Thursday, June 30, 2016

Understanding Early On-Set Alzheimer's

Yesterday's post about the passing of Pat Summitt prompted a friend to ask  "How does Alzheimer's cause one to pass so quickly?"  The question referred to Pat's diagnosis of early on-set Alzheimer's in 2011 and her death a mere 5 years later.

Pat Summitt did not have a standard version of Alzheimer's.  She had early on-set.  Early on-set is the description used when a person is diagnoses at an unusually young age.  The cut-off is 65.  If you're diagnosed at 70 or 80, it is regular Alzheimer's.  If you're diagnosed at 30, 40, 50 or even 64, you've got early on-set.  Pat passed at age 64, having been diagnosed at 59.  Terry Pratchett was diagnosed in late 2007 and passed in early 2015.  He passed at 66 after diagnosis around 58.

There's a perception that early on-set progresses much more quickly.  However, the Mayo Clinic is now saying that perception is not really backed up by hard facts.  The belief is that early on-set patients only live for 7 to 10 years after diagnosis.  It is hard to validate these numbers because Alzheimer's is under reported as a cause of death.  Additionally, we may not be getting early enough diagnosis of the condition because people are able to cover for some of their forgetfulness and the rest of us can enable them to do so very easily.  When an elderly person starts showing signs that dementia may be in play, we kind of expect it and explain it as a result of their age.  When a younger person starts demonstrating dementia symptoms, we may find other reasons and overlook the true problem.  For example, the person may be diagnosed as having had a minor stroke or struggling with depression or an imbalance with their thyroid.  Early on-set is relatively rare.  Only about 5% of Alzheimer's patients have early on-set.  So, if there are 4Million with Alzheimer's in the US, only about 200,000 will have early on-set.

Another thing to keep in mind is that a person's symptoms are just an outward expression of the disease.  We have no idea when the deterioration in the brain really began.  We don't know just how advanced the disease is when the person receives their diagnosis.  While the disease can progress at a different pace for one person than another, that too may be a perception because we have not tried to identify two or more people who have developed the disease at the same time and are at the same stage for us to compare.  So, in Pat's case, she may have been finding memory workarounds for a decade before her diagnosis.

Changes in a person's abilities can be dramatic from year to year.  There are times when I think that Lyn's had her diagnosis for 5 years now and she should be further along in the progression of her disease.  The reality is that we may have just caught hers particularly early and we may have more years with her than the expected 7 to 10.  When we look back over the course of the year, we can see significant changes but there are more yet to come.

Here's an example of a woman with early on-set Alzheimer's.  We don't know how long she's been symptomatic but I found the clip interesting because they're trying to highlight the difference a year can make in this disease.



Ultimately, early on-set and regular on-set Alzheimer's destroy the brain.  While you can argue it is a disease of forgetting, it's more than that.  There is cell death and as much as 100 grams of brain tissue dies.  While the person may seem physically healthy and just dealing with memory issues, the body is actually "forgetting" how to heal, how to function, digest, breathe, and so on.  If the person gets ill, you can see a sudden intensification of the disease because the body no longer knows how to bounce back.  



Wednesday, June 29, 2016

Pat's Passing

If you looked at the US news at all yesterday, you heard that Pat Summitt, coach of the University of Tennessee's Women's Basketball program, passed away at the age of 64.  She had been diagnosed with Early onset Alzheimer's in 2011 and retired from coaching in 2012.  

Her diagnosis lead her to create the Pat Summitt Foundation which is focused on providing grants to organizations which research, treat or educate the public about Alzheimer's or provide support to individuals with the disease, their families or caregivers.  Working with the University of Tennessee Medical Center, the foundation is establishing the Pat Summitt Alzheimer's Clinic to provide Alzheimer's care and research.

While Alzheimer's was a part of her life for only the past few years, she seems to have approached it with the same intensity and dedication she exhibited in the decades of her career as a coach who gained legendary stature and respect.

Tuesday, June 28, 2016

Positive Support

My observation prompted Mom to write:

"You are right.  She accepts the brain is changing and her aceptance is a gift.  She has a positive attitude about it.  Part of that attitude is because she truly doesn't understand the scope of the changes, the ultimate end of the disease.  However, part of her positive attitude is because of the way she's treated.  When she's frustrated, you & I both remind her that we all are frustrated some of the time.  Every day when she forgets what she is saying or what she was going to do I tell her it's ok.  I turn it to how often I do the same thing.  When she spends hours sorting her beads by color then asks if it's ok if she uses them, I want to scream.  I take a deep breath and tell her that it's ok to use them.  When she's asked me the same question 5 times in one hour I calmly answer her 5 times in that long hour.  When she tells me over and over about construction someplace, I thank her for telling me since I didn't know about it.  She reminds me she can't decide what she wants for dinner and I remind her, as well, that I don't know either.  (I simply am tired of having to decide.)

As long as I can remain positive for her, toward her, then I believe she will continue to have a positive outlook.  But over the past 46 yrs I have tried to make each of you feel good about yourselves.  I tried to instill confidence in you and your abilities.  I tried not to dwell on any shortcomings because I didn't want you to grow up thinking you weren't quite good enough.  I didn't want any of you to get to age 50 and THEN realize that you are a good person.  I can't help but believe that I did succeed."


Monday, June 27, 2016

Acceptance

One of the interesting things I notice about my sister is her ability to accept.  She really never asks "Why?"  She doesn't engage in navel gazing or self pity.  She may not like a person or a situation but she doesn't question what caused her dislike or discomfort.

Since her diagnosis, we've heard her say on a number of times that "I'm just me!"  She knows her brain is changing.  She doesn't like it but she doesn't fight it.  She doesn't grieve or despair for herself because of the Alzheimer's.

This is a gift.

Thursday, June 23, 2016

Anisocoria

Lyn saw the ophthalmologist today.  Lyn's pupils are currently have a 1 millimeter difference.  The doctor took nearly an hour working with Lyn and would like to see her again in a week to see if there is any change.  He was able to rule out a number of things but didn't find a definitive cause.  He's diagnosed her with anisocoria which is just pupils of unequal sizes.

It turns out aniscocoria is fairly common.  It can be completely benign or something which is symptomatic of bigger issues.  The concern is that this has only just been noticed in Lyn and has never been noticed before.

So, we'll keep observing her.  If anything changes between now and next week's appointment, she'll be seen immediately.

Wednesday, June 22, 2016

Iggy

Recently, Lyn was watching Good Morning America as she was sorting beads.  Mom was in the kitchen when she realized that she couldn't hear the tv any longer.  Mom asked Lyn what was wrong.

"Her outfit is unappropriated so I hit mute."  She says "unappropriated" instead of "inappropriate."

Mom suggested that the television could be turned off.  "No.  I'm good."  Lyn continued to watch; not listen.  She turned the sound back on when Iggy was done performing.


Perhaps Lyn objected to the exposed bra.

Tuesday, June 21, 2016

Updates

Late last week, one of the day hab staff noticed that Lyn's pupils are different sizes.  Over the weekend. the difference continued to increase.  Lyn says she can no longer see things.  She says she can't see things in the sky or words in a book.  She's not in any pain or discomfort.  Lyn is now scheduled to see her ophthalmologist  tomorrow.

Late last week, Lyn and Mom met with the head the agency which will oversee Lyn's Community Access services.  It turns out that the service coordinator had completely dropped the ball.  When Mom had contacted the head of the agency, he had lined up interviews with three service providers rather quickly.  The interviews went well and they have selected a provider.  The three providers all had 10 years or more of experience.  They will start with Community Access next week.

Thursday, June 16, 2016

Drooling

Lyn's drooling is pretty much constant now.  While I was there last month, Mom told me about the time when Lyn was two or three and at the special pre-school.  Lyn was a near constant drooler then too.

The speech therapist asked for a meeting with both Mom and my father.  When she had them in her office, she proceeded to explain that she'd like to use a tool to help Lyn learn to control her drooling.  they agreed that Lyn needed help and asked about the tool and approach.  The therapist explained that the tool would help tighten Lyn's facial muscles through exercise.  The therapist asked that they not get upset when she showed it too them because it was only used for this purpose and with that, she reached into her desk drawer and pulled out a full sized vibrator.

They were surprised but agreed to let her try working with Lyn.  Lyn quickly learned to stop drooling.

As Mom relayed this memory to me, I howled with laughter.  I'm sure they were stunned and confused.  So, I asked, what would Lyn's current therapist recommend?  Do they still use vibrators for this purpose?  We resolved to find out.

Mom finally got a chance to ask Lyn's current speech therapist.  She updated me with the following:

"I remembered to ask about the drooling.  She said that some therapists do use a vibrator but it's a small device.  She does use a small one for clients who have oral problems such as not liking someone touching the face.  She said there's no scientific proof that using a vibrator around the mouth helps with drooling.  It doesn't tighten the muscles.  The ability to not drool is more of being conscience of doing it.  She's not in the "pro" crowd for doing anything to stop Lyn's drooling.

Lyn then piped in and said "I can't help it.  It's just me."  LOL"

Tuesday, June 14, 2016

Lisa

Last week, Lisa Cordova passed.  Lisa was the client at Lyn's day hab who was wheelchair bound as a result of her Alzheimer's.  Towards the end of her life, about all she could say was "Happy birthday." Lisa's family deeply cared for her and provided her with excellent care her entire life.  She was active in the community and held a valued place in it.

Lisa and Lyn had known each other as a result of Special Olympics and church.  They went to the same high school but were there at different times.  Lisa was older than Lyn by 10 years.

I remember Lisa as a kind and happy woman.  She was quick to smile and took genuine delight in others.

Monday, June 13, 2016

Pride

On Saturday, Lyn attended Albuquerque's Pride parade.  She has attended for the past several years and completely enjoys herself.  The parade is a bright, colorful and happy event.  Lyn caught a purple football and whistle this year along with several strands of beads.  The people who attend enjoy themselves and there is a great festive air about it as you will find in so many other Pride events around the world.

Yesterday morning, we woke up to the devastating news of the massacre in Orlando.  Mom's having to keep an eye on the news today and for the foreseeable future.  We don't want to have Lyn confronted by this news if we can help it.  It will upset her for days unnecessarily.

Lyn can't do anything to change America's approach to guns.  You and I can.   We can help change the dialogue because praying for the victims of violence is not enough.


Wednesday, June 8, 2016

What's the Delay?

Mom's been trying to get Community Access for Lyn for months. She interviewed an agency and several providers there, picking one that she and Lyn "clicked with." The budget was approved. Hours were allotted and then there was no provider available to start with Lyn. It has been a series of delays.

Last night, Mom wrote:

I am beginning to think that we'll never get community access. Last week, I called the coordinator and she said she had a provider. The provider supposedly worked with this population and has one class left to take then she needs to sign a contract. So, she "probably" would be ready to work in a couple of weeks. The coordinator was going to have the provider call me and we could set up a meet/greet.

That was last Wednesday. On Friday, I emailed the coordinator and asked if she'd spoken to the provider. On Monday, she replied that they were playing phone tag but was sure she would connect on Monday. Still no call from either one of them. I'm going to wait until Thursday and then email the owner of the agency and copy the coordinator. It looks like this isn't going to happen and I will find another agency if they can't get a provider within a week. 

Perhaps the provider changed her mind. Perhaps the coordinator hasn't spoken to her. Perhaps they can't do this.

Lyn refuses to go to dayhab on Tuesday or Thursday since the ISP meeting was held. At that meeting, it was decided that she would only go on Monday, Wednesday and Friday. She doesn't seem to understand that while waiting, she could go to dayhab each day. Actually, it's better because she seems overwhelmed when I pick her up.

Tuesday, June 7, 2016

Leaving a Support Group

Mom attends a monthly support group in person which seems to really help.  These gatherings are facilitated and the conversations focus on how people are feeling, where they're at in the care of their person with Alzheimer's and suggestions to help the participants move forward in a constructive manner.

I have not joined an in-person group.  I'm a bit removed from Lyn's care and also need to manager my obligations to my own household.  However, I'm part of an on-line support group.  Mom was too for a while.

Lately, I've been thinking of disconnecting from the group.  I've been keeping an eye on it for several years now and find I rarely post.  My posts are infrequent because the majority of the posts that cross my feed are focused on the individual's sense of guilt or anger.  They feel guilty about a nursing home placement, about lies they tell to smooth things over for the individual with Alzheimer's, about feeling like they're not doing enough to care for the person.  The people who post may be enraged over a sibling's behavior to (not) care for their parent or about something the person with Alzheimer's has said or done.  Sometimes, there's so many posts dealing with guilt and anger that I just have to ignore that feed for a day or two because I'm afraid I'll respond with something unkind like "It's not about you!"

Why would a blunt statement like this be unkind?  Well, in a lot of ways, it IS about them.  They're the ones washing excrement off the wall or hearing a beloved parent tell them they don't matter.  They're the ones being financially harmed by the care of their parents or emotionally harmed by the actions of their siblings.  They're the ones seeking support and understanding.  Perhaps they can't get away to join a structured, in-person group.  Perhaps the online community is all they can consistently access.  Perhaps the "I'm sorry" statements or virtual hugs really help them feel better.

When I joined a couple of years ago, there were two or three active members who served in the role of moderator and excelled at it.  As is the nature with such groups, their situations have changed and they have moved on.  Other members have come or gone as well.  The group has a different tone to it now.  There was always posts centered on anger and guilt but there were more posts seeking advice or sharing a funny or tender moment.

I'm not contributing much and I definitely am not seeking support from the other members.  I've left other on-line communities before and changes in tone or group composition are part of what happens with any community.

Yeah... I think it is time for me to move on.

Monday, June 6, 2016

Chillin

Lyn was sitting in one of the living room chairs sorting her perler beads.  Nikka was stretched out under the ceiling fan.  Lyn asked "Hey Nikka!  Are you chillin? Chilling like a villain?"  Nikka didn't twitch.  Lyn burst out with a belly laugh and then went back to her beads.

Not sure what prompted that but I would have laughed too.

Thursday, June 2, 2016

Dealing with Food Issues

Lyn currently wants to eat the same thing day after day.  If she had her way, she would go out to eat daily and she would order one of two dishes.  Either she would order chicken fettuccini alfredo or she would order a bacon cheeseburger with only mayo and a side of ranch to go with her fries.  She might, just might think to ask for Mom to make spaghetti.

We've known for some time that her food preferences seem to be changing.  Some days she will say "I've never liked..." or she may say "You know, I've always liked..."  Yet, when you ask her what she wants, the answer is "I don't know" or she gives a bit of a scowl and a shrug which conveys much of the same thing.  They really are not changing.  She just doesn't remember.

Such issues are common in Alzheimer's patients.  Food issues can drive a care giver crazy trying to guess what to fix.  So, if I may, this is unsolicited advice but I hope it is of some use to someone who is faced with the challenges of feeding an Alzheimer's patient.


  1. Decide what you are going to provide them to eat.  Alzheimer's patients really don't remember what they may or may not like.   Their statements of "I've never liked..." or "I've always liked..." are covering statements.  They don't know what options are available to them.  If they look in the pantry or the fridge to see what options are available, they may not be able to recognize that the cheese, the bacon and the ground beef are components to a dish they like.  They may just see "stuff."  If you list of three choices of "Do you want A or B or C," they may become overwhelmed by their options.  So, remove the burden of those choices from them.  Say "We're having meatloaf for dinner tonight."  
  2. Provide them with healthy choices.  This may seem like obvious advice.  It takes a bit of knowledge and logic to decide you should not eat a cookie because you're watching your sugar intake.  This kind of thought process is extremely difficult for the Alzheimer's patient.  They may see the cookie and just want the cookie.  The impact on their health is not in their capacity to determine.  
  3. Recognize that an insistence on eating the same foods is an effort by the Alzheimer's patient to have some control over their life.  They really do know their brains are changing and this causes anxiety and a desire to be able to have some control over things.  They know that they should know what they want for dinner but they just can't remember what they like or want or even what they should avoid.   They may limit their selections to the few things they can remember to ask for as a result.  They're not trying to be difficult.   
  4. Control portion sizes.  Alzheimer's patients drop weight as a result of the disease.  Their body is not as efficient at digesting food and making use of the available nutrients.  As a result, you may be inclined to give the patient a large serving in the hopes that sheer volume of calories will help stop the weight loss.  It won't.  You will start to realize that no matter how much you succeed in getting the person to eat they still will loose the weight.  Additionally, you may find that the person has no appetite because they forget what hunger is and what it feels like.  Instead of getting upset or frustrated at how much food is being wasted, give the person smaller portions so that if any is not consumed, less goes into the trash.
  5. Have liquid alternatives on hand.  The Alzheimer's patient may not be willing to eat but they may be willing to drink a meal replacement shake.  While it may not be the preferred method of providing sustenance to the person, they may find a shake to be an acceptable alternative from time to time.  They may even think they are getting a special treat.
  6. Roll with the changes.  Food is not a place for a battle of wills.  You will not win.  You cannot force a person to eat.  The Alzheimer's patient is not being a difficult or picky eater by choice or doing it to frustrate or spite you.  It may feel deliberate.  It is not.  If you offer them something they don't like, just apologize and move on.  Tomorrow is a new day.  If they request a particular dish, try to make it.  Otherwise, don't let yourself get caught in the challenge of always trying to know or guess what will be considered a liked food today.  Chances are you'll get it wrong.  
  7. Be willing to intervene.  There are going to be times when you're going to have to say "No" or "Stop."  You can be polite and respectful but you may have to intervene for the safety of the Alzheimer's patient or another individual.  The Alzheimer's patient may not recognize that food they've taken out of the fridge is not safe to eat.  You may need to make sure that the food they have access to always is safe to consume.  The Alzheimer's patient may not remember to turn off the stove if they've tried to cook.  You may need to take steps to prevent them from turning it on such as by removing the knobs.  You may need to actively prevent them from overfeeding the dog by giving the dog all of the food they don't eat.  You may have to remove their plate for them right as they finish under the guise of being helpful.  If they do succeed in feeding the dog, at least you have hopefully reduced the portion on the plate so that even the scraps going to the dog are reduced.

Wednesday, June 1, 2016

Today's News

Today's news is rather interesting.  Amyloid Beta may not be a bad guy afterall.  However, it is a case of good things are done in moderation.