Belts, Belts, and Belts

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

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!

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

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

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

(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

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

The New Rake

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

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

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

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?

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

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

Loving Feelings

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!"