Thursday, August 21, 2014

Gran Quivira

We braved an hour and a half drive from Albuquerque out to Gran Quivira.  Gran Quivira is the largest of the three ruins which are collectively known as the Salinas Pueblo Missions.  Gran Quivira is also the furthest from Albuquerque.

The day was beautiful and called for us to hit the road.  New Mexico is having its first actual monsoon in years and is as lush as I can ever remember seeing it before.  The grass was tall and there was a profusion of wild flowers.  There were pollinating insects galore.  We were struck by the variety of native bees and thrilled to see hummingbird moths for the first time.  Even the park ranger who has worked there for over 20 years commented that he had never seen so much green there before.

On the hill at Gran Quivira, looking West
 The paths around the site are paved and proved easy for Lyn to manage with the use of her walking stick.  With all the sunlight and open spaces she was comfortable walking around.  As a result, we were able to stroll through the ruins, enjoying the sights.  (Later in the week, she struggled to stay calm in the Museum of Indian Arts and Culture in Santa Fe because the lighting was lower and done for theatrical effect.)

One of the small kivas sits beside some of the housing ruins.
Lyn humored us as we toured the ruins before sitting down for our picnic lunch.  She had wanted to eat first but didn't argue.  As we came down the hill, Lyn took a moment to rest on one of the benches beneath a tree.

As she rested, the park ranger came down the hill on his way back to the guest center and greeted us. My eldest had a question and took the opportunity to ask.  We learned that the piles of rocks in each of the ruin's rooms covered a 50 gallon barrel which is buried in the sand that has been back filled into the rooms.  This is a crude drainage system, the ranger explained.  It is necessary to prevent the walls from being damaged by the ground washing away in heavy rains.  He admitted they were infrequent except for this year.

This exchange took just a couple of minutes and before it was over, Lyn had gotten up and walked determinedly away.  She did not even attempt to interact with the ranger.  That was deeply surprising to Mom and me given how much she likes to be the center of attention.  She had swung her cane up parallel to the ground was was making haste down the hill towards the car, never once looking back to see if we followed.

Wednesday, August 20, 2014

Walking with the Stick

Months ago, I told you that my former step-father had made Lyn a walking stick to help her with her balance issues when she is out and about.  When he had finished it and sent it to her, she refused to show it to me.  All I knew was that she had requested a riot of colors and that she was keeping it in her room to keep it clean.

When it was suggested that she use it on the day trips to Santa Fe or around town with Mom, Lyn refused saying she preferred to hold onto Mom's shoulder.  Mom went so far as to ask my step-father to speak with Lyn and encourage her to use the walking stick.  He did.  He talked about Mom getting older and that Mom might not be able to handle Lyn hanging onto her shoulder.  He asked Lyn to promise to use it.  She begrudgingly did and he thought the issue was solved.  It wasn't.  She stormed out of the room angry and still refused to use the cane.

Mom and I talked about this the night that my family arrived for our visit.  We decided to apply a bit of peer pressure and enlisted the help of my husband to convince Lyn to use the stick.  We assured her it could be cleaned.  It was made for use, after all.  We told her Mom may be too distracted corralling my little one that her shoulder may not be available.  We also pointed out that the paths would be uneven and the stick would help her.  Lyn eventually gave in and agreed to take it with us to Tinkertown the next morning.

We did not exaggerate or lie to her.  As you can see from this picture of Tinkertown's entrance, the place is not your standard or well laid-out museum.

It has narrow paths in the building.  The floors are uneven and patched used license plates.  The lighting is poor and the construction is a hodgepodge of pieces cobbled together.

The cane was perfect.  She was able to use it without a problem and she managed without once having to reach for Mom's shoulder.  She didn't always let it touch the ground, sometimes carrying it a couple of inches above the ground.  However, it was there when she needed it.

It is a beautiful cane made of hand turned dark wood with a tight grain.  The handle is carved to look like a toucan's head.  My step-father did a very good job on the cane.  We kept insisting that Lyn use it with each trip we took during our week.  Hopefully, she'll start to use it more.

Tuesday, August 19, 2014

Moving Back Home

Lyn is currently unaware that some changes are about to happen.  They're going to be hard on her, but we'll help her get through them.

Their lovely neighbor is putting her house up for sale at the end of the month and moving back to her home state of Texas to be closer to her family.  She's been exceptionally kind to Lyn ever since she moved into the neighborhood and Lyn often likes to invite the neighbor to join them if they go out to eat or drive up to Santa Fe.

Lyn has been in the disability waiver program for over ten years now.  In that time, she's had only one case manager.  Lyn's case manager has been an important part of Lyn's care ever since Lyn was assigned to her case load.  Lyn has seen her on a monthly basis ever since.  Her case manager has decided to return to her home state of Montana where her family still resides.  She has already sold her house and her move is just a few weeks away.

We have not told Lyn yet of these changes.  It will make it harder on her if she knows for longer.  She will worry and cry about it each day between now and when the events happen.  So, Lyn will be told when the For Sale sign is placed on the neighbor's house and at the team's next monthly meeting.  Neither lady will leave without saying "Good bye."  There is no sneaking away.  We're just trying to delay the inevitable tears a bit.

A new case manager has already been identified for Lyn.  The new case manager is very experienced in this work and was chosen specifically because her own father is currently an Alzheimer's patient.  The hope is that her personal experience with Alzheimer's will provide her with insight into what is happening with Lyn.

So far, Lyn has handled the transition to new respite providers pretty well.  Hopefully, she'll still have some resiliency in dealing with these pending changes.  

Monday, August 18, 2014

Introducing Herself

Lyn is completely unafraid to introduce herself to someone, particularly if she perceives them to be a person of authority.  She'll stop police officers and firemen to thank them for their service.  When we were with her last week, we visited a local restaurant for breakfast and two officers were gracious recipients of a few minutes of her attention as we waited to be seated.

On Saturday, Mom and Lyn had to run some errands and stopped at a local pizza place for a couple of slices while they were out.  It was early and they were the only customers when they entered.  As they waited for their order to be delivered to the table, another party entered and sat down.  It was Governor Susana Martinez, two aids and a State police officer.  Lyn recognized her and said "I saw her at the mall about a month back."  Mom explained who was at the table.  Lyn expressed a desire to thank the Governor for her service.

Mom asked the waitress if she could get permission for Lyn to go say "Hello."  The waitress was very helpful.  She made the inquiry with the Governor and escorted Lyn over when the Governor quickly replied to "Bring her over."  Lyn was able to introduce herself and chat with the Governor for a couple of minutes.  The Governor gave her a hug and Lyn came back smiling from ear to ear.  Upon returning to the table, Lyn announced to Mom "I told her I am special and have Alzheimer's so she hugged me!"

The hug doesn't surprise me.  Governor Martinez was not just greeting a constituent on Saturday.  I suspect she quickly understood Lyn.  Governor Martinez has an older sister, Lettie, who has special needs.  Lettie lives with the Governor who has been an active part of her care since their childhood.  Lettie has competed in Special Olympics and Governor Martinez has cheered her on as I have for Lyn.

Friday, August 15, 2014

Yearly Informal

Each summer visit with my sister now includes a question that Mom and I discuss.  Sometimes my husband provides feedback as well.  The question is "What are the changes you notice from last year's visit?"  This question is actually hard to answer for me and Mom because we're keeping watch of the changes happening with Lyn.  My husband is a bit more removed from Lyn's care which allows  him to notice things that we tend to forget to call out since we've been noting them all along.

This year has brought to our attention that Lyn's behavior and her responses are more juvenile.  For example, she frequently seeks affirmation or praise for an action which should not require it.  When she gets a high score on her electronic bowling game, she would ask us to guess her score and then brag about it.  When we went bowling at the alley, she continued talking about how she was going to beat me while expecting me to cheer each of her efforts.  I know she's competitive and a bit spoiled, but she was hateful towards me in the alley and I received numerous sidelong glares.  She would call out to me as I would approach the lane with my ball but get ugly if I said anything to her or if I tried to take a picture.  She pushed it enough that I turned to her at one point and quietly said "Enough" over the ball in my hands.

Jealousy and paranoia are a daily occurrence even when the day is focused around her.  At one point on Thursday, she demanded that Mom tell her what Mom and I had been speaking of so that Lyn could make sure it was acceptable to her.  Lyn had been putting on a bit of a show at the zoo of how difficult it was to walk and how much she needed to sit on each available bench that I had expressed concern for her ability to bowl.  When Lyn heard this, she got angry at me for doubting her.

Lyn is isolating herself more.  Each day, she would spend and hour or more in her bedroom by herself.  It was deliberate and, I think, her way of not getting over stimulated or jealous of my kids.  She got mad if one of them came to her room to check on her and went so far as to close her door "to keep them out."  The keeping them out was a sign of her paranoia.  My kids are old enough to understand when someone wants to be alone and to follow directions to stay out of Aunt Lyn's room. So, they weren't offended.  They know what is happening to her and are very good about not taking her actions personally.

Last week, I wondered if Lyn would remember my little one's name while we were here under the same roof.  She does not.  She has not stated my child's name once to the recollection of Mom, my husband or me.  She would call the child "Goofy" or "Snicklefritz" instead.  Fortunately, my child never corrected her or made her feel bad about this.  The reality is, however, that the name is gone from her.

Lyn's hoarding money.  It is all small denominations but that's really all she has available to her.  Every coin is saved.  When she has dollars in her purse, she says she wants to spend them, but then only wants to spend one or two.  When we went to the zoo, Mom had Lyn pay her own entrance fee.  It was $9 and Lyn pulled a stack of ones from her purse.  She peeled off $2 and handed it to Mom.  Mom prompted her for more 4 more times and Lyn got madder with each request.  "I don't want to spend this much!  I want to save it!"  Mom had to remind her that the zoo costs that much and it was Lyn's responsibility to pay her own fee.

The week with Lyn has given us an opportunity to see and experience some of the challenges surrounding her care.  It has allowed us to see her changes and the stresses on Mom.  Our yearly, informal assessment indicates that Lyn's dementia is progressing which is no surprise to us, really.  Unfortunately, it is hard to anticipate where she will be in a year.

Thursday, August 14, 2014

Behavioral Assessment

Lyn recently underwent a behavioral assessment to determine if behavioral therapy would be of assistance to her.  The assessment was sent to Mom last week and we reviewed it together when I arrived.  There were a number of errors and some concerning statements which prompted us to ask for some time with the therapist to review the assessment.

The therapist had some time early yesterday morning.  We were able to meet in person and go over each item.  The errors were easy to correct and quickly resolved.  For example, it said "support staff" instead of "mother" and it referenced "both biological parents" having provided care for Lyn's life.  Lyn hasn't seen our father since December of 1978 and the reference to him has been removed from the assessment.

The concerning statements ended up just needing explanations.  At two points in the assessment, we read "Socially destructive.  At risk of self-harm."  We read that as meaning that Lyn was socially destructive and that she could hurt herself physically.  We were glad to learn that we were incorrect.  The therapist explained that Lyn's dementia causes paranoia and anxiety which is socially destructive because Lyn no longer works to maintain casual relationships.  Her social circle is getting smaller because she's no longer cognitively able to engage in social small talk.  If another day hab client asks a question and Lyn thinks the question is about her, she withdrawls from social interactions with the other client as a result of her paranoia which is a direct result of the Alzheimer's.

This plays into the "At risk of self-harm" statement.  Lyn is not at risk of cutting or other forms of physical self-harm.  In this context, the reduction of social interactions and the increase of social isolation is viewed as harmful to the individual.  These statements are considered standard for these assessments though they were very concerning to our initial reading of them.

The time and explanation the therapist provided was greatly appreciated.  She helped clarify our understanding of her assessment of Lyn.  The interaction was educational, interesting and well received.  She took a time to also set the context for the service plan that she will write up.  It will be more targeted to the day hab staff and Lyn's respite provider.  The therapist indicated she was happy to review the assessment with us and to answer our questions because she often wonders if her assessments are read in detail by those who are engaged in the care of her clients.  She often receives no feedback at all.

So, if you end up engaging the services of a behavioral therapist to help mitigate the anxiety of an individual with dementia, please read the assessment and ask about anything you don't understand.      

Wednesday, August 13, 2014

A Month Ago

Lyn took some time yesterday evening to look through some of her photo albums.  She wanted to show me a picture of her current boyfriend.

As she was flipping from page to page, she announced that she didn't want some of the pictures anymore.  They were pictures of her Special Olympics team celebrating their ribbons and medals after competition years ago.  I offered to take the pictures for the blog if she didn't want them anymore.  When she set them on the table next to me, she explained that they were taken "way more than a month ago."

The "month ago" phrase has popped up a lot during our visit.  Lyn no longer has the ability to remember how long ago an event occurred.  She resorts to saying "about a month ago" or "more than a month ago" when she's unsure of the timing.  This was highlighted for us in an unexpected way on the way home from dinner Monday night.

As we drove home, she had finished a repitition of her drive home mantra when she stated "That woman who taught me to tie my shoes about a month back... I don't remember her name."  Mom responded with "You called her Nana."  I could tell from Mom's voice that she was startled and I whispered to her "How old was she then?"

Lyn was remembering a time when she was 8 years old but to her it was only a month ago.