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.    

The Week Ending 04/24/2016

This week Mom kept a holding pattern - holding back from staying awake, holding back from eating - holding back from participation.  In other words, she was just there.  She was in a good and cooperative mood but just wasn’t interested in much else than sleep.

The most she had eaten this week was about 80% of her dinner one night - but that was more of a memorable occasion, since she really didn’t eat more than 20% of anything since then, and before that she’d eaten nearly nothing.  Maybe this is how she creates an appetite?  I doubt it.  

For me, it was tough that I couldn’t share that her #2 son, Tom, had died (he would argue that saying “Passed” made no sense - people die - they don’t pass) the previous weekend.  But, she probably wouldn’t be able to process it, and it would have done nothing but upset her (just as it upsets her when someone mentions that Dad or her mom have died).  So, in her condition, it was logical that she not attend the funeral in Seattle (that and taking her out would have been high holy Hell for her! Not to mention me! Her stress levels would have been extreme if she could stay awake that long.

And so, her week went on - staff needing to convince her to rise from her bed and slumbers and then trying to get her to eat.  

On Tuesday, she was given her shake, but then would take a little sip and put it down.  The staff would hand it back to her, and she’d sip and put it down.  I mean, she’d sip it - not her usual long drag of ingestion.  This went on until she’d finished - Leddy was worried that otherwise, she’d eat nothing!  And right she was.

Wednesday, Connie, and Jean came for a ribald visit (I’m exaggerating, just a tad here - I doubt either of them or Mom, could really be bawdy at this time).  Here is their account:

Dear Tony,

We checked in at St.Anthony's at 12:05 today. Lunch was being served, with residents at different stages of eating their meal.  Norma  was at the head of the table, not seeming to pay attention to her "subjects" along both sides of the table.  She was wearing a bright blue shirt with white on the top part.

We greeted the other ladies at the table: the two Lucilles, Elizabeth, and Dorothy.  

Connie had a new Wall Street Journal for Norma to peruse. She held it on her lap, we hoped to read later.

We remarked on the beautiful, warm day, and Jean said maybe we could go out to the gazebo.  Connie picked up on that, reminding Norma what fun we had playing Scrabble there.Norma showed no interest in what we said then, or for most of our time there.

A dish of soup was in front of Norma, so Jean picked up a spoon and offered a bite...no interest there.  A second try...same thing.  Soon there was a full plate of white fish, cut up, baby carrots, a few pieces of potato, and a generous serving of peas.  Apparently she had drunk the glass of juice and a cup of coffee.

It's always a challenge for us to be able to get some food into Norma.  She did take nearly half the fish, a few carrots, no peas, no potatoes.  No more for her. Jean watched with admiration how the caregivers help and feed the ladies who need help.

Then Elsa served green jello with a blob of whipped cream.  Elizabeth, to the  left, had polished off her meal with barely a crumb left.  A few minutes later, we saw her drinking the jello, which was melted by the warm sun from the windows above.  Thinking what a good idea that was, Jean asked Norma if she wanted to drink her jello--nope, but she did a few bites of the unmelted jello.

Jean told her friends that she was going to invite her sister Kathleen to visit.  "Would you like to see Kathleen?" Jean asked. "Yes," was the prompt, very quiet answer.

When anymore eating seemed to be a lost cause, Jean brought out little oranges for the three of us. she separated Norma's on a paper towel, with ours the same way.  Last time we had oranges she ate all of hers; no help needed.

This time, she did not seem to want any, but when Jean brought each piece to her mouth,she ate all of it. That is, all except for the piece Elizabeth helped herself to. She was quick for an old lady!

Maybe Mom would like some more coffee. We offered it, asking if we should get some for her.  That little, tiny not-Norma voice answered, "Probably."  Elsa brought out the coffee creamer to add to Norma's coffee, and Jean poured a cup for Connie.  Most of our time with her, Norma had her eyes closed.  Yet she heard us.

Norma was quite unresponsive most of our time there--1.25 hours.  She seemed very sleepy. We wondered if she did not have a decent night's sleep.  When her head dropped down, we decided it was time for us to leave. We promised to be back "in a few days."

It was as good a visit as any we have these days.  We plan to be at St.A's as long as Norma is.  She did seem comfortable in her wheelchair; no pain mentioned.

Thursday and Friday Mom was difficult to get out of bed.  In fact, on Friday she didn’t budge.  I asked if they checked for breathing, and they said it was unnecessary as it was obvious she was.  But they opened the windows, called her name, made all sorts of sounds - and yet she remained sleeping.   This sounded nearly a repeat of two months prior.  However, soon she awakened and was out with the rest of them, staring at her lunch.  

Saturday she was better, but it still was rather late when they were able to roust her from bed.  And, she ate very little.

Today, Sunday, she appeared the same, but then was ready to pounce on the day.  I arrived less than an hour later - in fact, I was there in under 30 minutes - but she was asleep.   She’d hardly touched her plate, if at all.  She wasn’t interested in the yogurt and told me she just didn’t feel right.  When probed, she just stared at me as though I were a mirror.  

Did she know who I was?  Well, I asked her, and then she closed her eyes and dropped off to snoozing.  

Her voice was very low and quiet today.  Her sentences made sense.  She liked the flowers I brought her and finally agreed to smell them.  

She told me she hadn’t read the paper nor seen it, and I directed her attention in front of her where it was on the table.  She took a glance and then went back to slumbering.  

I told her my brothers all sent their love and she, again, just stared, then went back to sleep.  

At last, I told her I loved her and I’d see her soon.  Her response was, “Maybe”.  Was this an omen?  I doubt it.  However, it seems she has begun to cough again, and it’s increasing, so I’m told.  This could be pneumonia again, and it could be asperative, as well, which could be awful - painful and possibly fatal.  We’ll keep a close eye on that - hospice has been informed.  

So, thank you all for your prayers and thoughts.  While her life hasn’t been riddled with all the twists and turns of the past two years (which I have to admit I’m bittersweet about not having) she is still looking a peck onery.  But, we’ll see how she does in the ensuing week.

Have a good one.

The Week Ending 04/17/2016

This week entered what Mom used to call, “The Bad Zone.”   This was the week in which both her parents died, among other events-Mom believed to have been negative.  For the most part, she’d be a little more uptight (if that was possible) for the duration of the 10th - 18th of April.  I had believed something would occur to her, during this time, but it wasn’t with her.

Monday through Friday, Mom ate - but still sparsely; however there were times she’d eat nearly 50% of a meal, but then very little of anything else.   She wasn’t very participatory, rather she preferred to “rest her eyes”.  

Mom smiles from her slumbers

She didn’t seem to want to do much of anything.  However, as is typical, she was quite tickled by the visit of her friends, Connie, and Jean:

Hi, Tony,

We had a good long visit yesterday.  Norma was finishing her lunch, with just a piece of cake left.

The coffee cup was empty; no interest in a refill.

She looked up at us with interest and greeted us.  Other ladies were finishing their meals, and Norma just did not pay attention to them. She had a good combo on, the purple and black striped shirt with the purple-edged light jacket, and gray pants.  We remarked on her pretty, wavy hair--probably just washed.  As usual, we spoke of the weather, and of the good old days when we played Scrabble in the gazebo.  We never see anyone in "our" gazebo; maybe warmer weather will change that.

Jean had brought a small peeled orange for each of us,and separated one in front of Norma.  During our time there she did eat all of it, even though she did not seem interested.  But we realize she probably does not exclaim at like or dislike for  many foods these days.  Her drink looked different; was there pistachio ice cream mixed in?  She drinks half of it during our visit, with no interest in more.

Connie told us about a birthday party at her house for 11-year-old grandson.

Norma usually responds to what we say.  Her voice is so quiet now; we listen carefully. Such a loud cry (pun, yes) from her usual strong voice.  But she does not miss a thing if we say something that deserves to be corrected. Jean tried, "I did really good with it," and she said gently, "well." No lecture, just a motherly correction.

Later, Jean was telling my friends that she was worried about my sister, Kathleen,who seems to have sleep apenea. (Another test.)  The teacher said quietly, "apnea."   Obviously, she's paying attention to what we say.

Dorothy (another resident) was at the table with us, carrying her lifelike baby with such care and affection that we all (two of us) joined her with asking about Baby, was she asleep,etc.  When Dorothy left us, she carefully kissed each of us on the forehead or cheek--little baby kisses.  Norma did not react to the kisses.  How gentle she has become! Connie and Jean both thanked Dorothy.  We were happy for her, with her little one to care for.

Morina came in from North Cottage, sat a while with us.

Noelle came in and we visited with her, as she asked Norma how she was.  We don't remember Norma's responses, except that she did not say she'd had back pain lately. We told her she had not complained of it during our visit.

We said it was time for us to leave.  We left Noelle with Norma.

The times they are a’changing.

God bless,

Jean

While it is true, that Mom still has many mental capabilities they are still fading into the nether regions.  

Saturday, Mom stayed in bed and ate nary a bite, but for her shake, which she savors.  

Sunday, Mom, again, was in bed as I came in.  She was sound asleep.  I wasn’t able to rouse her readily, so I went and checked on her records.   

This morning, she had had some juice, her meds, and that was it.  She wasn’t hungry.  When she awoke, she told me she was quite happy in bed, and couldn’t think of why she should be up.  I asked if she was that sleepy, and she replied, “I’m not asleep, you are!”  I had to chuckle.  

I was not able to tell her that her second son, Tom, had passed away the night before.  It was a shock.  However, there would be no purpose in delivering the news to her, but to upset her, and even then she mightn’t remember.  Better to allow him to surprise her when she walks through those pearly gates and have him stand there, smiling, reach out to her and kiss her while welcoming her.  He would like to be able to do that - he enjoyed surprising her that way.  

My brother, Tom, circa 1961/2

So, as she continues on her path, eating less and less (who knows? Tomorrow she could pull one of her rebounds and begin devouring anything in sight!) and sleeping more and more, we mourn the loss of our brother, her son, and we tend to her needs.  

God Bless.

Someone You Know Has Dementia - What Can You Do?

Last summer, I read a book that mirrored so many situations that reflected a family dealing with a loved one’s struggle with dementia, We Are Not Ourselves by Matthew Thomas.  As the character begins his descent into another realm of reality, his friends begin to disappear - one finally stating, “We just don’t know what to do, or say, or how to deal with the situation (I am paraphrasing).  This is quite typical.  In fact, you would begin to believe, that with the research and all the knowledge that we now know about dementia people might be able to better cope or find ways to help the families with a loved one in this predicament.

Social withdrawal is one of the signs that a caregiver is experiencing stress.  Why would they withdraw?  Well, to be honest, it can be incredibly consuming to take care of, not only the household chores, but helping and working with someone who has no idea of what they or their carer is actually going through.  When people decide they’re going to be “paying their respects” and visit, those with a patient in the home could find this hopelessly stressful - now they need to make sure the house is clean, have refreshments, and “pretend” all is well - it’s just natural.  

When asked if the carer is free to do something, there may not be a right time - there may be no one or no service possible to provide a few hours of respite in order to slip away.  It can be quite difficult, and the guilt is overwhelming.  I know of a man whose wife is suffering from LBD and he tries to take her out to the movies at least twice a week, then they go for ice cream.  However, aside from her ability to be with him, he also needs to contend with her running out of the house - sometimes while he’s trying to bathe!  I’m sure there’s nothing more telling than an afflicted person trying to run down the street with an older man in a towel chasing her.  He can laugh about it, but the chuckles soon turn to tears - he’s so frustrated.  His children are trying their best to help him - and it’s been more lately, but still - the stress is tremendous.  

Many of those carers are also sleep deprived.  While they may not sleep in the same rooms, or bed, they awaken to the alarms, to the loved one performing acts (slamming doors with OCD behaviours, relieving themselves in improper places, hurting themselves in the dark, or a myriad of other activities that we can only imagine) that keep them awake, or that they need to help the patient to ensure safety and an ability to sleep, again.  

Many people state that there are many who say, “Let us know if there’s anything we can do!”  Well, that’s fine, but if the carer calls you and you put them off, what do your words mean?  How can you support them?   I’ve made a list of ideas that could actually make the carer happy that you came over!

1. Offer to help clean the house at no charge and do some shopping for them.
2. Locate a service/trusted friend to care for the patient while you go out to listen and to help them enjoy a bit of freedom.
3. Offer to care for the patient and help them have a massage as a gift - believe me, this might be the ultimate gift.
4. Come over with refreshments and listen.  Find out what they truly need/want.
5. Offer to drive to appointments both the carer and the patient.
6. Yard work?  Handyman chores?  Chances are there are projects that haven’t been addressed because of their situation.

In other words, find ways to support them that really count.  

Be a friend, not a ghost - there are enough in their lives at this point.  

Do NOT offer advice unless prompted, then be very diplomatic!

Below, I have placed the list of Rewards & Challenges from HelpGuide.com:

Caring for Someone with Alzheimer’s (or Another form of Dementia)
Challenges:	Rewards:
Overwhelming emotions as capabilities lessen	Bonds deepen through care, companionship, and service
Fatigue and exhaustion as caregiving demands increase	Problem solving and relationship skills grow through experience
Isolation and loneliness as independence disappears	New relationships form through education and support
Financial and work complications as costs rise and resources are challenged	Unexpected rewards develop through compassion and acceptance

I have also copied, from the same site, the 10 Signs of Caregiver Stress from the Alzheimer’s Association:

10 Signs of Caregiver Stress

If you experience any of these signs of stress on a regular basis, make time to talk to your doctor.

1. Denial about the disease and its effect on the person who has been diagnosed. "I know Mom is going to get better."

2. Anger at the person with Alzheimer's, anger that no cure exists, or anger that people don't understand what's happening. "If he asks me that one more time I'll scream!"

3. Social withdrawal from friends and activities that once brought pleasure. "I don't care about getting together with the neighbors anymore."

4. Anxiety about the future. "What happens when he needs more care than I can provide?"

5. Depression that begins to break your spirit and affects your ability to cope. "I don't care anymore."

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. "I'm too tired for this."

7. Sleeplessness caused by a never-ending list of concerns. "What if she wanders out of the house or falls and hurts herself?"

8. Irritability that leads to moodiness and triggers negative responses and actions. "Leave me alone!"

9. Lack of concentration that makes it difficult to perform familiar tasks. "I was so busy, I forgot we had an appointment."

10. Health problems that begin to take a mental and physical toll. "I can't remember the last time I felt good."

Source: Alzheimer's Association

So, please be patient with these people.  You might find yourself feeling uncomfortable, but you also might earn some wings if you reach out and find out how you might impact them in a positive way - that they need, rather than what you believe they need.

Listen - that’s the key.