Tuesday, January 29, 2019

18 Months

18 months.

In some ways it seems like an eternity, and in other ways it seems like just yesterday that I said my final good-bye to my mom.

Life has completely changed without my mom here. I would be lying if I said that things weren't all around easier without the chaos of coordinating caregiving schedules and hurrying over in the mornings to bathe Mom and worrying about her throughout the day, worrying about the future. But I still miss her. I miss being able to touch her, hug her, tell her things; even if she didn't understand what I was saying, there was still some sort of comfort in talking to her.

They say that time heals. I don't believe that's true. The hole is never filled; we simply learn how to maneuver around it. The hardest part about the passage of time is when people expect that you will heal; that you will some how "get over it". The world moves on and slowly forgets the person you've loved so dearly and lost, but you never do. You remember. I remember.

I remember laying across her lap while she scratched my back. I remember the way her face would light up when she talked about her grandkids. I remember the smell of her hair and the scent of her lotion. I remember the way she would play with her hair and tuck it behind her ear when she was nervous. I remember the freckle in her eye and her front tooth that was slightly crooked that she was always self-conscious about, but that we loved because it was a characteristic of her. I remember laying on her bed at night, chatting with her about whatever was on my mind (until my dad would come and kick me out of the room). I remember my mentor, my cheerleader, my mother, my friend. I remember all of her.

But I'm also afraid of forgetting. If I live to be an old lady, I will have lived more than half my life without her. How can that be when she is such a big part of my life? Will she slowly start to fade away?

There are no new memories being made. There are no new pictures to share. And I worry that I will forget. I worry that my children will forget. I am afraid of losing this part of who I am as the time passes and as everyone else around me moves on, and forgets.

Not a day goes by that I don't think of her. Not a day goes by that I don't miss her. Not one single day. There will always be a void.

And so, I cling to the memories I have of her. I continue to talk about her to my kids. I imagine that she is there, cheering them on, cheering me on. And I hope beyond hope that I will see her again one day. What a glorious reunion that will be.

Sunday, July 29, 2018

One Year

One year.

How can time seem fast and slow at the same time?

We have been through our firsts of everything without mom: the first holiday season, the first birthday, the first Mother's Day. And now, the first anniversary of the day she left us. They say that it gets easier with time. If that's true, then why does it still hurt so much? Why have I spent the entire day (and the days building up to today) feeling so down and in tears?

I knew it would be hard. I tried to give myself a distraction. Several months ago, we planned a family vacation for the last two weeks of July. It seemed like a good idea at the time-to get away, having family fun so that our minds don't wander back to that dark time. It helped a little, but I'm really not sure if it was a good idea or not. It did help to keep my mind busy throughout the day, but I also felt a dark cloud lingering over me the whole time. Every morning I woke up remembering what we were doing on that day one year ago; it's impossible to forget. The memories of those last two weeks replay vividly in my mind, the good and the bad; memories of hospice stepping in, of the doctor delivering painful news, memories of taking her for rides around the block in the wheelchair when she could no longer walk, memories of her looking up at me and touching my face, memories of snuggling in bed beside her warm body as she slowly slipped away. I tried to push them out of my mind, but at the same time I want to remember, I want to hold on to those last moments that I had with my mom. I don't want to forget her. And so the memories creep in, haunting me, leaving a deep ache in my chest.

We returned from our vacation last night. We wanted to be home to visit her grave on this day. I wanted to plan something special, something meaningful, for the one year mark. But, I couldn't think of what to do and it was just too depressing to think about, if I'm being honest. It isn't exactly a celebration; this is the day she died. Yet, we couldn't let the day go by without acknowledging her. We ended up keeping it simple: a visit to her grave followed by dinner at my house with a small group of family.

We had a meal that reminded us of her. Mom's spaghetti dinner has always been a favorite, so I made her delicious spaghetti sauce. Some of my early readers may remember Mom's obsession (in earlier phases) with tortellini and mixed vegetables, so Dad brought that, although we didn't use quite as much garlic as she used to. Dad also brought the root beer and we drank with straws, just how she liked. She went through a phase of salad obsession, so Aunt Sharon brought some salad. Of course, the meal would not be complete without pb&j sandwiches, so my sister-in-law, Amber, brought those. For dessert, I whipped up a batch of Mom's chocolate chip cookies, taking me back to the good ol' days when I'd walk in the door after school and inhale the sweet scent of homemade cookies awaiting me for snack. It was sweet to share a meal together-a meal Mom would have been quite pleased with-as we remembered her. By this afternoon all I really wanted to do was cancel dinner and stay curled up in my bed by myself, but I'm glad that I didn't. It helps to be surrounded by family.

I made it through the day, and I even blogged about it. I think that's a victory. My head hurts from crying and I want to go to sleep now. Sorry to sound like a Negative Nelly, but that's just keeping it real. The pain doesn't go away, even with time. You just learn how to live with it, little by little. There are good days and bad days. Some days I feel strong, some days I feel weaker than ever. This is so much harder than I ever imagined.

Wednesday, May 16, 2018

Imagining Life

It's been a while since I've last written. Life is moving forward. The seasons are changing, the kids are growing. It's strange to be in a time and place where my mom does not exist. Sometimes I watch the news or hop onto social media and I think about how lucky she was to never have to see some of the ugliness and craziness going on in the world. If everything I've been taught is true, then she's in a glorious place where sorrow and ugly doesn't exist. Other times I am left feeling sorry that she never got to grow old; she never got to watch her grandkids grow, and see all that they are accomplishing. She missed out on the golden years with my dad. There's an emptiness in our lives without her.

Sometimes I wonder what life would be like if Mom were still here. Who would I be? What would I be doing? I sometimes find myself imagining what I'd be doing right now if Mom were still with us. I imagine the two of us making our shopping list for our upcoming RV trip to Lake Pleasant. I imagine sitting together in church, my youngest sitting on her lap while she looks at books with him and tries to keep him quiet and reverent. I imagine her marveling at Ryder's most recent tooth that he lost and remarking what a big boy he is becoming.

I imagine that I'd be saving a seat for her at the boy's talent show. I would look over at her and she would have that huge grin that she used to get when she was beaming with pride. She would be so proud of their courage for getting up on stage, and of Cody's amazing talent with his guitar.

I imagine her cheering above every other voice in the room, "that's my girl!" when Aubrey takes the stage to sing, just like she did when it was one of her daughter's on stage.

I imagine my kids having sleepovers at grandma's house while Jeff and I go out on a date night. She and dad would probably be spoiling them with trips to the movies or the fair, like they used to do B.D.

I imagine myself, picking up the phone to call her and vent to her about the teenage attitude I'm dealing with, or to ask for recipe tips or advice on any given topic.

If Mom were still here, I wonder how I would fill my days now that all the kids are in school. I imagine that I would be the mom that is at the school all the time, volunteering in the classroom, joining the PTA, running all the activities. Maybe I would put more time and effort in to my home sewing business. I wouldn't have so many distractions- a foundation to run, blogs to write, tears to wipe.

My course in life has certainly been changed by dementia and by the tragic loss of my mom. It has changed the person that I am. The ambitions and goals of my younger self are not the same as they are today and life can never be how it would have been if Mom were here. Now that she is gone, I can't go back to who I once was.

And yet, I'm not sure if I'd want to go back to that person. On one hand, I have much more sadness in my life now. The rose colored glasses have come off and I see things in a different light now; not just my own sorrows and struggles, but that of others as well. My heart hurts for what I've been through and it hurts for what I see others going through. There are some days where I feel completely unhinged and unstable and I struggle with the dark cloud of sadness that often hovers overhead. But, on the other hand, I've heard it said that you can't truly feel joy without having felt pain, and I feel like I appreciate the little things in life so much more.

Going through this has definitely made me a more empathetic person. I feel that I am better able to relate to others experiencing loss because I have felt what it's like to have my own heart ripped in two. I am more aware of other's needs and things I might be able to do to lighten their burden. B.D.(Before Dementia), I would have never imagined myself doing some of the things I've had to do; giving up my time to provide care for someone other than my kids, changing diapers, aiding and comforting someone in their last moments in life, preparing them with all the love and tenderness that one can muster for their final departure of this life. All of those things required sacrifice and they were not always easy or convenient, but I am better off for having learned those little lessons of love. Love means sacrifice and I'm not so sure I completely understood that B.D.

My relationships with family members and friends would not be the same either. My dad and I have always had a good relationship, but I feel as though we have grown a lot closer over the past several years. We have leaned on one another to get through this. We've had some deep and meaningful conversations and I have found myself turning to him for advice many times. My love and respect for him has only grown deeper by his example of unconditional love and care for my mom and for his entire family.

I have always considered myself to have had good relationships with my family, but when my mom got sick, there were a couple of aunts who became like second mothers to me. After my mom was diagnosed, one of my aunts (who lives long distance) started calling me every now and then, just to chit-chat. We'd never really had that kind of relationship before, but the more and more she called, the more I came to see that I had someone else there for me, ready to listen. Now, we talk on the phone at least a couple of times a week, if not more. She's become a mother figure to me and our relationship has become very special and dear to me. I have another aunt who I've grown closer with as well. She was the aunt I used to spend the night with growing up, so we've always been close. But since my mom has been sick, we make more of an effort to have regular family dinners and get together here and there "just because" or to celebrate birthdays. She and my uncle make an effort to be at the kid's concerts and events and I know that both of these aunts are always be there for me in a heartbeat when I need anything. In fact, they are the ones who I leaned on the most the week my mom died. I don't know that these relationships would be quite the same if dementia hadn't have crossed our path.

Because of dementia, I have had to learn patience and forgiveness, both for myself and with others (this is a never ending lesson!). I have learned to rely on and trust in other people. My mom was always my "go to" person, but by opening myself to talking and confiding with other people, my relationships with them have grown stronger and I have discovered a whole "community" of people that I feel a part of. So many people have shown love and support over the years; family and friends alike rallied together to help our family during years of hardship. I had friends who had never even met my mom B.D., but were still at her funeral and serving us through our darkest times. Their examples of friendship have truly inspired me and makes me want to be a better friend and person.

I hate that it took losing my mom to grow into the person I have become, yet there is also a sense of beauty in bettering one self in spite of trials. I can't really say if I am truly better or not, since I don't know the person I would be if this had never happened, but I'd like to think that there are ways that I've learned and grown through this. Lately I have been struggling with myself; feelings of sadness and inadequacy have been creeping in; feeling a bit lost and confused about which path to take in this stage of my earthly journey (another post for another day). Sometimes I wish I could turn back time and go back to a simpler time of life. But I am trying to focus on the beauty rather than the pain and trying to live a life that my mom would be proud of.

Tuesday, January 16, 2018

Quest For Joy

It's been a while since my last post. Partly because the holidays are always a really busy time, but also because the holidays were really hard this year. I didn't figure anyone wanted to read another depressing post about how much I was missing my mom. I actually sat down and tried to write a happier post, but I just wasn't feeling it.

Everyone said the first holidays without your loved one are rough. I guess I didn't anticipate it would be so hard because we had started losing my mom a long time ago. She hadn't known what Christmas was for a few years. Yet, it was different and it was painful not having her there with us physically. No gifts to put under the tree. No hugs to give. No pictures to take. All we could do was visit her grave; a piece of stone with her name and picture on it.

We did, as a family, go over and decorate her grave. I'd like to think she was looking in on us and saw the love we have for her. We visited our other loved ones who are buried at that same cemetery as well: my grandparents, great-grandparents and nephew.

I decided a while ago that I would continue with making English Toffee this Christmas, in honor of Mom. As you may remember, I have been making my mom's famous English Toffee for Christmas and Mother's Day for the past few years to raise money for my mom's caregiving fund. Obviously that need is gone, but I have some devoted customers who look forward to toffee season and I figured it would be a nice way to honor and remember her at the holidays. I decided to make a donation to The DEANA Foundation with the money raised this year. I didn't think it would be a difficult task; I've been doing this for years and have enjoyed doing it for my mom. The difference that I didn't anticipate was that I am no longer doing this for my mom, but rather in memory of. It hit me much harder than I expected. On day one of making toffee, I ended up crying on my kitchen floor, two separate times. I always thought it was over-dramatic in the movies when people would crunch up in a ball and cry; I've never been that kind of crier. I get it now. Thankfully, I was able to pull myself out of it and finish the job. It helped to have my aunt and sister-in-law come over a time or two to help me out so I wasn't alone with my thoughts. I got through toffee season and I made around 90 pounds of toffee!

On Christmas morning, I woke up with the flu. I didn't know it was the flu at first. It started with a slight cough that hurt my chest, and throughout the day I felt progressively worse. I started getting body aches, fever and chills and I just felt tired. It wasn't exactly how I wanted to spend my Christmas, but if I'm being completely honest it did distract me from missing my mom because all I could think about was getting through the day and going to bed at the end of it. Having family around also helped to make the day brighter.

I know my dad struggled a lot this season. I can only imagine what he's going through. I know how hard it has been for me and hard as that is, I have no doubt that it's ten times harder for him. But, we got through it and are looking forward to brighter days. Just after the new year, dad and I visited Mom's grave (as we do every Sunday) and we talked about the struggles of moving forward and feeling joy after losing her. My dad said something that really made me pause and think. To preface this, he remarked how he'd been watching "Castaway" a lot lately. At the end of the movie, Chuck talks about how he survived for four years, alone on that island. My dad quoted a part of the movie; here is the quote directly from Chuck's mouth:

"I knew, somehow, that I had to stay alive. Somehow. I had to keep breathing. Even though there was no reason to hope. And all my logic said that I would never see this place again. So that's what I did. I stayed alive. I kept breathing. And one day my logic was proven all wrong because the tide came in, and gave me a sail. And now, here I am. I'm back. In Memphis, talking to you. I have ice in my glass... And I've lost her all over again. I'm so sad that I don't have Kelly. But I'm so grateful that she was with me on that island. And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?"

My dad has lost my mom and some days it feels that all hope is lost with her. Yet, no matter what, the sun is going to continue to rise each day, whether we want it to or not. It is up to us to decide how we want each day to be. Some days will be easier than others, but who knows what tomorrow might bring? Even through the sorrow, we can find joy. It may only be a moment here and there, but hopefully the joy will soon outweigh the pain.

In thinking about this new year, I've thought a lot about how I can find my joy again. The ache in my heart for my mom will never go away, but I am trying my best to live each day focusing on the good things that I have in my life. Will I stop crying for her? No, I don't believe I ever will. But I am resolved to do my best to focus on the things that bring me joy.

Thursday, November 16, 2017

3rd Annual Purple Boat Float

Last Sunday was our 3rd annual Purple Boat Float. If you've missed my posts about it in years past, it is a beautiful event put on by the Commission of Aging here in Riverside. People come together and sign/dedicate a boat to their loved one who has been affected by dementia. At dusk, we take the boats out into the lake and light tea light candle in them, launching them out into the water. It is a very sweet evening.

It started after a group of us came together to start the Purple City Alliance, which helps bring awareness and training about how to deal with dementia to businesses, making our city a dementia friendly city. I only attended the first few meetings (mom's care had become too involved to continue the meetings), but it is a great thing that our city is doing! The woman who started the Purple Boat Float actually sits on The DEANA Foundation's board now! :)

This year, dad was unable to make it to the boat float. My Aunt (his sister) was throwing a surprise 60th birthday party for her husband in Northern California, so my dad and all 5 of his siblings went up there for that event. I'm glad that he was able to go and have a fun weekend getaway with his siblings; they are a lot of fun when they are together! But, the boat float wasn't quite the same without him. I felt a little "off" this time around, I suppose because it was the first boat float where Mom hasn't been alive. Still, it was a beautiful event. It has grown considerably since our first year and I have no doubt that it will continue to grow more each year.

As always, I set up a booth for the foundation, giving information to anyone who might need caregiving help. I'm usually the only person running the show (along with Jeff, of course) but I was lucky to have a friend (and also board member) join me this time.

Something special about this year was having Mom's brother and sister-in-law join us. My sister, along with Mom's sister (Aunt Claudia) joined us last year, and Uncle Mike and Tia Tina joined us this year. My hope is to have more and more family members join us each year!

I was a little bit worried going into this boat float that I was going to fall apart. I had a really rough week last which included two big breakdowns (right when I thought I was getting better!) I was just recovering from all of those emotions when it was time for the boat float. Even though I wasn't feeling my absolute best (emotionally), I held it all together and made it through the night. It was a nice evening and I was so thankful to have family there with me. I don't think they even understand what that means to me right now, but family support helps me get through the days!

Monday, November 6, 2017

Great Joy & Great Pain

Last night, my daughter performed in our city's version of "America's Got Talent". It was her first competition and the talent for the night was amazing! Over 70 people auditioned and only 19 of those made it into the actual show; Aubrey was one of them. I wrote all about it and posted the video of her amazing performance on my other blog (click here), but the other part of my feelings about the night seemed more appropriate to share here.

First of all, I am so grateful for the wonderful family members and friends who came to support her in this big show. This is the biggest thing she has been a part of and whenever she performs, she always asks who is going to come watch her. I think it gives her confidence to know that she has her own cheering section of supporters and people who love her. Watching her on stage was an extremely proud mom moment for me. She has grown so much over the past year and I'm in awe of this little human that I had a part in creating!

After Aubrey's number, I couldn't help but to think about how proud my mom would have been to see her granddaughter up on stage. Mom always beamed with pride whenever she watched her own children perform. I have no doubt that she would have been there with us and would have been so incredibly proud of Aubrey's talent. So many emotions were stirred last night, and ever since; like the fading fire that has been stirred in the ash. Many feelings that I have been struggling with have been reignited. It's hard to put everything I am feeling into words. One on hand, I feel incredibly proud and joyful of Aubrey's accomplishments. On the other hand, it has awakened feelings of extreme sadness, hurt and even anger.

Nobody ever said life would be fair. Still, there are moments when the unfairness of it all gets to me. I try to be upbeat and positive, but that's not how it is all the time. I feel like I am such a fragile person right now, that I am going to break at any given moment. I think I hide it well, but there are some moments that I really struggle. It breaks my heart that my mom couldn't live to see this. It breaks my heart that Aubrey didn't have a grandma there to cheer her on; it breaks my heart more than words can say. There are other heartbreaking thoughts and feelings I have that are probably better left unsaid. It just plain sucks that my mom was cheated out of this part of her life; that we were all cheated of having her in it. I have lost more than just my mother. I've lost my cheerleader, my confidant, the grandmother to my children, my friend. I miss her more and more every day. I thought it would get better, but some days it only seems to be worse. I don't know when or if it will ever get any better. They say that it gets better with time, but the void will always be there. It will be there at every birthday party, every recital or show or game, every holiday; graduations and weddings and births. We will think about her every time, and we will mourn her all over again. Somehow I have to learn to live with this without falling apart every time.

Forgive me for my negativity. There are still many things to be grateful for. The people who showed up last night mean the world to me. I know my dad would probably rather be watching a football game, yet he comes to watch his grandkids and support them in their endeavors. My father-in-law made an hour drive to be there. My Aunt Sharon and Uncle Tim came. Other friends and family members came out as well and it means a great deal to me to have all of them there in support of Aubrey.

I try to imagine that my mom really is there watching. Maybe, just maybe, she's on the other side with her parents and with her friends, bragging, "That's my granddaughter!" I can imagine the smile beaming across her face and the loud cheering; the heavenly kiss upon Aubrey's cheek. Of course, I have no proof that this scenario could really exist. I have no idea what it's like on the other side or if they are allowed to peek in on us. All I can do is imagine and hope. It's the only thing that brings me comfort.

Monday, October 23, 2017

Caregiver Reunion

One of the strange things about Mom being gone is that the house is always empty. Before, there was always someone there. We had a constant flow of family and caregivers. My dad hadn't needed to set his alarm system in a good couple of years because someone was always there.

Our caregivers became like family to us. They were so involved in our day-to-day lives. Mom bonded with them. The grandkids bonded with them. We bonded with them. Even our extended family members bonded with them, especially through the last week of Mom's life and all of the family activities (and the funeral) which followed. I know that several of my extended family members have become facebook friends with at least one of our caregivers, who was there every day that last week of Mom's life. They will always hold a dear and special place in our hearts for the love and care that they gave to my mom.

It has been a little sad losing them in our daily lives. Luckily, modern technology enables us to keep up with them but it's not the same as having them with us and talking to them all the time, like it was before. Dad and I have talked about having "caregiver reunions" every so often, where we can get together to visit and catch up.

Switching gears for just a minute...you may or may not know that my dad got a pet pig last December. She has brought a lot of fun into the family and has been a sort of companion for Dad. The caregivers all adored her as well and have watched her grow from a tiny, 7 pound pig to a pleasantly plump, 65 pound "mini" pig! We've had a lot of fun with her. People are always fascinated and curious about Miss Piggy and lots of visits have been made, friends bringing their kids over to see the pet pig! We've had lots of fun dolling her up with pearls and piggy polish and my aunt even made her a tutu. This week is Miss Piggy's birthday, so we decided it would be fun (and humorous!) to throw her a little piggy birthday party! Since the caregivers also bonded with Miss Piggy, we decided to combine the piggy party with a caregiver reunion.

3 out of our 5 caregivers were able to attend Miss Piggy's birthday! I wrote about the piggy party on my other blog, but the focus of this post was mostly about reconnecting with our caregivers. It meant so much to us that they came to Miss Piggy's party (and they didn't even think we were being silly about throwing a party for a pig!) It was really nice to sit back, enjoy a meal and just visit with them. How thankful I am for the caregivers that we had in this journey! We hope to have more gatherings together in the future!

And here's a little preview picture of Miss Piggy at her party. If you want to read all about the fun we had and see some really cute pig pictures, click here.