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.

Graduation

When I started having babies, I always imagined my mom being there for the big milestones in their lives. I was very close to my grandma while growing up. She was there for everything…from the smaller things such as birthdays and choir concerts and piano recitals to the bigger life events-my baptism, graduations and weddings. I suppose I took for granted the fact that I had a loving, active grandma in my life and I naively assumed nothing would be different when I had my own kids.

Every year brings about changes with dementia. This is the first year that my mom is declining to come to her grandchildren’s birthday parties. While she did come to my son’s birthday (in April), she has not made an appearance at any other grandchild’s birthday.

This past month, our two oldest girls graduated high school. This, of course, was a big deal and I spent hours preparing not only for the graduation itself, but for a party in their honor. Even though the girls are not my children by birth (Amber is my stepdaughter and Maurina is my husband’s niece who we adopted), my family has never differentiated them from the rest of our kids. My parents have always accepted them and treated them just as their own biological grandkids. I had always imagined my mom being there for these big life moments. But the concept is gone. This is the first big milestone that she’s missed with her grandkids. I could not even get her to understand the concept of graduation, let alone get her out to a graduation ceremony or family party. I admit it was hard not having my mom there with us. It is becoming a part of life-to not have her there. Though we are adjusting and accepting the fact that mom cannot be “there” for us anymore, every holiday, every birthday, every life milestone has an emptiness without her presence.

On a side note, this post wouldn’t be complete without thanking those people in my life who are always there for me in times when I need them most. I miss not having my mom here to help prepare for holidays, parties, etc; not just physically, but emotionally as well. Thank you to the people who are there for me emotionally and a big thank you to my amazing Aunt Peggy and Uncle David who took time off work and drove down from Northern California for graduation week. While they were here, they made a point to come not only to graduation, but also to my son’s baseball game and my daughter’s swim meet. There were here with me all day on Friday prepping for the party and my Aunt stayed up until midnight the night before their drive down to make cake pops for the party. I am truly grateful that my Aunt takes the time to be there for me and for my children in the absence of my mom. She’s probably the closest thing I have to a mother figure right now and I love her dearly! Also, my sister-in-law, Amber, spent her entire morning the day of the party to help me out with decorating cupcakes and food prep. Anytime I have a big event like this going on, she is always there to help. I appreciate that so much. And, even though my Aunt Ellen was sick and unable to attend the party, her husband brought by a couple of platters of food. She had offered to bring something “since [my] mom isn’t around to help” any longer. That was a very meaningful gesture. Though I will always miss my mom, I am so grateful for the people in my life who try to help fill that void; both those that I’ve listed and many more that I haven’t!

And of course thank you to the rest of the family and friends who came to celebrate with us and shower the girls with gifts and love!