Wednesday, September 28, 2016

Having Fun

Lyn likes to visit an arcade in town.  They have some games like Whack-a-Mole and Skee Ball that she can play and earn tickets for her score.  She saves up her tickets.  When she has enough, she trades them in for things like her Cinderella and Minnie Mouse banks or the framed poster of the Disney Princesses which now hangs in her room.

Last week, her Community Access provider took her to the arcade and took a picture.  Lyn instructed Mom to send it to me for the blog because the picture was a good one.


Any picture in which we get a smile counts as a good one.

Tuesday, September 27, 2016

Your Vote = Impact

I got a bit distracted by last night's Presidential debate.  It was a hot mess if ever I've seen one.

Regardless of where you stand on the political spectrum, please be aware that who is elected can have a direct impact on the funding of and research for a treatment for a disease.  It doesn't matter if the disease is prostate cancer or Alzheimer's.

The President sets the budget for Congress.  It, of course, gets modified by Congress.  If the President has concern about the health of the populace or a desire to help find a prevention or cure, the President can include a line item in the budget.

The President signs into law bills which provide additional funding such as the $122 Million increase in funding for Alzheimer's research which was passed in 2014.  The President may also issue executive orders such as the one in 2009 to support ethical embryonic stem cell research.

The President also appoints a number of science and health related positions.  As a result of the appointments, the President's appointees have direct impact upon how programs are implemented, how funds are used.  For example, the President appoints the Director of the National Institutes of Health.  The NIH, in turn, then provides substantial funding to research programs at a number of universities and other institutions around the country which are trying to find a cure to any number of diseases, Alzheimer's included.

As you consider for whom you will vote, consider where the candidates are on issues.  Look beyond appearances and the attacks on other candidates and consider their positions on the issues.



Additional Information:

Who Picks Up the Tab for Science
Impact Report: 100 Examples of President Obama's Leadership in Science, Technology, and Innovation
Fact Sheet: President Obama's Precision Medicine Initiative
Compare Presidential Candidates
Clinton vs Trump: Your Blind "Issues Taste Test"
US Election: Where Trump and Clinton Stand on Key Issues


Monday, September 26, 2016

In Memorium: Isabel

Last week, my last Great Aunt passed away.  (Not my aunt in Tennessee.)  She was 93.

Aunt Isabel was the second to youngest of the ten children which made up the Hazlewood family.  She was my grandmother's youngest sister and one of her first students.  Her first career was as a nun.  She was passionate about her faith but the demands of her calling were detrimental her health and she was granted a release from her vows.  Her second career, the one that lasted until her retirement, was as a school librarian.

She was a feisty lady who gave very precise answers.  Some may say she was difficult.

Aunt Isabel and Uncle Garth

She loved New Mexico and life in the small town of Moriarty where she lived for as long as she was capable.  Her home was on the plain on the outskirts of town.  You turned at the pink house to find hers.  Her garden was tidy and she grew the biggest carrots I've seen, many with two or three legs.  Pulling carrots from her garden was a feat of strength and perseverance.  She taught me how to use a weed-wacker.  Her spot of grass was too small to bother with a lawn mower.

She loved to read and loved that I did too.  She gave me my first exposure to Tolkien and Kipling, to Shakespeare and Pearl S. Buck.  When the school where she worked retired books, she would pick out the good ones and pass them to me.  It didn't matter if the books were higher than my grade level. She knew they would be read.

Once, my grandmother wanted to take me on the train.  She and I rode North and Aunt Isabel met us at the train station in Las Vegas.  She drove us back to Albuquerque in her El Camino and we stopped for dinner on the way.  It was a grand adventure to be out with my Grandma and Aunt Isabelle.

Years ago, Aunt Isabel made arrangements for her care.  While it was not diagnosed, to my knowledge, she had dementia; most likely Alzheimer's.  Four of the five Hazlewood women had it.




Friday, September 23, 2016

Travel is Trauma

When you think of travel you probably think of the fun or the business you have scheduled once you reach your destination.  If you're flying, you may complain about having to go through airport security or the stress of a delayed or canceled flight.  If you're driving, you may have your stops plotted out so you know you won't run out of gas.  When you travel and have dementia, you're actually courting trauma.

We knew that travel could have a negative impact on Lyn's abilities.  What we didn't realize until her doctor's visit at the start of the week was that Lyn would respond to the travel as though it was trauma.  The travel of trauma comes from being removed from your familiar environment.  It comes from not remembering where you are going, who you will be seeing or if you will return.  It comes from the change in schedule or the lack of a schedule.  It comes from the stress of travel itself.

Normally, when you travel, you have time to mentally prepare for your trip.  You may know weeks or months in advance that you're going.  You think about it.  You plan it.  You anticipate it.  When a family emergency comes up, you respond quickly but you have the emotional and mental resilience to respond to the stresses of the family emergency.  Lyn had none of that.

The trip to Tennessee was a sudden one.  It was brought to Lyn's attention the night before they left because the decision to go was made just hours before she was told.  She didn't have time to mentally prepare for the trip.  The next morning, they got in the car and drove 1,500 miles.  Lyn could focus on  the destination being where our Aunt and Uncle live.  She couldn't understand the where or the what of Tennessee.

Seeing our Aunt in the hospital was another trauma.  Lyn knows she's dying and is quick to point out that God will decided when our Aunt dies.  Lyn hasn't had a hospital stay since her birth.  She doesn't remember when Mom had one 30+ years ago.  She didn't see me in the hospital when I delivered my child.  What she saw was someone she loves very much in the hospital due to a critical illness and she knew that there was nothing they could do.  She also knew that this trip was the last time she was likely to see our Aunt.  Despite keeping it together in the hospital, it was traumatizing to her.

Despite the urgent nature of the trip, Mom recognized that Lyn needed interventions which others may not have needed.  They drove not due to finances.  They drove because it would prevent Lyn from having to go through the stress of airport security, needing a note from the doctor explaining that Lyn has dementia or risking an encounter with staff who would not facilitate a smooth transition for Lyn.  They drove because if Lyn got anxious and needed a break, Mom could pull off so they could get out of the car.  You can't do that with a plane.  Mom built in a trip to Dollywood and stopped at a massive outdoor sporting goods store to cater to Lyn's desire for entertainment and shopping.

Looking back, would we subject Lyn to the trip again knowing the impact on her?  Yes.  The trip was the right thing to do because of the nature of it.  Will we put Lyn on a plane to bring her to visit my family in VA?  No.  Subjecting her to that level of trauma just so we can have fun would not be right.

Thursday, September 22, 2016

First Day of Fall

Conversations with Lyn can feel like an Abbott and Costello routine.

Mom writes:

On the way home, I said something about today being the end of Summer.

She said she didn't understand.  "What is Summer?"

Mom: "It's the time when it gets hot.  First, we have Winter when it's cold.  Then, Spring when it starts getting warmer.  Summer is hot.  Then, Fall when it starts getting cooler."

Lyn: "So is Summer hot or cold time?"

Mom: "It's hot time."

Lyn: "So, is it going to be hot time now?"

Mom: "No, it's going to be cooler.  It's Fall or Autumn. "

Lyn: "OK, it'll be cold time."

Mom: "The mornings are cool but the afternoon like today will be hot."

Lyn: "Then it's something else?"

Mom: "Yes, it's something else. "

Lyn: "What?"

Mom: "I don't remember."   I was dizzy from going in circles. 

Wednesday, September 21, 2016

Check Up Time

Lyn had a check up with her doctor on Monday.

The Stats:
Weight: down by 3 lbs.
BP: 102/70
Labs ordered: CBC and Sed Rate, Ultrasound scheduled to check the lump under her chin.

The doctor believes that the verbal skills loss which we noticed since Mom and Lyn drove out to TN to visit my Aunt is permanent.  We've heard of Alzheimer's patients getting worse after a trip and knew that was a possibility.  However, there are times when you have to take the risk and go for it.

As noted above, Lyn's doctor is concerned about a painful lump under Lyn's chin.  It has been there for years.  It would swell before her period started and then go down afterwards.  Now, it is always swollen but does get more tender during her period.  An ultrasound and the blood tests are being done to see if they can determine what the lump is or what can be done to ease her discomfort from it.

Lyn's received her flu shot for the year.

As Mom hung up from scheduling the ultrasound, Lyn informed Mom that she doesn't "need to worry about my appointments because I can take care of them."

Good to know.

Tuesday, September 20, 2016

Contemplating Dignity in Death

A friend called me at the end of the week, upset about her mother's struggle with late stage Alzheimer's.  We talked for some time about various aspects of her mother's care.  At the same time, I've been closely monitoring my Aunt's health which is rapidly failing.  In both cases, there has been difficulty getting the need for hospice care to be accepted by one family member or another.  In both cases, an immediate family member has taken on the majority of the care.  These two situations have led me to contemplate the role of dignity in a person's death for the past several days.

(First, let me be very clear.  For this post, I am going to be speaking in terms of providing palliative care and not artificially extending an individual's life.  I am not speaking of the Death with Dignity movement which advocates for physician-assisted death.  I personally do not have a problem with a person seeking to end their life when facing a terminal diagnosis.  It is just not the focus of this post.  Additionally, this post is not calling out the behavior of anyone involved in the care of the individuals mentioned in the opening.  These are just my thoughts which have been percolating as these two individuals approach their deaths with their families by their sides.)

You may have heard the concept of allowing a person to die with dignity.  The term may feel loaded but there are some pretty basic concepts.  Essentially when we allow a person to die with dignity, we're actually allowing for two things.  First, we're allowing the person to be involved with the decisions about their care.  Second, we are doing things which prevent the person from being subjected to indignities.  If we can achieve those two criteria, we can help the person die with dignity.

When a person is facing the end of their life, it is still important that we allow the person to be involved with the decisions about their care to the maximum extent that they can be engaged.  If they cannot be engaged and decisions about their care must be made by someone who has medical power of attorney, then that individual should be evaluating each treatment and each medical decision through the lens of "what would she want"; not "what do I want for her."

There are many times when an individual remains mentally competent as they are dying.  They may deliberately choose to not seek invasive or extensive treatment which may extend their life.  It is their choice to make and it should be respected.  However, respect towards the individual should also be paid on the little decisions.  For example, a patient may be shaky and weak and unable to easily feed himself.  To respect that person's dignity, we should not take the spoon or cup from their hands and take over the feeding activity without first either offering assistance (and having the offer accepted) or receiving a request for assistance.  The action, no matter how well intentioned, demeans the person by indicating that their desires are not relevant to their care.

How can we respect a person's dignity by allowing or encouraging their participation in their care?  Here's a short list:

  • Ask - Ask if she wants her blue gown or the green one.  Ask if he wants assistance to walk down the hall.  Ask if she needs a hand fixing her hair or if he needs help brushing his teeth.  Ask about anything and everything.  Ask about what they would want should their disease prevent them from making decisions in the future.  Ask what they want done with their body when they die.
  • Listen - When you ask a question, stop and listen.  Don't move the moment you hear a response but listen to the response.  You might have thought they wanted the green and find that the blue gown is today's preference.  Their diagnosis will rarely render them suddenly incapable of making a decision.  Invalid is not the same as infant.  Even Lyn has opinions about what she wants or doesn't want.  She should be able to express them for as long as possible and we should respect them.
  • Act according to the person's desires - If the person's desire does no harm, then do as they ask.  If they want a piece of pie for lunch, then let them have a piece of pie for lunch even if you were hoping to save it for yourself.  So, that seems pretty obvious, but there's a gray line with which some people may struggle.  What if the person is asking to cease a medical treatment?  What if they don't want to have any more chemo or another surgery and refuse treatment?  They're going to get sicker.  Isn't that doing harm?  It is their choice to cease treatment and allow the disease to take its course.
The second aspect of allowing a person to die with dignity is where compassion comes to bear.  When we seek to remove the things which cause indignity, we look for those actions or interventions which will remove pain, shame, or embarrassment.

  • Manage Pain - If the person is in pain, provide them with the medications needed to help ease the pain.  Physical contact can also provide comfort.  Hold their hand.  Provide light massage or even brush their hair.  
  • Provide Compassion - Shame and embarrassment may come up as a result of the person's increasing inability to care for him- or herself.  Smooth out those moments when they may no longer have control over their body.  If they vomit and miss the pail, assure them that it's OK even if you are holding back your own gagging reflex.  If they are not able to control their bladder or bowels, help them with proper undergarments and hygiene to stave off an infection.  Never let the person feel as if they are an imposition or a burden to you.  It is not their fault when these events happen and they may be mortified at their lack of bodily control.  The compassion is not just about the big messes.  It also is needed in the daily care of the person.  If a person always was well manicured, keep up their nail care.  Even if they didn't love a particular shade of red, at least keep their nails neatly trimmed.  Make sure they are regularly cleaned up and their hair is tidy.  Think about how refreshing it is for you when you step out of the shower.  Help the person feel put together and clean too.  
Death is not always a sudden event.  It can be a slow process.  Allowing death to happen while helping maintain the dignity of the person who is dying is an act that honors that person.  It is an act of love.  It may be deeply painful to let the person go but it is an act of kindness to do so.  Fighting to keep the person alive because you are not ready for their death is actually selfish and not a battle you will win.  

Wednesday, September 14, 2016

Sleep Confusion

On Monday, Lyn was exhausted when she got home from day hab.  She wanted to go to bed right away but Mom kept her up until just after dinner.  Even then, Lyn was in bed by 5pm.  About 6:15, she woke up and came into the living room.

Mom asked if she just took a nap.  Lyn looked at her as if she was crazy.  She turned around and walked back to the bathroom.  After several minutes, Lyn didn't come back and Mom checked on her.  Lyn was fine; just in the bathroom still.  When Lyn returned to her bedroom, Mom again went to check on her.

She had opened her window blinds and was making her bed.  When Mom asked if she was making it, Lyn denied it and said "I was going to sit on it."  Mom invited to Lyn to come into the living room to watch some Wheel of Fortune.  Lyn did and indicated she didn't know if it was morning or not.

Mom wrote me an email to let me know and included that her "heart was crying."

I was writing yesterday's blog post when she hit Send and I received the note right away.  I picked up the phone and called.  I call in the evening most of the time and I thought a call might help Lyn feel like it was evening.  We had a pretty routine conversation and she decided I was too tired to talk after a couple of minutes.  That's also normal.

Once the Sun set, Mom was able to tuck Lyn back into bed.

Tuesday, September 13, 2016

Off to the Play

On Sunday, Mom and Lyn went to see a performance of Auntie Mame.  She writes:

"Just got back from Little Theater where we saw Auntie Mame.  She LOVED it, all three hrs.  She laughed appropriately but I'm never sure if she caught what was said.  Probably not.  She clapped.  During one scene where the cast was trying to sit in very low couches, she laughed because it was funny.  About 30 minutes before it ended we heard thunder and rain.  HARD.  All I could think of was that I'd left windows open.  She was concerned about the dog.  We were going to stop and get something to eat but didn't.  Came straight home through a downpour.  On the way home she was smiling and thanked me three times for taking her.  In May, we'll go see Mary Poppins."

I'm glad that they're still able to enjoy such outings.

Monday, September 12, 2016

Steve Harvey Said

Both Mom and Lyn enjoy watching Steve Harvey, particularly when he's hosting Family Feud.  This weekend, Lyn was watching an episode.

Steve Harvey said "Tell me something a wife lets her husband do on his birthday that she usually doesn't."

Lyn called out "SPANK HIM!"

Mom had a choking fit trying to stifle her laughter.

Friday, September 9, 2016

Saying Good Bye

The wife of a family friend passed away last week as a result of cancer.

The family friend is the woman who served as Lyn's manager for years when she worked at Wendy's.  Though Lyn retired from work years ago, they have remained in contact.  Mom and Lyn still deliver homemade peanut butter cookies to her.  They delivered a batch this week.

Mom intends to attend the funeral, having made arrangements for Lyn to be with her respite provider.  Lyn has been crying off and on about the death of her friend's wife since learning of it.

At the same time, our Aunt is struggling with her own cancer and has a grim prognosis.  Lyn and Mom were taking about our Aunt and Lyn started crying again.  Mom tried to redirect her and assure her that she's being cared for.  Lyn revealed she wasn't upset about our Aunt.  She was crying over the deceased whom she claimed "to have loved my whole life!"  Mom again tried to redirect and assure her that she was no longer suffering or in pain.  The drama was high and Lyn wailed about how no one understands her worries.

Mom shared Lyn's grief with our family friend and they were both able to chuckle about it.  She was glad to know that someone was crying as much as she has been over her wife.  She also amused by the hyperbole in Lyn's grief.  Lyn's grief is real.  Her ability to express it is a bit garbled and it has evoked smiles as a result.

Wednesday, September 7, 2016

The Invisible Economy

Think of the families you know where an individual needs care due to a medical condition such as Alzheimer's or cancer or major disability such as Lyn's intellectual disability.  Regardless of the needs or ages of the individuals, these families share a common need.  They need a one or more care givers.

Caregivers are needed to administer medication and follow a medical plan.  They are needed to prepare food and may even need to feed the person for whom they provide care.  They may help bathe and groom the person.  They may help with toiling concerns.  They may even have to help transfer the person from one location to another such as from the bed to a chair or from a chair to the toilet or from the house to a car.

How much would you pay to have someone provide that assistance?  The average salary appears to be about $20,000.  In my area, a care giver makes about $29,000 a year according to glassdoor.  Hourly ranges on that link range from $8 to $13.  That doesn't seem like a lot me be when I think of the duties they perform.  But what if you can't afford that?

There are some social programs which help.  For example, Lyn has access to New Mexico's Disability Waiver program which provides her the services she receives.  Many states have elder care programs.  Even then, families may struggle and have to rely upon "informal caregivers."

Informal caregivers are those friends and family members who provide the care for individuals who need it.  They are mostly volunteers and not paid or trained professionals.  They may receive some benefits for the work they do by being granted access to or eventual ownership of assets but most do not.  Mom, for example, inherited the house after caring for my Grandma for 10 years.

How prevalent is the informal caregiver role?  In 2014, New Mexico reported 184,500 informal caregivers who accounted for 198 million hours of care.  While some may only provide a few hours of care a week, others are providing full-time, round the clock, 24/7 care.  The simple math reveals that 184,500 caregivers are putting in over 1,000 hours of care each and this equates to 40 hours of work for 26 weeks.  In Virginia in 2014, there were 740,400 informal caregivers who provided 793 million hours of care.  The average of 40 hours of work for 26 weeks is the same.  In 2008, the CDC reported there were more than 34 million caregivers nationally.  Their statistic only counts those providing care to someone aged 18 and older.  It overlooks those who provide care for minors who are seriously ill or disabled.  If we assign the average salary of $20,000 to all of these care givers and if we use the average of 50% work, then we're looking at $3,400,000,000,000 worth of unrecognized services provided which is about the GDP of Germany.  (Caveat: my math may be off but I think you get the point.)

We're asking all of these millions of informal caregivers to do what they do with little support or training.


Additional Information:
Family Caregiver Alliance

Tuesday, September 6, 2016

Aducanumab

If you pay attention to the news about Alzheimer's, then I'm sure you at least caught the headline that a new drug is showing promise in trials currently.

The drug is aducanumab and the test was a phase 2 study which has lasted for a year with a very small set of participants, just 165 people.  The test was designed to determine if the medication is safe for humans to take.  Of the 165 participants, some dropped out due to side effects such as headaches, build up of fluid on the brain or brain bleeds.  Reports on the number of drop-outs vary from 20 to 40 participants.  While the phase 2 study was focused on safety, the scientists determined that it was clearing the build up of amyloid beta from the participants brains as intended.

Phase 3 tests will focus on the effectiveness of the drug and will include a much larger number of participants.  Phase 3 tests have begun and will take at least 18 months to complete.  Patients will undergo monthly infusions and regular testing to determine if aducanumab helps to slow their cognitive decline in addition to clearing the plaques.  While each test cycle will take 18 months, there will be multiple test cycles which will continue into 2022.

We're still years from seeing this medication or any other readily available on the market.  However, if the phase 3 tests go well, we may be just 5 or 6 years away and that, my friends, may be a game changer.

*Fingers crossed*