Chris

Mom's next door neighbor in South Carolina was Chris and she always helped Mom whenever she needed something. She would do anything for anybody.  Chris was Mom's closest friend in SC and they did many things together through the years. Especially towards the end of her stay there she really helped me by watching out for Mom and letting me know when something was amiss.
On our summer trip down to Florida we stopped in SC to work on Mom's condo.  Mom and the kids stayed at a nearby hotel because I was afraid what Mom would say if she saw her condo empty.  I made arrangements for Chris to meet us for breakfast at Denny's the morning we were leaving for Florida. Mom had not seen Chris for 2 1/2 years and when she walked up to her at Denny's Mom smiled and had this puzzled look on her face.  She said,  "Do I know you?"  Chris replied,  "Yes you do. Remember we lived next to each other." 
I could tell her face was familiar to Mom but she really did not remember many details.  However they had a nice visit with Chris relaying her information regarding old neighbors some whom mom remembered and some not.

When we were leaving Chris gave mom a beautiful white throw which she had crocheted.  The throw is kept on a chair in mom's room where she can enjoy it everyday.  I remind her often of the special person who made it for her.

Lilybird and Bird

            

I have an old  friend named Robin who has the nickname of "Bird" given by another old friend named Penny.  We have all known each other since third grade.  Last June I needed to go to Florida to do some work at our home in Ponce Inlet and I planned to take Mom with me.  I mentioned the trip to Robin who volunteered to accompany me and help me with the work I had to do.  Knowing Robin I knew she would be fabulous helping me clean and decorate the house but I have to admit I was a little worried about how she would react with Mom 24-7.  The reason I worried was once when she was over and Mom was very repetitive that day she commented how she didn't know how I did  it as she would not have the patience to deal with that.  However she did not mention any concerns she might have been feeling being with an Alzheimer patient for so long and even had to miss her 10 year old son's Eric's soccer tryouts.  I was so happy Robin agreed to go because truthfully I did not know if I could deal with Mom 24-7 for a week without anyone else around to lighten it up.
Well let me tell you Robin did fabulous!  She was SO GOOD with mom and we all had the best of times.  Robin joked with mom and we shared so much fun and laughter.  I will never forget that trip and how fabulous Bird treated Lilybird patiently answering her questions over and over and helping her whenever she was needed.   While there Robin  kept telling me  that I needed to record Mom or write this stuff down because she was so funny.  Little did I know at that time that before too long I would be doing just that!

Lily, Penny, Robin, Allison, Kerry (Me)

God has put some wonderful friends in my life who have been there for me during this time.  To put into words the emotion I feel in my heart observing my friends interacting with my mother in such a kind caring manner is not possible but is something I will never forget.

Bad News

Following our recent trip to Florida Mom was a little more confused than normal upon our return which is not unusual for an Alzheimer patient.

Looking concerned she said to me, "You know I just thought of something.  I don't know if my mother will be there when you drop me off at home."  

I was so surprised by this statement I said, "But Mom your Mother died over 50 years ago."

"She did?  Nobody from Ireland even told me that.  What about Sean?" (her brother)

"I said Mom he also is dead."

"I just can't believe nobody let me know."

Of course I reassured her she was told and has known for some time but had forgotten this information.

Later in the afternoon,  she was sitting at the counter looking a little down so I said,  "Come on Mom let's take the dogs for a walk around the block."

"I'm not really in the mood for that."

I said,  "Why is something wrong?"

"Well if you heard the news I heard today you wouldn't be feeling very good either."

Forgetting our earlier conversation,  I said,  "What news."

"My Mom is dead."

                                                  Margaret O'Callaghan    1920        

I felt so bad for her and at the same time it was unsettling to think of her mourning her mother's death which had occurred so long ago.  If I could take back my words I would have simply have said with the first question, "Oh I am sure someone will be home" and left it at that.  I guess I was just so caught off guard and answered in the worst  way possible.  I should have know better.
         
Odd how most events she forgets 30 seconds later but that                             
conversation stuck with her the whole day.

Forgotten

This is a Lily story which my daughter Emily reminded me of tonight.  Last spring our family arrived home in our car and we all piled out  into the house.  Shortly afterwards  Emily said,  "Where's Nana?"  We looked around and she was nowhere to be found.  Emily went outside to look and found Nana Lily still sitting in the car.  Apparently when we all jumped out her door somehow was locked and she  couldn't figure out how to get out so there she sat.  "I was wondering when you were going to come out and find me.  Dumb ass locking me in the car!"

Just Greaaaaaaat!

September 15, 2009

A note from Ronald A. Gehrke

Greetings from California


Mary & I just got back from beautiful Canada.  Here is a photo of us at the Post Hotel.

Earlier this year we volunteered at a Giants BBQ Fundraiser and I got this G.R.E.A.T. t-shirt.  Of course I thought of the GREAT time we had in OHIO with you.

Love,

Ron & Mary

P.S. Sorry about the size.

The story behind this is that my father's side of the family came out from California to visit us last summer. That side of the family calls my mother Pat because my father did not care for the name Lily and he called her by her middle name Patricia which he shortened to Pat.

While our west coast family was here my mother repeated that's just great over and over again.   

Gang Resistance Education and Training is what the initials G.R.E.A.T. on the t-shirt stand for via the San Francisco Police Department where my cousin Ron works as a police officer. As my mother would say, "That's just GREAT!"

Ryan & Nana Lily

Acting silly at Carrabas!

Miles that Matter Rummage Sale

Recently I took Lilybird with me to work at a rummage sale to benefit the Special Wish Foundation.  This is the second year that Miles that Matter (my running group) coached by Karen Cosgrove has organized a sale to benefit a charity.  This year our group raised close to $2000 for the Special Wish Foundation. 

While there Karen brought up the idea of getting a team together called "Lily's Team" to benefit Alzheimer's to run at the Princess Marathon next March at Disney in Orlando.  We discussed  bringing Mom down with us to cheer us on at the start and perhaps meet us at the end and walk us over the finish line.  How fabulous this would be if we could make it happen.

As we were working mom browsed through the jewelry for at least two hours eventually coming up with a gold chain she wished to purchase.  The following pictures were taken by Diana a member of our group.

What do you think of this one?

Yes I think it will work.

Coach Karen & Lily    

Interaction with Medication has Worked for Us

 Recently I saw an article on the internet which basically put down the use of medications for Alzheimer's in nursing homes.  The author felt that all the money spent on these medications which he felt did little good should be put to better use in training the staff to interact more with the patient.  Below is my response to that article.

I can only speak to my personal experience with my mother, but in our case I have to disagree with the author.   My mother lives with us and we interact with her all the time, but still we have had episodes of extreme agitation which no amount of talking would have abated.  Putting my mother on Namenda (she was already on Galantamine) put an almost immediate end to her agitated behavior and the quiet lasted for over a year.  Last spring we again went through an episode of uncontrollable agitation and her doctor suggested Rispirdol which again worked beautifully without putting her in a "drugged out" state which I feared. Soon we are going to attempt to wean her off the Rispirdol since her behavior is stable.
Although his premise is good as I would never discourage personal interaction over the use of drugs I would have to say from my personal experience I would not have been able to keep my mother at home without the use of these medications.

Alice

Mom has a caregiver named Alice who comes in twice per week for about 5-6 hours at a time to take care of her which relieves me of my responsibility for awhile.   Before Lily became more advanced in her Alzheimers she was  a big and I mean BIG Talker.  Being from Ireland she must have kissed the Blarney Stone many times for she definitely had the gift of gab.  Mom is not as talkative now but still enjoys conversation and Alice likes to yak which is so good for mom.  Alice brings mom breakfast and they sit at the counter talking and reading the newspaper together.  Alice also helps mom with her shower and hygiene.  Usually they watch The View and often take walks over to the park.  After Alice leaves I will ask mom if she had a nice visit with Alice and she says, "Oh yes very much,  She is very nice."  Oftentimes she says,  "I don't know why she comes over so much she must be lonely and need the company which is fine."

Today Alice told me a story about her last visit with mom which she said cracked her up.  While at the park sitting on the bench,  Mom suddenly looked at her and said,


"You live with your sisters too, don't you?"


Alice replied, "No, I live with my husband."


"But he does have a wife doesn't he?"


Laughing Alice said,  "Yes, it is me!"

She said she chuckled over that all day telling her husband when she got home.

Eating Watermelon

"What are these 2 black things in it?  You think they would have taken those black things out.  Oh the other side looks good."

WPAFB Marathon

Yesterday I ran my 4th half marathon (13.1 miles) with my running buddy Leigh Ann and our running group Miles That Matter at WPAFB.  The weather was almost perfect although I was wishing for a little less sun or perhaps a little more shade by the end of the race.  We finished in 2:44 which is my best time although Leigh Ann finished 2:30 in a prior race at WPAFB. 
 

I have to say of the few marathon events we have participated in Wright Patterson definitely has an awesome opening ceremony with paratroopers and flyovers and a moving finish with an Air Force Officer waiting to place a medal around your neck.    

Overall they do a remarkable job!

Without my family I would never be able to participate in something like this.  Their willingness to watch out for Lily and take care of her while I am away enables me to train and participate for these events.  Exercise is a great stress reducer and I believe that is what helps me maintain  balance in my life.

My husband Dan usually comes to all my events to cheer me on or to help the team in so many ways, but this year my son Ryan informed me he was coming as well.  Of course Lily was included as you can see by my pictures and I must say she was a trooper as it turned into quite a long day for them standing at the sidelines waiting for me to pass.  Following the race we celebrated at Clancys with our group Miles That Matter and Carl Day who was our hero for the race.

The Jeep

Today Dan, Lilybird, and Ryan came out to root me on at the WPAFB marathon.  Dan decided to drive the jeep which does not have a top or doors on at the present.  Lily sat in the front seat and while driving on 675 at 65mph she held her hands over her hair and said, "Boy I had no idea it was going to be this windy today.  This is like a hurricane."  Once they arrived on base and parked Dan jokingly said to Lily, "shut the door" as he jumped out of the jeep.

Lily sat there looking around and around and finally said,  "Ok Ryan what did you do with it?"

St. Leonards

This morning I told Lily we were going to run errands and we drove over to St. Leonards together to the DayAway Adult Day Care area.  When we arrived she asked if she should wait in the car and I said no come on in with me.  As we walked in she remarked about the beautiful gardens outside the door.

After entering we asked for Lisa the director and were directed to her office where she introduced herself to us. She then took us out to the central area where there were approximately 15 elderly male and female "guests" who were scattered about the room.  Some of them were around tables and some were in front of the TV.  Most of them  had coffee cups in front of them, some of them dozing.  I did not observe much interaction at that time among the "guests".  We were introduced to about 5 of the staff and Lisa introduced Lily to all the ladies at the table where she was seated.

I told mom I had to talk to Lisa and then went with her to the office to discuss Lily's history and the DayAway program details.  When we came out mom was talking to the lady next to her who was in a wheelchair but quite verbal.  The lady across the table in the hat was awake now and the other two ladies were smiling.  We discussed mom's choice for lunch and I helped her make a decision as she usually says, "Whatever you think."
Just after that a black lab (I think) showed up name Sophie.  Lisa said she was a Therapy dog who came every Friday to spend the day with the "guests" at DayAway.  Lily's face lit up when she saw the dog so I took that as a good sign and felt fairly confident things were going to go well.  I left Lily telling her I had to go work on the other side of the building and I would be back later to get her.  She just said "Oh okay."

Approximately 6 hours later I came back to get her after enjoying a day to myself and she saw me and said, "Oh there you are.  Where have you been?"  Lisa said she did very well and only started asking about me and her purse (which she did not bring) the last hour.  She said she was able to come up with many words for a crossword puzzle that the staff worked on with the seniors.   Just then Sophie the Therapy dog came over and mom said she had just been playing with her.

Outside the building Lily again remarked about the beautiful garden and when I asked how she enjoyed her day there, she said, "Well it was fine.  I didn't do much."  She really couldn't give me any specifics and by the time we arrived at Krogers (about 5 minutes away) she had totally forgot the whole experience.  I am curious to see how many times she will have to attend before she will start remembering people and events from there.  Overall  I felt pleasantly surprised about the experience for mom and myself.

Stroller for Molly

Mom and I walk the dogs every day around the block.  Recently Molly our 9 year old pug has been having trouble making it around.  She gets very short of breath and begins to limp so I end up having to carry her part way which is very tiresome as Molly is quite heavy.

On a recent walk I said to Lily,   

"I think I need to find a stroller for Molly so I don't have to carry her.  That way she can still come with us.  Mom what do you think of that idea.  I'll let you push Molly in the stroller.  What do you think?"

Mom looked at me and said,

"Dumb ass.  That is what I'd be. Pushing a dog in a stroller.  A kid yes.  A dog no."

Wash Day

On wash day I have to go through  Lily's pockets to remove all her folded napkins which she collects throughout the day. Why so many?  Because she forgets she already has one in her pocket!

Fifteen Minutes

I don't know if it started last evening with coming home from the grocery and immediately realizing we had no dish soap when Mom started washing the dishes in plain water or in the middle of the night when I got up to get a drink of water and accidentally knocked over a large can of Lysol catching it with my foot so the noise would not wake up my husband.  There I sat on the floor about 4am rubbing my throbbing foot wondering if this might affect the half marathon I am running this Saturday thinking, I hope this isn't the beginning of a crazy day!

So all is well in the morning until about 8:15am when I decide to run upstairs to get ready after telling mom for the 18th time that we have no soap so she can't do the 3 dishes that won't fit in the dishwasher and to stay out of the kitchen hoping that if she stays out she will not try to do the dishes again.  Well as I am going upstairs the phone rings so I grab it and head on up and find "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 maybe it wasn't the dogs,  I won't say anymore. So there I am scrambling to be ready at 8:30am to go biking with Leigh Ann, 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!
Needless to say I was quite frazzled, moving towards the grumpy side fast, when I thought, "Well I know what I will blog about today!" 

And when I walked downstairs Lily was just putting the dishes away.

Wish me Luck!

On Friday I have an appointment to bring mom to adult daycare at St. Leonards for the day.  I have been encouraged by my friends to do this to give me some time to myself.  Last year I did bring mom there for about 1 1/2 hours and we sat around with the patients and staff watching them interact. 

Mom never did relax and as soon as we left she turned to me and said,

 "Why did you bring me there with all those old people?"

I said, "But mom you are old."  

"I don't care I don't want to be around old people."

So I am hoping this attempt goes better.

Reflections by the Fire

Tonight Lily and I sat by the fire outside talking about her childhood in Ireland.  I asked her many questions and her memory seemed to serve her well tonight.

"Mom what chores did you do as a kid?"

"Well I didn't do too many.  I don't remember making my bed.  My mother would leave the dishes for me to do.  We had to go out by the road to pump the water and haul it back.  That would be my job.  (She indicated it was about 25').  I use to sweep the cement floor and help to carry in the turf  for the fire.  Sean (her brother) would have to go by cart and pony to the town where the men used shovels at the bog to cut turf in the shape of bricks which we would use in the fire to keep the house warm and to cook.  The house had one big room with a kitchen and 2 small bedrooms, only one fireplace."

"Did your family celebrate Christmas?"


"Oh yeah.  My mother had colored bulbs on wire that she would string across the room.  No Christmas tree.  We exchanged presents some years more presents than others.  Of course nothing like today.  She would make Christmas dinner--roast beef, spuds, carrots, and Christmas pudding or cake.  We would go to church on Christmas day."

"How did you take a bath and where did you go to the bathroom?"


"We use to cart buckets of water from the pump beside the road and heat the water in the fire and then fill a tub sitting on the floor in one of the bedrooms.  I took a bath about 3 times a week.  When we went to the bathroom we use a "po" , a white bowl with a handle and then we had to empty it. We thought that was great.  To do number 2 we had to climb a hill out back and bring some cloths to wipe which we would later wash.  When they got too bad we would throw them away.  Women used cloths when they got their periods also."

"What type of foods did you eat?"

"Well mom made a loaf of bread everyday in the fire.  Brown crust on the outside and white in the middle and we ate it all in one day. We usually packed bread, jam, and butter for school everyday.  We had oatmeal and eggs although I didn't like eggs. Sometimes she would make applesauce with apples.  Every evening we had beef or pork, my mom didn't like chicken but if we didn't have other meat she would go outside, grab a chicken and wring its neck and cook it. I used to run away because I didn't want to see it.  We always had spuds and a vegetable.  Our food was very normal in the war years.  Sugar was rationed though and saved for the tea.  We had plenty of milk which was not cold.  I didn't like it so I wouldn't drink it.  I drank tea and water." 

Wrinkles

Several years ago we took Mom on a trip to Florida and while there noticed mom needed a new pair of eyeglasses as it was apparent her old ones were not the correct prescription.    So I took her to Lens Crafters to have a new pair made.  When the hour was up, Mom tried on her new glasses and kept staring in the mirror at herself.  I asked her what was wrong and she replied, "Look at my wrinkles.  I look awful!  When did I get all these wrinkles?"  So she promptly took off her glasses and said she was not going to wear them anymore because she did not want other people to see her wrinkles! 

Now years later, she still takes her glasses off whenever she meets somebody.

TV

One evening recently I was watching the news with Lily and suddenly she got a rather odd look on her face and said, "Do you think he (the newscaster) can see us sitting here?"  When I said no the relief was quite evident on her face.

A Little under the Weather

I checked on Mom last night before going to bed and found her standing next to the bed pulling her jammy bottoms down.  "What cha doing mom?"  I asked.  "Oh nothing."  as she pulled her bottoms up and attempted to get back in bed.  So I checked her and her bottoms were wet along with her sheets.  She was trying to cover due to her embarrassment.  I cleaned her up and changed the sheets.

This morning I checked on her and found her dressed but I could tell immediately by the smell in the room that she had an accident.  Her jeans were all wet and also another pair of jammy bottoms were wet and laying on the register to dry.  Her sheets were again wet.   I quickly helped her to the shower and stripped her sheets.

After breakfast mom complained of a "stomachache" which she had last week also.  No other symptoms other than she has been a little more confused than usual the last couple of weeks.  Mom rarely has been incontinent or complains of pain.  So putting this together I called her Dr. and we went to see her this afternoon as I suspected she had a bladder infection.  After a couple of attempts to get a urine specimen we were finally successful and it was confirmed she indeed had a bladder infection.

Many times an older person especially one with Alzheimer's may not have the usual symptoms of a bladder infection.  The caregiver must look for more subtle signs such as:

• increased confusion 
• fatigue  
• foul smelling, cloudy urine
• frequent urge to urinate or incontinence
• abdominal pain or crying out when going to the bathroom 
• fever, nausea or vomiting when kidney infection present
  

Ryan's girlfriend

Many times Lily would ask her grandson Ryan if he had a girlfriend and he would say yes.  Lily then would ask him what she looks like and this would be his answer every time.

Well.......She has blond curly hair

             
               and blue eyes


               She is about 5'2"


               and small


               She wears glasses but only to read

               and she is 77 years old.........

                    And about that time Mom tries to hit him.

                              "Dumbass you almost had me believing you!"

      

LilyBird's Favorite German Saying

Mom has repeated this one German line for years now.  The story goes that when she was a young girl in England she met a German man who taught her this saying.  She always said the meaning was not very nice, but was never able to translate it for us.

Well this past week Jenny, my daughter-in-law, kept mom with her for a day and had her out with her talking to her neighbor. Somehow it came out that the neighbor speaks fluent German.  Jenny had Lily repeat the saying and the neighbor translated it as follows.

"You all truly are a shitty people." 

Only mom who has forgotten so many other more important events would continue to remember this!

Dressing in Layers

This morning I slept in till 8:30am and came downstairs and found Lily up and dressed in her purple capri pajamas (pictured in an earlier post) with her purple socks and tan shoes.  She must have been cold because she had on Ryan's gray wool extra large jacket which of course she thinks is hers.  "Nice outfit Mom!"  She looked down and laughed.

A couple of hours later after getting food prepared for a Labor Day cookout I called mom upstairs to get her dressed again for the day with my assistance this time.  I looked for the outfit I placed in her drawers last night and could only find the top so I went to my room to get her another pair of pants to wear.

She really must have been cold because when I had her take off her purple Capri pajama bottoms she had the blue Capri jeans which I had been looking for earlier underneath.  When she took off her blue Capri jeans and her purple socks she also had panty hose on.  My children almost always dress in layers so I guess Lily was just trying to stay in style!

Hope you all had a wonderful Labor Day with your friends and family.

What Happened to my Hand?

This morning my daughter Emily noticed Nana Lily's right hand was all swollen.  Of course Mom remembers nothing about what might have happened.  Her hand was red and swollen and I noticed what I thought might be a small puncture which led me to believe she was stung by a bee.  I called my daughter-in-law Jenny who kept Mom with her all day yesterday so my husband and I could accept an invitation up to Lake Erie and she said yes she probably was stung by a bee.  Jenny heard mom say that bit me and the only thing she saw was a bee flying around, but her hand looked fine so she didn't think too much about it.

All day long mom kept coming to us to show us her hand and how swollen it was compared to the other one.  "I don't know what I did but look at my hand."  After telling her she was stung by a bee for the 10th time we started teasing her with stories which is our way of coping with the repeating questions.

My husband Dan said he liked the look of that hand better because there were no wrinkles.  Mom laughed and said that would be ok if it were her face but not her hand.

Our neighbor Scott asked her if she punched someone?   She laughed and said no.  Teasing her he said well why does Dan have a swollen nose then?

I have noticed when we started teasing her and make her laugh she stops asking the same question over and over.  Somehow humor seems to stay with her

With Alzheimer's disease the individual often cannot remember what happened to them and if there is no witness you might never know.  Thankfully mom is with us who love and watch out for her.  I wonder about those who aren't as fortunate.

Nana Lily's bracelet

When Lily first moved in with us she often would decide out of the blue to walk to the store which was about one mile away without telling anyone.  Her sense of direction was very good then and is still good even today.  However because of her diagnosis I worried that this might be the day she would get lost and not be able to find her way home.  Since she could not remember our phone number or address I put a sheet of paper in her purse with that information.  Sometimes she would leave without her purse just to take a walk so we came up with a plan to have a bracelet made for identification but had to be careful of her feelings because of course she did not think anything was wrong with her.

Her bracelet which we told her was a gift from her grandchildren read on the front:

We love you Nana Lily

If Lost

home phone

and on the back:

Call my Children

street address

city, state, zip

cell phone

We explained that the bracelet was expensive and we wanted the inscription on it in case "the bracelet" became lost so someone could return it.  Nana Lily thought that was a great idea and loved her new gift.

She has not ventured out alone in a long time now but still wears the bracelet....... just in case.

Entering Stage Six

I just read an article from the Alzheimer Reading room  www.alzheimersreadingroom.com/2007/01/seven-stages-of-alzheimers.html  regarding the Seven Stages of Alzheimers.  Barry Reisberg, M.D., Clinical Director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center developed these criteria which may help families understand what the future may hold for their loved one.  Patients live an average of 8 years after diagnosis however this number obviously would vary based on when the diagnosis was made.  Not all patients are diagnosed in a timely manner and may be well  into the disease   before a diagnosis is made.

Lily was officially diagnosed in 2007 by Dr. Jackson a gerontologist in South Carolina.  However she had been showing symptoms for several years.  According the above article I feel Lily is entering Stage 6 of her disease process as I have outlined below.



Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease)

Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:   yes

Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated.  yes

Become confused about where they are or about the date, day of the week or season.   yes

Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s.    yes

Need help choosing proper clothing for the season or the occasion.    yes

Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children.   slipping (beginning to forget names of her own children)

Usually require no assistance with eating or using the toilet.    yes

Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:

Lose most awareness of recent experiences and events as well as of their surroundings.   yes

Recollect their personal history imperfectly, although they generally recall their own name.   yes

Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces.    Knows my name, although usually thinks I am her sister

Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet.    yes

Experience disruption of their normal sleep/waking cycle.  she still sleeps pretty well

Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly).   no

Have increasing episodes of urinary or fecal incontinence.  rarely

Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding.   no

Tend to wander and become lost.  mom still has good sense of direction

Stage 7 is the final stage and hopefully Mom won't reach it for some time.

Cruise Buddies

Last summer our family went on a cruise to the Caribbean visiting the islands of Nassau, St. Thomas, and St. Maarten.  My friend Linda who is also an RN was kind enough to offer to go and stay with mom all week in her cabin to give my husband Dan and I some privacy.  She helped mom with her daily hygiene, makeup, hair, dress, meals, medications, and activities, but more than that she was my mom's friend laughing with her all week.  Once we were home Linda made my mother a wonderful picture book to highlight the cruise and included some funny dialogue in it.

 

The family in Orlando and Lily remembered she forgot to feed her cat! 

"I'm on a ship?  I thought I would go home tonight."

Queen Lily on her throne watching the Atlantis Aquarium. 

"Are those fish real?"

Mom in the congo line.

"I'm on the white team?"

"Can you believe it, George Bush and Laura split?  That's a bunch of crap!"

The Divas

Mom & Linda

Having Mom live with us has been very rewarding in so many ways.  Most of the time we roll with what ever comes our way.  However on occasion the stress builds.  Having people around you who are willing to step in and give you a hand can make the difference between just getting by or being able to enjoy the moments which this journey through Alzheimer's brings us.  Thank you Linda and all my other wonderful friends and family who have helped me along the way.

Christmas 1957

 

 Norbert, Lily, Kerry  

Xmas 1957

While I was driving today I looked over at Lily and she had pulled the above picture out of her purse.  I have no idea where she found it and she didn't either. 

"That's mine. I don't want to lose it so I kept it.  See she doesn't even have her hair combed and he doesn't either."  

Testing her memory I said, "Mom who are those people?  

She said,  "That is me and Norb." 

I was glad to hear she recognized herself and her husband.   She wasn't quite sure if the baby was me or my brother.  However later she seemed to remember this picture was taken Christmas morning so if that was truly the case the baby is me.  Lily would have been 25 years old.

Would you rather tell someone you have Alzheimer's or Cancer?

Today I find myself very upset over an incident regarding my mother where a little flexibility would have gone a long way.   As I am sure you can tell by several of my posts my mother has a unique relationship with my son.  He is the apple of her eye probably due to the fact he is always hugging on her, talking to her, teasing her, or carrying her around in his arms.  We tell him she is the little sister he never had and she loves every bit of it.

Ryan recently was asked to be in an activity where he will be wearing a tux and escorting girls modeling  clothes.    The mother of the boy is invited along with all the girls and their moms. Ryan and myself are considered guests and therefore do not have to pay. 

The day I received the call to notify us he was chosen to do this I immediately thought of how much Lily would enjoy watching this event.  So I called one of the organizers and made the request noting that I would be happy to pay all expenses associated with her coming.

Today I was told that a decision was made that she could not come because  if they make an exception for one grandma they would have to allow all the other grandmas to come.  They know my mother has Alzheimer's which apparently still did not change their decision.  I can't help but wonder if my mother had cancer, another terminal illness, would the answer have been the same.  Someone may say "but your mother may live for several more years." Yes, but by next year she may very well have forgotten her grandson as she has already forgotten her other grandson out of state.  So every occasion now is important to us as a family.

I do not believe those with Alzheimer's disease receive the support and respect that others do with other terminal illnesses.  There is such a stigma attached to mental illness which is sad but true.

Perhaps the answer might have been the same for a grandma dying of cancer, but if so, what a sad society we have that exceptions cannot be made which would enrich that person's life if only for that moment in time.