I have a Headache!

This morning I came down stairs and made note of the cute outfit mom had on which consisted of her purple pj's over a white shirt with socks and shoes.  I said, "Mom I want to take your picture" and she immediately posed as you see on the right.

However, my camera batteries were dead so it took me about 5 minutes to replace them.  In the meantime mom became comfortable sitting at the counter drinking her coffee.

"Ok Mom I am ready to get that picture."  As quickly as she had wanted a picture earlier  she now wanted no part of that.  "I want no picture.  I have a headache. It just came on. A real...............ly bad headache." She was smiling as she looked through her fingers but when mom says no she means no at least for that moment. 

I said,  " You never get a headache.  Remember what Norbert (my dad) used to say to you? "

Laughing she said, "I know how can you get a headache when there is nothing in there?  He used to kid me about that all the time."

Well about 10 minutes later after she was done with her coffee and back on her feet, I again requested a picture and she happily posed as you see above right.

Many times when trying to get a person diagnosed with Alzheimers to do something and they don't want to, just give it a rest and come back to it once they have forgotten that they don't want to do it.

On a Bicycle Built for Two

I have noticed that Mom is more inclined to say yes rather than no to trying new things now. Today my son Ryan asked her if she wanted to go bike riding with him. She said, "With you? Sure." So out we all went and Ryan hopped on the front of our tandem bike and my husband Dan helped Lily on the back and off they went. Ryan said he tried to talk to her while riding and she said, "Shut up. Don't talk. Just pay attention." She had the biggest smile on her face when she got off and said, "You didn't think I could do it, did you?" I have to admit I wondered as I have never seen her on a bike in my entire life. I also worried about the consequences of a fall, but then thought why not?

Josiah's wedding

Tonight my mother asked me to dance. I don't believe she has asked me to dance with her my entire 52 years. Just out of the blue we were sitting at Josiah's wedding reception and she grabbed my hands and practically pulled me out on the dance floor. My children were so surprised and Emily used the camera to video our dance. For those watching they never would have guessed this 77 year old woman has had Alzheimer's disease for several years now. She still has a much better sense of rhythm than I and was swirling and twirling and having the best of times.

Throughout the evening she danced with her granddaughter Emily, her grandson Ryan, a couple of Emily's friends, and she was even asked to dance by a young man at the end of the evening that none of us knew. I believe she will sleep very well tonight.

"A pill for a pill"

.........and so we begin our morning. "A pill for a pill," is what my mother says most mornings as I hand her her pills to take. Mom is on thyroid med, Calcium plusVit D and her memory pills--Namenda and Razadine. She also takes risperdal for agitation.
The first spring she was with us she became very agitated and we could not calm her down. Her Doctor put her on namenda which worked great. The next spring she again became agitated and so she was put on risperdal. Because this drug is an antipsycotic I questioned this choice but was told this worked better than a mild sedative because the sedative increased the risk of falling. She actually has done very well on risperdal with no real change in her personality (I thought she might lose her spark) which is what I was afraid of.
Sometime in the last year I put her on 1000mg cinnamon capsules twice per day which helps to promote healthy blood sugar metabolism. Cinnamon's effectiveness in supporting optimal blood sugar levels suggests a potential role in averting the dangers of Alzheimer's disease. I do feel like I saw a positive change from being on the cinnamon and she has stayed relatively stable.

Still Alice

Yesterday my neighbor Anne gave me a book to read titled "Still Alice". At the time she told me it was about a lady with Alzheimer's and I was thinking I have so many books still to read at home when would I get the time. However I took the book telling her to let me know if she wanted it back before I managed to get to it since she had not read it yet.

Well that evening I picked it up on a whim and I finished it tonight. The book was very difficult to put down. I highly recommend this book to everyone but especially to those affected personally by Alzheimer's. Even though this book is fiction the author Lisa Genova manages to capture so many of the characteristics of one with Alzheimer's and the struggles which they and their families go through.

The author was able to put into words some of what I have experienced with my mom and allowed me to perceive it from her point of view. She may not remember last week, yesterday, or even 5 minutes ago, but her expressions, mood, and actions reflect what is going on around her in the present. Just because her memory is gone does not mean all the other parts of her have no value. In other words she is STILL Lily.

"Still Alice" is a remarkable read and well worth your while.

Graduation party

Last spring at one of the many graduation parties we went to the hosts had a continual slide show running of the graduation seniors. While eating we were watching the show and I looked over at mom who had finished eating and was watching all the pictures. With each new picture she would wave her hand at the screen. I said, "Mom what are you doing?" and she replied, "Well I don't want them to feel that we aren't friendly."

Packed and ready to go

Until recently Mom would pack everyday to go back to South Carolina to her home. She usually would fill up grocery bags with her clothes as the suitcases were all put away. So each day I would unpack her and the next day she would pack again. I started hiding the grocery bags to try to curtail this behavior but then she would just pile all her clothes out of the dresser onto the bed.

While in Florida last year Mom came up with her own style of a knapsack for her clothes. As you can see by the picture she took her white pants and and knotted each leg and stuffed all her clothes inside. All she needed was a stick to tie to it and throw over her shoulder!

Eventually I determined the best way to handle this was to remove all her clothes except her socks, underwear, and her jammies from her room. Each night I put in one clean outfit for the next day and remove what she wore that day. Now if she decides to pack it takes me 30 seconds to put these items back in her drawer. Also having only one choice of an outfit ends what use to be her daily struggle deciding what to wear.

Reunion with Ryan

My son Ryan returned yesterday from a week long trip to Norris Lake. My mother who doesn't remember to ask about her own children asked me almost everyday about Ryan and when he would return.
The day he was to come home she said, "Ryan is coming home today right?" She loves Ryan and Ryan loves his Nana Lilly.














Rudi our pug even missed Ryan!

Piano

Recently my husband listed a piano we had in our garage on Craigs List and he sold it to a couple within a couple of days. He received a $300 check and they said they would have piano movers come the next day to move it. I was in the shower that morning when the movers arrived and mom just happened to be in the driveway sweeping. "No there is no piano here. I don't know anything about a piano." So the movers left and called the woman who hired them to give them the news there was no piano to be picked up at that address. The woman called frantically wondering what was going on. Of course the movers were told to come back and retrieve the piano. Mom just said, "Well nobody told me about any piano." (although she had just walked past it to get to the driveway to sweep)

At the Salon

Due to her disease Lilybird tends to get on a "loop" with certain sentences or behaviors repeating them over and over again till she moves onto something else. One of these behaviors is whenever she goes to the bathroom and looks in the mirror she wets her hair down and slicks it straight back in a very unattractive style which makes her look about 90 years old. So I am continually redoing her hair after she goes to the bathroom so she looks nice. Mom was always very particular how she looked wearing make up and fixing her hair every day.

So today Mom and I went to the salon to get our hair cut and styled. While there I was reminded of the time a few months ago when I had taken mom to this salon and she received a cut and style. She looked so nice! After the stylist finished with her she had to go to the bathroom. When she came out she had wet her hair down and slicked it straight back because she had totally forgotten that she had her hair done!

Florida Condo

While in Florida we rented a condo for the week where we all stayed along with our two cats Wilson & Lucy Lu. Everyday Lilybird would say, "When are those people coming home so we can go? And the funny thing is their cats look just like my two cats back home."

One King Size Bed

Recently while on vacation we stopped in South Carolina and requested two hotel rooms. The hotel was out of double bed rooms so we had to get two rooms with King size beds. Naturally my husband and I took one which left one for my seventeen year old son, my twenty-one year old daughter, and "Nana". My six foot two son Ryan offered to sleep on the floor, but apparently he soon realized how uncomfortable that would be. He jumped into bed with Nana Lily and Emily wrapping his arms around his grandma and said, "Nana I'm going to sleep in bed with you tonight." Lily agreed that the bed would be much more comfortable than the floor, but said, "But don't tell my mom!" (I don't have a picture of this but this picture gives you an idea what they must have looked like only on a hotel bed)

GPS

Another day and we were driving to another Alzheimer study where mom was to be tested to see if she might qualify and be enrolled to receive an experimental drug.
On the way I had the GPS guiding us and Mom said, "She (meaning the GPS) has a nice job sitting on her butt for 6 hours telling us where to go. I wouldn't mind that job." In response I said, "Mom how do you suppose she knows where we are?" "Oh I don't know maybe she can hear us." I then said, "What do you think that woman looks like?" "I don't know and I don't care. She probably looks like hell!" I chuckled all the way to our destination.

Of course mom did not score high enough on her mini mental status exam to qualify for the study as I predicted knowing what score she needed. I had hoped coming in they might remember mom and if another opportunity presented give us a call. Sara the nurse said she would definitely remember mom as she made her laugh which made her day. I said, "Yes she makes everyone laugh."

National Marrow Donor Program

Today I received an update regarding the National Marrow Donor Program in the mail. I added my name to the registry over 10 years ago after watching a show where a family was trying to find a match for their child. I have never been called to donate but my blood type remains on file in case I'm ever needed. Knowing how a devastating illness affects the family I am encouraging all who might read this to join the registry at BeTheMatch.org.

Alzheimer reading room

I wanted to share with you the below link which is a wonderful resource for Alzheimers written by the son of an Alzheimer patient. I encourage you to check it out.

Alzheimer's Reading Room

Alzheimer's Reading Room

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Alzheimer Study

Today we visited Jackie at Dr. Patel's office to participate in a Alzheimer study which hopefully will be of some help to families someday going through the same thing. On the way mom said, "I don't want to go to the Dr. and if she asks I will say I feel rotten.....just joking!" Jackie asked us many questions to which I answered most. When Mom did answer she usually did so humorously such as to the question, "Have you fallen in the last 3 months" to which mom replied, "No..............................................because I don't drink." My part included a questionnaire which took me approximately 15 minutes to complete asking all types of questions regarding Mom's care and it's impact on me. Funny, another time I might have answered less positively, but for today I feel good.