I think, thus far, the toughest thing I've ever had to do was to accept the fact that there was nothing more humanly possible that could have extended Alan's life in a dignified way. And the next toughest thing was enduring our friends' suggestions and offerings to call doctors they knew, explore one last treatment idea etc..., once we had reached that horrifying conclusion. Obviously, those gestures came from love and desperation to save a very special life, beyond worthy of saving. Yet offers like that, in the eleventh hour, when every resource had been thoroughly exhausted were difficult to field, to digest. It is monumentally challenging to face the searing truth that nothing more can be done. It goes against the fiber of our beings. And once you are able to come to terms with that, however crippling it is, the extraneous attempts from others can make you feel as though you're giving up, when in fact you're finally accepting that everyone has done all that they can do, to restore that life in a healing way.
What drives you in the fight against terminal disease is the hope for a cure, or a treatment that might add time to one's life. And Alan's family and I left no stone unturned. We sought multiple opinions, conducted extensive research, consulted the NIH for trials, scoured the internet for case studies, and asked for help from others throughout the country who might have a lead toward something. Anything. Alan endured more than enough scans and treatments and experimental drugs and prayers.
He wanted life more than anyone.
We all wanted life for Alan more than anyone else.
Much of what he did, was for us.
But there is a time when the expression "quality of life" takes on profound meaning. There is a moment when you must really look at that beloved person who has been through so much and have the courage to wish for them
rest.
And so, if you know someone who is journeying through such an unforgiving landscape, trust that those around them would have walked to the ends of the earth for them. And in many ways, did.
No one ever stops wishing for a miracle. Ever.
If assistance is needed they will ask. It is kind and loving to want to help, but offer gently, and have the sensitivity to step back and say no more.
Nature is indescriminating.
It just gives and gives, and then takes everything back.
Thursday, November 11, 2010
Monday, November 1, 2010
Live Through This.
Awhile ago someone asked me for advice regarding what to bring to a friend who was terminally ill. They weren't sure if they should bring gifts of food, or more meaningful gifts and were seeking advice regarding how / what to say if it was a last visit. Many tough but thoughtful, beautiful questions and I was so heartened to have been asked. Visiting and spending time with someone who has been prominent in your life and now may leave it shortly is excruciating; it forces us all to face our own mortality and more immediately gives you a heartbreaking taste of love and loss.
Visits and patients and environments are varied but here are some suggestions from what I felt and experienced with Alan. I can't speak for him, but I was there, in an altered state for sure, but present nonetheless: Food, in our case, wasn't a good idea. If you're a cancer patient often you have undergone or are enduring rigorous therapies that either limit your diet or render you unable to physically eat. Cancer floors of hospitals often prohibit outside food - it can upset those who cannot eat and often isn't something that can be consumed anyway. It can be torturous. The only good that comes of it is as a way to thank the nursing staff. Family and friends, on the other hand, may welcome food - but generally they'll be uncomfortable eating it in front of others and often our appetites were gone too. So consider where you'll be going and ask ahead of time if they'd like something and leave it it that. Don't force, no one has the energy, or interest.
Best gifts? Your presence when the person who's being visited has the energy. Second to your presence? Anecdotes from your shared lives. Memories and stories or even the most basic reminiscences.
Life relived is a gift.
Old photos are perfect conversation material, and one of my/our favorite physical gifts was a tiny potted flower plant. It was small, it was sweet, it was simple, it was life. Flowers NO, plants, yes. Other special thoughts were pictures drawn by our friends' kids.
Whimsical, bright, and loving.
Most importantly, if the friend is lucid and aware of their fate, if you can summon up the courage, let them know in private how much they've meant to you. You don't have to gush, you don't have to be ominous - and you don't have to say goodbye - but you can say, you mean the world to me and I hope to see you again in the next few days (if that's true) but if I can't for whatever reason prevents that from happening, know I love you and will celebrate you and carry you in my heart always. Something like that - honest, from the heart.
It is torturous, I know.
But I think for Alan - despite the heartache and the courage it took for him to listen - it gave him a profound sense of the mark he'd made on the world.
Keep your visits brief.
Seriously.
Watch them for signs. Ten minutes, half hour - max, unless they say otherwise.
Illness is exhausting. Meds are taxing.
Hearts are full.
Don't be offended if they don't want a visit.
Life is hard, death is harder.
Be prepared that if they do want to see you, you may get there and they're sleeping, or they're not up for it or they're being treated for something. Plan with extra time and understand you may not get in.
Emails or letters are wonderful too - someone inevitably will be there to read them aloud.
And for the family of the person who's days are measured?
They're savoring a life. Hanging on to minutes, hours, days.
Don't force walks, showers, coffee breaks, meals out.
The thought comes from a good place but think about it. If your loved one may not make it through the night or the next day , they won't want to leave their side unless the doctors kick them out. Even if I had a year more with Alan I'd be by his side every waking moment. (I would shower, I guess.)
No matter how unhealthy it is, or how much weight one is losing - if company is wanted, they'll ask.
Respect their torment, leave it at that.
Hard. So hard. But if you can live through this, you'll be OK.
Visits and patients and environments are varied but here are some suggestions from what I felt and experienced with Alan. I can't speak for him, but I was there, in an altered state for sure, but present nonetheless: Food, in our case, wasn't a good idea. If you're a cancer patient often you have undergone or are enduring rigorous therapies that either limit your diet or render you unable to physically eat. Cancer floors of hospitals often prohibit outside food - it can upset those who cannot eat and often isn't something that can be consumed anyway. It can be torturous. The only good that comes of it is as a way to thank the nursing staff. Family and friends, on the other hand, may welcome food - but generally they'll be uncomfortable eating it in front of others and often our appetites were gone too. So consider where you'll be going and ask ahead of time if they'd like something and leave it it that. Don't force, no one has the energy, or interest.
Best gifts? Your presence when the person who's being visited has the energy. Second to your presence? Anecdotes from your shared lives. Memories and stories or even the most basic reminiscences.
Life relived is a gift.
Old photos are perfect conversation material, and one of my/our favorite physical gifts was a tiny potted flower plant. It was small, it was sweet, it was simple, it was life. Flowers NO, plants, yes. Other special thoughts were pictures drawn by our friends' kids.
Whimsical, bright, and loving.
Most importantly, if the friend is lucid and aware of their fate, if you can summon up the courage, let them know in private how much they've meant to you. You don't have to gush, you don't have to be ominous - and you don't have to say goodbye - but you can say, you mean the world to me and I hope to see you again in the next few days (if that's true) but if I can't for whatever reason prevents that from happening, know I love you and will celebrate you and carry you in my heart always. Something like that - honest, from the heart.
It is torturous, I know.
But I think for Alan - despite the heartache and the courage it took for him to listen - it gave him a profound sense of the mark he'd made on the world.
Keep your visits brief.
Seriously.
Watch them for signs. Ten minutes, half hour - max, unless they say otherwise.
Illness is exhausting. Meds are taxing.
Hearts are full.
Don't be offended if they don't want a visit.
Life is hard, death is harder.
Be prepared that if they do want to see you, you may get there and they're sleeping, or they're not up for it or they're being treated for something. Plan with extra time and understand you may not get in.
Emails or letters are wonderful too - someone inevitably will be there to read them aloud.
And for the family of the person who's days are measured?
They're savoring a life. Hanging on to minutes, hours, days.
Don't force walks, showers, coffee breaks, meals out.
The thought comes from a good place but think about it. If your loved one may not make it through the night or the next day , they won't want to leave their side unless the doctors kick them out. Even if I had a year more with Alan I'd be by his side every waking moment. (I would shower, I guess.)
No matter how unhealthy it is, or how much weight one is losing - if company is wanted, they'll ask.
Respect their torment, leave it at that.
Hard. So hard. But if you can live through this, you'll be OK.
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