More About Dementia - The Ugly Truth - kind of...

So, this MOOC (Massive Open Online Course) through University of Tasmania is awesome!

We are studying the brain, and this week we begin going to how it works in a sense with dementia.  Wow!  Always something more to learn.

The one thing, though, about dementia is that the diagnosis is never a good one.  Remember, it's about the degeneration of the brain and its functions.

Yes, a Dementia Diagnosis = Cancer Diagnosis.  Only benign dementia doesn't truly exist, and it rarely, if ever is reversed (sometimes with stroke patients, or with some mild forms of vascular dementia, but those cases, too, aren't common).

As the brain deteriorates so do the functions of the body, until it all comes to a final halt.

Perhaps this is how they can estimate length of life after diagnosis.   How rapidly the dementia takes hold determines how soon the final breath will be done.

It's a bit to take in.

I suppose we all realize this, but to have it put out there in black and white is something else.

So, for this week, I'm going to keep it short.

Be kind to those who have it - their journey is awkward and frail.  They may not always know you, but your touch, words, and time do so much inside.

Some Projects Accomplished, or The Week Ending 10/26/2014

Mom has been having troubles with her short term memory for a while; however,  her long-term memory also seems to be taking a hit.  Yet, there are moments when she seems quite lucid and readily active mentally!

This week she played Bingo.  She can't recall much of it, nor the fact that she actually played, but then she speaks as though it did happen.

On Thursday, after her massage, Jean fought through the rains and came over for a visit.  She sat Mom down and they wrote letters.  Mom has not been writing at all in the past months to her friends in Port Angeles who have been so kindly remember her.  So, Jean thought it important that they receive missives.

Mom wrote some, and Jean wrote more.  Together they were able to negotiate about 5-6 letters to various friends of hers.  Then the task of locating addresses came about.  Done! By the time they finished Mom was exhausted and would have no more of it!  And, Jean left knowing she had done a world of good for Mother's sense (although it be temporary) of accomplishment and self-worth.

Today I came to find Mom working her crosswords.  She told me that the med-aide (she told me the name, but I had thought this woman was only the receptionist at the front desk, and that Mother was hallucinating) had come in at 630 and closed her windows and turned up the heat.  This riled Mom so as soon as Harlan left, Mom arose, undid what Harlan had done, and then decided to get up and shower and then go out for breakfast (this was the earliest she'd risen in quite some time - usually it was closer to 9 or 930 for her to appear).

I bumped into Harlan who was working the weekend shift for someone else (Nnte: Harlan had been Mom's med-aid when she first arrived, and they formed a good bond after Mom walked off refusing to re-enter the center one day).  She told me it was quite frigid in the room, and that Mom told her to turn the heat up and close the window, which she'd done.  I remarked that Mom had giggled about getting up and undoing it all.  Harlan smiled and said, "She's still the same."  We had a good laugh.

Next, we had to find Mom's compression stockings.  We found one, but its mate was nowhere to be found, nor the second pair.  Where could they be?  Well, we found the missing mate in Mom's side purse pocket (you tell me - why would someone put a compression stocking in their side purse pocket????!!!!).  Ah me.

As the time had gone past attending Mass with good form, we discovered that Mom was running low on wine, so we went over to the store and purchased some candy, wine, and hot chocolate for Mother.

As I placed her favorite type (Mango/Strawberry Moscato) in the cart, Mom spied a Raspberry wine.  She wanted it.  I questioned the choice - was she promising me she'd drink it?  I wasn't going to buy it if she turned it aside once it was presented to her.  She promised.  Then came the bottle of Shiraz (Yellow Tail - this used to be her absolute must have wine).  We bought that one, as well.  So we went through the checkout with 4 bottles.

Later, Mom asked about the wines I bought.  I told her the Mango/Strawberry.  She sneered and said, "Yuck!  That sounds awful!"  I reminded her that this was the wine she'd been drinking for several months and enjoyed.  "No, I haven't.  That isn't the type of wine I've been drinking.  You wouldn't know, anyway, since Mr. Manning (the cottage director) buys it for me."  Okay.  battle not worth fighting.
  "And we bought some Raspberry Moscato."
  "Blech!"  Does anyone really say that?  Obviously.  "Why would you buy something like that?  It sounds repulsive!"  I reminded her of our earlier conversation at the store.  She insisted it never happened, which, in her case, might be true.
   "What about the bottle of Shiraz?"
    "That sounds reasonable.  You need to take the others back.  I won't drink them."
    "I'm not taking them back.  You chose them.'
    "Not the Mango/Strawberry.  That sounds too frou-frou for me."
                                                      sigh

From the store we ventured through Mount Tabor on our way to Jean's for lunch.

Finally arriving, after seeing some of the aftermath of the windstorm from yesterday, we were treated to lovely and delicious French Toast!  Featuring Beaverton Bakery Apple Cinnamon Bread.  Delicious!
Mom had a healthy serving.  We all enjoyed the great bacon, as well!

We had a wonderful conversation, and then Mom sent herself to the living room to recline in the easy chair for a nap.

When she awoke, Jean's son, Terry, and his daughter, Jada, made an appearance.  Mom re-entered and enjoyed the conversation.

To be honest, this was the first time I'd seen her truly engaged in a dialog between several people at once, and enjoying herself.  She wasn't quite 'back to herself', but there were signs of what I remembered.  It was a very wonderful afternoon.

As we left, Mom was telling me she didn't believe Terry was really Jean's brother.  "He has to be one of Bob's brothers, but I don't remember him that well (Bob is Jean's late husband)."

  Terry is my age, so there's over 30 years difference between his father and him).  I probed a little more and said, "I think he's Jean's son."
     "No.  That couldn't possibly be.  He's too old."
I left it at that.

We arrived back at St. Anthony's around 3ish, and I gave the wines to Harlan.  When I re-entered Mom's room, she was ready to go out again, lipstick and everything!
    "Are you ready to go?" she asked.
    "Yes.  I'm going home, though.  Where are you going?"
    "You need to take me to that house for those things?"
     "What things?"
     "You know.  Those things that you told me I needed to take home."
Seriously.  I believe I've seen this conversation in commercials, but never thought I'd be actually involved in it.
     After looping around several times with that train of thought, I was able to take my leave, and Mom was going to rest.

One thing she did say, today, that I found interesting.  She asked me if she could stop the massages.  I asked her reasons for wanting to stop them, and she told me they didn't seem to do her much good.  I will have this conversation with her again this week to be sure, but this clarity struck me as rather interesting.  So, I'll have a conversation with the therapist in the week, just to give her a heads up, in case....

Until Wednesday, Cheers!

Busy! Busy! Busy! The Week Ending 10/19/2014

This week proved to be something of a boon for Mom.  She had some unexpected visitors!

Yes!

Her cousin, Janet, brought her sister, Marion, who is visiting from Allentown, PA, along with her to take Mom to lunch.  I've not heard a report yet, but expect they had a wonderful time!

Mom had Bingo this week, as well, and then her massage.

Later, the RLC came to visit on Friday.  What an interesting time they had.

Mom read them the letters, one-by-one, she'd received from her friends, then, as she finished, she had Connie and Jean sort them into piles on her bed.  After this task was complete, they were bundled and put neatly into a place where Mother could easily access them.

Next, they played Scrabble.  It seems Mom wasn't always able to track who's turn it was, but then that's something many have trouble with, while engaged in hearty chitter-chatter with friends.  So, they played.

 Not too sure if they're keeping score any longer, but it's the visiting, the letters, cards, and pictures that help her immensely.

This evening, we had dinner with my brother, Lawrence, and his lovely wife, Kathleen, with whom Mom has grown rather fond.

Mom was up and ready to get going around 6 pm, before having dinner.  She was delighted we were going to eat there.  So, after a couple of glasses of wine, we sat down to eat.

She kept talking about how students and other teachers were going into her room and stealing her soda and tests.  What she really meant was that she believes people are taking the soda and other assorted treats she has from her room at her residence - at least this time she's not talking about how her clothes are missing and books, etc.

Mom enjoys watching some of the SF/Denver game after dinner.

She did mention that her eye drops would crystalize  in her eyes soon after they'd been given.  I'm not sure if this is still the case (in other words, she imagines this is occurring either from the opacity of the drops and her vision, or if she's using her old drops and they are irritating her eyes).

Many of her comments this evening made no sense - that is to say, she would begin speaking about one thing and in the next breath counter that - causing my brother and me to look at one another with a "Wha-----?" glance.

All in all, it was very pleasant.  She took her medications with no struggle, and truly enjoyed herself.

There was one point, in the evening, though, where she was speaking about how people come in and take things, which she really didn't care about as they weren't hers in the first place.  Then, she spoke of how some people see things and think it fine to just take them.  My brother stated, "We don't know anyone who would see something belonging to someone else and just take it, do we?" with a laugh.  Mom, with an instant look of guilt (which vanished in the blink of an eye), turned her head away saying, "NO!"  We had a good laugh.

This has to do with Mom's penchant, in the past, for seeing things in our homes that she deigned would look better or serve better purpose in hers, and then chug off with it.  We would find it missing and then upon visiting her would find it, as though it had always been in its place there.  She would deny she'd taken it, and that we had given it to her.  Hmmmmmm.  Karma?  at least in her imagination.

Quality of Life

One of the questions, of the MOOC (Massive Open Online Course) I'm taking through the University of Tasmania that deals with Dementia, posed in the beginning was just this - How would you finish the statement:  "My Life is Enhanced By..."  

How would you answer this?

How does one measure the quality of life for a patient with Dementia?

Are the Basic Needs Being Met?

Is Physical and Mental Stimuli present?

How About Nurturing?

If you look around the facilities, what do you see?

If we take into account that Dementia has no cure, and the road traveled goes further into an abyss, how do we, ourselves, help make that journey less tragic and more comfortable and interesting for the patients?

There are so many questions that arise from that one above.

Perhaps we should ponder on this as we go through our days, while also considering what we might appreciate if/when we become those patients at home or in care.

Another Doctor's Visit - the Week Ending 10/12/2014

This appeared to be a pretty good week for Mom.  She seemed very upbeat, and she even laughed a bit when I saw her on Tuesday.

We hopped in the car, after her lunch, and drove to see her doctor at Providence Family Medical Clinic.  We were actually right on time!  Hallelujah!

We were taken through the halls, and Mom was weighed in (don't ask - I've no idea, and that is how she wants it!) and then we went to our "room".

Mom is quite sensitive to the blood pressure sleeve, and Victor, the nurse, was unable to procure the numbers as Mom cried out from the tightness.  So, through the technological advances of texting, I was able to obtain the information from the morning and gave it to them.  It looked pretty swell!  Even her heart rate.

One the purposes of the meeting was a check-up, but also to evaluate the medications, and to finish the POLST (End-of-Life plan determinations).    I had Mom's orders from before she was admitted, originally, and the doctor and I were able to get those, as well, from St. A's, where I had them put in place soon after Mom's admittance.   So, now, there's more co-ordination.

Dr. S. engaged Mom in conversation, and it was delightful, as she put it.  Mom spoke of moving back to Port Angeles, getting a new home, and making sure her mother had a place, there, as well, for when she drove up to visit.  I questioned the idea of her (now dead, but we don't say that) 109 year old mother having to go so far.

     "Well, she's sturdy.  She has strong legs," replied Mom.
     "So you expect her to walk those 250 miles to visit you?  Don't you think she's a bit too old?"
     "You're full of prunes! She'll drive.  She's a very good driver," she responded.
     Doctor S sat there marvelling.  Then she and Mom spoke on other topics normal for polite conversation.
     After all was said and done, the doc stated that Mom get a flu shot at a pharmacy (older folks need a stronger dose than we mere mortals, and they don't have that there), and put her vicodin on an "as needed".  The rest was all well.

So, Mom and I left, talking about going to a pharmacy, when we passed one not a block away.  So, we stopped and went in.  Shot done!  No charge with her insurance!  Whoo Hoo!

When we returned to St. A's Mom requested I return for dinner and then to spend the evening with her, but that wasn't going to be.   I reminded her she had Bingo that afternoon, and that seemed to keep the spark in her eyes.

The next day, the RLC (Connie and Jean) came to play Scrabble.  They engaged in wonderful conversation and had a delightful time, as is typical of that little group.

This morning I came in to take Mom to Mass a little later than I'd have liked - around 940.  She was moving about in the kitchen, but pleased I had brought oranges and some candy bars for her.  I unloaded those in her room fridge, then joined her.  She had just arisen, I discovered, but showered.  WE got some coffee, and then the aides brought her breakfast.  We had a nice chat as we did the crossword - you know, she's really not half bad at it, and I corrected only 3 of her clues that were wrong!

Getting up late and grabbing a cup o' joe in the kitchen  before being served breakfast!

By the time she'd finished, it was well after 1030 (Mass began at 10), and she went in to have her stockings put on by the med-aide.  Next, she wanted to chat some more.  Her friend Sharon had written her about the book group, and Mom wanted to call her to see if she could drop by (now, Sharon lives in Sequim or Port Angeles, so this was not going to work!).  She also wanted to discuss the book list.

Then, she explained how the Pope had her great grandfather migrate from Italy to France, then to the US, where he travelled to the West Coast (Washington) to find his wife and children to import them back to Canada.  I questioned this, but Mom stated it was quite natural for people to do this at the wish of the Pope (NB:  Never happened this way!).

Mom is quite comfortable chatting away rather than readying herself for an actual outing!

I tried to get her to brush her teeth, but she stated that her teeth were just fine and didn't need brushing (she brushed them later, though).  Finally, around 11:10 she decided she needed to change for us to leave and have lunch at Jean's house.  WE were able to leave around 11:30.  Whew! 

ON the way there, though, Mom stated that she smelled smoke.  This was a first.  She'd never commented on a smell in months!  The air was thick, though, from the old Toyota Tercel in front of us with bad exhaust.

We had a very pleasant lunch and then Mom needed a nap.  So, Jean took her out and gave her a nice spot to catch a few.  After her nap, though, Mom decided to be a little snippy.  Jean's son, Terry, and her granddaughter, Jada, came by for a visit, as well.  This was very nice.  Jada, a freshman in high school, loves her iPhone!  She couldn't put it down.

Generations certainly view humor differently - and no, I only took the pic - I had nothing to do with their expressions!

When the time came to leave, Mom wasn't at all ready to go.  Trying to motivate her was like removing a tooth attached to a bungee cord with no slack!  Finally, I threatened to throw her over my shoulders (we'd been there 3 hours or more, so it was polite for us to leave).  Her Royal Highness, with the attitude of Dame Wendy Hiller was quite indignant, indeed.

Mom shares her opinion

So, after a very long day I dropped her back off to her room where she could arrange the beautiful dahlias Jean had picked for her....

She was in a great space today...full of spit and vinegar, but some sweetness in there, as well...so all is normal.

The Lewy Lean

Well, this isn't the usual day to post - in fact, by all accounts, I'm four days late!  Please forgive.

Today at the Lewy Body Dementia Support Group I learned something that I hadn't given much thought to - The Lewy Lean.

This is when a patient keeps his/her head down or to the side, and it takes a bit for them to lift it.  Mom does this, and there are times I believe she's either asleep, or it's time to break out the mirror to check her breathing.

This is a typical symptom for LBD.  I'm not sure the cause or the reason, but it happens.  When this was brought up as a question, we were informed that yes, this is symptomatic!  There was a general, "Oooooh!" in the room.  Everyone could relate - but it wasn't one of those things you really think much about (at least I didn't).

The shuffling I look for because someone stated it was a symptom, as is the tiredness and stiffness.  This I probably already knew, but hadn't really given it much thought....

Well, that's the post for the mid-week.  Tomorrow promises to have more (like the doctor's visit, Scrabble, Bingo, and much much more).!

The Week Ending 10/5/2014

This week, Mom enjoyed herself.

She had Jean come over (Connie wasn't able to make it) and they had a very nice visit; Jean got Mom to make out a birthday card for one of her sons.

Mom did pretty well with it - at first.  Then she decided to make it into a card of concern and sympathy.  For her son, she signed it, Mrs. Norma Hunt.  Somewhere in the writing of it she'd forgotten who it was for and what it was.  Jean attached a note explaining what Mom had truly meant.

Jean contacted me about how Mom had forgotten, too, those caretakers around her.  Whether this was a lapse at the time, I'm not sure.  But it signals another slippage and more for us to discuss with the doctor when we see her on this Tuesday.

This morning, however, she was quite full of the wit.  She laughed and was in a jovial mood - until it came time to get going - then her feet were in cement and there wasn't any pushing her!  Of course, though, she did need her stockings - which were hidden.  We found one pair, and these were put on her legs with no problem.  After the aide left, she found the second pair (there is a mysterious third pair that Mom says her mother brought in for her - they're white - I've no idea where they came from), and told me they were still quite damp (they were bone dry) and needed to be put outside and hung from a branch - this is what the manufacturer told her to do, so she was going to do it.  Luckily, Reina was there to intercept them and pretend to put them outdoors.

The rest of the morning went well.  Mass was good, and Mom thought on having Father Mike come to visit her.  I may make the call, anyhow, just to get it started and see how it goes from there.

Later, we had dinner at my brother's house.  Mom was feeling tired, and several times asked to be taken home - but was reminded that dinner and dessert were on their way.  Also, we were celebrating a birthday - this made a small difference to her, and she agreed to stay.

During conversation, she talked about many things - much of which didn't make complete sense in that there was no logic or reason behind her topics.  And yet, she kept going.  AT one point, she told us that her mother, father, brother, and her grand aunts and uncles were all at her uncle and aunt's for dinner (all have passed).  I queried, "Why aren't they coming here?"
"They weren't invited, probably."
I then asked my brother why they weren't invited and he, not knowing exactly what to say, smiled and shrugged his shoulders.  Smart move!

During dinner Mom refused her meds (which has become common place at St. A's for her, I later discovered).  She finally did take one and her vitamins.

When leaving, she decided she wasn't going until she checked her clothes in the closet.  My brother blocked her and reminded her she hadn't any clothes there.  I explained we were going to where her clothes were.  This sufficed.

After taking her home and dropping her off, it occurred to me that her confusion and disorientation has really begun to manifest itself all over.  She didn't nap, although she stated to no end that she was very tired, all day; so I'm not sure that's what it is.  She says she's not sleeping well, either - even though she's on melatonin...so I'm a little lost.

However, we do see the doctor on Tuesday, and we may be able to have some clarity on these issues, or at least ways to treat them.....I'm hoping.....

Mom Goes A Travelin'......The Early Years

I was young.  We'd gone camping to marvelous places, as far as I was concerned.  But Mom had a hankering to just go.

I believe it was sometime around my oldest brother's graduation that Mom took both he and my next oldest brother to Victoria, B.C. for a short trip.  I cannot say she'd not been before, but they went.  Dad kept an eye on my older brother and me.

From then we began to include Canada in our trips.  Radium Hot Springs, Banff, Jasper, Calgary, Edmonton, the Headwaters of the Columbia and Vancouver.  Sometimes in hotels, but 95% of the time we camped.

We went up Vancouver Island, north of Victoria to Ivy Green where we went oystering in the waters.  We loved Miracle Beach, near Campbell River where we took out the rubber raft and enjoyed all that

Evenutally,  we had a tent trailer we would tug behind us, and that made life a little more cush.

Later, we were to journey to my oldest brother's wedding in South Dakota, and of course, we camped along the way; it was the only way to really see the areas we were encountering and appreciate them.  Mom would always be sure that we took advantage of the sights.

Lake Itasca, Shishwaup Lake, The Sun Lakes, more Radium Hot Springs, were just some of the varied places she and Dad would take on their adventures.

Although I wouldn't say Mom was close to being soft, she wasn't really the hardiest, either; however, she enjoyed the adventures, for the most part.  And on our budget, this was quite doable, and, perhaps, far more enjoyable than staying at motels or resorts - we saw the country.

Now, sadly, Mom doesn't recall much of this...she does but she doesn't.  There are snippets of recall, but luckily we have slides and, somewhere (I haven't yet uncovered), more photos yet to be seen!