The Week Ending 05/29/2016

What is there to say that hasn’t been said.  

On Sunday, last, I omitted that Mom seemed to be beginning labored breathing as I left.  I thought it was more my imagination than anything.  I did mention it to Leddy, who told me she’d check.

My brother and I had dinner on Sunday night and we both agreed that Mom really didn’t look as though she were faring very well - but we knew it was up to her and God to decide.

Monday morning began as a typical work day - rising, putting breakfast and coffee together, then walking the dogs.  I recall talking aloud to myself that it seemed a day that I would be receiving a call from St. Anthony’s.  

I walked the dogs, came home and read the paper.  As I was about to rise from the chair, the phone rang - it was Leddy.

“How soon can you be here?” she inquired.

“Why? What’s going on?” I asked.

“She’s in labored breathing.  I had a dream last night that I needed to be with her this morning, and I came in and found her.”

“What does this mean? Is she transitioning?”

“Yes.”

“How long do we have? Today? Tomorrow?”

“I don’t know.  But better you come as soon as you can.”

“I should be there in a couple of hours - three at the most, but it depends on traffic.”

“That should be okay.”

So, I dealt with things here and left less than an hour later.  Traffic was neurotic, as usual, here in Portland.  I was finally getting close when I received a text from Leddy: ‘Call me when you get a chance.’

I called.

“What’s going on?”

“How far are you?  Are you on your way?”
“Yes.  I’m about 5 minutes away.  Why? What happened?  She didn’t go did she?”  

“I’m so sorry,” her voice was breaking.

It didn’t hit me like a ton of bricks.  Rather, it washed over me and permeated my being.  

I phoned my brother who told me that morning he’d make it over that day.  I told him there was no need.

After calling my other brother, I also called Jean to tell her to cancel her visit for the week, as well.

I walked into Mom’s room.  There she lay, still warm.  I pulled up the Geri chair and sat with her.  I kissed her forehead and apologized for being late.  We had a nice little chat, she and I - albeit I did most of the talking - she responded in my head.  

Hospice came and helped.  Mary, the cottage manager, also offered succor.   I wasn’t sure what to do.  What were the next steps?

After a bit, I drove home and began planning and making appointments with the church, the funeral home, and the cemetery.  

By this time, word was out.  The phone began ringing (both landline and mobile) non-stop.  Somehow I managed to finish her obituary with the help of my brother and Jean.  

At last, though, there was a calm.  There began to begin a sense of knowing, a sense of loss - but this was also embedded in a numbness.  

How do I tell people about her?  How do we communicate what she had to offer and what she brought to the table for those lives she encountered?  

Much has been brought to my attention from comments by family and friends.  So, next week will bring you the eulogy, which I entrust will honor her as much as possible.

Thank you for reading and being such faithful listener.  

For her obituary, please visit:   Norma Hunt Obituary

Slumber Time! OR The Week Ending 05/22/2016

A  week of ups and downs - mostly in the middle, though.  As you know, Mom tends to rally when she goes down for a bit, and this week was no exception - except the rallies were mere minutes long.  You’ll understand as I take you through the week:

Monday:  Mom was very sleepy.  She wasn’t drinking much - but she did have half a glass of juice by the time I arrived.  She woke up and studied my face.  After a few minutes (not moments) she decided she knew me.  I gave her some juice and she finished off the glass from the morning and began on a new one.  This seemed to invigorate her.

She had eaten some yogurt earlier but spat out the fruit.  At least she was showing signs of eating!

Leddy came in and Mom looked at her and with her hand waving in dismissal, said, “Go get the table!”  Leddy and I looked at each other and I asked, “What table?”

“She knows.”

“Mom, do you know who that is?” I inquired.

“Somebody new.”

“No, that’s Leddy.”

Mom stared at me.  Finally, she asked, “That’s Leddy?”

“Yes!” responded Leddy.  

“Oh!  Go get the table!” Mom issued her command again, flicking her arm in the direction of the door.  So, Leddy left and then re-entered a few moments later.  

She was cleaning out Mom’s mouth from the phlegm  (which continued hourly all day), so there wouldn’t be any choking.  

Next, Danny, the attendant, came in with some soup.  Mom managed to eat about half of it but was apparently aspirating some as she began to cough.  At last, she told me, “No more.”  I complied.  

Next came her shake.  She drank a little - but Leddy was afraid it was too thick, so she thinned it out.  Mom still had some troubles drinking it.  We decided that we should begin holding on to her shakes so she could have them later, as well, without troubling the kitchen to make more (this was also so we could measure how much she would ingest on a daily basis, rather than at that one time).  

At one point, Mom looked at me and said, “My legs are hurting.”

“Well, try to move them and see if that helps.”

She stared at me as though I had said something uncanny.  Then her legs began to move around until they rested.  I never was able to get a reasonable response as to whether or not she was now comfortable, though.

As Mom ate, she looked at me and said, “You’re a very good son.”  That warmed the cockles of my hard, cold heart.  

She began to drift off to sleep, holding fast to my hand.  

Next, Tasha, the med-aid, came in and helped Mom with the nebulizer.  This seemed to help.

Noel, the hospice nurse, came and saw Mom.  She had nothing to say, really, except that Mom may still surprise us as her lungs were clear and that the eating may be causing some aspiration of foods.  If this continues, then there could be a problem with more food going into her lungs, and becoming infected.  This would cause a slow, painless cessation of life.

Mom continued sleeping for the rest of the day.

Tuesday, Mom was more alert in the morning, and her coughing had subsided.   They continued with the nebulizer, though.  She drank part of a glass of juice, and a little shake, but not much.  She slept nearly all day, but for that smidgen of time.

Leddy and Morina came in to help change Mom that morning.  It seems Mom wasn’t so thrilled with this and didn’t recognize Morina, so she nearly succeeded with an uppercut to Morina’s chin.  That lady got some spunk, yet!

Wednesday, Mom was very sleepy, and they were able to get some juice in her in the morning.  

Later, Connie and Jean came to pay their respects to their longtime buddy.

Dear Tony,

We checked in at 12:20.  Norma was apparently asleep in bed when we greeted her.  She opened her eyes, and we chatted about the weather, her pretty blue shirt, what we have been doing lately.  Norma at times would try to say something, but the words were not there.

Jean asked if she could hold her hand, so she offered the right hand.  She held it for about 10-15 minutes; she did not pull it away.   Later, after her drink, Jean asked for a hand to hold;  she moved her left hand so she could hold it.

One of us (Connie or Jean) made a comment on something, and Mom said, "I'm aware of that," in a quiet voice.  She was following what we said. Another time there was a second short sentence, appropriate to the subject, which we don't remember.

Norma coughed about 6 times in a row.  They asked one of the caregivers about checking for phlegm.  She used the swab for that; it came up clear of anything.  One other time Norma coughed 3-4 times; neither time seemed to distress her at all.

Tasha came in with the protein drink and straw in a paper cup, asked if Jean would like to offer it to Norma.  So she did, and she used the straw willingly.  She offered the drink several times, with a few minutes in between.  After Norma said she did not want any more,Jean set it aside.  She had drunk close to half of the "shake."

We felt that Norma was awake all the time we were with her, 1.75 hours.  Most of the time her eyes were closed, but she was still awake.  Connie had brought a Columbia magazine showing beautiful artwork in a new shrine in WA, D.C.   Norma barely looked at it, then held it for a while. Connie left it with her; if you see it, take it home to enjoy.

Norma was more awake and alert than in the past two (?) visits we've made. She seemed to be comfortable.

She was much better looking than in that last picture in  Sunday's post.

This missive illustrates how attentive Mom was when I was there Monday.  

Thursday, Mom slept nearly all day, responding from time to time.  At one point, Megan, the med-aide in the evenings, went in to check on Mom.  Mom ordered her to leave, took off her diaper (which was clean), and threw it at her.  See?  She rallies!

Friday, Mom drank some shake, and some juice, but kept sleeping most of the day.  Nothing of much interest happened that day, so I won’t bore you with no details.

Saturday, Mom drank most of her shake.  She also drank at least one glass of juice!  She also had some yogurt.  This was a little cause for a little celebration.  The staff there are so good at keeping me apprised of how she’s doing .  They’re angels!

Today, My brother beat me over to St. A’s, and he was able to see Mom alert if only for a short time.  She was able to drink a bit of juice from the cup.  

When I arrived, Mom was asleep and when she woke she wasn’t really awake.  She held my hand but couldn’t sip through the straw.  So, I sat with her, talking to her as though she could hear me (and yes, I know she could).   

I had brought in some flowers - roses, sea holly, lavender, and fennel.  I was hoping the smells might intrigue her to consciousness.   

She held my hand, adjusting her grip from time to time, but looked so comfortable and innocent.  

It’s odd how the brain works.  

So, what’s in store?  Who knows.  But whatever it is, with Mom it’ll be another adventure - in one way or another. 

To Sleep; Perchance to Dream - OR The Week Ending 05/15/2016

A peaceful week.  Not much happened, but a great deal is going on.  

Sunday, after I had left, Mom went to the Mother’s Day Tea with my brother.  She was awake but didn’t really interact.  They even put a nice hat on her, which she refused to surrender at the end of the event - so they had to negotiate a swap with a hat in her closet.  Same Mom!

Monday, Mom slept all day - we figured she was a little tired from the previous day’s event.  She still drank about 4 oz of juice and less than half of her shake.  She refused the yogurt!

Tuesday, they were able to get Mom up for a short time.  She consumed the same as the previous day and slept most of the time.

Wednesday, they gave her yogurt, and she spat out the fruit.  Hmmm.  She drank the same amount as the previous days and a very tiny amount of shake.  

When I arrived, she was hidden in her blankets - I wasn’t sure she was there!  

This was Mom on Wednesday - I guess she took her turn playing Waldo.

She slept for a great deal of time, and then stirred.  I asked if she’d had a good sleep and she remarked she believed she had but wasn’t quite sure.  We tried to have her drink some juice, but after a “refreshing (her word)” sip, she went back to sleep.  She had no interest in getting up, but after a bit mentioned it would be nice.  So, staff got together and came back in - only to find that she had no intent, let alone interest, in rising.  <sigh>

Connie and Jean came a bit later.  Mom slept through their visit, sometimes waking and making a comment here and there, but for the most part, she was in slumberland.  

They told me they were sure she benefited from the chat they were having if only from the stimulation.  I trust this was so.  

Thursday, Mom slept, but they were able to get her into the great room for a short spell - just for the stimulation.  Eating?  Same.

Friday and Saturday, Mom did not arise, she did not consume any amounts different from the previous days.  

Today, I found Mom in bed.  Leddy seemed quite somber.  She told me she was sure Mom knew about my brother - if only because a mother knows these things.  Mom looked peaceful and quite thin.  Her face is quite gaunt now, and Leddy also stated she wasn’t opening her eyes.  

Well, that changed when I came over and kissed her forehead!  But they opened for only a moment.  

Leddy was able to give her some yogurt this morning (Trix Yogurt - Mom doesn’t like anything else) and an 8 oz glass of juice, which Mom took care of rapidly.  We also gave Mom the shake, but even though she seemed to be drinking it, nothing happened - so Leddy added milk to thin it down - no change.  

Mom just slept.

The little angel is sleeping peacefully.

She coughed, too.  A deep cough.  We contacted hospice and they sent over a nebulizer which staff could hold to her mouth and use while she inhaled.  What does this mean?  We aren’t sure - we need the nurse to investigate, so that’s going to be tomorrow, or since I’ve left, today.   

It’s difficult to tell what’s going on.  Remember, we’ve been through something like this before, but Mom hasn’t had this look before, and there seems to be no strength left in her.  

I’m not going to say it, as I’ve been wrong before, but I’m prepared for it nonetheless.  

I’ll keep you posted.

Happy Mother's Day - OR The Week Ending 05/08/2016

This hasn’t exactly been a week of revelations.  Mom has been rising near lunch time and eating less and less, also taking fewer fluids.  She drifts in and out of consciousness but is quite alert when she is awake.  So, allow me to take you through her week (for what it’s worth).

Mom about a year ago...

Monday - Mom arose late, drank juice, and then had much of her shake - but not all.  She had eaten about 50% of her chicken the evening before (my brother fed her), so she may have been full, still - or so I was assuming (as she really hadn’t eaten much previously).  She did not engage in any activities, but to be around for lunch, lounge afterward, and then to bed early.

Tuesday, Mom arose late, again.  They were attempting to encourage her to eat and drink, but she kept putting her shake down after taking a few feeble sips - finally, after nearly an hour, she did finish.  That was about all she ate that day, with a little coffee and some juice (never any more than 2 glasses).  

Morina decided Mom needed more stimulation, so she took her in her Geri chair to the garden where the sun was wrapping everything in 80-degree warmth.  The photo is Mom actually enjoying herself!  It seems unflattering, but that’s just because her shirt is now too big, and she slouches.  

Wednesday was pretty much the same as the previous days.  Connie and Jean came for a visit and Mom was a little responsive.  Jean tried to get her to eat some of the lunch, but Mom pursed her lips after a couple of tiny bites.  She did drink some of her shake, but no more than half.  

As she was rather reticent to stay awake and converse, the ladies stayed with her and helped some of the other residents while the staff was busy with others (they have their hands full!).   They left after an hour and fifteen minutes, somber.  

I must note that due to so many unforeseen events, the ladies were not able to provide me with their usual recollections; I'm sure I'll hear about what I omitted, but I believe I gave you the gist.

Thursday, Mom woke late and drank very little of her shake.  She did drink some juice, though, but her activities were limited - however, she was alert enough to speak with staff when necessary.  

Friday, Mom ate even less - that is her shake.  She simply refused to ingest anymore stating she was fine.  No matter how much coaxing and encouraging staff attempted, she wouldn’t.  

Saturday was a repeat of Friday.  

Today, Mother’s Day, I brought a couple of bouquets to brighten up her room and put them in the window.  As I entered I discovered they were to have the Mother’s Day Tea this afternoon!  There were hats galore waiting for the ladies to wear.  How fun!

I found Mom with her shake and lunch.  She had no interest in the lunch, and after a couple of sips of the shake she quit.  She wasn’t responsive at all.  When I was leaving, she asked where I was going.  

“I need to run some errands.”

“Oh, are you taking them with you?”

I repeated what I had said.  She gave me that ‘You’re a very naughty boy’ look, then put her head in her hands and went back to sleep.  

Her shake had been snatched up by another resident who then proceeded to gulp it down.  We tried to stop her, but she just looked at us curiously, and smacked her lips as she helped herself to the final gulp, and licked the straw clean.  Oh well….

When I touched her, she felt cool, and she started.  She wouldn’t let me hold her hand, either.  This was quite different from the previous weeks.   

I checked her eating stats - one day she actually ate 10% of a meal (if that means her shake, then wonderful!), the rest were either 0% or 5% - which was the majority of the week.  

After doing some research, this is quite normal.  Her heart is quite strong, so she’s able to continue for a bit longer - unless she rallies again, then we’ll have something interesting to chat about!

The normal time for a person to be able to continue in this manner is 2-3 weeks - less if they’ve a compromised immune system or other ailments such as a weak heart.  

No one is predicting anything, as with Mom, this is a crapshoot (but this is the worst we’ve seen her).  So, stay tuned, and hopefully, I’ll have something more to give you next week.  

Book Review: Elder Rage by Jacqueline Marcell

You know, most books dealing with dementias tend to be technical, somber, memoir-like.  It can be difficult to read many of them because they help us as guides to tend to the needs of the one we have who is afflicted with the disease, be it Alzheimer’s, Vascular, Lewy Body, Parkinson’s, or any of the others.  So I wasn’t sure when I saw the title of this work as to whether or not I really wanted to delve into some of the darker reaches of the disease.  But, it was listed as a best-seller, so I thought I’d give it a shot - after all, it wasn’t that expensive as a kindle book, but then I also added it to my Audible library.  I’m so glad I did.

The author, Jacqueline Marcell (who also performs the Audible book) had been working as a producer, among other titles, in the entertainment industry in Los Angeles.  Her parents, retired, lived in Northern California - somewhere around the Bay Area.  They had a good relationship, and when she found herself out of a job and her parents sent an SOS, she realized she had the time and the means to zoom up north and help them out.  

Wow!  She was unprepared for what was to come.  What must have been a complete nightmare is expressed with a generous amount of humor and tenderness.  What makes it even better is the events touched a nerve with me in the truths that were revealed and dealt with, even if the situations were quite different from mine own.  

There is love and compassion, embarrassment - be it dark and tender (you may understand if you’ve read it) or just outright truthful, but overall Ms. Marcell outlines the story of a child discovering how to handle a medical system that has no interest in involving itself when it should be dragging the bull by its horns.  

She is confronted with how to manage her father's driving?  Honestly, this seems to be one of the more difficult aspects of caring for someone in their own home - especially if they are in denial.  She uses a club on the steering wheel, which is brilliant - I'd not even thought of this! 

Then there are the tales that seem so true - but really aren't.  I had tried to think of ways to get someone in with Mom but knew they'd be kicked to the curb in no time, if they even made it through the front door. 

The hallucinations, the hoarding, the need for control - are all there.  There is even the physical abuse that comes from the frustration.  There is so much in here that is relatable!  Of course, we all have our own spins on what has occurred, but it's so nice to read that someone else is struggling, as well, and making it work!

The denial of the father that anything is wrong becomes quite a problem - it doesn’t help he has an anger management problem that keeps resurfacing and becomes one of the greatest obstacles in Jacqueline’s attempts to get help for both her folks.   Believe me, when I tell you that this anger and denial is real - it happens and pits you between the one(s) you grew up to honor and obey as parent(s) and your need to begin to parent them.  It’s truly heartbreaking, but when you hear this story (completely relatable) and compare it to your own experiences, then you really understand.  

What really caught me was the lack of help from the medical community; they refused to listen and provide any guidance or help.  I can recall Mom’s doctors phoning me for help when I had no idea what was going on.  So, this series of events really touched me.  Had it not been the realization of the final doctor we had telling me Mom needed to be placed in observation I’d have never really had an idea of what to do - the rest of our story fell into place; for Ms. Marcell, though, the story just continues - that is until she is led to the Alzheimer’s Association.

Once she begins working through the information and finds resources she realizes the nightmare may finally be over.  Our journey took another path, but I hear it all the time how lost people are without the right resources or guidance to find out what they can do for their loved ones.  

The appendix of the book is rife with resources (in the Kindle version, these are accessed by tapping the links - I’ve no idea about the print versions), as the author wishes to help others who might be finding themselves in similar plights with no angels in sight.  

While this book may, at times, seem as though it’s a bit too entertaining, stick with it.  Remember, humor is something that is necessitated by the circumstances in order to maintain good mental health for the caregivers and family.  

I would recommend this book as it helps the reader understand more of the struggles more of us contend with than are willing to admit.  As our elders begin to lose their independent abilities they also begin to find elements of life frightening, and they just can’t understand they why or how of the adjustments.  

I’ll be interested to hear how others find this book.  I do know of people who have enjoyed and learnt a great deal from the others I’ve posted in the Recommended Reading section of this blog and hope this one will join the canon.

Elder Rage - or - Take My Father...Please.  Marcell, Jacqueline.  Impressive Press. 2001.

You may also find more of Jacqueline's Resources at: ElderRage.com

Resting Comfortably..OR The Week Ending 05/01/2016

Some would say that this has been another week of the plateau, wherein Mom didn’t make many changes, or slip one way or t’other.  I disagree, but with reservations.  You see, Lazarina has surprised us so many times that I’m not going to put my eggs back into the basket - so to speak.  However, every morning, now, I awaken and make sure my phone is with me - no matter where - I just can’t let go of the idea that we’re coming closer to the book’s final remarks.  

This week Mom ate very little.  There wasn’t a single meal in which she ate more than 20%, and that was a lot!  In fact, according to those who have been observing her this week, it’s been more 5%, and that’s with the shake and yogurt.   So, tell me something different.

She has been staying slightly hydrated, though.  She drinks a little coffee, and, perhaps, one or two glasses of juice - but they keep on her to encourage her to have more - but she declines, politely, and really has no interest.  

Now, one would assume, with her shake she would be getting more - but no - she takes a sip, then puts it down; this, too, means staff has to keep encouraging her, but it’s becoming more discouraging as she simply states, “No thank you.  I don’t want anymore.”

She has been sleeping more and more this week.  Yesterday, she arose for less than an hour and had a little juice (less than a glass) and then went back to bed.  

Even Jean noticed the change!  

Dear Tony,

I missed Connie's conversation today, more with my Norma-visit, as she was so unresponsive.  I got there at 12:20, and saw her sitting at the table with a full plate of lunch in front of her.  She was wearing that pretty blue/gray/green Paisley print shirt with light blue pants.  As usual, she was wearing her support hose; I'm always glad to see that.

I greeted the other ladies at the table: Dorothy, Lucille, two I did not know.  I started to feed Norma what looked like a tuna-veggie dish,with chopped carrots on the side, and rice.  I alternated giving her the protein drink and the main dish; no expression either way, but at least she did eat.  The coffee cup was half full; she had sips of that, holding the cup herself.  She had drunk half the red juice.

I told Norma that Connie went to the seminary tea; that Mary Rose was on the committee, and that daughter Ann was taking her mother.  "Have you ever been to the Portland Gold Club?" I asked; no response there.  After a while, I asked if she would like her coffee heated up a bit. "That would not be bad," she said (I think).

The caregivers were busy helping other ladies, I'm glad I could be there at mealtime.

Norma seemed to be comfortable, but quiet and uninterested in her surroundings.  I painted her fingernails with the pink polish; I held her hands then and continued to hold one at a time.  She accepted that, and at times held one of my hands. I was glad to accept her friendly touch.

I brought the little orange I'd peeled at home. Three weeks ago she ate all the segments;last two times she ate them only when I put them up to her lips. She ate half the chocolate bar.  The other half was still there when I took my leave an hour later.  I told her Connie and I would be back in a few days.

Norma was one sleepy lady after a while, left hand leaning on her face, and appearing to be asleep.

Hardly a word escaped her lips today. She did not seem to be trying to say something, but it's a mystery what goes on in her mind.  I hope she's not feeling frustrated at times, but just calmly going along with things.

Have you seen evidence that she's frustrated or struggling for words to offer her thoughts?  That darn dementia takes away so much; I hope that loss is not painful or even known.

I hope you find her perkier next time you see her.

God bless,

Jean

So, it’s not something only I have seen.  

When I checked in today, I asked the resident manager if he’s noticed anything - his opinion was that Mom was close, but not to place any bets, as we know what she’s done in the past.  

When I entered, Leddy and Iofina were changing Mom and getting her ready to come out.  That lasted only a few minutes, as Mom then went right back to sleep and wasn’t easily roused.  So, we kept her in bed, fully dressed.  

Napping - I had asked her to smile, but she decided to sleep it off...

I put on the soundtrack for Band of Brothers which she told me she liked.  I thought if music were playing it might trigger something.  While I watched her doze, I read from my kindle, silently.  I noticed her hand was shaking uncontrollably, but my touch did nothing to stop it.  

I offered her some juice after I’d opened the curtains, and she took it, stating, “This is refreshing!”  She drank a small amount, and later she had more.  At last, she said she was ready to get up - but when Iofina came in and began the process she tried to change her mind.  

As they lifted her to her Geri Chair, it struck me how frail and disabled she has become.  Her legs sagged as though they were pendulous appendages with no purpose.  Once in the chair, they moved her out into the dining hall.  

Mom finally got up - and this is the smile she managed...She approved this snap.

Mom had her juice, which she had a bit more of, and then they gave her some coffee.  She kept staring off into space.  When I asked what she was looking at she stayed in her trance, or just turned her head and looked at me stoically.  

Finally, it was time for me to take my leave as Mom put her head on her hand and drifted back to sleep.  

There really is no longer much of the woman I have known for 57 years+ (we do need to include womb-time).   As I observed her sleeping, I noticed the chin, strong as her determination; her eyes, questioning and probing; her breath, restful and comfortable.   Her hair had a curl to it - apparently Linn has her magical methods to provide this for her.   She lay straight out - not how I remember from past years when she would curl up - I’ve not seen that for some  time now.  

We all change, but seeing it with your parents or siblings can be something to behold and ponder.

So much to consider and think about.