get the bracelet undone. After struggling himself with the clasp, Dad finally got the bracelet on Mom and as of this morning, when I checked in with the caregiver, it is still on her wrist. Even with our lock system, Mom is sneaky...we never know when she might get past us!