It needs to be different this time.

Echeveria
Echeveria Member Posts: 8
in Caregivers #1

This is my grandma's third time having cancer.

Years ago she had a double mastectomy to get rid of breast cancer, then it turned into lung cancer so she had another surgery and chemotherapy. And now, five years since the last round of chemo, the lung cancer is back at stage four. She raised me and neither of us get along very well with my mom. When she had chemo before I quit work and school to be her full time care giver because caring for her during classes or a part time job just wasn't enough. Her sister helped occasionally, but my grandma did not like or trust outside help and demanded my understanding of the medical stuff, my loyal service, and my patience and kindness. I was too overwhelmed and unaware to look for outside resources or help. So we both went into deep depression and my health declined caring for her, sleeping very little, putting all her needs before my own, I have IBS and anxiety. I've read similar experiences that cancer patients can become scared and paranoid and she demanded everything be extra sterile, I was constantly cleaning and rearranging furniture, and if I became too tired I was scolded becasue she was the one with cancer. It was a terrible experience, she beat it and went into remission, but it took me years to grow away from those constant expections. She got used to me catering to her every need. Unfortunately I was very good at calming her down, remembering scheduling, talking to her doctors, and being at her beck and call. 

I am in my mid 20s. Eventually I left her continuous upkeep to herself as she became stronger and was able to go to her own port flush appointments and checkups. I've continued to live with her, changed my college focus from medical to visual arts, got a car, found a wonderful boyfriend, worked on saving money and trying to figure out what I want my life to look like, and stopped taking classes when they got too expensive. Both my boyfriend and I have anxiety and history of depression so we quit jobs and tried others. My boyfriend got a puppy we've been raising together. Then I was in a car accident in March and while there were no injuries, suffered trauma with everyone expecting me to continue driving right away and get things done. It's not the first time I've wanted therapy.

Then I found out, while I was desperately trying to find some freedom and growth, she was not seeing her doctor when she had a flu, then a cold, and not going to her 6 month checkups. She asked me to take her to the emergency room one night when she was extremely short of breath and that's when they told us her cancer was back and that it looked pretty bad. They didn't even have a firm diagnoses then, but I just knew it was stage 4 and I was devastated. I have been mourning her end ever since. Since that night the clock has been ticking. Her oncologist was contacted right away, tests were ordered, and I basically had two weeks to spend as much time as I could at work, with my boyfriend, and taking care of anything else before the inevitable need for my services all over again. But I can't do it. Not like before. I want to keep my job, enjoy meals out when she can't stand the smell, see my boyfriend. I had to cancel a trip to the beach, cried when I told my boyfriend we couldn't go because chemo was coming, and just can't seem to get over the hearbreak of cancer stealing the parts of my life that I love when I thought I'd made progress away from that pain.

So I sent the word out to friends and family and my grandma is more open to outside help. I've enlisted my mom, but she has so much to catch up on, can be pushy and insensitive, and now I have two people to calm and explain the doctor's advice to. I found out there are many services I can request with a cancer social worker, like in home care checkups and cleaning service. But I can't help but feel doomed every time something doesn't work out. My mom hasn't been able to take medical leave from her job to help more yet, my uncle hasn't cooked her any food. My mom has already upset my grandma a few times, but I need her as an extra driver. Friends have offered to take me out or away from the situation for a bit, but I'm worried I'll have to stick close like before and never leave. I don't even feel I'll have time for therapy to take care of myself. I cry way too easily now. I have so many good people in my life now, but I'm the only one that knows the full reality of being a caregiver during chemo. I'm tired of managing things alone, I have plans in motion, and yet I still feel as though I'll have to take over like before and wear myself out.

What can I do to ease the panic until I can talk to a social worker or get help?

Comments

  • GingerMay
    GingerMay Member Posts: 134
    #2
    Time to change things

    Take back your life. What you have done already is good, but you are in your 20's and deserve to have a life where you are at the center of it. You have a job, so please keep it as it gives you financial independence  and savings for your future which you need.  You have a boyfriend and you deserve to go on trips and go out to dinner and nurture that relationship.  You also got a darling puppy to raise who deserves your time.  You do not owe your grandmother your life even though she raised you, and ceratinly do not need to accept that you need to sacrifice yoiur wellbeing to be her primary caretaker. Set boundaries for yourself and even though others may push back since they are used to you being in such a role, please stick to them for your own sake.  Perhaps make a list of all things that need to be done, and decide what you can realistically do and set time limits.  Anything outside of that, make arrangements for others to do.  You do not say whether your grandmother has dementia or other limitations, but if she is otherwise healthy she should be able to accept the help of others.  

  • Echeveria
    Echeveria Member Posts: 8
    edited May 2019 #3
    GingerMay said:

    Time to change things

    Take back your life. What you have done already is good, but you are in your 20's and deserve to have a life where you are at the center of it. You have a job, so please keep it as it gives you financial independence  and savings for your future which you need.  You have a boyfriend and you deserve to go on trips and go out to dinner and nurture that relationship.  You also got a darling puppy to raise who deserves your time.  You do not owe your grandmother your life even though she raised you, and ceratinly do not need to accept that you need to sacrifice yoiur wellbeing to be her primary caretaker. Set boundaries for yourself and even though others may push back since they are used to you being in such a role, please stick to them for your own sake.  Perhaps make a list of all things that need to be done, and decide what you can realistically do and set time limits.  Anything outside of that, make arrangements for others to do.  You do not say whether your grandmother has dementia or other limitations, but if she is otherwise healthy she should be able to accept the help of others.  

    I needed to hear this!

    Thank you so much GingerMay!! Your encouraging response had me in grateful sobs. My boyfriend and mom have been telling me the same thing, to stop the extreme sacrifices.

    This week went well for my grandma and she is doing fairly well. But the days before chemo I was working, cleaning the house, or waiting up for responses while she was in the emergency room and then kept overnight for fluid draining by her lung. She came home and had a great night sleep while I was an emotional wreck. On chemo day both my mom and grandma bragged about how much energy they had while I did the driving and was exhausted all day. Then my grandma microwaved food for herself, but the next day told me I couldn't prepare my food because of the smell but also told me I couldn't leave to get myself food because she couldn't be alone. So I went without dinner since I had a problem with my food ordering app. After a miserable week skipping meals and sleep, a breakdown with my boyfriend, and my mom telling me to stop being negative, I read your response and realized I'd had enough. Waiting for permission to take a break is not an option. "Take back my life" has become a mantra.

    My mom has helped me sign her up for in home care nurses to check on her and the first one came today. She has friends visiting once a day and I have made it clear that I need to participate only when absolutely necessary. It is a lot for my grandma to get used to, but it felt really good to go back to work, I pushed myself to work out after my shift, I spent today with the dog and boo, and more family is coming next week. She was very active before this, so it's only some things she absolutely needs help with and getting used to calling the nurse lines she is given when she has questions instead of guessing. My depression hit so hard in those few dark days I don't want to go back. One doctor suggested she plan short trips to the library and coordinate help to get to church and plan things to look forward to and stay positive. It made me feel like I'd have even more to do for her instead of planning things to look forward to myself. But I think the support is looking more real now. And I think my grandma finally sees that I need to manage my stress as well. My mom reminds me that she is more capable than she thinks. I'm finally starting to believe it. Anxiety and fear hits people different ways, but I think we're finally getting help. Casseroles are being delivered, my close friends have offered to drive and help me with errands, and we're learning to accept. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #4
    Hi.  I haven't had much time

    Hi.  I haven't had much time in my life to post, but I'm so glad to read that you are doing better.  My elderly mother was ill at the same time as my husband.  We didnt live close.  All I can tell you is that there are services who can help your grandma.  Get a pharmacy that delivers or mail order.  There are medical rides to appointments and they will wait for her.  Food can be delivered by Meals on Wheels.  If she has a good doctor, they should be telling you all about available services for seniors in her community, and definitely setting up in home care covered by her Medicare insurance.  Did you know that you can get paid for your caregiving?  Look up senior services in your community.  They are wonderful at helping.  Some churches have programs that have lovely people willing to visit or drive her to church.  The same thing at senior centers.  My mom liked books, movies, and puzzles.  It kept her occupied for a time.

    You do have to take charge of having Your best life.  If Grandma is a bit manipulative, find a way to deal with that.  Perhaps she would feel better with one of those emergency medical alert necklaces that has an intercom for assistance.  

    If you get this stuff set up, you will feel so much better, and you will have your life back.  You are very important too.  Your personal relationship with your bf or husband is very important too.  Good luck to you.

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