Memorial Services for Mom

My dad asked me the other day if I was going to continue writing my blog. I've thought about it a lot. What can I write now that this is all over? There are still so many things I want to say, things I want to write down so I can remember. But beyond that, I'm not sure where to go. Over the next little while, I may write down some of the thoughts and experiences that we had during Mom's last moments of this life. My dad and I thought it might be a good idea to keep this going and share helpful information, updates with The DEANA Foundation, etc., so we will see where it goes. Hopefully people will want to keep reading, but if not, it's therapeutic for me to write anyway.

For this post, I wanted to share about Mom's funeral. There were some friends who weren't able to make it to the service but wanted me to share this with them.

Mom's service was held last Friday, August 11th at the church building she attended as a child and then later moved back to (about 30 years ago). This place was her other home. She spend many hours worshipping, praying, teaching, fellowshipping and serving in that building. It seemed only appropriate to hold her services there.

Despite the sadness and loss, it was a beautiful service. It's an interesting thing: years before Mom passed, she started talking about what she would want at her funeral, "just in case". She shared who she thought would be good at giving a eulogy. She picked out her favorite hymns that she wished to have sung. She wanted my sister and me to sing (the one wish I just couldn't honor...I didn't feel strong enough to sing, but my sister did a beautiful job). My family and I took notes of everything we had remembered her planning for her funeral and put together a beautiful program, honoring her and the life she lived.

We did have a viewing beforehand. Dad really wanted her to look like herself as much as possible, and I know that Mom would've wanted to look her best. Mom had told me on several occasions that she wanted me to do her make-up (she didn't want it left to a funeral home who didn't know her style), so I gathered all the strength I could to honor that wish. It actually ended up being a sweet thing, but I'll save that for another post. Her wonderful hairdresser, who she'd been going to for close to 25 years, went to the mortuary and cut and styled her hair for us. What an amazing gift that was. She looked beautiful and peaceful, as though she was sleeping. In all of the times I'd thought about a funeral, I was always uncertain if I should bring the kids or not. But it seemed to be natural to bring them to the funeral. They all had their sweet moments with grandma before she passed, and they would've been very sad to not attend her funeral and give their last good-byes.

David Robinson put together a beautiful eulogy. My parent's love story was the highlight, a love that saw my Mom through her final days. I'm going to see about getting a copy to add to this post.

We used a slideshow that my husband put together for our gala (you can view the slideshow by clicking here). I absolutely loved this slideshow, especially the video footage that he was able to get in there. I feel like it brought her back to life, if only but a minute.

My sister sang a beautiful song, which I know my mom would be proud of. She loved Josh Groban (the original artist who sang this song) and the words were so appropriate to Mom. I don't know how my sister held it together, but she did. Her friend got some video of her singing.

Mom's brother, Jeff, also spoke. They were the closest of the siblings and it was sweet to hear his memories and stories of my mom from her childhood. I also spoke, on behalf of my family. I shared some of the things that Mom taught us in this life, little life lessons. Some were more serious, while others were humorous and I included some stories and memories to illustrate how she taught us each thing. This included things both before and after her dementia. One thing my dad and I talked about was not leaving out the dementia parts of her life. Hard as they sometimes were, this was still a part of her life and we loved her despite the changes that the disease brought on. In fact, we have many funny stories and memories during this time of life, and we will cherish those forever.

Lastly, we had closing remarks from a dear friend and also leader in our church, Carl Harris. He gave us a beautiful message of hope and healing, reassuring us that this isn't good-bye, but just a "see you later." Mom is happy and free. She is reuniting with her parents and other people she loves. We are the sad ones, as we have this void without her here. But it isn't the end; we will be together with her again someday.

After her funeral service, we traveled to the cemetery where she was laid to rest. Something kind of comical (at least, now it's comical)....when we arrived to the cemetery, the plot that was 2 spaces to the left of my grandparents was dug up. We were a little worried about this because my dad had been thinking that he bought 2 spaces to the right; we thought they'd dug up the wrong grave! Turns out, Dad had looked at the map wrong, so for the past year and a half, he's been taking pictures of the wrong spot. Ha ha. We were just relieved that they didn't dig the wrong spot!

Mom's kids and grandkids each got to keep a purple rose from Mom's arrangement. Dad also bought carnations for each person to throw down on her casket after it was lowered to the ground. Something that brought tears to our eyes was when they lowered the casket; my 3 year old nephew watched as they lowered her and repeatedly said, "They dropping grandma, why they dropping grandma?" I didn't think that he really understood all that was going on; just goes to show that kids pick up on more than what you think. Sweet baby.

Our wonderful ward (church) family put together a nice luncheon back at the church for all of our family and close friends after all of the services were done. It was nice to be able to come back and sit down with family and not have to worry about fixing a meal or going out somewhere to buy ourselves food. They even decorated with purple (which was our theme for the day, since purple is the color for Alzheimers/dementia awareness). They even packed up the leftovers and sent them home with us, so we didn't have to worry about cooking that evening or the next day. What a burden that was lifted from this sweet service that they did for us! We had a slideshow playing (with lots more pictures that people sent in of Mom) during the luncheon and my husband and I put together a track of some of Mom's favorite music that he had playing in the background. I kept myself busy in the week before the funeral by sewing up pillows for all of Mom's grandkids, made out of her shirts, that they each got to take home with them. I embroidered a poem onto the fronts of the pillows, a message from Grandma to her babies.
"This is a shirt
I used to wear
Whenever you
Hold it
Know I am there
Love, Grandma"

My dad said it perfectly, in one conversation we had after Mom's passing: it's like we are mourning 2 losses here. One is the loss of the person she was, the life that we had with her (the life that Dad and she had built together). The second is the person she became. No more obsessive tapping on the doors, no more giggling like a little girl when we give her hugs, no more grabbing dad's hand to take him to the back room to show him the laundry pile that she threw into the corner of her bathroom floor. We miss those little things, yet we still also grieve the person she was before all of this. It's a complicated grieving process.

We are very grateful to all of our family members and friends who came to Mom's service and who have been here for us over the past few weeks. We are thankful for all of the wonderful caregivers that have helped us on this journey; all of her caregivers were there and they have become like family to us. We feel another void not having them around everyday. Several family members and even friends traveled from afar to come pay their last respects to Mom. I had friends who didn't really know my mom, but who came just to be a support to me. We've had meals brought in, gifts left for us, sympathy cards, flowers, phone calls, texts...the list goes on. My dad and I both want to express our deepest appreciation for all of these kind gestures. We couldn't get through this without the love and support that we have received from everyone around us. Since the week before Mom passed, we have had a constant flow of family of friends coming and going. Dad's house hasn't been empty at night since Mom's passing and there have been very few moments that either one of us have been alone. On Sunday, the last of the family members left for home and we are now left to settle into our "new normal" without Mom here. It is hard, but made so much more bearable by the love that we have surrounding us and the faith and hope that we will be reunited with Mom again someday.

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. :(

Mom's Crying Spells

I try to keep pretty positive on my posts, but sometimes this disease is so overwhelming. For the past week I've been in a funk again; it's such a rollercoaster ride. Part of my down mood comes from watching my mom's decline; it seems like every week there is something new that comes up in the progression of her disease. I've also taken on a little bit of freelance work, writing for a website that talks about dementia and caregiving. I just turned in my first assignment which took me nearly a week to gather my thoughts together for and write. While I am thankful for the opportunity to educate others, and also to be able to write down my thoughts and experiences throughout all of this, it can be difficult at times. Especially as I look back and reflect on all that has transpired over the past several years; it brings up many emotions-some good, and some not-so-good.

Even though I like to stay positive, I think it's important to share all sides of this journey, especially for readers who are going through this same thing. They need to know that they are not alone and that it's normal to feel down and discouraged at times. We are mourning the loss of someone we love who is still living, and that's a difficult thing to process.

One of mom's latest "things" that she is doing is crying. They aren't full on tears, but very often she will ramble about something and then her voice gets a little deep and crackly, her eyes gloss up and her lips quiver downward. She's done this a few times over the past year or so, but it is becoming very frequent now. I would say that at least once throughout each visit/encounter with mom, I witness one of these crying episodes. It breaks my heart. I want to break down and cry with her-and nearly did the first time it started happening consistently.

I was helping her blow dry her hair a couple of weeks ago when mom started mumbling something. I couldn't make out what she was trying to say but suddenly, out of nowhere, her eyes welled up, lips turned downward into a frown and her voice was cracking. There were tears in the corner of her eyes and I was a little caught off guard.

"What's wrong mom? What's the matter?" I asked her.

Of course she didn't respond to my questioning, but she continued crying about something. I turned off the blow dryer, looked into her eyes and patted her back, reassuring her that "it's okay". I could've cried myself, although I'm not much of a crier. My heart hurts every time she does this. Much of the time I don't understand what she's saying and I have no idea what she is thinking that is making her feel emotional. Is she scared? Is she confused at what is happening to her? Is she sad? I feel so helpless. I wish I could give her the comfort that she always gave to me.

My sister posted a little sentiment today about our experience over the weekend. I was going to blog about it, but then she wrote it, so I'm just going to paste here what she wrote:

"Sunday afternoon, my sister Cassandra walked with my mom over to my house. As soon as she walked in, my mom began asking, "Jeremy, Dominic, Raelynn?" I tried to explain that the kids were not there, but she continued to wander the first floor of the house looking for them. Finally, she stopped in the kitchen and her eyes welled up with tears. In the entirety of my mom's illness, I have never seen this, as some of her earliest symptoms were apathy and no show of emotion. My sister and I rubbed her back and assured her the kids would be back shortly (I then called my dad, who was just getting to his house with my kids after church, to bring the kids over). My mom sat on the stairs in the meantime, and when she saw one of my cats, she pointed and asked, "What's that? What's that thing?" My sister told my mom that she used to like cats and then took my mom's hand and stroked the cat. When the kids walked in a couple of minutes later and came and hugged my mom, her eyes again welled with tears as she again asked, "Jeremy, Dominic, Raelynn?" She visited for about 5-10 minutes before she was ready to go home.

I have been thinking about my mom a lot over the last couple of weeks, particularly how proud she would be of all of her grandchildren. When I became pregnant with Jeremy at 18 years old, it was not an ideal situation and my mom was naturally worried; however, once he was born, he was my mom's pride and joy. She loved being surrounded by her grandchildren; she loved babysitting, teaching, loving, and being a part of their activities. She shows little interest now; she usually pats them on the head and smiles and then continues whatever she is doing. No doubt that if she was herself, she would be the world's best grandma."

This disease is hard and the hardest parts are yet to come.