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Archive for April, 2012

I keep waiting for Uncle C to move into the house we own across the street from us.  My daughter is now living there with her 4-year-old daughter and they are waiting for him.  Part of the deal with her living there is that she is to be his night-time caregiver.  It will be a big job, but she is okay with it.  She is loving and patient with him.  It’s a great deal all the way around.  We are happy to have her and our only grandchild so close, Uncle C will have a nice, safe place he can call home and we get our privacy back.  We have filled the house with furniture, pictures and lovely items that we brought over from Houston so it can feel like home.

We have had difficulty finding a night-time caregiver that we felt comfortable with.   I kept trying, but honestly my husband was resisting.  He was afraid of someone taking advantage of an elderly man.  Believe it or not, it does happen – often.  The one woman who appeared to be perfect as she was a retired registered nurse, had recently moved to our area so was looking for some place to live and was willing to be a full-time caregiver didn’t work out.  She sat with him twice in one weekend and by the Sunday he was ready to marry her.   Uh, no.  Not sure what went on there, but that scared us.

Whenever the subject of moving comes up Uncle C responds with, “I think I’ll be strong enough by the middle of March,” – well, March has come and gone or “I think in a couple of weeks I’ll be strong enough and will have my license back by then so will be ready to go.”  The latest stall tactic is his toe.   Working in the garden together the Saturday before Easter, my husband told me that Uncle C would be moving the next weekend.  Hubby kept assuring me that Uncle C was ready.  To say I was skeptical is an understatement.  As I walked back into the house Uncle C met me in the kitchen saying that as he was walking down the hall he heard a crack and now his toe was hurting.   He finished it with, “I thought I’d be in the other house by next weekend, but I guess not now.  When the wheels starting coming off they really come off.”  Uncle C had my hubby take him to a walk in clinic on Easter Sunday morning, telling the doctor that he thought he had gout.  (Silly me, I put that thought in his head).  He was given a shot of cortisone, more pain meds and sent home.

Now his toe injury has encompassed his entire foot.  He never complains to me about it, he’s never mentioned it to the caregiver, only to my hubby.  He insisted on seeing another doctor this week for his foot.  Uncle C started with the same story he told me, walking down the hall, heard a crack, only now the toe has become the entire foot.  X-rays were done, nothing has become of it, but Uncle C walked out a happy man with another prescription for his pain meds (which we have not filled).  I finally told my hubby to just tell Uncle C that he doesn’t have to move and maybe he’ll quit making us take him to all these darn doctors!

He just keeps stringing my husband and daughter along with “I think I’m almost ready to move,” and they keep falling for it.  Me, not so much.  Just yesterday he spoke to my daughter about moving.  Now he’s just waiting for the handicap rail to be put in the tub.  Well, that’s easy enough.  We’ll get that done this weekend and see what happens next.

For now, I’ve resigned myself to having him in my home “till death do us part,” and he thinks he can live to a hundred.  I guess I’ll be blogging a lot between now and then!

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Growing up I was painfully shy.  I struggled to hold conversations.  I mulled things over in my mind for so long before deciding that it was okay to speak that usually the subject had changed and my opportunity to participate had passed.   I thought of myself as “invisible” (still do at times) because much of the time when I finally did speak no one paid attention.   In elementary school I had a few friends, but was much too shy to invite them over to my house to play.  My mother did not understand this.  She would hound me about inviting friends over.  She tried everything, even guilt saying, “You must be embarrassed of us, that’s why you don’t have friends over.”  That wasn’t it at all, but I have come to realize over the years that people who have never been shy will never understand how difficult it really is.  Although my shyness did subside a bit, it haunted me through high school and into college – until I met my husband.  He is one of those people who does not understand what shy means.  Once we started dating he just wouldn’t let me be shy any longer.  He pushed me, lovingly, to do things and participate in events that I would have never been able to do alone.  After we were married, his job was such that he was required to organize events that involved hundreds of people, and I needed to participate.  The biggest problem was that since he was the organizer of the event, I had to arrive alone which was terrifying.  My hubby knew everyone, I knew few.  I am better at it, but for years it was a huge struggle.

Basically, I still consider myself a shy person even though people who know me now would disagree.  I still do not feel comfortable with some things –  silly things – like asking a clerk in the grocery store where an item can be located, or calling friends to set up a tennis match.  That is why I was taken aback when my kids all agreed that I was the aggressive one in my marriage.

The subject came up when my husband and I were having dinner in New Orleans several weeks ago with our youngest daughter.  My daughter and hubby were talking about how in a relationship there is usually one person who is aggressive and one who is passive.  I was stunned when my daughter said that she thought I was the aggressive one in our relationship.  “Me?  Why would you think that?  I’m shocked!”  They just laughed.

Later that evening we met up with my son, his fiancée and her parents who are good friends of ours.  In conversation my daughter asked my son, “So who do you think is more aggressive, mom or dad?”  “Oh, definitely mom,” was his response.  Again, I was shocked.  I couldn’t believe it.  Just recently my son’s future mother-in-law had laughed about the time their priest told her during pre-marital counseling that she was too bossy.  I’d believe that.  But me?  Turning to her I said, “Well, I knew you were the aggressive one in your relationship, but I had no idea I was in mine!”   With a laugh she responded with, “You own it girl!”

How did I go from the little shy girl of old to the aggressive one in my marriage?  How did I not know?  I’m still having trouble wrapping my mind around that concept.  Aggressive has such a negative connotation.  Perhaps I’d have an easier time accepting if it was called something like – assertive.  I’m the more assertive one.  Doesn’t that sound better?

Anyway, on the advice of a good friend, I’m learning to own it!

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So how has my life changed over the last two and a half years?  Let’s see – my mother has had two hip replacement surgeries, was diagnosed with rectal cancer, went through chemo and radiation before surgery in which she now has an ostomy. In the middle of it all she was also diagnosed with Lewy Body Dementia.  My father had a heart attack and then was diagnosed with atrial fibrillation, yet he is my mother’s primary caregiver.  I worry about both of them.  I go to their house daily because mom waits for me and becomes anxious if I don’t show up.  In the meantime, my husband’s second cousin and her husband (we call them “aunt and uncle”) who lived in Houston became ill.  They both ended up in the hospital and my husband traveled to Houston from our home which is 3 1/2 hours away at least once a week for four months.  I joined him at times, but this all happened at the same time my mother was in the middle of her cancer treatment and surgery.  His uncle was released from the hospital on February 25, 2011, his aunt passed away the very next day and so now his 93-year old uncle is living with us.  He is a very nice fellow but honestly, he is an alcoholic and addicted to pain pills, sneaking and stealing them even though my husband never refuses when he asks for pain medication.   He is non-compliant with his meds, taking too many or none at all, at will.  He has dismissed the home health care nurses because he didn’t think he needed them.  Several of his doctors have dismissed him as a patient, not because his health is so great, but because he refuses to follow their advice.  The plan all along has been for him to move into the house that we own across the street from us.  My oldest daughter is living there now with her four-year old and she is to be his night-time caregiver.  We have a hired caregiver that comes in during the day.  That has not yet happened.  And to top it off he continues to push to get his driver’s license back. 

I no longer ever have time to myself.  I only have the house to myself for brief periods of time maybe once a week when my husband takes Uncle C for a ride to Lowe’s or Home Depot.  My husband and I have very little time alone anymore.  Our days of being spontaneous are gone. 

And through it all I have become bitchy.  Yes, it’s true and was so confirmed by my oldest daughter yesterday when she said, “Mom, you are always bitching.”  What a gracious way of letting me know that.  It really hurt my feelings.  I’m not angry with her, but I think there probably could have been a much nicer way of saying that other than “you are ALWAYS bitching.”  It’s that ALWAYS word that bothers me the most.  ALWAYS.  I really kind of hate that word.  It doesn’t stand true for many things although people throw it around a lot.  People aren’t ALWAYS happy, or angry, or sad, or bitchy.  The grass is not ALWAYS greener on the other side.  You are not ALWAYS tired, nor do you ALWAYS have too much to do.  You get what I mean?

So, have I become bitchy?  Yea, probably.  Am I ALWAYS bitchy?  No way.  But believe it or not, I do have quite a bit on my mind and try as I may, sometimes  I become bitchy.  Deal with it.

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Mom wants very badly for my youngest daughter to have a boyfriend.  Why, I’m not sure.  So…she has started seeing guys that my daughter has dated in the past.  How funny! 

We first noticed something was not right with mom almost two years ago when she started talking about my daughter’s boyfriend with the red convertible who was in medical school.  She would see them everywhere – at the casino, when he bought them all a steak dinner, when they drove up together with my grandchild sitting on “Mark’s” lap in the front seat of his convertible.  First of all, there is no Mark, never has been.  Second of all, my granddaughter is my oldest daughter’s child and she would never, ever have let her daughter sit on someone’s lap in the front seat of a convertible.  I had to break it to mom gently that there was no “Mark” in medical school who drives a red convertible dating her granddaughter.  That was hard.  She didn’t understand at first and wanted to know where she had gotten that?  Beats me!  She now accepts that there is no Mark and has since moved on – thank God.  But I guess she has substituted ex-boyfriends for Mark. 

A couple of weeks ago mom mentioned to my daughter that boyfriend A had stopped by that day.  “I guess he saw your mom’s car at my house and thought it was you.  He stopped by to see you,” mom told her.  They haven’t dated in over four years.  And then on Easter Sunday mom mentioned that boyfriend B had stopped by.  My daughter graciously responded with, “Well I guess he was looking for me Granny.”  She only dated that guy for a couple of weeks.

It’s funny how the mind thinks.  When mom wants something badly she just makes it happen in her mind.  Too bad she can’t make it happen in real life, I might have a very nice son-in-law who is a doctor by now.  🙂

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I am honored to have been nominated for the Sunshine Award by fellow blogger frangipani @ http://frangipanisingaporenicum.wordpress.com.  I am a first time blogger and started my blog in an attempt to keep my sanity through a difficult time.  I feel blessed that I have received so much support from other bloggers that either have experienced or are now dealing with the same issues as me.  And if I can help someone along the way I feel thankful.

The Sunshine Award is to award “bloggers who positively and creatively inspire others in the blogosphere.”  The rules appear fairly simple and are as follows:

1.  Thank the person who gave you this award and write a post about it – thanks again Frangipani

2.  Answer the questions below.

3.  Pass on the award to 10 fabulous bloggers, link their blogs and let them know you awarded them.

Okay, here goes…

Favorite Color –  the color of my granddaughter’s eyes, a beautiful shade of blue

Favorite Animal – a bird, the mere fact that they can fly is amazing to me

Favorite Number – I don’t really have one but let’s go with number 1

Favorite Drink – I have two, my morning coffee and evening Cabernet 🙂

Facebook or Twitter – I don’t know anything about Twitter really but I do have a Facebook page even though I never go on it.  So I guess Facebook wins.

Your Passion – My family

Giving or Getting Presents – giving

Favorite Day – Sunday, our Family Night when the kids come home bringing friends, my parents come over and we all enjoy a meal together.

Favorite Flowers – Roses

And my list of nominee/winners:

http://danceonthewhale.wordpress.com/

http://onesweetiepea.wordpress.com/

http://notquiteold.wordpress.com/

http://bakerbettie.com/

http://truthletsandthoughtbits.wordpress.com/

http://FundeMental.wordpress.com/

http://angelsandmiracles101.wordpress.com/

http://brookemcgillivray.wordpress.com/

http://sweetpeaskitchen.com/

http://mydementedmom.com/

Thanks again to frangipani.  No pressure to the bloggers I’ve nominated.  Just enjoy and have fun with it.

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Sitting on the patio with mom yesterday she suddenly exclaimed, “You need to do something about that hair!”  I burst out laughing – mom of old was back.  Before I started highlighting it, she was always giving me trouble about how grey my hair had become.  Actually, I meant to call for an appointment earlier in the day, but got caught up in other things.  I immediately picked up the phone and dialed my hairdresser.  She can’t see me until the 17th so I guess I’ll hear it from mom for a while longer.

Good to have you back mom.  🙂

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My mother has hallucinations.  That’s a fact.  It’s part of the type of dementia she is believed to have – Lewy Body Dementia.   The diagnosis was made by her doctor strictly based on her symptoms.  The only way to know for sure is through an autopsy.  I’m not ready for that.  (See http://www.lewybodydementia.org/ for more information on Lewy Body Dementia.)

Initially the hallucinations were strictly visual – people she wanted to see, money she wanted to win at the casino so she saw it in her wallet, etc.    I guess when she really wants to see someone and they aren’t around – poof – they appear before her eyes.  She sees me multiple times before I actually arrive in the afternoons.  She sees her sister walking towards the patio almost daily.  She sees my granddaughter often.  Up until now, other than spotting that dreaded Martian on the roof and repeatedly seeing her neighbor with Alzheimer’s that she does not like, she mostly has happy hallucinations. 

But recently I have noticed a change.  The hallucinations have become visual and audible.  Every time she is at my house she hears my granddaughter calling for my hubby.  “Listen, there’s Peanut calling for Pop.  ‘Pop, Pop’, do you hear her?  She must be standing on the end of the car port calling for him.”  I only smile.  And this week after seeing me and her sister repeatedly, she saw a snake slithering into the neighbor’s back door.  I just pray these hallucinations do not become dark and scary which they are sometimes known to do. 

It’s not just the hallucinations that are different.  Walking for mom has become very difficult.  She now shuffles, a kind of side to side thing, stiff-like and she can only take a few steps before complaining of the pain in her legs.  She also has been falling more.   The falls are of real concern since she already has two artificial hips and damaging one would be awful.   Again last week, walking through their bedroom with her walker mom fell between the bed and a dresser.  She never remembers what caused her to fall, she just ends up on the floor.  Unfortunately, that too will probably continue to get worse.

But her memory, at least the long-term memory is quite remarkable.  She still remembers names of people and places from long ago.  But ask her if she saw her sister today she always responds with, “Oh yes.  I walked over and visited with her this morning.”  Unfortunately, that didn’t happen and dad always feels the need to correct her on it.  She just looks very confused.  Every time she sees my 4-year-old granddaughter mom asks if she went to school that day.  “No Granny, not until September!” is the answer.  Mom doesn’t remember she’s asked before and my granddaughter doesn’t know why Granny keeps asking the same question. 

She continues to mostly just sit quietly while others talk, although I have noticed her trying harder lately to be part of the conversation.  This is such a huge change in mom’s personality.  Even Uncle C has noticed, commenting, “Your mom looks like she wants to say something but she can’t find the words.”   I often wonder if she is aware of her situation and I think the answer is yes – to a certain degree.  She has made comments to me just recently that leads me to believe that.  One day while riding in my car to pick up my oldest daughter from work mom commented, “Well your dad will be happy.  He won’t have to worry about me for a while.”   Last week while dad sat gluing together a 250 piece dollhouse for my granddaughter mom said, “I wish your father had that much patience with me.” 

Are these changes  the slow progression of this awful disease?  Probably.  Can we stop it?  Unfortunately, no.  But we are still trying like hell to keep her with us, both mentally and physically, as long as we can.  So far, I’m pleased that the downward progression has been relatively slow.  Could it be the coconut oil?  Maybe – hopefully.  But whatever happens we will all just keep loving her and caring for her.  I want with all my heart for mom to feel the love that surrounds her, know that we all care so deeply about her.  I pray she can feel that to the end.

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