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Why this blog, why now

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.

 

How Am I?

I was asked to write this by someone but it’s for everyone who is no longer caregiving. In a short answer, I’m ok. I know it sounds cliche, but it’s the truth. I’m ok. I’m actually great. But, there is so much more to this answer. How did I get to be ok?

It’s been 2 years since mom passed. It took me a while to actually to start really caring for myself. For the first year, I was really in survival mode. Learning how to deal with the firsts without mom. First birthday (which mine was 12 days after she passed), her first birthday without her, first holidays, and then the big one.. first year anniversary of her passing. I was trying to just keep my head above water. I was also having to be mom and wife. Some days, all I wanted to do was just curl up in a ball, eat ice cream for dinner and be done with the day. Then others, I was able to function like nothing happened. I was trying to take care of myself, but I guess my mind wasn’t really in it. When mom’s 1 year anniversary came, I will admit, I crumbled. Reliving all the events that happened with mom was unbearable. Thankfully, my husband and son got me through that day. Not long after that, actually 12 days after that 1 year anniversary, we lost my mom in law. Yes, that was my birthday. Losing her on my birthday was a punch in the gut. I was mad at her for dying on my birthday. I know she didn’t plan it, but it hurt unlike anything I’ve ever felt. For the next 7 months, we dealt with paperwork, lawyers and judges to help get my husband made executor of the estate since there was no will. We both went into survival mode. We ate out of stress, ate for comfort, ate to survive. On top of that, they say the second year is the hardest after someone dies. well it certainly wasn’t easy street. Fast forward to late summer 2019.. I weighed myself and had the shock of a lifetime. I was at my highest weight ever.

Now, I’m going to back up and say this. I have been taking vitamins for a while now. And yes, it was helping, but in survival mode, I didn’t. I just ate and drank whatever. I really didn’t care either then. But, after having that wake up call, I started going back to my ways before life went into survival. I knew what worked for me in the past. I started listening to my body.

I knew when I would eat breads, pasta, etc I hurt. My arthritis would flair up and I hurt all over, especially in my back. Knees would swell and stiffen up. But I also had heart palpitations and anxiety. So.. I cut out all grains. I feel so much better and not weighed down. I also noticed when I would eat most dairy my stomach would get extremely bloated and had severe stomach issues. So, I cut out almost all dairy and even with what I do have, it’s limited. Sodas I have a love hate relationship with. When I am stressed, when my throat itches from allergies, when I bored, when I’m anything that isn’t positive, I grab a soda.. specially Dr Pepper. I noticed at times I would get a headache from the amount of caffeine in them so I would stop drinking them, then start up. I also had severe heart palpitations as well from it. The anxiety, the anger, and the breakouts all came from sodas.. so, I quit excess sugar. Also the vitamins I take help a lot. I have done a lot of research on vitamin cures for issues that I’ve been prescribed medication for. The reason I did my own research was for one, the doctors won’t tell you alternative meds, and two, I hated the way it made me feel.

All of the above was just a start on me living again after caregiving. All of this was not done overnight. I started paying attention to everything in November. Vitamins were first (actually way before I changed other things). I knew when I didn’t take my vitamins, especially after a couple of days, my mood and my energy was gone. My eating habits have drastically changed since thanksgiving. I eat real food. And when I do slip up… man do I ever pay for it. Example.. which actually prompted me to go ahead and write this. Last night I got a Dr Pepper because honestly I don’t know why. I knew better than to drink one late at night because I don’t sleep when I have that much caffeine at night. (Finally went to sleep around 3 am). I also became really angry and annoyed with everything. This morning when I did wake up, I was so annoyed with everything. I was angry at myself for being stupid and I was picking fights with my husband. I finally started feeling normal this evening mentally, but physically I still feel like crap and it’s been 24 hours since I’ve had that Dr Pepper.

Not all my answers to me being ok were diet related, but they were a big part of it. It helped me be able to do the other part.. live. Mom always told me to not worry about her. She wanted me to live my life and travel and do all things she wasn’t able to. Her biggest regret was not traveling. Even just around the state. She really regretted not going like she wanted. Last year this month I had also lost one of my best friends in a car accident. That made me wake up and realize tomorrow is never promised and I really woke up. I got my camera and started going out and doing what I love… photography (you can see my work on Facebook at Nanci K Photography). It is my therapy. It calms my mind, and I get a good workout as well. Another thing I do is cross stitch. When I’m bored at home, it’s what keeps me busy. But the biggest change for me has been going to church again. My husband and I changed churches and we have been doing more for us.

My husband bought a motorcycle (no, I’m not telling you to go buy one, although we find it very therapeutic) and we ride together. He found a Christian motorcycle group and we have joined that. We have been reinventing ourselves. The version of ourselves before caregiving is gone. Even if it came back, it wouldn’t be the same. Why? Because we have been through so much. Seen so much. Watched someone die. That changes you. I’ve watched my dad in law, mom, and mom in law all die. You will never revert to the old person you were because what you have been through has imprinted on you. I was driving myself crazy trying to figure out why I couldn’t myself again. I then realized that the old me was gone and I needed to reinvent myself. This article really hit me and showed me why I couldn’t find the old me.

Reinventing yourself is hard. It’s hard because it’s the unknown. I was oddly comfortable with pain and grief and my husband pointed it out to me and it was a wake up call. I realized I really needed to get out of the box. But what is helping me the most is my husband and I are reconnecting. I’m not only learning to be someone who isn’t caring for someone else, but I’m also learning be a wife to my husband without the worry of my son who now is on his own (for the most part). I’m putting myself out there so to speak. We joined a church that we really love. We joined a motorcycle group that surrounds us with like minded people. But the biggest thing about finding life after caregiving… prayer.

I prayed so much over the last few years for strength to get through the next day, the next battle, to bring peace and comfort to my loved ones. Now, I pray for direction where God needs me to be. We cannot live life after trauma (and that’s what caregiving can be most of the time) without support. When someone is injured badly, they need help to recover and keep things going for them. But when we are mentally traumatized, we try to go at it alone and we just can’t. I know prayer is a personal thing, but what I will say about my prayers is this. I talk to God as if he was right here next to me and I was pouring out my heart. But then I thank Him for keeping me going. For steering me in the right direction. God is right there to help us, but we just have to let Him in. Prayer is so important when it comes to caregiving. We need His strength to get us through the hard times. We need his guidance to make sure we do what is right for our loved one. But, we also need to thank Him for what he has done for us.

If this seems all over the place, I’m sorry. I tried to keep it in a good flow. But, this is my personal story of how I have started living in the moment. Life after caregiving doesn’t have to be boring. I know that when we start allow ourselves to live again, there is guilt. Trust me in this… no one would want us to be at home miserable for the rest of our lives. Grief is a personal journey. I’m not saying go out and do whatever right after that person goes. But what I am saying is, don’t feel guilty if you want to do something fun. Living isn’t just eating right or going out and doing what you enjoy. It’s really a combination of things. I hope this helps someone. There is life out there after caregiving. You just have to listen to yourself and your body.

2 Years Ago

It’s been two years since mom has passed and in these two years, it’s been a roller coaster. So many emotions, so many tears, and so many adventures. My husband has been amazing helping me in dealing with massive breakdowns and the massive mood swings. Not long ago I had the worst breakdown I’ve ever had.

This New Year’s Eve I decided to leave the past in the past. All the pain, all the suffering, all the negativity. I spent it with people who mean the most to me. And yes, I drank. A lot. I realized I’m not as young as I use to be lol. I came in the new year with a new attitude. That also goes with today.

Last night I had an amazing dream about mom. She was young, she was happy, smiling, and she was playing with her dog, Sam. Sam was a poodle mix that she loved dearly. He passes away not long after I was born, but there are tons of pictures that she had of him. I knew it was him. Mom was full of life. She always gave all of herself in whatever it was. She was active in church, helped with so many things, and was mom to all my friends. If you were a friend of mine, you were adopted. When I met my husband, she loved him before they met. She would give you her last dollar if it meant you were going to be ok.

She taught me so much about cooking, baking, sewing, and how to be a lady. This photo is one of my dad’s favorites. Mine too really. This is how she should be remembered. Her smile that was infectious. Her hugs that were genuine. She was my mom, grandma to my son, a sister, an aunt, a cousin, a friend, and a wife. And with each title she embraced it fully. There are days where I really miss her but I saw something that helped me. From the time she has been gone, she has been helping prepare my place in heaven with our Almighty God. Can you imagine how great it’s going to be?

Judy Nell Gill, April 18, 1946-January 5, 2018

Where Do I Belong

Here it is, almost Christmas and I find myself lost. I have had an identity for several years. I’ve been a stay at home mom, a caregiver, and recently business owner. But now, my son is on his own, caregiving days have been over, and business was sold even though I’m trying to get my photography business going. But right now, I’m so lost of what to do with myself. Even if I were to find a regular job, what would it be? Not working a regular job close to a decade doesn’t make things easy. Sure there is fast food, but honestly, I don’t see me being able to keep up with it. Caregiving would be great, but honestly I don’t know if my body can handle it or my mind. I’ve done my own thing for so long, I don’t know where I should be.

Then today we realized the floor in the front of the trailer we live in, the are which is my son’s room, is crumbling. So now we really need to figure out what we are going to do. We need a new place to live, but how are we going to pay for it? I am thankful that I do have a roof over my heads but being in this trailer has about done me in. I want to be in my own place surrounded by my own things and not have to dig for what I’m looking for. Money is so much tighter than we expected.

Christmas this year hasn’t been the same. I haven’t decorated this year. Part of that is why I want to be in my own place. I want a regular tree but no place to put it. My husband has been trying to make me feel better. But right now the only thing I know would make me feel better is a home. Not just a roof over my head.

When PTSD Strikes…Part 2

There wasn’t suppose to be a part 2 to this.  I really didn’t want to have a part 2, but there has been some scary thoughts in my mind lately and I know they are related to everything that I have been through.  But its getting harder to ignore these thoughts and it sends me into tears almost instantly.

January 2018 I lost my mom and my first cousin.  January 2019 I lost my mom in law.  Things come in 3s.  3 deaths.. 2 Januaries.  My head is expecting 3 January deaths and I cannot cope with the thought of losing someone else in January.  I have lost a few other family members in January, but they were great aunts.  I was close to them, but not as close as the ones I am writing about.  My brain is saying “Who is it going to be next? Is it dad? Is it my husband? Who?”  Dad will be 78 in January, husband will be 42 in March.  I am not able to stop the thoughts of death around me.  I am terrified.  These thoughts are debilitating.  I cry at the drop of a hat.  I panic over other things that are stupid.  There is so much going on that I have a hard time thinking about what is right in front of me.

I have an amazing son and husband and dad and friends and all these people I know I can talk to about it, but yet I get interrupted and told to calm down.  NO! I cannot calm down and talk in a normal voice. This is how I am when I am upset and need to scream and cry.  I can’t hold it in anymore.  I am terrified of losing anyone else because I am terrified of what its going to do to me.

All I want for Christmas… is to skip into February… but wait.. one of my best friends was killed in a car accident and that was rough.  I don’t know what is harder.. watching someone die or losing someone in an instant.  So for Christmas, bring me March.  That’s a good month for me and its hubby’s birth month.  April I will be ok even though its mom’s birthday month.  May is fine, June is awesome.  June is our anniversary.  July-November all good, especially November when my amazing son was born. Can I just skip over the bad months? I am probably on the verge of another massive breakdown.  I probably need it, but the energy it requires is so much more than I have.

And really, all this is more than just being afraid of losing someone.  Its financial, its other personal stuff that I have to work through.  Some things I do have I that I am dealing with isn’t in any relation to what I keep on this blog, but it does take a toll on me when I stop and think about it.  And some things I don’t want but only certain people knowing.  I am not asking for money, but right now it would ease things.  I know God will provide for us.  I have always believe that.  I know God will get me through this.  Its just hard to deal with everything at once.

When PTSD Strikes

*The word Son and Dad are capitalized in place of names to protect privacy.*

Some people know the back story that I am about to say so if you know this back story, feel free to skip.  I feel the need to tell you a deeply personal story because this is something that I didn’t expect to happen. It seriously caught me off guard.

The back story involves a kid who I think of as another son and his dad.  Son was taking care of his grandmother and Dad at the same time, alone.  Grandmother passed a few months ago and was the soul caregiver for Dad after something with paperwork happened and insurance was cancelled.  Dad has a few conditions that cause severe pain and his joints have become frozen and bed bound.  Because of pain, Dad would not allow to be turned.  This went on for months.  And I mean months.  Because lack of insurance, Son lost his help from caregiving agencies.  Son became extremely overwhelmed with taking care of Dad.  Over a period of months, I could see Son was drowning in caregiver overload.  His last visit, I could read in between the lines.  He was begging for help.  He said his cousin was going to call Adult Protective Services (APS) but I had the feeling it wasn’t going to happen.  I made the decision to make that call and get Son and Dad help. Son was so overwhelmed with what needed to be done, he just shut down.  They have help, Dad is getting treated for infected bed sores and Son is getting much needed relief.

So now my story.  Me helping Son brought up some suppressed memories of me being in caregiver overload and everything about my mom that she went through.  On the day everything came rushing back, hubby and I had an argument that went way south real quick and over something very minor.  Well, after we both took time to cool down, I told hubby that with helping Son, it brought back everything from mom and I crumbled.  I had a massive massive breakdown.  I was hyperventilating and coughing from dry heaves and barely able to say what I was feeling.  But what came out even surprised me. I don’t see my mom in the house anymore.  There are pictures and a few things of hers, but it looks like dad has erased her almost completely from the house.  Dad won’t talk about her, I can’t talk to him about her.  I still can hear mom’s cries from pain and all of the pain from losing her just came up.  The day I broke down was the hardest I have ever cried since mom got sick.  Probably ever.  I felt it coming, but I kept pushing it down and pushing it down because it was easier to and the energy that involved swallowing it was less than having the actual breakdown.

Everyone talks about PTSD with soldiers.  But caregiving, its never talked about.  Even the therapist I went to to try to get help for it swept it under the carpet.  I said to her the first day I was there I was having issues with it.  I thought I had written a post about PTSD in caregivers, but I guess I didn’t. Google PTSD caregiving, there are a few that come up, but the rest is for military.  PTSD is real for caregivers.  The screams from mom being in pain when turned still to this day I hear.  Caregivers don’t give just a few days, its day in, day out, 24/7/365 for sometimes years.  It will literally imprint on you.  I should have gone to a different therapist to deal with it, but I didn’t.  Should I go back.. yes.  Will I… honestly.. probably not.  I don’t want to be put on meds.  I am coming up on 2 years on losing mom.  1 year on losing mom in law.  What I can do, not hold it in anymore.  Holding in your feelings is the worst thing you can do.  Things will build and build, and just like a volcano, the eruption is massive and it won’t stop till the pressure runs out.  That was me.  The rest of that night I cried, the next day was on and off tears.  Its been a few days, I feel better.  I know that I have an amazing husband and son who understand why I have these days.

It wasn’t just me helping Son get help for his dad.  It wasn’t just the argument hubby and I had.  I have other personal things going on and that was just the straw that broke the camels back.  It was not just one single thing for me.

What PTSD looks like for me.. being in constant fear that after a great day, something bad is going to happen. Its being on edge when your last parents isn’t doing well.  Its sometimes wishing that your mom would come to your dad saying its time to go home and go in his sleep because he is so tired.  Not just physically either. (This one really gets me on bad days, and no, I don’t want dad to go anytime soon.)  Its the flashbacks of seeing mom in pain.  Its the sudden feeling of being alone in a full room.  I don’t know how else to explain it for me.  I can’t explain how it will be for you, but I am sure it will be something like this.

I hope this helps someone.  It was scary for me.  I never expected to have this happen. You are not alone in this.

 

Its Ok To Be Happy

Its been almost 2 years since mom passed, its been over 5 since I had a sense of normal.  We finally got the food truck opened and yesterday we had an amazing day.  We were able to set up at our local race track here and we nearly sold out.  We made a lot more than we expected as well.  Give me a minute to get to the point but I have a back story here to get to the point.

There was a man that we knew that use to work at the track and we were friends with him.  He passed away 7 yrs ago.  There was a lady that came over to introduce herself and she was talking about coming back to the track to work after her husband had passed.  I asked her if she knew our friend, Stanley.  She said “oh, that was my husband.”  We ended up talking for probably an hour and she gave me some great insight about living after a death. Let me tell you, yesterday I laughed more than I have in a very long time.  She validated some things for me and I think I healed more in one day than I have since mom has been gone.

First was being angry at God.  I have talked about this and in all reality, its normal to feel that way.  Those who believe in God, we trust that He isn’t going to let anything bad happen to us.  But yet, they do.  Not as punishment.  Just things happen and we deal with it as best as we can. I look at it as a faith tester.  We pray that God will fix things, heal us, make things happen for us, but sometimes those answers are silent.  There is not always a right away answers either. And sometimes, there are no answers.  Then we get angry at God for not giving us this big, elaborate answer right when we are needing it.  We get angry at God for not only letting our loved ones suffer, but us suffering as well.  I suffered a lot taking care of mom.  I lost my identity taking care of mom.  I use to be happy, easy going, peppy person.  When I was taking care of her, I was stressed beyond measure, I became very depressed, and I was having severe mood swings.   Then when mom passed, it was like a weight lifted off my shoulders, but it was replaced with getting my family back on track.  This one thing I prayed about…. a lot.  I wanted normalcy again.

Second, its ok to laugh.  This is something that was hard for me to do, especially in the beginning.  When mom passed, I felt like it was wrong for me to laugh when something was funny, when I was having a good time.  Yesterday, laughter came so easy.  Without guilt.  I didn’t even second guess it either.  I didn’t even think about it yesterday..  Today, I realized that I haven’t laughed like I did yesterday in a long time.  She told me some stories about her and her husband, her grandchildren, her great grandchildren.  We talked about marriage and she told me some stories about them when they were younger.  Laughter is good for the soul. Laughter is healing.  Its invigorating.

Yesterday was the first day that I felt like everything is really going to be ok.  We had a really successful day at the track and we have a really good future with the track for next race season and the last big one of this season.  We have a bright future ahead of us.  We have become stronger both mentally and physically.  What I went through with mom gave me the mental strength to keep going when the going gets tough.  We got physically stronger as well.  You would be surprised how much stamina and muscle strength you gain when you build a food truck and when you are in and out of it several times a day, plus the prep during the day.  Yes, weight loss has also happened.  Its really been amazing.

I have seen people ask if it does get better.  Yes, it can.  You can’t force it.  You have to let the grief pass through you.  It has no timeline.  It will happen when it happens.  Our food truck journey started all because my mother in law wanted us to better ourselves.  She wanted us to make a future for ourselves and I think we are accomplishing that.  Happiness comes at its own pace.  Don’t feel guilty about being happy after losing your loved one.  Would they want you to be unhappy for the rest of your life?  Of course not.  Yes, there are days that I really miss mom.  I have missed her so much and wished she was here to see this and to see me smile again.  But, I know that she sees me from the heavens.  Some of her desserts will be a part of the truck because she and my grandma taught and gave me the love of baking.  Its ok to be happy.  It really is.

Why?

Today is World’s Alzheimer’s Day.  It is to bring light to one of the most devastating diseases out there.  But to us caregivers, who have cared for someone with it, everyday is Alzheimer’s Day.  Of course, mom had dementia which is an umbrella term for memory loss then there are several different types, with Alzheimer’s being the most common form of dementia.  But that isn’t the reason I write this.

Mom has been on my mind a lot lately.  My husband and I are following our dreams and are building a food truck.  Bbq to be exact with a side of snow cones.  I have really been wondering what mom would have thought about this venture.   She was always our biggest fan no matter what.  But, she knew my husband’s love for cooking, and how good he is at it.  The reason I have been thinking of mom a lot lately is because of one thing.  Why did she get dementia?  There has been a few breakthroughs on research for this horrible disease.  Scientist have found that a probable cause is from the same bacteria that is in gingivitis.  Yes, that gingivitis that you get in your mouth.  But, there has also been long term studies on certain medications.  Lipitor, a cholesterol reducing medicine, has a long term effect of memory loss.  Mom was on Lipitor for years before she was diagnosed.  Also, mom was addicted to Diet Coke.  Diet Coke, along with so many other diet drinks, has aspartame, has also been linked to memory loss.  Now, I am not saying that these are the causes of dementia, but what I am saying, this is what I believe either one or both of these was the cause of my mom’s diagnosis.

Then you add in my mom was diagnosed with stage 4 breast cancer a year and a half after her dementia diagnosis.  She had it in her lymph nodes, a spot in her left lung, her left #8 rib, her adrenal glands, and her right hip (which happened to be the spot that grew).  She had an MRI done when she was diagnosed with dementia and they checked for any brain cancer, which fortunately wasn’t there.  Doing research while writing this, mom did have a couple of factors that might have led to her developing it.  But then I wonder this, she had stage 4 when diagnosed.  Research shows that an average of 5 years for a tumor to be felt.  So, mom had breast cancer before she had dementia.  Was there a cancer cell that they didn’t pick up on the MRI?

I know I will forever drive myself crazy with trying to figure out what killed my mom.  I hate that I have even thought of this, but honestly, its a real question.  My mom refused to get a mammogram. If she did, she could have probably saved her life.  She could have had spared me of the heartache of watching her die before my eyes both mentally and physically.  Yes, I am pissed that she put me through it.  The only cancer on my mom’s side of the family was my grandmother (her mom) that had a melanoma on her wrist.  It was cut out and that was that.  Why did my mom have to be so selfish and not take care of herself.  Did her cancer cause the dementia?  I want to say yes.  I know things are missed on an MRI, especially if they are small.  But still.  I really now wish I could just ask her why.  Why did she not get them?  Yes, I am upset.  I miss her everyday and today, of all days, I realize it wasn’t the dementia that mom developed first.  It was the cancer and cancer is what did her in.