Saturday, July 30, 2011

The Last Metro Stop

At the end of June, Lyn and Mom came for a week's visit. They arrived the day after Lyn was seen by her primary care physician and the word "dementia" was first uttered. We decided to try and keep our week as close to their normal visit as possible. This means that we try to have an activity scheduled for each day.

Towards the end of the week, we had scheduled a trip into the National Zoo in DC. We always enjoy the various exhibits and it was our first time to see the Asia Trail which had opened since our last visit. We metro in, walk around the zoo and metro out. Other than my children being crabby, the day was going pretty well until we got to the Woodley Park Metro stop to head home.

I noticed a long line of people waiting for the elevators at one end of the block. So, we continued on down to the main entrance where we have always taken the escalators down. If you're not familiar with the Woodley Park Metro station's escalators, let me explain a little about it. There are two escalators to get you in or out of the station. If you're going in from the street, you take a normal length of escalator down to a landing and then get on an extremely long escalator that takes you down to the metro level. According to Trip Advisor, the metro level at this station is 140' below ground. The longer of the two escalators is 204' long and set at a 30-degree angle.

Here's an image of the long Woodley Park Metro Station escalator in question. This image was taken by photojournalist John Schreiber. Mr. Schreiber has kindly given permission for me to use his image which I found on his blog. Check out his amazing work. It is well worth the detour.



On this day, we got to the first escalator, the normal length one and found it was not working. We marched down the stairs without incident. When we got to the landing, we realized the second, longer escalator was also not working. We should have stopped and returned to the street. We should have gone back up the block to the elevator and waited in line. We didn't. We made a very big mistake.

I took ahold of each of my children and started maneuvering them down the 342 steps in front of us knowing that Mom had Lyn. Because of the disorienting scale of the path we were on, my children and I focused on our feet and just kept putting one foot in front of the next. We were early enough in the afternoon that we were not in the press of the afternoon commute. A part of me realized that Mom and Lyn had fallen behind but I didn't stop. Even then, my little trio was passed by the more experienced Metro patrons. Within a few minutes, we were at the bottom and looked back up to see were Lyn and Mom were in their trek down.

From my perspective at the bottom of the stairs, I realized they were about 1/3 of the way down. Mom was in front and Lyn was clutching her shoulders. I could tell Lyn was sobbing and Mom was talking to her with each step. Later, Mom described to me the events that I missed.

Mom and Lyn started down the escalator right behind my children and me. Lyn took the lead. When they were about 1/4 of the way down, Lyn had a full panic attack. She started crying and couldn't take another step. She stood there shaking and clutching the railing. Mom came around to stand in front of her, all the while, talking to calm her. A regular Metro rider hustled past and then turned around about 5 steps lower and asked "Ma'am, do you need some help with her?" Mom thanked her and declined the offer.

Slowly, they crept down the escalator. With each step, Mom had to tell her that she could do it. She needed reassurance down the rest of the way. Mom kept up a constant stream of encouragement. Lyn collapsed against Mom when they got to the lower landing. We all tried to assure Lyn that she was brave, she did a good job and that it was over.

Lyn was exhausted. Once seated on the train, she retreated within herself. When we arrived at my home, she shakily climbed the stairs to the bedroom and slept for a couple of hours. It was as if a light had gone out in her and it took 2 days to start to flicker back on. We noticed that for the rest of the visit, she struggled to come down the stairs in my home.

We don't know if Lyn will ever return to my home. We do know that this trip included Lyn's last Metro stop.

Thursday, July 28, 2011

Griz

Over the years, my family has had a number of dogs. The dogs have been good with Lyn and she is gentle with them. While the dogs would romp with the rest of us, they consistently sit near her pretty calmly and let her pet them. We see the same behavior with my dogs who don't live with her. Even my bouncy 2 year old, still a puppy at 100 lbs, Bernese Mountain Dog responds to her with attentive gentleness. We've always said dogs could tell that she was different

There was Zeus the black Peek-a-Poo, Baby May the fawn Pit Bull, Mojo the fawn Pit Bull, Thor the third fawn Pit Bull, Trouble the little black mutt, Daphne the Springer Spaniel and Brutus the black Lab/Dane. Finally, there was Griz. Griz was a red Aussie.

Griz came to Mom and Lyn from my Mom's brother. When Griz was weaned from his mother and old enough to be placed elsewhere, Mom and Lyn were ready for him. Griz was a bumbling ball of fuzz when they got him. As with all puppies, he was cute, cuddly and chewed on everything. As Griz grew and his personality came out more, he and Lyn developed a relationship she didn't have with any of the previous dogs she'd loved. There was just something special in this relationship.



Griz was a vocal dog. He'd carry on whole conversations with you. When you got home, he'd tell you about his day. When he wanted a treat, he'd let you know in no uncertain terms. When he got to talking, he'd talk more to her than to anyone else. The more he talked the her, the more she'd get to laughing. When she laughed, he had to get the last word. Griz would get her laughing to the point of crying on a regular basis.

Griz passed away last year. Lyn declared "No more dogs! I can't do it." She's stuck to that for the past year. She loves dogs. She loved Griz most of all. No other dog will do for her.

Tuesday, July 26, 2011

Mom's Angry

Update:

  • Blood test has revealed a minor hypoactive thyroid.  Thyroid hormone replacement therapy has begun.
  • Urinalysis has come back normal.
  • MRI result is "normal."
  • EEG has been done.  Results have not been shared with Mom yet.
  • Appointment with the neurologist has not yet been scheduled. 


Mom writes:
Another frustrating evening.  It’s only 11:30pm, I am tired but unable to sleep.  When Lyn went to take her bath tonight she seemed a bit irritated.  Don't know why.  When she came back in the living room she said, "I was thinking of something and now I can't.  I wanted to say something and I can't.  I wanted to do something and I can't."  She was mad and I wanted to cry.  I told her that some days are going to be like this and I did't want her to get mad about it but just try to think of something else or come tell me & I'll try to help.  I said this is why we'll see the dr to try to figure it out.  She just looked disgusted and went to her room.

On Friday I got the report regarding the MRI.  It was a pre-printed form and at the bottom was written “MRI-normal” and nothing more.  It’s been some time since I was instantly angry then glad then angry again.

Her brain isn’t normal!  Otherwise she wouldn’t be like she is.  What about all the white areas around both spheres?  I was glad there were no tumors etc.  I know I must wait for EEG results which I believe will tell more.

I remember about 25 yrs ago when she had an MRI.  I was told that the frontal lobe showed damage and that’s why her speech was so delayed, accounts for some of the retardation.  No way to find those records.

Over the weekend and today I reached out to 2 people whom I respect and trust very much.  I have questions and felt either would help guide me.  Of course, I should have known better.  One never returned my call & the other said “I keep you in my prayers.”  It reminds me of the 10 yrs I cared for mother.

When I began caring for Mom everyone said, “This will be very difficult on you.  I’m here for you, for moral support.  If you just need to talk I’m here for you.”  Well, didn’t matter if it was one of her sisters, sister-in-law, her cousin, one of my brothers or a sister-in-law when I reached out I was rebuffed.  “Sorry, I can’t talk now,"  "I don’t want to discuss it" or "It is your problem.”   However, these were the very ones to criticize me quickly.

This will be the same thing.  I will just have to remember NOT to reach out to anyone but my other daughter.  Poor dear, she’s so far away and has her own family I hate to burden her, although she will disagree with me on this one.

(And I do.)

They've Noticed

When Lyn and Mom visited at the end of June, I noticed that it took Lyn at try or two to stand up from a seated position.  I'm not the only one to have noticed.

Mom indicates that Lyn now needs assistance to maneuver the stand up, sit down, kneel routine at church.  The family who sits in the pew behind has noticed as well.  They recently asked Mom "How is Lyn doing?" because of how unstable she seemed during Mass. 

Yesterday, Lyn had her regularly scheduled appointment with her speech therapist.  Afterwards, the therapist expressed concerns about the decline in communication skills.  Their normal routine is to start the session getting caught up from the week before.  The therapist asks Lyn questions like "What did you do this weekend?" and "Who did you see?"  Lyn used to provide great details about her activities and what Mom was doing.  Mom and the therapist joked that Mom can't have a private life because Lyn makes sure there's not a skeleton in any of her closets.  Well, the catching up conversations are not as detailed or coherent as there were even two months ago.  Lyn is not able to maintain the flow of the conversation and is forgetting what she did early in the week.  She's not completing sentences and having more long pauses between thoughts. 

I've noticed this as well when I speak with her on the phone.  I usually call a couple of times a week.  Since Lyn's a social butterfly and has an activity scheduled each day, I speak to Lyn at least once a week.  In last night's conversation, for example, she was very concerned about my younger child who has been recovering from bronchitis.  She asked about my little one and was releaved to hear that my child is on the mend.  She asked what the other members of my household were doing.  This is standard introductory parts to our conversations.  Normally, she then tells me what she did that day or what she plans to do tomorrow.  Last night, I kept quiet to see what she would say.  It went like this "That's good... Yeah... Uh... Yeah... Yeah... hmmm...   hmmm... "  That was all her over the course of a minute in which I was saying nothing.  I asked if she wanted to tell me anything.  "No."  She then turned away and called to Mom "Here!  She's got to go!"

The "Here!  She's got to go!" always cracks me up.  I didn't have to go.  She was done with me.  It doesn't matter if I have to go or not because this is what she says to Mom when she passes the phone back to her.

Monday, July 25, 2011

Treatment for Dementia

As you look into dementia, the question that arises almost immediately is wether or not it is treatable.  I think a tremendous amount depends upon what exactly you mean by treatable.  Are you asking: Is dementia reversable through medication?  Can a progressive form of dementia be slowed with treatment?  Or, can the patient's symptoms be mitigated through medical treatment?  Unfortunately, I'm not finding a single answer to any of those questions.  It appears that "it depends" is a common aspect of the answers.

1. Is dementia reversable through medication? 
If the dementia symptoms are the result of a treatable condition, then the answer is quite favorable.  For example, if the patient is actually depressed and the depression is presenting symptoms very similar to dementia, then yes, medication may well help the patient return to full cognitive abilities.  If the symptoms are the result of a hypoactive thyroid, the replacing the thyroid horomones would have a marked improvement on the patient's dementia-like symptoms.  However, if the dementia is a result of brain injury or brain disease, the dementia will not be reversed with medication.

2. Can a progressive form of dementia be slowed with treatment? 
Much of this answer depends upon the type of disease which is causing the dementia symptoms.  For example, if the patient has vascular dementia resulting from a stroke or other blockage of the blood flow in the brain, the doctor works to reduce the risk of another event.  They may ask the patient to take medicine for high blood pressure, for example.  With Alzheimer's Disease, doctors may prescribe cholinesterase inhibitors "slow the breakdown of the neurotransmitter acetylcholine."  These drugs seem to stabilize the person's cognitive abilities for a time but do not stop the progress of the disease.

3. Can the patient's symptoms be mitigated through medical treatment?
Some of the patient's dementia symptoms may be mitigated through medical treatment.  For example, antipsychotic drugs and sedatives are prescribed to control a patient's increasing agitation.  However, a recent study's finding is suggestive that the agitation may be eased with the use of pain relieving medicines.

This is just a mere highlight of this topic.  Please be sure to read the additional information sources. 

Additional Information Sources:
US Dept of Health & Human Services's Agency for Healthcare Research and Quality - Pharmacological Treatment of Dementia
"Treatment of Dementia and Agitation: A Guide for Families and Caregivers" - UC Davis
University of Maryland Medical Center 

The Accident

Mom wrote:

Reading "The Panter" reminded me of when Lyn was hit by a car in 1996. 

(Mom and Lyn were crossing a street.  The driver stopped, acknowledged them and allowed them to cross as he was waiting to turn into traffic.  Lyn was a couple of steps behind Mom and was hit when the man felt there was a large enough gap to make his left turn.  His car threw her into traffic but the gap was enough to let the oncoming car stop.)

She hit her head, 3 times it bounced on the pavement. Thank God the only "damage" was a huge knot on the back of her head. Remember, she wasn't able to read more than "survival" words at this time. After about a week after being hit, I began to notice her reading. We went to the zoo where she read all the little signs, PERFECTLY. So when we were at bowling the next Saturday I was telling her coach, a former teacher of her's, about this change. She told me that it was impossible.

I called Lyn over and asked her to tell me what a certain sign said, told her I didn't have my glasses. She read it perfectly!!! Walked away in disgust as tho I should have known what it said. Her coach stood there with her mouth open.

For 6 wks Lyn read captions in the newspaper, billboards etc. It was sooooo exciting.

Then one morning she woke up and it was all gone. She couldn't even remember how to tie her shoes. But for those wonderfully, exciting 6 wks, God gave me a hint as to what could have been. I told her coach it was forgotten & we were back to being worse than before.  So we started over in some of the training.  Now she can "read" about 100 words but struggles more and more with "b" and "d" as well as others. She guesses alot of the time.

Thursday, July 21, 2011

The Panther

Years ago, I read "The Panther", a poem by Rainer Maria Rilke. I first encountered the poem in a collection given to me by an aunt who was a librarian. I no longer have the collection because it was destroyed when our house burnt down. However, the poem stuck with me. While the poem uses a panther to describe imprisonment, it made me think about Lyn.

Lyn was born with her disability. Her brain has always been damaged. We have gotten to know her capabilities over the years and adjusted our hopes and espectations accordingly. However, there have been moments of such profound and breathtaking insight that we have been surpised by her. At those times, I think back on "The Panther" and find it still rings true to me.

The Panther
- Rainer Maria Rilke

His vision, from the constantly passing bars,
has grown so weary that it cannot hold
anything else. It seems to him there are
a thousand bars; and behind the bars, no world.

As he paces in cramped circles, over and over,
the movement of his powerful soft strides
is like a ritual dance around a center
in which a mighty will stands paralyzed.

Only at times, the curtain of the pupils
lifts, quietly--. An image enters in,
rushes down through the tensed, arrested muscles,
plunges into the heart and is gone.


For an interpretation and alternate translations of the poem, please visit The Beckoning.

Monday, July 18, 2011

The Look

Lyn has The Look.

I'm not talking about her unique sense of style. I'm not talking about an ability to vogue like Madonna. I'm talking about The Look. You know, the one that just screams disapproval even when you're over the phone and cannot see her face. Yes. That one. Lyn has that look. This look:



I'm not sure when she perfected her version of The Look. I suspect she was born with it and has just mastered her use of it over the years. Lyn will whip it out at the drop of a hat, a literal hat, it turns out.

A few years ago, Lyn told me about her new winter pull-over. She was excited because it was soft and very pink. Lyn has a love for red, purple and pink. She'll frequently wear any combination of those colors. Somehow, the fact of this new pull-over sunk into my brain and stuck.

It was getting close to Christmas and I was having a challenging time finding an acceptable gift for her. She's very difficult to shop for and I wanted to get her something other than some math workbooks from the local teacher's supply store. While at a craft fair, I spotted a wonderfully pink fleece hat. It had big flowers and was large enough to fit me. I remembered her new pink pull-over and thought the hat would be a perfect match. I bought it and was thrilled with my find.

I eagerly awaited the call on Christmas day when we'd wish each other well and tell each other what was under our respective trees. I thanked her for her gift to my family and me and asked her about her gifts. She listed everything in great detail except for the hat. When I asked if she got it, she said "Yes" and tried to change the subject. I heard The Look in her voice so I asked her to pass the phone to Mom. Mom proceed to describe how Lyn reacted and how she nearly dropped the hat in disgust. Lyn hated the hat.

I was disappointed. Now, before you think that I was crushed that Lyn didn't like it, let me set the record straight: I was disappointed I was not there to see her reaction first hand. Mom had me laughing over my sister's disgust in the hat. I made her promise to take at least one picture of the hat.

A few weeks later, this picture arrived in the mail:


The hat was also in the package.

Saturday, July 16, 2011

Types of Dementia

There are several types of dementia. Here are some of them:

Alzheimer's Disease causes the most prevalent form of dementia. Alzheimer's is a progressive degenerative disease of the brain in which clumps of plaque and tangles of protein, inflammation, and brain cell death result in the dementia symptoms.

Vascular Dementia is the second most common form. Vascular Dementia may result from one or more hemorrhages or areas of dead brain tissue resulting from a lack of oxygen. If the blood flow is blocked, oxygen is not delivered where it is needed and the deprived tissue dies. A stroke or a series of strokes can cause the hemorrhages or the block to the blood flow. Vascular Dementia can potentially be avoided if the patient is diagnosed early enough and given sufficient medical care to correct the blood flow issues in their brain. It is not considered to be progressive like Alzheimer's.

Mixed Dementia occurs when the patient has both Alzheimer's disease and Vascular dementia.

Lewy Body Dementia is caused by round clusters of a protein collecting in the brain. Parkinson's disease produces this type of dementia. Lewy Body Dementia is progressive like Alzheimer's.

Frontotemporal Dementia is a rare form of dementia which has three recognized sub-types. With this type of dementia, the disease is limited to the frontal or temporal anterior lobes of the brain. Those areas begin shrinking which leads to the symptoms. The specific symptoms depend upon where the damage is occurring.

We do not yet know what is causing Lyn's dementia. Hopefully, once her tests are done and she is able to meet with the neurologist, we will have a better idea of what is going on in her brain.

Additional Information Sources:
Wikipedia - Multi-infarct Dementia
National Institute of Neurological Disorders and Stroke - Frontotemporal Dementia

Thursday, July 14, 2011

How Dementia is Diagnosed

A diagnosis of dementia requires a physician to conduct several tests.  The physician first performs a physical exam of the patient.  During the exam, the physician may perform some memory tests on the patient and will want to discuss the patient's medical history and recent changes with both the patient and a friend or family member who is aware of any changes.  Having another person present for the physical exam can give the physician critical insight into what's happening that the patient may not think to share or may forget to state.

Next, a round of blood work may be requested to determine if the patient's thyroid is not functioning properly.  One of the primary symptoms of dementia, especially in the early stages is difficulty with short term memory.  One of the many things that your thyroid impacts is your memory.  If your thyroid is not functioning properly, it can cause you to have difficulty with short term memory.  So, the physician needs to rule out any other causes which would be evident in your blood work.

After that, An MRI, a CT scan, and/or an EEG may be ordered by the physician.  With the MRI and the CT scan, the doctor is going to be looking for any abnormal structures in the brain which could cause the dementia symptoms.  For example, a brain tumor needs to be ruled out.  The EEG will let them see if there is abnormal brain activity.

All of these tests are done to look for any cause for the patient's symptoms which are not dementia but may appear to be dementia.  If there is nothing else present which can cause the symptoms, the physician now focuses on the various conditions which cause dementia.  Remember that the word dementia describes a group of symptoms and that the doctor is trying to figure out the cause of those symptoms.

Additional Information Sources:
Webmd - Dementia Overview
Mayo Clinic - Dementia Tests and Diagnosis

Wednesday, July 13, 2011

Sleeping

Lyn's sleep patterns have been changing for the past several months. 

She used to sleep about 8 hours a night, 10 if she was exhausted from several straight days of activity.  Some days, she would take an hour nap as well.  Now, she's sleeping 11 or 12 hours a day, more if she's exhausted.  Naps have become more frequent and have increased up to 4 hours a day.  Mom says is it not unusual for Lyn to sleep 16 or more hours a day now.

One of the things doctors look at when trying to diagnose dementia is depression.  The need to rule it out because depression can produce symptoms that are similar to dementia such as changes in sleep patterns, forgetfulness and a disregard for personal safety or hygeine.  Depression has been ruled out as a factor in Lyn's case.

Mom has to take Lyn in for an EEG next week as part of all the lab work being done before they get to meet the neurologist.  The folks who will be doing Lyn's EEG have asked that she come in having had no more than 3 hours of sleep the night before the test.  They also don't want her to have caffiene for 48 hours before the test.  The hope is that they'll get her hooked up for the EEG and comfortable.  Then, because she's sleep deprived, they want her to fall asleep.  They have explained that if she's asleep and if her brain is experiencing abnormal activity that it is more likely to do it and it is easier to record while she's sleeping.

I honestly wish I was there to help keep Lyn awake.  Maybe Lyn's respite provider can come and drive them to the EEG because they'll both be worn out.  I need to remember to make that suggestion to Mom.

Monday, July 11, 2011

What is Dementia

The Alzheimer's Reading Room states:  "Dementia is the gradual deterioration of mental functioning, such as concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities."

Dementia is elsewhere described as a chronic and usually progressive loss of cognitive ability as a result of brain disease or injury.  Dementia can bring on impaired reasoning, memory loss, and personality changes.  The rate of changes observed in a person with dementia is not set and the speed of progression varies from person to person.

Dementia is not a single disease or disorder.  It is a term that describes a collection of symptoms.  Dementia has no single cause.  Dementia is not curable but it may be treatable.  There are conditions which may mimic dementia which are curable such as dehydration.

Symptoms can include but are not limited to:

  • Verbal repetition
  • Not being able to follow directions
  • Losing the sense of time
  • Neglecting safety, hygiene and nutrition
  • Forgetting people
  • Forgetting places and getting lost
  • Forgetting acquired, long used skills
  • Getting easily distracted and leaving in the middle of a task
  • Anxiety when there are changes in routine

Additional Information Sources:
Psych Central
Medicine Net
National Institute of Neurological Disorders and Stroke

Lyn is an Athlete

This is Lyn.  Lyn is an athlete.  Lyn's been competing since she was 6 years old.


While this is an old picture of Lyn, it is one of my favorites.  I keep this one on my desk at work.  She had won yet another medal for her participation in Special Olympics.  After 3+ decades of competition, I couldn't even hazard a guess as to how many medals and ribbons she's won over the years. 

Lyn has competed mostly in Bowling and Track and Field.  She did make it to the World Games for Gymnastics in the 1980's.  She's also competed in Downhill Skiing for several years.  She loved skiing but hated the poles.  The rules state that poles are required.  She would use the skis to push off at the start and then stick them straight out in front of her once she got going down hill.  You never wanted to be in front of my sister when she was skiing because you risked getting skewered by those poles.

Our immediate family has always supported Lyn's participation in Special Olympics.  At one time or another, Mom, our brother and I have all served as a volunteer in some capacity in addition to taking her to her practices and cheering her on at every competition.  When our grandparents were alive, they also came and cheered her on at competition.  Even now, the connection to Special Olympics continues and has been shared with the newest generation of our family.

Special Olympics, and Lyn's participation in it, was part of what allowed Mom to teach Lyn about differences in our brains at an early age.  It was an easy and immediately understandable concept that differences in people's brains made Lyn a good athlete while I was not a good athlete.  Differences in coloration, height or weight were all just visual differences that, while illustrative, didn't convey that things can just work differently.  Lyn has blue eyes.  I have brown eyes.  However, we both could see equally well.  Neither of us needed glasses at that time and so it wasn't obvious that eyes could work differently.  Lyn's athletic abilities and passion had to come from somewhere.  Mom used those things to explain that our brains work differently even though we cannot see them.

We haven't told Lyn what she couldn't do.  We haven't defined Lyn's limitations for her.  Instead, we've focused on what she can do, what she likes to do and what she's good at doing.  She's good at bowling.  She loves it.  So, Mom makes sure that Lyn continues to bowl each week.  She has her own ball and shoes.  Her equipment is kept in good condition and she still competes.  Each week, Lyn tells me her scores for the week.  When she visits me, she and my older child go head to head on the Wii.  She wins.

Sunday, July 10, 2011

She's Aware

Written by Mom, last night:

This afternoon we had errands to run.  I told her I needed to stop at the Dollar Store to get paper cups.  I knew there was something else but couldn’t remember what I else I needed to get.  She wanted Rudy’s BBQ for lunch and while there, again I tried to remember what I needed from Dollar Store.  When we left lunch, she began naming things I might be needing from the store.  I said I knew I should have written it down.  It was decided that between us, both brains weren’t in good working order.

She surprised me, again.  She had a mature outlook when she said “I have something going on in my brain.”  I agreed and said "That’s what we’re trying to find out."  I reminded her that God made everyone different so things wouldn’t get boring.  We talked about her siblings' eyes being brown & hers being blue but they do the same thing, allow you to see.  She said it is the same with brains.  Yes, that lesson she remembers.

I said that with the MRI, EEG and going to see a neurologist he will let us know what’s going on.  We have looked at the MRI images and have no idea what it means.  The neurologist is trained to know exactly what he’s looking at.  “So he can help fix my brain?”  "Well," I said, "he can tell us what we need to do to at least make things better."  I told her sometimes things can’t be “fixed” and we just learn to deal with it and that might be the case.

She nodded and asked if “today we have 4 brain cells between us”.  I laughed and said yes and I think 3 of them are hers.  She doesn’t seem upset about things not being “fixed like before” but knowing that we’ll deal with whatever it is did reassure her.

Tonight at Church she had trouble getting into a kneeling position and at times standing up from a sitting position.

She’s happy right now.  I fixed chicken fettuccini alfredo for dinner and now she’s watching Cops.

Saturday, July 9, 2011

Sundowners

Sundowners is described as a mood disorder in which the individual becomes upset or confused in the late afternoon or early evening.  As the sun sets, the light changes and makes things look different.  The changes in the light seems to trigger the person's agitation.  That's the understanding we were given of it when Lyn was diagnosed.  However, Sundowners is actually much more than a simple mood disorder.

Sundowners is recognized as a precursor of dementia or Alzheimers.  From all the descriptions I've read of Sundowners, it is described as a condition of the elderly.  However, Lyn was diagnosed with Sundowners when she was 26.  Maybe we should have realized that the Sundowners was more than what we thought.  However, we got used to Lyn's new reality with Sundowners.  It was easily managed and we were able to keep her agitation to a pretty low level.

Lyn is generally OK during the afternoon and evening if she's in her own environment where she has a lot of control over things and knows the routine.  If she's out of her environment, she expresses her agitation by verbally lashing out or bursting into tears.

If Lyn's not in her environment or if her routine is different, then we see her agitation increase.  For example, if we're going out to dinner with her, we go early and anticipate leaving as soon as the bill is paid.  There is no such thing as lingering over coffee when Lyn's with us.  If Lyn travels, we set up the travel environment to be as calm and similar to her home environment as possible.  This means that we give her a space that she either has exclusively to herself or only shares with Mom.  Since she and Mom live over 1,000 miles away from me, we make sure Lyn has a room just for her use during her visits.  She may still have an outburst, especially tears, but in the morning, all is well.

We have noticed over the years that travel has become more and more difficult for her.  Day trips are still manageable at this time.  After her recent visit to my home, however, we're not sure that she'll be able to travel again for any extended stays.

Deciding Who to Tell

The blood work has been done.  Everything is pretty normal except for a very mildly hypoactive thyroid.  Lyn's now on Levoxyl to treat it.  Hypoactive thyroids run in the family so that's no surprise.  The MRI is done as well.  I hope to post some of the images of Lyn's brain here pretty soon.

Another note from Mom:

Another difficult time getting to sleep.  It’s 2:45am, I have a class to teach tomorrow @ 10 but can’t sleep because much running thru my mind.  I love my daughter and want to protect her.

I’ve decided not to tell family of this journey.  Since we wrote the book on being dysfunctional, I think it will be for the best.  They’ll find out over time.

One of her uncles wrote her off when she in her early teens.  Why?  She wasn’t perfect.  He couldn’t or wouldn’t see all she has offered in life.  The lessons on how to love and accept people because of what’s in their hearts.  The lessons on being positive and seeing beauty in everything around us such as the beautiful sunsets our state is known for.  Or perhaps by seeing her “imperfections” he will have to acknowledge his own shortcomings!

Another uncle believes everything is controlled by our brain.  If, for example, a child is physically ill then he will say it’s because the parent perhaps scolded the child and this is the child’s way of dealing with the negative feelings.  I remember when my daughter was 5 mon old and I’d just brought her home from Europe.  She was diagnosed with bronchitis and he told me this was her way of dealing with her life being upset and the routine being changed.  It was, in truth, her way of punishing me.  ROTFLM_O.

Another uncle, her favorite, is in denial.  I did tell him but he’s shut down about this.  I was there for him during a family crisis but I know he won’t be there for me.  I even asked if he would go with me to get her blood drawn since she’s VERY afraid of needles. He said he wouldn’t since he doesn’t like them either.  She did fine-valium works well!!!!!

At a time like this I know a strong support line is vital.  But when it’s not there you do something else.  I know I have to go to bed when I’d drop-dead tired.  That’s the only way I can fall asleep and not let my mind wander.   I need to wait and see exactly what the MRI and EEG show.  THIS will be a test of my patience.

I’m not going to think about extended family.  I’ll go try to prepare for my class then get some sleep.

Writing Conventions

Just a quick note to outline the conventions I'll follow when writing this blog.  I will not be using the real names of anyone in this blog.  I want to respect their privacy.  Any references I make to a minor will be in gender neutral terms.  Minors will only be referred to by a single letter.  Adults will be assigned new names.  Thank you for your understanding.

Recently Observed Changes

These are the recently observed changes in Lyn which caused Mom to seek assistance.  The changes were brought up in a review with my sister's team.  You'll hear more about them later.  They all agreed that something was not right and an appointment was scheduled with her physician.  The physician has since scheduled lab work, an MRI, and an EEG.   When all the tests are complete, they will be seen by the neurologist.

Now, to the changes.


April:  Forgot how to measure detergent & turn washer on.  She had been doing her own laundry for about 20 years.

May:   Forgot how to find radio station & turn radio on in the car using preset stations.

June:   Forgot what menstruation was and panicked when it started.  She has to be reminded to change sanitary pad several times a day.  This one is interesting to me because she's had to deal with menstruation for at least 25 years.  She's regular as clockwork and didn't have a single issue with it last month.  She's also beginning to repeat and repeat and repeat something.

Friday, July 8, 2011

A Child is Born

As I mentioned, there will be posts from me and some from Mom.  Below is something Mom wrote when she couldn't sleep after getting Lyn's dementia diagnosis:

A child is born, hopes are raised, love increases.  Dreams are there whether or not they are recognized.

A child is not perfect, hopes are dashed, love increases.  As that child grows, develops and learns pride and encouragement are ever present.  Life goes on, all experiences, good or bad, are enriching for parent and child.
Every child learns differently and parents must realize the differences are God given and must be celebrated.

As the child grows we become “used to” the norm and have no idea how this special child will continue to achieve. Or will they?  My child is now a 40 yr old who has never fit into a peg hole, she is who she is and I thank God for allowing me to do what I could for her without knowing if it was right or wrong.  But now, she’s changing.

No one knows the future.  Some of us dared not dream of the future but the future is now.  I had no idea “children” like her are at a higher risk of early dementia.  It’s a true slap in the face.

She has suddenly “forgotten” life long lessons.  She is uncomfortable doing new things.  An annual trip was very difficult for her so it probably will be the final one.

Here I will keep track of my thoughts and feelings.  I have no other place to turn.  This will help me sort things out as we begin the rounds of MRI, EEG, lab and Neurology appointments.


Just Getting Started

Lyn is my sister.  She was born in 1971 and is 40 years old as of this post.  She was born intellectually disabled but has competed in Special Olympics since she was 6.  She still competes.  She worked for Wendy's restaurant for 19 years, if I remember correctly.  She quit a year ago and now, I don't think she'll ever return to work.  You see, two weeks ago, Lyn was diagnosed with dementia. 


Finding information about dementia is proving to be pretty easy.  Finding information about early on-set dementia, even from a patient perspective, is not too hard.  Finding information about early on-set dementia in the intellectually disabled is proving to be a challenge. 

This blog will serve as a place for our mother and I to collect our thoughts about Lyn's diagnosis and the changes we observe happening to her. We hope to provide you with updates about Lyn as well as information about dementia, the intellectually disabled, and the two together.  We want to record why Lyn's life matters to us and the other people who know her.  If in the process of doing all this, we help you understand a little more about the intellectually disabled, dementia or another topic, then we will count this blog as a success.

To say we were stunned by Lyn's diagnosis is an understatement.  However, we're already adapting to her new reality and looking for resources to help her continue living a fully enjoyable life.  So, dementia be damned!