Preparing for the Near Future

Looking back over the past two years, again, one is left in limbo wondering what will we be surprised within the upcoming days.

It seems as though we've progressed/regressed (depending on your view) quite a bit.

Shuffling is more pronounced, but perhaps that's from lack of lower body exercise.  I was pondering over Mom's shuffling last night remembering her at home doing much the same in her slippers.  It wasn't that she couldn't lift her feet - it was just the way she liked to walk in the snugness of the footwear.  

Mom doesn't want to walk  much anymore - such a difference!  She's always hated hills, and the last time I  took her to the park for a walk, she demanded we park near a flat surface with short or no hills.  She was able to do the walk and did so quite well.  However, since then, she's not wanted to go very far.  Could it be arthritis?  Could it be that she feels unbalanced enough she doesn't feel safe? this would make sense, as she would not tell anyone out of vanity.

She reads marvelously, yet she refuses to write anything.   Truthfully, her thoughts cannot manage much in the way of writing; she begins with one thought and that segues into others not remotely connected, and this goes on through the note.  Looking back at my birthday card which began harmlessly, I was (probably because I have a perverse sense of humor) amused by her sympathy at my loss.  It went from birthday to a condolence.  But her heart was in it.

One of her friends wrote me and stated that 2 years ago Mom had written her 23 times, the next year 10, and this year once, with the help of Jean.

So, what's going on?

Mom has confided in her friends that her mind isn't quite right, and she has some difficulty with thinking straight.  For her this is a terrible place.

Reading through her journals around the time of her mother's death, she is full of reflection wondering how dementia could have afflicted our family.  The same sort of thoughts came to light when her brother was diagnosed with Parkinson's.  Knowing that Parkinson's can tend to be inherited or gene-linked, this caused her great concern as she began to fear for herself.

As LBD and Parkinson's are related by the little buggers that are Lewy Bodies, they affect different parts of the brain at different times.   And, as both Mom and her cousin, Alice, are both afflicted there is the chance that one or more of us could be next - and yet we haven't the dour outlook as does she.

Aside from the motor problems and thinking there is also the balance which may come next for her.  

So, what happens then?  We adjust her care as it needs to be adjusted.  She's in a great place where they will keep her and tend to her through thick and thin.  There are some places where once they become immobile they need to find another placement.  I was lucky to know to ask when checking out St. A's.

So, whatever the future brings we will face it and work with it as we best can; fortunately we've a great staff working with her who are open to new ideas and help us understand, as well.  

The Week Ending 3/22/2015, or How Little We've Changed Since....

A rather slow week for Mom.

Jean came and entertained her on Wednesday, and Mom was quite happy to see her.  They chatted and played a little Scrabble.

Mom has spent most of her time in her room, unwilling to come out.  Yet, once in a while she will venture into the main salon for a change of pace, I suppose.

She has been keeping the staff from washing her clothes, insisting they're stealing them, or that her clothes are clean and don't need to be washed.  Same thing with her.  They have been able to get her to shower twice a week, under the guise that I insist she do it or they will come in and wash her themselves.  If this were to happen, think Eliza Doolittle in "My Fair Lady" receiving the first real scrubbing!  Although in many ways this scene might delight, it wouldn't be pleasant for all those having to do it.

They've learned that giving Mom her wine at the beginning of dinner is best.  But many times she fails to request it.  If she receives it later than in the beginning, she takes it into her room and partakes in the mornings.  

She's been sleeping in quite a bit, and if she has wine in the evenings she's a bear in the mornings.  I told them to give it to her only if she asks, and that she is not to take it into her room (but knowing her she'd take it anyway just to be defiant).

Today, I popped in to take her to the movies.  She had a choice - Cinderella (which she said sounded childish) and The Second Best Marigold Hotel (which she said sounded stupid).  Once I stated I would buy her an ice cream after the movie, she began to ready herself to go (she just sat there talking about something that made no sense for 10 minutes until I made the promise).

She enjoyed the movie even recognizing some of the actors on the screen.  It was a linear plot, and she stated it was half-way intelligent with no crude, vulgar, or sexual issues.  Whew!

Then she asked, "Where's my ice cream?"

Now, she cannot remember the simplest of things, let alone a thought, and she can remember this?  Oh Boy!

We drove through Jack In The Box and she was upset because I didn't order a chocolate mixed with vanilla, but she received it and was quite contented.  Too much so.  For when we returned to St. Anthony's, she refused to get out of the car!  She told me that while I went in she would wait and then she would go home with me.

Egads!

I finally coaxed her out of the car (if threats can be seen as an active coax) and we went in.  She was rather churlish, something I've not seen for a while, and this got me to thinking.

Is the lack of sugar (I've not been buying her small candy bars or soda) driving her back to her old cantankerous self?  Mentally I've not seen any changes, but her moods and affect are certainly going back to being mean and bossy.  Although she's gained 39 pounds in 4 months, and there's no sign of a decrease from the lack of them, perhaps I  need to make a run to get her these things and put her back on track....I'm not sure.

To sweeten her and make her happy, perhaps it's for the best as these are her twilight years.   While it appears to be an ethical dilemma that has to do with too much sugar and brain insulin, I'm going to give her the sugar.  It's what she wants and it will serve us all for the better - she'll be happier and so will we.

A Trip To the Doctor Confirms Our Suspicions....but not the ones we'd hoped

So, Mom went to the doctor's to find out what was up with all the pain in her pelvic region and her leg.

When I came to fetch her, she was pretty much ready-to-go!  She had one of her diet Pepsi's, and one of the travel magazines I'd brought her the day before.  She very much enjoys magazines with lots of pictures.

We went to her room where I looked for the letter I had brought her the day before.  But, instead, I found several wonderful birthday cards for her!  How well-thought of she is by her friends and family!

Later, a bouquet of tulips arrived from her brother, Peter, in Reno.

When she asked why we were going to the doctors, I told her it was for the pain in her pelvis and leg.  She poo-pooed the thought but came along, anyhow.  How gracious!

While in her room, she put her Pepsi back in the refrigerator, and then stated she wanted to see if there was any more bourbon.  Yes, you heard that correctly...but, obviously, there was none.

I did venture in to pick up the papers on her medications from the med-aid, Cathya, and I also asked her if she could check on the size of Mom's pants.  I plan on just going and buying her some, but in a slightly larger size, as Mom is a bit too fragile to go shopping at the mall.

So, off we went to the doctor's office.

We arrived in good time, and Mom went to work reading about IRA's!  She wanted to know what a couple of the terms meant, but we were interrupted before I could respond.

To be honest, Mom is having difficulty forming words, and making sense out of what she's trying to say.  This was apparent yesterday, but today it's much worse. 

Her blood pressure was taken, and Mom told the nurse that she didn't want to have any more flesh cut from her leg, showing her injured leg from 1978 (this was a hiking accident at Silver Creek Falls, where she fell, and gashed her leg open; it took 2 surgeries and some rehab to get her leg back on track so she could not only keep it, but live).    I reminded Mom it had happened nearly 38 years ago, and she gave me the dreaded 'Keep your mouth shut, or I'll shut it for you!' look.  Oh well....

The doctor came in and we explained the problem.  She asked if there was a urine sample (to check for UTI), but there was none.  So, she asked Mom if she would be willing to produce one.  A rather terse and emphatic "No" answered that.

So, I left the room while she examined Mom.  I could hear Mom groaning in pain, but mostly it seemed rather casual (I was not eavesdropping, I was a few feet away from the door, checking my email!).  When I re-entered, there was a serving set of silverware on the examination table, which had come from Mom's pocket.  Was that the problem?  No.

It seems that Mom has an arthritic hip from her fall several years ago at home.  The pain radiates up and down her right side, and the silverware doesn't help, either.

The doctor tried to encourage Mom to go back to massage, but Mom was adamant that she wouldn't.   Mom then proceeded to explain something but couldn't muster the words, nor the thought.  I looked at the doctor.  She nodded.
"She seems to have severely declined in the past few weeks," I said.
"She has really taken a sharp turn since I last saw her," she replied.  "We'll see you again in April or May."

So, off we went off, her tremoring and shuffling (her tremors are becoming more pronounced of late), but her gait was swifter.    I had placed the silverware into her purse, and she had pinched the magazine, as she was sure she had brought it herself. <sigh>

On the way home, she kept pointing at the water.  She was seeing the clouds as water, insofar as I was able to make out.
We arrived back to St. A's, and I was able to jot down her pants' size.
She went to the bathroom, and when she came out she seemed uninterested in dinner (which had already been served), but they were holding it for her, as they know her habits by now.
So, it would seem that we are on a downhill slide, but keeping hopes up that there is still a semblance of the woman  who resides somewhere inside.

Away and To the Dentist We Go.....Or, a Day with Mom

Wednesday, I went to take Mom to the dentist, something she's been clearly worried about, until last Sunday when she stated that she really needs to see her eye doctor.  Well....

So, I came in, after some very slow traffic, needing her to begin moving.  HA!  as if.  It would appear that when time is of the essence for anyone but her moving slower than a dead snail is an imperative.

After 5 minutes of looking at the coats in her closet, and then another 5 of brushing her teeth, then another 5 of finishing her coffee, then another 5 of her needing to sit, as the pain on her right side was terrible, I was finally able to prompt her to move.

Her walking was stiff and somewhat unsteady, so we needed to hold hands and move slowly, as well.

Getting into the car was also painful, but doable.  Once in, we took off, and I phoned the dentist's office to let them know we'd be a tad tardy.

Mom was full of observations - "Is that the hospital on the hill?" she asked of OHSU.  I confirmed.  Then she went on, "You know, those people just spend their money to show off, but they really aren't all that intelligent.  They're all crazy, you know, walking around and making no sense!"  Yes.  This was to be typical chat for the day.

The dentist ruled her teeth in very good condition, and Mom, as always, was very glad and in great spirits when she left.  She really does like them there.  They do all they can to make her feel special, and Dr. Brad seems to delight in being able to treat her, as well.

So, off we went for a drive to find a place to eat.

We found ourselves at Izzy's, as Mom wanted pizza, and I could think of nothing else I didn't want.  Now, this was an adventure.

We obtained a window seat and the server came over and explained how the "menu" worked.  I took Mom to the buffet, and she went right for the chicken and pizza, then plopped a few veggies onto the plate.  We sat and she imbibed in her lemon soda and water.  

  Walking with her through the line, I watched her plate begin to sag downwards, and she was a little irritated when I offered to help her with it. "What, you think I'm incapable of holding my own plate?"
     "Well, it's tipping downward, and I'm afraid you might lose your food."
     "That's incredibly rude of you.  This is my food!"
I was finally able to wrest it from her and successfully delivered her plate to the table.

Even though you'd think she ate tons, due to her weight gain, Mom actually just nibbles.  Her body was tremoring such that if you weren't aware of it, you might miss it, but it was definitely there - the entire body.

After, we decided it was too late to see a movie at the cineplex, and began to drive back to St. A's, where her mother was waiting for her to help her do some family writing, and my youngest brother was coming with his little girls for a visit (the girls are all in their twenties).  I told her they'd wait  if they already arrived.

On the Marquam bridge she began to panic.   "Where's the dog?"
"What dog?"
"That nice little dog that those nice people gave you at the restaurant?"
I had to think quickly.  "Oh, do you mean Samson?  My little dog?"
"I don't know.  Maybe."
"I asked them to hold on to him for me, and I'll pick him up on my way home."
"Oh.  That was nice of them."
By now, we were at OMSI, to see if, perhaps, we could possibly watch an IMAX.  But parking was an issue, and Mom really was having troubles getting up and moving (the restaurant was an event in getting her out of her seat!  I began to wonder if she wasn't playing it up, by this point).

So, we headed back to St. A's, after a lovely drive through various neighborhoods in Beaverton, Raleigh Hills, Woodstock, and Holgate.

When we finally arrived back at her place we needed to get out of the car.   She asked me to support her right leg and I bent down to do it.  I had barely brushed her pant leg below her actual leg when she gave out a scream of pain!  "
Stop it!  Stop it!  You're being too rough!"

I stepped back and looked at her.
  "What?" she asked calmly.
"I barely even touched you pant leg, and never touched you."
"Oh."  She looked a little guilty.
I gasped.  "You're playing all this up, aren't you!  You're being a real drama queen!"
She let out a laugh.  Then she began to laugh harder.
I believe the pain was real, but nothing as terrible as she let on.  she was able, through the laughter, to get herself out of the car.

But, before she did, I requested a picture of the drama queen.  You can see the results.

Once inside, she began getting herself ready for a nap.  She was quite tired.  It was a good day, and I'm glad we have our appointment on Monday...Perhaps we'll see if she has a UTI, or if it's actually something else.

The truth be known, 4 months ago Mom was in okay shape mentally.  The past three months have seen her decline in her awareness and abilities.  The rapidity with which it's happening is a tad frightening.  But, one never knows with LBD...
And her birthday is coming up on Tuesday!

And the Hits Just Keep On Coming! or The Week Ending 1/11/2015

This was an interesting week for Mom.

She doesn't recall much of it, but boy is she on a mission - and then in the next breath it's in the wind!

She's been rising around 9:30 am every day, feeling rested and relaxed.  Yesterday, she arose after 10:30.  And, to boot, she's still rather tired.

No, she's not been experiencing RBD (REM Sleep Behavior Disorder) that we're aware of, but this is common with Lewy Body Dementia, apparently (and I 'll be writing about it in the coming week - stay tuned!).

She played Bingo, and participated in other activities, although she says she did none of it (she's not quite an accurate reporter).

Jean and Connie came and visited, and she and Mom went through some clothes that Mom says aren't hers (but they are!).  They had a very nice visit, playing Scrabble (did you know that I.E. is an acceptable word?  According to the Dictionary of Mom, it most certainly is!), and chatting.

They've learned some strategies for keeping Mom from trying to leave with them, and this has been quite successful.  Mom is easily distracted!

Today, I was going to take her shopping for some new clothes, but the time grew out of hand, and it took longer to purchase her groceries on my way to see her, so I'll have to figure out a way to get her to remember they're hers, if only to buy them, have her try them on, and return the ones that don't work...Hmmmmm.

Anyhow, she'd told me she was out of oranges, so I bought her two bags of tangerines, which she really enjoys.  As I was putting those and a case of Diet Pepsi in her fridge, I had to take out some cups and glasses she was storing in there.

Next, after the oranges and unpacking the Pepsi, I opened the cupboard to put in some mini chocolate bars she tells me she enjoys.  Voila!  More oranges.
"Mom, you've got oranges up here in the cupboard.  I thought you didn't have any..."
"Well, people steal them.  I don't know who did that, but I need you to be careful with them (sic)!"

I also noted that she had a bag of cards, but it was bulging with Kleenex.  Yuck!  "No, they're just wadded.  I haven't used them," she stated.  I found the idea somewhat repugnant, so I tossed the nose-wipes into the trash.

So, from there, I discovered she doesn't like the socks we bought, as they're not "lacey" enough.  There's another venture I must endure...But, I have sources for information, which I will definitely follow.   So, she's been wearing the same two pairs - with a washout every night...I warned her about how disgusting that was, and if she keeps it up, she'll invite pests, like infections, insects and vermin.  Well, I was told I was full of prunes...So much for that!

We went to Jean's for lunch, and Terry was there with Donuts.  Mom really liked those.  She ate two.  Then we had some lovely hummus and pita chips, followed by Spanish Rice and Mahi-Mahi.  Mom was ready to go in less than 2 hours after our arrival!

However, Jean tempted her with a bowl of ice cream, topped with the last of some rhubarb liqueur given me as a gift years ago.  Mom enjoyed that!

On the way home, Mom wanted to attend Betty's book group in Port Angeles, but Betty, apparently, lives walking distance from Mom's place, now (no, not really, she's about 250 miles away!).  I reminded her that we wouldn't make it until after dinner, and that would be rather rude.  Mom agreed.

She then wanted me to go out and buy her some oranges and soda.  I reminded her I'd done that and put them away for her earlier.  She said she didn't believe me, but when I showed her she couldn't understand why (she'd forgotten she'd forgotten, obviously!  is that a phrase????)

So, after the usual trying to  get me to commit to moving her furniture tomorrow (or tonight!), I left her, ready for a nap.

Mom cannot go to church anymore, unless I was to take her Saturday night, which opens a gigantic can of worms for me...and she's really not that upset that she doesn't go, either, which helps.  They do have services there, at the center, and she's encouraged to attend, which she does, but forgets within the hour.

She is declining, but her spirits are good.  I'm not too sure where we'll be within the year, but that's too far to worry about at this point.