More on Caregiver Support

This last weekend, I was in Wisconsin, giving a talk about coping with advanced or metastatic breast cancer.  I spoke a bit about the need to take care of our caregivers.....they have needs, and are being drained emotionally and spiritually as well as possibly physically (depending on the situation).  After the presentation, one of the ladies in the audience asked if there were any support groups for caregivers locally.

The city I was speaking in had a population of 80,000 and presumably would pull from the outside area as well.  However, the host facilitator said that no, they didn't, although caregivers were encouraged to attend the support groups with their patient.....

That just isn't a good idea.  They need their own.  I suppose that it is a good stop gap measure....but to my mind, the patient AND the caregiver need to have an outlet where they can talk separately about the issues they have....Just as when I get together with my quilting friends we sometimes grump about the silly things our spouses have done....which is a way of getting it out of our systems without taking it out on the spouse.

Caregivers and patients do not necessarily have the same issues.  Caregivers may be  afraid that they are losing their patient.  They may be  afraid that they aren't doing a good enough job, and they also have a lot to learn in a short amount of time.  They need to take care of the needs of their patient as well as other standing obligations, whether it is job, family, household, as well as tending to their own health and person.  Sometimes they are taking on several new roles.

I wish that cancer centers and cancer support groups would take a stronger look at this.  It doesn't even have to be a group specific to a single type of cancer....but I think that it is needed....

(The above photo is an image of my Great Grandfather, John Robert Ross with his first family.  His wife, Isabella McBain (or McBane) died, leaving him with several children to take care of...he ultimately remarried, to his also widowed housekeeper who had three children of her own...going on to have a blended family).  I am a descendant of the second Ross family.)

Caregivers

Not too long ago, I read a post someone had written taking umbrage with the viewpoint that sometimes the caregiver of an advanced stage or metastatic cancer patient has a difficult time.  I agree that it is the patient who is staring death in the face and has to deal with the personal changes and personal hell of getting treatment.

But, I also think it is difficult for those who love us and are watching us go through this, and wanting to help...but not knowing quite what to do.  Partly, I think it is because there isn't much of a support system for the caregiver.  The attention is focused on the patient...and rightly so, but that doesn't make it easier for the caregiver.

Don't get me wrong...some spouses, significant others, etc. can be....well....real douche bags and idiots.  They take their fear out in the form of anger at the patient....or meet it all with denial, expecting the partner to continue to do everything as they have before diagnosis and treatment.

My own experience has been a husband who tries to be supportive but is scared spit-less ...who sometimes cries because he knows that in all likelihood  I'm not going to pull out of this one and time is limited.  Not to mention the other stuff he has to deal with...no job...how are we going to pay for this....a kid in college....blah blah blah.  I have taken the viewpoint that there's a heck of a lot I can't do anything about...so while I am concerned about those things....I'm not going to spend any time worrying about it.  Maybe it is silly...but why bother? I can't hire him.  I can't do anything about any of that....but I can try to straighten out my own messes, sell stuff on ebay, etc.

Sometimes I overhear things in the waiting room in the cancer center.  Some of it is really touching.  A couple of weeks ago, a woman who had gotten some treatment at the same time I had the week before was there with her husband to get her blood work done.  While they were sitting there, the husband was trying to figure out where he was going to take his wife....he was talking to her about Lourdes, or to Fatima, Portugal to get help for her....She was largely ignoring him.  It was obvious to me that he felt helpless and didn't know what to do, so he seized on what he could.....asking for help from God at the two shrines.  She was rather irritated with him...and was speaking rather sharply to him.

I felt sad for both of them.  We are in uncertain areas....it is hard to know what to do...and whatever we can try seems to be worth it.  I often get notes from friends or acquaintances with a new miracle juice, diet, or cure.  I try to look at all of this as what it is...people who want to help...people who love me and want to see me well.  And that's a good thing....

Caring for the Caregiver

I've often thought that the caregiver, or significant others of the cancer patient is often overlooked.  While the patient has a whole cadre of people who are actively fighting the disease, and has assistance, the significant others, the care givers, and often the immediate family doesn't have the support system nor the understanding that the patient has at their fingertips.

The caregiver often has to care for a very sick individual, making sure that they pick up the daily chores and responsibilities that the patient is not able to do.  They also worry, and often feel the need to make sure they stay positive while watching the ones they care for struggle through the side effects and onslaught of disease.

Dave Balch has written quite a bit on this.  In fact, he is the author of Cancer for Two and has written many articles and columns as a result of his being the caregiver during his wife's cancer.  You can read his biography here. He has also made available a free newsletter called "Caring and Coping."  He started the Patient Partner Project which has a website, and yes, you have to sign in, but there's lots of good information and assistance in dealing with the issues that those of us who are in the struggle face.  www.patientpartnerproject.org

Another is http://www.copinguniversity.com/ 

I admit, I haven't had the time to go through all of these sites and read everything...but I like what I see so far, and really...while we need to take care of ourselves, the caregiver needs some help too.  Dave Balch, who took care of his wife through four bouts of breast cancer, certainly earned his stripes.  Maybe you or someone you know can benefit from the resources he has made available.