Advice Needed- Dealing with a looming death

[Geonz]

... and if you let yourself listen adn not withdraw (too much... sometimes you have to)... there can be moments to treasure.
One day a priest we knew came by to give the anointing of the sick sacrament ... and he was chatting and somebody dropped by... and stayed... and then there was another knock on the door... and then another... and then there were eight of us sitting around the living room (I had to find chairs!) just sharing the moment and saying whatever kinds of intentions and prayers and thoughts happened (most of the folks weren't Catholic). Death can show us just how connected our worlds are. Love transcends it all.

[Lifesgreat]

The www.fatcyclist.com archives from a month or so ago have some touching posts about how Fatty and his wife are dealing with her most recent cancer battle (it isn't good). They are making videos, hanging out as a family and not doing much differently than if she were cancer-free. The phrase "acknowledging is not that same as giving up" really impacted me.

Maybe there are some ideas on his site for your family from someone who is living it too.

Wishing you comfort and peace.

[shootingstar]

I'm sorry to hear of this Aggie.

I have no advice just a story ..there is abit of cycling here.

One of my brothers-in-law had a brother who succumbed to cancer of the larynx at 40 yrs. Yes, he did smoke. Memory is of him jokingly having a cigarette hanging from his mouth for a short few min. while we were cycling in a 4-day group trip ride. I think we all rode 350 kms. on that trip.

He had chemo for 2 years. He actually remained very private with his family. My brother-in-law held his brother's hand in the hospital when he died. Then my brother-in-law went home to tell his parents.

The celebration of his life at his funeral did feature photos of that seminal group bike ride.

A sibling...is really in the end, in most cases, a friend...for life.

[fastdogs]

I'm reading all of these messages and taking them to heart, because my older sister is coming out for a visit, and I think she may not have very long from her breast cancer, and just hasn't told me. We aren't very close; I was in the army for 20 years so wasn't around, and by the time I retired she had moved out of state, so we've seen each other maybe once a year. My mom made a comment that this may be the last time we see her alive, so I feel like they aren't telling us siblings the whole story. She had her first mammogram at 50, and they found stage 4 breast cancer- removed a lot of lymph nodes and she's had a mastectomy, chemo, and radiation. Recently they found cancer in her spine, so she is still have some treatments. She is coming to visit for a couple of months since they have said she is "terminal" and can't work any more. She is kinda like a stranger to me, but I will be able to see her every weekend while she is here. I will probably treat her normally, since I don't know if she's been given any time frame or anything. They did say she can't travel much, but this is my first experience with cancer, I guess I'll just follow the conversation and if she talks about it I'll listen. She found out last year, and that was around the time I got my first bike, and rode in a breast cancer ride for her.
vickie

[shootingstar]

My mom made a comment that this may be the last time we see her alive, so I feel like they aren't telling us siblings the whole story. She had her first mammogram at 50, and they found stage 4 breast cancer- removed a lot of lymph nodes and she's had a mastectomy, chemo, and radiation. Recently they found cancer in her spine, so she is still have some treatments. She is coming to visit for a couple of months since they have said she is "terminal" and can't work any more. She is kinda like a stranger to me, but I will be able to see her every weekend while she is here. I will probably treat her normally, since I don't know if she's been given any time frame or anything. They did say she can't travel much, but this is my first experience with cancer, I guess I'll just follow the conversation and if she talks about it I'll listen. She found out last year, and that was around the time I got my first bike, and rode in a breast cancer ride for her.
vickie

Keep in mind that some of us here on the forum, also see our sibling(s) once a year or less since they live thousands of kms. away. Maybe phone call, email or letter/card every few months. The level of frequency doesn't mean we love each other less or aren't close, but in our family...we don't confide everything to one another, only significant events. I have 5 siblings..so there are different communication styles with each one.

If it's merely distance but general goodwill between you and your sister, perhaps it would be meaningful for both of you, that you express in an objective way, that because of age gap, mobility due to school, it makes it more challenging to keep updated on each other over the years.

If I was in your position, then speak directly from your heart without blaming her or anything for "distance", that she will always be your sister regardless of distance and to express your discomfort to mention her cancer but you want to know if she is in pain/tired when both of you do things together during the visit.

I witnessed first-hand my mother who had not seen her sisters for...40 years when I accompanied her to San Francisco to visit. Yes!!!!!! Many immigrants who came to North America from Asia, prior to 1960's found it very expensive to fly overseas when air travel was more expensive. My parents didn't have money to fly all over North America when raising a large family on their low income.

It was such a revelation to witness..and the shock of each sister to see how much each other had ..aged/change.

Anyway, one of my aunts died from heart attack about 2 yrs. after my mother's visit. That aunt was 15 years older than my mother.

Please share good time and thoughts with your sister during her visit. You won't regret it...no matter, how painful certain moments will be.

A sibling is a friend for life...and isn't that one of the main reasons why parents have more than 1 child...to provide life companion(s) within the family.

[spindizzy]

Wow!

What an enlightened group TE is. And how many of you are in the position to be there for friends and family in meaningful ways. It used to be that no-one talked about death, dying, wishes and, thoughts. I cannot imagine what it must be like to want to talk about death, but having people around me not want to talk. "The elephant in the room."

My mom's youngest sister (5 years older than myself) died of breast cancer in 2000. She phoned me when she was terminal to ask me that if she should "linger" if I would take care of her until she died. She lived in another province. I spoke to my DH (he said it was impractical) I talked to his mother and asked her if she would stay with our family if I needed to go. She said yes. I told my aunt that I would be there if she needed me. I flew out to visit her one weekend in November; she died a month later. I believe in my heart that she felt comforted knowing that I would be there to help her family if it was needed. She was not afraid to talk about death and planned her own funeral.

And don't forget the kids. They sense when something is wrong, and not being truthful about sad feelings can really mix them up. Young children can only take in small bits of information at a time, so explanations need not be elaborate. And allowing them to participate in meaningful rituals (drawing a picture for the dead person, or the giving of some small memento) helps them deal with the loss of that significant other.

[Dogmama]

. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

You don't have to do it yourself. Hospice staff are wonderful people and can ease the transition. Enlist help.

My DH was diagnosed with colon cancer between stage 3-4 almost 5 years ago. Statistically, he shouldn't be here. Surgery led to a MRSA infection so chemo was delayed. Chemo landed him in the hospital with dehydration. A year later, he had his hernia repaired (where he tore out stitches from throwing up.) I had to learn how to be a nurse real fast, as I did sterile bandage changes, vancomysin (sp?) into his drip IV, etc. Oh, and I held down my stupid job, often doing payroll in the ICU waiting room.

I found a caregivers class where I could vent everything I couldn't say to anybody else because I was too ashamed. Some days, I wanted to just walk out the door & keep walking. I was (and am) still madly in love with him - but the pressure was unbelievable.

I would urge you to find some outside help for yourself. The airline attendants tell you to put your own oxygen mask on first before you help another. Go get your oxygen mask.

Love and prayers to you & yours...

Kim

[DDH]

Wow Kim, what a strong person you are. I don't know if I could find that kind of strength and I hope I never have to find out.

Aggie, I don't have much in the way of advice other than to be there for you to be there for your husband as he goes through this. It's a road I guess we all eventally will have to take with someone in our lives, and as hard as it is, and sad as it can be, I would tell anyone going through it to try to find joyous moments to cling to and remember.

[bikerz]

Amanda, I'm sorry for what you and your family are going through.

A friend of mine posted this list of things to do on her blog, after her nephew died of brain cancer. I found these comments to be very helpful when a good friend of mine was dying, both in practical and emotional terms.

Ten helpful things that people can do or say in times of extreme crisis or grief

1. Bring food, without asking. Leave it at the door with a note, if you don’t want to disturb. And bring food that can keep (frozen stuff that can be re-heated can be as good as a warm dish, since they’re not obligated to have an appetite right then and there).

2. Bring food in containers that DON’T NEED TO BE RETURNED. Can’t stress that enough. Otherwise the house will become a veritable Amway Depot of tupperware, pots, etc., each of which represents enormous generosity (which is good) but each of which needs to be returned. Or even stored somewhere. (Which is yet one more stressor or problem to solve.)

3. Step up, or if you can’t, find someone who can step up and organize other people’s generosity on behalf of those you’re supporting. Oddly, as everyone who’s lived through (or, bless you, are currently living through) a huge family crisis will know, a landslide of generosity, while an enormous boon, still needs to be fielded. And if you’re working on trying to save someone’s life, or trying to make out the smoky remains of a world that they just left, figuring out whether or not you need another plate of lasagna can often put you over the edge. Someone else who loves and knows you and your home can and should field the calls on the lasagna for you.

4. Employ the internet to aid in the support. You can find pre-fab sites that enable families to have an online “guest book” of words of support; more and more, simply starting a family blog can do the trick, especially if its design enables a user’s including additional pages, such as privacy-protected phone lists, calendars to organize who’s bringing what food when, etc.

5. Support the supporters. In other words, look carefully at the sphere of people who are affected by the crisis or loss, identify those who are doing the most work in supporting the key folks, and then support them. If you don’t feel close enough to the affected people, but want to help, rest assured that the helpers are spreading themselves as thin as they can and could use someone to buy them groceries, walk their dog, etc.

6. Unless they’ve asked for no phone calls, call. Leave sweet, short messages; just say you’re thinking of them. You could certainly ask whether they need anything, but that’s almost a formality. It’s the work of loved ones around those in crisis or grief to work really hard to try to figure out those needs. Unless they have superhuman powers, folks in crisis or extreme grief are unlikely to (a) be able to articulate just exactly what they need, and/or (b) be able to return your call for hours, days, weeks, months, maybe years. Take no offense, of course, but also by all means DO THE WORK OF GETTING BACK IN TOUCH WITH THEM, consistently. Even if they don’t have the energy to call back, they still benefit from the reminders of your concern. And when they are up to answering the phone, they will need your love.

7. Attend to the little creatures who may be forgotten or under-tended in the wake of the crisis or grief. Meaning kids, pets, even plants. Anyone who has lived through (or, bless you, is living through) crisis or extreme grief will know that kids show signs of stress and grief differently — differently than adults, and also differently than one another (see some of the links at the bottom of this post for more on this). But don’t think that because they aren’t crying, or talking about their feelings, they don’t feel the distress around them, and/or aren’t in distress themselves. So volunteer to be with them, restore their daily routine, etc.

8. Pay extremely close attention, however, to the changing emotional needs of the folks you are trying to help. These needs can be logical or illogical; predictable or unpredictable. It matters not. Until their world begins to rotate on its axis in the proper direction (and during crisis and in extreme grief it most certainly does not), it is not anyone else’s place to quibble over how to help them. So for example, if taking one of their kids out of the house for an afternoon at Chuck E Cheese’s seems like a good idea to you, and even to the kid, but it destabilizes the parents who need to have all their chicks counted and in the nest, try to think of some way to help divert the kids at the house.

9. When you’re far away and can only send your goodwill in a note or a gift, don’t worry about what to say. Really. Telling them the simplest truth is good enough: You are so sorry. You want to help in any way you can. You will be in touch. Many people may become quite upset if you say “I know just what you’re feeling” unless it’s really, truly, the case. Grief over loss is so, so idiosyncratic. Siblings, probably even identical twins feel differently over the same loss. No loss is the same. Your efforts to try to understand how they feel, and provide love, are good enough.

10. Be patient; indicate that patience to them. Help them to know that months and years from now, you will still be there. The worst thing in the world for a person to hear, when they’re struggling in the wake of a crisis and paddling across an ocean of grief, is “You should be feeling better by now!” As utterly obvious as that might seem to be, bizarrely, too many people hear that message. Either directly or by implication. They’ll be done grieving when they’re done. Meanwhile, help them find ways to live with their phantom limbs; sit with them; listen to their stories; help them feel fine about crying all they need to — if they’re the crying type (and help them feel fine about not crying, if they’re not). Hand them a hanky. Bring them water so they don’t dehydrate. Take a deep breath.

[Possegal]

I started a blog for my sister when she was first diagnosed. I had her look at it at first before going 'public' so to speak. She was OK with it, though I'm cautious to not say too much and we've yet to have a really bad scan, so I haven't had to cross that bridge yet. I'm privy to all info, being the medical person in the family (someone once called me her medical bodyguard, I loved that) I'm at dr appts and I'm teh one that does most of the calling and talking to them, they give me the copies and disks of all the reports and she calls me before doing anything. So I know it all, but realize that she doesn't need everyone to know it all.

But, the blog has proven to be quite helpful. Most of our cousins are in Canada and this way they can follow along with what is going on. Her friends get updates faster and without worrying about calling and not knowing if the news was good or bad. All and all, I'm glad I did it and would recommend it to other families spread apart and dealing with something like this.

There really have been some great insights from this group, what a great thing message boards can be!!

Now this reminds me I should go update my sister's blog, as today was her final Cyberknife treatment and I'm sure folks would like to know that.

[Aggie_Ama]

Thank you all for the advice and encouragement. This is really a tough situation and my husband is the type that internalizes much of his stress. I will share some of this with him and try to use it myself.