Still...

I have trouble sleeping. That's not true. I have trouble staying asleep. I think after all of these years I am still listening for Mom, still in protective mode. This morning I awoke early. It was still dark. I had only been asleep about 3 hours. I didn't fight it. I sat up, grabbed my phone and distracted myself until I was drowsy enough to try again. I made it. Blissful sleep.

It was one of those sleeps that you don't realize you fell asleep until you wake up surprised hours later. Except, this was different. I was dreaming. I was driving in my favorite car, my minivan, from the early days of Mom's illness. I was on my way to meet Mom at a mall, an outside mall. There were people and cars everywhere. I didn't want to go. I was frustrated, anxious. My hands were violently twisting on the steering wheel. As I turned into the parking lot, the top two-thirds of the steering wheel came off in my hands in a mangled, rubber mess. There was only a small piece of metal left. Suddenly, Mom was in the car with me, yelling at me angrily, "Just park!", over and over. I was panicking, just trying to control the car. Somehow, I was able to get into a parking space. Mom was pulling me out of the car. I could feel her agitation, her desperation. She was dragging me into the crowd. Suddenly, she turned around and pushed me to the ground, straddling me. Her venom filled face was inches from mine. Her hands were above me, held like claws, when she whispered, "I'm going to kill you!" I believed her, closed my eyes, and waited for her attack. When it didn't come, I opened my eyes and watched her lean down to kiss me.

I woke up crying, not because of her, but because the crowd never slowed, just walked around us as if we weren't there.

Just what I needed...

Somehow, tonight, I found a dear friend's blog. I didn't even know she had one. It was just filled with thoughts, fears, happenings, struggles, and, well, just life.

Since Mom's passing, I have avoided my blog. It was about Mom and our seemingly never ending journey through Alzheimer's. There is so much that I have tried to forget, ignore, and even bury. I am still dealing with anxiety and depression and when my therapist heard that I used to blog to survive, she suggested that I start writing again. The answer was a very strong, "No". I might have even muttered a weak, "Maybe".  Both answers were said to avoid the request. But, reading my friend's words reminded me that putting my thoughts down is exactly what I do need.

The entire time I was sharing my words, experiences and survival with all of you, I was told quite often that I was a hero and that God had special blessings for me. And, to be honest, I wanted to believe that was true. Oh, not the hero part, but that He was going to reward me somehow. I wanted so much for it to be true that I was focusing on the wrong things and didn't see His true blessings. All I saw were my failings in the life that I was being dealt, and finding everything, well, lacking. The poor health that keeps getting worse and adds to the anxiety. The government that was supposed to help me, simply because I have always played by the rules, and instead told me "NO" every time I've asked. The financial burden that I have been forced to watch my daughter bear. It all seams unfair and sure doesn't feel like anything special. And there is the problem.

I can't have faith and expect things in return, as if I have earned blessings. That is not how it works. 
I also cannot expect blessings based on the words of well-meaning friends. I need to focus my life on the gratitude of what I do have. The blessings are right in front of me. I might not be healthy in body and brain yet, but I am stepping in the right direction.

Tsunami of grief...

A few years ago, just a few months after Mom passed, I went to a mental health center for help with my depression. They asked me to go to a grief support group. I originally declined, but ended up going.

I was very uncomfortable in the group from the very beginning. Most of these people were raw with the pain of losing a loved one. I felt like a fraud. I wasn't grieving my mother, I was at peace with her passing. She had been gone a long time even if physically she was still there. I had already grieved. I was in the wrong place.  I wanted help with depression, not a grief that I was not feeling. I left the group.

A very wise friend pointed out that grief did not have to be about death. You can grieve many things: divorce, leaving a job, losing a way of life, the ending of a friendship, etc. It made sense. Not enough to allow me to feel comfortable in the group, but it clicked. Or so I thought.

Tonight her words came crashing down around me. There was no click, it was a huge tsunami. I am grieving. I am desolate with grief. I am so angry (a stage of grief). I have lost so much simply for making a decision that was, really, the only decision I could accept, to help my mother. I have lost an important sibling relationship that cannot be mended. I have lost the financial security that I spent my life building. I have lost my own home. I am a burden to my children. I have lost my health. I have lost myself. Yep, I'm angry.

The other stage that I am experiencing is depression. I am so deep that, at times, I understand why people feel they are emotionally drowning. When a tsunami hits, you usually drown. All of the things that I am angry about are not something that, right now, I have the power to change.

I am tired of trying.

July...

Every year at this time, Mom had melt-downs. Major melt-downs. They were bad and I dreaded the entire month.  Looking back, I'm guessing that she was having panic attacks. They had very real symptoms that could not be ignored. We often spent hours in the ER. 

July was a month of loss for Mom. As a young woman she lost her sister. Later, she lost her father. Then in 2001 she faced the horrible loss of her youngest son whose birthday was the 26th (one day after hers). Less than a year later she lost a second son the day before her birthday. Definitely a month of loss.

The month usually started with overall sadness and tears. As it progressed, she would have chest pains and headaches. I would find her rocking on the couch, holding her head, screaming that she had never felt pain this bad before. I would call 911 and off we would go. Nothing was ever diagnosed. She was always released a few hours later.

The strange part was that she always knew. When the Alzheimer's became so bad that she didn't know what day it was, much less the month, she knew. The tears would start. The panic set in. The symptoms weren't as severe, but she knew.

Here it is, Mom's birthday. I miss my my brothers terribly. They were the ones who brought so much laughter (and so much more) to my now splintered family. And, I can finally say that I miss my mom. The last few years of caring for her are becoming a fading memory. The harsh, sharp edges are softening. No more horrible days for her. July can't hurt her anymore.

July brings me peace.

The Octopus...

My experience as a caregiver ended almost 3 years ago, although it feels like yesterday. Yesterday, because I am still fighting my way out of the destruction. Alzheimer's disease does not care or give favor to anyone. If your family comes in contact with the disease, you become part of the destruction. I have come to think of it as an evil octopus, whom I call Al. Al tries to suck the life out of you. If you are quick enough to start your escape and begin to heal, there is another tentacle attaching itself to you.

There are eight arms on my metaphoric creature:  Faith, Finance, Self worth, Guilt, Anger, Relationships, Health, and Exhaustion. Each one is powerful by itself, but are more effective when they attack the victim in unison, or in pairs. A few are strike and go types of fighters. My faith was attacked, but is strong. My wounds caused by my guilt have mostly healed. Anger has left some healthy scar tissue of acceptance. I've accepted that the relationship that I lost will remain that way.

That leaves a battle with the remaining four- finance, health, self worth and exhaustion. It is so difficult to move ahead when I can't financially provide for my family, when my daughter is supporting us because I can't find a job. That, in turn, leads to a feeling of uselessness. My health is suffering. And here comes exhaustion. That damned Al just leaked all over me with his hidden power and it feels so dark.

I am just so tired of it all. I'm tired of pretending its all okay.

Am I being dramatic? Probably. But, I'm also being realistic. I don't want pity. This is just a continuation of the journey and I need to continue until the story is complete.

Al sucks.

In the trenches...

When I take Mom out, we tend to go to the same places... over and over.  The ladies at McDonald's know that Mom always begs for cookies.  The man at Walmart always nods at us.  Crystal at Burger King knows when Mom is having a bad day.  The repetition is good for Mom and it's easier to deal with Mom's meltdowns in these places.

Today we went to Target and had a "new" clerk check us out.  I say new because she didn't know us.  Mom did her usual varied routine.  Today she was angry with the woman for taking something that belonged to her.  I said my normal, "I'm sorry, she has Alzheimer's."  She smiled and said that she recognized the signs.  I told her that I was sorry that she did because that meant that she has dealt with it.  She said, "Dealing with it. My grandparents and mother."  She said, "But, your mom is still able to get out.  And it's 3 o'clock in the afternoon and you're still nice to her."  She got it!  She wasn't looking down her nose, knowing how to do it better.  She has been in the trenches and knows that despite our best intentions, we do lose our patience.

She made my day.

04/19/14

I am awake...

It's 3 am. I am awake.  I lie here in the dark with only the faintly glowing doorway into the hall showing the way.  20 years of being a mom has trained me to hear the slightest possibility of a noise.  But, I hear nothing but the clock ticking, the dog scratching from her bed, and the deep breathing of my sleeping children.  I am awake.  Waiting.

And there it is.

In the glow of the hall light I see it.  A thin, dark, spindly form.  Staggering, no, waddling?  It throws its weight side to side, almost like a duck.  One step towards the right.  One step towards the left.  Pause.  It's considering where it wants to strike.  It hears me.  It senses my being.  It moves towards me.  One step towards the right.  One step towards the left.  Pause.  It stares right at me.  I hold my breath.  It slowly raises a spindly hand towards me, straightens its too thin body, whirls around and quickly retreats to its den.

As I release my breath, I realize that had I not awakened, I would have missed the quiet approach of the intruder.  But, I was awake and I saw it all.

There will be little sleep tonight as I know that it is aware of me.  It is a matter of time before it returns.

I am awake. 

09/23/14

Holidays...

The holidays are over. The times that families seem to most miss their loved ones who have passed. It's hard to enjoy the many celebrations when there are empty chairs that will never be filled. I have been though many of those holidays.

This year was not one of them. For the first time in a decade, my children and I were able to have special times that were focused on something other than anger and frustrations. That's not true. There were periods of time in the past few years that weren't filled with stress. But, the times were those moments in time I like to bring up every now and again. 

I know there are people who grieve my mother's passing.  I understand and offer my condolences and prayers of comfort. 

I am not grieving. I am rejoicing. I will say it clearly and without shame, I am glad my mother died. I feel as if the world stopped sitting on my shoulders and crapping on me. Sorry, if that is too graphic, but it is true. That's the selfish part and I'm more than okay with that. 

But what makes it easy to be glad is to know that my mother has no more pain. She is no longer struggling with a brain that betrayed her. I was told over and over again during this journey that my mother was in there, that deep down she knew me and she knew what was happening. That though horrifies me. 

For the first time since Mom passed I realized that I don't remember her with anger and resentment. And that is the best gift of all.

3/29/16

And just that fast...

Mom has been up for 18 non-stop, agitated hours.  She just walked out into the living room and asked me, "Can I sit out here with you?"  I didn't answer because, to be honest, I have no answers left today.  I'm drained beyond words.  She responded with, "Aren't you going to talk to me?  Nevermind, I feel like I've taken everything from you today."  

She was there.  My mother was there for the time that it took her to say those words.  As she turned around to leave the room she said, "I haven't eaten in 3 days."  And just that fast, she was gone again.

9/28/14

Tick tock...

Some days the clock ticks by so very slowly.

Waiting.

Watching.

Peeking out the window.

Waiting.

They should have been here.

Where are they?

She's driving me crazy.

Where is the van?

Is that them?

The dog isn't barking.

It's not them.
Again.
They're late!

Watching.

Waiting.

They're here!

Let's go, Mom!

Thank you for coming!

Some days the clock clicks so very quickly.

Don't let her be here yet.

Waiting.

Watching.

Is that her?

Is she here already?

Don't be here yet. 

Please.

Peeking.

Waiting.

Just a little while longer.

Please.

Not yet.

It's too soon.

The dog is going crazy.
They're early!

She's here.

And the clock slows. Again.

09/14/14

X marks the spot...

Yesterday, I had to deposit a check that was made out to Mom.  Legally, I can sign it but I try to include her in the simple aspects of managing her life.  So, I turned to her with a pen and the check and asked her to endorse the back.  I made an X at the appropriate spot and asked her to sign it.  She stared and then printed an F... which is not part of her name.  I explained that she needed to sign her name "Andrea" at the X.  She nodded her head that she understood, then printed in very shaky capital letters A D D R E S S.  I told her that it looked good and then signed for her.

It surprised me.  She was able to do that less than a month ago.

She always played games with the letters and numbers on license plates. She would make words with the letters and poker hands with the numbers.  She still tries... but the logic isn't there anymore.

This disease has moved so slowly for Mom that we seem to notice each thing as it is stolen from her.  I can't help but wish that her journey could go faster. But that would be kindness. That isn't a word normally associated with Alzheimer's.


11/15/11

Thanksgiving...

There are certain days of the year that I wake with a certain reverence, similar to how you might feel walking into a religious sanctuary or during a funeral for a loved one.  I just know that the day is different from the rest.  It is special and should be respected.  One of those days, for me, is Thanksgiving.  It is traditionally a day of family, food, and fun.  But, more than that, it is a day of inner reflection and gratitude.

I feel such a deep respect for what the day represents that it always comes as a surprise to me when others don't feel it, that it is just another day, maybe with fun trimmings, but it's just a day.  And, I know that it is my expectations of the day being placed on others, that sets me up for disappointment.

It really was unrealistic of me to hope for a nice holiday with Mom.  For her, it truly was just another day.  And my unfulfilled expectations made the day seem even worse.  Mom was in a very negative mood.  She seemed to be looking for a fight.  No matter what was said, even when we agreed with her, she would turn it around on us.  We were in a state of constant turmoil.  We worked in shifts, one of us would "guard" Mom, keeping her out of trouble and as calm as possible, while the other two readied dinner.  It is hard to be reverent and full of gratitude while playing sentry to someone who is bitterly unhappy.

I am aware that most of my posts are about me and my feelings.  And I know, I truly know, that she cannot help herself.  I know that it is the disease that I hate.  I work hard to find things that I am grateful for today. But, they are there.

11/29/13

Different, but the same...

 I had a meeting with my insurance agent today and the talk turned to Mom and Alzheimer's.  And I met another person who has been in the trenches of the caregiver's brigade.

Everyone's story is different... and the same. This woman knew that her dad was "getting bad" but didn't realize the reality of it all until she received a call that he had tried to kill her mother.  Yep, that would be an eyeopener.  She made arrangements to take him home with her.  She figured that between her, her husband and her adult daughter (who is a nurse) it would be a piece of cake.  She said that it worked fine, as long as nobody needed any sleep.  I had to laugh at that comment.  Her journey as a caregiver ended less than a week after it began when her dad picked up and threw her dining room table through a plate glass window.

The details are always different but the basic story is the same.  There are behaviors that are universal.


05/13/13

True meaning of being a picky eater...

Mom has started this new thing with her food.  She just doesn't want most anything that she is given.  Okay, that's not new.  But, she has started pulling pieces off with her fingers.  Just little bits.  I'm sure that part is because she took out her dentures and hid them.  By the time I finally found them in the bottom of an old purse, she swears they aren't hers and refuses to wear them.   I think part of it is that she can't bite anything.

The new part is that each piece that she pulls off, she asks what she should do with it. She will pick the perimeter and continue around the edges until she has a circle left.  If we are lucky enough that she eats some of it, she then complains that someone is stealing her food.  She cries that it is disappearing. "Look at how small it is now! Who would take it from me like that?"   She refuses to eat throughout and will only occasionally pick a piece and actually put it in her mouth. 

On the rare occasions that she does eat most of it, she will always save a bite sized piece from the center and save it.  She will not eat all of anything.  There always has to be something left.  Always.

I think we are finally entering the final stage of this cruelty.  If it progresses as it has to this point, we should only have to deal with this for a couple of years.    

 

04/17/12

Just shoot me...

I just read another caregiver's blog entry that was written a few years ago. In it, the author is discussing that she has heard several caregivers express that if they are ever diagnosed with Alzheimer's that they will tell their children to "just shoot me".  The author was upset by this sentiment because she* felt that it lessened the value of her mother's life -that Alzheimer's patients, somehow, don't have a purpose. I understand what she's saying, I just think that there is another side to it.

I have never said those words, but I understand the feeling behind the words. I have told my girls that it's okay to put me in a home and just walk away if they choose. It's not that my life won't be of value or have purpose, all lives have purpose. I don't have to be with them to have value. I want them to be able to live their lives without the evilness of this disease taking away so much that they've already given once. It means that they have the freedom to make choices that are good for their lives, with no guilt. If they choose to stick with me through it all, that's fine too. I just want them to know that I recognize the sacrifices they have made and the compassion and selflessness they've already freely given. They've paid their dues. It's their choice.

Whether we say "just shoot me" or "send me away", I think we're actually saying, "I love you and you deserve to live your life. I don't expect you to make me your burden."




*I am assuming the caregiver is a woman simply because 2/3 of all Alzheimer's caregivers are female.

I Will...

It's been almost a year since I've been here (kind of) and almost 18 months since Mom found peace. I didn't think that I would need this blog anymore. I thought that the healing was going to be simple. I thought it would have progressed to the point of becoming just a scar that I notice now and then, not a gaping wound that doesn't seem to heal. I am here because I feel it's important to tell more of my journey through (and after) Alzheimer's.

I said "kind of" about not writing for almost a year.  I found a post that I wrote in November that I didn't publish. I just reread it and it broke my heart. I haven't progressed from that dark time. In fact, I have digressed. The wound has gotten deeper and angrier. 

 I have moved into such a dark place. I was placed on disability for 6 weeks because I am so severely depressed and anxious that I called out to work for 14 days straight due to panic attacks. No amount of bills that need to be paid (and there are a lot of those), the shame of failure, or the disappointment in myself could make me go.

I was released to return to work 4 days ago and only made it through the first day. I called in the next two. I HAVE to return to work tomorrow and am distraught and nauseated at the thought. 

I am receiving professional help in the way of therapy, medications, and classes to relieve stress and rebuild my self-esteem. I'm learning how to talk to myself without calling myself horrible names (a habit a learned while being isolated with Mom). I am researching and finding that many caregivers have a difficult time adjusting and moving on from the stress and trauma.

I know I will get through this. I KNOW I WILL GET THROUGH THIS!

P.S.
I published the post from November if you choose to read it. "It is so dark..."

It is so dark...

(Written November 12, 2016)

The bright screen in the middle of the dark night calls me once again.

I am consumed with dark thoughts and feelings of hopelessness. I want to blame Alzheimer's but this time I'm afraid the evil thief is only partially to blame. The rest falls to me.

I haven't told many people, but I found a job several months back. After almost a year of searching, applying and hearing nothing, any job is a blessing. I hate my job. I hate the hours. I hate what I do. I hate it. The first 3 months were Hell. I became physically ill each time I thought of clocking in for the day. I called in sick too much. For the first time in my life, I was a bad employee. When I was at work I tried and gave it my all. But, I hated going to work. And my body helped me find reasons not to go.

And six months into it, I still hate going to this job. Even as I work through it I am going further and further into debt. I am so very ashamed and so very unhappy. Today I thought about death. My death specifically. I am having some painful, but not life threatening, medical problems, but my mind goes to the fact that I could better financially provide for my family by dying then by showing up to a job that makes me so very unhappy.

I am not suicidal. I haven't considered ways to "do it". But, I am afraid that I could find my way there. I love my daughters more than anything in this world. I want to help them and be there for them but I can't do it if I can't pull myself up and out of this darkness.

I have no one to talk to who isn't involved and invested in my condition. No money to pay someone to listen to me. I sit here in the dark, alone, weeping silently while the rest of the house sleeps. I have become the burden I so very much don't want to be. And I can't stop it from happening.

I want my life back. I want my confidence. I want my laughter. I want my health- mental and physical- and I want to be able to pay my own bills and my own way. 57 years old and my daughter is supporting me. I want to be the example that my girls can be proud of. I am ashamed.

I miss me so much.

There but for the Grace of God go I...

Sometimes, as with this blog, I don't choose to write, writing chooses me. This is one of those times.

Lately, I've seen a lot of things go by on Facebook talking about welfare and food stamp recipients.
The comments usually paint the recipients of those programs with a biased brush and a lot of stereotypes. -They are lazy. -They are moochers who choose not to work -They are baby making machines. -They are all unproductive members of society who walk out of the store with steaks, lobster, and champagne just to get into the latest model of a luxury SUV.

I read comments like:  "I've worked all of my life and pay into a system that feeds people who have never worked a day in their lives" "They should make them work for the handouts even if it is shoveling poop." "They're all deadbeats milking the system."

So many judgments, and in my opinion, so little tolerance of lives that they, hopefully, will never experience. While I know that there are welfare recipients who have made careers from milking the system, that is not usually the case. What about the disabled? Or our military families who are near or below poverty level? Our veterans? The elderly? Do none of these groups deserve compassion?

Let me put just one face on this issue.

If you've been a regular reader of this blog, you know that taking care of Mom didn't just cause emotional trauma to my family. It also destroyed my financial security. I used all of my savings trying to support my mother and my family. When that ran out, I stopped paying non-essential bills. My great credit was torn to pieces. All financial support to a caregiver stops cold when the patient passes. I am now an unemployed 57 year old woman who wants to work but can't find a job.

I haven't had any income in 6 months. I am saved from being one of  "deadbeats" by my 21 year old daughter who supports this family. She works 50+ hours a week to keep us afloat. Make no mistake, if my daughter wasn't the person that she is, I would be standing in line with my hand out, judgment from society be damned.

Reading these things hits a nerve. They hurt me knowing that I am not the only person whose circumstances have caused a situation that is not of their doing. But, reading the harsh intolerance of those making comments makes me thankful that they have a life that hasn't fallen apart through no fault of their own.

People say, "Put them to work!"  I say, "Yes, please, hand me a shovel."





 . 

On this day...

It's been a long while since I've visited this page. Well, at least, in the role of writer.

Each day on Facebook I have been reading the "On This Day" feature that, you guessed it, shares what I was doing on this day in the past 4 years that I've been writing this blog. More often than not it shares a link to this page. I read each post almost as if I am a new reader to the blog. I often don't remember the specific episode that spurred the entry, sometimes the memory is crystal clear.

The interesting part of it all is that while I feel the pain, stress, frustrations, and sometimes the humor of the situation, I no longer feel the anger. And I was so very, very angry. It is liberating to know that the anger is no longer consuming me. In fact, if someone were to ask me today to describe what we endured, words would fail me.

I remember being very young and asking my mom why women have more than one child when childbirth is so painful. Her answer was twofold. She said that the joy of a child for a lifetime far outweighs the pain of what is really just a brief moment of time. She then said that the Good Lord lessens the memory of pain until it seams less important. In other words, we heal.

I have a long way to go to be healed. Scratch that. I will never be completely healed. I believe there will always be scars that I worry at and pain that will, hopefully, diminish with time. But, for now I'm calling this a step in the right direction.

Oh, and if I continue with the childbirth analogy? Once is enough for me.

May they rest in peace...

After my last blog entry, a dear friend asked what was the weirdest thing that I found while cleaning/purging/screaming. I had some items that could be considered, but nothing that was the weirdest.

I now have another entry into the contest. I finally found a baggy of lids that I have been wondering about for years. They are the ones that Mom took off of every jar in the kitchen one year. I knew she hadn't thrown them away- that was apparently against her beliefs.

While it probably isn't the weirdest, it does bring me closure- and that's something those jars went to their graves without.