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Why this blog, why now

This is the post excerpt.

I am not here for followers, or fame.  I am writing here to put down my feelings of grief, sadness, hope, and frustrations in my life as a daughter who helps her father take care of my mother who has dementia and cancer.  My life right now is so upside down with fear and emotions that I need to let it go.  Some will have dementia days, some will have cancer days, some will have travel days as my husband and I have our business, and other days may be me just rambling on to figure out my next step in life.

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Taking the good with the bad

Mom has been doing pretty well lately. I’m blessed to have her in enjoy the little things in life. This brings the title of this post today.

This weekend, I was at a baby shower and there was a little book of inspirational quotes and we signed it with our own words of advice.  Mine was to take the good with the bad in life.  Things here have been pretty interesting to say the least. But today my mom got to enjoy the little thing in my husband and I’s life.. our son got his learner’s permit for driving today. She has enjoyed the huge smile on his face all day. I’m so proud of him. And I’m so blessed to see her enjoy this moment that I didn’t know if she would see.  That smile is precious. 

We have to sometimes take a step back in our own caregiving world to see the world around us. In my case, between the pain I’ve been having (suffer from chronic pain), the stress that has been unreal lately, and just general life, I had to take a step back and realize what was important today.  My son is important and we don’t get out like we use too. Today, I made myself enjoy this moment. 

Take this to heart.  Never feel guilty for enjoying your life. The person you are taking care of doesn’t want you to suffer. I know that sometimes it’s impossible to get away, but that is when you ask for help. Trust me, go enjoy your life. Even if it’s just for a few moments. 

The reality of dementia

Today is a sad day in country music. The talented Glen Campbell passed away from a long battle with Alzheimer’s. I grew up listening to him with my dad. His death has hit me a bit harder than any other star’s death. 

It’s the realization that my mom will eventually subcom to this horrible disease. My mom is on the losing end of a long battle and his death just reinforced it. 

Dementia and Alzheimer’s does not know age, sex, race, talent, or intelligence. It robs everyone the same. My first band director I ever had, the teacher that had the confidence in me to be able to play the clarinet, passed away from Alzheimer’s and Parkinson’s. He was an amazing teacher, mentor, and all around person. 

I know the battle that each person has with this horrible disease is all a bit different, but yet, all the same. The tears that are cried when the person who should know them doesn’t. The frustration of trying to get them to do something that is needed. The sadness that who they are on the inside is dying. The look on their face when they know what they are trying to say won’t come out because they don’t know how to articulate it. 

I know his wife and family are saddened by his death, but hopefully they are rejoicing at the fact that he has been made whole again. RIP Glen Campbell, you were an amazing talent. I leave you with these, a couple of my favorites. 

Rhinestone Cowboy
I’m Going to Miss You

Faith Family Friends

There have been days lately that I have spiraled into a deep depression. There have been days that I have done things that would be considered a dangerous behavior. But there have been three constants in my life.. faith, family, friends. 

Faith

I have always been a believer in God. I grew up in a church, but no longer go because I began to question that church. But, I have always had my faith. I also believe in the power of prayer. 

In this journey, I have probably prayed more in the last couple of years than I have in my life. I ask him to help me keep my head above water, for my mom not to be in pain, for the strength to just go on. Remember the anticipatory grief, yeah, that is the main time I ask for him to help me keep going. But then there are days I beg him to take Mom. Not so much for me, but because I know she is suffering and with her dementia, she can’t articulate what she is feeling. Last week she said she wanted to go home. But yet, after talking to her more, she I sense is feeling something changing but can’t say what it is but wanted to go back to a time before she got sick.  This is when I prayed probably the hardest prayer. Help dad and I keep going, and to please not let her be in pain. 

There is another side to the faith though. I have felt the difference in days on how I feel because someone says, I’m praying for you.  I really do feel it some days and I know God is working on me to get through the next big hurdle. On Facebook, when I say prayers, I really do have a prayer for them. I mean what I say. 

Family

Family has been iffy. Mom’s side of the family is dwindling down quite a bit. I have an uncle, a cousin, and a great aunt and uncle that are immediate family then they have their families. My uncle, whom I found after 20 plus years, has told me how much it means to him for me to be here with mom. My cousin, she has her own things going but has been a huge support for me. I know I can call her any time and know that I am not alone. My dad’s side of the family are also always there via Facebook. I have a group chat for them to keep them updated on mom. But honestly, after my parents are both gone, I have no one here holding me back. Yes, I have friends, but my cousin is the only one here local that is family, but still, not holding me here. Then…. Well then there are another set of cousins that seem not to care at all. I’m done trying with them. They don’t want to be, fine with me. It’s their loss, not mine. They haven’t cared since my grandmother passed away.. a few months before my uncle disappeared. Blood doesn’t make you family, it’s who is there when needed.

I’m shouldn’t have to mention, but my amazing husband of 18 years and almost 16 year old son have been my rock. They know when I am down, when I just can’t go anymore and somehow, they keep me from giving up. 

Friends

Over the last few weeks I lost two friends. One I had to kick out because he was causing me more stress than I needed, the other took himself out of the picture.  I was about to kick him out, but circumstances were in place. He didn’t get it. He didn’t get how bad my life is. 

But then there are others.  The ones who get it. One of my best friends, her mom has heart issues and next heart episode could kill her. She and I have been through so much together and she is probably my biggest supporter other than my family. I have another one who I have been friends with since kindergarten.. the rare long term friendships that just don’t go away. Even when contact is lost for a few years. If you look at my Facebook friends, you will see only people who care about me and my family. I don’t accept anything less. 

I don’t know where I would be without any of these three. I also know they are all connected. God put these people in my life for a reason. There’s a saying I live by.

“God never gives you more than you can handle. And when he does, it’s a test.” This one I feel is probably the truest thing ever. I really don’t know what this test could be for. I’m almost scared to find out. 

Anticipatory Grief

There is grief from the sudden loss of someone.. suicide, murder, accident, heart attack, etc. There is grief from someone dying who is ill from cancer or any long term illness.  Then there is the worst grief of them all.  Anticipatory grief.  It is mainly suffered by caregivers.

I have suffered this once before with my father in law.  I quit my job, along with my husband, moved in with him.  My then 2 yr old son, my husband, and I.  He had throat cancer and at the time we moved in, he hadn’t been diagnosed yet, but he knew something was up and was preparing for the worst.  Fast forward, he had terminal throat cancer.  He had been through 6 weeks of daily radiation treatments, surgery, a round of chemo, and all that went to waste.  Nov. 14, 2004 was a day I will never forget.  My son turned 3 that day.  Happy birthday son, your grandpa is dying.

The following 4 months were the longest 4 months of my life.  I helped him change clothes, do his feeding tube, make sure he was comfortable all around.  It got to the point when he was bed ridden, we knew he wasn’t going to last long.  The hospice nurse that we had (seriously, those guys are amazing) made sure we were taken care of.  But nothing ever prepared us for the grief that we were going through.  Anticipatory grief is a funny thing.  Its not your normal grief.  You cry because you are worn out.  You are so emotionally and mentally tired, much less physically.  You grieve over the loss of your freedom, you grieve over the pain that they are dealing with, and you don’t know when its going to end.

I started dealing with this ugly monster again when mom was diagnosed with dementia.  There is nothing worse than watching someone you love, who has been your rock, your best friend, your shopping partner die and yet they are still there.  I knew what was to come being that I had worked with dementia patients before.  I knew she would eventually not know who I was, that I was going to have to be her parent.  Before the cancer diagnosis, it was pretty slow changes, she was still mostly there.  There were still times that she wasn’t, but for the most part she was.  Then, came the cancer.  I still have a hard time saying she has it.  It has sped up the dementia and tonight it hit me harder than anything has ever hit.

“I want to go home.”

“Mom, you are home.  You never left.”

“I know, but I want to sit in my own living room and just be.”

After talking to her for a while, she meant she wants to go back in time to before everything changed.  “Mom, I wish I could do that, too.”

Every morning I wake up and have the same feeling I did with my father in law.  Going in the house and worry I am going to find my mom never woke up.  That  feeling every morning wears on you.  You know you need to check on them, but you are scared to find that they passed during the night.  Then when you see that they are up, or just even breathing, its a huge sense of relief.   As a caregiver, you are relieved that you have them another day.  But yet, you are so tired mentally, emotionally, and physically that you sometimes wonder how you are going to deal with another day.  Then when the day comes that they do go, you feel lost.  You have spend months or even years caring for someone and you don’t know what to do.  Then, you lose it.  The reality that they are gone and you are going to have to deal with everything that deaths bring.  And I am getting there.  I have spent now almost 2 years with a form of this grief, but its getting to be stronger and stronger now that I sense my mom is ready to go home.

I pray that she stays just a bit longer to see her brother whom she hasn’t seen in 20+ years and have just one more anniversary.  They have been married 52/53 years and together I believe 55 or so.  But also tonight, I told her she doesn’t have to stay for us.  I know she is miserable.  Her voice is weak, her strength is going, and she’s becoming more confused by the day.  I hate seeing her this way.  I grieve for her not being who she wants to be.  She wants the old her back.  I grieve for the mom long ago.

 

Who Am I

Who am I?

In simple terms, my name is Nanci.  I am a daughter, a wife, a mother, an aunt, a niece, and a friend.  I am also a caregiver.

My mom, 71, was diagnosed Dec. 2015 a couple weeks before Christmas.  I will never forget that day.  The day before we had come back from an impromptu getaway to Galveston Island, TX and on the way back home, we stopped at NASA.  It was a Monday that I got the call from mom’s doctor.  I was running errands, actually I was paying the water bill.  I was in mid transaction when my phone rang.  When my mom’s doctor told me, my heart sank.  I kept it together long enough to finish paying the bill.  My roommate and then friend was with me at the time and it was a good thing too.  I broke down like a baby on his shoulder.  It all felt like a horrible dream, and I wasn’t waking up from it.  I had a feeling that she had it before she was diagnosed, thanks to my work experience at a home health company.

When mom started showing signs, I at the time didn’t notice until one day mom nearly killed the 3 of us… my son, herself, and her.  The road we were on, been on many times, she got confused on it being a 2 way. An 18 wheeler was headed and she didn’t see it.  I did, yelled at her to stop and she did.  She had been repeating herself, and again, I figured it was her age.  At the time she was 69.  Dad and I had talked about her repeating herself and at her doctors appointment that came up after that talk with dad, I got her alone and brought it up to her.  So, she did a memory test that they use to get a baseline where she was.  On that test, she scored a 13/30 and that raided many red flags for the doctor.  Blood work was drawn, urine was taken, and both came out clear… nothing showed up.  Next up was a CT scan to rule out strokes, clots, or brain tumors.  Nothing.  So, when everything came back clear, the answer to my question was clear.  Dementia.  I want to go back for a moment.  When I worked for the home health company, I had worked with a couple of dementia patients, both of different stages.  I had a conversation one day with mom on the way home from work and I told her “whatever you do, please don’t develop dementia”.  Little did I know, that conversation would haunt me for the rest of my life.

I’m going to fast forward to March of this year, 2017.  One day mom was getting dressed and I just happened to see a spot on her left breast.  Dad had seen it too.  I knew it was probably something I never expected to happen to her.  Cancer.  April 17, mom had an appointment and my dad was fortunately able to come with me on that appointment.  We brought it up to the doctor.  She looked at it, and immediately ordered a mammogram.  April 18, we celebrated her 71st birthday.  The next day, she had a mammogram.  They saw a mass.  Then a CT scan, then a biopsy on 2 places.  One on her breast, one in the lymph nodes on the same side.  I will never forget that day.  I felt the lump in the node, it was about the size of a half dollar and hard.  That feeling will forever haunt me.  Fast forward to the beginning of May for her oncologist appointment.  The day of shell shock for dad and I.  I will never forget the feeling I had when the doctor came in.  Stage 4 breast cancer.  It had spread to the left lymph node, left 8th rib, a node in her left lung, a spot in her right hip, and her adrenal glands.  When the doctor said all of this, I was numb all the way through.  I couldn’t think.  My mom, the one who had always taken care of me, was dying.  The only question I could get out was how long did she have.  He said in her case, probably no more than a year without treatment.  With treatment, 8-10 yrs.

Here is the funny thing about cancer and dementia.  Yes, mom could have  had treatment, but the amount of time she would have been given, she would be dying from the dementia.  When we got home, we talked about what she wanted to do.  She was done.  She said let it be.  So we are.

So, now, I am the daughter of a cancer and dementia patient.  The two most horrible diseases there are.  I wouldn’t wish this on anyone.  Not even my worst enemy.