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How can a remote caregiver stay strong?

How can a remote caregiver stay strong?

Posted by JoBruin on Jan 31, 2019 9:53 am

My mom is 76 years old.  She lives with my father and my brother in another city.  She was first diagnosed with oral cavity cancer III last May and had surgery.  The cancer recurred last Dec and probably has spread to her lung.  She had one chemo before Christmas and is still recovering from various life-threathening side-effects in the hospital.

My worries and rumination of unrelated events worsen.  Sometimes I have trouble getting out of bed in the morning.

I have tried lifestyle changes to manage stress, e.g. eating right, walking despite the bitter cold of toronto winter, meditating, sleeping well.  However, I feel like we are fighting a losing battle against cancer.  I tell myself to accept the possibility that she could be gone anytime, then everyday she is alive is a blessing.  This makes me feel better for a few moments.  Then I got stressed out again.  I am wondering how to think differently about this situation that will give me strength for myself and my family?  Thanks.   

Re: My mom has oral cavity cancer IV. How can a remote caregiver stay strong?

Posted by ashcon on Jan 31, 2019 12:03 pm

Hi JoBruin‍ 

I'm glad you found us here and I hope you are perusing the many helpful posts from others in this discussion group, Caring for Someone With Cancer.

You are taking the right approach by (1) knowing that your Mom's health condition is impacting you and how you are living your life, and (2) wondering how to think differently about the situation that will give strength to you and your family.
The ticket here is to know that you are not alone, nor are you anymore removed from your ability to help your Mom and your family just because you are in one city and they are in another.

You mention that the cancer has 'probably' spread to her lungs.   What makes you say this, and is there a way to find out for sure?  Having this knowledge will help you and yours have a better understanding of exactly what is on the table here and what is not. This will help remove fears of unfounded or unconfirmed information.

In this resource booklet, Advanced Cancer, there is advice on long-distance caregiving.  There are also some fantastic resources listed at the back of the booklet. 
You are also very fortunate to be in Toronto (despite the bitter cold!) because of many fantastic resources available for caregivers, like Gilda's Club .  My sister used Gilda's Club to help her manage the double whammy of two cancer diagnoses in our family that happened at the same time (My Breast Cancer + our mother's Esophageal Cancer).  

It probably wouldn't hurt to do a little research on oral cavity cancer, and on how to manage the side-effects she has encountered, if you haven't done so already.  Just showing your mom and your family that you are knowledgeable on what she is experiencing on a daily basis, demonstrates a great caring on your part. 

You may feel lost right now in how to deal with this and how to help, but you will find your way.  Stay in touch and keep talking about it - here on this site and with those in your life who have your back and your heart.

Re: How can a remote caregiver stay strong?

Posted by JoBruin on Jan 31, 2019 1:53 pm

Thank you ashcon for the information.

Regarding "You mention that the cancer has 'probably' spread to her lungs.   What makes you say this, and is there a way to find out for sure?", PET CAN suggested probable lung metastasis.  Family members who live with her chose not to have lung biopsy or any other painful procedures performed on the 76 year-old with advanced cancer.  I concurred.  It was a right decision because the paliative chemo she had before Xmas almost killed her due to diabetes complications and low blood palettes.  

Re: How can a remote caregiver stay strong?

Posted by ashcon on Jan 31, 2019 2:48 pm

Hi JoBruin‍ 

Ahhh, that makes sense. 
As you said, then, it is possible that you are all fighting a losing battle against cancer. If that's the case then it's a question of making sure that she is making the most of her life, and you and your father and brother are helping her to do that.

But you must create the space and the permission for you to take care of yourself as well.  Do you have a network of support people in your life to help you through this?

To what extent do you get to talk with your mother, or to visit with her - if that's feasible?

Aly‍  may be able to offer some insight as a caregiver for her mother who battled cancer. 

Re: How can a remote caregiver stay strong?

Posted by Aly on Feb 1, 2019 12:28 am

Hi JoBruin‍ , my name is Aly, I was a caregiver for my mother who had non-hogdkin's lymphoma. I understand how difficult it is to keep positive when someone you love is so ill.

From what you've written it sounds like you are trying to not only manage stress but experiencing some anticipatory grief as well. You're already doing the biggest thing to help yourself remain strong - reaching out to others. Gather those who can support you and keep you lifted. We're here to share our experiences and make sure you're not alone in this.

Don't be hard on yourself, you're going through an incredibly difficult time - allow yourself the time you need to express the emotions you are going through. Listen to your body - if you need to sleep, sleep. If you need to cry, cry and so on. Identify something that lifts your spirits and gives you energy - even if it's for a few moments.

My mom also had metastasis (to bone) and had difficulties with palliative chemo due to diabetes and non-alcoholic cirrhosis of the liver. At this time, quality of life is more important than quantity and it sounds like you and your family have made the best decision in giving your mom quality of life.

Try to make time with her - over the phone, Skype, face to face if you can. Know that special moments with her don't necessarily have to be something over the top, the best memories I have of my mom was playing scrabble with her or binge-watching Bones together.

One of the best stress relievers I found was talking about what I was going through as a caregiver. I posted here on the website, spoke with family members, Skyped with friends and journaled a lot. It helps 'bleed the poison' every time you let it out.

I want to wish you the best, and if you have any questions or just want to chat - I am here.



Re: How can a remote caregiver stay strong?

Posted by Cynthia Mac on Feb 1, 2019 10:42 am

JoBruin‍ , I’m chiming in, too - to address a couple of points that Aly‍ and ashcon‍ made.

A bit of my back story: I lost my 76 year-old mom 18 months ago, suddenly, due to an unknown heart issue. 

Aly talked about memories not having to be “over the top” and I have an example: The week before we lost Mom, I had popped out to her place, and, on a whim, took her with me to the framing shop to pick up a couple of pictures I had done up. It was such an impulse thing, certainly no big deal at the time, but I’m really glad I did it!

I agree with Ashcon that you are going in the right direction with the steps you are taking toward self-care. Whenever you do something that makes you feel better for a few moments, you’ve improved your situation for a few moments. You can try again in a few more moments. So do keep doing what you’re doing!

If journaling helps you (it does me) go for it.

I am concerned about one comment into your original post about having trouble getting out of bed in the morning. That could be a sign of depression, which would be worth discussing with your doctor.

Whether we lose a loved one in an instant or over a long period, I’ve learned there’s no easy way through it. But, we can be there for each other. I join with the others in saying if there’s anything I can do to help, just say so.

Re: How can a remote caregiver stay strong?

Posted by JoBruin on Feb 1, 2019 8:16 pm

Thanks Aly and Cynthia Mac for your kind words and advice.

Re: How can a remote caregiver stay strong?

Posted by sher on May 11, 2019 11:10 am

Hi JoBruin‍ ,  My heart goes out to you and your struggle from afar.  I lost my sister to serous uterine cancer in January.  She lived quite far away from me and I was constantly struggling with living so far away and thinking about my sister all day, every day. This site was a very important place for me to reach out and post updates on her progress and our struggle.  Please feel free to reach out to any of us at any time.  I felt that one of the best ways for me to deal with my constant worries was to keep talking to people about how isolated I felt from my family and how helpless it felt to be so far away.  The important thing was to make sure I did not withdraw and isolate and stop sharing feelings. I don't know if this would be possible for you but a family group text with daily updates was probably THE most helpful way that I felt connected.  Even if there wasn't much new information, I felt supported because we were all in this together.  People shared pictures of their experiences with my sister and that helped too. Hang in there and reach out any time.  Sher