Mirror, Mirror on the wall

I recently read an article in Dementia Today that describe the brain's inability to recognize a person's own image in the mirror. It immediately reminded me of an incident I experienced with Mom in May 2011.

We had gone shopping at Walmart. I was buying walking shoes for our upcoming Vegas trip. While I was making my selection, I instructed Mom to sit on a nearby bench while she waited for me. She sat on a shoe bench in the shoe department. At the bench there was a mirror directly behind her against the wall. At first, I didn't pay much attention to her until I realized she appeared to be having a conversation with someone.

I turned around to look. Suddenly, my heart skipped a beat, I stopped in my tracks to observe Mom. I immediately notice there was nobody else around us, just Mom and me. I stood there in utter silence as I listened to Mom speak. I was completely stunned when I realized that Mom was having a conversation with her own image in the mirror. She wasn't talking to herself per se, she honestly believed that another person was sitting directly behind her.

She was actually carrying a conversation with her imaginery friend. I heard her chatting about certain life events, such as where she went to high school, etc. She would actually put her ear up to the mirror to listen closer to the make-believe person next to her. Suddenly, Mom noticed tht her imaginary friend had matching rings which were identical to the ones Mom was wearing! Her mouth dropped and her eyes got wide as she held her hand up to show the imaginary friend her rings. Mom was totally surprise that their rings matched.

My instincts told me to pull my cellphone camera from my purse to snap Mom's picture as she talked to her imaginary friend. When she noticed that I was taking pictures, she paused a moment from talking to actually pose with her new friend in the mirror. Next thing that happened was Mom noticed the imaginary friend's other hand. They had the same rings! Now, Mom was astonished that both hands had the same matching rings as hers. Her expression said it all.

I just snapped her picture as she holds up her hand to reflect the matching rings. I debated whether I should try to correct Mom or not. I chose not to.  I didn't want to embarrass Mom by pointing out that her friend in the mirror was actually herself. I let her have her imaginary conversation as though it was a real person just having a social conversation. She even politely introduced me to her new friend. As I told Mom it was time to go, she said a quick goodbye to her friend and together we left to the checkout lane.

By now, my mind is racing faster than the Indy 500. I kept replaying the imagines of this event I just witnessed. I had taken three (3) quick pictures to capture the moment. As I looked upon these pictures, I struggled with the imagines in my mind. Replaying the conversation in my head. It all seemed surreal to me. Over and over the event replayed in my mind. I was confused by what I just witnessed and I felt an overwhelming sadness inside me.  My own mother didn't recognize her own image in the mirror.

It has been said that pictures tell a thousand words. These pictures show the reality of Mom's declining mental capacity. I was like watching the saddest show on earth. It was the most heartbreaking moment that I have ever experienced in my life (aside from the death of my Dad). I could barely make sense of it at all.  But the reality of the moment allowed me to clearly see that my sweet Mom was a completely different person inside now. My eyes would never see her in the same perspective as before. Besides the enourmous love I have for her, I knew that I had to be her protector now. Mom was defenseless to her own self. Dementia is one of the worse diseases in this world. It is horrific how a beautiful, intelligent and independent woman has become feeble minded by this horrible, horrible disease. The grief that I felt inside is so overwhelming as reality sets in. I know that Mom's mind is slowly being robbed. She is the victim, dementia is the criminal. 

Lord hear my prayers

Dear Lord,

You know me better than I know myself. Lately, I have been looking at pictures of Mom from years past. Years filled with such wonderful and happy memories that passed by so quickly. One thing stands out in my mind and I can't help thinking how much she has changed in the last 3 years. Not just in appearance but her personality too. Don't misunderstand me, Lord, I am glad that Mom is alive, strong and physically healthy. But, sometimes, I can't help missing my REAL Mom, the Mom before this evil, dreadful disease of dementia, that has taken over her mind.

There are so many words I could use to describe my Mom but none of these words would justify the beautiful person she truly is.  What I can say, Lord, is that you blessed my brother and I with such a wonderful mother, we are extremely grateful beyond words. Thank you for selecting this gracious woman to be our Mom. Growing up, she nurtured us with lots of tender loving care, sprinkled in with understanding, patience and inspiration, she provided guidance to us so we would become the strong, independent, mature adults we are today.  We were so lucky! My family was very loving and affectionate. We had the space to voice our opinions through open discussions and debates. We always forgave each other for any hurt feelings. Mom, especially, could never hold a grudge longer than an hour. But what I will always remember the most about Mom is that she taught us about Unconditional Love.  Yes, we are so very lucky! Although, we do not know what her future holds, one thing is for certain, we love her dearly and we want only the best for her well being and happiness.

Please, Dear Lord, guide us with your divine powers to be kind, loving and more patient than ever before. Help us to understand that Mom does not control her thoughts, words or actions. We know without a doubt that Mom loves us immensely. Please give us many more days of joy and happiness with her. Let Mom feel how much she is loved. I pray to you, Dear Lord, please do not let Mom forget who we are, even as all else is forgotten in her mind, please, let her remember her children to the very end. And Lord, one last request, when you decide to take her home to your kingdom in heaven, please, allow her to travel peacefully with you, without any prolong suffering or pain. Thank you for answering my prayers Lord.

I ask this in the name of your son Jesus. In the name of Our Father, his Son & the Holy Spirit. Amen.

Family isn't always blood-related

An upset stomach has me awake in the middle of the night. Sometimes, I have so many thoughts running through my mind, I don't always focus. But this morning, one particular thought stands out in my head. More of an observation, than anything else.

Have you ever notice when a person gets sick, others will pray for them, call them, or bring them food? Each of these are very nice things to do for people to help the individual get better. Or when a person passes away, family comes together to share their condolences with the grieving family. This shows how much the deceased person and her family are loved.

But what is bothering today, I am speaking specifically about my mother, is that when a person like Mom, has a serious medical condition, like Dementia, that NOT many people (family) offer do anything for her.  Such as going to visit or taking her out to eat or including her in other family activities on a regular basis.

Since Mom's dementia was diagnosed last year, there have been noticeable changes in her memory and behavior. My brother and I are her primary caregivers. We are a team that is dedicated to caring for Mom. Our sole purpose is to see that she is happy in life. We have had to alter our own life so that we may share in her care. It is a very difficult balance and requires coordination of our schedules. We have to be flexible and learn as we go through this journey with her.

Mom comes from a family of 11 children (7 girls, 4 boys).  Recently, my mother lost her first sibling, a sister who was 1 1/2 years older than her. Mom was very sadden by her loss.   Fortunately, Mom went to visit her at her deathbed and told her, I will love you always. Luckily, Mom has accepted her sister's death and realizes that her sister is no longer suffering on this earth. Initially, I was worried whether Mom would remember this event  or not. So far she has and it seems to be embedded in her mind now.

At the funeral, mother sat quietly with her other siblings and accepted hugs from people offering their sympathy for the loss of their sister. Sometimes, when Mom reaches out to hug or kiss a person, she tends to touch their face. I couldn't help notice how one particular relative quickly grabbed her hand so that Mom would not touch their face. Up till now, I had never witness an adult actually reject her touch. However, this rejection actually bothered me when I saw it happen. Maybe because it wasn't a slow suddle motion  but an actual  deliberate reaction to avoid her touch.  I did not  mention it to Mom. Instead, I made a mental note about the incident to myself. Luckily, Mom really didn't notice or pay much attention so it didn't ever bothered her. However, I got the impression based on this person's past behavior that they don't like to be around my mother much anymore. Recently,  I've notice them leaving the room whenever she comes around.

 I often tell Mom not to touch children or people in general because they may not like it. When she meets a stranger's child, she usually will ask permission from the parent if she may touch their child. She is superstitious about giving a child "ojos". So far, all parents have been kind to her and allowed their child to be touch.

Mom has wonderful social skills and loves people in general. She loves her siblings tremendously, but hardly sees them. I once asked one of my aunts (Mom's sister) if she would ask her brothers and sisters to spend a few hours a week with Mom. I was surprised when she responded, "that is something you need to ask". Wow, It's funny things changed quickly. How this same aunt had initially offered numerous of times to take Mom to her doctor's appointments or help in any other ways. But after 2 doctor visits, she pretty much has said, "that you and Eric need to take your Mom". So, I've quit asking. I've realized quickly that Eric & I are on our own now. 

My husband had told me about a similar story when his father had cancer and all his family would make offers to take him to the doctor or help out with transportation issues. But it didn't take long to recognize when the family no longer wants to be bothered with such problems. It didn't matter that he had taken family leave from the Marine Corp to be close to his father or that he did not own a car. He actually warned me that initially everyone will offer to help but when it comes down to it, nobody ever will. He was truly right.

However, I am fortunate to have one relative from my father's family who love and adore my mother so very much, my beloved Aunt Minnie & Uncle Roy. They have extended offers to have Mom visit more regularly on numerous occasions. I am so grateful that they have a solid and genuine relationship with Mom. They have expressed their desire to stay involved in my Mom's life to the very end.

Often, I think to myself, Mom's memory is fading and if anybody wants to be remembered by her, I recommend they make a conscientious effort to call  and visit her. Otherwise, if they do not, it is very likely that Mom will not remember them. Their memory will be forever lost. Once this happens, I can never change the final outcome.

I am trying to be proactive and I have started searching through caregiver resources to find an assisted living facility. As much as I hate the thought, I have to be realistic. I have been told that as Mom's condition worsens, that she will most likely need the care assisted living provides. For now, I am an optimist, I believe that my brother and I are the best caregivers for Mom. She nurtured us as children, it's our time to nurture her.   I am considering to join an Alzheimer's support group and my sweet Aunt Minnie (Dad's side) has offered to come with me. Isn't it funny, that those that care the most are not always related by blood. Suddenly, I understand the meaning "Family isn't always blood related."

Ooh, baby, it's a wild world

La la la la la la
Now, that I've lost everthing to you.
You say you wanna start something new
And it's breaking my heart you're leaving, baby, I'm grieving
But if you wanna leave, take good care.
Hope you have a lot of nice things to wear
But then a lot of nice things turn bad out there.

Chorus:
Ooh, baby, baby, it's a wild world
It's hard to get by just upon a smile
Ooh baby, baby it's a wild world
I'll always remember you like a child, girl.

You know I've seen alot of what the world can do
And it's breaking my heart in two
Because I never wanna see you sad, girl,
Don't be a bad girl
But if you wanna leave, take good care
Hope you make a lot of nice friends out there
But just remember there's a lot bad and beware, beware

Chorus: Repeat

Just the other day, I heard this song by Cat Stevens, "Wild World" and it brought a smile to my face and tears to my eyes. When I was a teenage, my mother once told me how this song reminded her of me. I used to think it was written especially for me. She used to tell me NOT to be in a hurry to grow up and life isn't as easy as it seems.

I have always like this song but I never gave much thought to the lyrics until years later. Now when I hear this song, it brings me mixed emotions. I think back to my carefree teenage years that I never thought would end. How simple life was. How fortunate I was to have such wonderful parents. I know now that I didn't show enough appreciation to my parents when I was a teenager. I know this now because I do not feel very appreciate by my own children at times. I understand the meaning of these lyrics today and I am glad that Mom took time to shared her true thoughts and feelings with me during a wonderful mother and daughter moment. She doesn't remember our past conversation from years ago, but I will always remember. I love my little lady.

Heart of Stone

I feel like I have a heart of stone when I tell my mother that "I don't care how many cigarettes you smoke." But truth be told, I do care. However, I know she doesn't realize how bad smoking is to her health. Mom's mind has gone back to a different time in her past life when she used to smoke with my father.

They didn't care how much they smoked, nor did they care if they smoked inside their house. They didn't care that their children were exposed to second-hand smoke or that we didn't like them smoking at all. No, they just didn't care. Bottom line, they were addicted to tobacco. Period. Of course, this is back in my youth when Eric didn't smoke unlike he does today.

So when I say, "I don't care", I really do. However, I can NOT blame myself for what Mom does to her own body. I will not be blamed for her actions. It is not my fault. If Mom was in the right mindset, she would not smoke today. She would have the willpower to kick the bad habit. But her memory loss has caused Mom to be a different person, it's changed her personality to where she just doesn't care anymore. She doesn't care that I hate her to smoke. She doesn't care what I think at all. Besides she reminds me that I am not the boss of her and that she only smokes 5 cigarettes a day. BULLSHIT. This I know is not true, she just doesn't remember how much she really smokes. She only knows when she is out of cigarettes.

She tried to justify her smoking by saying, "I'm smoking this for Edward." Oh, yeah, like that is so sweet! I am being vicious when I say this!!! Does it not matter that my father died of a massive heart attack!. He was only 58 years old. He smoked his whole life. Ever since he was a kid in grade school. From early morning, a cigarette was the first thing in his mouth, to late night when it was the last thing he did before going to bed. I hate smoking! It is not glamorous to me. It killed my father. Smoking is a selfish act.

Now, it totally infuriates me that Mom will not stop smoking. There, I've said it. I really do care but I don't want to. It's too depressing to care so much! It makes me sad and unhappy that I have little control over this situation.

So what do I do when she tells me that she needs to buy more cigarettes? I take her to Walmart to buy a carton for $70 bucks. What a waste of money? It's a neverending cycle, my arguments with Mom to quit smoking go round and round in a circle.

Angels in disguise

Today, Mom had an appointment to have an MRI done. I have been anxious for this test because it has taken Mom's HMO insurance three weeks to finally get her pre-authorization approved. Sometimes, it is difficult to take Mom to her appointments, she usually gets upset with me for scheduling them without her prior knowledge. Of course, Mom loves to proclaim to everyone she crosses path with in waiting room, doctor's office, or clinic, that she is fine and nothing hurts. She gets loud and abrasive as she becomes agitated knowing I've scheduled an appointment without her consent. It has gotten to the point that I just ignore her behavior and quietly continue completing her insurance forms. Mom's hands are crippled with arthritis so she has difficulty signing her name. She detest having to sign more than one form, which is usually the case at any doctor's visit.

When Mom was called to the back to prepare for her MRI test, I went along to help her disrobe. Again, she complained about having to disrobe entirely as well as taking off her jewelry. I patiently explained it is common procedure. As Mom has her test, I wait in the waiting room.

I make small chat with the receptionist regarding USAA and Mom's condition. She said that her boyfriend just got hired at USAA. She also told me that my mom is very cute and I am very patient with her.  A security officer comes into the room. His name is J. Lopez and we make small conversation, mostly about USAA. His son works there too. After her test, I return to the back to assist her in getting dress. She is excited to leave and ready to go to dinner.

As we exit the office, the security officer approaches my mom and reaches out to greet her with a hug and kiss on the cheek. He tells her that he will be praying for her and blessed her several times. He tells mother in Spanglish to "be nice to your daughter because she has a good heart, she is a good daughter for taking care of you and she loves you very much." Mom and I thanked him for his kind words.

I do not think this man knew how he truly touched my heart with his loving words. Not only did his words have true meaning to me but they brought tears to my eyes. This man knew without me ever saying a word to him about my mom's condition. I truly believe that all things happen for a reason. I believe God sent an angel in disguise to comfort me today, just when I needed it most.

Thank you Lord!

Love & Grief

Yesterday, I missed 6 phone calls from Mom while I was working. I debated with myself, do I return her call or not. I was still upset with her from the night before when she acted irrational and childish. In my head, I reasoned why I should not return her phone calls. But in my heart, I knew that I had too. When she answered the phone, she was in a happy mood. She had already forgotten about her bad behavior from the previous night. I went to pick her up to take her to the grocery store, I could not help looking at her and knowingly hold a grudge against her, no matter how hard I try. I love my little lady too much.

The funny thing about love is that you can love someone with all your heart and at the same time you might not like them. I guess you can say these days Mom and I have a love/hate relationship. It doesn't matter that the last 30 years we have had a wonderful adult relationship. Those days seem long gone and have disappeared. Today, our relationship seems to have reverted back to my teenage years, but only with our roles reversed, where I am the parent and she is the teenager.

Life is strange indeed. How can I hold a grudge against my Mom? I didn't want to see or talk to her but yet when I am apart from her, I have "caregiver anxiety" when I am not with her. It is difficult enough that her short-term memory is poor and that she repeats her questions over and over. But it is even more difficult that she is stubborn and uncooperative too. Topple that with complaints, demands and insults, then I become a bundle of nerves with very little patience. Sometimes I feel that the stress of our relationship is becoming too destructive and that I can't take another day with her again. I try not to take it personal, but it leaves me with mixed emotions. I have to remind myself that my real Mom would never say this words to me. I realize that she cannot control herself, it is her disease that causes her misbehavior. But frequent episodes like this can wear me out. And the more frequently it occurs, the less tolerant I am.  It is easy to feel overwhelmed from the duties of a caregiver. The reality of life as it is today, is really difficult to understand and accept. A person with an incurable disease can become angry and irritated when things do not go their way. It seems like she remembers her feelings longer than she remembers the situation that caused the feelings. She is insensitive to others feelings, which creates tension in my household. When she becomes upset over something, she will nag and nag and nag and nag, did I mention nag, me like crazy. She becomes fixated on the situation and will not let it go. Explaining and trying to reason with her does not help. If she doesn't get her way, she is not happy. When she is not happy, I am not happy. When I am not happy, nobody is happy. You get the cycle. It is neverending and destructive at the same time.

I have found that as her illness progresses and her personality changes, I am experiencing grief. I am griefing over the lost of my relationship with my Mom. I am griefing over the "way she used to be." I find myself feeling very sad and sometimes discouraged. Sometimes, little thing make me cry often. I feel the tearfulness and sadness is welling up inside me. My experience with grief has only been assoicated with death. However, grief associated with a chronic illness like Mom's seems to go on and on. I guess I am griefing over losing the wonderful qualities of Mom that I miss so much and I know that I will never see them again.