Necessary Preparations

It's taken me some time to write this post. I don't know why; I suppose the topic is just a bit uncomfortable, but it has to be talked about. I am talking about the inevitable outcome of dementia. The fact is, dementia is a terminal disease. They will not list it as a cause of death on a death certificate (instead they will name it as heart failure, pneumonia, etc), but it is dementia that leads up to the final outcome.

It takes time to come to accept this. For a long while, we held onto hope that we might find a cure or some way to reverse the effects of the disease. While I don't think we can ever give up complete hope, we are wise enough to know that those chances are slim to none. As my mom has declined more and more over this past year, I've begun to have a little bit of anxiety about what the near future holds. By the end of last year, it was consuming my thoughts: what will happen when she goes? Are we ready as we can be? Does anyone else in my family, besides me, feel the necessity and the weight of the decisions that need to be made?

We've talked about things a little bit over the past few years. When mom was more in her right mind she had talked about being buried in the same cemetery as her mom. Oddly enough, mom had even talked about (in earlier times) songs she wanted sung at her funeral and how she wanted to be dressed. Those things are always in the back of my mind. We've had an idea of what needed to be done, it was all just a matter of getting it done. It's a difficult step to take.

After having a conversation with my dad about my anxieties last month, he decided it was time to shop around for a plot and start getting things in order for the inevitable. This is a good idea even when not dealing with a terminal illness, but in situations such as these, it's even more important to get it done. We've learned quite a few times over the past few years, in losing loved ones, how much easier it is to have these things in order beforehand, rather than facing it in the moment of loss and grief.

Dad made a phone call to a broker and got a price on a plot in the same cemetery that mom's mom is buried in. He wasn't thrilled with the price-they've gone up a little since the last time he's done this-so he decided to go down to the cemetery himself and see if he could get a better price. I offered to go with him, but on the day he was able to go, I had my 4 year old home (he would've been a distraction) so he just went alone. He called me when he was finished to share the outcome.

"Were you able to get a better price?" I asked.

"No, I actually paid a little bit more, BUT I was able to get a double plot two spots down from grandma and grandma. What do you think? Do you think that would make her happy?"

It was hard to even put into words how I felt, but I could feel my dad's love and devotion for my mom. I could hear it in his voice, as there was a little bit of excitement that mom would be pleased with the choice he made. Even though my mom is seemingly unaware of all that is going on around her, my dad still thought about her and what she would want, and he was willing to pay a little more to fulfill that wish for her. If this isn't love, then I don't know what is.

Last weekend, on Valentine's Day, we visited the cemetery and decorated the graves of family members that we love and miss. Dad was excited to show us where he and mom will one day rest together, just next to my grandparents. You can see in the picture: the kids are at grandma and grandpa's grave and where dad is laying will be their spot.

To lighten the mood, dad laid down to demonstrate for us where he will be. This may seem a little morbid to some people, but I love and admire my dad's sense of humor; it has really made all of this so much easier to talk about and accept. Although we hate thinking about what is to come, at least we know that we won't have to deal with those decisions in the moment, and mom will be so happy to someday know of this beautiful, final act of love from my dad.

Death will not be the end. It is not a final good-bye, but a "see you later". It is only temporary until we can see my mom again, restored to her perfect, beautiful, self. When the time comes that she leaves this life, it will be hard. Really hard. I still miss my family and friends (who have gone before me) every day. It is an ache, like a homesickness that never goes away, but I believe I will see them all again. This is the faith I hold on to that gets me through the sad times.

Grandma vs. Ryder

A few weeks ago, I was helping mom get ready after getting her out of the shower. She still goes through the motions of doing her makeup but she gets very confused about what goes where. One day, her mascara became an all purpose cosmetic: she used it for her eyebrows, her eyelids and lashes, her blush and her lipstick. On this particular day, she reached for a tube of pink lipstick and took the lid off, staring at it as she tried to make sense of what it was. Then, before I could stop her, she rubbed that tube of lipstick all over her cheeks.

Later that same evening, my 4-year old was entertaining himself while I was getting dinner prepped. I could hear him upstairs and figured he was playing in his room. He came downstairs and sang my name, "Mommy...."

I looked up to see a huge grin of satisfaction on his face, his cheeks bright pink, as he held his sister's tube of lipstick in his hand.

And just to note-he did NOT see grandma's lipstick incident earlier that day. This was pure coincidence. What are the odds?

I've thought about this several times over the past couple of years: how similar my mom and my toddler/preschooler are. There are many phases that they seem to go through together.

For example, they both wear their shoes on the wrong feet. If I don't get each of their socks out for them, they wear mismatched socks. There have even been times when both mom and Ryder wear different shoes on each foot.


Similarly, they have both been known to wear their clothes inside out and/or backwards; although Ryder hasn't done that in quite a while.


They both really love peanut butter and jelly sandwiches. Grandma probably loves it more than Ryder, but pb&j is always the comfort food for him!


They both require some assistance and supervision in the shower. They both need help rinsing out their hair. Ryder will use half the bottle of shampoo if I don't watch him and mom is no different!

Lately, my mom has been trying to sneak her pb&j sandwiches into her room. Oftentimes we will find them hidden under her pillow. When we caught her smuggling the sandwiches in towels and sweatshirts, she found a new hiding place: her pants. We get a good chuckle out of this one. I can't tell you how many times I've caught my 4 year old sneaking candy in his pillowcase and yes, even down his pants!!

Sometimes we just have to sit back and laugh; I even find the things mom does to be somewhat endearing at times. But if you sit back and think about, it really is sad. My mom is operating on a toddler level at this stage of her life. At times it has even seemed like I am caring for two toddlers, the only difference is that my son is learning new things each day; mom cannot learn anymore. It's funny and silly when Ryder sneaks things in his pants or puts lipstick on his cheeks because it's a phase that we know he will outgrow. I admit, we chuckle sometimes when mom does it too. But the sad part is that, while Ryder is learning the correct way to do things, mom is "unlearning" everything she learned in those early years of life. Every week seems to bring about new changes and we see her slip farther and farther away. The farther she slips, the harder it becomes to watch.

Full Update

Last January, I posted a full update about mom and the phase/progression of her disease. I want to document where she is at now, one year later, for reference to my readers who are tracking their own loved one's progression, as well as for tracking purposes for myself.

LANGUAGE

It has become increasingly difficult to understand what mom is saying, even for me. Most of her speech is mumbling although every now and then she will say a word or two very clearly. Those of us who are with her regularly can usually make out what she is trying to say by picking out a word or two that is understandable. For example, she might "speak" several mumbled words but we can pick out "driver" or "cancelled" and we know that she is talking about how she was cancelled as a driver. She uses gestures sometimes, pointing in a certain direction, which can also be a cue to what she is talking about. For example, she might be "talking" and waving her hand up the street and off to the right while and we'll pick up on the word Ellen; this means she is talking about wanting to walk to Ellen's house. We've learned to pick up on the cues and words that we can understand to figure out what she's talking about. But there are times where we are completely stumped and can't make sense of what she's saying.

CONVERSATION

As far as conversation goes...it is mostly non-existent. Mom talks but comprehends next to nothing that we say. Once in a while I might get her to understand what I am saying, usually if she talking about going to Ellen's and I answer (several times) with a "yes" that I will take her. Most times, she seems to not comprehend anything we say or answer to her. We try to use gestures and expressions to help aid in her understanding, but even that is difficult.

Nevertheless, we still continue to talk to her as though she understands. My dad will tell her things and joke around like he's always done. I will tell her things going on in my life (my daughter getting married, reminiscing about certain things) even though I know she doesn't understand. I suppose it's comparable to having an infant; you know they don't understand what you're saying but you talk and smile anyway to try and capture their attention or with the hopes that they can feel your love through your communication.

HYGEINE

Mom no longer bathes at all without assistance getting into the shower. I come over 3 times a week and my dad covers the weekends. She won't undress herself at shower time. To get her in the shower, we have to physically remove her clothing from her, like you would a child, and guide her into the shower. For the most part, she washes herself once she's in the shower. She uses about 1/4-1/2 a bottle of shampoo and conditioner each time and just as much soap and usually requires some help rinsing it all out. Once out of the shower, I help her get lotion on her body (her skin has been very dry lately) and I'll try to get some deodorant under her arms. We help her get dressed so that her clothes are on right side out and frontwards.

Mom still goes to the bathroom by herself but over the past few months has started having issues with that. She uses nearby towels and washcloths to wipe and will occasionally try to flush them down the toilet. She has left a mess in the bathroom (and beyond) a few times; I've been lucky enough to discover and clean up one of those incidents, but usually it's my dad who stumbles into the mess. She has had a few potty accidents but it hasn't been frequent enough for my dad to feel justified in putting her in diapers yet. Sadly, I think by next year's update, the report will be diapers.

GROOMING

Mom still goes through the motions of doing her make up, but she often gets confused at what goes where. This morning, for instance, she used her mascara for her eyebrows, eyeshadow, blush and lipstick. She went through the motion of putting on blush as well (she repeats many of the same steps several times) but she dipped the blush brush onto the blush lid; she didn't realize that the lid was on (it's a clear top). She will use whatever is next to the sink in place of moisturizer, including toothpaste and soap. She also tries to spray body spray (or whatever resembles body spray-for instance, air freshener) on her face. Because of this, we've had to move a lot of products from her line of vision to avoid her hurting her eyes and whatnot. This, of course, leads to her rummaging around looking for things and frustrated that things are not where they should be.

She will stroke her hair a couple of times with her hairbrush after her shower, but most times her hair is unkempt and sticking up-a stark contrast to where she was a couple years ago, when she plastered her hair down and wouldn't let even one hair stick up!

DAILY ACTIVITIES

Mom's routine is completely disrupted. She used to be very rigid on her schedules, as you may remember. Now, her concept of time is almost completely gone. She no longer waits until the time changes for computer time, eating time, bathroom time, etc. She spends her days (and sometimes nights) pacing around the house, looking out (and sometimes banging on) the window or front door. She is either looking for Bud (my dad) or talking about walking to Ellen's. She does like to sit outside on the patio now on the chairs; she gets sneaky though. If you won't stay right beside her she will try to get into the neighbor's backyard or walk up the street. She doesn't take many walks anymore-it's complicated. She will play only one computer game and only for a few minutes at a time. She will lay down to nap now and then, but only for short spurts of time. She changes her clothes several times a day, from pajamas to clothes to clothes she's dug out of the hamper. They are almost always put on backwards and inside out. This rotation of living room/front door, computer, wardrobe changes and naps will continue several times throughout each hour and day. Despite our efforts, we cannot engage her in anything: music, TV, books, puzzles...you name it, she won't engage in it. Except for walks. She still likes her walks (most of the time).

EATING

The only solid food she eats is peanut butter and jelly sandwiches, no exaggeration. We've offered her other foods and she won't eat it. She still makes her Slim Fast and drinks Ensure. But none of this is on any kind of schedule like before. She eats/drinks whenever she wants to. Sometimes that means 2:30 in the morning and some days she will eat 5 sandwiches!

SLEEP

Her sleep is all over the place. Dad is lucky if she sleeps through the night. Lately, she has been up several times throughout the night. She will go to bed at 5:00 in the evening and wake up to start her day by midnight-getting dressed, making a sandwich, etc. Dad usually changes her back into her jammies (to signal bedtime), gets her back into bed and will lay down with her to try and get some sleep, but she will often wake up within the hour and start the cycle all over again. The other night my dad finally got to sleep just in time for his alarm clock to go off. I really don't know how he does it.

CONCEPTS/COGNITIVITY

I'm not sure there's much to say in this section. She doesn't understand most concepts a grown adults would grasp. She is smart enough to try and hide her pb&j sandwiches (in her pants!) to sneak them into her bedroom because she knows we don't like her eating back there (jelly gets everywhere). She is sneaky in a few things, so I know there are some things she understands but it's hard to know what she can/can't comprehend. I don't know if she can write anymore. She used to leave notes around the house but I haven't seen her write in probably a year, at least. Every now and then I'll hear her read something (she'll read the "speed limit" sign in front of Ellen's house; that is her landmark to know where her house is). But other times she will stare blankly at words and seem to not understand them. I think there are probably a few familiar words left that she can read.

There you have it, a full update in a nutshell. Some things seem to be the same as last year but some things are most definitely worse.