Monday, February 1, 2016

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.


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.


As far as conversation 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.


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.


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!


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, name it, she won't engage in it. Except for walks. She still likes her walks (most of the time).


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!


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.


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.


  1. Thank you for taking the time to do this blog. I know that writing this has been painful for you, but please be certain that it is a great help for those of us who have loved ones just a year or two behind your mom. God Bless You.

  2. I know this progression all too well, so sorry you must watch your mother go through it.