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...

Confusion, deep in the heart.....

.....I've been confused before, just for a moment or two, you know the kind where you wake up from a deep sleep and don't know where you are, or what time it is?

Imagine being like that all the time; that's the only thing, short of getting in Mom's brain, that it must feel like.

Mom can't tell me if its morning or night, she can't determine from light/dark what time it is.

She can't tell what day of the week it is, what she just had to eat, or not to eat.

This morning she got up to toilet at about 2:30 and about 5, both times I woke up to coach/supervise, all came out just fine, but I had to tell Mom to 'pull up nightie, pull down panties, sit on toilet'...all the steps.

This morning later I got up, read, showered, and in the ten minutes I was in the shower we had another bathroom accident of the semi-solid type, pretty obvious to me that she kinda knew about pulling something down, but the step about getting to the toilet was lost, so there it went, all over feet and floor, and then walked in too.

I could tell when I got out of the shower, because of the smell, so lay down some newspaper on the floor so I could walk over it and get the shower ready for Mom, then carefully remove the soiled stuff so as not to add any more to the floor, shower Mom off, get her dressed, then start on the carpet cleaner and the cheapest paper towels I could find to get the worst of the stuff off the floor, with carpet cleaner and white vinegar and hydrogen peroxide, then hit the rest with a real carpet cleaner.

All the while Mom asks 'who made the mess that you are cleaning up', she has no idea it was her mess, no idea of walking in it.

And this afternoon, Mom's caught and stuck on the 'days of the week litany', and just a minute ago she's standing in the hallway with her panties around her knees, so its time for more toilet coaching!

33 months....

...yes, since Mom fell and the resultant hip fracture, I can't believe its been almost three years.

Three years of Mom's decline into dementia.

Three years, such a really short period when placed into the 'cosmic reality'.

Then again, our lives are pretty short, at least the part of our lives that are 'on earth'.

So let's see, what have the last ten days brought, besides more of the same...laundry, bathroom stuff, wandering, repeating, eating with hands, fingers, picking up a fork and asking 'what's this for', trying to squeeze Diet Coke from a can when the glass is right in front of Mom.

33 months ago...maybe what I needed to have happen to realize Mom's condition...

Second Week of Easter....

....and we had some nice Spring Days here, then yesterday got really hot.

Don't know how all this stuff in Mom's mind works/happens, but the last three days have been bad on the 'stuck/repeat/wander' front. Mom has this very strange behavior when she wants to wander, she'll be sitting down, then will sit up with a real start, get this blank/possessed look on her face, and take off (well, its a slow take off!). Wondering if anyone has seen anything like this?

Maybe I'll write more later, I'm just enjoying today where Mom appears to be happy and she's not moving around constantly.

Easter Monday.....

....and we survived the Triduum, Holy Thursday, Good Friday, and Easter Vigil. Mom did OK at the long church services, including the Stations of the Cross around town; I knew that she's not be able to walk it, so on Thursday afternoon we bought a transport/transit chair, its like a wheelchair that is designed only to be pushed, it has the same size wheels on the back as on the front, its not meant to be propelled by the sitter. Worked OK, I walked faster than I've walked in two years since I wasn't walking with Mom, I was pushing!

Mom wanted to go to bed at 5:30 on Easter afternoon, so that's fine, and she was up a couple of times before 10, and she slept until 7:30 this morning. Morning Mass was fine, the chiropractor was OK, Mom looked a little zippier than normal, did some running around, and then this afternoon we're back into the wander mode thing.

Mom will sit down for a minute, then bolt up and walk to a door, the kitchen, the bedroom, the bathroom, flip lights on, flush the toilet, walk back down the hallway, turn off the light she just turned on, then to the kitchen, flip switches there too, open drapes, wander more, flip lights off and on, wander back to the bathroom, flush the toilet, wander back...its now about 3 and she's been doing the thing for two hours now, added to the wandering is 'we're going to 9 o'clock Mass now'; its like she has no knowledge of past and future as it comes to time.

If you've never seen blank wandering, the closest thing that it resembles is sleepwalking.

Thoughts on learning, cognition, and growing up...

...bear with me here, I'm writing from a spot where I have little experience.

When we humans are children, we probably want to try to experience everything, everything is new, we are learning all the time after our brains stop growing. Take a look at a young child, they will put everything in their mouth; eventually the word 'no' is attached with this behavior, and the behavior stops. That to me is called basic learning, if you're told 'no' often enough, or if you are spanked when you do something that your parents don't want you to do, you eventually get it. But all these 'events' are a function of a learning, experiencing, being...one eventually learns how to go to the bathroom, how to use utensils for eating, what the rules of school are, how to look both ways before crossing the street so you don't get hit by a car; they're all things that we learn to mold our behaviors into appropriate ways to act for the environment we are in.

Look at children in a church, for example; you'll see the behaviors of younger ones and their older siblings and they are different, the older ones have learned that appropriate behavior is to be quiet, move according to cues, etc. This to me means that the child has learned how to suppress reactions to certain stimuli, you still have the stimuli, you just learn how to deal with it, and eventually it becomes second nature; your brain 'filters out' some of the stimuli, and use the other stimuli to do something appropriate.

Its like toilet training perhaps, young humans just let things go and flow, we have diapers for that. Eventually older people 'train' children in the 'ways' of toileting, and it can be complicated, sense the urge, get to toilet, take off appropriate clothing, accomplish toileting and cleaning, put clothes back, wash hands, this kind of stuff.

Dementia, as I see it with Mom, is a condition known by problems with ordering and sequencing, and I think this can be evidence of the breakdown of the 'learning connections', the connections that we learn over time about how to 'accomplish' tasks. I've noticed it with Mom and toileting, most of the time she will understand the 'urge' to toilet, but then things break down, she'll not understand that clothes have to come off to make toileting happen, she won't understand or respond correctly to the 'its all done' feeling, and then she won't accomplish the the cleaning and reclothing part of the task correctly.

I'm sure that this can explain a lot of Mom's other behaviors, there's too much 'unfiltered' stimulation coming in for Mom to understand; this morning at Mass she was really confused, she knew that there were prayer books and song books in the pew ahead of her, but didn't know what to do with them except take them out of the little holder, put them in the pew, and then put them back (just like I've seen with very young children). When she couldn't figure out what the books said, she pointed at the cover of one and read her name in it.

At Communion time, Mom turned to me and said 'do we get one of those things too?', the contextual subleties of Communion and church are now lost on her.

I've got a window open over here, one can hear cars from the highway, but the drapes are closed. Mom heard the cars, went to where the noise was coming from, the window, peered through the drape, then turned to me and asked 'what's this?'. Again, a pretty simple thing for many of us to understand, cars make noise, open window lets in noise.

Things that we take for granted, like a shower, I can see become too much stimulation for dementia people, there's a temperature difference with the tile on the shower floor, you've got your clothes off, there's sounds, there's running water, big temperature swings, running water on a body; those of us with 'full minds' know the stimulation to expect and filter out the the other things that are not important for us to understand during a shower. We also understand the ordering and sequencing of what we do in the shower, its a very complicated place and procedure.

For a little 'self-test', try to do a flow-chart of 'going to the bathroom' for yourself, and then look at what could happen if you get one of the actions just a little bit out of sequence. Like if you forgot to wipe when you're finished, you're looking at a mess, or if you don't remember to get the toilet paper and try to use something else, like your hands, then what happens?

There are times I'm sure that Mom has filtering problems resulting in too much stimulation, and there are other times when I think that Mom just gives up, and filters everything out. Those are the blank times!

Autistic and Asperberger's people have similar 'problems' with filtering stimulation and ordering and reacting, I'm still learning about these 'brain' conditions.

I'd love to see some reactions to my little words from those in the early phases of dementia, as well as people who are caring for elders with dementia.

More slippage and a sad meeting....

Mom's slippage is continuing, we're seeing her doctor Thursday AM. I've noticed in the last couple of weeks that about an hour after taking her morning BP meds she gets very relaxed and sleepy to the almost point of fainting, I'm going to mention this Thursday. I'm betting that since we're going in the AM Mom's BP will probably be low, I'm also thinking that cutting the dosage will be something to think about.

We ran into an old friend yesterday at Longs/CVS, Mom and I have know George and Mary for 40 years. The last time we saw them was three years ago at the same place, George drove the car and sat in the car while Mary did the shopping. Yesterday, Mary was there by herself.

They are both 92, been married for 62 years, George was a brilliant meteorology professor and did some of the first work with digital analysis of weather patterns and subsequent computer weather predication, Mary did a lot of volunteer work with churches and distribution of food and clothing to farm laborers. I found out from talking with Mary that the other day George didn't know who Mary was, Mary said that George was totally dependent on her now, he's almost completely deaf, and he's fallen several times with bad effects on his back. Mary didn't know that Mom had fallen also.

The saddest part for me was watching Mom non-react to her long time friend, no expression, nothing.

Vibrant...to Bland and Blank!

Wandering and Dressing, or trying to at least....

Let's look at dressing today and some recent developments, hard to see.

Mom likes to wear pantyhose, so that's fine, and I keep trying to assist her in putting them on.

She'll try the right leg, usually get it done correctly, then will try to put her shoes on, without putting the left leg on!

Today, she got the right leg on, then wanted her shoes, and for about three minutes she took the shoes, reversed feet, reversed direction of the shoes, and had no idea that she had one 'black' leg and one 'white' (without pantyhose) leg. So I got down on the floor and put the other leg in the pantyhose, and got the shoes on the right feet.

When Mom started having her little accidents in chairs I got some old towels out and folded them and put them on the chairs that she sits on; today she's taken the towel off the living room chair, has it in her hand, and is wandering in lazy circles in the living room with the 'blank' look on her face. And now when she walks in the house, her left arm is cocked at the elbow. Wondering what this phase means?

Ok on the bathroom stuff.....

...until 4:30AM this morning, Mom was up and I heard the encouraging sound of 'tinkle' in the toilet, so I figured everything was coming out OK, then Mom comes back to bed walking very strangely, so I get up and you got it, poop on the floor, walked in it, get out the carpet cleaner and spot stuff, then have to shower Mom off too.

'Why are we doing this?' Mom asks, when I tell her she's full of poop and it was all over the floor she retorts 'Must have been someone else, it is certainly not me'...more later!

Changes in the last weeks.....

....are sleep related, Mom's been wishing to go to bed even while still light outside. Yesterday, Ash Wednesday, we went to the 5:30 evening Mass, got home about 6:40, and all Mom wanted to do was go to bed. She had an almost somnabulistic look on her face, one that I can call the 'zombie' look, and just went down the hallway so I could undress her and get her ready for bed. by 6:55 she was in bed and snoring, true it was a busy day with Masses and a trip to the Apple Store for updates and stuff. I got Mom up at about 9:30 for a bathroom stop, she slept through until about 6AM.

I've not really been looking forward to the time change this weekend, meaning more light later and less light earlier. We'll see how she handles it.

With regards to other things, Mom continues to exhibit wandering behaviors, the other day she was up and down from the chair to the front door almost constantly for three hours, classic repeating behaviors of dementia not only limited to verbal things.

This morning in the car on the way to Mass, an 8 minute journey, Mom was upset for some reason about black shoes, she must have asked about black shoes ten times in the car, then when we got into Church she asked if they had black shoes here...and when Father Jim showed up she commented about 'he has nice black shoes'.

Chewing and swallowing are now problems; Mom will eat bites of food like she's shovelling coal into a steam engine, chew and chew, and not swallow unless prompted to. All those 'manners' things that parents teach children are now unravelling for Mom, my new mantra at eating times is 'eat, chew, swallow'.

Ordering and sequencing....

...disorders are quite common with dementia, things like putting on outerwear before the underwear while dressing. I've found with Mom that when ordering really goes away things like morning comes before evening also go away, and if you try to order your day by what you've done, when you can't remember details, you have no frame of reference for the day; every event is descrete!

Today Mom has the 'strolley-mosey-wanders' going on, with the blank/possessed look, she's motoring to some place but doesn't know where, and will go to the same place over and over again.

Her perceptions are also acting up, she pointed at a chair in the living room and said, 'that's beautiful yellow clothes' and then got a yellow pillow off the couch and said 'this is the purse that matches the yellow clothes'.

Wish me luck on a Sunday, its only 9:35 and she's been wandering since 8:45, I'm cooking breakfast now!

Weirdest thing...

I've got towels down on several of the chairs that Mom sits on because of the spontaneous piddling accidents we had a couple of months ago. Recently Mom has taken to picking up the towels (which are light yellow by the way), holding them in front of her face, tracing things on the towel in a line with her finger, and 'reads' the towel and says it has our names written on the towel. She'll do the same thing in the car, and in a church pew, 'see it says right here Tom and Mary Lou'. Mom's reading cloth, plastic, and wood.

Starting to think TIAs....

...are when Mom will bounce off walls, confabulate, won't sit still, talk all night, those sorts of things, and then when the TIA resolves in 24 hours or so, like tonight, Mom is in bed, but she's sweet and nice and smiling, the change from last night is amazing! Praise God!

Oh wow, what a morning....

...and partial night too. I woke Mom up to hit the bathroom at 9:45 and that was fine, I went back into her room at 10:45 and she was mumbling nonsense and did most of the time until 3:30 AM. Then at 5:30 AM she was up to the bathroom again and dragged the tail end of the nightie into the toilet bowl, so we put on nightie number three of the night. When I got her up at 7:45 she had messed that one too, so I bundled up three nighties and told Mom that I going to put them in the wash; Mom said 'Oh that's nice that they have a washer here', Mom's lived here in this house for 40 years!

Morning has turned into the right on the spot 3:30 sundowning, it various and sundry combinations of Anaconda Montana and going to work at the store, what did we do today, her father and mother are alive and they are coming to take her home. The confusion is so amazingly awful, typical statement is 'Where do we live at home? Mom, we live in California. We live in Montana and just came here for a day and then I can go back and work in the store tomorrow, we went to Mass this morning with my mother and father this morning'....and repeat and repeat and repeat.