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These days, "I don't know" has been replaced by "I don't remember" and "It wasn't me" has been replaced by Nikka.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


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.