Tuesday, June 30, 2015

Lots in the News

It seems silly to say that three news articles in one day to cross my desk is a heavy news day, but it is in the Alzheimer's reading list.  Now, they weren't all posted yesterday, they just came to my attention yesterday.  Thought I'd share.

From NPR, Can Technology Ease the Burden of Caring for People with Dementia?

From Huffington Post, New Study Says Memory and Thinking Tests Could Signal Alzheimer's Up to 18 Years Early.

From CBS News, Scientists Explore Why Most Alzheimer's Patients are Women.

Perhaps we're engaging more in dialogue about Alzheimer's.  This is a good thing.  With the pending Silver Tsunami, we need to remove the stigma associated with Alzheimer's and discuss it widely.  We used to whisper "cancer" and just dismiss dementia as a collection of "senior moments."  I think we're moving beyond that and recognizing the seriousness and impact of the disease.

Monday, June 29, 2015

Understanding

During our Skype conversation yesterday, Lyn really struggled for words.  She wanted to tell me about how she was having difficulty with her balance at church and she couldn't remember the words "aisle" or "pew."  She wanted to tell me about working with the physical therapist and how he wants her to try walking "heel-to-toe."  She declared that exercise "impossible!"  She struggled to identify the which part of one foot needed to touch the other.  She wanted to tell me about the people she knows who are going on vacation soon and when she couldn't remember where they were going, she just said "to the funnest place."

After our call ended, I got an email from Mom.  Lyn had stated that her "brain's just too tired to work right" and that she was concerned that I didn't understand her.  Mom assured her that I did because I had not asked Lyn to repeat herself or explain.  Lyn just smiled.

For the most part, I did understand.  I'm able to piece things together and long ago realized that even if I didn't understand her that just actively listening to her made her feel understood.  It doesn't really matter if I understand every single word she's trying to say.  I'm looking to understand the larger concepts and thoughts involved.  Getting stuck on the words would add to frustration for both of us.  It is like speaking with someone who is new to English.  Lots of grammatical errors can be made and incorrect words can be uttered but you still understand what is being conveyed and can successfully communicate despite the issues.

Thursday, June 25, 2015

Time to Buy the Rugs

It is time to invest in a few black rugs.

We've mentioned before that black throw rugs laid in front of the doors can look like holes in the floor to Alzheimer's patients.  Their brains are unable to process what they're seeing properly and they perceive it to be something they cannot cross.  It is a simple and effective way to discourage them from leaving the house if they are up and wandering, particularly at night.

Mom and I have talked about the potential need and Mom has figured out where she can easily buy them.  They won't match her decor, but for safety reasons, she's allowed to have some rugs that clash.  So, why do we think that the time has come to be prepared on this front?  Well...

Late last week, Lyn's auditory hallucinations in the night drove her to Mom's room just as Mom was getting ready for bed.  Lyn was in tears because of how frightened she was of "the loud sounds."  She didn't know if it was thunder, fireworks or gun shots.  Mom looked to Nikka and, other than being concerned for Lyn, the dog was calm.  Mom was able to show this to Lyn to help her understand that the sounds were gone (or never really there) and that Nikka was calm.  That night, Lyn ended up sleeping in bed with Mom.  Nikki slept beside the bed instead of in her own bed and whined each time that Lyn stopped breathing.  Mom would reach over to touch her and she'd start breathing again.

While that incident didn't involve her wandering, it is an example of her increasing night-time confusion and her hallucinations.  Lyn typically gets up to use the restroom about three hours after she goes to bed.  She usually returns to bed and stays put the rest of the night.  However, earlier this week, she did something completely different.

About thee afters after she went to bed, she walked out of her room and came down the hall just as chipper as could be.  When Mom asked if there was something she needed, Lyn said "No."  She was wide awake and started looking for things to do.  She eventually settled in to watch a little tv with Mom.  After about 20 minutes, she asked "Is the sun going to come up today?"  She wasn't worried about it; just curious.  Mom explained that the sun had just gone down and that it was the beginning of the night.  Lyn was incredulous and gave Mom The Look.  After about an hour, she gave up waiting for the sun and went back to bed.

Alzheimer's patients loose track of time.  Their sleep gets interrupted and they may switch night and day.  They may sleep for a few hours and get up and wander.  So, if we're catching her getting up now as if she's had a full night's sleep, the night-time wandering may be closer than we think.

Additional Information:
Alzheimer's: Managing Sleep Problems - Mayo Clinic
Treatments for Sleep Changes - Alzheimer's Association

Wednesday, June 24, 2015

Physical Therapy Assessment

Yesterday, Mom took Lyn for the assessment with the physical therapist who will be working to strengthen her quads as a result of the recent doctor's appointment.  The assessment went well and Lyn was very cooperative.

The therapist is a man which, I assure you, delighted Lyn.  He asked her to stand up from a chair about five times while she held her arms crossed across her chest.  He had her walk up and down a hall so he could observe her gait.  He asked her to lift one leg at a time and keep her leg up as he pushed against it.  She worked hard for him but he noted her very wide stance, her unsteady gait and the other symptoms her doctor had described in her notes.  He has worked with Alzheimer's patients before and was very sensitive towards and patient with Lyn.

Towards Mom, he was realistic and pragmatic.  He asked that Lyn bring in her walking stick.  (Lyn hates the word "cane" which is why it's called her walking stick.)  He thinks it may be time for that to become a constant assist and not just when we're out walking amid the ruins.  He was very glad to hear that Mom didn't think it was time for a four-point walker.  They're in agreement that time is coming but they're trying to hold it off as long as possible.

While Lyn's doctor prescribed four weeks of sessions, the therapist requested eight weeks.  He indicated that four weeks would most likely be insufficient to really see any change.  However, if there's not improvement by eight weeks, the reality is that there won't be improvement.  He stressed that the work they do for the next eight weeks may be effective but there are no promises and Lyn may be no better off in the end.

He has outlined some exercises he wants Lyn to do between their visits.  Lyn has committed to doing them.  Mom and I got a good laugh over her eagerness to please him.  If the therapist had been a woman, Lyn would have been less cooperative.

Tuesday, June 23, 2015

Educational Refresher

In case you have encountered someone who is recently beginning to deal with Alzheimer's or in case you want a bit of a refresher, I offer up the following videos for your educational viewing.


Alzheimer's Disease: A Guide for Patients and Families
(found this one while checking out the American Academy for Neurology)




Alzheimer's Disease - History, Symptoms, Diagnosis, Treatment




Monday, June 22, 2015

Sleeveless

When Lyn and I Skyped recently, she noticed that I was wearing something sleeveless.  She started to stand and turned to Mom.  "I need to go change."  Mom and I were both confused.  The conversation had just started and it was clear that she was in clean clothes.

"Why?" Mom asked.

"I need to change my shirt."  She reached up and pulled at her shoulders as she stumbled around trying to explain.

I realized she thought I was wearing a sleeveless shirt which she sometimes wears around the house.  I stood up and got her attention.  "I'm not wearing a shirt.  I'm wearing a dress."  I pulled at it a bit so she could see that it was a lot longer than her shirt would be.

"Oh."  She sat back down, looking disappointed.

The power of suggestion is so strong with her you don't even need words.

Friday, June 19, 2015

Time to Re-Evaluate

Four years ago, Lyn went through a neuro-psych evaluation.  Lynn's physician is suggesting that it is probably a good time for Lyn to undergo another one.  The first one would serve as a benchmark and the new one would let us have some sort of measure for the changes which we've been noting in her.  Mom is in agreement.

Lyn will be scheduled soon for her annual physical.  The plan is for the physician to speak to Lyn about the neuro-psych evaluation.  They know that if Mom suggests it to Lyn, she will refuse to cooperate.  Knowing that Lyn hated the lady who did the last one, they will look to line up the evaluation with someone else.

The physician was a little relieved to hear the ophthalmology report indicating that the eyes are healthy.  The assessment is that the issue is with the brain.  Either there's been shrinkage of the brain or a lesion which is causing the gait and vision issues.  While both may be visible with an MRI, Mom and the physician have decided against subjecting Lyn to that test.  They don't think Lyn would do well with it, it isn't medically necessary and if someone was found, there's no treatment for it.

Additional feedback has been provided by Lyn's physical therapist who has several patients with Alzheimer's.  She confirms that what Lyn's undergoing is much of what she sees with her other patients.  While the physician has ordered physical therapy to strengthen the quads, the therapist indicates that Lyn's actually physically pretty strong.  Lyn will receive the therapy but the therapist's assessment is that Lyn is forgetting how to stand up or how to coordinate her movements.  She's had Alzheimer's patients who momentarily forget how to walk mid-stride.  When that happens, she gently pushes down their leg because they can't stand on one foot for very long and risk falling.

This is just Alzheimer's, folks.  Some days you forget how to stand and others you're seemingly right as rain.

Wednesday, June 17, 2015

Picking Colors

Mom writes:

Coming down Lomas headed home and she said "That's a pretty color."
I assumed this refers to the car in front of me.  
"What is a pretty color?"
"That car."
"Yes it is.  What color is that?"  (It was grey.)
"Brown.  No, tan." 
"Are you sure?"
She studied it till the next light then asked, "Is it kinda grey?"
"Yes, it's a pretty grey."
"But next time we'll get a red one, right?"


I love how she interjects the thought of purchasing a new car into the conversation.  It is not quite a non-sequiter.

Tuesday, June 16, 2015

Faker?

Lynn's eye exam yesterday indicated that her eyes are just fine.  Her vision has changed a little but the peripheral vision was intact.  The ophthalmologist says there's no need for her to see him again until their regularly scheduled October appointment.

So what happened?  Is she a faker?  Has she been pretending her increasingly unsteady gait?  Could she pretend to not see her peripheral vision at all?  Could the ophthalmologist be wrong because he believes vision changes with Alzheimer's is rare?  Could there be something else going on?

Is she capable of faking?  Sure, for a short period of time.  However, Alzheimer's patients are known to try covering their losses instead of exaggerating them.  Additionally, she'd have to remember to be consistent at home, at church, with her respite provider, with the staff at day hab, with her speech and behavioral therapists as well as with her doctors.  She can't even remember what she ate at breakfast most days.  I don't think she could remember to consistently demonstrate the symptoms for so long.

Could she have pretended to not see?  I suppose it is possible.  However, she'd have to be convincing enough to get it past her doctor and have her doctor visibly shaken up.

Could the ophthalmologist be wrong about the state of her vision?  Could he be biased against what's being reported because he thinks vision changes in Alzheimer's is rare?  Possibly.  We know she didn't have a torn retina.  We also know from a previous visit that the doctor discounts vision changes related to Alzheimer's.  On that one, I have to question if he's up on the latest research because I know I read about Alzheimer's related loss of vision, particularly peripheral, on a regular basis.  Even Mom felt that the doctor was a bit dismissive.

Could something else be happening?  Yes.  Yesterday could have been a lucid day.  Alzheimer's patients have good days and not so good days.   Even her behavioral therapist has noted that she has these good days and bad days.  Also, her eyes could fine physically.  The problem with the vision is not with the eyes.  It is with the nerves or with the brain's ability to interpret the signals it is receiving.


Monday, June 15, 2015

Ataxic Gait

Friday's visit to the doctor happened on Friday.  Mom pointed to the change in Lyn's gate and her increasing unsteadiness as well as expressed her concern about Lyn's vision.  The doctor examined Lyn and was immediately concerned.  Lynn's gait is now showing ataxia and she's lost peripheral vision in her left eye.

Here's an example of an ataxic gait.


There are a number of causes for an ataxic gait.  Causes include a stroke or a lesion on the brain.  Right now, we're not sure if the inability to a full vision field is adding to her ataxia or if they're unconnected.

The doctor was immediately concerned.  She's ordering physical therapy to try and increase the strength of Lyn's quads.  She's also asked for Lyn to see her ophthalmologist as soon as possible.  Mom was able to get her scheduled for today.  There may need to be an MRI as well.


Wednesday, June 10, 2015

2015 ISP

Lynn's annual ISP meeting was held on Monday.  The ISP requires that Lyn have two goals at home and at least one at day hab.

The day hab goal is that Lyn will work on sheets from a workbook a couple of times each week.  When Lyn works on the sheet, she requires a staff member to sit and work with her.  She's unable to do sheets by herself any longer.  Unfortunately, the staff has to tend more than one client at a time and they're not able to stick with Lyn through the effort.

At home, Lyn's goals include emptying the dishwasher twice a week.  The thought is that Lyn will have to learn and maintain the steps which will help with her memory.  (I nearly snorted when I read that in Mom's email update to me.)  Her other goal is to do some power walking at least twice a week.

Lyn will continue with Behavioral and Physical therapies.  The Physical Therapist was unable to attend the session and as a result, I don't have a report out on that topic.  The Behavioral Therapist works with Lyn in problem solving and self-advocation.  The therapist has noted Lyn's loss of skills over the past year and adjusts accordingly.

While the meeting was going on, Mom writes that "She was on top of her game this morning.  SO different from last night that it throws me for a loop."

Tuesday, June 9, 2015

A Heavy Heart

Mom writes:

As I tucked her into bed at 6pm, I realized the knot in my stomach was much more than that.  I have a heavy heart as well.

I was watching her  sitting  on the couch "watching" tv.  Was she really watching?  Of course not.  She was tired, oh so tired, but didn't know what to do about it.  I simply told her to go to bed.  She got up and went to brush her teeth.

I realize how dull her expression has become lately.  Why hadn't I seen it before?  Why have I beome immune to the physical changes?  Perhaps I need to just go thru each day as it presents itself.

This afternoon when she struggled to explain her difficulty in seeing out of her left eye I felt like I'd been slapped.  Less than a year ago there was the loss of hearing in the left ear.  Are we to have loss of sight on the same side as well?  Perhaps.

Her unsteady gait is becoming more unsteady.  As we go up to the alter at Church to receive communion if she has to stop she usually takes a step or two backward.  I automatically touch the small of her back and she's ok.  When we go up the ramp at day-hab I automatically put my arm out for her to steady herself.  Why?  The ramp is dark brown and it's difficult for her to process.

Four years ago, after the Alzheimer's diagnosis I said I was going to be hyper-vigilant to everything that happens to her.  I was told that wasn't a path I needed to take in her care.  I was told I just needed to go with the flow and it would be easier on me.  That's what I've done.  LOL

So today it caught up to me and it has made me very sad.  Can it be changed?  Of course not.  Are these changes unexpected?  Of course not.  But it doesn't make the mother's heart hurt any less. She's my daughter, I love her and would change everything if I could.  But I'm not that powerful.  I'll just keep doing what I've been doing.

Monday, June 8, 2015

Left Eye

No, this blog post isn't titled after one of the singers from group TLC.  It looks like Lyn's left eye is problematic and needs to be checked again.  Mom writes:

"Over the last several days I've heard her say "I can't see that" but I basically ignored her because it seemed I heard this when her glasses were off for whatever reason.  Well, we're watching National Geographic with her glasses on.  In a most distressed voice, she said she couldn't see.  It wasn't that simple or quick a statement.  Took about 2 minutes before she got it out.  Her glasses were on and she was pointing to the left eye.  My heart sank.  No, she doesn't know how long this has been going on.  She evidently is having trouble seeing the tv which is less than 10 ft away."

Lyn has a doctor's appointment on Friday and Mom will mention the vision difficulties.  Perhaps they'll do a quick check using the vision charge.

Friday, June 5, 2015

The Second and Final Round

The current round of manipulation attempts bumped up a bit yesterday and Mom had to nip it in the bud.

After an outing with the folks at day hab, Lyn came to a stop at the ramp up into the building.  She prefers a ramp to stairs if it is available.  A female staff member asked if she needed help.  She turned the staff member down.  A second female staff member asked a moment later if she needed help.  She again turned the staff member down.  Lyn benefits from just a simple arm to rest her hand on as she walks up the ramp.  She holds onto the railing with the other hand.

After the second inquiry, Lyn stated that she didn't need help, she needed (male staff member) to hold both her hands to pull her up the ramp.  Lyn wanted the attention of a male staff member and was doing what she could to make that happen.  The staff refused, offering her the standard assistance.  The staff alerted Mom when she came to pick Lyn up.

Mom chastised Lyn and directed the staff to not accommodate the attention seeking behaviors.  Lyn was very upset and became contrite.  When I spoke to Mom, Lyn refused to speak with me.  She didn't want me to know about the incident.

Lyn won't try such manipulative behavior for a bit.  Then she'll forget and try again.

Wednesday, June 3, 2015

Can We Spell 'Manipulate'

Yesterday, I mentioned that Lyn had difficulty getting up and wash very shaky when she did, leaning up against the wall as a result.  Mom scheduled an appointment for Lyn to be seen by her physician.  Lyn didn't tell Mom about the incident until they were home and Mom wasn't able to confirm what Lyn relayed.

When she took Lyn to day hab yesterday, Mom spoke to one of the staff who interacted with Lyn during the shaky episode.  Lyn was seated at a table and indicated she was unable to get up.  She asked a staff member to get her lunch and bring it to her.  The staff asked if she needed help getting up.  Lyn said she did not.  They brought her lunch.  Once she had it, she got up and walked to the kitchen where they all usually eat their lunches.  The staff member confirms she was a "little wobbly" but no more than her recent usual.

Lyn does get a bit more wobbly when she's tired.  While individuals with Alzheimer's can have seizures and while Lyn has had seizures in the past, it is looking much more likely that Lyn's episode was of a much more benign origin.  I've mentioned before that Lyn has the ability to be manipulative.  The advent of her Alzheimer's hasn't changed this.  Lyn likes attention.

The staff smiled and and indicated that Lyn does enjoy attention but always sweet and helpful as well.

Tuesday, June 2, 2015

When Systems Fail

Yesterday's post prompted a friend who cared for her father-in-law who had Alzheimer's to write:

"In 2012, our house seemed to be in strong functioning order.  Plumbing, AC, and structure were all strong.  Only the electricity was faulty.  Then in early 2013, the hurricane hit and shook the house to the foundation.  It fell a couple of weeks after."

When I closed out the post indicating that I respectfully disagreed with Mom's assessment of the "state of the house," I was thinking of all that I've read over the past few years where there seems to be a pattern with Alzheimer's that the patient goes along, seeming quite well until they suddenly aren't.

Mom's living with Lyn and sees her changes on a daily basis.  Mom is constantly making small adjustments here and there to accommodate Lyn's current needs and capabilities.  In dealing with the details each day, she's not always able to see that two weeks can show significant changes.  This limitation of perception is not limited to Mom.  I don't always notice the changes in my own children until something or someone calls attention to them.  The fact that my oldest child is undeniably taller than me and quite possibly my husband, while anticipated, still snuck up on us.

I speak to Lyn once or twice a week.  Even then, I'm seeing her search for words more or repeat "I mean..." to the point where she frustrates herself.  I am honestly a bit concerned about her dropping weight.  She's down 4 dress sizes since the fall.  While that's good in one respect, I'm concerned it is less a result of any dietary changes that have been made and more a result of her body not processing food properly any longer which is a known issue with Alzheimer's.

Yesterday, I learned that Lyn had an issue at day hab in which she described being unable to get up and how the staff kept asking if she needed help or was OK.  When she did get up, she needed help and then leaned against a wall because she was shaking.  Mom's noticed her increasing unsteadiness and shakiness as well.  Mom's seeking clarification from the staff at day hab about what Lyn communicated and has scheduled Lyn for a doctor's appointment next Friday.

Yes, the house has faulty electrical systems and there's no telling when the other systems will start showing significant failure too.  When that time comes, I honestly hope it is like a hurricane that shakes the house to the foundations.  Better that than months or years barely being inhabited.  I saw that with my husband's grandmother and wish for a shorter time with Lyn.

Monday, June 1, 2015

Talking House Repairs

Last week, Mom and I had an extended conversation about the care and upkeep of her house.  Lyn was sitting there listening in.  The conversation was spun off from some estimates my husband and I were reviewing for work on our own home.

Mom and I spoke about how the structure of her home is in good condition and she thinks that it will last at least another 10 years.  The major systems in the house like the AC and electrical systems all seem to be in good working order.  We talked about how she doesn't want to invest huge amounts of effort or resources into maintaining the house because she intends to move out of that house when her situation changes.

We weren't talking about the house.  We both knew it.  We were having a totally different conversation and the house was how we could talk about Lyn in front of Lyn in such a way that she wouldn't be be upset or angry.  Or so we thought...

After the call was over, Lyn chastised Mom for talking about home repairs.  She didn't figure out that we were talking in code.  She was honestly irritated that we talked about home repairs.  She felt discussing home repairs was "not appropriated."  (She says "appropriated" instead of "appropriate.")

It may not have been appropriate, but Mom was trying to convey that she felt Lyn's body was holding up well despite the changes in her brain.  I respectfully begged to differ on that point.