The Lonely Road

The other night, as my husband and I were laying in bed, I asked him the question:

"If I end up with dementia, would you take care of me or would you put me in a facility?"

There have been many thoughts and observations that led up to me asking him that question. I've been thinking about my mom a lot, reflecting on the last few years with her, wondering if I may inherit the same fate. Sometimes it feels like she is disappearing from the world; like she's the invisible woman that only I and my close family can see. Every now and then this discussion comes up with my dad as we reflect on those who have and have not been there for us in this journey.

The fact about dementia is that it is a very lonely disease. It isn't like other terminal illnesses where you are given an approximate amount of time to tie up your affairs and say your good-byes (and doing so while still in your right mind). Rather, it is unknown and most often very long and drawn out. In the beginning, people are shocked with the diagnosis; they express their love and condolences. But as time wears on, people (understandably) go about their lives and lose interest. The person with dementia is left alone to lose their mind and memories and abilities, day by lonely day.

We've been very fortunate to have many family and friends step up to comfort us and help ease to our burden throughout this journey. When Mom was initially diagnosed, there were many who expressed their condolences. We had offers of caregiving help-physically and even financially. But there's a huge difference between talk and action. With as many people who have reached out to us, there are equally as many who have rarely acknowledged the situation. People that my mom have worked with or served with at church; women, who at one time or another my mom has considered to be very close and dear friends, who have never once visited her since her diagnosis or even call to ask how she's doing (the same goes for my dad). There are family members as well who rarely, and some who never, stop by; family members who my mom was very close to, who never pick up the phone to call my dad and ask how she, or even how HE, is doing.

Life goes on, and it has to. Everyone has their own struggles to face in life. We understand that, but it's lonely all the same. And I would be lying if I didn't say that it's been hurtful that certain people haven't called or visited over the past 5 years. When we think of the life that Mom led, loving and serving and giving to others, it's sad to feel as if she's been forgotten about that easily; that maybe she didn't mean as much to people as they meant to her.

And maybe that's the not the way it really is. Maybe she's not really forgotten. Everyone handles grief differently. Sometimes people don't know what to say or how to react. Many may feel that she doesn't know them anyway, so there is little purpose in visiting (though the visits didn't happen even when she did still remember certain friends and family members). I've been very transparent in sharing our journey so maybe some of these people read my blog, unbeknownst to me, and feel that they already know what's going on. It's a hard situation all the way around.

A couple of years ago, I had somebody close to me go over a couple of times to sit with mom. She was friends with mom but I wouldn't say she was super close to her; she was much closer to me. After the second time, she told me, "I just can't handle seeing your mom like this, so I won't be going over anymore." That comment left me feeling so angry and hurt and alone. As hard as she claims it was for her, imagine what the pain must be for my dad to see his sweetheart decline every single day. Imagine how hard it is for my mom's children to watch this disease take her over and transform her into a stranger; how hard it is for us to change roles as we bathe her, change her, care for her; how hard it is for our kids to lose their grandma. I don't think this person intended to hurt my feelings at all. But since that day I can't recall a time she's asked how my mom is doing (though I occasionally volunteer information) and our relationship hasn't been the same. I feel abandoned. The avoidance from friends and family members does cause pain; not just to me, but to my dad as well.

I don't write this post to guilt or shame anyone, but rather to help people to understand what every dementia caregiver goes through. There is a common theme in many of my online support groups and that is the feeling of being alone, especially for the main caregiver (most often the spouse; in this situation, my dad). I share this for those who may wonder how you can help ease someone's burden; I give the following suggestions:

1. Don't avoid. This is our reality EVERY. SINGLE. DAY. Please don't pretend like it's not happening. Don't be afraid to ask how someone is doing-both the person affected and the caregiver. I always feel really grateful when people ask how my dad is doing because they recognize that this is just as much a struggle (if not more) for him than for my mom. You don't have to talk about it every single time you interact with the person, but don't be afraid to check in now and then. You aren't going to offend or upset a caregiver by talking about it!
2. Absolutely, do not say or offer anything that you don't mean! We've all heard it: "Let me know if there's anything I can do to help" and then when called upon for help, there's no response. I think that's worse than not saying or doing anything at all. It's happened to every caregiver out there. If you are serious about wanting to help, it's more helpful to give specific suggestions of what you can do. Sometimes you may not know what to do, and that's okay! Just don't offer anything if there is no intention of following through.
3. Give a phone call or a visit now and then. Even a note or a card in the mail can brighten up a caregiver's day. I know it seems intimidating, but it is appreciated and shows that you really care. I know it means a lot to my dad when people have dropped off treats or sent cards, or even called to check in on how they're both doing. Additionally, keep in mind that people who care for loved ones at home have little social outlets. It's nice, sometimes, to have interaction with other people. It can get really lonely.
4. Be mindful that caregiving is a 24/7 job. A lot of times, people will call and ask my dad for help with something, and he's not one to say no. He always makes time to help people. And truthfully I think sometimes he likes it because it gives him another outlet to interact with people. But...people may not give thought that in order for him to go out with them or to go over and help, that means he has to have a caregiver at home that he is paying (or one of us has to come over and sit with mom). It's nice for a caregiver to be able to get out; maybe help provide a way so that they can get out now and then!
5. Don't be afraid to recognize special days: birthdays, anniversaries, etc. I have heard from many caregivers who feel sad when people close to them fail to recognize these special days. Perhaps they feel it will upset them to say anything; not bringing it up doesn't make us forget about that day. Be mindful that holidays are going to feel especially sad and lonely, especially while still caregiving as the person is still here to care for. We are grieving for the loss of someone who is still alive and unless you've been through this, it's difficult to describe the many emotions that go with it.

Before I end this post, and because I don't want to come off as ungrateful, I want to be sure to recognize that we have been luckier than so many other caregivers out there. Though it hurts with the people who have seemingly deserted us, there are so many who have been and continue to be here for us and for that we are sincerely grateful. Sometimes it's even been strangers, or friends who never even knew my mom before dementia, who have shown us incredible support! Those people have truly lightened the load and I can't tell you how much we love you for being there for us.

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!

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!!

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!

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.

"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.

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!

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!

A Little Respite

On Monday, I returned from a 10 day family vacation. Our friends let us borrow their RV and we drove through Utah and Idaho to visit family, attend a special event for my daughter, Maurina, and enjoy the great outdoors. One of the best parts of this was that my dad was able to join us in his fifth wheel (travel trailer) as well! We rarely get to vacation together these days because somebody has to be home with mom. But it was important to Maurina (and me) that we both be there, so my sister stepped up to the plate and took care of mom while we were gone. I'm so grateful to her and to our other caregivers for making this trip possible and taking care of mom while we were gone.

For the first time all summer, I was able to really relax and enjoy myself. Even while I was in Arizona, I was busy answering phone calls, regarding mom, every single day. Mom is constantly on my mind and I worry about her when I'm way. The days leading up to vacation were filled with stress and sadness for me (I've had a hard time shaking off this "down" feeling lately) but I was determined to relax and enjoy time away with my hubby and kids. As much as I worry, I know my dad worries even more being away, but the time away was good for both of us. For the first time in a long time, I saw my dad happy and enjoying himself. We talked, we laughed, we played games, we went fishing...it was almost like old times. Except we were missing Mom.

There were moments of reminiscing, remembering the trips we used to take when Mom was well. Sometimes I let myself daydream about what Mom would be saying or doing if she was still with us; things we did when she was with us. I imagine her playing with the kids or taking them on walks around the campground. I think about how she and I would've gone off to the scrapbook store while the guys were shopping at Cabela's or Camping World, like in times past. I picture her scolding us for not wiping our feet before walking inside the trailer. Times have changed and she is surely missed, but thankfully I was able to still have a good time and not dwell on the sadness that has been consuming me for the past few years. I kept my mind busy fishing and paddle boarding and laughing and making memories with my children.

For the first time that I can remember, I didn't want to come home from vacation. Usually, by the end of a long trip I'm ready to go home and sleep in my own bed and get back into a routine. This time, I really didn't want to come back home. It's hard to put it all into words, but coming home meant that it was back to reality; back to my routine of running here and there, of bathing Mom and watching her decline each day, wondering how much time we have left; the sadness envelopes me again. When I was away, I felt carefree and happy. Now, I get my daily reminder of what I've lost; what I am losing. It's a complicated thing to grieve for someone who is still living. I don't think it's something you can truly understand until you've experienced it firsthand.

Hard as it was to come back to reality, I was happy to see Mom again, to hug her and to kiss her and tell her that I've missed her. But seeing her also reminds me of just how much I miss her. This vacation was something I really needed, to refresh and reflect and to give me a new surge of energy to get through the next little bit with Mom.

Here are some pictures of our trip, for your viewing pleasure ;)

Everybody Needs a Little Time Away

I'm happy to report that we survived the week that Dad was on vacation without any major incidences!

I think that this trip was a big eye opener for my brother. He insisted that we didn't need caregivers while he was there; he was working from home on his computer for the week. I told him what we were dealing with, but until you are here to see it firsthand, I don't think you can really understand. I think he mostly just thought he needed to be there to make sure there wasn't a fire or big emergency; much has changed since the last time he was here. Needless to say, I had to call the caregivers back to come in and help for a couple of those days. Natalie and I spent a lot of the day there as well, but it's difficult to keep the kids cooped up in dad's house all day (there isn't much for them to do there), especially when Joe was trying to work, so we had to get them out of the house for at least a little bit each day. All in all, Mom was safe and taken care of and Dad was able to go and have a good time away from the stress and sadness of his daily life. I am really grateful that I had Joe and Natalie here for the week to help out, if for nothing else than for my emotional sanity!

After dad returned, I went home with Joe and Natalie for a week. We started this tradition a few years ago-to spend a week together at each of our houses every summer. It gives the kids time to bond and play and it gives Natalie and me the chance to sew, stay up late watching movies and just hang out! Usually I drive out there for a week and bring her and the kids back with me, and then Joe will drive out to spend a long weekend with us and take his family home. This year it worked differently and most of our time here was watching Mom, so I was really looking forward to our time in Arizona.

It was really refreshing to spend a week away. Although I was still on the phone every day handling some things with caregivers and Mom's doctor/nurse (post to come on that topic), I was able to refresh and spend time with my best friend. This has been a very difficult summer for me. With Mom's disease progression and having to do things I never imagined I'd have to do, having the kids home full-time and fighting with each other, and me deciding a few months earlier to go off of my anti-depressant (probably not the best decision I've made), I have been overwhelmed emotionally. I don't like talking about the fact that I had to go on anti-depressants a couple of years ago, but it is what it is. It's a sad reality for a large number of family caregivers. The truth is, I've been extremely emotional. It seems like everyday I am on the verge of tears and probably once a week I end up with a crying fit. I have felt stressed out, tired, discouraged, angry and lonely...to name just a few emotions. One close friend of mine remarked to me that my countenance has changed over the past few months. Although it's hard for me to hear that, she is right. Many days the despair and grief are almost too much to bear; it's hard to see the sunshine with the dark clouds looming overhead.

All this to say, I've really needed my best friend. My family likes to tease Natalie and me for being so outspoken on our BFF status. We like to have fun with it too (if they're gonna tease us, we're gonna annoy them!) and we've made BFF shirts and bought matching outfits and had photo shoots with it all. We might be a little crazy but that's okay, we have fun together and sometimes I just need to laugh. They can make fun of us all they want, but they don't really understand our relationship. The truth is, I feel like Natalie is the one person who really "gets" me. This isn't to say that my other friends aren't great; truly, I've been blessed in the friend department and I have a lot of great friends in my life who are there for me when I need them. And let's not forget to mention my husband; I'm really lucky he puts up with me. I just feel like Natalie and I get each other; we have a special connection. We've both been through hard losses, some of which we've gone through together, and we understand each other. I don't have to tell her how I'm feeling, she just knows. We both know what each other needs to brighten up the day and know that we are there for one another unconditionally. I don't have to tell her that the reason I am feeling edgy or moody or sad is because I am mourning my mom; she just knows. I know it sounds really corny, but if ever there were such a thing as friend soul-mates, we would be it! She loves me, flaws and all! And I feel the same about her. I am so blessed to have her in my life.

Coming home from Arizona was hard. Don't get me wrong-I was happy to be with my husband again, I missed him while we were gone. But now I miss my bff. In a perfect world, we'd be neighbors and we would see each other everyday. Now that I'm home, it's back to reality. I feel like I'm back to where I was before she came; alone in managing these complicated emotions of caring for my mom. :(

A Little R&R

My brother is on his way into town. My dad is taking a much needed vacation with his sisters and cousin and will be gone for a week. My brother and his family are coming to stay and help out with Mom while he's gone.

Over the past couple of days, in preparation of his arrival, I was reflecting on how much Mom has changed in just 3 months, since Joe last saw her.

The most obvious change is that Mom is now in diapers full time; Joe knows about that. I've related the shower struggles and the ever-increasing loss of words and language.

But then there are the changes that we don't talk about daily. These are the changes that happen so gradually that it's hard to remember precisely when it started.

Mom no longer changes into pajamas at night. In fact, she no longer changes at all. She used to change her clothes if she didn't like my wardrobe selection for her; not anymore. She stays in the same clothes until someone changes her and requires full assistance to get them off and on.

Mom only has 3 names left in her vocabulary: Bud, Cassandra and Ellen. I don't know if she remembers who my sister is or any of the grandkids (I think she knows that they belong to me). But the only names and the only people she ever asks for is my dad, my aunt and myself. I think it's a little strange that she still remembers Ellen but not Claudia (her other sister). Claudia comes over weekly to sit with her; Ellen has been over twice over the past 4 years. I assume it has to do with her obsession to walk to Ellen's house. It is the one ritual that she has left and holds onto.

Mom doesn't put any make-up on anymore, not even blue eyebrows. She tries sometimes, but it's hard to put on lipstick when the lid is still on the tube. Every once in a while she might get a bottle/container open and she'll end up with eyeshadow or lipstick smeared across her whole face. Toothpaste seems to be her favorite choice of moisturizer.

I am with Mom nearly everyday, so the changes aren't as obvious to me. I wonder what it must be like to come and see her after being away for a few months. I am nervous for what lies ahead this week; worried if my brother can handle it all. But also, I'm so relieved that they will be here to help with Mom and to share responsibility with me. At least I know that we are all in this together!

Here's hoping that my dad has a restful, stress-free, fun week away! He sure deserves it! If you're reading this, Dad, don't worry-we've got this! Also, put away your phone and go have fun! ;)

All Good Things

They say that all good things must come to an end. This week we officially "put an end" to our church volunteers.

For the past 3 years, wonderful ladies from our church have been volunteering their time to come over and sit with mom. When mom and dad's ward saw the need, they filled it. Every Sunday, the "compassionate service leader" passed around a sign up sheet in the women's auxiliary (called the "Relief Society") and women from church signed up for two 4 hour shifts throughout the week. Additionally, if we were ever in a jam, we knew we could count on them to help us out. This was such a huge relief for us, especially in the beginning when were first discovering that Mom needed some extra supervision to keep her safe at home. It was a huge relief and stress off my back (as the caregiver coordinator) to know that there were those two periods of time that I never had to worry about. I knew that they would always pull through for us.

About 6 months ago, our wards changed and Mom and Dad were merged into my ward (our church operates in boundaries, much like a school district system). This meant a new coordinator in Relief Society and a different group of women. While the ladies in the other ward had come to love Mom and looked forward to their service with her, this new group wasn't as familiar with our routine and need, so it's been more of a struggle to get people to sign up (or show up when they do sign up). I don't fault or blame anyone, it is what it is and it may be a lot to ask people to sign up for. Dad and I have been discussing the phasing out of volunteers and knew that it wouldn't last forever.

As expected with this disease, Mom is advancing in progression. In some ways it is easier (she spends a lot of time in bed) but in some ways it is much harder, especially now that she is diapers full time. We've been very fortunate to have no issues on our volunteers' watch, but I know that we have just been biding our time. It will inevitably happen that Mom has a big mess while a volunteer is with her, and I wouldn't expect them to have to clean up that mess.

Taking all of these factors into account, we have officially called off our church volunteers. It is bittersweet. I have come to love many of these women who have so selflessly and compassionately loved and served my family. I know that many of them have come to love and care for my mom as well (and they are certainly welcome to come visit!) On behalf of my family, I want to give our sincere gratitude and thanks to all of the women over the past few years who have stepped up and helped to ease our burden. We could not have done this without you! We love you and will forever remember the great service you gave to us in our time of need. I don't know that I can ever repay each individual back, but I hope to repay it back by giving others service in their time of need. Love, service and compassion is what makes the world go round!

Crazy Town

Dementia makes you crazy.

I'm not talking about the person diagnosed with the disease; I'm talking about the caregiver. I'm talking about myself. If there's a sane caregiver out there, I'd like to meet them. Or maybe not, because then I'd feel even worse.

Lately I feel like my emotions are all over the place. Sometimes I feel strong, resolute. I am proactive with my work in the foundation, which gives me a focus and a purpose. I am patient with my mom and I get the job done without breaking. I try to focus on all of the good things I have going on in my life, things that bring me joy: my beautiful kids, my incredible husband, my amazing and supportive friends, my home-based sewing business (which doubles as my therapy time!).

But mostly, I just put on a brave face as I face the day, going to play dates, escorting the kids to their sporting events, attending church groups. I wear a smile on my face but inside, my heart is ripping into two. The truth is, my mom is always on my mind. Always. The sadness always lingers with me, like a black cloud. I worry and think about her when I'm away and miss her when I'm with her.

It's a complicated thing-to grieve for someone who is still living. I don't think there's any way to describe it to a person who has never experienced it. You grieve for the loss of the person that was once there, while still holding on to the physical being that remains. The grief is relentless and suffocating at times. I feel on edge; any unpleasant thing can bring me to tears. I am a ticking time bomb; one wrong move can set me off.

It's a continual rollercoaster of emotions; one day I'm up, the next I'm down.

Over the weekend, we received some unpleasant news that kind of sent me into a downward spiral. It would have been upsetting even if my life weren't plagued by dementia, but that dark, hovering raincloud (called dementia) met with this other passing, dark cloud and together they brewed a nasty storm. I stewed about this particular situation for days and I was left feeling, hurt, sad, and angry. Very angry. I'm not even saying my anger is justified, but when you're already slightly unbalanced it's as if the senses are heightened and what might start out as disappointment or sadness can easily fester into some other (stronger) emotion. For me, it was a lot of anger. Anger at the situation but probably mostly triggered by this disease. I'm angry that dementia has made me such a basket case. I'm angry for the strain it has put on some of my relationships, and at the people who I feel have let me down over the years. And most of all I am ANGRY that this disease struck my mom. I am angry for her, that she has been robbed of what is supposed to be the best years of her life. I am angry that my dad is losing the love of his life, for the pain and the helplessness he feels at watching her slowly fade away each and every day; for the helplessness I feel for not being able to fix it and make it better. I am angry that I've lost my mother, who was so much more than my mom; she was also my friend, my confidant and therapist, the one person that I could talk to without fear of judgment, who could give me advice or help me navigate my way through a problem, the one person who loved me and thought the world of me. I am angry that my children have lost their grandma and will never experience what I had growing up: the grandma to spend the night with, to bake cookies with, to have at every one of their music recitals or sports events or any important life event, to be their biggest cheerleader and to be their refuge from their "mean" parents. This is the kind of grandma I had and this is the kind of grandma that my mom wanted to be. And I'm ANGRY that was all taken away from us.

I don't usually post negativity on my blog; I like to keep it away and I don't want to sound like a whiny, sniveling baby. I'm not the first person to lose their mom at a young age and I'm certainly not the last. At the same time, I think it's only fair to my readers to be real. Somebody out there might be reading this while riding their own rollercoaster of emotions and I think it's important for them to know that they aren't alone in this. Because so often with this disease, we feel alone. I feel alone. You aren't crazy. Or maybe you are. But if you are, I'm right there with you!

Diaper Rash

Incontinence. I hate that word.

I've known from the beginning that incontinence is part of the disease. But four years ago, it was hard to imagine that it could actually happen to my mom. I thought maybe it would skip her, or only happen in the very last weeks of her life. In fact, I prayed that when the incontinent phase did hit full swing that the end would come quick. Nobody should have to suffer like that. My dad was optimistic that maybe this phase would pass over her altogether.

Mom's incontinence started in October, but it was sporadic. She might go a few weeks without a single accident and then have accidents two or three days in a row. It's easy to say to put a diaper on her, but much harder to do. Over the past couple of months, there have been a few times that we have had to put diapers on her because on that given day she was continually wetting herself. Once she was dry for a day or two, dad would put her back in regular underwear to preserve whatever amount of dignity was left, for as long as possible.

Unfortunately, over the past two week, the incontinence has been an everyday occurrence which has resulted in Mom's use of diapers on a daily basis. It breaks my heart, yet I've known it was coming. I've expected it. I think up until a couple of weeks ago, my dad was still hoping we could bypass the constant use of diapers. Putting the diapers on mom has eliminated a lot of mess and stress of cleaning up some pretty messy accidents, but there are downsides to diapers, aside from the obvious (losing one's dignity). Today, when I bathed mom, I discovered red bumps on her bottom. I couldn't but let out a little cry when I saw them.

"Oh mom, you poor thing," I said, as she stepped into the shower.

My maternal instincts set in and I felt pained and saddened when I saw her bottom. Poor dear must be miserable! Even though we try to stay on top of things and change her when she's wet, she's still developed a rash. I didn't have any desitin on hand to treat it (I'll be making a run to the pharmacy here in a bit!), but my dad did have cornstarch in his cupboard. Linda, our caregiver, suggested we try it and I remembered how I used to use cornstarch for my babies whenever they had a bad diaper rash. After I cleaned her up, I put some cornstarch in the diaper. Tonight my dad will try desitin (or whatever the pharmacist might recommend!!) Hopefully with persistent changing and cleansing, it'll clear up quickly.

But, I'm sure this is just the beginning. I've read the horror stories of others who have been there already: diaper rashes, bed sores, frequent UTI's...I suppose it's just the next step in the disease. But it sucks all the same :/

The Shower Struggles

Since last fall, I have been going over to Mom's house 3 times a week to help her through the shower. This was a result of her going days without showering. My dad, of course, would help her get in a couple times a week, but at that time Mom was still on somewhat of a schedule; or, at least, she knew day from night. This presented a challenge because if Dad showered her when he got home from work at night, Mom became confused. Showers signaled morning time for her. Bathing her in the morning was difficult for Dad for a couple reasons: 1. Mom was often still asleep when he left and 2. It made him run late out the door. In trying to lift my dad's load, I volunteered to go over a few times a week to help her get through the shower.

In the beginning it was pretty simple. I would help her get undressed because she wouldn't voluntarily take off her clothes to hop in. Once in the shower, she was able to go wash her hair and her body on her own. Nevermind that she used 1/4 of the bottle of shampoo, conditioner and soap each time; she was getting the job done.

Over the course of the past 9 or 10 months, Mom's abilities to shower herself have decreased. At first it was just cutting out the conditioner, then forgetting to wet her hair before she poured the shampoo on top. All of these changes have forced me to get a little more involved with the showering process. My dad put on a detachable shower head to make the job a little easier.

Our latest routine is this:

I arrive at Mom's house after I drop the kids off to school. I get all of her clothes ready and laid out on her vanity where she can see them. She gets very anxious if she doesn't see clothes laid out for her. I change out all of her towels and washcloths in the bathroom. The towels have become an issue...for some reason Mom uses them to wipe herself now. It's gotten to the point where (just this week) we bought her separate washcloths to leave in there for the sole purpose of her wiping and we take all of her shower towels out now after we are finished with showering. I get her blow dryer ready and make sure everything is set to go; once she's in the shower, I can't leave her (I used to prep everything while she was in the shower). Only once everything is ready to go do I begin the strip down. I remove her mismatched earrings and adjustable "wedding" ring from her finger. She isn't too happy about that, especially because I think she knows what is to come once the jewelry comes off. I remove her shoes and socks, then the rest of her clothing, with no help from her. It's like removing clothing from a struggling toddler, only she is bigger than me. She will sometimes try to grab the clothes back from me or out of the hamper, so I have to be assertive and redirect her. We are fortunate that she doesn't get aggressive with us (aggression is common in many forms of dementia). I have to gently push her into the bathroom, where I turn on the shower head and she shakes her head at me, "no, no."

Once I get her in the shower, she kind of stands around, not sure what to do. The bathroom is very small; there is just enough room for the shower stall and the toilet. There isn't much room to maneuver around in so I've had to be creative in getting the job done. I usually step onto the toilet and lean over the top of the shower, removing the shower head to wet down her head. Usually she will grab the empty bottle of shampoo that sits on the shelf and then I take the full shampoo bottle, which sits on the back of the toilet, and pour it into her hands. She will slap it onto her head and put her hand out for more, so I put the conditioner in her hands. She doesn't make any efforts to rub it in anymore, so I lean over while she reaches for her loofah sponge and I quickly scrub her head. She holds her sponge out for me to put soap on, which bottle also sits on the back of the toilet (we moved it all outside the shower because of the incredible amount of soaps she was using). She used to wash her whole body herself, but now she runs it quickly across her chest and then hangs the sponge back up and turns off the water, without rinsing. This is where it gets tricky. I stand overhead with the shower head, trying to rinse her hair quickly, but once that water gets shut off she is ready to get out of the shower. This leads me to opening the right side of the shower door, turning on the water again, while Mom grabs the squeegee to wipe off the shower doors. It fascinates me that with everything she's forgotten, she still attempts to wipe down the glass doors with the squeegee! While she is distracted with that, I grab her loofah sponge and quickly try to wash all of her body parts, and yes, I mean all of them. This can be a bit uncomfortable for me, but I'm learning to deal with it. Sometimes she is done before I can wash all parts, so I have to physically get in there and put my foot against the door so that she doesn't open it. Last Friday, I forgot that important step in the process (putting my foot to block the door) and in an attempt to jet out of the shower, Mom opened the left side shower door and slammed it into my head. It hurt like heck and left a pretty good goose egg just above my eyebrow! You can kind of see it in the picture, it's kind of hard because I do have make-up on, but if you look closely you can see it (I was going to an 80's dance with my son, so don't mind the gobs of make-up and 80's accessories, ha ha).

It's a struggle to get her washing and rinsing completed, but I usually win, though I'm usually wet by the time this whole process is over. I've learned to take off my shoes and socks and usually come over in my work out clothes now.

Mom then grabs the towel and begins drying off. She used to be very thorough at drying herself, getting every nook and cranny. Now, she leaves herself very wet so I take the towel and help her to dry off her body and squeeze the excess water from her hair. Just as I used to do with my children when they were toddlers, I help my mom get dressed. I prep her underwear and bring it down to her feet where she can step into them, holding onto the wall. Then I put on her undershirt as she lifts her arms over her head and dives her head in the hole of the neckline that I have stretched open for her. Next comes her pants and then her shirt. It has to be in this order or she gets confused. If I hold up the shirt before the pants then she will think she needs to step into them, so I try to keep it in the same order. Up until a couple of months ago, Mom was putting on her own shoes and socks, but that has become increasingly difficult for her. Now, she holds her foot out for me, only raising it a couple of inches and holding her balance on the wall or vanity, while I scrunch up her socks and place them on her feet, stretching them past her heel and up her ankle.

It's becoming a bit trickier to get the job done, but between my dad and me, we seem to get the job done and come up with creative ways to make it happen. We've contemplated putting her in the bathtub rather than the shower, but I think that would be harder because she doesn't know the bathtub, she knows the shower. Since she doesn't really know day from night anymore (she is up in the middle of the night almost regularly), I think it might be easier for my dad to just hop in there with her at night and shower her; not that I'm trying to get out of helping...I'm happy to help. I'm just brainstorming the most effective to handle the situation. It is working for right now...but it gets more and more difficult with each passing week.

Mother's Week

Probably the hardest week of the whole year is [what I call] Mother’s Week. Mom’s birthday always falls in the same week as Mother’s Day-sometimes even on the same day. In fact, two years ago, her birthday fell on Mother’s Day. It was the last birthday she remembered, as I had predicted in my post.

Last year, she had no clue what Mother’s Day, OR her birthday, were. We were hopeful that something might spark her memory, but without any luck.

This year, we knew well enough that she would have no clue about any of it. She doesn’t know what day of the week it is, let alone the month or day or anything significant. She has lost concept of time, oftentimes doesn’t know the difference between day and night, and one day just runs into the next for her.

The week leading up to Mother’s Week was a little emotional, as I prepared for another year without my mom. But I didn’t want to spoil the day by feeling sorry for myself, so I prepared myself mentally and made plans to spend time with my mom, despite her lack of comprehension. I still feel the need to DO something for my mom on special occassions, but what can you do for someone who doesn’t understand and appreciate the significance of the day, or have any interest in anything?

The best thing I can do for my mom is to care for her. So I decided to sell my toffee again to raise money for her caregiving fund. I kind of put it out there last minute, but I sold about 40 pounds! Thanks to my sister and my sister-in-law, Amber, for donating some of their time to help me get this done. I tend to bite off more than I can chew ;) Doing this helped me to feel like, despite mom’s lack of understanding, I was still able to give something to her to honor her special days.

On Mother’s Day, I enjoyed a short visit with mom, at her house. I took her to do the one thing she still seems to enjoy: take a walk to her sister’s house. She only stays for 2-3 minute visits now, but that 2 minutes makes her day. Twice, as we were walking, I could make out the words “Thank you thank you” as we made our way to her sister’s. Simple as it is, it’s the best I could think of to do for her.

On her birthday, we celebrated (without her) at her favorite restaurant once again: Miguel’s Jr. We did it as our 2nd annual foundation fundraiser in honor of my mom. I’m not sure yet how we did (financially), but there were quite a few familiar faces in the dining room and people I didn’t even recognize who walked in with fliers. Word is getting out; people are hearing about the foundation and supporting our cause while friends continue to come and celebrate my mom and support us in our journey. This support means the world to me. I know it means a lot to my dad, as well.

Mother’s Week was emotional; I think it always will be. I’ve learned that it’s okay to let a few tears slide. Though there was sadness in missing my mom, there was also a beauty in celebrating her and serving her. I am continued to be touched by the friendship and the love of friends and family that surround me. For that, I feel truly blessed.

I don’t know what next year holds for us, but for this year, she was still here physically and I was able to hold her and kiss her and tell her I love her; I am grateful for that.

Rollercoaster Ride

Dementia is such an emotional roller coaster. Lately, I feel like I've been holding everything inside. I'm not a big crier...I'm sensitive and emotional at times but I don't like crying, especially in front of people. So what do I do? I hold it all in until I end up having an emotional break down.

The past couple of months have been extremely difficult for me-with having to put my mom in a diaper and watching her decline more and more (that's just the tip of the iceberg). It's emotionally exhausting. I try to be strong: for my family and for myself. I tell myself that I can handle this and that I'm not going to let this disease break me. There are days that I do feel very strong and kept together. But then there are other days where it is just too much. The past couple months have had many days like that and it's been building and building inside my dam of emotions.

On top of the stress and heartache of my mom, I still have a life outside of caring for her. It's a balancing act to try and be everything for everyone. I try to take some of the burden off my dad by caring for my mom on my assigned days, and filling in when others can't make it, and I take care of the caregiving schedule. That seems easy enough but it can also be a headache at times. It seems like for the past two months, there are at least a couple shifts per week that are uncovered, so I'm scrambling to find someone to cover or I end up doing it myself.

Sports season is in full swing now as well. We've had baseball and acro (tumbling), swim team, GATE club (an after school program for gifted and talented education), church activity days and then my daughter wanted to do a song/dance with a group of friends for the school talent show. It ended up being a little more involved that I thought it would be, so for the past 2 1/2 months we've spent 1-2 hours every Wednesday after school teaching the girls the song and choreography for that dance. If sister is in the talent show, then brother wants to be in too so we've also been working on an act once a week with my son and his two friends. Needless to say, my plate has been full! I'm no different than any other mom; we all have a lot on our plates. But with all factors involved, I've been left feeling drained by the end of the day, physically and mentally.

Last week was the talent show (now I can mark one thing off my list) and I almost made it through seamlessly. Almost. Unfortunately, there were a couple of kinks to work out at last minute which resulted in a lot of stress the day before the show. Luckily everything worked out, but in the moment it was a little bit more than I could take and I kind of took the brunt of it for both groups. Some things were said that hurt my feelings but I know that I'm also extra sensitive right now because everything has been building. By Thursday night, the dam had broken and I locked myself in my bedroom, laid on my floor for an hour and half, un-functional, as the tears poured out, unstoppable. I felt stupid for a lot of things, including my reaction to the stress, but I guess it was inevitable with everything I'd been holding in. I cried for everything that had transpired those past couple of days but that was really just the icing on the cake. I knew many of my tears were those that I was holding back for my mom.

Today is the start of a new week. I'm ready to wipe away the tears and move forward. But I need to learn that crying is okay. I've lost a lot; I don't say that to pity myself, but rather to reassure myself to be patient with myself and know that I don't have to hold it all in all the time. Many people don't know what it's like to lose someone who is still living. I'm not perfect and I never will be. But I am doing my best!

And now, for your viewing pleasure, and to make this post a little more happy, I'm sharing my kids' videos from the talent show.

My son did a glow-in-the-dark dance with his two best friends. He is the one in the green, to the far right. Click here to see his video.

My daughter performed a song and dance to Annie's "Hard Knock Life" with 7 other friends. She is the one who starts out holding the sheet, on the left, and she does the solo part mocking Ms. Hannigan. You can view her video here.

I'm proud of my kids and for their hard work!

Milestones

While raising my children, there have been certain milestones that I've waited for them to reach as they've grown. The earliest milestones that I can remember include sitting up on their own, first words, crawling, walking, eating solid foods. As they've grown, they've learned so much within those first few years of life: developing fine and gross motor skills, learning how to socialize with their peers, how to tie their shoes, and perhaps one of my favorites: how to go potty on their own. The list of accomplishments goes on and on. With each milestone, I feel a sense a pride at the tasks my child has accomplished and I marvel in the wonder of them learning and developing into little people.

With dementia, these same sorts of "milestones" exist, only they are not so pleasing and exciting. Rather, they are quite the opposite. Each "milestone" brings us closer and closer to the end. Let me break down the "milestones" I am referring to.

I learned early on in the disease what we would be dealing with as mom's disease progressed. It was hard to share this information with my family and I think there was even a bit of denial that it would really come down to this, and so I shouldered the burden of knowledge and waited for these things to come to pass. I've said before that dementia is, in a sense, like growing backwards. While children grow and learn new things with each year of life, my mom forgets these things with each year (or even more rapidly than that). Dementia takes you from being an independent, intelligent adult to eventually becoming like a child again, fully dependent and not knowing how to care for oneself any longer. I think of it in phases: the childhood phase, then the preschool phase, then down to toddler and finally infancy. With each of these phases, mom seems to be on the developmental level of each of these age brackets as she forgets what she knew just months before.

First, she was losing her social inhibition (this tends to be one of the later skills that children master). Slowly, she has been losing the ability of doing her hair and make up until finally, it looks as if a toddler has gotten into mother's make up box and smeared color all over her face. She's gone from dressing herself to being super obsessive about matching (not being able to distinguish between matching and coordinating), dressing herself with clothes inside out and backwards to now needing assistance at times to get her clothes on and off. Her fine motor skills have gone by the wayside; it started with misspelling, partial sentences and sloppy writing. I haven't seen her read or write in close to a couple years now. Her speech is very minimal; most words are gibberish and difficult to understand; comprehension is gone.

The later phases of the disease look a lot like infancy. A person affected by dementia will eventually start losing balance and the ability to walk. Chewing and swallowing become difficult and choking becomes a real concern. As a result, many people end up with a liquid diet or pureed foods, much like baby food. Incontinence sets in which results, most often, in adult diapers. Speech regresses until there are no words left to speak. They spend a lot of time sleeping, much like a newborn Indeed, it is like caring for a newborn child in an adult's body until finally, their body completely shuts down.

As you can imagine, it's been difficult to come to terms with all of this and I know my dad has remained the forever optimist, thinking maybe she won't get to those phases. If she is spared from going through the complete course of the disease, it would only be because grace steps in and takes her from something else instead (a heart attack, stroke, etc).

I can't tell you how long my mom has left. That question goes through our brains everyday. I try to make the most of the time I do have with her because truly, we don't know how long until the disease rips away the rest of what is left. And truthfully, I pray that when/if it gets to the point where she is completely bedridden, that it goes faster rather than slower. At any rate, what I can tell you right now is my observations of what has been happening as of late.

For a while now, it seems like mom simply inhales her sandwiches and doesn't take the time to chew. The other day I stopped to observe her while she ate her sandwich and I've noticed that she isn't really biting down when she chews. She moves her jaw but what she does resembles more of "gumming" her food, like you'd see in a toddler. I guess in this way it's somewhat of a blessing that all she'll eat is pb&j sandwiches because at least it's a soft food and harder to choke on than say, a steak. Even still, she eats quickly, swallowing large bits of sandwich that aren't chewed (this evidence was found in her vomit a few weeks ago) which results in coughing while she eats. She often ends up with big hiccups by the end of her meal. We won't talk about the mess that is made while she eats; if you've had a toddler, you can imagine.

We've also noticed several occasions where she has ensure spilled all down the front of her shirt. She seems to be having problems drinking out of the bottle. She will not drink out of cups; I'm not sure how that would go over if we tried. She only drinks out of water bottles and ensure bottles and like I said, it's getting harder for her to make it all in her mouth.

We've been lucky that she's had no falls. But I can tell that her balance and coordination is worsening. When I help her to get her legs into her pants, she has to hold onto the wall of the bathroom to steady herself and prevent from falling over. She can't raise her legs very high, so I bunch up the legs of the pants and bring them as far down to meet her foot as possible. She has been struggling to get her socks on as well. I usually bunch them up and help her get them on over her heel. If I don't do this, she oftentimes can't get the sock on over her heel and she ends up with the sock hanging halfway off her foot and bunching up inside her shoe.

And one of the hardest things of all: incontinence. This has been hard to talk about because it's like stripping away the last of her pride. Of course, we know it's not her fault; it is the disease. Nevertheless, it breaks my heart that she is struggling with getting to the bathroom in time; most times she doesn't seem to even notice that she's had an accident. This issue began six months ago and has been progressing since then. In times where she isn't feeling good (if she has a cold or something) it gets worse during that time period. In fact, a couple of weeks ago, mom had a rough week. The worst of it was on a Monday, when I was sitting with her. She had a little bit of a cough and she had had several accidents between that Friday before and the Monday that I was there. By Monday afternoon, she'd had an accident within an hour of her last accident and I was down to one dry pair of pants for her. I knew what I should do, but it was really difficult in doing it. My dad hasn't wanted to put my mom in diapers. He wants her to be as independent as possible and I think there's a fear that once we put her in them, she'll become dependent and not use the toilet anymore. I was really worried that he would be upset with my decision, but not knowing what else to do, I changed my mom into an adult diaper (I had brought over a pack months ago, just in case). I can't describe to you how difficult it was for me to put that on her or to step back and look at my mom wearing it; she was resembling a grown toddler in every sense now. My heart broke for her, but it was necessary.

Fortunately, the accidents lessened up by the end of that week so we went back to underwear and incontinence pads, but it is a battle that I'm afraid is not going away. Additionally, we have struggled with her flushing things down the toilet (washcloths, pads, etc) and using towels in place of toilet paper...that is her new norm. It's unpleasant and smelly but at least she is using something. I've heard horror stories from other people.

I fear that it's truly the beginning of the end. What I have described is typically what you see in the later phases of the disease, though there's no real guess as to how long the later phases can go on. I think (from what I've read and heard from others' experiences) this phase can last a few years. I speculate that we may have a couple years left at most. But...she could surprise us all.

Where The Light Gets In

It's been exactly 4 years, 1 month and 1 week since mom's diagnosis of semantic dementia. I still remember it like it was yesterday. I had been anxiously waiting all day to talk to dad about how mom's visit at UCLA went. When I called him for a report that evening, he responded that he'd rather not talk about it over the phone and suggested that I come over a little later to talk. My stomach was in knots, a mixture of anxiousness and hesitation to hear the results, but also hope that they had figured out what was going on with mom-and were able to help her get better. I helped my husband tuck the kids in bed and raced over my dad's house. Though we suspected (due to our research on her symptoms) that there was something affecting the frontotemporal region of her brain, nothing could have prepared me for the news I was about to hear.

I remember walking in the front door and meeting my dad in the kitchen where he sat at the table. He got up and busied himself with a few things while I stood nervously nearby, waiting for him to spit it out.

"So?" I asked. "What did they say?"

The image of my dad revealing the news will forever be seared into my memory.

"Well," he started, picking up a pamphlet from the table beside him. "There's good news and there's bad news," he said, looking down at the pamphlet. "The good news is that they are pretty sure they figured out what is wrong with her. The bad news is that they say she has a brain disease called semantic dementia. And, it's not going to get any better."

His eyes wouldn't meet mine when he said it. He looked down at the floor, tears welling in his eyes as he fought the downward frown of his mouth in an effort to keep a brave front. He dabbed at the corner of his and then finally brought his eyes to meet mine; I stared back at him speechless.

Semantic dementia. Dementia. The words played over and over in my mind. What does that mean? I didn't understand. It couldn't have been dementia. It was damage as a result of her surgery, and it was supposed to get better.

Dad handed me the pamphlet and recounted their day at UCLA: the tests, the questions, the explanations from the doctor, the plan for the next steps. I felt confused and was left with many questions. I went home that night and over the next several weeks I scoured the internet for any information on FTD, specifically semantic dementia. Every medical article I read left me feeling more and more helpless, afraid and full of even more questions. Additionally, I wasn't ready yet to tell my dad everything I was learning-and he wasn't ready to hear it- because the outlook was bleak. Words and phrases such as "incontinence" and "difficulty swallowing" and "inability to speak" continually appeared over and over in my searches. I remember feeling so overwhelmed and wanting someone to talk to-someone who had been through this themselves. That search, however, was much more difficult. Aside from a yahoo support group about PPA (a variant of FTD that closely resembles SD), my search came up empty. There were plenty of people talking about Alzheimer's, but I couldn't find anyone writing or opening up about FTD.

In my state of loneliness, I decided it might be therapeutic for me to write down what was happening and how I was feeling. It was an outlet for me and also a way to track mom's progression. I wrote it in the form of a blog (this blog) but had it set to private; it was only for my eyes. A short time later, however, I mentioned to my sister about my writings and I sent her an invitation to read my private blog. She was relieved to see it written out in a way that people could easily understand what was going on with mom and she asked my permission to share it with a few of her friends. At that point, few people knew of my mom's diagnosis and it was really difficult to articulate and explain to people what that meant. Along with that, several friends and family members were put off by mom's odd behavior. After talking with my sister, I decided to send my blog along to family members to read so they could gain an understanding and empathy for what mom was going through (note: by the time mom had received a diagnosis, she did not understand what the word dementia meant).

My family thanked me for opening up and sharing and were sympathetic to what was happening. Furthermore, they were able to see my mom in a different light; rather than being put off by her oddities, they began to understand that her behavior was beyond her control and they made more efforts to be kind and understanding.

Shortly after that, my sister sent my blog to a good friend of hers, and this friend messaged me and said,

"You have a true talent for writing. Have you considered opening up this blog for others to read? You could probably help a lot of other people."

The thought hadn't crossed my mind; I didn't want to do anything to further my dad's pain or make him uncomfortable. Yet, I couldn't forget the feeling of isolation and loneliness I felt those months after mom's diagnosis; a feeling that nobody around me understood the heartache I was going through. I thought on the idea for a couple of weeks before mustering up enough courage to talk to my dad. With his blessing, I opened up my blog to share with other people. Over the [nearly] past 4 years, I have had many people email and reach out to me to thank me for writing while sharing their own experiences of their mom/dad/brother/grandma/etc with FTD. It has been such a blessing to me to connect with all of these people. There are moments I have doubted myself for writing, but every time I receive a new message of gratitude from someone else across the globe who is struggling like me, I know I am doing the right thing. By sharing their stories with me, it helps me to know that I am not alone in this either. There are other people out there who understand exactly the heartache my family is experiencing.

That was a bit of a long introduction to what this post is really about. But the past few days have brought up a lot of past memories and recollections and I feel it's an important background for what I'm going to write about next.

Several months ago, a friend sent me a link to an interview in Redbook magazine with Kimberly Williams-Paisley (who you all know as the adorable bride on the screen hit "Father of the Bride"...one of my and my dad's favorite movies!!) It was a heartwrenching interview, actually written a few years ago, about Kimberly's mother's disease: FTD (specifically, primary progressive aphasia, which is the sister disease to my mom's semantic dementia). As I read her interview, I felt a connection to this person, who I had never met. I could relate to so much of what she said and at times I felt like I was reading something that I had written myself! It was an indescribable feeling to know that I wasn't alone in what I was dealing with and the personal battles I was facing. I thought to myself, finally! Someone who know exactly what I am going through and that could relate to me! (nevermind that she's a celebrity who I'll never meet, ha ha).

After a little more research, I learned that she was a writing a book-a memoir about her family's journey with this disease. I haven't admitted this on my blog before...but I actually started writing my own memoir of our family's journey a couple of years ago, using excerpts of my blog, after the promptings and encouragement of several readers and family members (it's a long work in progress). I couldn't wait to read her book. As soon as I learned of the release date and preorders were made available, I ordered a copy of her book, entitled: "Where The Light Gets In." The day the book was released, it arrived on my doorstep.

I have spent the past few days engrossed in this book; every quiet moment I could sneak in, I buried my nose in her words. There were parts where I literally laughed out loud and exclaimed to my husband "Jeff, this is just like mom!" And other parts where I had to hold back the tears (I couldn't have any other parents at swim practice see tears sliding down my cheeks!). I could relate to all of the emotions she wrote about in her journey: the fear, the anger, the denial, the acceptance of her mom (in fact, one section of the book reminded me of the blog post I wrote for another site, about learning to love my mom again). I could especially relate to Kimberly's sister, Ashley, who like me, bore the burden of knowledge from reading and educating herself on what was to come, while other family members weren't quite ready to hear it. I believe Ashley and I were even on the same yahoo ppa support group!

I appreciate that Kimberly put it all out there; she didn't hold back. I know from experience how vulnerable you become when you open up and share with the world, especially not knowing how people will receive it. But I appreciate that she did this. Her words have helped me and I know they have/will help so many others who are going through this. (And, she's inspired me to start writing again!)

I wish this book would have been available the minute I learned of my mom's disease. It would've been such a comfort to me in those lonely times to know that I was, in fact, not alone in what I was facing. I am sharing and recommending this book to all of my readers: whether you are just starting out in your journey, whether you find yourselves in the later stages, or even if you are a reader not stricken by this tragedy known as dementia, Kimberly's book was an uplifting book and sent an inspiring message of family and unconditional love.

So, if you haven't gotten your copy yet, go buy it. In fact, go buy it on Amazon. And when you do, please take 20 seconds to register yourself on Amazon Smile as your gateway to enter Amazon shopping (bookmark it!) You can select The DEANA Foundation as your favorite charity and every time you shop, the foundation will receive a small portion of what you spend. It is such an easy and practically effortless way that you can help the foundation, in turn helping families affected by dementia.