Caregivers need support too

I sometimes wonder how intensely people worry about me when it comes to my health. Often, others don’t want to show us their real emotions during cancer – and even during post-treatments – so as not to overwhelm us. I am so caught up with my own cancer mess, finding ways to cope and moving forward, that I forget that others around me are also trying to do the same. I am referring to those who hold our hands when we walk the cancer path. We often lean on them, but who do they lean on?

I will always have so much respect for caregivers. It’s a very difficult job and, when someone commits to doing it, it’s not only a sacrifice but a big act of unconditional love. Sometimes the commitment of being a caregiver goes beyond cancer treatments. My fiancé was and continues to be my caregiver.

I often wonder if caregivers get dismissive comments about their emotions and fears, the same way we cancer patients do. My guy does. His loved ones have wondered why he – we— haven’t fully moved on from this cancer mess when treatments are now behind us. But I am not done with cancer and he continues to be my caregiver.

Unless you’ve been a caregiver, I am not sure you fully understand their level of commitment and fear, because they’re scared too. Lately, I’ve been trying to ask more about my partner’s feelings. I don’t recall us ever talking about his emotions because we’ve been focused on my well-being. What I know is that he hasn’t moved on after my cancer diagnosis because he can’t. He struggles the same way I do at times. Every oncology appointment I go to he experiences anxiety with me.

He hasn’t been himself for quite a while now but neither have I. What really prompted me to question his state of mind was something that happened in the middle of the night while we were away recently. We were trying to sleep but the room was chilly. I was too tired to move. He covered us both with the blanket. I still wasn’t moving but I was awake. I noticed he gently touched my shoulders as he leaned forward to see if I was awake. When he saw I didn’t move, he placed his fingers in front of my nose to feel my breathing. He did this for a while too, to make sure. I eventually moved so he would know I was alive.

This made me reflect about his fears and how he really feels about being with someone who has been diagnosed with cancer. Although I have my assumptions, I am not sure I fully understand the complexity of his emotions because I am too busy trying to understand my own.

I worry about his state of mind because he basically doesn’t have anyone to talk to. I am lucky that I have other patients who provide me with a lot of support and understanding. I am also not afraid to reach out but he is the type to keep things inside which can be unhealthy. Could this be a testosterone effect? I don’t know but I need him to be mentally well. I may need to help us reach some level of confidence.

Thinking about my partner’s fears, I’ve come to realize I didn’t know them all – and how intense his feelings were. He is the type to not want to burden anyone with his problems but this isn’t helping us.

I’ve also realized that I have abandoned him in some way. I have even suggested he doesn’t have to be part of this cancer mess if he chooses not to be out of my own frustrations. These words hurt him.

I feel guilty because I am not sure I am there for him as much as he is there for me. I depend on him emotionally and he is so focused on me but I haven’t been able to offer the same level of support. I sometimes hide through my blog and my writing because I guess in a way I am also scared to reach a level of normalcy and get too comfortable in a situation that isn’t promised. Ever since my cancer diagnosis, I am afraid to hold on to anything too tightly. And I am afraid of what might happen to my guy, holding on so tightly to something that may not be there forever.

My guy is afraid of losing me. Everyday. I wasn’t even noticing his deep fears. He says that even when we are home together, I go away. I am often absent from him. I hide on my computer. He is right. I do. This isn’t helpful to our relationship. After some reflection I’ve decided to try to not be afraid to live a normal life with my partner. To hold his hands the same way he held and continues to hold mine.

Do you currently have a caregiver? What things have you done to support your caregiver?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Coping after cancer, Reflections, Support and tagged , . Bookmark the permalink.

34 Responses to Caregivers need support too

  1. This is a tough subject for me because having a caregiver during cancer made me feel guilty, because I feel like I “owe” anyone who ever does anything for me–even in a situation like cancer, in which I was unable to to do for myself.
    I’m in a situation now as a secondary, paid caregiver. My pet sitting business morphed this year into focusing on one client with Chronic Lyme. (I still am the primary pet care-giver.) I provide support for her husband who is the primary care giver. It is similar and different from CancerLand–biggest different is chemo is given at a care center vs we are administering IV drugs in the home–never before have I appreciated the automated IV machines I had during infusions, now that I do it manually–getting the drip rate right can be a PITA (thank goodness for metronome app). But it can be frightening at times, to see someone you care for so very sick, to think about things like–“is this situation bad enough to call the doctor”. There was an extremely bad day a couple of weeks ago that was very unsettling. In some ways I’ve learned even more about taking advantage of “good days” (days with a modicum of energy to go shopping, even just a mile away, for example) than even when I had cancer.

    • thesmallc says:

      I can relate to what you said about feeling like you owe people something. When I chose my “team” during my cancer mess I thought about that a lot. I basically only had my mother and my guy take care of me because I felt they were the “appropriate” people to be involved (I didn’t want to deal with cancer alone either).I was self-sufficient for most days so I wasn’t too much of a pain except when I was obligated to eat or to exercise. But other patients have it tougher with treatments and the level of responsibility becomes more challenging and overwhelming for the caregiver, including knowing when to make the right decisions. It’s very kind of you to do this kind of job which I am sure can be very rewarding as well.

  2. It’s so important to realize how much our caregivers actually do for us. And I think sometimes they try not to show their own emotions because they are supporting us but that has to be hard on them. My husband has been with me since before my diagnosis, several years before we were married. What a difference it makes to have someone in your corner when you’re going through cancer stuff, day in and day out. Wonderful post!

    • thesmallc says:

      Lisa, I think often caregivers are invisible. People don’t pay too much attention to them and they deserve to be acknowledged and appreciated by everyone. I am glad your husband has been there for you. It def. makes a difference when you have someone caring for you. Some patients don’t have that and it’s so sad. You and I are very lucky.

      Thank you for reading and commenting on this post.

  3. The Accidental Amazon says:

    This is so touching. I just want to hug you both. xxoo, Kathi

  4. Amanda says:

    Great Post and I often think of my own man Sam and wonder how I can make things a bit better for him. He does everything for me, worries about me just like your wonderful man, checks to make sure I am still alive etc. Just now, he cooked our dinner in surgical gloves and mask because HE has a stomach virus and doesn’t want me to get ill from it.
    My man isn’t much of a talker but once in a while, he’ll chat to me about how he is feeling but I have to trust that he is doing ok. It is hard to make someone talk about how they feel if they aren’t big on talking.
    I, personally, could not be going through this with the ease I am without this man of mine. I get the guilts from time to time but I know I have the best person beside me.
    Hugs from Australia xx

    • thesmallc says:

      Your Sam is so good to you. I am happy you receive that level of support from him. Those little details are so important — how much they pay attention and how they show their love. I sometimes don’t know how my guy feels but I see he struggles emotionally. Because I put myself in his shoes and try to imagine it was him going through cancer, and my heart stops. It is painful with just imagining it. But we are living it, with me, so I know he has a hard time sometimes. Like you, I try to help by trying to live a normal life. We cope as best as we can and take one day at a time.

      Big hugs to you!

  5. Carrie says:

    This is a great post. It hits home in ways I’m not sure I’m ready to comment on yet, though. But, beautiful writing and thank you and your fiance for sharing your experience.

    • thesmallc says:

      Thank you for reading, Carrie. It took me a while to share my thoughts on this subject so I understand where you come from. It is a hard situation and it takes time to adjust. Hope all is well. xoxo

  6. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  7. Brooke says:

    Thank you so much for writing what, I’m sure, many of us are thinking or feeling. I remember early on I asked a good friend of my husband’s to “just check on him for me” from time to time. Take him out for a beer on my non-chemo weeks and just be guys. Even if he doesn’t want to talk about me (and a huge part of me hoped he didn’t!) and only talked about baseball or football or the latest work drama. I think that part of me wanted someone else to take responsibility for my husband’s emotional well being because I was so scared of what I would hear if he said it out loud to. Now, post-treatment and post-surgery, we’ve had those talks and we’ve both acknowledged how we’ve changed. But I also feel that cancer did an amazing thing for my marriage – we are beyond close now. Before we were just doing our thing…now we really appreciate each other (even when the other one is driving us nuts!). Thanks again for sharing…it’s definitely not easy. XOXO

    • thesmallc says:

      I think this is one of the challenges we face, the fact that my guy doesn’t connect with anyone. It is so important to continue living life as normal as possible, for both the patient and the caregiver. I am glad you are done with your treatments and that your relationship is stronger. I wouldn’t give the credit to cancer though but the love you both have for each other. May you continue to do well.

      Thank you for reading and commenting. xoxo

  8. Douglas says:

    Thank you for sharing. I do it because I know she would do it for me, without question

  9. Terri Coutee says:

    A heartfelt post indeed and yes, a difficult one to write about. I have pondered writing about this topic myself but my caregiver/husband is an an extremely private individual. I know he has feelings about all this but doesn’t share because that’s his nature. But, as you said, you wonder how it affects them and what goes on in their minds and what you can do to make it easier for them. The “C” topic is off limits most of the time between us and I respect that because he has lived it twice now! And so, like you, I blog, outreach and educate others on how to navigate this process. I wonder if there are any “caregiver bloggers” out in the cancer world? I’m sure there are but have never looked. Thanks for sharing a difficult topic.

  10. thesmallc says:

    Hi Terri, I know of some caregivers who share their stories through their blogs. In terms of support, I follow http://thecaregiverspace.org/. Whenever I find words of encouragement or good tips for caregivers, I share them with my guy. I am sorry your husband has dealt with the cancer mess twice — they are so involved that they are in it too.

    Writing about my caregiver and sharing my thoughts with him have helped us both. I think it’s important to let those feelings out because it allows some level of healing. It’s great you are sharing your story which I am sure has helped many.

    Thank you for reading and commenting.

    • Terri Coutee says:

      I would love to hear from you. I am an advocate and educator for all choices of breast reconstruction. Women have the right to be educated about their choices. I had a good one so I’m paying it forward to educate others. I’m glad we connected.

  11. Amari says:

    Thank you for recognizing the stress mixed with love that we feel. I am a caregiver too. Not for a cancer patient but for someone with another serious chronic disease. I wake up every night and make sure she is still alive. Every night. Sometimes I touch her lightly or shake the covers so that she will move or sigh in her sleep. Every night.

    thats what love is. Thats what commitment is.

    • thesmallc says:

      I am sorry your love one is sick. I am glad she has you. It is such a blessing to have someone like you. Not everyone can do this job and I feel most people do not understand the challenges that come with such a role. And you are so right, the commitment is a proof of love.

      I hope there are more easy days than hard days for the both of you. xoxo

  12. Tarina says:

    Thank you for your thoughtful words . I am my younger sisters Caregiver . She has triple negative breast cancer that has metastasis to her lungs . I do struggle with anger issues in my head about her having cancer . I was also my mom’s Caregiver for 4 years as she had breast cancer and passed away in 2008 from her cancer after fighting a hard fight. it’s so extremely hard to deal with everyday going to Kaiser twice a week sometimes 3 times a week ! But I have to say that I love my sister dearly and I will always take care of her and I know she is very thankful for me and all I do for her ! It’s very hard to be a caregiver specialy when its family .

    • thesmallc says:

      Tarina, I am very sorry about your mom and your sister.

      Your sister is lucky to have you. I was a caregiver for a family member and it was emotionally overwhelming. But like you, I was committed to doing it because I loved her. I hope your sister is getting additional support and that you are getting some help/support too. I follow http://thecaregiverspace.org/ and they sometimes have helpful information for caregivers. You can connect with others as well.

      Wishing you and your sister more easy days than hard days.

      Thank you for reading and commenting.

  13. Ellen Cotto says:

    Beautiful & very helpful! My Love one passed in March of this year. I run a support group & we strive 2 B positive @ ALL times!! But due to my Faith , I believe I was in denial. & have been dealing with such an emptiness!!! 2&1/2 years everyday w/ someone now gone, trying to get back to be able to help someone else. But I also need that healing time!!! Thank U!! My 1st share 🙂

    • thesmallc says:

      Ellen, I am very sorry for your loss. I have been dealing with grief for 18 years (my grandmother who was also my mom). I say you take the time you need to heal. I try not to suppress my feelings/emotions. It’s a process and some people may take longer than others. It is great that you run a support group to help others.

      It’s OK to be in denial sometimes — at the time, that’s the tool you needed in order to cope with that situation. But you described it as “having faith” which is also a helpful tool to have. We do our best and hold on to things that help us keep going. I wish you well.

      I appreciate the share. Thank you for reading and commenting.

  14. Sue Zasadil says:

    my husband Tom, is a 4 year kidney cancer survivor. He’s had triple bypass heart surgery and many other medical problems. We have been together 35 years. I now have Breast cancer and he is my rock! We have both been caregivers to each other and I thank the good Lord every day for bringing us together. Thankfully we have an extended family and he is getting some wonderful support from our family members. I try not to complain too much. I’m afraid to worry my children. But Tom is always with me with his level headed responses and jokes that keep us grounded. I only hope I have been in tuned to his needs since I’ve been his caregiver also and know the frustration of not being able to make the pain go away. The Lord will always guide us tho. I’ll just trust in him! Thanks for all these posts everyone. It all helps!

    • thesmallc says:

      Sue, I am glad you have each other to lean on. I am sorry you both had to experience this mess but the good thing about these experiences is that you both get it. It is great to be connected with someone because you’ve both walked the “same” path. One of the challenges a caregiver faces is trying to figure out what the right answers are — although there may not always be right answers. I am happy your husband is getting additional support. You both need it.

      Withing you both many more years together. Thank you for reading and commenting.

  15. Andy L says:

    I am a caregiver for my fiance, it was and is very hard, but the one sentence I really agree with is the one about unconditional love. And now that we have gotten past all the treatments and she is cancer free, there is still need for constant love, she has changed quite a bit over the last several years. She is always scared and always thinking about it coming back.
    I do not have anyone to lean on, so I lean on my love for her.

    • thesmallc says:

      Andy, those are beautiful words you just said — “you lean on your love for her.”

      Many of us patients never really “move on” from cancer so we try to adjust to the new life after treatments. Many of us aren’t the same because we have lost our sense of self (and somewhat our sense of belonging too) so it is important to continue to receive the support from others. Not everyone can continue to provide this level of support, but for those who do, like yourself, we are very grateful for it.

      Wishing you and your fiance many more years together.

      Thank you for reading and commenting.

  16. When I have the hearts I will read the entire post as well as the comments. It just rang so many bells in my mind that I am overwhelmed. Thanks for writing this post (even though I only have had a glimps of it at the time being…). The part that you wrote about your bf checking your breath just brought tears to my eyes. I have great respect for caregivers and I fully agree with you that what they have been doing is amazing and require a lot of guts (and support and appreciation). Thanks again for writing this. I think this post should be shared as much as possible and the issues and emotions of caregivers should be acknowledged at a broader sense. Who knows maybe one day there will be adequate care and support programs widely available for them.

    • thesmallc says:

      It would be great to be able to offer support programs to caregivers. They experience trauma and stress just like the patients do. They too deserve some attention and understanding — it’s a tough job all around. And of course, I feel lucky to have a wonderful caregiver. I would care for him the same way he does for me.

      Thank you for reading and for your kind words.

  17. Susan says:

    Great post. I’ve been on both sides. Because I am a nurse I am a designated caregiver by choice and it falls to me to be in charge when my parents and in-laws are in need. I saw my dad through his cancer treatment and hospice care and was at his bedside when he crossed over, and I am currently, and have been for the past 6 years, full time caregiver to my 89 year old mother-in-law with dementia who lives with us. I know the universe has given me this task to teach me something that I suppose I haven’t learned yet because I’m still doing it. I am truly grateful for the opportunity to learn the lessons of patience and how to keep my sense of humor (example: She said to me once “I am finished on the bedpan” and I looked at her and said “You’re not on the bedpan.” We both couldn’t help but have a good laugh)

    It’s life…just do it.

    • thesmallc says:

      Susan, you def. need a lot patience to do this kid of job. That’s what makes it challenging for many people. It’s also traumatic for some.The fact that you are already a nurse tells me you possess a lot of kindness and patience. (I have a lot of respect for nurses.)

      I am sorry about your dad. Regardless of your skills and knowledge, this must have been difficult for you. I hope things aren’t too hard with your mother-in-law. You are very kind to take on such responsibility and I am sure your efforts are appreciated.

      Thank you for stopping by and for commenting.

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