Friday, December 19, 2014

Unexpected Interruptions

We've had a few unexpected interruptions this week.

First, my household was hit with the flu and a secondary, flu-like virus despite flu vaccines being received earlier this fall.  It knocked us for a bit of a loop and I'm just now able to string multiple sentences together again semi-coherently.

Second, we were treated to an infrequent example of my sister's malicious streak.  She apparently decided to express her displeasure at the respite provider by telling another client of the provider that he shouldn't work with her anymore.  (They attend the same day hab which is now they know each other.)  The other client told the respite provider who contacted Mom.  To say Mom was angry is an understatement.  It is just so wrong to go after someone's livelihood.  Yes, people with Alzheimer's can be that mean.  The mental governors which may stop them from expressing such ugliness are gone.  While the Alzheimer's is a factor, it cannot be used as an excuse and the behavior cannot be tolerated.

Lyn will have no respite care until January at the earliest.  Mom and the respite provider would like to have a conversation to sort things out but both would like to get through the holidays first.  Apologies have been made to the respite provider.  However, the whole episode has revealed a couple of things.

The respite provider had been making plans with Lyn with the expectation that Lyn could properly convey them to Mom.  Lyn cannot retain even one bowling score between the drive from the alley to home which is less than 30 minutes.  The respite provide had not fully understood that Lyn cannot retain any plans for a day or two on her own.  She requires constant reiteration of plans by Mom or others around her.  If Lyn thinks the plan for the day is A and it turns out to be B, she cannot adjust.  There is no flexibility.  All of this has factored in and led to miscommunications and anger.

I don't know if this respite provider will continue to work with Lyn.  I suppose it is a possibility but we'll have to see what comes of the conversation to be had after the New Year.

Monday, December 15, 2014

Of Respite Providers

Being a respite provider has got to be a challenging job.  You are employed to provide occasional care to an individual, allowing their primary care giver to have a break.  The care needs may be a few hours a month to several hours each week.  The schedule may vary widely or may be highly fixed and repetitive.  Usually, the respite provider and the client's primary care giver negotiate what hours are scheduled.

Some respite providers offer their services as a second source of income.  They may be full-time students or even hold a full-time job elsewhere.  Their other commitments may prevent them from being available exactly when the client wishes.   Some respite providers offer their services to more than one client at a time.  When this happens, if two or more of the clients get along and if all are agreeable, the respite provider may coordinate joint outings.

When you're a respite provider, you're to take care of the physical needs of the client and to accommodate the interests and desires of the client so long as the activities do not endanger anyone.   If the client wants to go bowling, then that's what should be on the agenda.  If the client wants to eat out at the same restaurant every single time they go out, then the client should be taken to the same restaurant.

Clients can be a challenge because of the limited set of venues they want to visit, their own communication or emotional limitations.  Clients can be demanding, petulant, excited or dull.  What the client wants to do may be boring to the respite provider.

But, it is not about the respite provider.  It is about the client.

What the respite provider hopefully remembers is that by providing their services, they are actually helping maintain an engagement between the client and the community.  They are giving the primary care provider time to take care of their own appointments, their chores or even giving them time to just soak in a tub of bubbles.  This improves the quality of life for both the client and their primary care provider.

It must be hard for the respite provider to balance all the scheduling needs, the personalities in play and their own personal lives.  I suspect there may be a high rate of burn out and I think we're seeing that come into play with Lyn's current respite provider.  She is the 4th or 5th provider we've worked with at this point.  When each of them started trying to find ways drag Lyn along on their personal errands instead of focusing on what she wanted to do in their time out, we knew their time working with Lyn was coming to a close.

This week, Lyn's respite provider flaked out on their Friday plans and just shrugged it off with an "oops."  On Saturday, instead of taking Lyn bowling, she took Lyn to her son's swim meet.  Instead of going bowling after the swim meet, she took Lyn to a department store where the respite provider returned a dress and tried on shoes.  Lyn came home in tears.  The respite provider didn't even escort Lyn to the door because she had to go pick up another client.

When Mom and I spoke about it on Saturday, I was concerned that Mom would say that she's going to end working with this respite provider and not get another one lined up.  I was afraid she would say something along the lines of "I'll just do it all myself."  Thinking this way is a recognized stage of being a care provider and it is a risky one.  No one can care for an Alzheimer's patient 100% on their own.  For their own sanity, they need some assistance.  Fortunately, Mom didn't express anything like that and agreed that having respite care is as critical for her as it is for Lyn.

So, we'll see what happens over the next week or two.  If things don't change with this respite provider, then we'll transition to another.  I used to worry about Lyn handling the transitions well, but I don't anymore.  She seems to handle it pretty well.

Thursday, December 11, 2014


With increasing frequency, Lyn is surly and argumentative.  While we can explain it as the Alzheimer's, there are days when her behavior indicates that she's still aware of when she's pushing limits or behaving poorly.  Tuesday was one of those days.

She had been aggressive and ugly with Mom before going to day hab.  In the afternoon, she was being exceedingly sweet and solicitous.  She does this when she is trying to make amends for earlier bad behavior.  Mom emailed me to let me know she was risking a diabetic coma from how sugary sweet Lyn was being.  As my dinner cooked, I called to check on them.

As we chatted, the topic of my eldest's winter school concert, caused us to reminisce about a high school choir concert in which I had to wear a pink lame dress with a big bow across the backside.  Mom joked about how I liked the dress and it made her "want to vomit."  The sentence had hardly left her mouth when Lyn started chastising her.

"Mom!  Don't talk like that.  You know we don't say those things.  It is not appropriated."  The tone was strong and disciplinary.  Mom tries to ignore these comments or just replies with a simple "I know." 

"Put her on the phone."  I said and Mom passed Lyn the phone.

"Hi!  How are you?"  Her voice was cheery and sweet.

"I need you to do me a favor, please."  I decided to open with something that would keep her interested.  "Be nice to Mom."  

"I am!"  Her voice was still chipper.

I told her I had heard her and I knew she had gotten onto Mom.  I told her that Mom said "vomit" when she was joking with me and that it was OK for her to say it.  I told her that Mom was not inappropriate and that vomit is not a bad word.  I was polite but firm.  She started to cry and passed me back to Mom before pounding back to her room.  She doesn't know what to do what someone other than Mom corrects her behavior and was weepy the rest of the night.

I apologized to Mom for crossing a line with her.  Mom assured me there was no line crossed.  

I'm not sure that there are rules in Lyn's head about what words are OK to say and what are not.  Sometimes, I know the patterns.  We can anticipate reprimands from her when the topic involves alcohol.  However, there are times when I'm hard pressed to see how what was said broke a social taboo in Lyn's mind.

I know my getting onto her won't make a difference in the long run.  We're working with her on several fronts to try to reduce the amount of behavior challenges she's exhibiting.  To be honest, a crabby attitude, raised voice and bossy nature are relatively low on the challenging behavior spectrum.  She's not violent, for example, but it is obviously tiring Mom.

Wednesday, December 10, 2014

Calculations and Calendars

Lyn has an Advent calendar.  It is one of those that has little chocolates behind perforated card stock boxing.  Each day, Mom reminds her that she can open a door and get the day's piece.  Each day, Lyn counts the open doors.

"1, 2, 3, 4, 5..."

She's been able to count each opening correctly so far.  When she finishes the count, she looses the number and is unable to remember the value which comes next.  It is as if the lack of another opening stops the count in her mind.  She wants the candy and picking any opening won't do for her.  She's found a solution though.

When she looses the count, she goes to check the newspaper.  She knows where to check for the date as Grandma taught her all those years ago.  She looks at the date and finds the corresponding number on the calendar.  Finding a match, she opens the door and gets her reward.

Tuesday, December 9, 2014

Two Santas

Last week, Lyn's respite provider took her to the Festival of Trees.  Lyn was super excited because she encountered two Santas!  This is an amazing thing and one to not be questioned in her book.  One Santa is good.  Two are great!

Monday, December 8, 2014

A Busy Week

Lyn's gearing up for a busy week and I'm not sure how functional she will be come next Monday.  Aside from the regular Monday - Friday day hab adventures, the second half of the week is packed.

Thursday night ushers in the festivities with a Christmas dance at the Convention Center.  It is an annual event for the city's special needs citizens.  On Friday, she has a party at day hab and she's been asked to help sing some of the carols like Feliz Navidad.  When she leaves there, her respite provider has invited her to a second party.  Afterwards, they will go out to dinner and then view some Christmas lights with her respite provider.  On Saturday, she will spend the day with her respite provider.  On Sunday, she and Mom will be attending a matinee performance of the Nutcracker ballet.

Several of the events are happening after the sun sets.  Lyn wants to go to them all and so steps will be taken to help keep her from melting down with anxiety.  Medication helps and Lyn can leave at any time if it becomes too much for her.

When I commented that she'll be exhausted by Monday, she sharply corrected me that she will not because she can handle it.  I'm tired just thinking about it.

Friday, December 5, 2014

We've Never Told Her

We've never told Lyn that I am the one who gets the Santa videos done for her.  The email alerting her to the presence of the video doesn't even come from me.  It comes from the Portable North Pole.  When she tells me about the video each year, I play along like I don't know anything about it.

Today, she started to tell her neighbor about the video from Santa.  When she started her tale, she led with "My sister does this for me."  Mom's jaw dropped.  Lyn started talking about the video and Santa, never mentioning me again.

Sometimes, she leaves me shaking my head.