A place to talk death and dying issues
Comments
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Hospice can be done in home as well and that costs less than doing it in a hospital. Depends on the family dynamic whether that's a good idea or not. My neighbor who recently passed away had in home hospice and died at home. It was a great comfort to his wife. Insurance(private, Medicaid or Medicare) can cover hospice or palliative care and from my reading, many hospices also try to assist those who don't have insurance or limited income.
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Suze Ormand has a site that I used to do my will is how I did my will and I change it often....I love that you did this cause we need to talk to others that feel the same as I..
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Thank you for that info, Chickadee. Still don't want my Pack Rat changing my diapers or wiping my drool though. I hope I die before it gets to that.
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Pizzada,
I log off to think of a response. You are a very loving husband to want to know what your wifes wishes are. For me, having my final papers in order was a stress relief that lifted a ton of weight from my shoulders. It was than that I felt I could live life to the fullest. Your wife might also be thinking about how to start the conversation and may not want to upset you. Maybe start off with saying; "I will make sure your are as comfortable as possible". If she wants to talk about it that might just be the opener.
What do the rest of you think?
In regards to living will, the PA laws kick in when you cannot speak for yourself, you do not have to be brain dead, brain mets counts as not being able to speak for self. The idea of going to a site with state specific laws is a good one.
Thatlife,
I have skipped more than one psy appointment. Sometimes it feels good to be in control and take me time. We need that now more than ever. I get tired fo playing patient all the time. This week I told my onc we are going to every 3 weeks on the Herceptin.
I also don't want anyone one to change diapers or wipe drool. Brain mets is the fastest death, hmmmm.
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pizzadad..after talking to my brother about all the loose ends i hadnt organised, and which were bothering me over the phone one night, he suggested, as i mentioned earlier, that he come down, in about a month, and we would get through some of the crappy things that were on my mind...it was good in that i had time to get ready for it, and was so relieved to get most of it out of the way. When he left, i felt much more in control. So maybe, an idea would be to approach it like 'why dont we organise a weekend to get all the wills/POA/wishes out of the way, then we know it's done, and we can focus on our holidays, and the future'..or something to that effect...
ma111...yes, its good to take control for once, and get off the merry-go-round
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Lena: i admired your stand on the other thread..
i recently asked my best friend from 30 yrs ago, who was also my first serious BF at 16, to administer what is necessary when the time comes (with hospice nod) so that i dont 'linger'..palliative sedation i think its called, and he was happy to take the role on...but my vanity is now thinking, do i want him, who loved me as a young girl, to see me and spend time with me at the end?...who will shave my tamoxifen whiskers before he arrives??? lol....so am reconsidering...im thinking, hospice outside the home, as i dont want my 13 yr old to have to peep in my door every morning wondering if im alive, (at whatever age she will be) as i did with my mother.....and just professional staff to help me...its a hard one..
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that's-life - the in-home hospice is something I struggle with, as there are no free-standing hospice centers within 30 minutes of me. I want to have access to my family and vice-versa at the end, but I'm afraid of it being traumatic for my kids, and then they'd have the memory of me dying at home...
Is it possible to do in-home hospice, then go to the hospital at the end? Is that even preferable?0 -
Lena! NEARLY indignent? I'm there!
Maybe we'll start our own Hospice House. Doomy gloomy indignents only... love it!. I try to keep it upbeat, but man, this cancer is ****!!!!Texasrose... So fantastic that you're getting that degree... no limits...
xoxo
Rose.
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Thank you for starting this thread.
I think planning for something you know is inevitable, and not just dumping it on the survivors to deal with, is not only practical, but a great act of kindness.
It is also a relief to be able to talk about these issues that most others in our lives understandably want to avoid. I also enjoy the humor that runs through these posts. I'd be lost without that.
Hugs to everyone,
Rachael0 -
Oops, Lena... "Indigent!"
Yeah, well, me too... it's getting gloomier by the minute!xoxo
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Lena and steelrose,
So sorry to hear that you guys are in the gloomy phase. Praying for you that you are as comfortable as can be.
Suzie35,
It is very much possible to start at home than go as an in patient. Most hospice have both for that reason or you could go to the hospital.
One of my biggest fears is that part taking too long and being just totally miserable. I hate thinking about that part.
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I think I wouldn't want to be at home with my family. It would be much tougher for them never being able to get away. I do fantasize about dying by the sea (which would be far from where I live). I read about a woman dying on a boat during a sailing trip. I think that was a story in Dr. Susan Love's Breast Book. There is something romantic about that.
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My family are having a hard time believing that I am going to die, that I have a terminal illness. I get all the time 'but you look so well!'. I feel like screeming at them but that would be a futile exercise on my part.......all I can and do do is let them know what my wishes are little by little as they become open to the suggestion. The rest is up to me to make sure that I have all things ordered in such a way that it is easy for someone to just step in and carry on. I am, over time, cleaning and sorting all of my possessions so when need be, my daughters will be able to dispose of things easily and in order. I have so much craft goods that I will let them know that I would like all of it to be donated to a charity that can use it to raise funds. My jewellery etc has already been designated as to who is having what so there will be no arguments. I have a trunk full of things that belonged to my son that I have put away for his son and this will be put in the hands of my eldest daughter to give when she feels that he is ready and responsible enough to have it. The household will stay as is and will pass along with my car directly to my DH as is the law here. I have discussed what music I want played at my funeral with my eldest daughter as I know she will remember (she has a memory like an elephant.....never forgets a thing). I have already reistered with Paliative care so all I need to do when required is to make a phone call and all with be put into action. We have spoken of the 'Plan' for later and what I would like to happen but of course that totally depends on wether I am able to be at home. It will I think all change should I need to be hospitalised. The rest, I think, will be a day to day thing and hopefully the days will be many.
Love n hugs. Chrissy
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I love this thread. Its so comforting that I can read your post and feel that same. I have 2 children and I struggle with the thought of passing at home. My mother died of breast cancer and spent most of the time at home. She was on oxygen 24/7 and seemed to be uncomfortable. It was a struggle for my dad and younger sister that still lived at home with her. Her last 3 days were spent in the hospital. This was 17 years ago. My sister & dad said it was very hard. I was married and lived 30 minuets away. Visited everyday but its not the same as living with her. I feel that our home should be a safe haven and something not filled with sadness. I have cleaned out my jewelry box (of junk jewelry) and closets of things that do not mean anything to me. I told my husband I want to be cremated and have the urn at the funeral home, no coffin or body. After that I want them to do what ever they feel they can handle. My feeling is there is no right or wrong I am already gone and anything they choose won't hurt my feeling or be wrong.
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thank you for this thread..
I am fortunate to have an organized husband and we have addressed many logistics. I will talk to my kids about home hospice.. They are very familiar with it actually.
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DH and I have been working at the paperwork end of things for a couple of months now. One resource I've used in the past and even my atty today says is good, is Nolo Press, a great self-help legal group, with several state-specific items. They have everything - I did my own divorce through them back in 1975. I am now ordering "how to be an executor" book for our nephews who will be our executors, and sticking it with the final papers. You can find them at nolo.com.
My best to you all.
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ma111, don't worry, I'm ALWAYS gloomy! That's part of my NORMAL personality, it's not all on account of the cancer. I suppose it helps to be gloomy now that I DO have the cancer (when you think the worst and it happens, you're not so surprised and disappointed, but when you think the worst and something GOOD happens, it's a really pleasant SURPRISE!), but no, I didn't suddenly turn into a cynical, bitter pessimist upon hearing the doctor say, "You have inflammatory breast cancer. It's Stage IV." I already WAS like that! LOL
Actually I just GOT about an even amount of mixed occurences, so here's a perfect example of it:
1. When I was told I had to have a BMX in May, I thought my whole summer would be shot due to having to recover from it.
2. As it actually happened, the sequelae of the BMX (plus removal of some skin mets on the skin on my right ribcage area) has been turning out not nearly as bad as I thought, and no, recovering from the surgery will NOT ruin my summer. I even got to start my container garden. Oh, and even BETTER? My surgeon told me that as far as evidence was concerned, she got ALL the cancer out, and she goes on to add that with this serious reduction in the tumor burden my body was carrying, I might actually feel some physical energy soon. Key words here are, of course, "as far as her evidence is concerned," which now brings us to:
3. She says I really need to have rads on that area where the skin mets were, and she's positive that if I don't, they and probably more just like 'em will be popping back up again within a few months at most, and I know my oncologist (who I have an appointment with next week) will back her up strongly, since she (my oncologist) has also occasionally whispered the word "radiation" since I showed her the first skin met.
Conclusions:
A. Did my surgeon say RADS at the same appointment she said "physical energy"? I guess I'm the only person who even notices things like this. Sooo, I was right the first time: My summer IS going to be ruined, even if it's rads that ruin it and not the BMX. I mean, how is being exhausted at best from rads, between the rads themselves and having to drive 60 miles a day round trip to go get them, for however long I have to go for treatment. Still waiting to be scheduled to see the radiation oncologist though so I don't know the precise details of my dosage, number of treatments or for how long I have to get them -- going to allow me to enjoy the summer or get some energy going?! I mean even if ALL I get is tired -- which would be "good" because I really have very fair, hypersensitive skin as it is -- like how much time am I going to have to enjoy and how easy will it be to make plans to, or actually do fun things, i.e., actually live my life while I still have it -- if I'm constantly tired plus busy every day driving to and from the cancer center?! (and THAT's ONLY if it goes GOOD: i.e., no skin issues in the treatment area.) And no I don't like to drive, so that won't be "fun" I can mix up with the treatments.
B. You see, I was right from the get-go on this. My summer is going to be totally or almost totally ruined. Good thing I'm so negative! LOL
If I was one of those cheery optimist "hope" types, I'd probably have gone insane having all that hope smashed against a brick wall.
So OK, back to the Gloom and Doom... LOL yeah steelrose, "indigent." Don't tell me you already have brain mets...! :-O
Anne -- yup, I know what you mean -- "let them" (them being those you leave behind) do what they want with your cremated remains. I suppose I'll actually need to clarify more that kind of thing in my will (when I finish it: still haven't gone back!). I mean it when I say that I personally don't need or want a funeral, so that's why I won't be planning one or leaving any kind of guidelines, but if there's anyone who WANTS to have a funeral or memorial service of some kind because it gives THEM closure and makes THEM feel better, it's OK and they can do what they want. (Like I'll have any control over anything after I'm dead! HA!)
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ma111 - thank you, that is reassuring.
Chrissy - I hope that my family will agree to palliative sedation early on, rather than waiting. It is something my mother will understand, but she won't talk about it much with me now
.Anne - I agree home should be a safe space. I want to spend as much QUALITY time as I can with my family, but when things turn, I want to be able to go to the hospital. I can only hope that is the right choice. I also want to be cremated and have the urn at the funeral home. After that, it is my DH's choice - he can have me interred at the cemetary with my grandparents, or keep me around until he is sure he is settled. He would likely move to be closer to his parents.
Thank you for the link Lost_Creek - I will check that out.
Some things I HAVE started doing are journaling for each of my 3 kids, mostly day-to-day stuff but I always try and sneak a "life lesson" in, hopefully not too obviously. I've also gotten three plastic bins and started putting things in for each - pictures they've drawn, notes they've written, art projects. Things that mean so much to me and that I want them to have. I also had my wedding dress cleaned and packed for my daughter so she'll have it.
For those that have lost a parent, would it be too difficult for my children if I bought them things for throughout the years? For example, a cute outfit for my daughter for when she's older? Gifts for birthdays? Cards? I just so want to be a presence in their life regardless, but I don't want to make it any harder.
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I like dying on the boat.
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Just wanted to let you all know this regarding Hospice. My psycologist encouraged my husband and I to get our questions together and visit our local Hospice - we did this about a year ago. We had an appointment there with a Nurse Practitioner and ask a lot of questions about in-home vs their facility (they only had 6 or 8 beds available at that time). They seemed to indicate that these facility beds were saved for certain situations. We probably spent 2 hours there with our questions - I think it helped my husband a lot.
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Several years ago I saw an interview on some TV show of a father and daughter. The topic of discussion was the letters the deceased mother had left for the daughter. Very interesting. After much searching and googling I've found that it was Rebekah Gee and her father, who is Pres. of Ohio State. Google Rebekah Gee Letters from My Mother. Tried to put a link here, but couldn't get it to work. Maybe someone else can. Couldn't find what show - but at least I know I didn't dream it. My memory is that the letters were both a blessing and a curse.
I do not want to die at home. Even with Hospice (at least, our local Hospice) family members are the caregivers. No way do I want to put that burden on my only surviving daughter. My dream is to live at home, pain free (thanks to hospice) for several months and then go to hospital and peacefully check out! We'll see.
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Anne- you said it- our homes should be a safe haven... even tho i live in an apartment (right now) i dont want my kids to thing "thats the room mom died in" refering to which ever room i am in... Thats why being away from home makes sense to me right now... maybe in a few years that will change....
Lena- Yeah i hated every minute of the ride to rads which for me was 45 minutes each way... It sure did take a lot out of my day! I would say cancer did ruin my summer last yr when i was first dx because i had bought water park tickets (season passes) for me and the fam in feb- pain got really bad in april, dx in july with cancer, everytime we made it up to the city with the water park (3 hrs away) it was to see which ever dr for whichever scans. We ended up ONLY going to the water park 2 times! Very bummed out over that. This yr we got sea world passes and i dont give a crap what i feel like i am going NO MATTER WHAT lol (i have my days where i am miss gloom and doom LOL) BTW i dont think it was the rads that made me tired but the LONG drive!
Suze i wonder that too- like could i be hurting them more to leave gifts behind or will they look forward to it and see it as a positive...
Alpal i think this is the artical you're talking about http://www.dispatch.com/live/content/local_news/stories/2010/06/06/letters-from-mom.html
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Thanks so much!
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i teared up reading that artical... it just reinforces the fact that we are so important to our children- i think had her mom not written her those letters she might have had a harder time coping with her husbands death... Her mom gave her the coping skills after she passed...
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One of my friends mother dies from cancer when she was young. Knowing I am stage IV, she told me how much the letters her mother wrote to her mean to her. She said when she really gets to missing her, she gets them out and reads them.
I also do not want to die at home as I think that would bother my daughter who plans to live here. One statement she made was also "I'm I going to come home and find you dead, what do I do?" She is 17 now, but still too young to have to deal with much from a dying mother.
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I noticed all who said they didn't want to die at home mentioned that they thought it would be a burden or upsetting to their loved ones. I think that opens the door to talk with the family members about their feelings.........they might agree or perhaps they would consider it more difficult in a hospital setting.
I think the person who visited and talked with Hospice folks made a wise practical decision. Visiting a hospice and talking to hospice workers when the time is right would give us the full spectrum of information to make a decision on.
Personally I dislike hospitals with a passion and I think I'd prefer hospice support in my home but I'm nowhere near that decision yet, but it's food for thought.
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One thing that I find amazing about Hospice workers (and over the years I've talked to many) is they really feel strongly about what they do and like what they do and believe in what they do. One of the best nurse practioners I've ever met was a man named John at my former Onc's. Prior to that he worked at Hospice for many years.
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Alpal and texasrose - thank you for the link. It gives much food for thought. I think balance might be the key. Special letters and gifts for the big milestones, but maybe not for every year. Ugh I tear up just thinking about it :-(.
Chickadee - if my kids were older, I'd stay home no question. But they are so young, I worry about the impact of knowing "mom died in that room". My oldest (10) already believes our rainbow bridge doggie sleeps with him at night (and hey, she just may well!), they are so impressionable.
I'm not near this yet myself, but I know that can change on a dime. I truly appreciate you all talking about this with me...I'm "still" Stage III, so my family won't yet listen, but I'm so close to Stage IV, with an aggressive pathology, that I can't help but feel the need to talk.
You are all amazing.0 -
So I guess, I am the crazy one with all the cards, letters, gifts, videos for my kids! I do worry that it will be too morbid for them so I told my husband to do what he feels is best for them. They are all there and can be shared when appropriate.
I have made a point to talk to people (mostly women) who have lost moms at a young age, and they have all said they would have liked to have more things like this from their mom. I have completed a mom legacy type journal.....it has a few hundred pages of questions for which you then write a response. You can get one at Hallmark. One woman told me that she has so many questions about her mom....simple things like her favorite colors, what her first date was like, etc, but had no answers. This "journal" takes care of a lot of that stuff,
My kids are so so young that they will likely not even remember me at at all (especially my daughter). In some ways I think that it will be easier on them that way. (sob sob)
Thanks, all. Great topic even though I hate we have to think about all of this stuff.
Lori
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lorieg: i think we instictively know the right thing to do for own children, based on the type of people they are, so if you want to do what you are doing, maybe that is the best you can do for your children..go with your instincts, nothing is right or wrong...xxxx and thankyou for the hallmark idea, and those simple questions i would not have thought to write about, but which i see i would have liked to have known about my mother
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