Not her daughter...

Just a quick funny from Mom:

Mom seems to be especially confused right after she wakes up.  I'm guessing it's because her dreams take her to another time when her memories are stronger.  So, when she wakes up her present doesn't seem real.  Anyway, she took a short nap this afternoon and woke up very agitated.  We had a long conversation (that is a very generous word for what we did, lol) about where and who she was.  She asked who I was and I said, "I'm your daughter."  She responded very angrily, "You couldn't be my daughter.  I'm younger and better looking than you!!"

The wall...

Yesterday I shared that my brother saved the day with Mom.  What I didn't emphasize enough was that he also saved my sanity.  I had basically slammed into a wall with the expected results... it hurt.  And, just like Wiley Coyote trying to get dinner, I was doing the only thing that I knew how to do... I was backing up and slamming into it again.    Each slam hurt more than the last, until my body and my mind just couldn't take it any longer. 

But a funny thing happened when he offered and gave help... he moved the wall away from me just a bit.  I'm still running for it but now I have time to think about what will happen if I allow myself to slam into it.  And the time is just enough that I am able to think of things that I would rather do than slam into it.  This has allowed me to become more like the person that I believe I am.  And, in doing so, Mom has become calmer.  And a calm Mom nudges that wall just a little farther away from me.   She is still combative and argumentative.  The difference is that I'm not. 

A helping hand...

It has been a rough few days.  Mom's situation with the medical issue got much worse... not her condition... but her refusal to get help.  She yelled at me all weekend that she needed to see a doctor. So, first thing Monday morning I got her into the car, got her to the doctor, and and was able to do a little bit of the paperwork before she began attempting her escape.  She started very quietly, just a few steps towards the door.  Soon, she began vehemently shaking her head and screaming that she was NOT going in there.  Short of physically forcing her (and, at this point I couldn't have done it anyway) we had to leave once again.

In the parking lot, I called one of my brothers hoping that he could come take over.  I sobbed that I couldn't do it anymore.  I was done.  He listened and said all the right things and then he told me his plan.  I took her home and let her yell at me for the rest of the day about how badly she needed to see a doctor. Oh, the irony.

Then first thing this morning (Tuesday) I loaded Mom up, took her to breakfast and then drove to the doctor's office.  As I approached the office, I saw my brother standing there at the entrance with a wheelchair.  He opened the door and said, "Hello, Mrs. Bullock.  We're all ready for you."   He took her in and I drove away.  30 minutes later he texted me and said they were done and that he was filling her prescriptions. 

Tonight I feel like the weight of the world has been taken off of my shoulders.  It is amazing how a helping hand at the right time can make it all better. 

Roommates...

I used to have a roommate, who like most roommates, sometimes drove me crazy.  We were good friends and we spent a lot of time laughing together.  But she had some really annoying habits.  Most were superficial things that occur when two strangers live together.  But, I used to gripe to my mom every time she irritated me.  And I never realized how bad my griping had become until my mom admitted that she disliked her.  I was shocked!  She was a great person.  But, all my mom ever heard was the bad stuff.  She never heard about the time that we declared a water fight on our neighbors but never announced it to them.  Or the all-night laugh fests with our pals Ben & Jerry.  Mom was never privy to the positive times.

I bring this up because I have a different roommate now.  And I feel like I only talk about the painful "she's driving me crazy" stuff.  Don't mistake me, this is real and it is horrible.  But, there are positives.  And just as soon as I think of some I will tell you all about them.

I was going to stop there because it made me laugh.  But, that wasn't the purpose of this post.  Of course, there are positives.  Some days are better than others.  I just don't want anyone to think that every moment of every day is horrible.  Every moment is a challenge, but they aren't always bad.  And as stressful as these times are for me, I cannot fathom how scary and horrendous they are for her. 

Sweet, little, old lady...

Today has been one of those days that I just question what I am doing here and why do I even try. 

Mom has a non-emergency condition that needs to be seen by a doctor.  It causes her some pain that is manageable with some Tylenol but still needs to be addressed.  She reminds me every chance she gets that I am cruel and inattentive by not taking her to the doctor.  NOW.  She has attempted to walk to the doctor on a Sunday afternoon.  She has threatened me to get me to take me to the doctor. 

Now, my side of the story.  I have tried on several occasions since Sunday to get her to the doctor.  Each time she refuses.  Either she denies she has a problem or refuses (physically and verbally) to go.  Today I had had enough.  Come Hell or high water she was going to see some one.  I took her to Urgent Care because the other appointments had to be cancelled.  I try to help her out of the car.  Nope.  She doesn't need a doctor and she will not go in.  Short of dragging her, I am forced to get back in the car and drive home.

We walk in the house and she starts yelling at me that she needs to see a doctor!!  Yes, Mom, I know you do.  And judging by the aroma in here, apparently, you now need a shower.  What proceeds can best be described as verbal chaos.  Between the two hours of her arguments that she took 3 showers last night and the demands that she be allowed to put the nasty clothes that she is wearing back on... we did not make it to the doctor again today.

All of this has me wondering whether every Alzheimer's patient is this stubborn.  Is it their way of maintaining some semblance of control in their lives?  Is it another type of short circuit in the brain?  Why does asking someone to do something so simple have to be so very hard?

And then it hit me.  This is the woman who drove around on an expired license for 2 and a half years!  Why?  Because she was told that she had to renew it.  That's right someone was telling her she had to have a current license so she refused to renew it.  Stubborn?  You bet. 

So, why am I writing this and showing everyone our tension filled and trivial situations?  Because Alzheimer's is not always to blame for the crap in my life.  It might aggravate it.  And it certainly brings it to a head.  But, it does not turn a stubborn woman into a sweet, little, old lady.

She knows what she likes...

Just a quick funny from Mom:

Tonight she asked me if I would like some tea or coffee.  I said, no, that I don't drink either.  She responded with, "I drink coffee when I go out because they know how to make it. That's why I only drink water here." 

She can feel your love...

This is a note to my family and friends. 

I know that you love my Mom.  She is your sister, aunt, grandmother and friend.  I know some of you want to come see her.  But, she is not here anymore.  She is gone.  Watching this hideous disease rob my mother of her very dignity breaks my heart every moment of every day. And while I will not keep her from you, I truly don't think any of you are prepared to see her as she is now.  Each day I get up and think that as long as it isn't any worse than the day before that we can get through it.  But, each day is worse than the day before.  What worked yesterday doesn't work today.  And, what works today probably won't work tomorrow.  Our chances of her having a good day are very slim.  And getting slimmer. She would be devastated to have you see her like this. So, I ask you to continue loving my Mother.  But, please remember her the way she would like to be remembered.  Full of piss and vinegar.  Avoiding cameras.  Making peanut butter gravy on steak and rubber hamburger in her tacos.  And, when the need to see her becomes strong?  Please offer an extra prayer for her to find peace.  I know that deep inside where her very soul remains intact and whole, she can feel your love.

A message of thanks...

I started this blog pretty much on a whim.  Most of my early entries (deleted now) were about random things.  But I soon found myself writing more and more about my experiences taking care of my Mom.  It was a natural transition to dedicate my writings to my journey as an Alzheimer's caretaker.

What I never anticipated was the relief that I felt when I shared my experiences, and more importantly, my feelings.  It has been bittersweet sharing the funnier, lighthearted times.  And talking about my shortcomings and disappointments has been both eye opening and painful.  But, mostly, this experience has been very cathartic when I talk about the struggles of each day.

Some days, it truly feels as if I am baring my soul for the world to dissect and judge. And I wonder if other bloggers experience my same hesitation as they hover the cursor over the Publish button.  Is this entry too much?  Do people really want to know this crap?  How can anyone possibly care about this?  I usually end up telling myself that no one will read it anyway.  So, I push the button.

And then this amazing thing started happening.  People began responding and sending me private messages.  Some sent words of encouragement to let me know that I am not alone.  Some were messages of appreciation that I was able to put a face to the disease.  And a few were a combination of both.

So, this post is a message of thanks.  Thank you for sticking with me.  Thank you for being there for me and for caring.  You are all amazing.

Like a thief in the night...

A few weeks ago, I posted some of the myths concerning Alzheimer's. But, in my experience, the most commonly held misconception is that Alzheimer's is simply a disease of forgetfulness. I've heard it referred to as "Old-timer's disease", inferring that it is just part of getting old.  But the forgetfulness is what people originally observe... the tip-off that something is wrong.  And while that is certainly a very big part of the disease, there is so much more that people just don't see. 

We have experienced everything from her accusing me of reporting her for using too many ice cubes to her trying to get out of a moving car.  Twice.  Reality has disappeared.  She asks questions over and over and becomes furious if the answer is not what she believes it to be.  We have become very accomplished liars just to pacify her and keep her calm.  She trusts no one, yet, panics if I am out of her sight. The only thing that we can count on is frustration and anger. She imagines conversations and believes them to be true.  Her few remaining memories are based on a tidbit of fact, yet, remain true for her. The many family portraits on the wall have become something to count rather than a collection of memories.  She has always had a strong faith in God but now believes she is Catholic.  Many of her fears no longer scare her.  Yet, many of the things that have long comforted her now are the enemy.  At this point, the only consistent thing that she remembers is her sister Kathy.  Those memories bring her comfort.

On many occasions, I have compared Mom to a toddler.  But, with a small child there is excitement each day of what the child will learn and acquire. The reality of Alzheimer's is that it is a deadly disease.  It will slowly take away more than her mind.  And instead of excitement, we face each day with dread wondering what this heinous disease will steal this time.
 

My Day...

I have always been able to see both sides of almost any situation.  I was lousy in debates because I would agree with both sides.  I am the kind of middle of the road voter that politicians should seek out (but they don't).  I can empathize and sympathize with the best of them.

But today is Tuesday.  And Tuesday is my day, my time, and my choices.  It is my day to be selfish.  So, why am I here putting up with this?  Because I don't have "plans".  Or, rather, my plans aren't important enough to be considered.  I am here because I understand that things come up that make giving me my day inconvenient.  So, here I am dealing with the very things that make a selfish day necessary.  And I am not feeling very compassionate or empathetic right now.  But I am feeling pissed.   

An Alarming Thought...

Going shopping with Mom can be quite an experience these days.  She tells random people bits of useless information.  Most people smile kindly and keep going.  She has long, one-sided conversations with people who don't speak English.  She waves at kids and tells them thank you when they wave back.    She offers people a nickel if they will take her home with them.  She walks at least 5 paces behind us.  Always.  Today we were in the middle of our second store when I realized that her pants were on backwards.  All silly things in which I can see the humor.

Lately, though, she has been setting off the shoplifting alarms when we leave and when we enter stores.  I have searched her purse and her wallet and cannot find what is activating it.  The stores don't seem to mind when we are coming in but they often question us as we are leaving.  I have a feeling that one of these days we are going to get someone who won't believe me and will want to strip search her.  That's okay by me as long as they put her pants on right when they are through.

Just For Grins...

I had this posted on my Facebook page but it just makes me smile so I want to keep it a little more permanently.

This reminds me of Mom when she wakes up before I do:


One morning she even asked me, "Did you know that you are asleep?"





This is obviously a Disney/Pixar picture from Finding Nemo. 

Darkness...

I am trying so very hard to find positive in this entire situation.  But, tonight it's just not working.  I am feeling lonely and sad.  I am in the midst of people but I feel invisible.  I know that I am loved but I feel betrayed.

I know that this is not about me but I want to be selfish.  Where is my caretaker?  Where is my support?  I know people have their lives and their issues but just a kind word or an acknowledgment that I am here would mean the world.  My daughters do an amazing job of making my life easier and giving me a reason to get up and embrace the sunshine each day.  They have been forced to give so much.  They have given their childhoods.  But when I'm in my deepest, darkest place and I need them the most I cannot ask for more and they do not offer.  They have already given too much.  And I am alone.

Sometimes...

Sometimes, I wish that I wasn't always so eager to volunteer.

Sometimes, I want to grab my children, run, and never look back.

Sometimes, I wish this horrible disease would just stop.

Sometimes, the cruelty of this disease is overwhelming.

Sometimes, it is so sad that it is funny.

Sometimes, I want to go back to when this disease was just starting and I didn't think that it could get worse.

Sometimes, I wish my kids were able to remember their grandmother when she wasn't angry.

Sometimes, I would like to be the person that I thought I was.

Sometimes, I need to remember that we do what we have to do and that there is no other choice.  

Sometimes, I want to scream but I say nothing at all.

Sometimes, the guilt is the hardest burden of all.

Myths...

I thought I'd share some myths about Alzheimer's.

1)  There is a test to diagnose Alzheimer's. There is not... They basically rule out other possible causes of the symptoms.  The final diagnoses is made after death.  However, they are close to developing a blood test to diagnose it.

2)  You can stop the disease with medications.  Basically, the medications buy some time.  It can slow the symptoms but there is no cure.  Some patients do not even respond to the meds.

3)  Alzheimer's is not a fatal disease.  Because the disease usually occurs in the elderly they often die from other causes.  But, it is a progressive disease that can lead to death.

4)  Alzheimer's only affects the elderly.  9 out of 10 Alzheimer's patients are over the age of 65.  But, there are patients who are diagnosed as early as their 30s.

5)  Depression causes Alzheimer's.  Patients with Alzheimer's are often depressed but it is not a cause.

6)  Symptoms of Alzheimer's are reversible.  They are not.  Part of the reason for this misconception is that marketing for some drugs seem to claim remarkable results. 

7)  Aspartame, aluminum or silver tooth fillings cause the disease.  There is no proof to any of these claims.  When there is no real proof it is easy for rumors and speculation to spread.

8)  Annual flu shots can trigger Alzheimer's.  Simply not true.

9)  Just a little more effort will overcome Alzheimer's.  No amount of effort or work will stop this hideous disease.  Maintaining an active lifestyle, including physical and mental activities, can improve the quality of life but they do not stop the progression of the disease.

10)  Caregivers can do it alone.  They can not.  They need support and they need a break.

11)  Alzheimer's is the normal result of aging... Everyone will get it if they live long enough.  It is not.

My personal opinion, and it is just that, is that it is caused by the multitude of lifestyle and food choices that the last few generations have chosen.  Never before have we been bombarded by so many chemicals and "modified" food products.  Everything from trans-fats, to hormones, to non-stick pans and stain resistant clothes, to artificial sweeteners, to our dependency on our electronics and becoming couch potatoes.  I believe all of these things contribute directly or indirectly to this disease.  But, again, that just my opinion. 

If you are interested, this is my source:  http://bit.ly/OKNWxi