Oh Yeah

We just  came back from a Mexican luncheon with Dan's sister Paula and her husband Van.  While there somehow we started talking about cussing.  As a joke I turned to mom and said,


"I remember every bad word you said to me as a kid."


She said, "Oh yeah,  I didn't even know you then."

The Circle of Life

Yesterday I had lunch with another Alzheimer caregiver-- a luncheon date set up by my dear neighbor and friend Anne whose own mother died with Alzheimer's disease.  Anne thought perhaps I might benefit from Linda's story. 

A few days before we met, Linda's mother-in-law actually died from the disease, but she still wanted to meet me.  While at lunch I learned  that Linda's own mother also died of the disease along with 3 of Linda's aunts.  Linda's husband's family also has a long history of dementia.  She says she has always been the "One" as Bob Demarco (Alzheimer Reading Room) refers to the caregiver. Linda is still not done as she will be flying out east shortly to check in on her aging aunt & uncle who also have the disease.   She commented how it always seemed to be one member of a family who steps up to this role.  I also have found that to be the case.

Looking into her eyes I could see the soul of a person who understands exactly what I am living each and every day.  With Anne I receive the same level of comfort as she too understands.  As we were sitting there another friend Jenny who just lost her mother in the last month to Alzheimers walked in.  So there we were the four of us all of which whose mothers had this terrible disease with my mother Lily the only one left still alive.  I have many many wonderful friends but the knowing concerned looks in these fellow caregivers eyes reach through to my soul and fill me up at times so desperately needed.

Linda told me a story regarding her mother which I would love to share.   Linda's mother worked in a school cafeteria and took it on herself to be sure no child ever went hungry.  At lunchtime she watched out for them and apparently she touched many a child's heart.  Many years later when Linda had to place her mother in a nursing facility after years of caregiving she discovered that one of her mother's nursing aides had been one of these children.  This caregiver told Linda how her mother watched over her and how she would do and did watch over her mother lovingly till the end.

The circle of life.  We like to think what goes around comes around and in this particular case that certainly proved true.

Last Twelve Hours

Assisted mom to bed last night about 9pm...medication, removed soiled clothes, placed outfit for next day in her room, assisted her in removing her dentures to soak, set up her toothbrush and reminded her to brush her 3 teeth.  "You know I only have 3.  Big deal."
Reminded her to go to the bathroom.  Turned on her tv.  Fed her cat.  Cleaned out the litter box.

There done.   9:30pm  ready to relax for the evening.  Got into my pj's, grabbed a book, settled into bed.

10pm.   Ryan home and heard him talking to Lily.   Hmmmm   wonder why she is up.  Went out to hall and there she was just coming up from downstairs all dressed in her "tomorrow's outfit", teeth in.

"Oh there you are.  I thought you were gone."     arggggggggg...............

So we start again....................


This morning after the morning routine off to St. Leonards with Lily in her diamond earrings.

Pulling in    "I'm going here again." 
"And what are you going to do all day?" she says to me with one of those looks on her face like... I know what you are doing and it's not hanging out with me.

I said,  "Oh I have to go to the vet.  Mom you will have fun with your friends and maybe you will be the big winner of bingo again.  Remember you won 50 cents last time."

"Fifty bloody cents.  Big deal.  You know what I will tell them.  Stick it up your........"

As we pull towards the building she says,   "See that there.  That is where they put us ......in the basement."

I have to say I was surprised that where the daycare was had been noticed by her and she had put an implication behind the location.   Her awareness still catches me off guard at times.

I suppose if I didn't already know and see how much mom actually enjoys the setting and interaction especially with the staff those comments above would upset me.  The staff are so nice to Lily and obviously are fond of her and she them.  I met a volunteer there today named Maureen who started last Friday and plans to volunteer each week.  She was very nice and I was quite touched that people out there do care and want to help.  She said to me, "have a wonderful day."   And you know I think I will.

Incontinence

This morning Lily had another accident, the second time in a couple of days and an increasing problem in the last couple of months.  Both times I have found her wet pants early in the morning after she had already changed out of her PJ's.  She takes them off and places them over the register in her room so you can imagine the smell when I open the door.  She then puts her PJ's back on as I only keep one outfit in there at a time to prevent her "packing" behavior.

I was pondering this as I was driving thinking perhaps it was time to suggest depends and really not liking the indignity that would bring to her.

The more I thought about it I wondered why these accidents were coming more and more frequent and the timing of them.  During the day she is not incontinent and her bed has rarely been wet.  Then it came to me.  I bet she is getting up and immediately getting dressed and when she goes to use the bathroom it is occupied by one of my children.  Lately I have noticed that when she has to go there is no time to wait.  And yes I have had her checked for a bladder infection.  I believe her mind due to Alzheimers is just not registering that her bladder is full quick enough so when it is time she must immediately go to the restroom.

So I was wondering if it used to be she could wait for the kids to get out but now she can't and she does not have the judgement to knock on the door or to go to another bathroom and that is why the accident happens.
So before I try the depends I am going to alter our behavior to try to facilitate hers and have the kids take all their morning showers  in our bathroom and see if that alleviates the problem.

Perhaps we can hold off on the depends a little longer................

Old Notes

I was going through mom's paperwork this morning and came across an old list I made back in December 04 (a little over 5 years ago) regarding mom's behavior when she was living alone in SC.

1. very forgetful   ex.  left oven on and forgetting recent conversations
2. does not take her thyroid medication properly nor does not see importance of doing so
3. mailed me 2 birthday cards.
4. trouble with bill paying
5. buying clothes she doesn't need and many still have price tags still on them
6. repetitive  
   
7. confused at times- reorients quickly
8. cooking difficulties and forgetting to eat.   ex.  made ravioli without any sauce
9. numerous grocery items of the same type   ex. salad dressing, butter, jam
   

Alzheimer's Reading Room: "I Remember Better When I Paint"

Alzheimer's Reading Room: "I Remember Better When I Paint"

Alzheimer's Reading Room: What is Alzheimer's Disease ?

Alzheimer's Reading Room: What is Alzheimer's Disease ?

Togetherness

Ryan, Lilybird, and Rudi watching TV this afternoon.

Dr OZ Memory Test for Alzheimer's Has a Flaw in the Scoring System

 Concerned about your memory.  There is as link in this article which will take you to Dr. Oz's Memory Test which I took. (and passed,  whew!!!)  This article helps with understanding the correct way to answer a couple of the questions which are not made clear in the test.




Dr OZ Memory Test for Alzheimer's Has a Flaw in the Scoring System

Alzheimer's Reading Room: Exercise Your Brain Or Roll the Dice ?

Alzheimer's Reading Room: Exercise Your Brain Or Roll the Dice ?

Dementia by Max Wallack

Turning true-blue loyal friends into treacherous strangers.....

It gallops in silently on powerful hoofs
Snatching sweet, precious, forgotten memories
Turning true-blue loyal friends into treacherous strangers
Clogging synapses with emptiness
Crumbling trust into excruciating paranoia

With bleak darkness comes the anxious wakefulness of broad daylight
And bitter terror encompasses every living fiber
"If I sleep, where will I be when I wake up?"
The compulsion to run, the paralysis of fear

Mature, child-like dependence
Retracing youthful development, but in rapid reverse
Cureless medicines, meaningless conversations
Leading up to the inevitable

Claire

Happy 18th Birthday Ryan!

Image in the Mirror

Lily said, "What's that thing?"


Dan reached over and turned the light on the new make up mirror he just put up in Lily and the kid's bathroom.


"Oh that is a light," said Lily answering herself.

"No,  that is a mirror," replied Dan.

"Oh,  I don't see no face of mine."

Then Dan tilted the mirror so she could see herself and she said,


"That's ugly.  Turn it off."

Study Off

The research nurse called this morning and said Lily's TSH level (Thyroid) was high and out of range for the study.  She said she still could enroll later once they bring her level down.  I asked if we had to repeat the whole process which took over 2 hours and she said yes.  I asked if they could draw the lab first to check her thryroid before we did the whole process the next time.  She said yes but but through the doctors office and then they would have to restick her again because the lab work has to go through the study lab.

I was really discouraged and frustrated after hearing this.  The whole process was just a big waste of time.  That along with a couple of other frustrating events over the last couple days has got me on edge.  I am feeling  that stressful "gut" feeling I get when I feel overwhelmed.  Oh well,  I am sure tomorrow will be a better day.

Exelon Patch (rivastigmine)

Today I took mom to her Dr. to be enrolled in a new study for patients with moderate to severe Alzheimer disease.  To qualify you basically have to be physically healthy, MMSE score of less than 12 I believe, not live in a nursing home, and have a caregiver willing to help you with the med and get you to the appointments.
Mom's MMSE score today was 10.  The last time she was tested (last summer) it was 12.  She had lab work drawn, EKG done (normal), and a mini physical.  We were there 2 hours.  She also has to have a CT scan which needs to be done this week.  I will have to take her off her Razadine 2 weeks before she starts on the patch so I will do that on the 14th and she goes back the 28th and if all the above tests (lab & CT scan) are ok she will start the new drug.  All patients in the study will receive the drug however there is a low dose group and a high dose group and we will not know which group she is in. The drug (low dose) is already FDA approved for mild to moderate Alzheimer patients so this study is to see if there is any benefit for the later stage patient.  The study lasts for 6 months with mom able to continue the medication (low dose) after 6 months if there is improvement.

I don't know if Lily will benefit from this but the medication she is on is not keeping her from gradually deteriorating so I thought why not?  Hopefully we will see some positive indicators and if not at the very least she is helping in the fight against this horrendous disease.

I will keep you posted.

Alzheimer's Reading Room: At the Age 85 my Mother was a Dynamo, Now She is Invisible

Alzheimer's Reading Room: At the Age 85 my Mother was a Dynamo, Now She is Invisible

My comments to this article:

Just today I put your blog down as the source for information for a clinical study so you see you are not invisible. However, I do understand what you are saying and often think my mother tends to become invisible unless I pay attention and draw her into the conversation around us.  Your mother sounds delightful and I am sure you "still see Dorothy" through the Alzheimer glaze as I "still see Lily."  Although the "still Lily" parts are gradually fading and becoming harder to draw out.  That is the challenge.

Eating Mexican

We celebrated my father-in-law Russ's  88th birthday at his favorite Mexican restaurant.  Looking at the menu mom said,  "I don't want anything Mexican."

Big News

Holding the paper up this morning, Lily said,

"They're building a whole new city. Can you believe it?"

Orange Not Her Color

Lily and I were standing inside the door at Marshall's recently waiting for Ryan who went to get the car to pick us up.  A burnt orange car drove by and Lily said,

"Hey did you see the color of that car.  That would make me have the runs if I owned a car that color."

Naughty Talk

Today Emily, Lily, & I went to Kohls to return a Christmas item.  While there we bought Lilybird 6 pair of panties and then headed out for lunch. The entire time driving  to Panera she complained about the cost of the 6 pair of panties.

In the booth in front of us at Panera was a cute little old man in his 80's eating alone.  He stood up and went over to talk to an employee there and laughing mom pokes me and says, "Look at him, he is so old." (She never really seems to understand that she too, is old)

So getting in the spirit of things I said to her,  "Oh, so do you want to meet him, mom?"


"No!"


"He is probably rich."

"I don't care."


"Come on Mom,  you could leave me an inheritance."

She starts laughing and says, "Hell no, I wouldn't leave it to you."

"All you have to do is sleep with him ooooone night."

With that she really starts laughing and wiping tears from her eyes. About that time Emily pops in with,

"And you just bought all that new underwear!"  at which Mom almost spits out her coffee all over the table.


And 15 seconds later it was, "What little old man."  Conversation totally forgotten.

Stepping Out!

With all the cold weather Ryan thought Lily needed a hat and scarf.  Somehow we all ended up with hats on!                                                                                                                                                                                               

Dishes

Lily loves to do dishes which used to be a great thing.  We just had to make sure her glasses were on and life was good.  The last few months it has become increasingly evident that she is forgetting some basic elements.

First it started with forgetting to make sure the water was hot.  Not such a big deal.  I would just always try to check the water temperature.  Then came the soap.  Initially she just used way too much and we were constantly running out of dish soap which was not a big deal.  However, then she started to line up the glasses and put soap into each glass.  No problem except try rinsing a glass which you have put even a drop of soap.

It takes some time for the water to run clear.  Of course Lily would not run the water till clear and everytime we would fill our glasses up with water we always had a "foam head."  Good for clearing the bowels, not good for the taste buds, lol.  So then we started to hide the soap and I would add it for her to do the dishes.  Oh and did I tell you Lily cannot stand even a fork in the sink.  Everything has to be washed immediately possibly because this is one area of her life where she feels confident and has control.  Unfortunately I am not always in the kitchen to catch this and we would find her washing dishes with NO soap.  Just rinsing or filling the sink with hot or lukewarm water.  So we had to come up with an idea.  That is the thing with Alzheimers.  It does no good to get mad or try to change their behavior you just have to adapt.  Think, Think, Think and come up with a new strategy which is what I did.

So now when we leave the kitchen I place this cardboard insert over the sink and Mom does not do the dishes.  When there is a stack, miraculously we have soap, I remove the insert and Lily is happy.

Ryan's birthday January 2008