Monday, October 27, 2014

Two Week Hiatus

I'm taking a short, two week hiatus from Dementia Be Damned.

I've mentioned before that I've spent time as a foster parent.  I may even have mentioned that my youngest is my former foster child who we adopted when reunification with the birth family was no longer possible.  I believe I've noted similarities between my child's PTSD based behaviors and Lyn's anxiety driven behaviors.

What I've not previously posted is that my child has abuse related memories which are triggered by the seasons.  When you experience trauma and a memory is laid down by your amygdala, you may react to the sensory stimuli which you experienced when the event happened when you experience the stimuli again in the future.   Imagine if you were in a bad car accident.  You might find yourself having an anxiety attack when you next come to the intersection where the accident occurred.  You may find ways to avoid that intersection because you associate it with a terribly frightening moment and you may fear another accident in the same location.  Well, the same basic thing happens to abused children.  However, their sensory stimuli may associate the event with a season because they may not even know what a calendar is yet.  They may recognize that the very bad thing happened when the Christmas tree was up or that the very bad thing happened when the swimming pool was in use.

Late October to mid-November is the hardest time of the year for my youngest.  We're 6 years out from the events that made Fall a time of fear.  My child is having a harder time this year than last.  The good news is that kiddo does a great job at school even during this time of year.  The bad news is that it all comes out at home.  It is taking more from my husband and me than it has in a very long time.  Because of that, I am going to take this week and next week off from blogging.  I need to focus on my kids; particularly my youngest.

Thank you for your understanding and your patience.

Friday, October 24, 2014

Tending to Her Teeth

For the past couple of weeks, Mom has noticed that Lyn's teeth are not very clean after she returns from brushing them.  If Mom questions Lyn, Lyn gives a hostile response.  Mom would send her back and ask her to do it again.  Lyn's responses indicated that she was covering her inability.

After a few times, Mom realized that Lyn wasn't using her electric toothbrush.  When asked about it, Lyn told Mom that the toothbrush was making a sound and she didn't want to use it any more.  Mom checked the toothbrush and it was working fine.  "No!  That sound!" Lyn was emphatic and the sound was just the regular operation of the device.  Lyn no longer remembered how the toothbrush was supposed to sound and she was trying to manage with just a manual toothbrush.

Mom had a dental appointment scheduled this week and the doctor asked how Lyn is doing.  Mom told him of Lyn's reduced ability to bush her teeth since he last saw her a few months ago.  He went to his office and came back with an Oral B electric toothbrush with Smartguide.  The Smartguide will tell Lyn where to brush and how long to brush here.

The hope is that the automated guide will give her the additional assistance she needs.  There will come a time when it no longer works for her and Mom will have to brush her teeth for her.  However if this new toothbrush helps, then it will help her keep this small independence a little longer.

Thursday, October 23, 2014

Increase the Risk

In today's news, I read that contracting herpes simplex increases the risk of developing Alzheimer's in later life.  The most commonly recognized risk factors are age, genetics and family history.  However, I regularly read speculation on other interactions which may increase the risk of developing the disease.

The list now includes:

The good news is that aluminum has been removed from the list.

What this tells us is that Alzheimer's is a very complex disease involving multiple systems in the body.  Each one of those risk factors can be the focus of scientific investigation which may lead to another piece in the treatment puzzle. Some of the factors listed above can be mitigated by changes in how we care for ourselves.  Some we cannot change.  While I can work to reduce my BMI, changing my gender at a genetic level really isn't an option.

Wednesday, October 22, 2014

Respite Reduction

The sun is setting earlier in the day and Lyn's Sundowner's has come back with a vengeance.  On Monday, when her respite provider brought her home after dinner, Lyn was very upset.  There was nothing in particular that her respite provider or another person had done to upset her.  She was upset because she wasn't sure how to express her fear and anxiety that they were someplace unknown or that they were lost.  She just wanted to be home where she feels safe.  It was her respite provider's first real exposure to Sundowner's.

Mom and I had anticipated that this would happen and knew it was a matter of time.  Mom had suggested that we may need to reduce the number of evening hours Lyn is out with respite during the shortened days.  When Lyn came home Monday, Mom made the suggestion to her respite provider and the suggestion was readily accepted.  It is not that we want to reduce Lyn's time out and about.  It really comes down to asking if it is the right thing for her to be out if she's just going to be anxious and acting out of fear.  The Saturday respite hours will remain in place.

When Mom spoke with Lyn about it, she asked if Lyn knew what Sundowner's is.  Lyn did not.  Mom explained that when the sun sets the lights change and it seems like you are in a different place.  Lyn said "That's what I see every night."  Mom talked to Lyn a few minutes more and told her about the time that they were on the way home from dinner with Grandma many years ago and Grandma said "I hope you know where you're going."  Grandma didn't recognize that they were just a mile or two from home and thought they were in Santa Fe.  Lyn found the story funny though she didn't remember that event.  Mom explained that because Lyn gets anxious in the evenings, she didn't have to go out.  Lyn relaxed and said that was what she wanted.

Lyn has struggled with Sundowner's for years.  However, she's reacting to it much more strongly than she did even a year ago.  There are tears that are now accompanied with verbal lashing out and what can only be described as hatefulness.  It is all fear, really.  We don't want her to feel so unsafe that she physically lashes out.  She has not and we would like to avoid that.

We don't know if she will be able to resume more respite hours when the seasons turn and the days grow long again.  She might.  However, her brain changes over the course of 6 months is significant and we're at a point where it is very difficult to predict how much she can tolerate that far out in the future.  So, for now, her respite will be limited to daylight hours.

Monday, October 20, 2014

Reminiscence Therapy

Reminiscence therapy is the use of life histories to improve a person's psychological health.  Using pictures, video clips, objects or the written word, an individual can evoke a deep memory from an individual with dementia.  In order to help trigger the memory, the stimulants should be representative of or from the time of the individual's younger years.  For example, while you may not have pictures of the person as a child, pictures taken in the area where and from when they grew up may be familiar enough to cause a memory to surface.  During a therapeutic period, the person may not talk about the contents of the stimulus; but may discuss other topics which are connected emotionally for that person.

Reminiscence therapy benefits a person by getting them communicating and focusing on positive associations.  Making a connection and sharing their thoughts helps the individual feel valued.  The conversation itself can be interesting and funny and who doesn't like a good conversation?

Lyn has several photo albums that she used to go through fairly regularly.  While she doesn't much anymore, she will go get one and sit with you to look through it.  Looking through pictures of Albuquerque from the time of Lyn's life makes me realize that despite the growth of the city, much of it still looks the same or has enough of the same flavor that picking out the age of a picture can be a bit of a challenge.  Sometimes, we have to look to the type of photograph to help us determine the age of the image.

When you sit with Lyn and go over her photos, I find she doesn't make the connections that other dementia patients may be able to make.  For example, she can't tell you what movie was her childhood favorite or tell you about the time that Mom took us to see Star Wars when it was in the theaters.  A picture won't cause her to think of a meal, a song or even the seasons.  She might, on rare occasions, think about someone who is not pictured.

This difference is really nothing new with her.  While she enjoys music, I cannot remember a song that she felt a strong emotional connection.  I really think her inability to express connected memories is a result of how her memories were stored through out her entire life and not a result of her Alzheimer's.

Friday, October 17, 2014

Thursday, October 16, 2014

A Question of Guilt

At some point, Lyn will no longer be able to tend to her personal needs.  She won't be able to change her clothes, feed herself or clean herself.  She won't be able to get up and may become bedridden.  All of these changes are common symptoms of the late stages of Alzheimer's.  When that time comes, Lyn will need care providers who are able to lift her, turn her, feed her, clothe and clean her.  Because of Lyn's size, Mom may not be able to do it all herself.

A comment on yesterday's post raised this concern and the very real possibility that Lyn will need to be placed in a care home.  The goal is to keep Lyn in her home environment for as long as possible.  Her case managers have spoken of making in home renovations such as a walk-in tub to make her care as easy as possible for as long as possible.  While that goal guides decisions about Lyn's in-home care, the reality is that Lyn will very likely need full-time nursing care.  Mom and I are cognizant of this need and are emotionally prepared to make the decision when the time comes.

The comment posited that we may feel guilt in placing Lyn in a nursing home.  It raises a good question.  Will we?  Mom and I discussed this topic last night as a result of the comment.

When my Grandmother's care exceeded the capacity for her to be cared for in-home, Grandma was moved to a small private nursing home where she lived until her death.  She received very good care.   It was the right place for Grandma and we'll always appreciate my Aunt suggesting the facility.  In thinking back on that time, I don't remember there being expressions of guilt in moving Grandma to a nursing home.  Mom confirms that there was no sense of guilt felt or expressed.

As we continued the discussion, we found we were both expressing much of the same sentiments.  When Lyn is placed in a nursing facility, it will be with the recognition and knowledge that her care has exceeded what can be provided to her in the home.  We will make sure she's in a good facility and Mom anticipates visiting her regularly if not daily.  Neither of us expect that we'll feel guilt or question the decision to move Lyn because our goal is to provide her with the best care we can provide.  If that means that others have to do the heavy lifting then we line up the resources Lyn needs.

If we were just placing Lyn in a nursing home because we were tired of caring for her, then we'd have reason to feel guilt.  If a nursing home was a matter of convenience and not need, then we'd have reason to feel guilt.  Moving her when her care exceeds our abilities is no reason for guilt.

Mom and I both have participated in Alzheimer's support groups.  Mom has attended in real life as well as on-line.  I participate on-line only at this time.  Neither of us have understood the feelings of guilt that are commonly expressed by other participants.  When we hear of the lengths to which others have gone to avoid a nursing home placement, we see nothing to fault with their decision to finally place their loved one in a nursing home.  The decisions are not easily or lightly made.  While it may not be an easy decision for us too, I do believe we will accept the decision peacefully and not beat ourselves up over it.

Wednesday, October 15, 2014

Walking Away

In today's news, a famous British sportsman, Ian Botham gave an interview in which he talks about his father's dementia and his decision to stop visiting his father months before his father died.  He states that it was horrendous to see his father's diminished capacity and behavior changes as a result of Alzheimer's.  He asks that no one judges him unless they've been in his shoes.

Lyn's not violent.  She can be a brat.  Lyn's capacity is diminishing on a daily basis but she's not yet "a shell" of a person.  It is painful to see the changes some days.  Her care is sometimes a heavy burden for Mom.  The changes in her are definitely having an emotional impact on us all.

Mr. Botham's father passed in 2005.  It is my hope that the care we provide dementia patients has improved some as our understanding of their experiences is improved.  His father's violence would be traumatic to experience.  His father was in a nursing home and being tended to by the staff there.  However, I'm not sure, even then, that I could just walk away and have no more contact with my loved one.  The thought of that just seems like abandonment to me.

Tuesday, October 14, 2014

Petri Alzheimer's

Rudolph E Tanzi is the Director of the Genetics and Aging Research Unit at MassGeneral Institute for Neurodegenerative Disease at Massachusetts General Hospital.  He and his staff have been researching the causes of Alzheimer's Disease.  This week, they announced that they have developed the ability to grow human neurons with the genes for Alzheimer's in petri dishes.

The neurons organize themselves in the grid-like structure found in the brain.  Those neurons with the Alzheimer's genes also form the plaque tangles which are a hallmark indicator of the disease.  The ability to grow neurons in a petri dish will hopefully allow researchers to test potential drugs for treating Alzheimer's more quickly.

Dr. Tanzi and his team are not the only ones growing neurons in petri dishes.  His team at MassGeneral worked with embryonic stem cells which have the ability to become any cell needed.  However, a team of stem cell scientists led by Tracy Young-Pearse have converted skin stem cells from individuals with early on-set Alzheimer's into neurons and grown them in petri dishes as well.  Both Tanzi and Young-Pearse teach at Harvard in addition to directing their respective labs.

The goal to create collections of human neurons to directly study or use in drug testing is not a new concept and has been under work for several years.  In 2012, the University of California, San Diego team led by Larry Goldstein had announced they had succeeded in converting skin cells to neurons for petri growth.  From how heavily Tanzi's team is receiving coverage this week, you'd be hard pressed to know that this announcement is not the first of its kind.

Will Tanzi's approach be substantively different or a game changer in ways that the findings by the labs run by Young-Pearse or Goldstein have not?  Only time will tell.

Monday, October 13, 2014

Clothing Issues

For the past couple of weeks, we've noticed that Lyn wants to wear the same thing again and again.  If Mom doesn't intervene, Lyn will wear the same pajamas every single night and the same clothing each day.  She gets irritated if Mom tells her to change into a fresh set of clothes.  Fortunately, if Mom can convince Lyn to put the dirty clothes in the hamper, she'll leave them there and get a different set.  However, each day, she asks about the set she wants, checking to see if they are available for use.

This is not unusual with Alzheimer's.  Making a decision is hard.  Patients will revert to the familiar as the easiest option when choices are at hand.

This is not a surprising change to see in Lyn.  At this point, she's still cooperative with changing even if she's not happy about it.  Additionally, she's still able to get dressed on her own for the most part.  She'll get upset if her bra strap is twisted as she puts it on.  When that happens, she asks Mom to help her because "It is faded!"  She now uses "faded" instead of "twisted."  We're honestly glad that she can still put on her own bra and get the rest of her clothes on independently.  We'll take that for as long as it lasts.

Thursday, October 9, 2014

Hilarity for Charity

Next Friday night, Seth Rogan will be hosting his third annual Hilarity for Charity event.  Hilarity for Charity is a fundraising comedy concert which supports the Alzheimer's Association.   Seth and his friends in the entertainment world put on a big show.  This year's theme is the Prom.  There's also an online fundraising component with Omaze this year.

If you enjoy Seth Rogan's work, you may want to check out some of the Hilarity for Charity videos.  While you're at it, consider supporting your preferred Alzheimer's charity.

Wednesday, October 8, 2014

New Glasses

Her new glasses have arrived and she's happy.

There are days when any smile, no matter the reason, is worth the effort.

Tuesday, October 7, 2014

The Nobel and Your Internal GPS

In 1971, scientist John O'Keefe and his student Jonathan Dostrovsky discovered neurons in the hippocampus which fire in connection to a specific location and called them place cells.  In 2005, Edvard Moser and May-Britt Moser discovered another type of spatial cell in the entorhinal cortex which they named grid cells.  Grid cells allow the body to know its place in space.  Together with the place cells, they allow the brain to maintain an internal map of where your body is in Euclidian space.

Essentially, your brain has its own GPS which maps out the environment around you.  The work by these scientists answers the question of how we can successfully move through our environment in all its complexity.  Their work has been recognized by the Nobel committee who awarded them the 2014 Nobel Prize for physiology or medicine.

So how is this research connected to Alzheimer's?  Individuals with Alzheimer's or other forms of dementia may not recognize where they are even if they are in their normal environment.  We see this pretty clearly in Sundowning.  The light changes and the environment looks different.  The individual doesn't recognize where they are and exhibits increasing anxiety.  As the disease progresses, the individual can literally become lost when they don't recognize the space around them.  They may wander away because they're looking for home.  If we can understand how the brain's GPS is supposed to work, it may help us understand what is happening when it no longer works.

Amazing work!

Monday, October 6, 2014

Craft Project Pride

One of the activities that you can provide to an individual with Alzheimer's is a selection of the pvc pipes and connectors.  The individual can put them together in any formation that they want.  Later, you can give them the creation and ask them to take the pieces apart.  It is a good activity because their hands are in use as they are working to build or take apart the connections.  For someone with advanced Alzheimer's this also allows them to feel valued because they're helping you with a task.

At day hab this week, Lyn participated in a craft project that used pvc pipes and pvc pipe connectors. She worked with one of the staff to use the components to make something more permanent than the activity described above.  She was so proud of her work.  She was able to bring it home and decided she needed to give it as a gift to our Uncle.

Our Uncle graciously accepted the gift.  He promised to take it him and use it right away.  You can see how happy the exchange made her.

Have you guessed what it is yet?  I'm am glad she told me because otherwise I would never have guessed.  She made a sprinkler for him to use when watering his lawn.

Friday, October 3, 2014

Failing Eyesight

Lyn had here annual eye exam earlier this week.  Last year, she ended up in bifocals.  This year, the news was mixed.  Her left eye has shows very little visual degradation while her right shows substantial degradation.

Lyn was cooperative and wanting to be helpful during the exam.  However, she would always say the last option that was presented to her when asked if one view was better than another.  Mom noted that Lyn's highly suggestible and the approach for the exam was changed to rule out Lyn's verbal responses.

A new pair of glasses has been ordered and should be in her hands in a week.  She wanted a set of larger frames.  I wonder if she's thinking that a larger frame will improve her vision.  I chuckle at Mom's description of Lyn trying to pick out frames and consistently being drawn to the most expensive pairs.  Each item she chose was from a luxury brand like Coach or Armani.  This is pretty consistent for Lyn and I'm glad to see that hasn't changed yet.

No matter how much I read about Alzheimer's, I still find new information.  I was aware of the degradation of a person's vision and how you can give yourself a feel for it by holding your hands up to your eyes as if they were binoculars.  I was unaware of the uneven loss of eyesight resulting in a person's blindness in one eye and highly constricted vision in the other.  I don't think Lyn's completely blind in her right eye yet.  However, it appears she's going that way.  The video below is a good and quick explanation of how a person with dementia is impacted by a reduced visual field.  Take a look.