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Let's Discuss...Caregivers
This week on April 6, 2021 it was National Caregivers Day! A big thank you to all the wonderful Caregivers out there providing care and support!


Caregiving is a big job. It often involves taking on many new, important responsibilities. It’s not something you expect or plan ahead for. While you’re caregiving – you may forget to take care of yourself. But it’s very important to make sure that you take time for yourself. Caregivers who take care of their own needs and get the information, help and support they need are better able to take care of others.

Caregiver Discussion Questions:
  • As a caregiver are you able to find time for yourself? Do you have additional help?
  • What activities do you find relaxing?
  • What would you tell someone who is new to caregiving?

Person Diagnosed with Cancer Questions:
  • Did you have help?
  • When did you need the most support?
  • What was the most helpful thing someone did to support you?

19 Replies
qhmach
6 Posts
Person Diagnosed with Cancer Questions:
  • Did you have help?
  • I am lucky that we live in a city where we have support from both sides of the family and a lot of friends and coworkers. Our neighbours have helped out with yard work and with maintaining the house and have provided food and gift cards. Family provides support with feeding the kids and making sure their lives are as normal as possible. Between family. coworkers and neighbours, we are lucky as we have a large circle that provides psychological, emotional and physical support to the whole family. People would drop off food, take kids to hockey, pick up groceries.
  • When did you need the most support?
  • We realized that during chemo treatment days, with the kids going through online school that having assistance was helpful. They would end up with sleepovers with the grandparents who could support them with their schooling.
  • What was the most helpful thing someone did to support you?
  • Taking care of the kids has been helpful where we do not need to focus on their needs and can focus on doing what we need to for treatments or getting through routines. It allowed rest for me as I did not have to worry about the needs of the kids and could have undisrupted rest.
altachica
87 Posts
Lacey_Moderator‍ , my mother is my caregiver and accompanied me to all of my chemotherapy and other appointments. She is a retired nurse and was able to ask my oncologist questions that I wouldn’t think of. Because of COVID I have to go alone for treatment at the hospital.
Laurineb
40 Posts
I think as a caregiver for 1 1/2 years - few things pop out:
i went to wellsprings - cancer support facility - very beneficial and supportive

Meals prep and groceries were a bit problem as my partners taste buds were constantly changing. And digestion problems

I did not take enough time for me and was in overwhelm and exhaustion during and after his passing. Looking back i would have continued with my yoga etc. It was just the 2 of us - i had a lot of support from my side - he did not.

Whatever you do, realize its enough and appreciated. This is new territory for most, and we can only do our best.

If if you can enlist help, say yes....even someone driving to an appt one day can mean so much
Cherry
49 Posts
My caregivers were and are my husband and my 2 daughters.My girls have been my support system who understood what I was going through. My Oncology nurse was always very prompt and responsive. My doctor and the entire staff including chemo nurses and radiation therapists were very kind and supportive.God bless them all. A gratitude filled thanks to all.
law
428 Posts
Hi Caregivers,
Although I have not been a caregiver for a cancer patient, I was one of a number of caregivers waaaaaaaaaay back in 1985 for our friend Richard, as he was dying from AIDS. ....which was in the beginning of that pandemic. There was no drug cocktail, little research, and pain killers were ineffective. It was horribly painful and depressing for him, and I felt totally useless. I did not take care of myself; I stopped eating, and was a bitter person for a couple of years. I would advise caregivers today to seek counseling and rest while interacting with a patient.
Fast forward to today.... I was a cancer fighter when my friends pitched in to drive me to appointments, sit in the Emerg for hours waiting with me, and basically dealing with my horrid pain, nasty attitude, and yet they were so understanding and supportive. I preferred solitude, but they continued to 'barge into my life' and it was the first time I had ever really needed someone's help just to keep living. Making decisions for me was the best help I received and I still cannot find a way to reciprocate how much love they extended to me. While hospitalized for a spell, my 9 bandmates brought their musical instruments into my hospital room and played some wild Klezmer music for me....the nurses on the ward loved it, too!
law
Runner Girl
1510 Posts
Person Diagnosed with Cancer Questions:
  • Did you have help?
I had a driver to/from chemo because I was not allowed to drive. I did not need any other help. I went to work every day, ran on the good days, did the usual housework, shoveled the driveway in winter, prepared meals.
  • When did you need the most support?
I needed the most support directly after diagnosis, before I had a plan. I found that here at Cancer Connection.
  • What was the most helpful thing someone did to support you?
The support I received from Kims1961‍ and ACH2015‍ was absolutely invaluable and I can only hope to be able to provide that to others.

Runner Girl
Joy4thee
12 Posts
Learning of my partners Cancer and the beginning of treatment was less than 3 weeks. I've been totally overwhelmed. As treatment is over 200 km from our home we have been staying at a hotel for 5 weeks now. It has almost destroyed our relationship. I finally had to take some time for myself and went home for 5 days. We were both able to recharge from each other, remember who God wants us to be and how he wants us to act. Things are much better this week. I've learned as a caregiver that I should have taken more time for myself. When I went home alone I brought my car back and it has helped with the isolation. Since I'm working from the hotel room and staring at a wall all day it's great to be able to "take off" even for a few minutes after work. ( I say this as the tv behind me is telling me we are on a stay at home order as of midnight). I would also have utilized this forum more. I received some great messages and advice here. Only breakdown this week was doing laundry at the hotel last night. My partners laundry is just covered in dead skin and medications and fluids. His neck is so burnt from radiation. It brought me to my knees, right there alone in the laundry room. A good cry and prayer was all I needed. It was the only time I became completely overwhelmed by his treatment. 6 rounds of 35 rounds of radiation, and 1 round of Chemo left to go then we can go home!!!!

Thank you for all your kindness here.
ACH2015
2007 Posts
Runner Girl

Thank you so much for your kind words to me and Kims1961‍.

We have all realized, and have been fortunate to receive the benefit of support at our times of need. And I can honestly say, we have all paid it forward to others here on the site.

Completing the circle again and again.

ACH2015
Kims1961
2052 Posts
Runner Girl‍ So touched by the mention. The beauty of this community is the help you receive and the help you get to offer

You do so much on this site Runner Girl‍ , we are blessed that you are here!
Kims1961
2052 Posts
Happy Caregivers Day!!

All of us know that being a caregiver is more than a "Day" - it can feel like a lifetime, endless, hard.

As a cancer patient, I am so humbled by the care i received from family and friends.

Each contributed in different but important ways - some it was just a call to check in, some brought meals, some just watched Netfix with me so i wasn't along.

I think the most helpful thing that a friend did was rather than ask " if you need anything...." rather, they organized a meal train. They told me that each month, I would get a "goodie" box of food, treats and even some books to read! I called them our family guardian angels. Those that remembered my family needed support were so important to my recovery.

dster2400
18 Posts
I found that, one thing that I really needed was the occasional chance to talk about my feelings. Not allowing my negative feelings to build up inside. I was able to find people who didn't mind if I talked about my cancer, and they realized what I was going through so they didn't complain if I got irritated or angry on occasion.

That was a biggest thing. I didn't really need any help physically.
Whitelilies
918 Posts
Lacey_Moderator‍ Hi.....caregiving......Well I did feel I received some care....from my mom! My number 1 support person.....
She came with me for all appointments(pre covid)...she wiped my tears/there were plenty......she saw my bag "full of ***"......she supported me at my worst......she stayed with my at the hospital as I recovered......she gave it her all......she is my rock.
I hope to return the care, when she is in need.
I feel I am a caregiver too....for my boys.......they have Autism (sorry......not a cancer story....)....they need LOTS of care.....
Over the years, I have learned, the hard way; you MUST ;care for yourself. Period.
I preach it.
I practice it.
You must take needed breaks.....to find a peaceful place, inside.......
Am grateful for the lovely folks, on this site....
I thank you all, for caring and listening and helping

You ALL inspire me.

Whitelilies
Maly
16 Posts
As a caregiver:
I was a caregiver to my dad a couple of years ago. I did not make time for myself. I helped him as well as kept up with my work and my own family. I was overwhelmed and exhausted. I learned the hard way to ask for help. I wish I had done that sooner. My advice to someone new to caregiving would be that when people offer to help, take them up on it. Even if it is a shoulder to lean on or cry on. Every little bit helps. I think it's important to let someone know they are not alone.

As a person diagnosed with cancer:
When I received my diagnosis, I remembered everything I went through as a caregiver. I learned to ask for help and remembered to take time to rest and take care of myself. My husband and children were great caretakers to me when I was sick. I received lots of love and support from them and from family and friends. I reminded them to take time to rest or visit with friends and have a break. The most helpful things my friends and family did to support me was to check in, cheer me on, drop off some food or just call to say hi. It meant so much to me and helped motivate me to try to get my health back on track.
Littlebeth
38 Posts
As a person with cancer:

Did you have help?
My husband Dave was my rock in so many ways - driving me to the hospital for every appointment and sitting in the parking lot sometimes for hours, summer and winter; always making sure I had what I needed to make me more comfortable; taking over the grocery shopping and filling in where ever and whenever he was needed. When I was first diagnosed we decided to tell everyone and Dave established a huge email network called Team Liz, sending out regular updates and getting a tremendous amount of love and support back. It gave us both strength at a time when COVID meant we couldn’t see them in person. We had plenty of food, flowers and good wishes.

When did you need the most support?
Three months into my chemo we had a scare when it looked like my cancer might have metastasized to my brain. It was an excruciating 11 days until we got a consultation with a neuro-oncologist. It was the hardest time emotionally for both of us. We just held each other a lot and talked about the all of the good times we’d had. There were many tears but we ended each night watching a rerun of an old Seinfeld episode so that we could end the day with laughter. Thankfully, the cancer hadn’t metastasized although I am still under surveillance for a benign tumour on my pituitary gland.

What was the most helpful thing someone did to support you?
Five wonderful women who simply talked to me. My best friend, who called me several times a week and listened to all the good, the bad and the ugly and four cancer survivors who I called or emailed through every stage of my treatment for their experience and advice. They calmed me down, helped me deal with side effects and reassured me that I could get through whatever was coming next. (Much like Cancer Connection but I hadn’t discovered you yet.)









Trillium
961 Posts
Lacey_Moderator:
This week on April 6, 2021 it was National Caregivers Day! A big thank you to all the wonderful Caregivers out there providing
Caregiver Discussion Questions:
  • As a caregiver are you able to find time for yourself? Do you have additional help?
  • What activities do you find relaxing?
  • What would you tell someone who is new to caregiving?


As a caregiver I am able to find time just for my self. My son has a team that supports him with his disability in the community.. The nurse on the team was/is very helpful with booking appointments and coordinating with us and the team.

The most relaxing activities for me are mindful meditation, being in nature, listening to music and making art.

For someone new to caregiving I would say that their first job is caring for their loved one and their second job is self care. Self care is a whole other course that they need to research and learn. They will get through it no matter how difficult it can be.

Moll
7 Posts
My husband is now 16 days post treatment. He had 6 rounds of chemo and 35 radiation treatments. He still has the NG feeding tube because he is still unable to swallow food (even his saliva is a challenge). Yesterday was the first day that he was able to take in the minimum recommended amount of food via his tube so I am hopeful that he can continue with this intake. The burn on his neck has finally healed and his eyes are slowly starting to have their original sparkle. Where have I been in all of this - as his caregiver? I’ve been on hyperdrive, with my mind never relaxing, always jumping to anticipate needs (ie meds, comfort, food, pain, appts, etc). I stopped eating, showering and became invisible in my own life. I knew better, but I just didn’t do anything for myself. Now I am starting to feel something more than fear, responsibility and adrenaline. I’ve gone for (short) drives (to car wash, to Dairy Queen drive through for a treat for myself). I’ve started making cooked meals for myself, and dressing in different clothes. (I’ve had a ‘uniform’ that I’ve worn for the last 2+ months: old oversized brown sweatshirt with yoga pants... every day). I am still afraid that his cancer is still there or that it may come back again but I have to do more than exist. Your stories and these forums have helped me to feel part or a community and less isolated. Xoxo
Charlie1
24 Posts

Hi everyone,

I am a caregiver to my amazing loving, kind, and patient husband who has stomach cancer Mets to his lymph nodes and to his pancreas.

As a caregiver are you able to find time for yourself? Do you have additional help?
No, not really my husband is in so much pain and things seem to be getting worse that I am afraid to leave him most of the time. I am working and usually sit in my little office researching and wondering how I can help him

What activities do you find relaxing?
I find physical exercises like walking and Zumba the most relaxing. Sometimes I put the Beatles on and just dance.

What would you tell someone who is new to caregiving?
Make sure you take care of your mental health and have someone that will listen without trying to fix it

I am truly sorry if my post seems on the negative side but things were good and now it is like being hit by a brick and I am shattered.
As a caregiver are you able to find time for yourself? Do you have additional help?
  • I am a caregiver to my 75 year old mother. She just resume chemotherapy this week as her last go around in late September was terrible - chemo worked, but side effects put her in hospital for 2.5 weeks with 2 blood transfusions. I honestly find it hard to take time for myself - not sure if I am the only one who feels guilty....I went out the day before her chemo this week for a couple hours as I was not sure when I would next be able to go & be able to relax when I am away. Last time when I was out to do an errand, I had to race home as I called to check on her & she could barely hold the phone or talk - she was ok, when I left, so I am a bit on edge with her chemo resuming. I know I need time for myself, but I find it hard.... I do not have anyone else who can help out - family close, but do not help. My family who feels terrible about not being here & wants to help, does what she can & checks in constantly, but is about 5 hors away - honestly, I feel bad for her, because she feels so bad that I am alone - she does everything that she can from a distance. I have some friends that brought me a couple meals last time & that was so very kind of them. I also have friends that I can confide in, which is a big help.
What activities do you find relaxing?
  • I enjoy gardening, so I am glad spring is here & I can spend sometime outside. I also love spending time with my dog. I find fishing so peaceful & relaxing.
What would you tell someone who is new to caregiving?
  • I honestly do not know as I am new to it myself.
Cynthia Mac
3080 Posts
JoyinmySoul‍ , we can “guilt” ourselves about self-care, but that takes up valuable time that we could be (and should be) caring for ourselves.

Here on the site, there are two sayings: One comes from the safety talk on airplanes: put on your oxygen mask before you try to help others; and the other one is “you can’t give someone water if your own cup is dry.” Too often caregivers give and give and give until they fall ill themselves. I used to work for a corporation that operated long term care facilities, and it was often a topic of discussion at meetings I attended.

Caring for yourself can be as simple as a long bath while our “patient” is napping. It can be pausing to take ten deep breaths, or chatting on the phone with a friend — whatever you can do to keep your own batteries charged up a little.

I love Charlie1‍ ‘S suggestion of cranking up some tunes and dancing. I’ve done that recently, as I was “digging out” of the aftermath of a loss.

My usual advice for someone new to caregiving is to be specific about what you need. Rather than say “I don’t know how I’ll keep the yard up,” say something along the lines of, “I’m worried about getting the gardens raked off, so if you have some time this weekend and could come over, that would be helpful.”

Another “top tip” I often give is to get organized: set things up so your “patient” won’t be looking at cobwebs while they’re recovering; move furniture to make it easier for them (and you) to move around or have a nice view; create a system so that everyone knows where to find things (even paramedics), whether it’s a calendar with appointments on the fridge, or a list of medications the “patient” is taking.
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