Friday, July 3, 2015

July Holiday 2015

Tomorrow is the Fourth of July and my family and I will spend it eating too much and laughing with my husband's cousins as they stage their own fireworks show.  It is a loud, colorful, mosquito-eaten day which we enjoy.

Tomorrow, Mom will most likely have to medicate both Lyn and Nikka so they can survive the night without having full-blown anxiety attacks.  Neither are able to tolerate the sounds of thunder much less fireworks or the occasional gunshots.  I think their fear stems from their inability to anticipate when a boom is going to happen or understand why they are happening.  If you're caring for an individual with a form of dementia, you may find they are highly agitated during storms and fireworks shows.

For those of you who don't enjoy the booming fireworks, I hope you have a quiet evening where you and your pets feel safe and secure.  For those of us who relish the noise, I hope you have an enjoyable time and remember to be gentle with those who feel differently.

Enjoy your holiday however you spend it.  We'll return with posts on Monday, July 13.

Thursday, July 2, 2015

PSP

Progressive Supranuclear Palsy (PSP) is a rare brain disease in which small, pea-sized lesions form in the brain causing loss of balance, complex eye movements, blurred vision and progressive dementia.  As the name indicates, the disorder is progressive and gets worse over time.  Many of the symptoms mimic Parkinson's disease which makes it hard to diagnose.  

Lynn's physical therapist asked if Lyn had been evaluated for it.  She has not.  He indicated that the symptoms he's seeing are similar.  Regardless of the cause of her gait issues, the therapeutic approach is the same.  

Mom placed a call into Lyn's physician to give her the name of the disease and to see if Lyn needs to be evaluated or if it can be ruled out.  I've not noticed the eye movements described in the link above.  I doubt that PSP is a factor here.  Even if it was, according to the NIH, mortality is usually within 10 years of the onset of symptoms, often as a result of aspiration pneumonia.  Aspiration pneumonia is also a risk with Alzheimer's.  Neither have treatments available.  So, even if it is PSP, she's got a progressive neurological disease.

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