Topic: A place to talk death and dying issues

Jun 9, 2011 03:47PM Chickadee wrote:

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.

Jun 9, 2011 05:14PM Lena wrote:

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.

Jun 9, 2011 09:01PM thats-life- wrote:

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 :)

Jun 9, 2011 09:28PM Suze35 wrote:

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?

Jun 9, 2011 10:35PM Rach958 wrote:

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,
Rachael

Jun 10, 2011 03:41AM ma111 wrote:

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.

Jun 10, 2011 04:13AM chrissyb wrote:

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

Jun 10, 2011 09:20AM apple wrote:

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.

Jun 10, 2011 11:50AM - edited Jun 10, 2011 11:51AM by Lena

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!)

Jun 10, 2011 12:00PM ma111 wrote:

I like dying on the boat.

Jun 10, 2011 01:32PM Alpal wrote:

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.

Jun 10, 2011 05:15PM Alpal wrote:

Thanks so much!

Jun 10, 2011 07:01PM ma111 wrote:

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.

Jun 10, 2011 09:38PM - edited Jun 10, 2011 09:39PM by nurse-ann

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.

Jun 10, 2011 10:38PM lorieg wrote:

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