Thursday, April 30, 2015

A Tough Week

Lyn's had a bit of a tough week so far.

Early in the week, there were storms which frightened her.  There was rain, a bit of wind, a even a bit of hail.  Snow fell in the mountains but not around the house.  The storms unsettled her and one evening she was clutching teddy bear while sitting on the couch.  Even when the storms passed, she wasn't convinced and it took extra effort for Mom to assure her they were safe.

On Tuesday, when Mom picked her up from day hab, she was exhausted and pale.  She normally looks almost sunburnt on her face but even that red was gone.  She felt like her head would explode and was sneezing and blowing her nose.  Her face hurt, particularly above her eyes.  As they left, Lyn announced to the director of day hab that she wouldn't be there on Wednesday because she was sick.

She didn't go to day hab as she predicted.  She was seen by her doctor in the morning.  It looks to just be a cold.  There's no sign of a sinus infection or ear infection.  The doctor gave Mom a script in case Lyn's not feeling better in a week.

At last report, Lyn wasn't sure she would attend day hab today.

Tuesday, April 28, 2015

Deciding What to Wear

Monday morning's conversation between my Mom and step went like this:

Lyn:  I can get dressed all by myself.
Mom:  That's good.  I knew you could.
L: Is it going to be cold or cool today?
M: Cool.
L: I don't know what that means.  Is it a little cold or a lot cold?
M: A little cold.  I'd wear a short sleeve shirt since you'll have your jacket.
L: No.  I wear my jacket when it's a lot cold.
M: Ok.  I'd still wear a short sleeve shirt.

She picked a short sleeve and wore it with her jacket.

Monday, April 27, 2015

Solitaire

Lyn has played solitaire on the computer for as long as she's had access to a computer.  My husband has kept her supplied with one used computer after another for many years now.  Before then, she had access to solitaire on Mom's computer.  She loves the game and has spent many hours flipping card after virtual card.

Lyn's no longer able to play the game.  It is a very recent change.

Last week, she was in her room playing when she got frustrated and came out to tell Mom the computer wasn't working.  Mom suspected there was nothing wrong with the computer and offered to let Lyn use her computer.  Lyn accepted.  Mom opened the game and stepped out of the way so Lyn could play.  A few minutes later, Lyn was just as frustrated as she was when she tried to play on her own computer.  Mom asked if she wanted a little help.  Again, she accepted.  Mom pointed out a card she could move.  Lyn studied the board and still couldn't figure out the next move.  Mom pointed out another card that could be moved.  A few more times like this and Lyn was fully disgusted with herself.

"I just can't do the numbers!  They don't make sense."

This was a fast change but not surprising.  Number work is actually one of the early failures with Alzheimer's.  I honestly think the only reason she's played solitaire so long into her disease progression is because she would sit for hours to play regularly.    I think that time has now passed.

Friday, April 24, 2015

When is Yes No Longer Yes

On Wednesday, Henry Rayhons, aged 78, was found not guilty of sexually assaulting this wife when she was an Alzheimer's patient in a nursing home.  The case is an interesting one and raises a powerful question.  Is there a time when "Yes" no longer means consent is given?

From the various articles I've read on the case, the couple were devoted to each other.  It was a second marriage for both and there appears to have been friction with Mrs. Rayhons daughters.  Mrs. Rayhons developed Alzheimer's and was eventually placed in a nursing home where Mr. Rayhons continued to visit her regularly.  According to the articles, physical intimacy was a regular part of their relationship and Mrs. Rayhons was happy to see her husband when he visited her in the nursing home.  At some point, he was advised that she was incapable of giving consent to intercourse.  But was she?

Without Mrs. Rayhons alive to speak for herself, we have no way of knowing.  Could he have taken advantage of her?  Yes, of course he could have.  I don't know if he did or did not.  However, I would like to posit that it is entirely possible that Mrs. Rayhons, even in a late stage of Alzheimer's may have given him indications that she was interested in physical intimacy.

Sex is a primal and instinctual activity in which most of us engage.  We have sex because it feels good even when we're not trying to produce offspring.  We have sex long after we've left our childbearing years behind.  People can enjoy sex regardless of a physical or intellectual disability.  If Lyn was living in a group home, she would be sexually active and willing.

So, is it possible that Mrs. Rayhons still sought physical intimacy even though she couldn't remember her daughter's name?  Yes.  I believe it is.  So, when is "Yes" no longer consent?  Is it when your legal guardian or your caregiver decides that you're too impaired to know what you want?  How do they make that decision?  Is it when they are personally uncomfortable with the thought of an impaired individual having or wanting intimacy?

I don't know but I do believe we need to discuss this.  Mom and I have discussed it and I'm under very clear orders to stay out of her business if she's having an intimate moment no matter how old or impaired she is at the time.  And to that I say "Yes, ma'am!"

Additional Information:
Changes in Sexual Behavior
Intimacy, Sexuality, and Alzheimer's Disease: A Resource List
Intimacy and Sexual Issues

Wednesday, April 22, 2015

Strawberry Water

Lynn's particular about what she drinks.  She likes some juices and ice tea.  She will drink milk on occasion.  She prefers the strawberry flavored carbonated water and will gladly drink that.  Plain tap water is a non-starter.  So, for years, Mom's bought her the strawberry flavored water.

There were a couple of places they could buy it there in town but over the years that list has dwindled to one store.  When they came to visit, I tried finding it here with no luck.  Two weeks ago, Mom was not able to find it where she normally buys it.  Thinking the store was just out and knowing she had several bottles at home, she figured she'd get it when next she was in the store.  No luck.  They were out again.

She asked an employee for assistance and learned that the product is a discontinued item.  The employee kindly checked the back to see if there were any cases hiding.  There were none.  She tried four other stores and asked our uncle to check the store where he and his family shops.  Still no luck.

In the meantime, she received a survey request from the store where she normally buys the water.  She took the survey and indicated she was not able to find a desired product.  She gave the information and explained it was for an individual with special needs who could not tolerate change.  In less than 24 hours, a customer service representative from the corporate headquarters called to follow up on the survey.

The employee was concerned about the survey and asked for the UPC code from Lyn's last bottle.  Mom explained that Lyn has Alzheimer's and this is the only water she's willing to drink.  The employee was very kind and has promised to search all stores to find any of the product.  Mom has offered to buy whatever is available.  The employee has asked for a couple of days to see what, if anything, is possible.

Mom choked up at the lady's kindness and willingness to go the extra mile for Lyn.  She indicated that she understood that Alzheimer's limits change.

Mom writes "I know there are so many good, kind people in the world willing to help."  This employee is definitely one of them.

Tuesday, April 21, 2015

Sending Her Postcards

Mom suggested that I find a postcard to send to Lyn while I was at my conference.  Getting a piece of mail makes her very happy.  I thought it a good suggestion and readily agreed to it.  I knew I wouldn't be able to Skype with Lyn for two weekends and had hoped it would help a little.

I was in New Orleans for half of my stay before I found a few minutes and a nearby location to my conference to pick up some postcards for Lyn.  The conference schedule was packed and the daily rain was often quite heavy, keeping me in the conference center or on the shuttle to my hotel.  Then, towards the end of the conference, I had to venture a little further into the center than I had up to that point where I discovered a UPS store on-site which sold postcards.  I bought four and quickly wrote one out to Lyn.


For the next few days, I wrote a card out and dropped it with the front desk of my hotel to go out in the daily mail.  As of Sunday, when I returned home, Lyn had just received the first one.  I didn't tell her that more were on their way to her.  I spoke to her for just a few minutes when I got home and she was excited to thank me for the card.

I'll have to do the same thing when I take any future trips that don't involve her.

Friday, April 10, 2015

April Break


It is that time of year when I head off to my employer's annual conference.  The conference has me engaged with clients all day, every day, often into the night.  Fundamentally, I'm an introvert and I find this exhausting unlike my more extroverted colleagues who get great energy from spending the day being on point with everyone they encounter.  Don't get me wrong.  I enjoy the conversations which will be held.  I love seeing someone get an answer they needed or have an "Ah-Ha!" moment.  

At the end of the day, however, I retreat to the solitude of my hotel room to call home and check on my family, to quietly eat dinner in my room and to review the presentation scheduled for the next day.    This year, I get to present material for four of the five days.  My presentations are written and prepped but I will review several more times before stepping on stage.  

The conference is in a city that I've not been able to visit before.  I'm fortunate to be able to schedule a few extra days to stay and explore the area at my own pace with my favorite person at my side.  So, don't expect a post until at least Tuesday, April 21.  

In the meantime, step away from the screen and enjoy the Spring as it blooms around you.  

Wednesday, April 8, 2015

Changes from the Team Meeting

Lynn's team met yesterday for their regularly scheduled monthly review.  They discussed the frustration Lyn's experiencing at day hab and the consideration of reducing the days there from 5 to 3.    One of the team members suggested a different modification to Lyn's schedule.

It was pointed out that Lyn's normal pick up time coincides with an uptick in activity at the facility.  Some clients leave at that time while the groups which have been on the day's community activity are returning to the facility.  As a result, there's a lot of noise and people bustling about.  The director at the facility reports that Lyn's actually happy through the majority of the day.  So, the suggestion was made to pick Lyn up a half an hour earlier to see if that alleviates her frustration.  If it works, then she'd still be able to attend 5 days a week.

It is worth a shot and Mom's already made the adjustment to the schedule.  Hopefully, this will make departures less frustrating for Lyn and keep her time at day hab regular and positive.

Tuesday, April 7, 2015

Mind Crowd

Have you taken Mind Crowd's test and participated in TGen's research into Alzheimer's?  If you have not, do so.  The test only take about 10 minutes and your results will be part of a long term research project.  In return, you'll get to see how your results compare to others of your gender, your age and your educational background.

The project is currently in the first phase.  When phase two starts, individuals who have participated previously and who meet certain criteria will be invited to participate in more on-line tests and submit a DNA sample.  The goal of the entire study is to gain a better understanding of how our genome impacts our cognitive functions.

Nearly 52,000 individuals have participated to date.  I participated last year.  The goal is to reach 1 Million participants.  You can help them get a little closer to that goal.

Monday, April 6, 2015

Searching for That Penny

My sister maintains three places for keeping her coins.  The milk bottle I sent her is used to store just pennies.  Her silver coins are stored in her Minnie Mouse and Cinderella banks.

Last week, she pulled out her Cinderella bank and was very concerned because she just knew that a single penny had gotten mixed in with the nickels, dimes and quarters.  She emptied out the bank and searched through, finding not one penny but two.  She was quite upset about this.  What was even more upsetting to her was that the penny she knew was supposed to be in there was not there.

Mom assured her that no one was around to mess with her coins and that the penny may be in one of the other two banks.  Lyn clearly didn't believe Mom on either account.  Without directly accusing Mom of telling a lie, Lyn stated that Mom was clearly mistaken on all accounts as she marched into her room to get the other coins.

She decided to look in the milk bottle first, pouring it out onto the table.  Fortunately, as she sorted through the pennies, she found the one for which she was looking.  She quickly calmed down once she was assured she had the penny she wanted and that it was in the milk jar where it belonged.

Believe it or not, this is common for Alzheimer's patients.  They frequently accuse others of stealing their money.  I thin it is interesting that money is such an issue for my sister.  While she's never had to maintain the finances of a household or worry about paying bills, she's had spending money available to her for at least the last two decades of her life.  She's paid her way into events or for her own meals at restaurants.  While the amounts she's concerned about are insignificant; to her they are meaningful.   Hopefully, future ventures into the lost coin realm will be this easily sorted out as well.

Thursday, April 2, 2015

MIND Your Diet

Scientists, doctors and nutritionists have known for years that what you eat has a huge impact on your health.  We don't need to watch Supersize Me to understand that food high in fat, salt and sugar is really bad for us.  Individuals who have particular medical conditions may follow particular diets to try to improve their overall health.  For example, a colleague of mine eats blueberries every day to keep a lower blood pressure and my father-in-law consumes red rice to reduce cholesterol.  You've probably heard of the Atkins diet for weight loss or the Mediterranean diet for a healthy heart.  Now there's the MIND diet.

The MIND diet combines aspects of the Mediterranean diet with the DASH diet which reduces hypertension and appears to help protect against Alzheimer's.  Strict adherence to the diet suggests greater than 50% risk reduction while moderate adherence seems to impart about a 35% reduction of a person's risk of developing Alzheimer's.

While diet is just one component of a person's risk factors, this study is very interesting.  A second study released this week also indicates that green leafy vegetables are beneficial for slowing cognitive decline.  Given these studies, my husband will have to just accept that his salads will no longer contain iceberg lettuce.