An interesting Month.....

one of decline for Mom.

This is the evening of 28 June, about 10:20 PM, I woke Mom up to get her to the toilet before a long sleep and guess what, piddled all over herself, undies, nightie, sheet; so get her cleaned up and redressed for bed, then put the stuff in the washer again, and realize this is the third time in four nights she's wet things, and tonight was perhaps the worst, since she was so 'out of mind' that going to toilet was a real problem. This week I've found her walking the house over and over again, usually going to flush the toilet, but today I found her just sitting on the toilet, clothes on and all, and she thought she was in church.

Then again, its June/July, and its about time for another three month step down to happen, I think it may have! If I were to bet on Mom the way she is tonight, she won't see Christmas.

And I'm tired!

'Help me'

and no, this is not the'Help Me' that is followed with 'I Think I'm Falling In Love In You'

I've heard of people in facilities who will sit in their chairs and either moan or say quietly or loudly 'Help Me, Help Me' over and over again, late stage dementia patients who don't know what is happening around them or inside of them.

Mom used to ask 'What are we doing today?' or 'Are we going shopping?', things and questions that tome seemed that Mom registered a sense of time and place, like if its afternoon, time to go to the store.

Needless to say, since Mom's sense of time and place has seemed to leave her, the contextual questions, like 'what are we having for dinner?' don't exist anymore, she can't put the questions together in a 'logical' way.

So now I'm starting to hear the 'Help Me's...somewhere in Mom's brain the search for order, or trying to make some sense of the 'world around her' is there, but when the contextual connections are gone and the ability to make new ones is also far away, all I think they know to say is 'Help Me'.

I started writing this at 7:39 AM, its now 7:52. In this time Mom has been up and down from bed 14 times, 'Help me, what are we going to do' all the while walking slowly down the hallway...'Mom please go back to bed we have lots of time until we have to leave', one minute later.....same thing.

At least she's able to move by herself!

Poop and Wake Up Stories!

6AM, I'm sound asleep, awakened by Mom with poop covered legs, she went this morning, pretty loose, no wiping, she just pulled up her panties.....ick! Get her in the shower, cleaned up, she has no idea of what she did nor didn't do, from 6:25 on she's been babbling about her hometown, has no idea where she is (40th Anniversary day today), there's people in her head telling her things, she wants to drive the car back to home, she's telling me that this is her school vacation, there's ladies coming to get her to go to church. This is as mixed up as I've ever seen her.

Wandering Friday.....

...that's what this afternoon has been, wander back and forth from the front room to the kitchen to either open/close the drapes, then to the bathroom to flush the toilet, lather, rinse, repeat.

Except for one trip to the toilet Mom came out dragging toilet paper behind her, all the way from the bathroom, to the bedroom, down the hallway, to the living room. I asked her what she was doing with the toilet paper and she said 'I don't know, I'll get the vacuum cleaner to get it up'

And all the time the spoken words are the 'Litany of the Days of the Week', starting with Tuesday, ending with Sunday.

Reflections....

While awake at 5AM today, I started reflecting on Mom's decline, and when did I think that something wasn't quite right?

I went back five-six years, with a very common and ordinary thing, the dishwasher, Mom had to ask me which buttons to push to turn it on, get the right setting, and make sure that it ran the hot air dry cycle.

Then I went back 9 years to when I first got a laptop with a CD burner in it. I knew how Mom used to like to play CDs, so I duped many of the CDs that I had and made 'backup' copies for Mom to listen to during the week when I was not with her. She knew how to open the CD player, put in the CD, turn on the stereo, and play.

Suddenly, one day, she stopped playing CDs, just like that. Mom couldn't do it, couldn't get the ordering of 'get CD, open player, put in CD, close player, turn on stereo. Its a pretty simple thing to those of us who can still order and sequence things, but to Mom, not so simple.

Its kinda like the dishwasher, push button for cycle type, push button for heated dry, push start.

So I can see signs of things starting in 2002-2003.

Let's go back to 2007-2008. We have very mild weather here most of the time, Mom's house does not have air conditioning, the few days that it does get hot it cools off nicely at night; if you keep the house closed up and the drapes shut until late afternoon when the breeze usually kicks in its quite nice, when the breeze blows open up the windows and let the cool air in.

Summertime 2007 I came home on a Friday afternoon, and it was hot, over 95, Mom is really hot, sweating, and I come in the house and all the windows are open, the drapes are all open, and its about 85 in the house. Now I can look back and see the signs, but then I thought Mom still had her wits about her so I asked her why the windows were all open and she fabricated a story about walking with the next door neighbor and she got hot and the neighbor said to open up all the windows.

Hindsight being 20-20, I should have seen the sign, but I didn't.

Maybe all we can do is to tell our stories; those who do not learn from history are doomed to repeat it!

Different morning....

....at 5AM Mom was awake and walking hallways; I had awakened about 3:30 and got her to the toilet and must have fallen deeply asleep, I woke up and Mom was gone, lucky, just in the hallway, so I got her back to bed, then I figured I'd hit the toilet too. Two minutes later Mom is walking down the hallway the other direction, looking as she's being attracted to something like a moth to a flame, she ends up in the front bedroom going through the closet in there. Get her back into bed where I am now being serenaded with the old 'days of the week litany' for a few minutes until I think she wears herself out and back to sleep.

The wandering this AM was almost just like narcolepsy, sleepwalking, and Mom's newer wandering has been like that too, even in the daytime.

A particularly sad day...

...for me and for Mom too.

Take all the behaviors that make up the condition called dementia; the spoken repeating, the constant movement of drumming fingers, patting legs, the wandering with the blank look on the face, the 'lost sounds' of looking for me when I've been away for a minute in the bathroom, and then the trail I found in the house this morning after a shower; Mom's done them all today and then some. There was a time this morning when I was sitting at the table and Mom would go from the living room to the kitchen, close the drapes, turn on the lights, turn off the lights, wander the hallway, go to the bathroom and only flush the toilet, wander back and around, then come back and sit down...tap her leg, then repeat all over again.

Decided to take mom for a burger, and she wanted to disassemble the burger to eat the pieces, had a bite, chew chew chew chew, prompt to swallow, then Mom tried to get up and 'go to the car'; and it was about this time when I realized that going to a concert this afternoon was not going to happen; I can't in my right mind even try to take Mom to something that she so used to look forward to for days ahead of time. There's one more aspect of the symptom, loss of sense of time and place, Mom will change our last name to her girl name, we'll be living in Montana and then California, things change over seconds.

I'm just feeling very sad today...for the Mom that was, what Mom has become, and what lies ahead...