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.

My Little Lady

After returning from a one week vacation in Las Vegas, my cousin, Cathy asked me, how was it being with her 24/7? I knew what she meant. She wanted to know how I handled being the caregiver for my mother for a full week.  I had to answer her honestly, I said it was tough. And I wasn't kidding either. When I made the decision to take Mom to Vegas, I knew it wouldn't be easy.  However, I just had no idea that it would be so hard, so much harder than caring for children.

You see, Mom has dementia, between stage 2-3. Her level is considered to be moderate.  On May 4, 2011, her neurologist, Dr. Diana Solomon, advised me after Mom's evaluation that her condition will most likely turn into Alzheimer's Disease. Yes, you read right, Alzheimer's Disease. I have had to practice saying this out loud to myself. I have had to get comfortable with knowing that Mom has an incurable condition that is slowly robbing her of precious memories. Do you know how many times I constantly ask my Mom, will she ever forget me? She always smiles and says Of course not, you are my first born child. My only daughter. A mother never forgets their children. I smile and say, I hope not.

You may ask why did I take Mom to Vegas. Well, I will tell you why. Mom loves to travel. She and my father loved to take vacations and drive my brother, Eric and I to different states, so that we may see new territory and explore new areas. As a kid, I was pretty proud of the fact that I had visited over 25 states before I was 18 years old. Growing up, I lived in several different places, like Washington DC, Florida, Kentucky and of course, Texas.  As I've gradually accepted Mom's diminishing mental condition, I decided that I want to make her life happy while I still can, while she can enjoy it. This is the reason, why I took her to Vegas. She loves to travel and it makes her happy.

It didn't matter that every day is a new day for Mom. It didn't matter that the events from the day before were already lost and forgotten in her mind. Mom doesn't remember that she was taken to the emergency room at the local hospital on two separate occasions while in Vegas. She doesn't remember fainting in my arms outside Treasure Island's pirate show. Even though, she was very appreciative of the EMS techs, nurses and me for helping her. She vaguely recalls the incident overall. Nor can she recall when she fell and hit her head at another casino that required 9 staples to close the gash in the back of her head. She never saw my bloody hands as I quickly responded to apply pressure to her open wound. She doesn't recall any of these events.

Mom now lives in a moment to moment world. She is happy and oblivious of her forgetfulness. She is in complete denial of her condition. She believes that her memory problems are due to aging. Every day she proclaims that she is wonderful and that nothing hurts her. I can only smile and say that I am glad nothing hurts.

Mom is unaware that she cannot be left alone anymore. It is so sad since she has been such a strong and independent woman for so many years. She has forgotten  how to balance her checkbook or write her bills anymore. She is not interested in any domestic chores either. She doesn't see the messy bathroom, closets and fridge in the same way I see them. This change is a far cry from the tidy and uncluttered home she used to keep.  

She doesn't understand that she cannot drive anymore. She has no idea how hard it was for me to write the DPS office to ask them to revoke her drivers license. While I am waiting for their response, I have managed to keep her from driving her car with the excuse that I need to borrow it for work. She complains how long I have borrowed it. Every time she ask me when I will return it, I lie and tell her in 2 days.  Since she doesn't keep track of the days of the week anymore, my 2 day excuse has worked for over 2 months now.  

Mom has lossed the sense of time. I read that a person with dementia loses the uncanny ability normal individuals have for judging the passage of time. She repeatedly asks me what time it is, even when she is wearing a watch. I realize that her behavior is not deliberate but I can honestly say it is very irritating. It is the result of the loss of brain function. As the disease progresses, Mom will be  unable to remember what I tell her even for a minute. I already repeat myself and remind her over and over.

My biggest challenge thus far has been her changing personality. Mom tends to overreact at certain situations, such as when her security alarm goes off and after it has been reset, she complains that she was never advised that it was installed, even though she was home at the time of installation. On the bright side, her short memory can work to my advantage: she quickly forgets the problem. She has a combativeness side to her too especially when discussing issues such as: stop driving, assisted living and quit smoking. She can become very agitated with me. She accuses me of being bossy and tells me that I am not the boss of her. Sometimes her dementia makes it difficult for her to communicate properly. She has difficulty communicating her thoughts or chosing the proper word.

This is just the mid-way of a long, long journey ahead. Sometimes Mom has her good days and her bad days. On her good days, I love when I recognize my real mom from within her. This is the woman I miss so much. I used to wonder what was hardest in life: losing a parent suddenly or losing one slowly. I have concluded that both are difficult no matter what the situation.