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.