Happy Birthday Mom...

...people say she looks pretty good for 84! Not moving real well, thinking is blank.

Wednesday morning, I hit the bathroom and shower at 7:20, Mom was in bed. I'm out at 7:35, and so is Mom, and guess where she's been?

Let's say the kitchen became the bathroom, she turned the wrong way coming out of bed or something like that, found the kitchen, poop everywhere, down legs, on floor, on dishtowels, down the hallway, walked into the carpet; got Mom in the shower, dried off, dressed, to morning Mass, then get the carpet cleaner again, had most of the stuff cleaned up by Noon.

And of course right after she did it, she said 'I didn't do that'.

Perhaps she didn't.

Perhaps there's the old 'rational' Mom and the new 'blank' Mom.

Its the 'blank' Mom that doesn't know what day it is, says she lives in Montana, gets the names of people either mixed up or completely wrong.

Its the 'blank' Mom that can't order and sequencing of clothing, requires help with hand washing (doesn't know warm water, rinse, get the soap).

And the 'blank' Mom still loves flowers and music and large screen presentations at the Aquarium; remember, with dementia, there is never a re-run!

Confabulation

Mom's confabulating badly this afternoon, weaving these weird stories in a really weird/strange voice. Things that seem to 'randomly connected' are Church, School, big dogs, people calling from the Church, little girls, creamed ice cream, about 16 people who cut up the big dogs. This has been happening for about 2 hours this afternoon, but I can put her in the car and drive her around and she's perfectly quiet, I feel like the McDonalds ad that's running here with the baby sleeping in the back set and Dad driving around and around the drive-thru window over and over again!

Something is always moving...

When Mom sits, the hands are moving, the fingers are moving, its either rubbing her clothes, tapping her fingers.

When Mom walks with out my assistance, she's clenching her fingers all the time.

But when she goes to sleep, she's out!

Choices...

for someone with dementia, choices are almost impossible; the normal kind of choices like what do you want to eat, what clothes do you want to wear.

Here's a normal 'choice' task and Mom's usual answer:

'Mom, do you want to have steak or fish for dinner?'

'humm, I don't know, let's have both!'

It happens all the time, so there are things that I don't allow her to try to do, things like ordering food out, and clothes to wear, I just do it for her. I know people think that I'm not such a nice guy when I do it, but I've been living inside the confusion of Mom's dementia for so long....its my little coping mechanism!

Food things...

...wow, Mom will now eat any quantities of food I put in front of her, preferably sweet things. In reading about other's and their experiences with dementia, sweet things rule.

Problem that I've started to see now is swallowing; Mom will eat, chew, get another bite, chew some more, get another bite, chew some more, until she's got cheeks like a chipmunk, I have to 'remind' her to swallow; same with the morning meds, she'll put them in her mouth (after I get them ready and hand them to her along with the water, she won't want to take the water, and when she does, I have to remind her to swallow it. Strangest thing!

A sad day in Arizona and the USA...

Shooting a Congresswoman and a Judge and 10 others in public, shame on this country!

Back to dementia, today is one of those days when I think Mom has disconnected all reason between her brain and mouth. Saturday is the day when we go to Mass at 9AM and 5PM since Mom is usually sweet and nice in Church; so this afternoon Mom will go to sleep for 15 minutes or so, and the next thing out of her mouth is 'we are going 9 o'clock Mass 5 O'clock Mass' and then it becomes '7 o'clock Mass, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday 9 o'clock Mass this morning' and variations on that theme, wanders into the kitchen, then towards the front door, lather rinse repeat. No matter what she says, if its a day, its 9 o'clock Mass 5 o'clock Mass.

Its just so hard to see.

A somewhat better day...

Mom's happier today, maybe its the cookies and ice cream!

As people and our population age, hopefully gracefully, the demands on the medical and care systems are only going to increase.

I met a 'friend' from Church today at the grocery store, he and his wife had moved his parents (Dad, was 91, just passed, Mom is 88) from Arizona where they were in a home up here to Central California into another facility. Apparently Dad and Mom, while together, functioned OK in the facility, but since Dad passed a month ago Mom has really taken a dive. He mentioned in two weeks he's moving her into a Residential Care Facility in Southern California; I don't know a recently widowed 88 year old is going to handle that move, I suppose with the Grace of God she will get by.

Mom's Chiropractor, here's a story. Mom started going to the 'family business' of he and his father 27 years ago after hurting her back picking up a TV set. Recommended by a couple of friends of mine, both Ph.D. level people, they're not stupid. Dad Chiropractor retired about 10 years ago, son kept the business/practice going. Two and half years ago his long-term office person was going to have bypass surgery (long term smoker) and never came home. Two years ago dad had a stroke so he was put into a long-term care home, left side affected. Dad died about six months ago, and his Mom died a month later. Chiro's wife's parents, her Dad died this year, her Mom is in a home now too. Between the Chiro and wife they've lost three parents in one year, had their oldest daughter move back home from college and the younger son depart for college. Talk about 'life change units'!

I've gotten Mom out for a couple of walks today, bright sunshine and cool weather. Don't know if it helps her, but it can't hurt.

Teleporting....

About a year ago, when Mom's dementia behavior was starting to become especially puzzling, the logical part of my mind wondered 'I wonder what Mom is experiencing?'; is she seeing the same things that I am seeing, hearing the same things that I'm hearing, and how do the sensory inputs get processed in the dementia mind.

From Mom's language usage at the time, I felt that Mom's general '180 out' was being reflected in her language; when I was cold, Mom said it was hot, when she smelled something that used to be pleasurable, she'd day it stinks. In addition, things like hot food were 'really hot', cold things were 'too cold'.

I got to wondering, what if I could 'become Mom' for an hour, experience what she is experiencing, then 'come back' and 'become me' again, and report what I experienced?

Would I want to do it? Has anyone else wanted to do the same thing?

I would love to have that ability, as long as I could report accurately. The problem with 'becoming Mom' is that if I truly 'became Mom' I'd not report accurately, because, well, just because.

Reflections...

...from a phone chat with a neighbor...

There's really nothing that one can do about Mom's condition, there's no going back to the way she was even a year ago.

I'm sure (since I've never had any myself) that raising kids must at least be 'hopeful' since one can see progress being made in learning, thinking, reasoning.

It is very hard to find 'hope' with Mom, at least 'hope' that has a time reference of anything more than an hour or so.

So maybe I live hour by hour?

Hardest part about the 'blank' stuff....

Has to be mornings like today.

Let's just say I'm on the third load of laundry, sheets, towels, undies, nighties; and that's after cleaning Mom up in the shower, getting the solid stuff off the floor, cleaning the carpet (thank you Bissell hand-held cleaner and peroxide and white vinegar), making some brunch.

Mom has no idea of what happened.

No idea of where the messes were.

No idea of how to clean it up.

She's blank, but a smiling blank today.

Diapers won't help, she'll just take them off.

Stuff happens!

On Church....

Mom's a cradle Catholic, and adapted very well to the changes in the Church after Vatican II, and was very very involved in Church activities, Liturgy Planning, laundry, all the things that women do as they 'hold up the Church' without being ordained. Before Vatican II she carried a mantilla in her purse just in case she had to go to a Church, since women used to have to cover their heads with something! We got a great new Pastor at the closest church to Mom's home 15 years ago, Mom and I became more involved in the Parish, Mom would drive herself to daily Mass during Lent and Advent, and would attend the Pastor's Scripture Study talks by herself while I was living away, and would then call me to tell me what the Pastor talked about. We also became Eucharistic Ministers, where we assist in the distribution of Communion under both forms of Bread and Wine. Mom did really well with it, until about 3 years ago, when Sundays became difficult.

Difficult because she was forgetting how to do the very basic things one must do as an EM (Eucharistic Minister), distribute the Bread and Wine, and when being a Cup minister, wipe the lip of the cup after a person has received.

8/15/08 Mom fell and fractured her left hip, so that meant impaired movement so being an EM went away for a bit, but after healing she could kinda still get up the step to the altar with my assistance. By Christmas 2008 it was becoming a little too much for Mom to continue with EM duties, so she 'retired'. I still did it, and therein lies the visibility of the problem.

I started to notice that even though we sit in the same place/pew for Sunday evening Mass, Mom would come to Communion, and then get confused as to where to return to. Nice people at Mass would have to 'help' Mom back to where she was sitting when I wasn't able to. Needless to say, the 'getting lost' condition has progressed to a point where she needs assistance going to and coming back from Communion; this is behavior from Mom who used to diagram to people what to do and where to go during Masses.

Mom still knows all the responses during Mass and sings most all the songs, amazing to the music leaders that Mom can still do this.

This is only one portion of what Mom does at Mass that I find terribly interesting and terribly sad at the same time, Mom's been to Communion thousands of times, just why are the connections broken now?

On eating...and food...and history...

I've called Mom the Martha Stewart of her day, she made her own clothes, made houses full of wall to wall draperies, baked endless numbers of Cookies and Cakes, made wonderful meals, and always used cloth napkins at the table, taught be how to eat; fork in left hand, knife in right, cut your meat, lay knife down, switch fork to right hand, eat, chew, swallow, repeat.

It was about June 2010 when I noticed that Mom was getting this quizzical look on her face when I would hand her the fork and knife at dinnertime. She would stare at the knife, and one day she tried to cut meat with the handle of the knife. Result of this, I cut her food for her now.

Just in the last month eating has assumed another challenge, Mom will take a bite, chew, then take another bite, chew, and repeat until she looks like a chipmunk/squirrel. I have to remind her to swallow; I hear this is pretty common in later stages.

Mom's taken blood pressure and thyroid meds for what seems like forever, she used to have a system down where she would put her nightime meds on the top of the bottle in the morning, that way she could see the pills and take them at night. She stopped that two years ago when suddenly the coordinated activity of pushing down on the lid of the med container and then turning became not possible, so I do the meds now. This morning I handed Mom her meds, she put them in her mouth, I handed her a glass of water, she filled her mouth with the water, had to be reminded to swallow.

I had heard stories of dementia people (I've got to get a readily understandable 'better term' soon) who will turn on a faucet, do what they have to do, walk away and leave the water running. I've seen Mom do that too!

When I sorta knew...

...that Mom was declining...

July/August 2008. I came home for a weekend, just like normal, and smelled a burning smell in the kitchen, opened up the microwave, there are a blackened plate in it, the microwave was black on the inside, and Mom didn't know it had happened. Can only imagine she put a plate of food in it, set for 20 minutes or something, and walked away and 'forgot'.

Same time period I noticed that Mom would hang up a half-ironed shirt, the left side ironed, the right side not, and sometimes the shirt would be hung up inside out.

Mom had changed the sheets one day and had two top sheets on the bed, one laid at a right angle to the other.

Kitchen utensils that should go in the drawer on the right, suddenly in the drawer on the left. This '180 out' behavior will go on for a long time.

Mom, New Year's Eve, 2010

Welcome 2011!

What this year will bring, I don't know!

This is a blog, a series of essays perhaps, about living with and caretaking my soon to be 84 year old mother with advancing dementia. Through these writings, perhaps I'll illustrate and convey some of the key moments in Mom's decline. Vibrant...to Bland and Blank came to me while I was reflecting on my formerly Vibrant Mom; I'm aware of other caretakers/Loved Ones who report the 'blank' look that many dementia people have.

Today is January 1, 2011, New Year's Day. 20 years ago today Mom and I, along with my sister and brother-in-law, were up all night prowling Orange Grove Boulevard in Pasadena, CA while the Rose Parade floats were being assembled in Parade Order. For the five/six years before that year Mom would drive from her home to Pasadena and volunteer with my sister in Float Decoration. She would tell me stories of working 18-20 hour days carrying vats of glue for decorations, coming back to my sister's place, falling into bed for three-four hours, and then getting up and doing it all over again. On January 1, Mom and sister would watch the parade, then go to the Rose Bowl Game, and be so tired she'd sleep through the Game.

After a few years of the decorating thing, Mom gave that up, but from about 1995 onwards she would get very excited about the Rose Parade, she'd want to get up and watch it on TV, we'd usually get a re-play of the Parade sometime later in the day and she'd watch that too.

This year, I woke Mom up at about 7:55 to get ready for our ordinary Morning Mass, I turned on the TV to the Parade, and Mom said 'what's that?'

Mom has had no knowledge of Thanksgiving, Christmas, and New Year's Day.

They are just 'another day'.