Sunday, February 28, 2010

Remember for Me

This morning one of my articles was put on the Alzheimer Reading Room blog which is published by Bob DeMarco who lives in Delray Beach Florida.  Bob is the primary caretaker for his mother who has Alzheimer disease. His blog is a wonderful site offering a wealth of information, insight, and support for those with the disease and those taking care of loved ones with Alzheimers.
The link is directly to my article and my article I posted below the link.

This evening Lily, Dan, & I attended the Dayton Contemporary Dance Company's (DCDC) winter concert which was fabulous.  Prior to the performance we attended a reception for VIP season ticket holders.   They had a nice spread of hordeurves, dessert, & beverages.  Lily remarked that she did not remember ever being treated like this at another dance event.

I replied, "Well this is their way of thanking the people who purchased their most expensive tickets." (which we do by the way to support our daughter who is in DCDC2)

Lily said, "I do that?" as she was sipping her coffee.

To which I replied kiddingly, "No, we do that. You are just along for the ride."

Lily, laughing,  about spit out her coffee.  (She has been doing that a lot lately!)

One of the dance numbers had a voice recording going with a line that stuck in my head.

"When I die, remember me because that is how you will keep me alive."

My mind then jumped to:

"When my brain dies, remember me because that is how you will keep me alive."

which led to:

"When my brain dies, remind me because that is how you will keep me alive."

With Lily I might decide why bother bringing her to dances, shows, movies, events, cruises, etc.

She won't remember, will she?

With Lily I might decide why bother dressing her nice, applying her make up, feeding her favorite foods.

She won't remember whether I do or not or even why it matters, will she?

With Lily, I might forget to include her in conversation, encourage her to laugh, forget what she always enjoyed.

She won't remember, will she?

Maybe not the way we suppose is right.  However, inside somewhere in her core, deep down,  I know she does.  I believe she picks up on the feelings of those around her.  We, her family, are her memory.  We are the reminders to her life.  We are what keep her alive.  For without that she might as well be dead.

"Remember for me because that is how you keep me alive."

Saturday, February 27, 2010

Blooming Lilys

The bulbs we planted from the kit Anne our neighbor gave Lily have bloomed.  The flowers look like miniature Lilys which I think is quite appropriate.  What do you think?

Friday, February 26, 2010

My Hair

Lily looking in the mirror..........."Hey I'm white.  What happened?
                                   I use to be RED.  Remember?"

Me not knowing how to break the news......"Well Mom I hate to tell you this but you've grown old."

"Well.   I didn't like the red anyway.  I was glad when that was gone."

Wednesday, February 24, 2010

Tuesday, February 23, 2010

Ugly One Over There

I had Lily's post up on my computer screen from a couple of days ago.

Lily said,    "That's an ugly one over there."

Walking closer she said,

"She is wearing the same thing I had on yesterday.  I don't know why she has her fingers up like that. 
She must be joking.  That's my mom.  She is wearing my jacket or maybe I was wearing hers."

Monday, February 22, 2010

Thoughts on Showering

Alzheimer's Reading Room: Cleanliness is Next to Godliness -- Let's take a Shower

I read this article from the Alzheimer Reading Room today and it got me thinking so here is my response to this article.  I included the first two paragraphs of my response as a comment at the end of the article.

I have to agree the shower/bath issue is a very challenging aspect of caring for the Alzheimer patient.  Mom too also dislikes taking a shower.  She especially dislikes water over her face.  I know Alzheimer patients typically do not like to be in the water and with mom she has the added dimension of never learning to swim so water to her has always had a fear component attached.

Lily grew up in Ireland so she has always felt Americans spend too much time in the shower anyway.  As kids, as long as we took a bath or shower once or twice a week, she was happy with that.  As a teenager though I too fell into the American pattern of showering everyday.  My kids (age 18 & 21) sometimes take 2 showers per day!
However I have really never forgotten my roots so when Mom stopped taking regular showers on her own, I thought to myself why push this issue.  I am content with her taking a shower 2-3 times per week.  She has an aide on Thursdays who makes sure she showers and then I do the same on Tuesday and once during the weekend.  I feel it is important as caregivers to recognize when relaxing some of our own high standards might be in the best interest of our loved ones and relieve some of the stress we deal with each day.

With mom I just say time for your shower and off we go. I don’t ask her if she wants to take one or go into any reasons why showering is important.  Often I find the less I try to convince the better.  I tell her to get undressed and then I go gather up clean clothes.  She is able to turn on the water herself and hop in, however I always check the temperature because I have found on occasion the water to be quite hot or even cold and she obviously does not recognize that.

Recently I started washing Lily’s hair once per week.  I had assumed (wrongly) that Lily had been washing her own hair except on the occasions of going to the salon because her hair never looked oily and did not smell bad.  However last visit to the salon they showed me where her scalp in the back of her head was a little crusty, red, and scratched (although I have never seen her scratch her head).  At that point I realized I was not doing a good job in this area, therefore I have added the weekly task of shampooing to my list.
While shampooing her hair  I noticed that if I hold her hand the whole time her head is under the water for rinsing she is much more relaxed.  I also have a towel close by to help her dry her eyes immediately when getting out.  She too just washes the most important areas and I take her for periodic pedicures so her feet get a good soak!

Once Lily is in the shower I remove all her dirty clothes because if I don’t she tends to put them back on.  I then do her hair and make up. I suppose this is where it gets a little tricky.   I could still let her do her own hair and make up because she would.  The problem is that with her hair she just wets it and brushes it straight back which looks terrible.  With her make up she paints on black, brown, or blue eyebrows whichever color she finds first and cakes on her make up.   I have made a conscious decision to take over these jobs knowing that she will forget how and also knowing I am ratcheting her independence down another notch because………
Lily has always cared so much about her appearance.  Her make up and hair always had to be on to leave the house.  She would be mortified knowing I was letting her be seen by others looking bad or that people might be talking about the old lady with the blue eyebrows.    Same with her clothes, she always dressed so nice and now does not have that same capability so I always try to make sure her clothes are clean, matching, and look nice.

Sunday, February 21, 2010


Mom and I were discussing church this morning.

"What do you do there?"    (Remember Lily has been a long time non-believer after growing up Catholic)

"Praying for you."  I replied.

She started laughing,  "Oh yeah,  I don't believe that for a minute."

I said, "Mom I bet your mother is turning over in her grave hearing you talk like that."

"Ah heck, she turned the other way along time ago."

Saturday, February 20, 2010

Up Yours

As we journeyed to Ryan's last seasonal basketball game last night Dan, Dan's sister Paula, Lily, and myself were laughing and carrying on in the car especially Lily and Paula.  Listening to their antics I said,

"You know mom after the game you and Paula can drop Dan & I off and you two can go out and party."

Paula said, "Lily did you remember your ID?"

To which Lily replied, "No."

"Well, what happens if you get carded?"

While giving her famous two finger sign she said, "I will tell them UP YOURS."

Friday, February 19, 2010

Video clip from Alzheimer Reading Room

The video, Where America Stands on Alzheimer's, discusses facts about Alzheimer's disease, the search for a cure, and the baby boomer generation.....

Alzheimer's Reading Room: Alzheimer's In American -- Where American Stands Video

Thursday, February 18, 2010

Wednesday, February 17, 2010

Leap Year

A short while ago my great friend and neighbor Anne picked Lily up to take her to the movies.  I dressed Mom in the green jacket Anne had bought her for Christmas and in the picture below Lily is also holding the bulb kit Anne had purchased her a couple of weeks ago.  The bulbs have grown quite a bit the last couple of weeks and will be blooming soon.  The girls are on their way to see Leap Year which Mom will love as it was filmed in Ireland. I am anxious to hear how it went and if she remembers any of the movie.  She probably won't but will love every minute in Anne's company.  Anne is one person Lily does remember and she loves visiting with her.  Because Anne's mother also had Alzheimer disease she is very sensitive to Lily and the impact on our family.
Support is so important and I am very fortunate to have so many wonderful friends.

Monday, February 15, 2010

Sunday, February 14, 2010

Happy Valentine's Day

Nana Lily and Ryan's conversation this morning in the kitchen as Lily was looking at the morning paper.

Lily:     "I don't know how they come up with this stuff everyday."

Ryan looking at what she is reading:   "Well it's the obituaries so it kind of depends on who dies."

Lily:  "Oh well, I don't look at that, even if I was gone,  I still wouldn't look."

Saturday, February 13, 2010

Bloody Stone

After the basketball game tonight, Paula had Van give Lily a hug.  After hugging him Paula told mom to feel the muscles in his arms not realizing what Lily might let loose.

"That is a bloody stone in there, G-d Damn it.  Don't worry if something happens to that arm, you have a G-d Damn stone in the other one too."

While saying that she started laughing so hard she was crying.

Van & Paula

Friday, February 12, 2010

Out of the House

Yesterday Lily and I got out of the house. Between the snowy weather

and being under the weather we have been cooped up for days. So for a couple of hours we were out running errands and stopped for lunch.

Mom's memory has been on the upswing the last few days recollecting recent events. For example Ryan told me when he took her out for dinner a few nights ago she said to him "Oh you played well (at his basketball game). Paula (Dan's sister) sure acts silly at those games." He couldn't believe she remembered the game much less provide some details. 

Also when I was driving her past St. Leonards she said, "That church is really nice inside.  I was there last week with a woman."   I was surprised she remembered and shocked she went to church!

Wednesday, February 10, 2010

Self Admiration

I was showing Mom the picture from the previous post and asking her if she remembered who they were. She said,

pointing to Maureen, "Yeah she' know.....she was with us here once.....from New York."

pointing to herself, "She's better looking than the other one but I can't place her."

Tuesday, February 9, 2010

Lily and her cousin Maureen Burlace

Here is Lily with her cousin Maureen whom she was always told that they looked alike. Their fathers were brothers and came from a family of 13. Maureen and Mom only saw each other infrequently through the years and this picture was taken on their last visit together around 2004 or so.

Monday, February 8, 2010

Under the Weather

Today I am a little under the weather.  Some type of virus bringing me body aches, sore throat, and congestion.
Lily had it over the weekend but seemed to have more congestion in her chest along with a cough.  When I would tell her to stay out of the kitchen and just relax as she was sick she would say,  "What me?  I am not sick."  Sometimes a bad memory is a good thing -- not remembering she was sick she never acted sick and seemed to bounce back pretty quick. 

Saturday, February 6, 2010

Alzheimer's Reading Room: A Virtual Alzheimer's Support Group

In this post Bob DeMarco discusses the possibilities of a virtual support group requesting suggestions and comments on this idea from readers of his blog.
On a personal note I know when I receive comments or even a new follower I can't help but feel a "lifting of spirits" knowing that someone read something I posted and was inspired to comment on it.  Just having followers allows me to imagine that someone out there is reading my posts (whether they actually are or not).  So in a sense these people who comment on my posts are my support group which I must say has helped me through some difficult times.
I would encourage all who read my blog regularly to please consider becoming a follower and comment freely for all the reasons I have listed above.  My thanks go out to you in advance.

Alzheimer's Reading Room: A Virtual Alzheimer's Support Group

Friday, February 5, 2010

Pleasant Surprise

Yesterday I read Bob DeMarco's article regarding Urinary Incontinence and then posted a question to him regarding night time incontinence.  Later in the evening I was pleasantly surprised to see he had already addressed my question and gave me a very detailed response.  More than that though he prefaced his response with a very kind reference to my blog. 

The last couple of weeks have been very stressful and not caused by Lily  (imagine that!).   Bob your words really made my evening and I feel good knowing I may bring cheer and smiles to my readers.

Below I have copied the preface to his response to me and below that is the link to the article.

Before we get into urinary incontinence, I want to say a few words about Kerry Runyeon. Kerry has a great blog that is just full of life. I read her blogging because it makes me smile, makes me feel happy, and reminds me of the challenges of the Alzheimer's caregiver. Reminds me I am not alone, and that there are many many of us dealing with the same, or similar issues day in and day out.

Kerry writes with a smile. I often think to myself, I should try to do that more often.

Here is a recent example from Living in the moment with Lilybird -- Last Twelve Hours.

 Alzheimer's Reading Room: Urinary Incontinence -- Follow Up with Kerry Runyeon

Thursday, February 4, 2010

Sue's Eulogy to her Mother

Today I received in the mail a sweet card from my cousin John's wife Sue who recently lost her mother due to Alzheimer's Disease.  She also included a copy of the eulogy she gave at her funeral.  I was deeply touched by both the card and the eulogy and am posting some of her comments which were most meaningful to me.

from the card......

"There are some cards that have been more difficult than others to write and yours is near the top of that list.
I guess it's because I know that you know.  You live with your Mom, you watch the changes, and you know.  No matter how much things change it's still your Mom."

from the eulogy for Marie Elizabeth Kurilich (1925-2009).......

"As for me, a word that has been in my head when I think about Mom is 'essence'.  Dementia took away much of her thinking ability, but it left untouched the essence of Mom---pure goodness, kindness, and sweetness."

"One of Mom's favorite sayings was: 'Everything always works out for the best.'  Maybe it was this deeply-held belief that shaped the path on which the Alzheimer's would eventually carry her.  Unlike many people with the disease, Mom somehow retained her optimism and serenity literally until her very last day.  She was incapable of holding anxiety about the future, or worries about the past, as she lived only in the present moment.  And her present moment was always a happy one.  Sometimes different ones of us would puzzle about what the meaning of spending a happy day with Mom was, when she would shortly thereafter forget that it had happened.  My husband John would say that all we could do was to help to give her as many 'happy present moments' as we possibly could.  We all tried our best to do that."

"Mom's illness took much of her mind, but it left the essence--her pure goodness, and her sweetness.  That is what we will miss, and it is what will be missed by everyone who knew her.  She loved and was loved."

                                                   John & Sue 2008

Wednesday, February 3, 2010

Christmas in Seattle 1964

Our last Christmas in Seattle as a family before my father died.

Tuesday, February 2, 2010

Alzheimer's Reading Room: Mammograms for Women With Dementia? What is the Right Decision?

Alzheimer's Reading Room: Mammograms for Women With Dementia? What is the Right Decision?

This is my comment to this article.

I don't know that there is one right answer. Each case is unique and looked at from a personal perspective. So many angles such as where along the disease spectrum the patient falls, the families ability to let go, the patient's resources, society's resources, and maybe most importantly what would be done with the information found.

With my mother the decision would be easy. No mammogram. The process would be disruptive, painful, and upsetting to her. If the outcome was cancer I would not put her through surgery, radiation, or chemotherapy. The risk to her mental status would be too great and any more of that lost would defeat the purpose of treating the disease process. Prolonging her life just for the sake of keeping her alive holds no appeal to me nor would it to her. Past conversations with her prior to her dementia leave me at ease with this decision. She would rather die quicker of a more acute illness than linger in the Alzheimer process for who knows how many more years.

I am determined to make these years with me the best I can but will not provide measures to prolong her life. Quality over quantity is our choice.

Monday, February 1, 2010

Mom's hairdo's

As I have mentioned in the past, Lily has always cared about her appearance.  She would never leave the house without her "face on" as she said nor her hair fixed.  Here is Mom in 1972 with a hairpiece  and at an earlier date in a wig.