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September 13, 2004

Advice on Dying
Jim Fossett
In Memorium
Janet Perloff Fossett

Having just been through the process of watching my wife die, I can offer some advice about some things that worked for us that others might find useful. The problem is that the process is dependent on your particular disease and is notoriously hard to predict in any case. My wife Janet had CSF mets and went into a rapid decline after methotrexate failed and our onc, with our agreement, stopped treatment. She lost physical function fast--went from walking to a walker to a wheelchair inside of a couple of weeks, and couldn't move at all, even to turn over in bed, without help at the end. Mental function went more slowly and she had patches of lucidity until the very end. Based on this limited experience, I would offer the following suggestions:
1--Give people a chance to say good-bye--You may have things you want to say to family, friends and the like; they also have things they want to say to you. I think one of the best things we did with our thirteen year old son was let him read a couple of letters his mom had written to him about how sad it was that she wouldn't live to see him grow up. He wrote her a letter back that I think helped him come to some closure. Life is going to be full of woulda-coulda-shoulda's for your loved ones under the best of circumstances; try to give them a chance to tell you things that they need to say.

2--Get drugs if you need them--There really isn't any reason for anyone to experience the kind of agony that marked cancer deaths 20 years ago. Morphine, oxycontin, lortab--whatever it takes. Janet didn't have any pain--CSF mets have their small mercies--but she was on a steroid--decadron--to keep down inflammation and was on small doses of morphine at the end to help with breathing and overall comfort levels. Get what you need to make you comfortable--there's no reward, either in this world or the next, for hurting.

3--Get linked up with hospice--If there is hospice in your area, they can be a lot of help even as an outpatient. Our agency was really helpful in getting equipment delivered, running interference with the onc and other physicians, giving advice on drugs, etc The social workers and/or chaplains can also be helpful to you and your family. Nobody just drifts into this line of work--the people are in it because they chose it and believe in it.

4--Get good home care--The one thing that hospice doesn't usually cover is extended home care--someone to change diapers/do feeding/ change sheets/sponge baths and the like. Your family should be able to spend time with you listening to music, reading, and other things that they will remember fondly; not wrestling to change diapers and other maintenance activities. Some won't be able to do it--changing diapers on an adult like you change them on a baby isn't for everybody--and people may feel guilty if they can't do it. Give them a break and get some help. Good home care can be hard to find--insist on home aides that have hospice or other experience with the dying and try to get the same two or three aides on a regular basis. It's worth the money, especially if things drag on for a while.

5--Go with the flow--After insisting adamantly for years that she didn't want to die at home and wanted to go into hospice inpatient at the end, Janet turned down hospice flat when she became eligible and died peacefully at home. We were ready to put her in if she showed some of the scarier symptoms of dying--bleeding out, loud, harsh labored breathing, and the like--but those never came. We took better care of her at the end than hospice would have been able to, and that's a real comfort. Dying at home doesn't curse the place--there are ghosts there, to be sure, but most of them are loving, friendly, and memories of better times. Just get rid of the sickroom stuff, and it's still the place where you all snuggled and loved together.

6--Let people help--We've been surrounded by friends and co-workers who wanted to do something. Let them do it---bring in food, take your kid to buy school supplies, cut your grass, whatever. Let somebody else worry about it, though--spouse, friend, etc. This applies to your family as well. Maybe you want to plan your funeral service, but leave a little room for those who love you to feel like they contributed as well. I'm a lapsed Presbyterian, but I think nothing helped me say good-bye as much as planning my Jewish wife's funeral service.

Another activity that did our family a lot of good was putting together a picture board of Janet's that was displayed at the service. This seems to be a northeastern custom--I've seen it at funeral services for people with all kinds of religious affiliations--but looking through photo albums, remembering when pictures were taken and where, was an enormously uplifting and comforting experience, full of laughter and recollection. There were all kinds of pictures, ranging from her first birthday party to one of her dressed up as a gerbil to entertain our son, to a picture of all three of us at our son's bar mitzvah in March, and each one had a story that someone remembered. Memory is a real comfort to the mourning in a way that theology really isn't, and those who love you need occaisions to replenish their stock of good memories of you.

I hope this helps--there's no way to make dying easy or painless, for you or those who mourn you, but it doesn't have to be full of agony and fear.
Jim Fossett
September 8, 2004

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