Befuddled, Bewildered, Bemused...OR The Week Ending 03/06/2016

When putting Mom in hospice months ago, it seemed that the end was rather imminent.  Well, I suppose you’d also tell me she had the last laugh!  The change in her has been rather eerie, if not remarkable, but there are still issues hanging in the air that forebode a conclusion - but with this Lewy Body Dementia, it appears there is nothing you can forecast with any great certainty - a bit like predicting the weather during this time of year, here in the Pacific Northwest!

So, here’s what the happy bird has been up to this week:

On Monday, I brought in a protein shake with some powder for her to see if that might help her gain some nutritional value  - as she’s not been eating much I had to figure something out.  And, as you well recall from much earlier posts, Mom loves milkshakes!  Or, rather she did - it was a bit of a gamble, but if she wasn’t going to drink it, then, dammit, I would! 

She liked it.  I made it from unsweetened almond milk, some superfoods, and the protein powder and frozen berries.  I liked it, too.  We put it into a cup for her with a straw.  She tried sucking through the straw, but, although she said she was drinking, there was no discernable evidence that any had been ingested.  After 30 minutes, though, there was a half-inch mark lower than when she’d begun.  Whew!

I also met with hospice, and we had a good chat.  Mom was chipper and alert, able to read from her cards folks had sent her, but she hadn’t a clue what it meant.  On one card, from Nadya, there was a number (like 1782, or something - I cannot recall) and Mom focused on it, repeating it over and over again.  I handed her shake to her to stop the trance. 

On the way out, I also met with Father Pat and Mary, the director.  Mary told me it was during the Prayer of the Dead (which she did right after we’d left from The Last Rites) that Mom sat bolt upright and firmly stated, “NO!”  Wow.  She’s a stubborn one, that Mum o’ mine.

She didn’t eat much else that day, but she did participate in some activities. 

Tuesday and Wednesday, she barely ate.  She did have shakes, though, but it seemed an eternity for her to finish them.  She ate, perhaps, 10-20% of any meal - but only one.  She had no interest in much snack or actual dining. 

Thursday proved a busy day for dear Mama.  Soon after she arose (which is around 11ish now), Connie and Jean arrived to spread love and joy. Here is their account:

Dear Tony,
We got to St. Anthony's a bit after 11 am.  Jean had called ahead to ask Justin to tell Norma we are on our way...he said she was in bed, not wanting to get up, had not eaten anything. (Did not ask about pills.)
Norma looked quite awake when we greeted her but did not rush to get help for rising.  We asked if she wanted something to eat--don't remember if a response there. So we said we would wait outside while she got dressed (this was after Rosa came bouncing in, happy voice, encouraging Norma to get up).
Danny, new caregiver there, came to help.  He looks young and strong enough to help any of the residents.
We waited in the big room, where new lady Lucille was seated at "our" table. After a little while, Norma came out in her musical chair, which plays Humoresque if she changes position, as in getting up by herself. She had on a nice blue/purple Paisley print and gray (?) pants. She was offered a glass of apple juice and drank that readily. We remarked on the rain, then the bright sun that followed it.
She just looked so ready for conversation, bright-eyed and listening to us.  Her responses were usually incomplete, but she was thinking.  She was paying attention to what we said. Connie brought a copy of the Wall Street Journal, which had a few sections that looked interesting.
Lunchtime! The soup came first, with no interest from Mom.  Then a tasty-looking dish of chicken with sauce,  Jean fed Norma some chicken, tiny pieces, potato and string beans...the soup was ignored.  We guessed she ate about 20-25% of her meal.  She had coffee, and another half cup when  offered.
"Put some more cream in it," she said.  Or maybe it was, "It needs more cream."   Connie had a cuppa; Jean was not interested.Then came dessert -  some kind of muffin/biscuit; Norma's was not touched when we were there.

Jean asked Norma if she liked something to drink and she said, with a bemused smile, "That depends on what your mother might bring."  We  chuckled, gently, at that.
The bemused slight smile was a feature of our visit.  At times, she looked ready to say something but didn't.  Again, it was a pleasant, easy visit.  We left about 1:30, having stayed longer than we had planned to.
That's our  story and we’re sticking to it.

Later that same day, my brother, Tom, from Port Orchard, drove through on his way home from California.  He said it was a good visit, Mom was not acting very tired, at all, but wasn’t eating much.  Mom did read for him, a couple of lines, but she had no idea what she’d read. 

Friday, Mom arose around 11, as it typical now, and she did the same on Saturday and Sunday, as well.  She barely ate anything, except her shake, although she did nibble gently at the food on her plate - but not enough to even qualify as a sampling.  She did participate, though, and was quite cheery throughout.

Saturday followed Friday’s course, and Mom provided little rays of sunshine for all the caregivers. 

Sunday, Mom was found eating her lunch - well, actually not eating - but dabbling in pushing it around on the plate.  I handed her shake, and voila!  She is now devouring it much more rapidly than last week.  

She wasn’t much of a conversationalist this week - preferring her paper to anything else.  I did ask how she was feeling and she responded, “Well rested!”

The curse of LBD is that this can repeat itself time and time again.  It’s wonderful she’s doing so well, but knowing there is another plunge around the corner (which corner?  got me!) is worse than Hitchcockian - it’s worse than awaiting the guillotine - it’s the loss of control in knowing what and how. 

So, for now, we appreciate the time we have and we move forward, savoring the moments.

Moving Forward....????

Ah.  The sweet smells of Spring.

As I recall, last year, at this time (I wasn't blogging then) Mom was in her first full month at St. A's.  She wasn't happy.  She was convinced she'd been hijacked by my two oldest brothers, and her furniture was, as well.

Mom at lunch on Monday.  She wasn't thrilled about the photo op - can you tell?

There was confusion, but moreover, she was as angry as a swarm of bees about her furniture being in her room.  She stated quite often and clearly, that she would prefer it go back "home" and she'd be content to sleep on the floor.  Well, we couldn't let that happen.

We learnt, too, that too many activities with the family made her somewhat grouchy and demanding.  Remember, we were all in the learning stages of the illness and her condition, as well.  Some of us were exhausted from the emotional and physical stress of dealing with the matters at hand, and, of course, having to deal with this situation.

Mom was shuffling and stooped as she walked.  She complained about her right side and shoulder being quite tender and shooting pains going up and down.  Vicodin wasn't working very well, and we were having some troubles getting the doctor to see her (especially in the fall, when the doctor decided not to make in-house calls anymore).

As to her medications, Mom was having an issue with the vitamin C pills - they were large, and she complained they were a bit dry.  Now she has gummies - and she enjoys them.

It would appear she is growing better.  But appearances can be false!  Oh! Fie! Fie! Fie!

I was able to find the following link to a pdf from the National Institute on Aging,  - it's free, and it's on LBD, symptoms, medications, etc.  Even though I've been reading a great deal on this form of dementia, knowing there are so many out there who've not realized it exists, it really puts things together in a concise, easy to understand manner.  

Here it is: Lewy-Body-Syndrome-Pamphlet


Now, you can download it, print it, whatever.  It does a great job of explaining.

As I was perusing and poring over the text, I had to think about the changes in Mom over the year.

1.  Hallucinations - These are still occuring, but they are quite benign compared to earlier before diagnosis.   The medications seem to have lessened them to memories, or at least dreams that seem to be real for her.  A Positive!

2.  Shuffling & Walking - Since she began Physical Therapy, and the Massages are Deep Tissue now, she is more able to get around without the stooped posture, and the pain has lessened, although the complaints are there.  Her massage therapist reports that she complains of pain in certain areas which are consistent from week - to - week.  This is also a positive, but the pains will probably grow with stiffness as the disease progresses.

3.  Troubles Swallowing - This is now growing more evident.  At first, as I stated above, she had some issues with the pills.  She still seems to have some problems, but the staff puts some pills in with pudding, which helps her swallow them with more ease.  I tend to give her a milkshake or ice cream which makes her face light up while she swallows them.
     Yesterday, at lunch, after the dentist visit (they were so wonderful!  They didn't even charge!), I took her for a drive around the area and then to a pub.  She was having difficulty swallowing her hamburger.  Once in a while, this would be normal, but she had problems with most of the meal - and drank a great deal of water and iced tea.  This gave me pause, as I hadn't thought about this issue much in the past.

4.  Stooped Posture - Mom is gaining weight - probably from lack of hearty exercise she had grown so used to with her hiking groups, and her daily walks.  But she seems to be standing taller now, and I believe this is owed to the massages and the P/T.

5.  Mood Changes - Mom has been quite pleasant!  This isn't to say she wasn't a warm-hearted person before, but she seems to delight in the small things, now, that she would have poo-poo'd before as nice, but not important.  It's quite interesting to take her about the city where she tells tales of childhood antics, her parents, friends, etc.  Much may be true, but it's a way for her to relate.
    Mom grows stubborn and churlish when her routine is changed - so when the staff goes on vacation she isn't too charmed about that.....
     She does have her serious side more as usual, though.  Now, it's all about moving her furniture back to her home; yet she does call St. A's home.   She has laughed a little more than I recall in the past, as well.

6.  Capgras Syndrome - Nope, not yet.  This is where the patient is convinced someone close to them is an imposter and not really who they say they are.  There are ways to handle this, but each person is different - luckily, not on the list of things to deal with yet.

7.  Blood Pressure - Mom's blood pressure remains stable.  She does take medication this, and enjoys adding the numbers.  She hates the squeeze of the band, though.  I mean, she HATES it!

I believe that's enough for now.

Do please read the pamphlet, though.  It's actually quite complete, and makes me ponder as I read the other books.

Hopefully, Mom will be able to continue to hold off the progression, but for how long, we know not.