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.