Fun in the Sun

One of our cruise stops was on Royal Caribbean's private island in the Bahamas.  The day was sunny and nice although the water was quite cool.  We walked around a little bit before finding the perfect spot with shade for Lily and sun for us and settled into our lounge chairs.   

Soon all my companions were dozing enjoying the warmth of the sunshine.

Noticing Lily sleeping I suggested to Emily and Jenny that we take a short walk down the beach.  The island appeared quite small and I thought if (which I doubted) Lily woke up we would find her easily plus we would only be gone a brief time.  The girls thought that was a great idea and off we went down the beach. 

We kept walking exploring what this little island had to offer.  Soon we were on the other side talking nonstop as we were walking.  Looking up it became apparent to me that this island was much bigger than we had anticipated.  We had been walking about 20 minutes or so and suddenly I started worrying about the possibility of Lily waking and realizing that this island was not so little.  I also knew she had started giving her maiden name recently and she had taken off her identifying bracelet before leaving home unbeknownst to me.  Needless to say I was beginning to really worry.

Not wanting to take the time to walk all the way back around the island the same way we had come and seeing how the way ahead seemed even longer, we saw a nature path and decided to cut through the middle.  After walking on the path about 10 minutes curving this way and that we ended up about 50 yards down the beach where we had started.  And I am thinking "Oh my gosh." 

We then found a road to the right of the path and headed along soon discovering all the wonderful sights of the island that most tourists don't get to see like the workers housing, the sanitation area (dump), a construction zone, etc.  Several workers in golf carts passed us and we stuck our thumbs out and all we received in return were huge grins and fingers pointing straight ahead. 

By now the sun was beating down on us and we were beginning to grow weary of our fast pace.  Finally we recognized the general area of our chairs and I especially hurried forward hoping for a glimpse of Lily.  And there she was cool as a cucumber under her hat, wide awake, and saying,

"Oh there you are.  Where have you been?"

With red faces, panting breath, and relief we said,  

                                          "Oh, just out for a quick stroll on the beach."

Prayers in the Airport

During our layover in Atlanta......

 Emily, Lily, and I were walking through the airport to get a little exercise 

                                 

          when Lily suddenly pointed to the chairs and said,

                                 "Look at them over there saying their prayers".

Emily and I looked over at the gate and several of the men were bent forward 

 

                               over their ipods, phones, or laptops.

                                          

                         

                    We looked at each other, rolled our eyes, and laughed.

We are Back

Monarch of the Seas  
             Jenny, Emily, Lily

We arrived back from our Caribbean cruise very late Friday night.  The weekend went by fast just catching up.  Blogging has been weighing on my mind so much so that I awoke at 5am thinking about it and couldn't go back to sleep.  One of my blogger friends Judy even sent me an email last evening just to make sure we were ok.  Maybe that is what caused the early awakening as her email response was the last thing I did before going to sleep.


 I had great intentions of blogging as we cruised even bringing my netbook, but unfortunately things didn't turn out as expected.  For starters the first couple of days were spent traveling back and forth from Daytona to Orlando getting Emily to her auditions.  Then to my surprise I came down with the stomach flu before ever getting on the ship!  I had actually been worried about getting seasick as that happened to me on my last cruise which was not typical for me. 

I also forgot my camera cord to download images to my computer and did not want to post without some pictures attached.  

Once on the ship the days seemed to just fly by......with little time for anything else.  I find it difficult to write while around other people and I was almost always with either Lily, Emily, or Jenny. I need quiet and time to think to formulate my thoughts.  And the only quiet time was in my cabin at night where there was no internet and I was tired after a full day.

So as a result my longest dry stretch of blogging occurred.  But I am back and looking forward to recording some of our adventures and catching up on all the blogs I follow.

Exelon Patch Study

This post was published last week on the Alzheimer Reading Room blog.  Please go to the below link if interested in reading the comments or to visit the site.


Alzheimer Reading Room

Original post from 1/11/10


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


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

About 2 days after this post I found out Lily's thyroid level was mildly out of range (TSH-6) so she did not qualify for the study.  Her mini mental status exam was 10 which had dropped from 12 done sometime last year.  I had decided to put her in this study as I had noticed a recent deterioration in her mental facilities verified by her MMSE score.  Because of this I felt taking her off her razidine which  has to be discontinued for 2 weeks before starting the exelon was not such a big risk since she was no longer doing as well.

Lily's thyroid level is now in normal range and if all other results meet the study's requirements I expect her to have an exelon patch on next week. This will be our second attempt to get her enrolled in this study.

The interesting thing is that after her doctor increased her thyroid medication I started to notice Lily improving--not as confused, remembering more details, just generally more with it.  So after several weeks her thyroid level was rechecked and the TSH is now around 2 (normal range).  So we went back in to redo all the paperwork.  They also checked her MMSE (mental status) and she scored 12----up 2 points.  Fortunately the study includes those with a MMSE score less or equal to 12.  What I want to stress here is that 2 points doesn't seem like much but is really a big deal in the little things of everyday life with Lily.  And that is definitely attributable to her thyroid level.

So for any of you caregivers out there make sure your loved ones have their thyroid checked once per year.  Ideally the TSH should be less than 3.  Even if it is in the high normal range (4-5) I would venture to encourage your doctor to try thyroid replacement medication to see if a difference can be seen.

I have to say I had second thoughts about enrolling her in this study because the only reason I decided to take the risk was because she was deteriorating on the razadine/namenda combination.  However, at the time I made this decision I did not realize her thyroid level was out of range which is what was causing the deterioration. I actually almost backed out.  I talked to her Doctor who said they had  been seeing some good results with the exelon and she thought it was worth the risk so I agreed. However the same day we went back in to redo all the paperwork I came home and had a post from someone who said that her mother did terrible on the exelon which made me again question my decision.  However, I know not every individual reacts the same so I am hoping Lily has better results with it.

I will keep you posted.

Prayers in the Airport

As I blog this entry we are on our flight to Jacksonville.  So far it has been a typical travel day with Lily who has repeatedly asked the following questions or made the following statements.

"Where are we going?"

"Oh no I just thought of something.  Who is going to watch my cat?"

"Guess what I forgot my pajamas."

"Can you believe it I forgot to bring another pair of pants.  This is all I got."

In Atlanta while waiting for our flight to Jacksonville, we walked the terminal and mom looking over to the seating area said,

"Look at them over their praying." 

Emily and I looked over and saw several men with their heads down over their blackberries or laptops and we had a good laugh.

Happy St. Paddy's Day!

Paula (Dan's sister) and Lily

Happy Birthday Lily!

Elizabeth Patricia O'Callaghan born in Dublin Ireland celebrates her birthday this day March 16, 2010 with friends and family in Dayton, Ohio.

Driving into St. Leonards this morning Lily said, 

"Oh I am going here again?  They are going to think I am a nut.  Here she comes again.  She must be hard up.  I am not coming back here for at least 2 weeks."

"But Mom," I said. "Today they are going to love to see you because we are bringing chocolate chip cookie cake for everyone for your birthday."   She thought that was a great idea!

A beautiful purse from the good folks at St. Leonards.  Perfect for our upcoming cruise!

 Early this evening my friend and running partner Leigh Ann showed up at the door with a darling birthday present for Lily.  Surprise!

Can't have a birthday dinner for an Irish lass the night before St. Paddy's Day without corn beef and cabbage followed by mint chocolate cake!

Our wonderful neighbor Anne helped us top off the celebration with a little Bailey's Irish Cream.
Yum!  She also brought Lily a beautiful jewelry box to put in her room.

Everybody had a great time especially Lily!

P. S.  Judy what a coincidence?? our mom's birthdays are so close.  Happy St. Paddy's Day!

Packing

On Thursday Lily, my daughter Emily, and myself  are hopping on a plane and heading south.  We will  be in Florida for about 3 days where Emily will  be auditioning for Disney and Holland America.  In our down time we will eat, shop, and hopefully relax (weather permitting) on the beach.  Sunday evening we will pick up my daughter-in-law Jenny at the Daytona Beach airport as she will be joining us for the rest of our trip.

On Monday we will be boarding a Royal  Carribean ship for a four night cruise to the Bahamas.  Two years ago the entire family took a fabulous cruise through the eastern carribean. Lily was with us and had a wonderful time although initially fought the idea. That was back when she was constantly asking to go home so we had to tell her we were taking her back  via Florida.  By the time
she got off the plane she had totally forgotten going home and enjoyed herself for most of the trip.

Each evening she would say to one of us,  "So are you going home now?" and we would  be in the middle of the ocean.  Unless she was looking at the sea she had no idea where she was.   Being with us and enjoying all the ship had to offer was all she really cared about.

For this trip I have been telling her we are flying to Florida to go on a cruise and she just asks me questions.  Of course 30 seconds later she has already forgotten that she is even going.  But at least this time she is more open to the idea.

I  can't wait!

1964 Seattle

Traci, Grandpa Gehrke, Grandma Gehrke, Lily, Norbert, and me (Kerry) in the front.
 This was the last picture taken of my father prior to his death.

Haunted

The below post written by me was published on the Alzheimer Reading Room blog today. 


In the midst of a conversation regarding a netbook with a salesman at Radio Shack I overheard a man raising his voice to another salesman at the register.  "This is ridiculous.  I have never had this happen before."  The salesman was telling him he was trying to use a debit card as opposed to credit.  Glancing over I could see an elderly gentleman with his nicely dressed wife standing right next to him holding on to his arm.  As he pulled out another card he must have flipped it at the salesman because I then heard him say, "Oh I am sorry.  I didn't mean to do that.  I am just really frustrated.  I had my wife at the doctors today.  She has Alzheimers."

In the meantime my salesman is explaining details to me about the netbook, but I can hardly listen as my heart immediately starts to ache for this man.  Sensing his frustration, I felt a need to go over to him and say, "I understand.  I know what you are going through."  I wanted to look into his eyes so he could see into mine and share a mutual understanding.  I came so close to doing so but the timing just was off and I wasn't sure my actions would be appreciated although I was willing to chance it.  By the time my salesman finished talking the couple was already heading out the door.  I remember feeling tempted to run after them.  Haunted was how I felt watching the husband leave with his wife shuffling along  by his side. 

All day I kept thinking about this man.....  lost dreams, lost companionship, lost conversation.   How lonely and isolating it must be to be the only one to shoulder the burden of dealing with this disease.  And yet I would venture to guess most caregivers are in this situation being the ONE (as Bob DeMarco says) and the only ONE.  Me.... even though I am the primary ONE.....there are 3 other family members helping each in their own way with Lily.  How blessed I really am.

Elizabeth Patricia O'Callaghan

This picture was taken in Dublin Ireland and the youngest picture we have of her.   I don't know the exact date but she came to America at age 23 so had to be before that.

John & Mary O'Callaghan (Lily's paternal grandparents)

County Kerry Ireland

Happy First Birthday Ryan 1993

Oh how Lily loved babies!

My Keys

 Driving home from Ryan's final basketball game, I heard Lily rummaging through her person.

"Mom, what are you looking for?"


"I can't find my keys."

To which Dan said, "That's ok we will just break a window."

Lily quickly said, "You're kidding right."

Bypassing the issue that she has lived with us for 3 years, I said,  "Mom, don't worry we left the doors unlocked." 


"Oh good." as she zipped up her purse.  "I guess nobody would try to get in."

and my dear husband said, "Nobody would think you were dumb enough to leave the door unlocked."

which made Lilybird laugh.  And when we arrived home we all went inside without a word

Response to the reader Deborah

The below post written by me was published on the Alzheimer Reading Room blog a couple of days ago. 

In response to the reader Deborah who wrote:

I am caring for my Mother-in-law she has advanced Alzheimer and a serious heart condition. I have felt all on the emotions that you shared. The loneliness is amazing.

We recently acquired the help of Hospice. I now have an aide 4 hours a day, 5 days a week. I have been able to finally sleep. My out look has improved. We are often in crisis and it wears all of us out.

I feel bad for asking god to just let her die in peace. Does anyone else feel that way?

 

Reading your question I feel the guilt you are feeling for having these thoughts.  Yes, I am sure many caregivers feel the same way as you.  Being a nurse and having seen the realities of end-stage disease many times death is not always the worst option.   I ask God frequently to spare Lily and take her before she gets further along in her disease process.

Why you might ask?..... Lily has a reasonably good life at this point. True, from the neck down her health is great, but I see my mother slowly withdrawing from the things in life that have always made her life enjoyable. Looking down the Alzheimer road I see what we have in our future....eventual loss of all her abilities to take care of herself and participate in a quality life.

Lily will no longer be able to articulate her feelings or have the ability or desire to nourish herself becoming so weak that sitting up will not be possible. Withdrawing from life,  Lily will sleep her days away and slowly starve till her body begins to shut down. I will never consent to a feeding tube to extend Lily’s life as dying of starvation would be easier than lingering in a state of despair for her and her family.  You see Alzheimer's disease is always 100 percent fatal.

If her heart were to give out before developing the symptoms of end stage Alzheimer's that would be a blessing and a much easier death.  I have no guilt saying this as I know my Mother and we have discussed this topic prior to her diagnosis and if she were in her rational mind she would tell me not to do anything to prolong her life. She would hope to go quickly and be kept as comfortable as possible. Even now from her Alzheimer point of view the other day she said put me in the grave when I go kaput.  What she doesn't understand is that is indeed what is happening to her each day bit by bit.  She would be mortified if she knew she was spending time coloring as a child would (in adult day care), repeating herself over and over, or the fact that she needs constant supervision.

So for me the choice is simple. I will continue to make what time she has left as comfortable and enjoyable as I can but when the time comes that her body begins to fail I will let nature take its course holding her hand, loving her, and letting go.

Laugh out Loud (I couldn't resist)

Three mischievous old Grannies were sitting on a bench outside a nursing homeWhen an old Grandpa walked by.

And one of the old Grandmas yelled out saying,
"We bet we can tell exactly how old you  are."  
The  old man said,
"There is no way you can guess it, you old fools."
One of the old Grandmas said,
"Sure we can!  Just  drop your pants and under shorts and we can tell your exact age.."
Embarrassed just a little, but anxious to prove they couldn't do it, he dropped his drawers.
The Grandmas asked him to first turn around a couple of times and to jump up and down several times.. Then they all piped up and said,  
"You're 87 years old!"  
Standing with his pants down around his ankles, the old gent asked,
"How in the world did you guess?"  
Slapping their knees and grinning from ear to ear, the three old ladies happily yelled in unison...
"We were at your birthday party yesterday!"

 

Funny Faces

Nana remarked to Emily that she liked her hat, so Ryan being the pest he can be ran and found her one of her own and a not very attractive one at that.  He then spent several minutes trying to get it over her head.  Once in place, of course, the funny faces began!

1963 Milwaukee Wisconsin

Dad, Grandma Gehrke, Lily, Aunt Tillie, Grandpa,
Kerry & Tim up front

Visiting the Folks!

Dancing with Ryan August 09

Morning Conversation

Here is a snippet of our conversation while on the 5 minute drive to St. Leonards where Mom participates in adult day care.

Lily:  "Oh am I going to that place where they all are half asleep and then there is me just sitting there."

Kerry:  "Yes, Mom.  They are not all sleeping.  You enjoy your visits there."

Lily:   "Yes they are.  They are all old in their 70's."

Kerry:  "Mom are you old?"

Lily:  "Yes, I am old but I can still do everything I used to do.  One day though it will all go kaput and be all gone."

Kerry:  "Well Mom,  what am I going to do with you then?"

Lily:  "Just put me in the grave.  I hope you have the money or else they will just leave me in the snow. "

By the way I left Lily drinking coffee sitting next to another lady and they seemed to be enjoying each others company.