Tuesday, January 31, 2017

How "Not Appropriated"?

How "not appropriated" was the calendar?

So glad you asked!

This is the face of disapproval that we get from her.


Monday, January 30, 2017

STILL Not Appropriated

Saturday was hysterical.

Lyn knew Mom wanted to purchase a 2017 calendar and was determined to stop it from happening.  Lyn told me she "needed to get onto Mom."  She started before Mom was even out of bed and kept it up until the end of the day.  I asked if Lyn "needed or wanted" to correct Mom.  Lyn wasn't sure but she did indicate she enjoyed getting onto Mom about the calendar.

Mom felt it was her civic duty to purchase the calendar to support a local effort to find animals homes. Lyn feels very strongly that the desired calendar titled "Albuquerque Firefighter Pet Calendar" was not appropriated (Lyn's word) because so many of the firefighters pictured in the calendar are shirtless.

Mom has looked over the calendar.  She's offered to take down the 2017 calendar given to her by a friend who does a lot of wildlife photography.  Lyn objects to that idea.

Mom has offered to send me the calendar because I don't have a 2017 calendar much less one with firefighters, dogs and cats.  There's even a picture with a bunny.  I like this idea but Lyn objects.  She objects because she says my husband should not be forced to look at this calendar.  She offered to send me a calendar in her room that doesn't have shirtless men.

I offered to send the calendar to a friend in Italy.  She's a single lady who appreciates the efforts of firefighters.  Because she's single, there's no concern over a husband being forced to look at the calendar.  Lyn couldn't argue with that point but maintained that the calendar was not appropriate for anyone.

Mom and I spent the majority of the conversation laughing as Lyn rolled her eyes at us, gave us withering looks, and called our sensibilities into question.  She strongly maintains that she's the only one with a well-formed thought in her head and the calendar purchase proves it.

Thursday, January 26, 2017

Alzheimer's on PBS

Did you catch the documentary "Alzheimer's: Every Minute Counts" on PBS last night?  It sounds the alarm of the impact Alzheimer's is about to have on the US.  With a new case of Alzheimer's diagnosed every minute in the US and every 4 seconds world-wide, the approaching tsunami of patients will overwhelm our medical resources.

A successful treatment is desperately needed.  It is needed to help ease the anxiety and confusion of the patients with Alzheimer's.  It is needed to help ease the burden on the care givers.  It is needed to help ease the drain on the economy.  From the individual level to world-wide, treatment is needed.

If you did not catch it, you can at least view some of the clips which have been made available.  Hopefully, the documentary will be aired again soon or made available online in its entirety.

In the meantime, you can help fund research to find a cure.  I am.  My husband and I have established a monthly deduction to go to Alzheimer's research.  It's not a lot, but over the course of the year, it will add up.  Combined with other contributions, it can have a big impact.

If you're considering supporting Alzheimer's research, here are some links to organizations you can consider.  Do some research and choose the organization(s) which make you most comfortable.

Alzheimer's Association
Cure Alzheimer's Fund

Here's the list of Alzheimer's charities rated on Charity Navigator.

Wednesday, January 25, 2017

Insufferable

Lyn still bowls regularly and her scores are still consistent.  She'll usually have a good start with a game in the 130's followed by a game of 100 to 110 points.  If she plays a third game, she rarely tops 100.  Her low scores are more than me on a good day.  Then again, she bowls weekly and I bowl annually.

Last week, she went bowling and played two games.  Her first was 130 (consistent).  Her second was 198!!  I think that's one of the best scores she's ever done.

She had Mom call our Uncle to challenge him to a competition.  Mom offered to buy him a beer at the bowling alley.  He says he'll need two.

Lyn had Mom update me and later gave me explicit instructions that my husband needs to start practicing.  She intends to beat us all soundly when we visit this summer.

She will too.

Tuesday, January 24, 2017

A&E Investigation

The A&E report incident is currently under investigation.  The investigator came out to the house and spoke to Mom and Lyn.

Prior to the appointment, Mom and Lyn's team reminded Lyn that it is OK if she couldn't remember what happened.  They told her to just tell the investigator whatever she could.   When the investigator was there, Mom introduced him and then transitioned herself out of the conversation.  She left the room so they could speak in private.

Prior to Mom's departure, the investigator assured Lyn that there was no right or wrong answer and the he wanted to know Lyn's thoughts.  After he was done speaking with Lyn, he spoke for a few minutes with Mom.  Mom had printouts from a conversation she had with the respite care provider which happened 5 minutes after the incident.  Mom had asked what had happened.  The respite provider gave her account of the incident.

We know the respite provider is one of the individuals to be interviewed by the investigator.  Lyn's community access provider may also be interviewed.

I will let you know when we have the findings from the investigator.

Wednesday, January 18, 2017

In Purple

A package from Mom and Lyn arrived yesterday.  In addition to some delicious baked goods (always a welcome gift), there was one of Lyn's recent paintings.

At some point, while in a craft shop, she spotted a wooden cross and decided I needed it.  She painted it in a couple of shades of purple before drizzling the metallic puff paint all over it.



She's already asking where I will hang it.  I honestly answered that I don't know where it will hang.  It's not my style.  She's been insistent that I need a cross and we have no idea why.

Mom has suggested that Lyn paint me a picture.  Lyn offered to sell me one of her paintings and was quite put out when Mom told her that I should get one for free.  She's not having it.  If I want a painting other than the cross, I'll have to pay.  I don't blame her approach and got a good laugh at how openly mercenary she can be.

Tuesday, January 17, 2017

Who Takes the Blame

When we were kids, Mom used to ask if there were a couple of additional children living in our house named "I don't know" and "It wasn't me!"  These were the most common answers we gave when she asked who was responsible for whatever misdeed was being investigated.  We, being normal kids, actively looked for ways to get out of trouble.

These days, "I don't know" has been replaced by "I don't remember" and "It wasn't me" has been replaced by Nikka.

Alzheimer's is an interesting disease.  Lyn knows that her brain isn't working right.  She's described it as "jumping all over the place" or "flipping inside out."  She seems to recognize that her anxiety and shadowing of Mom is abnormal.  She's shadowed before but it has become nearly constant ever since the incident just after Christmas.  She is intent on keeping Mom or her community access provider in sight at all times.  With Mom, this now means that Lyn actively interjects herself into the act of going to the restroom.

If you ask Lyn what she needs, "I don't remember" is now her most common response.  Lyn no longer remembers details about anything.  She does remember feelings, particularly strong ones.  Unfortunately, her strongest emotions at this point are in the fear and anxiety category which cycles into her desire to shadow.  She's looking for assurance that everything's OK.  She knows enough that she doesn't trust her own assessments and is looking to others for added assurance.

If she proactively offers a reason for her shadowing, the chances are very high that she'll blame Nikka.  Nikka wonders where Mom is and when she'll be done in the restroom.  Nikka wonders what Mom is doing in the kitchen or who is on the phone or who wrote what in an email.  Lyn offers Nikka up as a potentially believable excuse.

Fortunately, Nikka is one of the most patient beings I have met.  She stands there and wags her tail as if every word Lyn says is 100% true.  Nikka's not one to correct Lyn.  Both Nikka and Mom know the truth and that correcting Lyn will just hurt Lyn's feelings.  So, with a pat on the head, Mom lets Nikka know that she's in on their complicity in helping Lyn manage her daily anxiety.

Monday, January 16, 2017

Safety Plan

The State jumped on the A&E Report within 24 hours of receiving it and has already reached out to start the investigation process.

One of the things they have requested is that the agency where the incident occurred provide a safety plan for keeping Lyn safe.  In this case, the plan should be exceptionally simple.  The individual who cornered Lyn should have ZERO contact with Lyn.  If Lyn is there, that person may have to go to her office and close her door or perhaps leave.  That person should not speak to or in any way to engage with her.

The inquiry by the State has caused a couple of people to get all aflutter.  There have been calls seeking more information by individuals who are concerned (read: being nosey) but who are not involved with the case.  These callers are being directed to Lyn's case manager.  If they need to be brought up to speed, it is the case manager's job to do so; not Mom's.  Once the report was filed, the who process is out of Mom's hands.

Wednesday, January 11, 2017

A&E Report

Last week was a bad week for Lyn.

She has been expressing an increasing desire to no longer work with the respite care provider who has worked with her for about three years now.  Lyn hasn't been happy with doing activities that the care provider wanted to do instead of doing the things she wants to do such as bowling.  Mom and I have been talking about it and wanting to keep an eye on things, knowing that we would have to consider reducing the hours or even ending the work with the respite care provider.

Lyn's Alzheimer's makes it very difficult for her to exercise discretion.  She mentioned her feelings to an employee at day hab.  That employee broke protocol and disclosed Lyn's feelings to the respite care provider.  The day hab employee was wrong to tell the respite care provider.  First, they are not colleagues.  Second, any change in hours or service is between the client, the care provider, and the case manager.

Lyn's community access provider needed to drop off some paperwork at the location where the respite care provider works.  She and Lyn stopped by on their way to their activity.  The respite care provider called Lyn into her office and partially closed the door, starting a conversation which seemed benign by asking how was Christmas.  A couple of sentences later, she closed the door fully, cutting Lyn off from her community access provider so she could ask Lyn why Lyn had a problem with her.  Lyn panicked, thinking she had done something wrong and feeling completely intimidated and afraid even though she was not being physically harmed or yelled at.  The conversation was brief but Lyn came out of the room in tears, shaking, and asking to go home.  The community access provider reported the incident and alerted Mom.

It took at least 48 hours before Lyn began to calm down.  We now see a new behavior from her.  When she's shut down, she stands stock still and won't make eye contact.  That lasted for those two days.  After that, she started shadowing Mom to the point of not allowing Mom to go to the restroom alone.  Poor Nikka has been blamed for everything including needing to know where Mom is at every moment.  For several days, Lyn's sleeping was greatly disturbed and her general emotional outlook has been very down.  She doesn't know how to process the intimidation she felt.

Mom reported the incident to Lyn's case manager and now an A&E (Abuse and Exploitation) report is being submitted to the State.  The report should have been made the day after the incident but Mom was still dealing with the fall out and trying to piece together information, including from the respite care provider.

Lyn will no longer work with this respite provider who will not be allowed additional contact with Lyn.  We've done a tremendous amount of trying to assure Lyn that she did nothing wrong.  The person in the wrong was the respite provider.  She should not have isolated or questioned Lyn.  She knows Lyn's diagnosis and even though she's not accepted the scope of the changes, she violated a number of policies in how she handled the situation.  She should have directed her questions to Mom.  She should not have removed Lyn from her community access provider.  She acted in her capacity as a service coordinator and abused that role as well.

So, the State will now investigate.  They will speak with the two providers, Mom, and Lyn.  They must speak with Lyn without Mom so that they are assured that Mom is not leading Lyn to her responses.  If the State determines the A&E report to be unfounded, it will drop the investigation.  If it finds the report to be substantiated, then the person could be sent for additional training or even face termination from employment.

It's deeply troubling to see the impact and trauma this incident has caused Lyn.  The respite provider has changed her story a couple of times, in writing even, to make it sound like she's been the victim of Lyn casting aspersions against her.  She even approached the community access provider who was with a different client at the time to try to discuss the incident and did so in a public venue.

Mom may not be hoping that the respite care provider looses her job over this.  I am not so magnanimous.

Tuesday, January 10, 2017

Accusations

Last week, I posted a little reminder that a person with dementia can be experiencing a different reality than the rest of us.  I'd like to expand upon that a bit today.

Grandma was in the nursing home in the two years or so before her death.  One day while living there, Grandma started accusing Mom of stealing her clothes.  Grandma was dressed and Mom could show her the clothes she had there in her room.  Grandma didn't believe her.

Another time, Grandma accused Mom of stealing her jewelry, particularly her Thunderbird necklace that my Grandfather had given her in the 1930s.  Mom assured her that the necklace was at home, safe.  Grandma demanded that Mom put all of the jewelry in a bag and bring it to her.  Mom did and a few days later, at her next visit, Grandma complained of the staff not disposing of her trash.  Mom looked over to the corner of the room and recognized the bag with jewelry.  Mom offered to dispose of it for Grandma and took it back home.

Both of these accusations are pretty common, particularly with Alzheimer's.  When this is happening, the person honestly believes the accusations they're leveling.

Dementia can be caused by other conditions than just Alzheimer's.  In a recent exchange with a new friend, I learned of a situation with her step-father who suffered a stroke which caused his dementia.  I have her permission to share.

In his reality, he levels accusations that someone has injured him.  He has claimed that he's been shot in the head, had his ribs broken and most recently accused his wife of breaking his arm.  This most recent incident ended up having the police involved because the couple were checking into a hotel on their way home from a holiday visit when he started screaming.  The police responded and the man continued to insist his wife had broken his arm.

Fortunately, he was wearing a shirt which said "Pardon me.  I have dementia."  His wife was not detained while medical attention was given to the man and it was quickly determined that his arm was not broken nor in any way injured.  In his case, the family and his physicians have determined that his accusations correlate to injuries he suffered in a motorcycle accident 50 years ago.  He doesn't remember the accident any more due to his stroke but they believe his bones ache sometimes and that prompts him to believe that someone has injured him.

The dementia impacts the person's ability to process what they are experiencing.  If your reality is determined by what you're experiencing or how you're interpreting what is happening, then yes, their reality can be quite a bit different from yours.

Monday, January 9, 2017

First 2017 Adventure

It was a cold start to the weekend in NM with enough snow and ice to shut down day hab and cause local officials to encourage residents to stay home.  Mom and Lyn were safe and snug.  For some reason, the winter weather prompted them to go on an adventure on Sunday.

Sunday morning saw them bundled up for a trip out to the Bosque to see what birds and other wild life they could spot.  Why would you go to an outdoor wildlife reserve in the middle of Winter?  The Bosque's residents change with the seasons.  The lack of leaves on the trees allow you to spot birds which you might not otherwise spot.

Lyn was quickly able to spot three Bald Eagles, a Golden Eagle, and three Mule-Eared deer.


They also saw Snow and Canada Geese as well as several large herons.  Lyn was happy.

The snow and ice from Friday had melted off.  It was a cold but clear day which made for a nice outing.  They weren't up and out as early as the birders with their very large cameras.  Some of them had been set up by 4:30 AM.  Lyn was impressed by the large sizes of some of the lenses they were using.

Wednesday, January 4, 2017

Your Reality My Reality

If you're working with someone who has Alzheimer's or another disease which causes dementia, you need to remember this one piece of information.  The other person's reality is NOT the same as yours.

I cannot stress this enough.  You are not dealing with someone who plays by the same social rules as you.  The internal governor is broken.  The person cannot process their experiences or their emotions in the same way you can.  Heck, with the progressive nature of the disease, they may not be able to process in the way that they could have a year ago.

So, if you're caring for someone with Alzheimer's and something hurtful is said, you MUST consider the source.

It is often the disease talking.

Tuesday, January 3, 2017

Follow Up on Solanezumab

In 2012, we learned about Solanezumab by Eli Lilly which was in phase III trials.  The results at that time were mixed and the company decided to move forward with testing to determine if there was any clinical benefit from the drug.  

Late last month, it was announced that Solanezumab additional trials have failed to change the progression of Alzheimer's in human subjects.  An additional 2,000 patients were tested and no slowing of the disease was noted.  In other words, Solanezumab had no impact.  

Solanezumab was targeted to clear accumulations of amyloid beta.  Several other failed treatments have also focused on the same symptom of Alzheimer's and, to date, none have succeeded in humans.  

So, is the story of Solanezumab finished?  Not yet.  Some improved cognition was noted.  Some theorize the dose tested was too low.  Some theorize that the patients tested were too advanced in their Alzheimer's disease to gain benefit from the drug.  Additional testing is scheduled to focus on individuals who are at risk but are not yet symptomatic of Alzheimer's.  

Monday, January 2, 2017

Soiling

Unfortunately, soiled underpants are a reality with Alzheimer's.  If this is TMI for you, then feel free to click away.

We'll wait.

Still here?  Ok, good.  This may be an uncomfortable conversation for you, but if you're dealing with the care of someone with dementia, it is something that should be discussed.  If it helps you, I have a cocktail at hand as we talk.  Don't tell Lyn.  She'll get mad at me for both the topic and the cocktail. She may even threaten to re-educate me again.

Incontinence is not a guaranteed dementia event.  However, it is common enough that we should address it.  It can be either urinary or fecal incontinence or both.  The person may have it only a few times or may loose all ability to control their bodily functions and need specialized garments and care.

I seem to recall Grandma needing Depends undergarments due to frequent urinary incontinence and a chronic Urinary Tract Infection.  Lyn occasionally experiences some urinary leaks at night during her sleep.  They're not major and do not happen nightly.

Jim Breuer, the comedian, has spoken of his need to hose his father down after a particularly explosive bout of fecal incontinence.  He also indicates the clothes were not worth salvaging and needed to be burned.  Mom didn't have to resort to that level of intervention recently.

On the day after Christmas, upon returning home from eating lunch out, Mom heard Lyn's stomach rumble as if she was hungry.  Lyn went into the bathroom and after a few minutes, Mom heard "Oh no."  Lyn had soiled herself.  Mom asked Lyn to bring her the soiled garments and take a bath to clean up.  Mom heard a second "Oh no" and discovered a bit of mess on the floor of Lyn's room.

Fortunately, the accident happened at home and Mom was able to redirect Lyn in such a way that Lyn didn't feel mortified by the event.  Unfortunately, this may become a more common occurrence and additional toileting prompts may be required to avoid a public accident.

Additional Information:
Clinical Stages of Alzheimer's (includes information about incontinence and expected stages)