Product Reviews

Over the weekend, I was contacted by a vendor on Amazon offering to send me a brain health related product for me to try and review.  I don't intend to profit off this blog.  The readership is small and mostly personal.  Even if it were larger, I've never considered even placing adds on Dementia Be Damned.  When I link to resources, I try very hard to find resources which are freely available to you and to limit anything that's behind a pay wall.  That approach as been in place since the day Mom and I decided to start DBD.

To that end, let me assure you that I won't be accepting products for me to try out and review.  It goes against the approach we've decided to take here and, I'm afraid, it would be misleading to you.  Let's be honest.  The topics of DBD are my sister's life and Alzheimer's.  If I were to review a product that claims to improve brain health, what could I say about it?  Is the product's producer going to provide me with their test data from reputable labs which show beneficial results?  Are they going to pay for me to under medical tests before using their product and again after product use to determine there's a change?  Alzheimer's is a very long process.  How could we expect to have meaningful product results to review within 45 days?  How could we realistically say that this product would stave off Alzheimer's?  

My red flags started waving right away.  It sounds like a whole lot of quackery to me.  The part of the inquiry which made me giggle was where they said they had checked out DBD and all of my product reviews.  Perhaps they've found reviews I've submitted elsewhere for dresses I've purchased on-line or cooking products.  But here?  Hardly.

So to the person who inquired and for any who may think that DBD is a good place to hawk their goods or have DBD provide reviews on their site, I assure you, I'm not interested.  

Sudden On-Set

On Thursday, Lyn had a follow up with her physician regarding the hearing test.  The audiologist had not really explained things well and Mom wanted an opinion about seeing an ENT.  During the visit, Lyn's ears were checked twice with an otoscope and they looked fine.  Before they left the office, the doctor's staff called and arranged an appointment with the ENT.

An hour later, Mom and Lyn were finishing up an early dinner at one of Lyn's favorite restaurants when Lyn's behavior suddenly changed.  She grew very agitated and looked out the windows, seeming to check the level of light and time of day.  Mom could tell Lyn's agitation was high and quickly wrapped up the meal so they could depart.  Lyn tried to remain calm but burst into tears as they were resolving the bill.    The restaurant staff were immediately concerned  and Mom assured them that Lyn would be OK.

They got home and Lyn resigned for the night early  Waking about 2 hours later complaining of her head hurting  and sobbing again.  When at the restaurant, Mom thought Lyn's behavior change was a result of Sundowner's anxiety.  At this point, she suspected the behavior change was the result of a sudden infection.  By morning, it was painfully obvious that Lyn needed to be seen and Mom allied the physician's office.  Without a same day appointment available, Mom ended up having to take her to Urgent Care where it was found the had a raging double ear infection and the beginnings of a sinus infection.

The urgent care physician was able to access and review the physician's notes from the visit which happened less than 24 hours before.  She was surprised by the speed with which the infection hit.  Lyn was able to tell them that she had cried at the restaurant because of the pain in her ears but that she was confused by the pain.

She's on antibiotics and recovering now.  Her illnesses are going to come more frequently as her immune system is less and less able to respond to viruses and bacteria.

A Welcome Laugh

I called to check on Mom and Lyn the other night.  Mom and I were merrily chatting away and I could hear Lyn grumbling in the background.  Mom asked if Lyn wanted to talk to me.  She did not.  She wasn't interested in it at all.  The grumbling increased in volume but she wandered away.  A few minutes later, Lyn comes back and loudly proclaims "I guess I should speak with her."  Her voice was dripping disgust and obligation.  I was clearly an imposition.  Mom and I burst out laughing.

Lyn cheerily asked how I was and how my kid are doing.  If I hadn't heard her her before she took the phone, I would have thought she was eager and interested in the conversation.  I knew she wasn't into it and let her off the hook pretty quickly.  She walked off grumbling some more.

Mom and I picked up our conversation and discussed the various upcoming doctor appointments.  Lyn's having a follow up on her hearing tests.  We don't know if Lyn needs to see an ENT or not.  The tests say her hearing is in a normal range.  Her behavior indicates it is not.  Is she actually able to ear and is not able to process it?  Would a hearing aid be needed or would it even make a difference?  If she got a hearing aid, would she be able to deal with learning how to handle it?  These are the questions we have.

Lyn heard "ENT" and loudly corrected us.  "I don't want to see an ENT!  I want to be seen by an EMT!"  When Mom and I could stop laughing we agreed with her; being seen by an EMT would be more interesting.

After our call ended, I received an email from Mom.  It was an apology as mandated by Lyn.  Lyn was convinced that Mom was laughing at me because I had slipped on ice earlier in the day and had fallen.  Lyn was angry with Mom for being mean to me.  It is a good thing that Lyn can't read.  She was satisfied Mom sent the apology while not knowing we both got a good laugh out of the whole series of events.

Come Here

My siblings were born in Italy while my father was stationed there for four years.  My parents lived on the economy, renting an apartment above the cheese shop.  They learned Italian and integrated into the community.  As a result, Mom integrated some of what she learned in Italy into her every day life.  

Her cooking was clearly influenced by what she learned in Italy.  So was some of her speech.  Many of her verbal corrections to us were in Italian.  If she'd had enough of our antics, we'd hear "Basta!"  If she wanted us to come right now, we were likely to hear "Vieni qui!"  If we were really in trouble, we'd hear the Italian versions of our full names.  Oddly, I think I've heard my name growled this way than my sister's.  Surely, that's not an accurate memory.

All of us say these phrases from our childhood to some degree or another.  My kids hate when I bark out a quick "Basta!" but they know what it means and it is a heck of a lot faster than saying "That's enough."  Even Lyn uses "Basta" and "Vieni qui" from time to time.

Her ability to pronounce words is declining noticeably again.  It seems like she's mispronouncing words that are larger than 2 syllables.  We're catching it in nearly every conversation now but context and anticipating what she's trying to convey glosses over a lot for us.  If something is out of context or is just stand alone word or phrase and we'll struggle to guess what's she's saying until we determine what the new pronunciation is meant to convey.

We've now learned that "Pity Paw!" means "Vieni qui!"  As she's loosing her language skills, we're learning new ones.

Circus Sunday

The circus was in town on Sunday and the Shriners generously sent Lyn tickets. 

She was excited to attend and enjoyed the spectacle.  She enjoyed the trapeze artists and giggled over the antics of the clowns, especially the one who kicked another in the backside.  She still loves the motorcycles in the metal cage as well.  She was most impressed with the aerial artist dressed as Spiderman.  

 

I know she doesn't look thrilled by these pictures.  She just doesn't know what to do with her face anymore during a picture.  When she spoke to me on Skype after they got home, she was full of smiles and laughter.  Her expression was soft and her eyes light.  

She was actually very excited to show me her program which is also a coloring book.  This impressed her.  

Thank you again to the Shriners for sending her tickets.  You have once again delighted her and we greatly appreciate your generosity. 

Valentine's Dinner

When Lyn was still working, her manager at Wendy's was a major factor of Lyn's work day.  She kept an eye out for Lyn.  She was firm but fair, demanding that the job be done properly every time.  Lyn adored her.

Somewhere along the way, it became known that Mom was a baker and the manager made sure that Mom knew her favorite cookie.  A couple times a year, Mom would whip up a batch of peanut butter cookies and send them in with Lyn.  It was always a happy day for the manager when a batch of cookies were delivered.  When Lyn stopped working, Mom promised to still deliver cookies from time to time.

The manager eventually retired from Wendy's.  She and her wife decided to open a car repair shop.  It was something she had wanted to do for a long time.  Mom was delighted to find out about their business.  She's got a trusted place to take her car and knows right where to deliver the cookies.  The friendship which was started over burgers and fries continues.

Mom and Lyn hosted the manager and her wife for an early dinner on Saturday.  Lyn was SO excited!  She had been looking forward to it for days.  Mom made lasagne and apple cake.  Both are family favorites.  My little one says Grandma's "pasagna" is the best.  Nikka decided she loved the ladies and went from one to the other for belly rubs.

Through it all, Lyn was happy and relaxed.

Red Wine

A compound in red wine shows promise for preventing memory loss.  Well, not quite.  The compound in question, resveratrol, is found in a number of common foods such as grapes, blue berries and peanuts.  The study showing positive results of using resveratrol indicated a doubling of the growth of new neurons and improved blood flow.  The study was done on rats.  Until such a time as a study of resveratrol's neurological impact can be studied in humans, we'll just have to keep drinking wine and eating berries.  As if I needed another reason to crack open a bottle.

Corporate Follow Up

Mom came home from picking Lyn up yesterday afternoon and found a message waiting for them.  A person had called about "the claim that has been filed."  Once Mom realized that the person who called had identified the parent company of the restaurant where Lyn was burned by coffee this weekend she called back.

She identified herself and that she is Lyn's legal guardian.  She asked how she could help because as far as she knew no claim had been filed.  It turns out that when an accident happens at the restaurant, management is required to notify the headquarters.  Headquarters then initiates what they call "a claim" to collect information and prepare for any potential law suit.  The person initiating the call about the claim didn't even have a brief sketch of events.

Mom conveyed the sequence of events as she knew them.  Mom let the representative from headquarters know that pictures were taken and an incident report was filed.  Mom confirmed that all of that was necessary, state mandated reporting that happens when anything happens to an individual covered by New Mexico's DD Waiver program.  Mom highlighted the poor response by the waitress who caused the burn and praised the actions of the young woman who had been bussing the tables.  She encouraged them to promote the young woman.

It was agreed that no law suit was necessary.  The burn was minor and did not blister.  Lyn did not need medical attention.  The day of the accident, the manager had offered to have the restaurant pay for Lyn's medical care if she needed to be seen.  Mom was surprised by the follow up call, having considered the steps of the young woman and management to have addressed the situation at the time.

The representative from the headquarters apologized again and offered to send a gift certificate in the hopes they will return as customers, even if it is to a different location.  Mom asked that any gift certificate be sent directly to Lyn because she was the one involved and because she loves opening mail which comes in her name.

Lyn was so excited to learn she's receiving a gift card, she called me to tell me right after she finished dinner.

The Surly and the Good

On Sunday, Lyn was out with her respite provider.  They're working together again.  They had stopped for a late breakfast.  The restaurant was busy as can be expected on a Sunday morning.  Part way through their meal, Lyn suddenly jumps and says "Ow!  That burns!"

A waitress had just walked by with a pot of coffee.  Lyn had coffee down the back of her neck.  The waitress was careless and had the coffee pot tipped so far she was spilling it as she walked.  Several people witnessed the incident, phones were pulled out and pictures taken.  The waitress grumbled a half-hearted and surly "sorry" and stalked away.  A moment later the young woman who was bussing tables came over to check on Lyn.  She brought an ice pack.  After checking on Lyn, she notified the manager of the accident.

The manager and the General Manager both came over to apologize.  They brought some first aid spray which was applied to the burn.  It was a minor burn that was more red from the ice at that point than from the coffee.  Fortunately, Lyn was wearing a hoodie and her hoodie took the majority of the coffee.  They offered to pay for the hoodie to be professionally cleaned.

Lyn's respite provider notified Mom within a few minutes of the incident happening.  She also notified Lyn's case manager.  They were able to finish their breakfast but the incident cut short their plans for the day.  The respite provider had to fill out an incident report and Lyn was no longer interested in going out.

Mom was ready with the aloe the moment they walked in the door.  By the time I Skyped with them in the afternoon, Lyn was settled and happy.  The burn was nothing more than an inconvenient episode earlier in the morning.  It could have been worse.  I think the behavior of the waitress was a bigger offense than the accident.  Fortunately, the young woman who had been bussing tables stepped in to help.

Picking Clothes Each Day

For some time, Mom has been helping Lyn pick her shirts each day.  Lyn will come out of her room and ask what she should wear.  Her challenge isn't just about figuring out if she needs to dress for cold weather.  She also needs help figuring out which color she wants.

Mom helps in a couple of different ways.  First, she rotates Lyns clothes seasonally.  When the weather turns warm, she packs away Lyn's Winter clothing.  If it is out of sight, Lyn doesn't think about it and doesn't try to wear a turtleneck under a sweatshirt in the Summer or a tee shirt on a snowy day.  Mom also realized that Lyn had stopped pulling clothing from below the top layer if she's looking in a drawer.  Mom tends to hang most of Lyn's clothes now, allowing Lyn to see her options more easily.  For things in drawers, Mom rotates them.  Even then, Lyn still struggles to pick out what she wants.

Now, she's asking for assistance with her pants each day.  For the most part, she wears black jeans or blue jeans.  There's not a lot of variety and even this is proving to be too much for her.  On Saturday, she came and asked for help.  She ultimately decided she wanted to wear a white turtleneck but didn't know what pants would go with the shirt.  Mom asked Lyn what pants she thought would be a good match.  She looked at six different pairs before settling on the last one available to her.  Mom assured her it was a perfect match.

It takes a lot of patience at this stage.  When people tell me that they admire how patient I am, I quail internally but outwardly laugh.  I've never considered myself a patient person and my model for comparison is Mom.  I know she doesn't always feel helpful or patient but she's a master at not letting my sister see that.

Lyn still needs to have as much independence as possible.  Sure, Mom could come in and just pull an outfit out of the closet and not give Lyn a choice.  It would be easier but it wouldn't be treating Lyn with respect.  Removing opportunities for Lyn to engage or participate in her care would remove dignity from the equation.  It's not about talking down to her or treating her like a child.  It is about simplifying her options so that she is not overwhelmed by the mere task of selecting a pair of pants or a shirt.  There will come a day when Lyn may no longer be able to express her preferences and Mom will have to lay out the clothes or dress Lyn directly.  Until that time, however, there really is value in getting Lyn to participate in choices even as small as this.

Lyn got dressed and was happy with her choices.

Unexpected Excitement

Lyn was ready to fold up yesterday afternoon by 3:30.  She was in her room contemplating getting a bath when she came rushing out with a panicked expression.  "Mom!  I hear something strange!"  Mom asked her what she heard and where she heard it, thinking she may have been having an auditory hallucination or not processing a legitimate sound well.

Lyn led Mom to the door of the closet where the furnace sits.  It is between Lyn's room and the garage.  Mom opened the door to check for the sound and discovered a bird.  Lyn was hearing strange sounds.  Mom was unable to catch the bird and called her brother for help.  Knowing our Uncle was on his way, Lyn decided she had to stay up to see him.

He arrived a short time later and discovered not one; but two birds in the furnace room.  They had come down the flue.  He put a plan in place and set about catching the birds to release them.

While he was working Lyn hid in the kitchen.  She didn't want to even see the birds.  Mom says her expression was still one of a lot of fear.  When our Uncle caught one bird in his hat, he couldn't show it to Lyn without risking the bird getting away.  That one was quickly taken outside and released.  The second bird had backed itself in a tight spot and was able to be caught with just his hand.  He asked Lyn if she wanted to see the bird.  She did not.  Thinking she might be worried that the bird was injured, Mom tried assuring her the bird was fine and it was OK to look if she wanted.  She did not.  A moment later, that bird was also released and flying outside.

Our Uncle will return later in the week to put up some wiring around the flue which will keep the birds out.  Shortly after he left, Lyn was bathed and ready for bed.

A Snow Day

At the end of last week, Mom and Lyn woke up to falling snow.  When Lyn came down the hall after waking up, she announced "I think we should stay put today."  The roads were clear but Lyn wasn't at all interested in heading anywhere.  She didn't want to go to day hab.  She didn't want to run errands. She didn't want to even get dressed.  She's never turned down an opportunity to go out that we can remember.

When Mom suggested driving would be fine, Lyn countered with "No.  Let's not take a chance."  Lyn decided it was a day to stay put and declared it a pajama day.

Mom said her persona was entirely different that morning.  She ate breakfast, wrapped her robe around herself and settled in with the dog.  "I am comfortable."  The day was spent in small pursuits and she was content.

The Fatigue Theory

Lyn's sleeping 14 to 16 hours a day.  She's ready for bed by 4:30 and struggles to make it to the 5 o'clock hour.  We know Lyn sleeps more when she's menstruating.  She always has.  When she didn't perk back up when her period ended, we wondered if the activities at day hab were wearing her out each day.  If so, that's not a bad thing.  We were just watching to see what pattern established itself.  However, for the past two months, the increased need for sleep has really established itself as the new normal.

Mom writes:  "Ok, my theory about why she's so tired after a day at day-hag has been shot down.

I think it makes sense that after working hard all day to stay on task there, she's exhausted and goes to sleep early.  Well, today we stayed inside.  The only thing she did was make her bed, shred some papers and get trash together.  At 3:30, she took her bath and put on clean pi's since she'd worn the others for 23 hours.  Naturally, about 4:15, she wanted dinner.  I tucked her in bed a few minutes after 6 and she was asleep by 6:05.  She was complaining of pain around her let ear.  I looked and saw and felt nothing.  I told her I didn't find anything and she just said "oh."  I think these aches and pains will continue to manifest more and more.

Poor kid."