Primary Caregiver for a loved one with cancer

[Eileen A. King]

Is there anyone else out there who is dealing with thHe's in remissione stress of being the primary caregiver of a loved one with cancer or other life threatening illness.
My son has a rare form of Leukemia, he's 15 and has been on chemo for 3+ years and still has a year to go.
How do you deal with the daily stress or doctor appointments, proper diet, having no other social life and watching someone you love dearly battle for their life? AND still try to be upbeat and maintain a sense of humor?
Any input would be greatly appreciated!!
Thanks and thanks in advance.
Luv & Hugs,
Eileen
from South Jersey

[Elizabeth Fletcher Brown]

Eileen,
My heart goes out to you. That is a challenging situation.
I have a colleague who has gone through a similar situation (looking after her mom for a long time) and is writing a book about it. Let me see if I can interview her for the site. She has a lot of insights resulting from her experiences.
I'll let you know.
Meanwhile, does anyone else have any suggestions for Eileen?
Elizabeth

[Eileen A. King]

Thank you Elizabeth;
Any input would be helpful.
I chose to go to school for massage therapy because I see the benefits of the massage when I just gently rub his back while he's getting long periods of chemo. He feels comforted and seems to be less nauseas because he's in a more relaxed state. So many parents in the Oncology Transplant Ubit see how well he handles the chemo and start asking me all about massage and what I'm doing because it seems to be making a positive change, we've been in this battle for 3 years, it seems like forever. We have another 8 months to go until this protocol is finished.
Even though the school is only 2 mornings a week, sometimes I feel guilty for leaving. And this is knowing that my son is proud of what I'm doing because he's told me a few times, how proud he is to see me go to school so that I can try to help not only him, but others too.
I want to help so badly it hurts. And God willing when he beats this cancer I want to move onto helping all of the other cancer kids out there. Lord knows, there are too many.
But I know that in order to help him to the best of my ability---I have to help myself also...or I'll fall apart at a time when he needs me the most.
I'd just like to know how other people manage to take care of all the responsibilities that go along with caring for someone with a life threatening disease and still manage to have any time left over for themselves. Even just a little bit of time. And can this be done without feeling guilty? lol
O-K---I didn't mean to go on for so long, I mainly wanted to thank you for responding.
Thanks so much,
Eileen
How does your friend manage with the responsibilities of taking care of her mother and still find the time to write a book?! This is very encouraging to hear.
Anyway I want to thank you for taking the time to post a response, it brightened my day tremendously.
With many thanks,
Eileen King

[Renee]

Hello Eileen,

It sounds like you are a loving and caring mother, good job. It also sounds like you may not have a strong support system in place to nurture you through this process, I hope I am wrong about that. Just know that you deserve to have support and encouragement, what you are going through is not easy, but it is imperative to refill your own energy so you can continue to lovingly support your son. Part of your job is to find/make the time and the support system to allow yourself to be nurtured.


One of the things that is so profound about massage therapy is the idea that it allows the client TIME just to be. We spend so much of our time trying to contain all of our fears our hopes and our dreams not to mention the physical trauma's like stubbed toe and broken arm we got when we were 10 then it all gets compounded by the suffering of those we love it is no wonder you feel overwhelmed.

One of my teachers Alana Shaw an improv dance theater/psychologist talks a lot about the concept of moving and breathing, becoming aware of the breath and just starting with the left foot and wiggling it around a bit, shaking it out all the way up to the hip. Just returning to the breath and switching legs, moving from the legs to the shoulders, elbow's, wrists and fingers, just letting each joint shake around, and enjoying the sensation of the newly flowing energy. wiggle your butt, shake your hips, bounce up and down, rotate your head, puff of your cheeks and squint your eyes. See how many different ways you can move your body, flowing loving, nurturing movements, aware of your breath filling your body and nourishing your soul. This process only takes a few minutes and it can change the next few hours of the day for you. You can repeat as necessary.

In the mean time, reach out to your community, your church, ask them to be with you or spell you from direct care of your son, so you can take a walk in nature and breathe fresh air filled with the scent of life and feel the sun on your skin, warming and waking you.

and....shop around for a great massage therapists who has good boundaries, who doesn't want to fix you, simply hold you in loving space where you can unwind from the pain of anxiety and grief. Our job as massage therapists is to support you in your own healing process, your spirit knows what it needs if only you listen with an open heart

I hope this helps,

Renee

[Rodney]

Hi Eileen

I feel for you and will say up front your task is a difficult one but not imposible.

I do not profess to know all nor that I have been there, but would like to tell a little of my experiences.

My gran, a monument of a woman, aged 98,slight skincancer, recently passed away.
We, my life partner and I saw how a woman deteriorated from a stately, powerhouse down to a child, unable to even dress herself or even do common hygiene activities.

I do not profess my ways are correct nor the only way but only that we survived.
I am extreemly fortunate to have the girlfriend that I have, she gave up her working life to concentrate on caring for my granmother when she became unstable in walking and caring for herself while I was able to continue to work and provide our normal needs.There were times we would get angy with each other, times either of us would get angry at my gran and times we both were angry with my gran at the same time.....no rose garden life for us.

What I've learnt in these trying times are : It is imperative to let your forgiveness explode over your anger faster than your anger exploded over whatever....the saying "forgive and forget" had a life uncommon to this world....get that right.....and your burdens will be bearable.

Note that I'm not stopping you from getting angry,only let your love return fast. If you need to vent your anger...get a punching bag....when you turn your back on the punching bag....your love must be in full control. Never stike a living being, allways an object set to vent your anger on.

Remember to forgive yourself the minute you have forgiven those you got angry with. Talk to them before the anger comes and tell them that at times you will get angry, but that it does not mean you love them any less, you will love them allways.... at least then they can defferenciate between your anger and your love,knowing they will not be hated.

Get to realize the time you spend with whomever you are looking after,in your case, your son, is valuable.... do what you want to for and with him now while he is alive. Flowers on the grave mean nothing to him, a day at the ballpark or icerink or even just in the park is of much grater value to him and to you.

His illness is not his life only part thereof,let him live and sometimes forget his problems .... in return for that, you to will forget his problems and build a father-son relationship.

You have the right to schedule appointments to suit you....you tell the Doctor when it suits you, speciffic times set by the doctor can be varied apon to I would think up to a week, but even in a 24 hour period you can decide what times suit you. By all means discuss it with the doctor, you will find them accomodating if they have any heart left in them.

I tried, not allways successfully, but still tried to give ourselves "Time-out" activities.... We would go out when the family was settled down, giving other members of the family minor responsabilities (we even asked friends,not related, to stand in for us at times).... Just get away.....come back tomorrow and face the wall of obsticles again....

Right here you have taken the first steps to my next point. get a friend, a stranger, a anything to talk to ....just knowing there is someone out there that can listen, can encourage, can .... sip a cup of coffee with you.... already makes it just a little easier for you.

By all means.... come back to me and talk, I will listen, that is the least I can do, for I know where you are coming from.

Rodney