Monday, March 20, 2017

Memory Masquerade

I've always tried to be very open with our journey on this blog, sharing every part of it; the good, the bad, the ugly. The other day I realized that I have been holding back a big part of my journey with dementia. Why am I doing this? I don't really know, but I suppose a big part of it is fear; mostly fear of what people think.

I have mentioned The DEANA Foundation on here before, but I don't mention it often. I think a big part of that is because I don't want to come off as though I'm trying to advertise or "sell" something to my readers; that isn't my intent with this blog. With that said, the foundation has become a huge part of my life and a big chunk of this journey and I feel that I'm not being authentic by holding back and not talking about it. The truth is, I spend a portion of nearly everyday contributing something to the foundation, whether it's phone calling, making presentations around the community, working out details on events, etc. Some days, I feel like I am crazy to have started all of this while in the midst of caring for my mother and my young family. There are moments when I question myself if this is what I should be doing and focusing on. There are moments when I feel very inadequate, like I am a tiny fish in a giant pond. There are moments when I want to throw in the towel and quit (not gonna lie). Yet, there are other moments when I feel like I was definitely meant to carry out this work, especially when we are able to award grants to help families that have nowhere else to go. It gives me a positive direction to channel my emotions and it is a way of honoring my mom. While at these events, I'm able to talk about her, talk about what we've been through while trying to make a change within a broken system. I feel that in some small way I am making (or attempting to make) lemonade out of the lemons we've been given. That is becoming my new mantra for life: making lemonade out of lemons!

For those who aren't up to speed on The DEANA Foundation, you can visit our website to learn more, but basically our goal is to raise money to help middle-class families (since they are the ones always left behind) with caregiving costs associated with dementia. We do this through donations, fundraising and hosting events.To date, we have been able to help 3 families in our community with our grant program. We have done so much over the past couple of years and have many great things in the works right now, so I'm optimistic that number will continue to increase each year.

Right now, we are planning our first annual Gala fundraiser, which we've given the theme of "Memory Masquerade". The goal is to raise money for the foundation, which we award as grants to families who need help. This will be our biggest event so far and is going to be a beautiful evening; our guests will get dressed up and enjoy a nice, catered dinner. We will have a photographer there taking photos and we are having a silent auction, which we've gotten some amazing items donated for (including a helicopter ride, an autographed copy of Kimberly Williams-Paisley's book as well as an autographed copy of "Still Alice", lunch with the Mayor, themed gift baskets...just to name a few of many fabulous things we are auctioning off...and the donations are still rolling in!). We'll have some entertainers throughout dinner and a guest speaker is coming from The Alzheimer's Association. We are also planning a very special tribute for those affected by dementia. I don't want to spoil the surprise of everything we are doing, but we are making some lovely, meaningful keepsakes for caregivers to take home and will also have a special presentation dedicated to all of those affected. Given the fact that this foundation wouldn't exist were it not for my mom, we are paying her a special tribute as well, which gives meaning to me and my family on all that we are doing. I'm really excited about the evening but if I'm being honest it has brought a bit of anxiety as well. For one thing, it's been a lot of work and at times it is overwhelming. It consumes my thoughts and I'm constantly second guessing myself. For another, I'm so afraid of failing. With all of the hours that I and my volunteers have put into this so far, and all of the emotion and energy and focus we have given- I don't want it all to be in vain. Nevertheless, I am optimistic that the evening will be a success and that this work will move forward! When I sit back and look at what we've been able to accomplish this far, I am proud of our work and feel motivated to keep pushing along, hard as it may sometimes be.

Even though I don't speak of it often on this blog, know that the foundation is still plugging along! It grows stronger with each passing year and I feel like we are finally gaining momentum and heading in the right direction.

To view our gala information, you can view our website or click here for our Facebook event page.

Tuesday, March 7, 2017

Five Years

Today marks exactly 5 years since my dad took mom to UCLA and received the dreaded diagnosis: semantic dementia. I remember it like it was yesterday; the tears in my dad's eyes as he delivered the news that night while standing in his kitchen. The struggle to understand and come to terms with what the diagnosis meant. The grief, the anger, the acceptance (still working on that one). The course of my and my family's life was altered drastically that day. The past 5 years have brought about the greatest heartbreak and deepest challenges of my life. Yet, I know that the worst is still to come.

Five years ago, I wouldn't have guessed that Mom would still be with us today. According to the pamphlet that UCLA sent home, the average duration of FTD is around 7 years (at a follow-up appointment, the UCLA doctor told us the average for semantic dementia is 12 years, though it's different for everyone). Although it's hard to know exactly when this all started for Mom, we can trace signs back as far as 2007. By late 2009, we knew there was definitely a problem. That means that, while it's been 5 years since diagnosis, Mom has been dealing with this disease for 8-10 years now.

At this point, she is in the later phases of the disease, nearing the last stage but not quite there yet. Cognitively, she is very late stage, but the final phase brings about a disconnect between body and mind; the mind stops telling the body what to do (walking, talking, swallowing, eating, etc). Mom is still ambulatory (mobile) but I believe we are starting to see swallowing issues now. I would say that a majority of the time that she eats and drinks her water, she ends up coughing on the water. She isn't completely chewing her food either. Sometimes when she coughs, she will spit out chunks of her sandwich. A few times, she has coughed so hard that she's thrown up and we've seen the same issue with her partially chewed food. Other times, remnants of her food remain in her mouth and she doesn't swallow it all. Luckily, all she eats is pb&j and that is pretty soft going down and dissolves after being in her mouth for a while. If she were eating meats or vegetables this would be much more problematic.

If I'm just being completely honest here, it's a blessing and a curse (maybe curse is too strong of a word) that she is still here with us, 5 years later. It's a blessing because we've had time to make preparations and process what is to come-although I don't know if I will ever be fully prepared for "the end". It's a blessing to be able to serve her and care for her, even though she may not understand it now; it is a growing and learning experience for all of us. This has stretched me in ways that I didn't know I could be stretched. It's a blessing because she is still here physically to hug and love on (even though she pushes us away, lol), to say I love you to, to remember. I think one of the things I fear when she's gone is that people will just forget her. The hard part with this disease dragging on is watching her suffer and lose all quality of life, watching her forget everyone around her, watching the tears as she struggles. It's hard to see my dad go through this; I know he struggles but he handles it like a champ. He doesn't ever complain about her, even when he's up 20 times a night with her (no joke!) In fact, just last night we were talking on the phone and he told me that if she wants to get up 10 times a night and fix sandwiches or look out the front door, he'll get up with her 10 times a night and he will re-tuck her into bed just as many times. "One day I will miss it," he told me. His strength, love and dedication is a great lesson to me (it brings tears to my eyes just thinking about it). [He is probably going to be embarrassed that I write this, he is very humble and doesn't see himself as the inspiration that others do].

Five years goes by in a blink. I'm fairly certain that we don't have another five years with her; I'd be surprised if we have two (although I never thought we'd make it this long!) But as long as she is here, I will continue to love her and care for her to the best of my ability. Like my dad said, one day we'll miss this.

Below are pictures of her progression, from before diagnosis and then from 2010-2016.


Before diagnosis


2010- right around the time when we knew something was wrong and were seeking answers


2011-a year before diagnosis


2012- her birthday, the year she was diagnosed


2013-our last family camping trip


2014-the year of dark make-up and (later) the blue eyebrows


2015-the best picture I could get for Mother's Day


2016-taken last Mother's Day


Not quite 2017, but close enough (taken at Thanksgiving)

Friday, January 20, 2017

Update on Mom

One question I get frequently is,

"How is your mom's progression? Does it seem to be a consistent downward slope or does it plateau before going down again?"

I used to think she was traveling a continual downhill slope; her progression seems fast at times. Six months ago she definitely seemed to take a quick turn downhill. Practically overnight, we had to transition her to diapers full-time due to the daily accidents she was having. She was eating less, sometimes going hours at times without fixing herself a sandwich. She even had a couple of incidences where my dad found her on the floor, unable to get up on her own. I thought the worst was quickly approaching and I had a terrible pit in my stomach for what was lurking around the corner. However, things seemed to have plateaued since then. There have still been slight declines in almost every area, but not the full downhill slide that I was expecting. In fact, in some ways things have improved. For example...the summer presented so many diapering and poop issues. I won't go into detail, but suffice it to say that those issues are not arising at the moment whereas in the summer it was a frequent (and sometimes daily) occurrence. I know it could change again tomorrow, but for now we are counting our blessings!

So here we are, at the start of 2017. I like to give a full update each year (sometimes twice a year, if I'm really on the ball). Comparing the last year to the present year always puts her progression into perspective. This is what Mom's stage is looking like as of right now:

LANGUAGE: The only real recognizable word is "Bud". She attempts to say my name; it comes out as "Cuh-suh-suh-suh". Every now and then we might pick out a familiar word, but she mostly speaks gibberish. There are some repetitive "words" that she says daily, but we aren't really sure what those words are. Sometimes we can figure out what she's saying by her gestures.

HYGEINE: She no longer brushes her teeth. On occasion, she will pick up the toothbrush off the bathroom counter and swish it in her mouth for 2 seconds before briefly running it under a quick stream of water and returning it to it's place. Her gums are very red and swollen and her teeth have seen better days. I picked up an electric toothbrush for her about a month ago and started brushing her teeth while she's in the shower; she doesn't remember to spit out the toothpaste. She cries the entire time I'm brushing, so I try to keep it brief. I'm not sure how much difference it's really making at this point, but at least we can say we've tried. When it comes to brushing her hair, she used to allow me to brush it for her while she pat her face with a make-up sponge (going through the motions of putting on her daily make-up). She no longer makes an effort to put on make-up and won't stand still long enough for me to brush her hair. I usually follow her to her bed after she's clothed from her shower and try to quickly brush her hair before she swats my hand away and lays down. The other day I was able to cut her hair again (it had to be done quickly, in the one minute that she sat down to eat her pb&j) and the shorter length does help with the hair washing and brushing.

BATHING: She does not participate in any of her own bathing. Six months ago she would hold out her hand and at least rub the shampoo onto her hair. She might do that every once in a while, but for the most part shower time consists of me getting her in the shower and her fighting me to turn off the water the entire time. Sometimes I try to sing to her and distract her a little bit; if I'm lucky she'll give me a grin but she really hates being in the shower these days. We have a system: I rinse her down, she turns off the water so I then wash her down with soap (while she tries to get to the towel on the other side of the glass). I then turn the water back on. I rinse her off, she turns off the water and then I quickly get in to brush her teeth, followed by one last rinse off. The whole while she is usually crying; this is relatively new. She really hates showering. I always feel so bad when she starts crying, but it has to be done. When I'm finished, I then pass her a towel but she doesn't dry herself off. She grabs the towel and then attempts to put it on the floor to stand on (despite the fact that I already have a towel laid down on the floor for her). I dry her off, top to bottom, and I get her clothes on her. She will hold up her arms for her shirt and help pull up her pants.

TOILETING: Mom is in diapers full-time, mainly because we never know when she's going to end up wet. She does use the toilet still, interestingly enough. But she usually wakes up with a full diaper in the morning and is wet by the end of the day.

EATING: Mom's been on her pb&j kick for quite some time now. The most significant change within the past 6 months in terms of her eating is that she longer drinks her Ensure. Now she is on a 100% pb&j diet. My dad gives her vitamins with her meds and she only drinks water.

ROUTINE: I remember when her routines were such a headache for us because we could never get her to stray away from it; she was so rigid and so unflexible. She wouldn't even take a pill one minute too soon! She no longer has a schedule but she has a routine of sorts and it usually runs in 20 minute cycles. All day long, she makes a circle from her bedroom to the kitchen to make a pb&j sandwich, to tapping her plastic medicine dish on the counter for medicine, to banging on the front screen door to get out, to looking out the window, to going back to her room to lay down. As she makes her way down the hallway, she tries opening every door along the way. We've had to add baby locks on the bathroom door (because she was getting into the soaps and rubbing them on her face) and dad now locks the office because she was pounding on the computer keyboard, which was messing up the computer. Once she lays down, we may get a 5 minute break (sometimes longer if we're lucky!) and then the cycle starts again. If the weather is nice and we are able to take her outside, it helps to settle her down as she sits on the patio and watches every passerby. We've had a lot of rain this winter, so she hasn't been outside much which has added to her stir-craziness. She rarely tries to go for walks anymore and she doesn't ask to go to Ellen's (this is all new within the past 6 months), although I suspect she might be trying to ask to go to her sister's house; it's too hard to understand anymore. Since she wants to make pb&j constantly (and usually only takes 1-2 bites out of each sandwich she fixes), we cut the bread into quarters for her now to cut down on waste. If her dish banging becomes too much to handle, we slip some Jelly Belly jelly beans into the dish and she swallows them as if they are medicine. So I guess I lied when I said she's on a 100% pb&j diet...she gets those jelly beans in there ;) She does wind down at night, but still gets up several times during the night and goes about her routine, which makes for lack of sleep for my dad. But he never complains about it. He just does what he has to do (and I have no idea how he does it!)

There you have my bi-annual report on mom and her progression. Like I said, she has, for the most part, plateaued over the past 6 months. But things don't last for very long with dementia. The scary part is thinking about what the next downhill slope will bring. She is so advanced in the disease that the next big hurdles to face are issues with choking and swallowing, mobility, complete incontinence and muteness. I wish that she'd never have to go through any of that. Every decline breaks my heart more and more. :(

Here are a couple of recent photos of mom, taken on Christmas. It was a Christmas miracle that we got her looking (and even smiling!) in the direction of the camera!

Wednesday, December 21, 2016

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.

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!