Living in the moment with Lilybird

Halloween 2009

2011-10-31T08:00:00.001-04:00

Running Shorts

2011-09-26T17:27:00.000-04:00

Recently after running I stopped by to pick Lily up for the day in my running shorts. She looks at me, slaps me on the rear, and says quite smartly,

"Isn't that a little short for a 65 year old woman?"

Only funny if you know I am only 54 years young, lol. Of course, she still thinks of me as her older sister.

possible link between Alzheimers and Cold Sores

2011-09-17T08:58:00.000-04:00

I have wondered about this connection for sometime now. I have also wondered if there is any connection with Shingles. I do know Lily had occasional cold sores. Never shingles as far as I know.

http://www.oprah.com/health/A-Link-Between-Alzheimers-and-Cold-Sores/1

Homecoming 08

2011-06-23T09:46:00.000-04:00

Back when Lily was still doing her eyebrows!

Glen Campbell I Have Alzheimer's

2011-06-22T17:38:00.000-04:00

Glen Campbell I Have Alzheimer's

By Bob DeMarco Alzheimer's Reading Room

More Insight and Advice for Caregivers

Communicating in Alzheimer's World
What’s the Difference Between Alzheimer’s Disease and Dementia
How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
What is Alzheimer's Disease?
What is Dementia?
Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
Advice and Insight -- Alzheimer's Reading Room
Dementia and the Eight Types of Dementia
Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes
The Mini-Cog Test for Alzheimer's and Dementia
Alzheimer's Disease, Urinary Tract Infections, Urinary Incontinence, Poop (8 Articles)
100 Good Reasons to Subscribe to the Alzheimer's Reading Room Now

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems

The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content Bob DeMarco, the Alzheimer's Reading Room

October 2009

2011-06-11T16:36:00.000-04:00

Maybe I'm Right, Maybe I'm Wrong, Loving You Dear LIke I Dooooo

2011-05-27T10:56:00.000-04:00

December 2006

2011-05-16T08:00:00.000-04:00

Emily & Lily

Memories

2011-05-15T20:18:00.000-04:00

Going through photos. This was from 2005 following one of Emily's recitals.
me, Chris, Lily, Jenny, Emily, Dan, and Ryan.

Kind of makes me sad......

My Name is Lisa

2011-05-14T04:02:00.000-04:00

My Name is Lisa

By Bob DeMarco Alzheimer's Reading Room

More Insight and Advice for Caregivers

Communicating in Alzheimer's World
What’s the Difference Between Alzheimer’s Disease and Dementia
How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
What is Alzheimer's Disease?
What is Dementia?
Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
Advice and Insight -- Alzheimer's Reading Room
Dementia and the Eight Types of Dementia
Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes
The Mini-Cog Test for Alzheimer's and Dementia
Alzheimer's Disease, Urinary Tract Infections, Urinary Incontinence, Poop (8 Articles)
100 Good Reasons to Subscribe to the Alzheimer's Reading Room Now

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems

The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content Bob DeMarco, the Alzheimer's Reading Room

Happy Mothers Day Lily!

2011-05-08T08:00:00.000-04:00

My Hero ~ Elizabeth Patricia O'Callaghan Gehrke (Lily)

(previously posted 11/3/10)

Looking back at my journey with Lily I have to say dealing with my mother 3 to 4 years ago was much tougher in some ways than the last year has been. Although she was more independent then, meaning less work for me, she was more emotional, moody, and mean. I wonder about that now and think perhaps it was due to a number of things not with just her, but also with me such as:

-me struggling to accept the diagnosis and what it would mean to herself, myself, and our family
-her picking up on my feelings and reacting to them

-me trying to reorient her to reality even though I knew better
-her trying to cope with her diminishing abilities

-me trying to include her into my world and routine
-her hanging on desperately to what was left of her world and routine

-me trying to control too much
-her trying to maintain her independence

-me being able to let the small things go
-her just trying to continue to do the small things

-me learning to find humor wherever possible and encouraging her to laugh
-her dealing with uncertainty, loss, and depression with all the changes

-me learning to live in the moment and enjoying all that is left
-her trying to remember the lost moments

-me dealing with not very helpful family members
-her missing the people who were part of her old life

When I compare the two lists I would much rather be on my end. It brings tears to my eyes thinking of all my mother has had to work through and all her losses. Yes, there have been numerous hidden blessings, but even with all those I would still rather my mother have kept her cognitive abilities. That obviously was not God's plan and we must roll with what we are given.

I am proud of myself and my family for putting a positive spin on this unforgiving disease, but most of all I sincerely admire my mother for her continual fight maintaining her positive spirit and her relentless get up and go, never giving up. As hard as it is on the caregivers we must never forget all our loved ones have lost.

MOM YOU ARE MY HERO!

Alzheimer's: Diabetes of the Brain?

2011-04-23T20:24:00.001-04:00

Although we’ve always known that Alzheimer’s disease is typically associated with numerous tangles and plaque in the brain, the exact cause of...

Happy St. Patricks Day

2011-03-17T08:00:00.001-04:00

Lily's Lulus

2011-01-27T16:01:00.000-05:00

"Look they are all old. One is as old as the next."

"Mom, You are old too."

"I don't give a damn."

Shoulder pain

2011-01-25T19:08:00.001-05:00

I have found it difficult to blog here lately as we do not have internet at our house which makes it much harder to post and we have been very busy trying to do a few things around the house.

I did receive a call from Mom's nurse today and she was seen by the nurse practitioner for her shoulder which has been hurting her the last couple of weeks.

I believe she fell as she also had an abrasion on her knee. Of course she couldn't verify this.

She started to complain of her shoulder a couple of days after I noticed the abrasion on her knee which made me wonder if she perhaps jammed her shoulder when she fell.

The nurse practitioner ordered a shoulder xray and started her on a pain patch for a few days. I really hope that does not affect her cognition.

I will try to get to Panera more often but it is a good 20 minutes from our house.

Florida

2011-01-20T18:49:00.000-05:00

Well we made it. Dan and I arrived Sunday evening to Ponce Inlet south of Daytona Beach after driving all day. We actually made pretty darn good time even with pulling a large trailer full of Dan's tools to work on our house.

The trip down was good and took my mind off the distress I was feeling leaving our Ohio home, Lily, Ryan, and friends. I was surprised by my feelings not expecting to be so out of sorts. I knew I would miss Mom and be worried about her while gone but the other feelings of uncertainty took me by surprise.

I guess just knowing we would be gone for at least 6 weeks and the feeling of our family being scattered across the country--Emily in Tucson, Ryan and Lily in 2 different cities in Ohio, and Dan and I in Florida made for some very edgy feelings ruminating through me.

The morning after we arrived it was pouring rain and quite chilly with the inside temperature being 59 degrees, the vegetation overgrown, and remnants of dead bugs through the house. I thought to myself, "And this is what I have been looking forward for years?" Even Dan was a little put off.
\
However, once we got the furnace fixed, a warmer house, the floors vacuumed and the rain slowing in the afternoon, we both started perking up.

This morning with the sun out in full glory we walked the beach enjoying the warmth and breeze, I remembered why I wanted to be here.

My neightbor Anne will be visiting Lily and plans to call me so I can talk to her. I am hoping she is doing well which also will be a huge relief.

Only Lily

2011-01-18T08:00:00.001-05:00

Be sure to watch till the end.

Dumb Ass!

2011-01-17T08:00:00.000-05:00

Lily and I were leaving the Memory Support Center to head home and were approaching our car. I said to her go ahead and get in. Just as she was trying the door it occurred to me that I did not drive our SUV and that was not our car.

I started laughing and said, "That is not our car."

Lily quickly pulled her hand back, started laughing and said, "Dumb Ass and you think I am stupid. (I have never said that by the way) Dumb Ass!"

So I directed her to the next car over and said, "That's it. Get in."

She looked at me waiting for me to open my door and said, "You get in first. I'm not falling for that one again."

We were laughing together all the way out of the lot.

Music Therapy

2011-01-16T08:00:00.001-05:00

I love this!

Happy 19th Birthday Ryan!

2011-01-15T22:35:00.000-05:00

Playing the drums

2011-01-14T08:00:00.001-05:00

Isn't music therapy wonderful?

German Saying 2010

2011-01-12T08:00:00.001-05:00

This video was taken on Thanksgiving Day. The video quality is poor, but the audio quality is good. What is important here is how well Lily has retained this saying in her memory.

Lily leading music therapy

2011-01-11T20:20:00.001-05:00

Miles that Matter gathering

2011-01-10T21:25:00.000-05:00

Miles that Matter, my running group, had a social event this past weekend. Dan & I brought Lily and everyone made such a fuss over her making her feel so welcome. I have to hand it to her I could tell by her eyes she had no clue who all the people were coming up and greeting her by name, but she just rolled with it talking to them as if she had known them for years.

In the photo is my friend Denise who follows my blog faithfully and was so happy to see Lily.

Alzheimer's can open windows and doors

2011-01-07T20:00:00.000-05:00

I had a curious thought today as I passed by Mom looking happy and content sitting in the dining area with the other residents.

The thought came to me I wonder if Alzheimer's disease has allowed her to lower her guard letting her be the person she might have been if life had not thrown her some curve balls.

I believe Lily was a happy carefree child spoiled by elderly parents as the baby of the family growing up in Ireland. She was often told she looked like Shirley Temple with her curly red hair, blue eyes, and I have to believe a charming, mischievous personality. I often look at my own son and wonder if Lily was like him because he is similar to her in many ways.

I know as a young girl Mom loved going out with her friends to dance halls and loved having fun and laughing. From the best I can tell I do not think she took life too seriously or gave it much thought.

When the opportunity presented to come to America where the streets were paved with gold she jumped on it which showed to me that she had courage and optimism among her character traits.

I believe her fun loving personality prevailed through marriage and kids enjoying coffee chats with the ladies of the neighborhood. She was definitely the social half of the marriage as my father was an introvert with the stereotypical engineering personality.

Life was good until 1965 when my father committed suicide leaving his bride with 3 children, ages eight, seven, and one. Lily's life was turned upside down and so I believe was her personality.

My family in 2010 in front of the house in Seattle where we lived when my father died.
Lily and my father Norb spent many hours building the rockery
which also has 3 levels behind the house.

From this carefree fun loving girl full of life and optimism to a widow with all that entails in a blink of an eye. Her life changed.

Besides obvious devastating grief came shame and embarrassment. Lily's inclination was to flee and she did quickly selling her house and moving us to Ohio where nobody but her sister knew the real story. Not even my brother and I knew being told my father died of a heart attack.

With the move the walls went up guarding ever so closely this horrible shameful secret of a husband who did not love his wife or family enough to hang in there.

No longer was Mom the same nor ever would be. Forever more she kept friends and family at arms length. She became bitter, pessimistic, and negative. I don't remember ever being kissed or hugged by my mother.

As you can imagine life in our household was not a happy affair. We all just trudged on going through the motions. Eventually, of course, the children forged their own paths and Mom stayed on course until she moved to SC at my sister's urging who lived there.

That was ten years prior to her diagnosis and probably six years before she started showing noticeable symptoms.

In SC I believe a change occurred with mom. Perhaps due to a change of scenery, a warmer and sunnier climate, or just a new beginning, but she became more cheerful. She still did not develop any close friendships, but did develop a rapport with the neighbors. She spent hours outside in her garden which she loved when the weather was nice.

Although still very much alone she did not appear as lonely as she had in Dayton.

As the Alzheimer's took hold, the last year was bad, but prior to that SC was a blessing for her.

The three years with us were wonderful as she lived in our family interacting, giving, and receiving love. Slowly I noticed the walls coming down.

In the Memory Support Center I believe she is enjoying the hub bub, the activities, the staff, the residents, basically just the joy of feeling like you belong. She feels safe, secure, and freely gives her affection to others. She frequently is touching, hugging, laughing, smiling, and interacting.

Alzheimer's is a terrible disease, however I do believe in Lily's case losing some of those horrible memories has allowed her to blossom back to her original happy and cheerful demeanor in ways she might never have again without developing it. Hidden blessings have definitely emerged.

Thinking about this I am sure perhaps the opposite has occurred where the affected person has lost wonderful memories leaving perhaps a bitter unhappy person.

That is the thing with Alzheimer's, there are many similarities such as impaired memory and judgment, but the affect on personality and demeanor is different in each case. Perhaps because each person's personality is unique to them.

With Lily the losses from the disease allowed other windows and doors to open in ways we could never have predicted.

"Life is like a box of chocolates. You never know what your gonna get." Forrest Gump

Two generations of models

2011-01-06T21:35:00.000-05:00

Interestingly, both of my children have had the opportunity to model through their respective activities--basketball and dance. Recently Lily was asked to model a wrap at the Memory Support Center during their recent Christmas party.

As much as she likes attention you would think she would be a natural. She was not and was very uncomfortable being photographed. The photographer had to take several shots trying to get her to look straight ahead and smile. I could only shake my head and laugh.

Ok let's try again

Finally!

Christmas at the Memory Support Center

2011-01-06T21:04:00.000-05:00

Exercise is a bunch of crap

2011-01-05T08:00:00.000-05:00

Recently the Memory Support Unit received a exercise bike donated to them from a resident's family. It has sat there for about a month and I finally put it to good use today.

I hopped on and gave Mom a demonstration of how it works. Then I helped her on as she was saying,

"I'm not going to do that?" "Did you buy this?" "What did you pay for this?"

Soon I had her pedaling away.

After about 30 seconds she was saying,

"Ok I'm done. My legs hurt."

"This is a bunch of crap."

I coaxed her to continue for 3 minutes which was my goal for today. She went almost 1/2 mile according to the dash.

Of course she complained the whole time but I also think she enjoyed the attention.

The activities department is supposed to be setting up a program for it so I am hoping while I am in Florida they get Lily on it.

The house is quiet again

2011-01-04T17:50:00.000-05:00

Emily and Ryan are both back in their respective home away from homes. One happier than the other. Ryan is excited and happy to be back at school with his friends. Emily not so happy. She had a wonderful time back home which I think made it all the harder to head back to AZ where she still is struggling to make friends. I keep assuring her the next six months will be better so I hope that is the case.

Dan & I are enjoying our empty nest and getting prepared for our trip to Florida in a couple of weeks. I am enjoying the quiet and the comfort of my routine.

I visited Mom today and gave her a mani and pedi while we watched Dr. Oz. I also had her on the exercise bike for the first time for 3 minutes. I will post a picture and blog more on that later. She was in good form as usual.

Update

2011-01-03T17:39:00.000-05:00

Lily is feeling better but still has a sore upper right arm. She was in good spirits this morning when I was there visiting her and she seemed happy to join the group in music therapy.

As for Emily's purse we received a call late the following afternoon that her purse had been found. The woman from Springfield said her daughter was walking to her grandmother's house and found Emily's purse and contents along with another purse in the creek. This young girl was kind enough to pick up all the contents and call me.

Ironically when I had been out in Tucson visiting Emily in November I had insisted she put an index card in her purse and car with emergency numbers on it and that is the card that enabled them to find the owner of the purse.

We drove that evening out to Springfield to pick up the purse from the nice family who found it and discovered that the other purse was not Emily's friend Jordans. Searching through that person we found that the owner was an Elaine K.... from Columbus Ohio.

On the way home I searched through Elaine's bag and found a sheet of phone numbers she had listed and called her at home. She informed me that she, her husband, and a foreign exchange student from Indonesia had been out hiking the same day as the girls and their blue VW was also broken into. However, not only was her purse taken, but their luggage (they were in town visiting their daughter) and their foreign exchange student's bookbag.

She said that earlier that day they received a call from someone else in Springfield because their exchange student's bookbag was found on a street. The thieves had left his Indonesia ID in the bookbag thankfully.

While in Springfield they decided to drive around on their own and found another bookbag with a bunch of books in it which they turned over to the police.

We made arrangments for Elaine to come the next morning to pick up her stuff. In the meantime when we arrived home I spread out all the contents of both Emily's and Elaine's purse on towels to dry. All their misc stuff was present along with their credit cards. The only items missing were their licenses, giftcards, and money. Neither of them had much money in their purses. The thieves did not take the student's graphing calculator which just shows how smart they were.

Of course, the keys to our car were still in there after we just spent $200 to have a new set made and unbelieveably they still worked after getting all wet.

Emily's leather purse also dried out pretty well and you would never know it had laid in water for awhile.

The next day Elaine, her husband, and the student from Indonesia came. They were very pleasant and the student was very cute. He kept taking pictures of our Christmas tree and nativity scene as he was Muslim and not familiar with these things. Apparently Elaine and her husband do not celebrate Christmas.

They were very appreciative that I laid her pictures, cards, and other items out to dry. One of them was a paper with words in other languages. She said that was the word butterfly written in every language of places she had visited. Her husband also let drop that her sister is married to the Nobel Peace prize winner from last year?? They apparently were in Switzerland to visit when he received his award. He said he was very proud of that as he was the one who sponsored him from India. They were a very interesting couple.

Anyway we reported the find to the police and that is the last we heard about the incident.

Lily sick, purse stolen

2010-12-29T16:17:00.000-05:00

Mom has been a little under the weather the last couple of days with a virus. At our family Christmas gathering a couple members of the family were not feeling up to par and that is probably where she caught her cold.

Also she must have fallen Christmas eve morning or the night before at the nursing home as she had a fresh abrasion on her knee Christmas eve morning when I helped her take a shower here. She complained of nothing hurting her and had no other bruising or abrasions. Of course she could not remember the incident.

Two days later she was complaining of her upper right arm hurting her so I wondered if maybe she jammed that shoulder when she perhaps caught herself when falling a couple days before. I am only speculating.

I have not seen her today as my car is in the shop getting a key made for it as Emily had her purse stolen yesterday which had the car keys in it. Naturally we only had that one key. A new key cost $200!

What happened was Emily and two of her dancer friends went to Yellowsprings to hike at Clifton Gorge. They left their purses hidden inside the car and someone broke out the window to steal both purses and the GPS. Another car was also vandalized.

When filing a police report the police said the same thing had happened now for 3 days in a row. Wouldn't you think they might decide to do something. Apparently they did not want to post a sign as they thought it might keep people away. I don't know, I kind of think having your car window broken and purses stolen would definitely keep people away as opposed to a sign warning to keep all valuables with you. Common sense.... does it ever prevail?

Fortunately Emily did not have any money in her purse but did lose 2 gift cards from Starbucks and Trader Joes. Her friend lost several gift cards as well. Both girls canceled their credit cards and had to get new drivers licenses today.

So our biggest expense is the car keys but I guess it could have been a lot worse because she could have had her keys for her apartment and car in AZ in it which fortunately she did not as she just had changed purses.

So now both of my children have been the victim of theft in the last 3 months.
Bah humbug!

Seven O'Clock

2010-12-26T08:00:00.000-05:00

Driving home from the airport with Emily, Mom looking out and seeing it dark said,

"I don't know if my Mom will be up when I get home."

"Nana, it's only seven o'clock."

"Well, where I come from they are all in bed at seven o'clock."

Emily quickly replied, "That's because they are all old farts." which made Lily laugh.

And you know she is right, many of the folks at Bethany are at least in their rooms if not in bed by seven o'clock! I wonder if that is where she was talking about..........

Merry Christmas!

2010-12-25T08:00:00.001-05:00

Emily is on her way home

2010-12-24T20:56:00.000-05:00

Emily is flying home today from Tucson for a 10 day visit. We are all so excited to have her back with us and I know she can't wait to get back. She is to arrive at 6:30pm and hopefully the weather coming in will hold till she gets in.

Lily has even remembered this week that Emily is coming home and will be here to greet her as we are having Lily spend the night in her old room tonight. Hopefully, that will go well and she will adjust like old times. Time will tell.

Merry Christmas Eve!

2010-12-24T08:00:00.002-05:00

me, Lily, and my brother Tim

Does love slow Alzheimer's disease?

2010-12-23T22:56:00.000-05:00

Recently Bob DeMarco asked this question on his site The Alzheimer Reading room http://www.alzheimersreadingroom.com/2010/12/alzheimers-caregiver-love-quotes.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+TheAlzheimersReadingRoom+%28Alzheimer%27s+Reading+Room%29

This is my response.

Does caregiver love slow Alzheimer’s? Interesting question.

I suppose indirectly it does because when you love someone you want the best for them. You want to treat them like you would like to be treated. You want to make them happy and you want to see them smile. You want to hear their laughter and see that sparkle in their eye.

To do that you must interact with them, stimulate them, touch them, encourage them, and support them.

So is it the love or is it the stimulation that actually slows Alzheimer disease? Probably both.

Looking at infants it has been proven that without touch infants do not thrive. Even with animals a mother’s licking of her cubs is vitally important to their growth.

Not only is touch good for the body, it appears good for the mind. Studies show that newborns receiving extra touch display greater neurological development. Researchers believe that touch promotes the growth of myelin, the insulating material around nerves that makes nerve impulses move faster.

Perhaps with the Alzheimer’s patient touch does much more than we realize.

And I suppose without love and affection there would be little touch and stimulation.

Comments welcome.

Supposedly Cat

2010-12-22T18:23:00.000-05:00

This cat which Mom actually gave to me probably 20 years ago sits in her room under a chair. This is a recent conversation about her.

"That is supposedly a cat."

"She is heavy as hell. It's too bad she can't walk."

"I like her though. She is cute."

"She is supposed to be a cat but you can't lift her."

"Too bad she can't talk."

"And she hasn't ate anything in a year."

Spices good for your brain

2010-12-21T08:00:00.001-05:00

I was reading recently an AARP article talking about several spices which research shows help the brain.
I am trying to incorporate several of them in my diet just in case they really do help my brain function.

Tumeric A university study showed that curcumin, the active ingredient in turmeric, which gives curry its yellow color broke up brain plaques of amyloid beta, the abnormal protein buildup in the Alzheimer brain.
Ginger A combo of ginger and feverfew staved off migraine headaches. It is also an antiseptic and antioxidant, great for digestion and burning of calories.
Garlic May fight brain cancer and has many heart healthy benefits
Cinnamon speeds the rate at which your brain processes visual cues. It regulates blood sugar levels which helps you stay focused. May help patients slow or prevent Alzheimer's disease.
Saffron twice daily dose of this herb works as well as prozac in treating mild to moderate depression.

A while back I placed Lily on cinnamon as I had read that it helped stabilize blood sugar and perhaps help with cognition and slowing of the Alzheimer process. I feel the cinnamon did help mom but of course this is subjective and could be coincidental but at this point what do we have to lose?

Conversation with Emily

2010-12-20T12:23:00.000-05:00

Lily talks to Emily in Tucson usually at least once per week by phone. A typical conversation goes like this,

"Any boyfriends yet?"

"No, Nana."

"Why not? What's going on?"

"What would you do?"

"I would talk with them, laugh with then...............But you will be all night with them and I wouldn't like that. I don't know him."

"Me neither, Nana. That is the problem."

"You should get married. People do that you know."

Brownies caroling

2010-12-19T16:11:00.000-05:00

Today Lily's great granddaughter Hannah's brownie troop caroled for the residents in the Memory Support Center. All of them seemed to really enjoy the young girls singing, but I have to say Lily really got into it. She was smiling, singing at times, clapping, and broke into a dance with Caleb, her great grandson.

The girls sang a very cute and funny rendition of the Twelve Days of Christmas. In this number each girl would step forward to sing her line. At Hannah's turn she stepped forward singing, "I have to go to the bathroom," and Lily broke out laughing out loud.

The girls ended the singing with We Wish You a Merry Christmas and passed out homemade cards to all the residents.

Hannah next to the girl in the green hat

Lily enjoying the singing

"I have to go to the bathroom!"

dancing with Caleb

Lily's bracelets

2010-12-16T22:56:00.000-05:00

Lily showing me the Christmas bracelet the residents made with the activities staff.

and on her other wrist was her bracelet with the unit monitor which I had to redesign as her old one broke.

Lily's LuLu's ~ One Bed

2010-12-15T08:00:00.002-05:00

On one of the many vacations we took with Lily, we stopped in South Carolina and requested two hotel rooms. The hotel did not have any double bed rooms left 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 "Lily".

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 the bed with the "girls" and wrapped his arms around his grandma saying, "Nana, I'm going to sleep in bed with you tonight."

Agreeing that the bed would be much more comfortable than the floor, Lily turned to him and said,

"BUT DON'T TELL MY MOM!"

(I don't have a picture of this but the picture I do have gives you some idea of how this might have looked.)

Joys of Winter

2010-12-14T08:00:00.000-05:00

A military family in distress

2010-12-13T01:00:00.003-05:00

My running buddy Denise suggested to me that I should share this story on my blog with an appeal to my readers for well wishes and support for my friend Tammy and her family.

Tammy, George, and their 3 children have given so much of themselves to their country. Both George and their oldest son are in the military. George just came back from being deployed in Afghanistan and their son is presently serving there now.

I am sure Tammy, as any mother and wife would, has spent many a sleepless night worried over the safety of her husband and son while they have served overseas in combat.

Who would ever have predicted their middle child twenty year old Justin, safe here in the USA, would be killed in an automobile accident last week in Phoenix where Tammy was raised and her parents still live.

Tammy had just opened up an antique store in Waynesville and spent weeks preparing for the big Waynesville holiday weekend. She was at her shop when her husband George had to deliver the devastating news. So instead of tending shop and looking forward to the holidays, she and her family headed out to Phoenix to bury their son and brother.

Being a military family George and family have limited connections in the Dayton area having only been here about one year so we (the neighbors) are rallying to fill a basket of well wishes and shower them with cards.

If any of you out there would care to send them a card to let them know this community cares, please forward to me addressed to Tammy and George at 1193 Timberhawk Trail Dayton Oh 45458.

Pictures from the Caregiver's Ball

2010-12-12T22:34:00.000-05:00

The Alzheimer's Association gala which was dubbed the Caregiver's Ball was a lovely event providing food, music, fun, and fellowship.

Initially I thought it was an event only for patients and families from the retirement village but it actually included Alzheimer patients and families living in the community and associated with the Alzheimer Association.

The event was the brainchild of a man named Erik who had always dreamed of hosting a Caregiver's Ball and his dream came true this night. He hopes to make this an annual event.

Seated at our table was a couple named James and Ethel whom we enjoyed pleasant conversation. James was a handsome 63 years old man who had been diagnosed 3 years prior with Alzheimer's. Initially he was quiet and a little withdrawn, but as dinner progressed he smiled more often and pounded the rock (hitting knuckles) with Ryan several times. His wife, Ethel, a beautiful elegant woman, works full time and spoke very highly of the Alzheimer Association and all that she had learned through them from their caregivers series. I also learned from her that there is an adult day care center north of town that does offer evening and weekend hours which is wonderful. That is the only one in town that I know of offering alternative hours. Since she works for an organization requiring evening board meetings this has been a life saver to her as their children live out of town.

Following dinner we adjourned to another room for music and dancing. Below are some pictures from this magical evening.


looking at Xmas cards while waiting for Dan and Ryan

What's this?


Oh a little wine?

You're here......


Off we go

The Band

The belle of the ball dancing with Ryan and Dan.

Meet me under the Mistletoe

2010-12-10T16:02:00.001-05:00

My wedding pictures 1983

2010-12-09T20:00:00.000-05:00

Wow! Don't we look young.

Lily and her best friend Nita


Lily all dressed up

Always the center of attention and no that is not her crutch.

Admiring the flowers in the dining room

2010-12-08T20:22:00.000-05:00

The 24 residents live in a pod of private rooms with 2 dining halls which each seat a group of 12.

It's beginning to look like Christmas

2010-12-07T20:26:00.000-05:00

Greeting Ryan at Thanksgiving break

2010-12-06T12:43:00.000-05:00

RYAN!

Visiting in her room

Awwwwww!

First Snow of the Season

2010-12-04T16:05:00.000-05:00

Lily's Favorite German Saying Take 2

2010-12-03T10:48:00.000-05:00

Found this second video of Emily recording Lily's favorite German saying. Had to post it!

AFA to Hold the Nation's First Alzheimer's Disease Telethon December 4

2010-12-02T08:00:00.001-05:00

Alzheimer Reading Room has a great article on an upcoming telethon to raise awareness and funds for Alzheimer's disease. I say, "About damn time!" Follow the link below for further information.

AFA to Hold the Nation's First Alzheimer's Disease Telethon December 4

Does your exercise history play a role in developing Alzheimers?

2010-12-01T23:11:00.003-05:00

When I reflect on the article I posted yesterday regarding the correlation between exercise as a teenager and cognition in later life, I think back to the amount of exercise I received as a youngster growing up in USA verses Lily growing up in Ireland.

Looking at different stages in my life exercise was never structured until I started sporadic exercise programs, ie. jazzercise, yoga, etc., in my twenties.

Growing up in the Seattle area till age 7 where the weather was temperate and the TV limited I am sure I spent most days outside riding bikes, following creeks, and playing with other kids.

Once we moved to Dayton at age 7 the cold winter weather limited exercise to sledding on snow days and indoor play for many months out of the year. I was never involved in any sports except one summer I played softball till the ball hit me in the eye and that was the end of that! Of course, during the summer months I was outside from morning to dinner often skipping lunch, so much so, I started to become faint probably from low blood sugar and Lily insisted I come home for lunch.

My time as an early teenager was probably my most sedentary period when I was "too old to play." Other than gym class I did do some random jobs such as raking leaves, babysitting, and cleaning which provided some exercise, but not until I started to work at McDonalds did my activity pick up.

Other than work, in my later teens I participated in little exercise which was unlike my own children who throughout their childhood and teen years participated in organized sports and dance receiving at least 10 to 20 hours per week of exercise.

In my 30's and 40's I usually walked my dogs everyday at a brisk pace and participated in random exercise classes.

Not until age 50 when I started to run marathons did I start regularly exercising with high intensity and continue that till this day.

Now Lily on the other hand grew up in Dublin in the city till about age 5 and then moved out to the country where she lived on a farm till about age 14. I know she used to always say she had to walk 5 miles to and from school each day. Didn't we all hear that from our parents? Lily was known to exaggerate so whether the 5 miles is true or not we can only surmise.

Lily did not participate in any sports so other than walking and playing as a child that would be about it. I know she was the baby and was spoiled so she did not have to do many chores (this tidbit directly from Mom years ago). Hard to believe that happened in Ireland on a farm back in the 30's.

Lily moved to England to be with her sister in her late teens and worked in a hospital while there as an aide so I am sure her late teens and early twenty's were a little more active. She also spoke of going out to the dance halls in England with her girlfriends. Other than dance, walking, and work that would be it for exercise.

Lily often said exercise was a bunch of crap and would never participate in it. She would say something like, "Why should I do that and make myself hurt all over?" She admonished me often for exercising telling me I would hurt myself.

She became a widow at 32 and once the kids moved out she took care of the yard and house by herself which was her only source of exercise and not a small job I might add. In her 60's and 70's she loved to garden and would spend all day outside in good weather playing with the dirt and plants.

So if the assumption in that article is correct my children should be good as long as they don't become slugs in later life.

As for me I wished I exercised more diligently before age 50.

And Lily.... I guess she fits the premise of the article and did get Alzheimer's. Other than normal household activities she did not participate in any form of exercise nor did she ever take daily brisks walks. However, with that said, I suspect growing up in Europe that she walked everywhere receiving more exercise than would be normal for here which does not bode well for the young people these days who do not participate in organized sports or exercise classes and spend a good deal of time with tv and video games.

As I have said before I personally feel exercise is the best defense against or at least slowing down this disease. I feel if nothing else exercise gets the juices flowing protecting the pipes from a build up of rust and that has to be a good thing. Right?

Please feel free to comment on the exercise profile of your loved ones with this disease and how you feel exercise might have affected them..

Teenage exercise lowers risk of later life dementia

2010-11-30T15:02:00.003-05:00

Recently an article was published in the local paper by Marjie Gilliam an international Sports Sciences Master certified personal trainer entitled "Exercise may lower risk of dementia." I will briefly summarize the article.

Studies show men and women over age of 65 that exercise at least 15-30 minutes at least three times per week were less likely to develop Alzheimer's disease even if they were genetically predisposed to the disease. "Although women who are physically active have a lower risk of cognitive impairment in late life compared to those who are sedentary, physical activity during teenage years appears to be most important in reducing this risk of cognitive impairment in later life."

How surprising that this study published in the Journal of the American Geriatrics Society found being physically active as a teenager is most important in preventing cognitive impairment. The research also found that the women who didn't exercise as teenagers but became physically active at age 30 and 50 had significantly reduced odds of cognitive impairment relative to those who remained sedentary.

There is evidence to suggest that exercise has a positive effect on brain plasticity and cognition while reducing the rates and severity of vascular risk factors such as high blood pressure, obesity, and type 2 diabetes., each of which are associated with increased risk of cognitive impairment.

"Low physical activity levels in today's youth may mean increased dementia rates in the future."

Quote for the day

2010-11-29T21:57:00.000-05:00

Before we pass judgment on others, before we lecture or scold, Dr. Montessori asked us to stop and answer these three questions about our own words:

“Is it true? “

“Is it necessary?”

“Is it kind?”

Picking Lily Up

2010-11-28T08:00:00.001-05:00

My son Ryan is home for Thanksgiving. This morning he went to pick up Lily to bring her home. When they arrived home, I said, "Mom were you excited to see Ryan?"

"Yes, I couldn't believe he came to my school to pick me up." she said with a big grin on her face.

"I guess he just couldn't wait and when I saw him I just about flipped."

Bell Choir

2010-11-27T22:28:00.000-05:00

Fascinating video of dementia patients at the Memory Support Center playing the bells. Yes, hey are clued in by the leader but I am amazed how well they respond and how good they sound.

If you look close you will see Lily acknowledging me at the beginning of the clip. Towards the end of the clip Lily is spurring her neighbor on when she wasn't quick enough with her bell.

Amazing the wonder of music with the memory impaired.

HGTV

2010-11-26T08:00:00.002-05:00

Captured on this video is my sister-in-law Paula telling Lily about her experience watching HGTV. This story has been told to Lily almost every time the two of them get together. Lily loves this story and her reaction is almost identical each and every time she hears it.

Giving Thanks

2010-11-25T08:00:00.025-05:00

Soon after mom came to live with me I thought often of writing about her and all we were going through. At that time though it was hard for me to find the humor in the situation. Learning to deal with another family member in your house takes some getting used to and not just for me but the rest of the family.

Looking back at the first year and the year prior to that I really only remember the hard times and the very difficult circumstances we had to work through dealing with trying to help her long distance over the phone with:

taking her medications daily
trying to find help getting her pill box set up
dealing with nursing agencies who did not understand how to deal with an Alzheimer patient
dealing with mom calling crying on the phone that she couldn't find her cat or her cat was sick or she was sick
she couldn't find her purse or
dealing with difficult family members who did not understand, were not helpful, and actually made things much harder for me

and..................the list goes on.

I drove to SC every few months to check on her and bring her back to Dayton. Initially she would stay with us for a couple weeks and that grew to about 6 weeks and, of course, eventually she moved in.

Gradually things got better or perhaps we just learned to adjust. Learning to look for the humor in the situation helped immensely. And that is where blogging came in to the picture. I am thankful every time I think of how blogging has changed my life.

I am thankful for my friend Robin who after vacationing with me and Lily encouraged me to begin.

I am thankful for Bob Burkle who gave me such an uplifting comment at the beginning of my blogging which was a great motivator.

I am thankful for the friends that encouraged me after I began--
Leigh Ann, Paula,Anne, Linda, Sande, Terry and Lynn.

I am thankful for my friend Bob DeMarco at the Alzheimer Reading Room http://www.alzheimersreadingroom.com/who has set a high standard for me to aspire to and has encouraged me greatly along the way. I also appreciate the many comments I have received from my posts published on his site.

I am thankful for my new friends in the blogging community such as
Judy http://chrissysmoments.wordpress.com/,
Debbie http://debbiesdailygarden.blogspot.com/, and Karen http://karensfavoritephotos.blogspot.com/ who leave frequent comments on my posts. Comments mean so much as they validate what you write and keep the juices alive.

I am thankful for Denyse (my miles that matter friend) who has been my number one fan and a great energy boost for me.

I appreciate all the followers of my blog and the anonymous comments I have received and those from people such my former neighbor's mother Cindy.

I am thankful for Nienie's http://nieniedialogues.blogspot.com/ stories of her family and the challenges she faces each and every day..

I am thankful for the inspiration I receive from the bloggers who are living the disease in a much more personal way such as Mike Donohue http://im-mike.blogspot.com/, Sue Scoggins http://suescoggins.com/blog, and Karen http://henleysheroes.blogspot.com/.

I am thankful for cousin-in-law Sue who is a fabulous writer herself and so encourages me and gives me wonderful feedback on my pieces.

I am thankful for my wonderful family who are there for me and have helped me so much with Lily along the way.

Yes, blogging has added so much to my life and without Lily none of this would have have happened. I am thankful for the opportunity to make something good out of an unwanted situation. Kind of like the proverbial make lemonade out of lemons.

Lastly, I want to thank God for all he has brought into my life and the grace and mercy he has shown me.

I wish all of you a very wonderful and blessed Thanksgiving with your family and friends.

Thanksgiving 2009

2010-11-24T08:00:00.005-05:00

With Thanksgiving upon us, I looked back on video from last year when we go around the table telling what we give thanks for. Lily needed a little bit more prompting than usual with the family teasing her along the way.

Exercise Improves Cognition

2010-11-23T08:00:00.001-05:00

I have a close friend out in Colorado who is the Director of the Cardiac Rehab Program at a hospital near Denver. She recently was telling me about a middle aged male patient diagnosed with early Alzheimer's who came in following a cardiac event for rehab.
His doctor had ordered a minimum amount of moderate intensity sessions for him to complete.

When he first started the staff had to apply a safety belt and stay with with him constantly repeating instructions to his repetitive questions and watching to be sure he did not change the settings. He was not appropriate and initially they were questioning his ability to participate.

Before long the staff started noticing positive changes in him. He became more appropriate, less repetitive, and more engaged. His family and doctor noticed the difference also and his doctor told him he was not quitting and ordered 30 more sessions for him.

My friend was amazed and excited the difference that the exercise made in regards to his cognitive function.

Personally I try to exercise every day at least 30 minutes and often bring Lily with me on walks around the block. I believe exercise has made a difference in her mood and engagement. The exertion, fresh air, sunshine, and added stimulus all make for a positive experience.

Conan O'Brien

2010-11-22T08:00:00.000-05:00

While dropping Lily off after an evening out at the Dublin Pub, her evening caregiver Rachel said to me that they were watching Conan O'Brien the other evening and Lily asked them, "Who he was?"

So they told her and she said, "I think I knew him when I was young" which they thought was cute and funny.

I said to them, "Well, I know where she got that from. Her sister Peg was married to Con O'Brien!"

So, you see, she was not too far off!

Having fun with Lily

2010-11-21T08:00:00.001-05:00

Missing Emily

2010-11-20T08:00:00.000-05:00

Lily I'm Back!

2010-11-19T09:59:00.000-05:00

I arrived at the Memory Support Center yesterday to find Lily in good spirits and happy to see me.

"Where have you been?"

"Mom, I was in Arizona visiting Emily."

"How long were you gone?"

"One week."

"Is that all. I thought you were gone about 3 weeks."

I assured her I wasn't and I then started to tell her about my trip as I escorted her back to her room to help her shed 4 of the 5 layers of clothing she had on.

As I was taking her picture to show the layers of clothing she let me know what she thought about that!

In her room she showed me a bouquet of flowers and I noticed a tin of bear claws.

"Look what I got."

"Who are they from."

"I don't know. I have been trying to figure that out."

A couple minutes later she again showed me the flowers and we repeated the above exchange because oftentimes Mom may remember a detail later that she couldn't pull up just a minute before. Sure enough she said,

"They told me Traci sent them."

"Who's Traci?" (my sister)

"I don't know who Traci is."

However, later on in the morning she remembered Traci easily.

"Of course, I remember Traci."

So there you go -- the various windows of the Alzheimer's affected mind.

I spoke to the staff who said she did fine while I was away. Rachel, her 2nd shift caregiver said the first couple of days she was a little agitated, but then was her usual self. The activities gal gave me a run through of all they had done, and I could tell how much she enjoys Lily and all that Lily brings to the group.

I was pleased to know that Lily did ok while I was gone.

Back from Tucson

2010-11-18T05:08:00.000-05:00

Arrived home yesterday after a wonderful visit with Emily. I need a vacation now after spending the week shopping, shopping, and more shopping helping her decorate her small apartment. I found with the help of Aunt Mollie and Sue some wonderful deals at local thrift stores. We found a $40 chair, $16 dinette table, $5 coffee table, and a $25 night stand. Found I enjoyed thrift shopping and looking for the treasures.

Plan to see Lily today and will post about that later. My friend and neighbor Anne went to visit her while I was away and found her well, in good spirits, and dressed in multiple layers as usual. I checked on her from Tucson by phone and the staff said she was doing fine with a lingering cough. I missed Mom and am looking forward to seeing her.

RIP Carl Day

2010-11-17T19:11:00.001-05:00

A good friend of Miles that Matter (my running group) and a well known TV personality in Dayton passed away. Carl Day known as the Voice of Dayton was a wonderful man who I felt very honored to have met. My running friend Denise had a very special friendship with him and was a great comfort to him and his family. Below are pictures from the WPAF marathon 2009.


Leigh Ann, myself, and Carl Day

Picture of the big screen as Carl (in center with walker) crosses the finish line with Miles that Matter.

Carl Day and Denise (to his right)

Tucson Pictures

2010-11-17T18:51:00.001-05:00

Catalina mountains ("Emily's Mountain") in Tucson which she can see from her picture window. This picture was actually taken from the top (5th floor) of the downtown Tucson parking garage where her dance company "New Articulations" performed.

The Audience at New Articulations dance show

The backdrop for the dancers


The Dancers	Dinner after the show with Aunt Mollie and Sue. Their last night in Tucson.

Lily and her favorite young man

2010-11-16T08:00:00.001-05:00

Do you see the resemblance?

2010-11-15T08:00:00.001-05:00

Lily's nephew Niall and his girlfriend Jeannie on their visit here from England in September.
(The glasses and teeth aren't his, lol)

How I miss them!

Lily Playing Ball

2010-11-14T08:00:00.001-05:00

Ankle Monitors

2010-11-13T00:23:00.001-05:00

All residents in the Memory Support Center at mom's nursing home must wear ankle monitors which alarm when they leave the unit. This insures that in the event a resident manages to get out of the unit the alarm will go off which will alert the staff. This is a back up system to the locked doors which a code must be punched in to leave the unit. The premise is good but the system is flawed.

The ankle bracelets are quite unattractive, uncomfortable, and annoying, but most importantly they are an affront to the dignity of the person who wears them. They look like a hospital bracelet with a bright blue cube on it only they go around the ankle and are worn at all times-----bathing, sleeping, and out of the unit-----24/7. Anyone observing them would realize the person is a "patient" somewhere and would wonder what was wrong with them.

The Memory Support Center is beautiful and I am sure they were trying to make the environment as home-like as possible when drawing up the plans. The environment does a good job at that. Making the residents wear this ugly anklet takes away from their intentions and is very noticeable when they sit down or when wearing capris in the warmer weather. Putting socks over them is difficult and the use of Ted hose would be near impossible unless you would take it off when changing the Ted hose and the only way to do that is to cut it off. The elderly often have fluctuating swollen ankles which in itself could present a problem with this arrangement.

The other thing is you can't turn them on or off so when you take your loved one out or bring them in, unless an employee is nearby to disarm the alarm with their badge (and usually there is nobody around the doors) the alarm goes off. The alarm is a very high pitched, ear splitting noise which really I think would harm your hearing over time and at the least is highly annoying. Because of so many false alarms nobody comes running to see who is going in or out. The alarm often goes on for a couple of minutes before being turned off.

I do understand the need for monitoring especially those that tend to wander. I do not understand the all inclusive policy. Lily has never tried to leave nor would some of the residents who are wheel chair confined or on walkers and can barely make it down the hall. Why is common sense not allowed to enter the equation?

When Lily had this placed on her on arrival she would get so irritated and ask me for a scissors "to cut the damn thing off". When she would come visit she would find the scissors and cut it off. After losing three of them the nurse manager informed me they cost around $100. I asked if I could sign a waiver so the nursing home would not be liable. However, that was not allowed. Seeing I was not getting anywhere and not wanting to take an antagonistic approach I put my thinking cap on and came up with a workable solution.

I created an attractive bracelet from her identification bracelet she had at home and incorporated the blue cube which is the monitor. The cube was kind of ugly but that couldn't be helped. I told a little white lie and explained to Lily that this bracelet was from Ryan so she gladly agreed to wear it although on occasion has said that the big blue cube was rather ugly. To the nursing home's credit they allowed her to wear the bracelet as opposed to the original ankle band.

The entire staff loved the bracelet and wanted to get the activities department to make them for the rest of the residents. I don't know that the men would like them, but maybe if they incorporated it into a watch that would work.

It would be nice if somehow a system was developed that a code could be punched in by the families to disarm the alarm when taking their loved one out. To allow this though always leaves open the risk that the family might not be careful to be sure another resident does not follow them out.

However, the way I see it with all the false alarms a resident could be long gone before the staff realized it. Pretty unlikely, but yet again I think it unlikely a resident would follow another resident's family out without being noticed. The other option would be to allow some of the residents who do not wonder to be excluded.

I guess with all the lawsuits in this world risks like these are too great to allow, but that is a whole other blog!

Lily Up Yours

2010-11-11T10:00:00.003-05:00

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Dln-C9BkmLAA%26feature%3Dautofb&h=b5f2d

The story behind this video is that while in Cabo last spring Ryan and his buddy Austin decided to get henna tattoos on the beach. (Henna tattoos last a couple of weeks)

Ryan came up with the idea to put the phrase that Lily uses so often on his arm to get her reaction when we got home. You just witnessed her reaction.

Welcome Arizona

2010-11-10T19:28:00.000-05:00

Arrived yesterday to visit with my daughter Emily for a week. Above is a view from the front window of her apartment. Spent first part of day getting new tires on her car (Milton) as she had a flat tire and was unable to pick me up at the airport so I rented a car the first day.

The rest of the day I spent shopping for items to make her apartment more homelike. Emily had to work at both her jobs today - Starbucks and the pet hospital.

In the evening we went to a Mexican restaurant and had a margarita to celebrate my arrival. By the end of the meal I couldn't wait to get to bed as I had been up since 1:30am Arizona time. I was beat!

Lily's LuLu's ~ Ingenuity

2010-11-09T08:00:00.002-05:00

On one of our many trips to Florida I removed all the suitcases to curtail Mom's packing everyday to go home. Did that stop Lily? As you can see by the picture she took her white pants, knotted each leg, and stuffed all her clothes inside. All she needed was a stick to tie to it and throw it over her shoulder! Lily proves a little ingenuity can get you a long way.

Sue's Note

2010-11-08T11:48:00.001-05:00

(a note I received from my cousin-in-law Sue)

Hi, Kerry,

Just wanted to share a few comments that I got from friends who checked out your blog:

"Thanks for sending this, Sue. It's a really wonderful blog, and I'm not a blogger. Glad you married into such a wonderful family. I hope it also helps your healing process. Blessings" (from my friend, Laura)
"I enjoyed reading the blogs and checking out the photos - what a great group!" (from my long-time best friend, Gail)
"This is so fine, Sue!!! I am going to share it with some of our Sisters who are caring for others with dementia... Mary" (Mary is a Franciscan nun, a beautiful warm-hearted person. She lives in a studio apartment in Oakland, and maintains lots of contact with the sisters in her order who live in the motherhouse across the Bay.)

I also wanted to let you know that my sister has been reading your blog for a while now.....she kept reading it periodically in the fall, even when I didn't for a while. She mentioned it again to me last week, asking if I'd read it lately, telling me how much she enjoys it --- how whenever she reads it, she laughs a lot, and she cries. And it's all good.

I think I'm going to copy and send her the entry on "For me, the choice is simple". Even though we'd decided from the start of Mom's sudden decline how we were going to handle it, it still wasn't easy.....

Just wanted to remind you, in case you ever need reminders, that there are more people reading your blog that you'll ever know. Most probably don't "join" -- but are soothed and inspired by your words and your journey.

Love, Sue

Visiting the boys at UC

2010-11-06T08:00:00.001-04:00

Yesterday Mom and I went to Cincinnati to visit Ryan and his roommate Kevin. As usual they were hungry and we asked where they would like to eat--

Montgomery Inn ribs was the resounding choice!

Mom and Ryan were acting silly as usual and Lily was in great form as she usually is when around her grandson.

The restaurant places bibs around the necks of all who order ribs. Lily did not order ribs (too messy) but Ryan thought it would be great fun to put a bib on her anyway.

She didn't seem to mind when the waitress tied her bib on.

About one minute later she looked down and saw it and yanked it off.

"I am not a baby. I don't dribble!"

We all were in stitches!

Lily's LuLu's ~ AARP

2010-11-05T08:00:00.001-04:00

Our AARP magazine came in the mail today. I passed it over to Lily sitting at the counter.

"Mom, here is a new magazine for you to look at."

Out loud Mom began to read the headline to me:


                                   What Women Want

                             Kristen Bell, Jamie Lee Curtis, and Betty White
                                     on sex, love, and ......staying hot!

            "That's ridiculous. Why do you buy crap like this?"

I said, "I didn't. Read the label."

So Mom turns it over and reads the white address label.

"Dan Runyeon! Hell that's even worse and I am going to tell him so!"

Aging Mothers

2010-11-04T08:00:00.003-04:00

I have been dealing with my mother's illness for several years and now have several friends dealing with their mother's health issues. We are all in our 50's and our mothers are in their late 70's or early 80's.

One of the moms has now withdrawn somewhat from her family. She no longer calls her children or wants to venture out much which is most distressing to my friend. This behavior makes my friend and her sister feel as if their mother does not really care about them or her grandchildren. She also makes inappropriate comments at times. This past year they have noticed their mother who used to be meticulous now often wears the same old "comfy clothes" and many times the clothes are stained. Beginnings of something? Probably but nobody really wants to bring up the subject. Their Dad does not seem to notice or if he does has not said anything.

Another friend is going through the end stages with her mom who suffers from Parkinson's, normal pressure hydrocephalus, and now esophageal cancer. Not only is she dealing with all the losses these diagnosis bring, she is traveling back and forth three hours one way and trying to keep up with her own family back home.

Another friend happened to mention in an email that her mother's memory was slipping big time. She said she was in a car accident so they took her keys as her driving is so bad. She commented that the latest thing she was doing was confusing the portable phone for her TV remote. "Isn't memory loss normal as we age?" she said. I told her not this type of memory loss. When you forget how to use something that you have been using for quite awhile that is a problem. I encouraged her to bring all this to the attention of her doctor and get her tested.

My other friend's mom was becoming very forgetful and repetitive. Recently my friend noticed a big improvement in her and came to find out that she was now on thyroid medicine as her level was low. She was shocked at the difference that made. If only all our mothers were fixed so easy!

This is just a sampling of all of us out there dealing with aging parents.

My Hero, Elizabeth Patricia O'Callaghan Gehrke (Lily)

2010-11-03T08:00:00.004-04:00

Field Trip

2010-11-02T08:00:00.001-04:00

Recently the Memory Support Center had their first field trip to a local farm which offers hayrides and seasonal items. This group, however, just came to enjoy the scenery, sip cider, and eat cookies.

The staff had high hopes for the event so that it might be the first of many more. Other than a few minor bumps such as the farm being out of apple cider all went well.

The weather was a bit breezy but nice and sunny. I have observed though that older people in general do not care for the wind. Fortunately one of the activities personnel had the foresight to bring scarfs for the ladies to wear which made them happy.

Lily seemed to enjoy the outing and for some of these residents it was probably the first time they had been out in awhile.

Happy Halloween

2010-11-01T14:00:00.001-04:00

Lily and her great grandchildren Caleb and Hannah 2010

Lily's Halloween nails (half picked off)

Belts, Belts, and Belts

2010-10-31T08:00:00.001-04:00

Something about belts seem to bother Lily.

For a while there when I would ask her to fasten her seat belt she would just grab hold of the belt and hold it across her and not buckle it.

"Mom holding the seat belt won't keep you in the car."

She would then put her hand on the dash and say I will just hold on like this if something happens.

When I would remind her about the time she went through the windshield of a car and received over 100 stitches in her face as a young girls she would reply,

"That only happened to me once in my life."

Against her wishes I would have to insist she fasten her belt.

Other times when I would ask her to put it on she would say, "What if I can't get it off and I was stuck in the car all night by myself. That would be just great."

On our last airplane trip every time I turned around she had her seat belt unbuckled and she was constantly playing with it.

The crazy thing was during Ryan's senior year of high school we had her sitting in one of those portable bleacher seats to watch his basketball games and she would grab the side belts and tie it around her like it was a seat belt. Go figure.

Visiting the Eye Doc

2010-10-30T08:00:00.001-04:00

Yesterday I took Lily to the eye doctor as her present glasses are all scratched up. Prior to going back to see the doctor I requested the receptionist inform the doctor that Mom has Alzheimer's disease. When she was called back I headed back there with her.

I was pleasantly surprised to hear Mom read the numbers and letters she could see correctly on the eye chart. She still is able to read out the headlines of the paper to me but I have noticed lately she is forgetting how to sign her name. I wondered if she would remember the names of letters and numbers she visualized. I was pleased that she could.

Now it did become interesting when the doctor starting flipping between the two lens and asking,

"Do you see better here or here."

and Lily would start reading off the letters as opposed to answering the question.

I have to give it to the doctor she tried various ways to rephrase the question each time hoping to get Lily to make a decision on which provided the clearer image. Eventually I think she got it although it took considerably longer than it normally would. I thanked her for her patience.

The doctor did say mom has the beginnings of cataracts and the right eye is worse than the left which might affect her depth perception. Overall though Lily has pretty good vision for her age and she will have new glasses in about 5 days.

For You Mom!

2010-10-29T09:57:00.000-04:00

Several weeks ago on a partly sunny breezy day Mom and I participated in the local Alzheimer Memory walk. There were lots of people there which was nice to see. Lily and I walked about 1/2 mile of the 1.8mile walk and then headed to the car because she was tired and it was a bit windy which always seems to bother her.

She seemed to enjoy the outing but kept asking me what the crowd was gathered for. My continual reply was

"for you Mom"

which of course made her laugh and happy even though she didn't believe me. But we all were there for Lily and the many others who battle this relentless disease.

A total of $97,000 was raised that day!

Dying Trees

2010-10-28T08:00:00.001-04:00

Over the last summer Lily has really been focused on trees. Whenever we drive in the car or take our neighborhood walks she takes great interest in the trees. Granted our neighborhood is full of large old trees but not until recently has she started to take more of an interest in them. She makes comments regarding their size, shape, and ability to cause great damage if they would fall. Years ago when Lily had her own house she gradually removed all the trees because she was tired of raking all the leaves each fall much to my chagrin.

Lately she has been commenting how all the "trees are dying". I remind her at times that it is fall and normal for the trees to lose their leaves but as most things go that reminder lasts about one minute and then......

"Look all the trees are dying."

Let it Be

2010-10-27T08:00:00.001-04:00

This was written last April prior to Mom moving to Bethany.

Today I was driving Lily to "Leonards" as she calls her adult day care and "Let it Be" came on the radio.

"That's been around since the 60's," said Lily laughing, "and nobody has let it be."

"Same old damn thing every minute." (remarking about the repeating melody)

"I say................and she starts singing the the melody of "Let it Be" to,

"Let it go, Let it go, Let it go, Let it go."

And then the lyrics go on to say,

                                 "And when the brokenhearted people living in the world agree,
                                               there will be an answer, let it be"

   Mom says,

   "And they have never found the answer and never will."

Mom's comments got me thinking about how true her words really were for me taking care of her. Sometimes there is no good answer in the Alzheimer world and the only thing to do is let it go.

Do any of you out there ever feel like I do when someone who is around your loved one tells you how lucky you are that he/she is so pleasant and so easy.........a little resentful. Like if you really only knew. Sure Lily is pleasant much of the time which does make it easier and I am so thankful for this, but part of me feels they really don't understand. A lot of me feels guilty for even voicing this.

For example how often are you asked, "How is your Mom (fill in the blank for your situation) doing?"
I never know quite know how to answer that and usually say something like, "Oh she is doing fine, pretty good." How many details do people really want? Probably not much. Most people (me included) want to hear good news.

They don't want to hear details like:

“Well, this morning Lilybird beat me downstairs again which means the cats could be outside, the dogs out of their pen, and the dishes washed with no soap. Fortunately that was not the case So after fixing her hair, applying her make up, feeding her, and giving her meds, I decided to get myself ready. Before leaving the room I told mom for the 18th time that we have no soap so she can't do the 3 dishes that won't fit in the full dishwasher and to stay out of the kitchen and hoping that if she stays out she will not try to do the dishes again. As I was going upstairs the phone rang so I grabbed it and headed on up and found "poop" on the floor and walked into my carpet. My immediate thought was-- the dogs? But then again it was right outside Lily's bathroom? So there I was scrambling to be ready to go out, knowing Alice, mom's aide was coming at 8:30am, cleaning up poop while talking on the phone, worried about Lily trying to do dishes downstairs, when my daughter Emily beeps in and is stuck in traffic on 675 wanting to know if there was a way to check traffic on the internet! And then when I walked downstairs…
                        Lily was just putting the damn dishes away.”

“Now what were you asking me????”

You get the idea. As pleasant as she is, she requires constant attention which is really similar to my world when my kids were toddlers just with a whole different dynamic. I don't know how many people truly understand the world of a caregiver.

Answering the repetitive questions or remarks which reminds me of Lily's comment to the song above...........
"Same old damn thing every minute." Ironic huh?

Always trying to maintain Lily's dignity as an adult and her sense of belonging. Not wanting her to feel she is a bother or trouble because if she begins in the slightest to feel me becoming impatient, the agitation and wanting to go home sets in.

Trying to do my best by her yet not forget the rest of my family needs me also.

                                "So how is your mother?"

There really is no good answer to that question for most. We as caregivers just keep plodding along with some good days and some not so good ones.

Lily changed

                  "Let it be"
                             with "be" meaning that exists.

                                                                    to "Let it go"

Perhaps Lily is right. It is best to let what exists go. Otherwise the unsaid response to, "How is your Mom," might drive all my friends away.

Oprah

2010-10-26T08:00:00.001-04:00

(This actually happened a few months ago. Since I have not received a call from Oprah (Whew!!) I feel safe to post it.)

Today my son Ryan informed me, after the fact, that he submitted information about Lily, myself, and my blog to Opra. I was shocked but touched that he did this. Below is a snippet of our conversation.

"You did not!"

"Yes, I did, just now."

"You did not."

"I did."

"I am going to kill you."

"I know. That is why I didn't tell you till after I did it."

"What made you think to do that."

"I don't know. I thought of it before but just never did it till now."

"What did you say."

"I just told them about you and Lily and how you take care of her and how you write a blog and try to keep a positive spin on it."

"Well thank you. That was very sweet. I would kill you if I actually thought they would call."

Poor Fish

2010-10-25T11:16:00.001-04:00

"That fish has got to be cold in there because it has been in there for days."

The New Rake

2010-10-24T08:00:00.001-04:00

Mom was over yesterday for a few hours and almost immediately headed out back to sweep the leaves off the patio. A short time later I looked out my living room window and there she was in the yard "sweeping the leaves".

RIP Callie

2010-10-23T08:00:00.002-04:00

Mom's cat Callie died a while back. The day Dan was flying down to Florida (we were already there) he went upstairs to check on Callie and found her under Emily's bed dead. I had just seen her the day before and she was fine.

We don't know exactly how old she was but I would say she was over the age of ten.

Do you think she died of a broken heart with Lily no longer in the house? She seemed to be doing ok going in to visit Emily in her room or sitting at the top of the stairs.

We tried to give her extra attention with Lily away. I wish she could have went to stay with Lily but at least she was here with her the 3 years she was with us. I have to say as Lily progressed in the disease the less attention she gave to her cat often forgetting she was here. And, of course, Callie being such a timid cat rarely ventured out of Lily's bedroom.

Lily has only asked about Callie one time since she has died and that was in her room at the nursing home when she asked me if I was remembering to feed her. I assured her I was.

No point in bringing up Callie's death. Why upset her needlessly. I suppose this presents a positive side of memory loss sparing Lily the heartache of her pet's death.

Dancing in the Rain

2010-10-22T08:00:00.002-04:00

My friend Sande and I bought this picture for Lily with her colorful personality in mind.
After hanging it up in her room I asked her if she liked it.

"No"

And her opinion of it has never changed. Even when I try to get her laughing by saying the tall girl dancing in the red dress is Emily (her granddaughter who dances) and the tall boy is Ryan and she is the little old woman holding the umbrella.

With that she proceeds to strut around the room bent over like she is "old and feeble" holding her arm up pretending to hold the umbrella laughing and proclaiming what a dumb picture that is.

So if for nothing else the picture is good for a good laugh which is always a good thing!

Resident of the Month

2010-10-21T15:16:00.000-04:00

Lily was honored last week as Resident of the Month. She received a nice certificate and a beautiful corsage. I am sure there was probably some type of activity centered around that which she was not able to relay to me. I know they interviewed her while I was there asking her questions about her life to which I helped her respond. I do know for the next several days she was asking me over and over who gave her that lovely corsage.

To Blog or Not?

2010-10-20T21:43:00.000-04:00

Over the weekend Bob DeMarco forwarded me a post from his personal email regarding Pamela Kelley's article titled Reflections on the Alzheimer's Disease Caregivers Survey. Normally Alzheimer Reading Room posts come daily to me directly from the site. I don't know if he intentionally did that or not. Nonetheless it spurred me to address those uneasy feelings which have been brewing in me lately related to my blog or more specifically my lack of blogging.

The lines below resonated with me:

"I feel guilty about not making the time. I feel angry at feeling guilty. Yep. That's a stressor."

"Sometimes too, while giving care everything seems like work."

"At times, the path of benign neglect is chosen only because I've heard that I can't do everything, and have to choose. Often, the path of least resistance is the one that requires less time and less effort."

Prior to Mom's moving to a nursing home I loved to blog. What an outlet for me that was. Why not now? I do know I felt very challenged for the last 6 months with 2 kids graduating, one from college and one from high school, a vacation out west which provided much needed closure (yet to be written about), preparing for one child's move off to college and one child's move to Tucson, overseas visitors for two weeks, 2 other trips, and of course moving Lily to a nursing home. Looking back I realize I actually did have a lot going on.

The last couple of weeks I have also had to address another area of my life that has kept me going the last few years as I fought through the battles associated with taking care of Mom. More specifically running.

Recently I hit a crossroads when it came to my running. For those of you who don't know me I had never run a day in my life before the age of 50. Always hated running and certainly never thought I would do it. As happens sometimes in life with the right set of circumstances and people you do what you thought you never could. (kind of like caregiving, huh?)

I met my running mate who was looking for someone to WALK a Team and Training marathon in San Francisco and I who liked to walk was open to that. Before you knew it we were running and we haven't stopped with a couple of marathons and several halves now under our belts.

However last winter with my son entering his senior year's basketball season and not wanting to miss anything I missed a marathon and we have not got back in sync. We are now all on different schedules and I was at the point a couple of weeks ago of saying well that is it. Maybe I should just quit and move onto something else. I think I actually made that decision but within hours was questioning myself. Was I really ready to let that part of my life go just because the last few months have been so full. Life is now just getting back to my new normal. Family of five down to a family of two with much more free time. So I made the decision I am going to train and keep on keeping on, even if my running mates aren't there with me. Perhaps new ones are on the horizon.

Along with running was blogging which has slipped from my priority list. Both huge areas of my life which have given me motivation, purpose, and an outlet providing me sanity during the most stressful of times. Did I stop blogging because mom is now in a nursing home? Does this lack of enthusiasm relate to my lingering guilt for placing her there and somehow I am no longer qualified to write. Or is it simply falling off the horse and one day turns into the next without getting back to it which leads to further neglect.

So while all this is going through my mind I receive the post from Bob. Time to act. Time to decide. To blog or not. To give up what I have so enjoyed or to commit to getting back on task. So, as of yesterday, I have committed 3 mornings a week to blogging. Away from my home so I will not be disturbed. Just there to write and, of course, drink my coffee. Will I always just blog on Lily and Alzheimers? I don't know. I think not as I do have other ideas and would like to expand on that. For now though, I must say, this morning as I write this......

It feels good. Damn good!

Interesting article on preventing Alzheimers

2010-10-19T16:15:00.001-04:00

http://www.aolhealth.com/condition-center/alzheimers/prevent-alzheimers?icid=main%7Cmain%7Cdl3%7Csec1_lnk1%7C178379&a_dgi=aolshare_email

Loving Feelings

2010-10-18T18:26:00.000-04:00

Last night I asked my son Ryan who was home from college for the weekend to drop Lily back home to which he readily agreed.

About an hour later I received a call from Holly the nurse there saying,

"Kerry just thought I would let you know your mom came out of her room showing us pictures of her grandson and going on and on about him. I have not seen her that happy in a long time. I just wanted you to know that."

Of course I thanked her and I told her how much I appreciated the call. A short while later Ryan called and I told him what Holly said. He replied,

"Well while driving her back I tried to tell her how much I loved her and how much she means to me. I think she knew what I was trying to say because she told me she loved me and hugged me so hard and was asking me over and over how soon I would be back."

Through tears I said, "Why now? What made you think to say that."

"Because she is getting old and I am entering a new phase of life and not around as much. You just never know."

This morning I went to visit Lily after exercise class dropping in to straighten her room and do her hair and make up for the day. While applying her blush she said,

"That Ryan is such a good kid."

So at this point I realized not only did that loving feeling carry over last night when Ryan dropped her off but all the way to this morning.

Then beaming she turns to me and says, "Maybe I will marry him!"

Why Did It Take 5 Weeks for the New York Times to Correct Its Alzheimer's Test Assertion

2010-09-24T15:48:00.000-04:00

http://www.medpagetoday.com/Blogs/22347?utm_content=GroupCL&utm_medium=email&impressionId=1285219700939&utm_campaign=DailyHeadlines&utm_source=mSpoke&userid=62037

Lily in her Hillary Clinton outfit

2010-09-03T23:24:00.000-04:00

My Irish cousin Niall and his girlfriend Jeannie arrived today from England for a two week visit. Ryan, Lily, and I drove to the Cincinnati airport to pick them up. On the way we stopped at an outdoor mall in Cincinnati and had a late lunch at Max and Erma's. After lunch we had about 45 minutes to kill so we decided to window shop.

While walking I noticed that Lily had wet her pants and the stain was down to her knees. Without thinking I blurted, "Mom you wet your pants." Fortunately she immediately came back with, "Someone must have spilled water on me." for which I was thankful and quickly agreed with her.

Looking around, the only department store was Dillards. We quickly walked over and after about 20 minutes of browsing we purchased an outfit for mom for about $29 from the 70 percent off rack. After making our purchase I took Mom into a fitting room and quickly helped her change and out we went.

Unfortunately her eighteen year old grandson was there to immediately make fun of her new "Hillary Clinton" outfit which got us all laughing so hard that I was worried Mom would pee her pants again!

The Alzheimer's Association Brain Tour

2010-08-22T21:55:00.000-04:00

Very interesting if you would like to know more about the anatomy of your brain and how it works.

The Alzheimer's Association Brain Tour