New tired afraid and angry

[Tharosis]

I’m new to this site. My mom was diagnosed April last year with sclc and hit remission last month. During the last year I have been the primary caregiver to her. We have gone through near death and almost comatose through the nausea and pain fear and anger to finally hit remission. She finally woke up out of the fugue state that allowed her to survive only to get hit with a damn pandemic like Corona. My dad is an emergency room pa and had to quit his job because of the certainty that it would kill her if he brought it home. Then they make the doctors and nurses buy there own ppe and everyone is at even bigger risk and I’m so tired of being afraid. 
I have spent the last year ( I’m 35 in August) taking care of my mom. The only food thing to come out of this is I think I found my calling. And I love it. I love her and I have always loved spending time with her.

But how do I tell her now that she’s awake that there was not one moment where I wasn’t  terrified that when I went to check on her or get up in the morning that she’s be dead. 

How do I feel okay with myself when I know I have to quit smoking because it will kill her but I can’t not pick up a cigarette because of the amount of stress? 

how do I not feel bad when I wear myself so thin trying to take care of her and my dad and make sure everything is safe for them that I make myself sick? 

I don’t know the answer to any of these questions and so many many more and I’m scared and im mad and I don’t want my mom to die. 
Thanks to whoever is listening 

[MyWifeSCLC]

Hi Tharosis ... I'm sorry to hear about what your going through. I'm about 11 months behind you. You are doing fantastic caring for multiple relatives. I hope I have the strength that you have had to care for my wife. Don't know if this helps but you are an inspiration to me.

Steve

[Tharosis]

Thank you for saying that and yes it always helps to hear. So long as you keep your compassion and understanding and love through this tough time in the end it’s always worth it. 

[MyWifeSCLC]

I just saw another if your posts where you introduced yourself as Crystal.

Hi Crystal ... I'm sitting in the cancer center parking lot waiting on wife to get her radiation and the blood work. This is a daily routine with radiation that will be over next Tuesday. After that its chemo only so parking sitting will only be 3 days a week, every 21 days.

If you are okay with it you might post in the SCLC section about your moms cancer, treatment, any issues, etc. There might be some things that I can learn from you.  I certainly don't want to inundate you with questions but i am always looking for how other SCLC folks were treated.

Steve

[Tharosis]

Hi Steve

i haven’t posted in the sclc group but I certainly can and my mom encourages me to share our story and what we went through and I’d be happy to answer any questions I can for you. I do know that me behaving as normal as possible made her feel normal even when she was sick. And we laughed a lot but sure I’d be happy to share 

[Steff]

Crystal,

I briefly responded to your other post.  Thank you for sharing your struggles with caregiving.  It's not an easy job and so many of us have felt the same way you are right now.  I wore myself so thin that I was a zombie at work and had nothing left to give my husband.  He felt abandoned, rightfully so.  I was thankful he worked graveyard shift because I would come home from work and lose it, screaming and crying in the shower.  I'm pretty sure our 2 cats thought I had gone crazy and, honestly, I had. 

I live about an hour from my parents, so I was not with my mom everyday.  This is a good thing because I work with individuals experiencing homelessness and even though we were not concerned about COVID then, I am definitely exposed to stuff that could be detrimental to my mom's health.  I installed a couple of security cameras so I could keep an eye on my folks while I was away (my mom was the caregivier for my dad during both of her cancer battles). I was obsessed with checking the cameras every few minutes, it was awful.  I call my mom every day on my way home from work.  Our discussions would revolve around how she was feeling, is she eating, is she taking care of herself, etc.  Every time I hung up the phone, I would feel sick with worry that it would be the last time I spoke to her.  But slowly, our conversations started to be more about her day than how she was feeling.  The pit in my stomach from worry started to subside. I now only check the cameras a couple times per day.  My dad is now in an adult family home and I just want to make sure my mom is fine.  Cancer has changed our life and we will never go back to the way things were, but we have found our new normal.  You will be able to find that to.

I don't know what kind of relationship you have with your mom, but I am extremely close with mine (I'm an only child and she has always been my best friend).  I put the pressure of being strong on myself and work very hard at it.  I keep the tears at bay when I am with my mom and cry away from her.  But there was one time where I was so scared that I would lose her that I just needed reassurance from her.  She was laying in bed. I laid down next to her and started to cry.  She hugged me and I asked her not to leave me.  She promised that she wouldn't.  She held me and we both cried.  That moment was exactly what I needed and gave me the strength to continue fighting for her.  It did not negatively effect my mom in any way and brought us even closer.  I bet your mom can handle hearing your concerns, just like my mom could handle it.  And who knows, it may change things for the better.

Finally, do what you need to do to take care of your mom, even if it is wearing you thin.  One of my pet peeves was when people told me I should leave the hospital and get some rest or that I needed to take better care of myself.  Taking care of myself means that I am taking care of my mom.  Despite total exhaustion, I pushed on.  You should do what you see fit.  You will survive this no matter what your choice is.  Ohh, and give yourself a break about smoking.  If this is your way of coping with stress, fine - who are we to judge? Smoke outside, away from your mom. I have family members who smoke.  They know to smoke away from my mom.  She has had no health issues related to being in the presence of smokers who do not smoke around her.

Hope some of this helps.

Take Care,

Steff

[Tharosis]

Thank you so much for you reply and your uplifting comments and support. I needed that so thank you

[Blossomsmom]

Oh Crystal, I’m so sorry you are going through this, I know how painful it is because I too am going through it as well. This is my second go around. My dad had lung cancer in 1991. My Mom was his primary caregiver & I helped out when & where I could. Back then treatment options were very limited and he died 5 months after being diagnosed. I was your age back then and it was devastating. But now I am my Moms caregiver and it’s a whole different ballgame. Like you and Steff, I worry incessantly about her and I am afraid all the time. She is soon to be 91 but still lives independently in her own home up the street from me. If I hear a siren, I freak out although I know she would call me first if she was having a problem. My Mom was hospitalized last December, a result of a bad reaction to a chemo drug. I was beside myself. There were a couple of times I wasn’t sure she would make it. It was decided at that time that treatment was no longer an option and it was suggested that she consider hospice. She and I had a long conversation about it and about what she wanted and didn’t want as her life winds down. Hardest conversation I’ve ever had with her but one we both needed to have. She decided to sign on with hospice even though she didn’t feel it was necessary at the time. I think she did it for me and for that I’m grateful. It’s good to know they are there for us 24/7. Especially now with COVID-19 raging. That’s another big worry. I am isolating myself from everyone to keep from being exposed it and then exposing my Mom to it. I can’t stay away from her. I would never get that time back. My daughter is an Emergency Room RN and now can’t see her grandmother because she’s afraid she could unknowingly expose her to the virus. Sometimes, well most of the time it is all overwhelming. But I try everyday to tell myself my Mom is still here and above all, that’s what matters. Each day she’s still here is a blessing and it’s what makes me put one foot in front of the other even when I’d like to just go to bed and pull the covers up over my head.