Monday, March 22, 2010

Retreat

In lots of ways, my many visitors have been what's sustained me in the past while -- they make me feel engaged with the world, cared for, and distracted from my sadness. However, I'm starting to feel as though I have no time to myself, and I have a lot to do -- my taxes, estate planning, the usual sickness bureaucracy, stuff I want to write down and communicate to my family. And just time to read a book or jot down some stories. I'm still strong enough to run my own life, and like everyone's, it takes a lot of running.

So for the next couple of weeks, while my mom and then Matt and then Isabella are staying with me, I'm going to try to keep visitors and callers to a minimum. I am so lucky to have so many friends and relatives who care to drop by and phone, and I specifically reached out for their aid, but...there you go. The recent news I received needs to be digested and planned for.

(Plus, I'm planning a trip to B.C.! I'm hopeful that in a month I won't feel worse than I do now. It will be luxury all the way, and I'm having so much fun spending the money. Shangri-La Hotel in Vancouver! Spa treatments! First-class plane tickets!)

It's been interesting to contemplate the nature of visits to a terminally ill person. I'm keenly aware that when my friend Adele was sick, and when other friends were dying of cancer, I was pretty convinced that they could never be left alone with their thoughts, or with their disabilities, and that I had to be there with them as much as I could. I realize now that I may have been imposing, that people can be alone with their circumstances sometimes, that my ego was probably bound up in my visits and calls. Of course, it depends on your relationship with the sick person; I won't turn my immediate family away, ever.

A cousin of mine died of lung cancer a couple of years ago; he was just a year older than I, and when we were little we lived next door to one another and played together a lot. But we weren't close through our school years, and I don't think he even liked me very much. Much later, we saw one another at a family funeral and had a nice talk. When he got sick, I called him and then visited him in a hospice. At one point, I said to him, "This is a little weird, I guess, to have people suddenly get in touch with you when you're sick whom you haven't seen in decades. Why do we do this?" I had had my first bout of cancer treatment by then, and I knew a little about people's reactions.

He kindly said that he knew people cared and he accepted their need to get in touch. Of course, when you're one of 26 cousins who all like each other but were never close, you want to acknowledge the family ties and honour your aunts and uncles and parents and grandparents and somehow pay tribute to childhood memories and relationships. That's one motivation.

With friends, I know the call or the visit makes one feel useful, and helps one deal with the uncomfortable subjects of illness and dying. There's a push-pull impulse -- you want to visit the sick person, you'd rather not, the visits are morbid and fascinating, or boring and helpful. There's such a powerful combination of ways in which the visit is good for the patient and good for the visitor -- or the opposite.

In my case, I really do need help a lot, and visitors have all been put to work fetching things for me. But now I need to hunker down, and I'm lucky to have my mom staying with me 24/7.

I also know about illness fatigue, and that after a friend or family member dies, one often feels a great sense of relief. I understand that perfectly; after Adele died I felt energized for a while because I no longer had to worry about her, or about whether I was helping her too little or too much.

I would love to read some comments from readers of this blog about the delicate dance around visits and calls to a sick friend or relative. What kinds of emotions and practicalities come up for you?





8 comments:

Deb Sheppard said...

When my cousin was diagnosed with a very aggressive cancer she became debilitated very quickly. She put her visits and phone calls into the hands of her mother and sisters who were her main caregivers and contacts. I made the decision not to let my feelings get hurt if she wasn't up for a visit. I felt it was her right to control exactly how she wanted to spend her time and whether or not she wanted visitors. I also wanted to be respectful to her immediate family about the stresses in their life. The same thing happened with my sister-in-law who had a 7 year battle with breast cancer. Her husband was the one we contacted by email or phone.

Your wishes about how you want to spend your time are the most important thing. Your blog is by far the bravest thing I have ever read. You are in my prayers.

Cynthia Brouse said...

Thanks, Deb; I appreciate your comments. And I'm sorry to hear about your sister-in-law and cousin.

Let's do keep in touch.

Diane Woda said...

Dear friend,
I confess to belonging to the "disappear" category, although it took me until my mid-30's to come to that guilty realisation. I seemed to assume that my love and thoughts and concerns would somehow filter across the airwaves into the sick or grieving person's consciousness by some sort of osmosis. Which is a load of crap. All it comes across as is uncaring. I thought that I was giving people their privacy, not wanting to intrude on their grief or suffering, but really I was just not there for them. And I feel bad about that.

It wasn't until I got to experience death and tragedy personally that I finally understood how much you need your friends and loved ones around you, and how much you want to share and talk about it.

And so I resolve to try to do better. But I still struggle with finding the right words and the right balance. I don't know what to say or do - I'm terrified of getting it wrong. Which I realise is very self-centred.

And I confess that when we (the immediate family) saw my father-in-law through his cancer, we just wanted it over. In the beginnig we were energised and keen to jump into the caring role. But after a while it got hard, and we got tired. It seemed endless. We admitted that we wanted it over not just for Vic's sake, but for our own too. (After 9 years we continue to miss him and to grieve for the cantankerous old bastard!)

No matter what you say, I do think you're brave. Brave for writing this amazing blog (thank you). Brave for facing the ardous treatments and pain and being able to write about it. I always thought I'd just lie down and let it take me if I had a serious illness - that said, who knows how I'd react until it actually happens? Maybe I too would be "brave". Because as you say, shit happens and you deal with it because you have to.

Even though I have been silent Cynthia, I have been reading your blog avidly. And I am devastated. Because I haven't lost a friend before and I don't want you to die. Even if we see each other rarely and live on opposite sides of the world, you are in my thoughts. And I'm rootin' for ya.

Love, Diane

Cynthia Brouse said...

You've sent several hellos from Australia! I feel you there.

Karen H said...

Hey Cynthia,

You know me. I am your negligent friend. You know I don't mean to be, and I'm pretty sure that no matter what, you know I care.

It's not a secret that I've had a lot of death around me, but I hide it pretty well. Even before the deaths of most of those close to me, I learned to be independent.

You know I am the person at the party looking for the dog or kid to hang with and checking my watch to see when I can leave.

I treasure time with people one on one. A lot of our friendship has been that way-just gabbing, whining, complaining, laughing, being stupid, arguing, listening or going to a movie and then sometimes completely disagreeing about what we had just seen.

We have talked about this before-I think I am the complete opposite of you. Usually there is nothing more that you like than being surrounded by people, and for me that's my nightmare. So it is interesting to read in this post that you are retreating a bit to reflect.

It really sounds like right now you are going to do whatever you want. That makes me smile in spite of the tears.

And though I am a rotten lousy friend, I am your rotten lousy friend!


thinking of you

Karen

Kate said...

I'm so glad I was able to see you last week, but totally understand your need for time to yourself. Your mom will take great care of you! I truly hope the trip works out for you. Just know I'm thinking of you and hope to see you again, maybe once you're back.

Love,
Kate
xox

nadine said...

It is very difficult to know how to act around people that are approaching mortality. My first reaction is to be close to them but it's quickly replaced by discerning what they want and need. I've had 3 very close aunt die and they all made different choices in the way they wanted to spent their time at the end.

One aunt didn't answer her phone but would send messages to us through her sister. We respected her wishes but I still wish I had a chance to talk to her and tell her what she meant to us.

Another didn't want to burden us and wanted to protect us. (I think) She hid how serious her illness was from us.

And one aunt wanted everyone around her. She came from a very large family and I think having a lot of people around brought her comfort. When we got the call that her death was imminent, I went to the hospital with a relative. I remember the emotion being very similar to witnessing a birth but with a very different ending, of course. Like putting your hand through extremely hot or cold water and for an instant not knowing which one is which. Like a birth, death changes dynamics in a family.

It's admirable that you are able to make the decision to take some time to yourself. More admirable is the way you are able to voice it.

I wish you a wonderful Queen-like trip to BC!

You are in my thoughts,

Nadine

PS. Sorry for my poor writing skills... feel free to copy edit me!!! I blame it on the fact that english is my second language.

Cynthia Brouse said...

I was thinking you write very eloquently! I love the image of the hot and cold. Thanks for thinking of me, Nadine, and for your thoughtful comment.