Hospice experiences?

[YaelAldrich]

I may delete this, so please don't quote.

 

My sister has Stage IV breast cancer and all the chemo/medications have stopped working.  She has end stage liver failure due to the tumors on her liver.  This was somewhat of a surprise as last week Wednesday they were going to prepare her for gamma knife surgery for her brain tumors and then on Friday she was told that her liver was so bad there was nothing they could do.  She was told to get set up with hospice.  She called me with the news on Friday and we talked (and cried). She mentioned she and her husband wanted to go to Charleston SC as this was a special place for them.  I encouraged them to go for the weekend (and mentioned my husband and I were willing to pay for it.  We have paid for groceries, random spending money and cable for the last two years.).  They said they would go.  I spoke to her again on Saturday night and they said they didn't go.  Then I spoke to my mother Sunday afternoon and she said they were going.  Then I heard from the elder of her congregation (they're Bahai) that they weren't going this morning.  Then I spoke to her for a minute this afternoon (Tuesday) and they didn't go.

 

I had hoped to go down there with my kids to see her (for what I am thinking might be their last time) and help her set up hospice and any future needs (funeral, housing).  Now I can't see getting down there this week at all.  My schedule is kinda crazy with my oldest in high school (and is recovering from mono), my husband (who will be travelling off and on the rest of the month) and our second son having his bar mitzvah the first weekend in February with all the prep that goes along with that.  I obviously don't expect her to cater to my life, but the whiplashing back and forth is difficult.  I know her husband (who has untreated anxiety and depression) isn't going to be able to help her with very much in the way of planning and certainly not money. My parents have very strong opinions which will clash with the situation at this time and I have been trying to run interference and keep things as neutral as possible.  His parents are disabled both mentally and physically and will be no help.

 

Can anyone help me get some idea of what I need to know to help if they let me?  Nothing is planned as far as I know and they don't have any money.  Anything Medicare or a life insurance policy my father took out on her won't pay for will have to come from family.  I honestly don't think she will be with us much longer.  My mother says the swelling in her legs is very bad, she is losing weight rapidly, and she sounds drugged and very, very tired.

 

Any advice (please be gentle) and experience would be very welcome.

 

Edited January 18, 2017 by YaelAldrich

[prairiewindmomma]

I mean this gently, she may not have much time left and she may be unable to go to Charleston.  The last few weeks and days are very up and down.  Getting set up in hospice is a process, and dying away from home complicates everything. (I say this as someone who traveled with a terminally ill daughter cross-country, alone, with a baby, just days before she passed.)

 

If you want to see her before she is gone, drop everything and go. I say this very sincerely.  If it's in her liver, the filtering process is probably stopping and her mind and body will begin to shut down. Many cancer patients are in a twilight or light coma state in that last little bit.  There is no way to predict things, but sooner > better.

 

Grief and death complicates all relationships.  We had many relationships fall apart when our daughter was terminally ill because others couldn't handle their own grief.  I still don't understand why the people who we needed to be there for us couldn't be there, but I've chosen grace & love at this point.

 

Go. Do laundry. Make a meal. Hold her hand. Talk.  Make warm chocolate chip cookies.  Look at photos.  Ask her and her husband what you can do for them while they are there--reaching out to friends to share the news, setting up things at a funeral home, whatever.

 

They may put you off on trying to come.  Say that you want to visit, bring in a meal and some flowers, and you won't stay long.  Neither of them may be very functional, emotionally, right now.

[Ethel Mertz]

I'm just going to throw some random thoughts out there. Take what is helpful (if anything). If there is any way you can rearrange things to get down there, I would do so as soon as possible. Even if you have to reschedule the bar mitzvah or cancel other events to do so... Once folks start with the hospice medications, things often move more quickly toward death than anticipated. The sooner you're able to go there, the better quality time you'll have to be with your sister. It doesn't take much work to set up hospice. I had a 20 minute meeting with hospice when I signed my Mom up and there was even less to do when we asked for hospice for my Dad (he was in hospital then).

 

Hospice has access to good drugs to help manage pain and anxiety (including sub-lingual morphine - "roxanol" - and also, ativan gel that can be rubbed on an arm. If you have a choice, go for a non-profit Hospice. There will be someone from hospice checking in each day.

 

I am so very sorry your sister is having to go through this.  :grouphug:  to you and yours.

[BigMamaBird]

I don't have any advice for you.  

 

I was 16 y/o when my Grandma came to our house to die.  Hospice came at all hours and were absolutely wonderful!  They even sat and talked with my brother and I.  They advised my parents what to do and who to call when she passed.  I honestly believe that Hospice folks are some of the best people on the planet. 

 

I'm so sorry what you're going through.  Say anything and ask anything of the Hospice people, that's what they're there for.  They WILL help.

[prairiewindmomma]

One last thought that popped in my mind and I feel I should share: the average stay in hospice (from entry to exit at death) is about two weeks.  The statistics are skewed a bit in that some join several months out, but most enter in close to death, when all viable treatment options are ended.

[GoVanGogh]

We are going through similar with a relative with advanced cancer. I wish I had some great advice, but we are struggling with it, too. I do know that cancer is sucking all of our realtive's energy out of them and they can't make decisions. At all. Things just need done and planned for them. Hugs! I am so sorry you are dealing with this. Cancer sucks.

[Pawz4me]

:grouphug:  :grouphug:  :grouphug:

[YaelAldrich]

I mean this gently, she may not have much time left and she may be unable to go to Charleston.  The last few weeks and days are very up and down.  Getting set up in hospice is a process, and dying away from home complicates everything. (I say this as someone who traveled with a terminally ill daughter cross-country, alone, with a baby, just days before she passed.)

 

If you want to see her before she is gone, drop everything and go. I say this very sincerely.  If it's in her liver, the filtering process is probably stopping and her mind and body will begin to shut down. Many cancer patients are in a twilight or light coma state in that last little bit.  There is no way to predict things, but sooner > better.

 

Grief and death complicates all relationships.  We had many relationships fall apart when our daughter was terminally ill because others couldn't handle their own grief.  I still don't understand why the people who we needed to be there for us couldn't be there, but I've chosen grace & love at this point.

 

Go. Do laundry. Make a meal. Hold her hand. Talk.  Make warm chocolate chip cookies.  Look at photos.  Ask her and her husband what you can do for them while they are there--reaching out to friends to share the news, setting up things at a funeral home, whatever.

 

They may put you off on trying to come.  Say that you want to visit, bring in a meal and some flowers, and you won't stay long.  Neither of them may be very functional, emotionally, right now.

 

 

I'm just going to throw some random thoughts out there. Take what is helpful (if anything). If there is any way you can rearrange things to get down there, I would do so as soon as possible. Even if you have to reschedule the bar mitzvah or cancel other events to do so... Once folks start with the hospice medications, things often move more quickly toward death than anticipated. The sooner you're able to go there, the better quality time you'll have to be with your sister. It doesn't take much work to set up hospice. I had a 20 minute meeting with hospice when I signed my Mom up and there was even less to do when we asked for hospice for my Dad (he was in hospital then).

 

Hospice has access to good drugs to help manage pain and anxiety (including sub-lingual morphine - "roxanol" - and also, ativan gel that can be rubbed on an arm. If you have a choice, go for a non-profit Hospice. There will be someone from hospice checking in each day.

 

I am so very sorry your sister is having to go through this.  :grouphug:  to you and yours.

I was ready to hop on a plane last Sunday night with my kids (we are a 12 hour drive from them), but since she was supposed to leave, I didn't make the reservations.  Now with all the flip flopping, I cannot get there until next Sunday night at the earliest.

 

I wanted to do all those things, especially as I had been going down every 6 weeks and spelling my parents from driving her places (she had seizures off and on and couldn't drive) and cleaning her house, etc.  My parents are in shock and asking me to coordinate everything, but I can't if I don't know what's going on.  

 

She and her husband are also in shock and I don't know how much if anything they've done. I asked her on Sunday if they called Hospice and she said they did but didn't get hold of anyone over the weekend.  I hope to speak to her again tonight.

 

And to top it all off, I am worried about her husband.  He's been dealing with a large amount of anxiety and depression he refuses to get help for.  He claims it will hinder his creativity.  He's been getting money from us, my parents, and his parents as he cannot get out of bed to work.  He's behind in his car payment and her disability has been paying the rent and utilities.  When she dies, what will happen?  We cannot afford to pay for his rent, utilities, car payment, groceries, and everything else.  

 

Thanks to all those who are responding.

[EKS]

I am so sorry.

 

My best friend died 10 years ago from breast cancer and at the end it had gotten to the point that your sister's is at--brain and liver mets.

 

My advice is if you want to see your sister again that you go immediately.  Things can progress very rapidly, and the brain mets mean that her memory and personality may change as well.

 

I know my friend just appreciated being able to talk about anything--the past, her worries, her husband and daughter, death, whatever--without having to censor herself.

 

:grouphug:

[PrincessMommy]

I mean this gently, she may not have much time left and she may be unable to go to Charleston.  The last few weeks and days are very up and down.  Getting set up in hospice is a process, and dying away from home complicates everything. (I say this as someone who traveled with a terminally ill daughter cross-country, alone, with a baby, just days before she passed.)

 

If you want to see her before she is gone, drop everything and go. I say this very sincerely.  If it's in her liver, the filtering process is probably stopping and her mind and body will begin to shut down. Many cancer patients are in a twilight or light coma state in that last little bit.  There is no way to predict things, but sooner > better.

 

Grief and death complicates all relationships.  We had many relationships fall apart when our daughter was terminally ill because others couldn't handle their own grief.  I still don't understand why the people who we needed to be there for us couldn't be there, but I've chosen grace & love at this point.

 

Go. Do laundry. Make a meal. Hold her hand. Talk.  Make warm chocolate chip cookies.  Look at photos.  Ask her and her husband what you can do for them while they are there--reaching out to friends to share the news, setting up things at a funeral home, whatever.

 

They may put you off on trying to come.  Say that you want to visit, bring in a meal and some flowers, and you won't stay long.  Neither of them may be very functional, emotionally, right now.

 

This.   I would try to drop everything and go.  Liver is very fast.  I'm so sorry.

 

 

 Has hospice care already started?  If not, make an appt. with Hospice and be there the day they come to to intake.  It's usually a long process, and it may take more than one day of visits.  They can usually do it within a day of the person being admitted to hospice.  Try to be there for the initial visit.  Usually hospice can be there as much as the family needs, and it sounds like it's going to be needed.  I would set up as much as they can provide.  The social worker and/or nurse will talk with you and your sister about family dynamics (if they don't ask, offer the information - it helps them).  

 

[Ethel Mertz]

One last thought that popped in my mind and I feel I should share: the average stay in hospice (from entry to exit at death) is about two weeks.  The statistics are skewed a bit in that some join several months out, but most enter in close to death, when all viable treatment options are ended.

 

Absolutely what she said. When hospice enters the picture, many patients relax in to the process of letting go and body systems shut down. 

[TechWife]

You need to drop everything and go. Reschedule what you can, cancel what you can't. When you get there, if she hasn't already contacted hospice, do that for her. They will come out to the house, assess her needs and provide for them. They provide not only medication, but if she would be more comfortable in a hospital bed or needs a bedside commode, they will provide those things as well. They will have a social worker that can provide counsel and will have resources to help the family. 

 

 

Go, stay as long as you can. Comfort, cooking, cleaning. 

 

 

:grouphug:  :grouphug:  :grouphug:

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Edited January 18, 2017 by TechWife

[YaelAldrich]

I can't change the date of the bar mitzvah.  It's been in the works for over a year.  My son has prepared the entire Torah portion by heart.

 

 

[bettyandbob]

:grouphug:

 

Honestly, if I were in your situation I'd do what I could to drop everything and go help her. To the point I'd be talking to the Rabbi about the schedule for the bar mitzvah (and I know that is kind of a nightmare to consider). I'd be looking for people who could help my family so I could go. I know changing the date of the bar mitzvah is highly unlikely, so I would ask "can someone else put together the last details?"

 

Do your kids want to visit with her one last time. Does your sister feel up to seeing them again--she may want to, but be unable. If she wants them, pack them and go with them and then bring them back and return alone to just help her. 

 

It doesn't sound like you are going to be able to assess how much you can do until you go. 

 

 

 

 

[TechWife]

I can't change the date of the bar mitzvah.  It's been in the works for over a year.  My son has prepared the entire Torah portion by heart.

 

Then go now, return for the bar mitzvah and go back to your sister if needed. 

 

Your husband can reschedule his travel. Companies do understand family emergencies. 

[Ethel Mertz]

I can't change the date of the bar mitzvah.  It's been in the works for over a year.  My son has prepared the entire Torah portion by heart.

 

Thankfully, the bar mitzvah is the first weekend in February about 2 weeks away. Can you drop other things and get there this week? What would you have to do to make that happen? 

 

Don't worry about her husband's financial well being right now. You can figure that out later. Just focus on having some time with your sister. 

[Guest]

I am so sorry to hear of this ... situation? I don't even know what to call it.  Just so sorry.  

 

I have some limited experience with hospice, but the first thing I want to say is that the practices and rules vary from state to state, so the information you get here might not be accurate for this particular situation.  (There's that word again.)

 

My dad died in Idaho last year; he had been on hospice for 6 months, but it was mostly "well check" and so on.  Things were very different in Idaho than they are in Washington, and so I was not much help in giving advice to my sister...I didn't really understand the situation and was using incorrect assumptions.

 

That said:  we had bad and good experience with hospice.  I'll tell you the characteristics of the bad.  They were not bad people, or uncaring.  The particular hospice was not set up well, business-model-wise.  They were based in a town 50 miles from where my family lived, so the big shots never met my dad and the communication of needs was poor between the local (overworked) hospice person and the head office.  Lots of confusion, including their cuttingly dad off the day before he entered the hospital for his final stay.  

 

Being in hospice saved my parents a ton of money.  They aren't rich; they are not stone cold broke either.  But there is a lot of equipment that can be helpful for a very short time at the end of life, and hospice paid for it all.  

 

We switched to a locally-run hospice and things turned around dramatically.  Dad got a LOT of care and attention in the hospital and then in the skilled nursing center--that whole time being 3 weeks.  The local people had a lot more feet on the ground, so there were specialists in different kinds of services that could help my dad in his particular needs.  The other hospice had one lady who had to be a jack of all trades.  Find a hospice that is people-dense.  

 

When my dad was in the skilled nursing center, the hospice was actually most helpful to my mom, in helping her find out what she needed to think through, in getting her to talk about my dad (which was very helpful in her loss), in pushing for specific care options that we did not know about.  And they came to my dad's bedside after he departed this life to be with my mom and sister as they said their goodbyes.  They also followed up for 3-6 months to make sure my mom was doing OK. 

 

The skilled nursing center was *wonderful*.  We looked at 5 of them and chose one on very short notice based on less than perfect research...when I saw the director of the center wheeling a patient to dinner, I knew there was something human there.  In addition, the other skilled nursing centers wanted their $10,000 for the first month before my dad would be transferred...but it takes a couple days to get that kind of money together, and the hospital wanted him checked out.  The one we chose, I explained the situation to the director, who met me at the hospital, and he raised one eyebrow, and asked me, "Haven't you ever heard of post-dating a check?"  So human.  They took good care of my dad, and the hospice people were the ones who sent in the initial recommendation and helped us steer away from 3 of the others.  So there was that, too.  

 

God be with you and guide you and give you a good last meeting with your sister.  I am so sorry.

 

[PrincessMommy]

I can't change the date of the bar mitzvah.  It's been in the works for over a year.  My son has prepared the entire Torah portion by heart.

 

Can you go for a day or two before the Bar Mitzvah? 

 

Is there a friend you can lean on to help you with some of the preparations that would free you up for a day or two?

Edited January 18, 2017 by PrincessMommy

[umsami]

So, typically people can be referred to hospice when their expected length of life is six months or less.  If they last longer, it doesn't matter, but that is the prognosis.  To me, it sounds like your sister may have a lot less time and I'm very sorry to hear that.

 

You've been such a wonderful sister and you have so much on your plate as well.  It's tough.  I don't want you to live with regrets, though, so I would really try to go down there as soon as possible as it sounds like her time may be short.

 

She should have been given a referral to at least one local hospice organization.  Call them.  They will help you and her husband through this. <3

 

But yes, please go soon.  

 

I have some Bahai materials and a prayer book of various of Baha'ullah's prayers and such.  If you think that will be at all helpful to you, PM me and I'll send it to you.

[YaelAldrich]

I should go down even though I have been asking to help and go down but they haven't accepted my request?

 

I hope we can clear this up. I could get down there but as an Orthodox Jew who keeps the Sabbath, my hands are tried with regard to phone calls, computer, driving Friday night through Sat night.

 

My husband is out of town until tomorrow night.  I have get my husband to get tickets (he has lots of miles).  It takes time.  Which I know she doesn't have.

[YaelAldrich]

Can you go for a day or two before the Bar Mitzvah? 

 

Is there a friend you can lean on to help you with some of the preparations that would free you up for a day or two?

I could leave almost anytime.  The most important stuff has been taken care of.  I have lots of friends ready and willing to take on everything else.

[Guest]

One other thing:  and I know I am being all brass tacks about this.  But I hope it helps.  

 

My sister had primary long-term care of my mom and dad; they live together.  But when the emergency hit (I *happened* to be on my way out to see them), I sort of swooped in and did all the ... brass tacks stuff.  My mom would have been overwhelmed with all the decisions that had to be made and my sister could have done it, but she has a job to hold down and cannot afford to lose it.  I was there 8 days, and did everything from calling the ambulance (from the road) to hospital intake to sitting up all night with dad so they could sleep, to gathering information about options, both what we needed to do and where we could get those services, to deciding on the skilled nursing center and getting the cash together and the whole thing.  And then I swooped out, after I had the chance for a last talk with Dad.  I had planned on being gone 3 days...  But that swoop was a godsend for my mom and sister...it would have been an overwhelming amount of time spent and information gathered, sifted and decisions made in a short amount of time.  We were a really good team.  Then, my sister and mom could just go visit dad in his last days and not have to sign papers and make decisions.  

 

I'm not saying this because I think I am so great.  I 'm just saying that sometimes a Swoop and the ability to come in and do the things that must be done but are overwhelming to those too close...that's not a bad thing.

 

[umsami]

Yes, go down even though they haven't accepted.

 

They may not understand how short time is or have processed that.

 

Plus, with the upcoming bar mitzvah, this is your chance to go.

 

If you're keeping sabbath, would that prevent you from staying with them and just being there? If you were at a hotel, would you be allowed to call an uber (which is paid over the app) or does that count as handling money?  Even if you'd have to go on Sunday (or Saturday after sunset), I'd work to go then.  

 

Keeping you and your family in my prayers.  

[YaelAldrich]

So, typically people can be referred to hospice when their expected length of life is six months or less.  If they last longer, it doesn't matter, but that is the prognosis.  To me, it sounds like your sister may have a lot less time and I'm very sorry to hear that.

 

You've been such a wonderful sister and you have so much on your plate as well.  It's tough.  I don't want you to live with regrets, though, so I would really try to go down there as soon as possible as it sounds like her time may be short.

 

She should have been given a referral to at least one local hospice organization.  Call them.  They will help you and her husband through this. <3

 

But yes, please go soon.  

 

I have some Bahai materials and a prayer book of various of Baha'ullah's prayers and such.  If you think that will be at all helpful to you, PM me and I'll send it to you.

I know in my heart she is not going to make six months, not even six weeks.  We had plans for her to be at the Bar Mitzvah, but I don't see it happening now.

 

She's pretty devout so she has all the Bahai materials at her home and I have her "elder" (don't know what else to call her) on speed dial right now.  Thank you though.

[bettyandbob]

I should go down even though I have been asking to help and go down but they haven't accepted my request?

 

I hope we can clear this up. I could get down there but as an Orthodox Jew who keeps the Sabbath, my hands are tried with regard to phone calls, computer, driving Friday night through Sat night.

 

My husband is out of town until tomorrow night.  I have get my husband to get tickets (he has lots of miles).  It takes time.  Which I know she doesn't have.

 

 

I would. Some people don't like to accept. And while some people linger in hospice for a few months, I know a few people who were advised to get hospice care and were gone within a couple weeks. So, my thought would be if I wanted to make sure I saw my sister I'd go. 

[YaelAldrich]

Yes, go down even though they haven't accepted.

 

They may not understand how short time is or have processed that.

 

Plus, with the upcoming bar mitzvah, this is your chance to go.

 

If you're keeping sabbath, would that prevent you from staying with them and just being there? If you were at a hotel, would you be allowed to call an uber (which is paid over the app) or does that count as handling money?  Even if you'd have to go on Sunday (or Saturday after sunset), I'd work to go then.  

 

Keeping you and your family in my prayers.  

I don't think anyone has processed but me at this point.

 

I can't stay at their place.  He husband has been upset since we turned down his request for money a while ago unless he sought counseling.  My sister and he have been having big fights over him not going to work or getting help while asking for money from all our and his relatives saying he deserves the money in his situation.  Every time I come to their house and try to help by cleaning up or paying for groceries he is upset at me because he thinks I am judging him.  I can't stay in their tiny apartment for hours much less overnight.  Can't use Uber or even get in a car.  :(

 

I'm calling my husband adn telling him to get tickets for Sunday morning or maybe even Thursday. 

[Plink]

The hospice staff are there to help their patient, but they are also fantastic at helping grieving families navigate the mire of end-of-life planning.  You will feel much better after you have a conversation with your sister's hospice worker.  They can answer all of these questions and more.  

 

 

I'm so sorry. 

[YaelAldrich]

I'm going to a class.  My husband before he gets on his next flight is going to get me tickets for Thursday or sunday.  I'll be back on later tonight.

[zoobie]

The oncologist's office may have a recommendation for a social worker to help arrange hospice. If your sister is on or will qualify for Medicaid, the social worker can help walk through that as well. Do you have POA? Otherwise all decisions default to her husband. She needs to make any final healthcare choices and legal decisions (will?) NOW if she hasn't already. Don't wait days.

 

The husband is on his own once he passes. He can get his own SSDI or do whatever. I would NOT discuss that with him at all while you're down there. Refocus any conversation on the fact that you're there for your sister it's not the time.

 

I'm so sorry. :grouphug:

[TechWife]

I should go down even though I have been asking to help and go down but they haven't accepted my request?

 

I hope we can clear this up. I could get down there but as an Orthodox Jew who keeps the Sabbath, my hands are tried with regard to phone calls, computer, driving Friday night through Sat night.

 

My husband is out of town until tomorrow night.  I have get my husband to get tickets (he has lots of miles).  It takes time.  Which I know she doesn't have.

Yes, you should go down. It sounds like they aren't in a place to know what they need or how and when to ask for help. Go. 

 

Your husband can get a frequent flier ticket for you in just a few minutes online. It isn't hard and he can do it where he is. He doesn't need to wait until he gets home. My husband does this frequently. 

 

Go.

[creekland]

I should go down even though I have been asking to help and go down but they haven't accepted my request?

 

I would.  Their brains are not operating normally.  I wouldn't do anything that might seem offensive (cleaning or whatever).  I'd be there just to listen, chat, and treasure the time we had.  If they asked me to do anything (cleaning or whatever), I would, but nothing I knew would cause tension.  Many things fall under the "small stuff" category not worth worrying about during this time.

 

Tons of  :grouphug:  for you.  I'll be in a similar situation with my mom way too soon.  Her cancer is in her liver too.  

 

FWIW, middle son volunteers for hospice.  Don't be afraid to use them.  He tells me some things about what he does and is glad to help folks make the best at the end of their lives.

[clementine]

I have no advice, but I am so sorry for what your sister is going through.

 

My only experience with hospice was with my FIL - they were angels on earth for us.  We were so grateful for their help with everything.  

 

:grouphug:

[bettyandbob]

With regard to hospice, I think experience varies. For some hospice was amazing. But a good friend had a terrible experience--I don't think her experience was the norm. 

 

 

[teachermom2834]

When my mom went in hospice it took a few days to get it going and it seemed like forever.  I would initiate it as soon as possible.  Those days getting it set up were really hard.  Once they came in it was better but really went so fast.  Even a day sooner they could have come in would have helped.  In the situation again I would initiate hospice immediately.

 

I'm sorry you are going through this.

[Pam in CT]

I'm so sorry.

 

 

I mean this gently, she may not have much time left and she may be unable to go to Charleston.  The last few weeks and days are very up and down.  Getting set up in hospice is a process, and dying away from home complicates everything. (I say this as someone who traveled with a terminally ill daughter cross-country, alone, with a baby, just days before she passed.)

 

If you want to see her before she is gone, drop everything and go. I say this very sincerely.  If it's in her liver, the filtering process is probably stopping and her mind and body will begin to shut down. Many cancer patients are in a twilight or light coma state in that last little bit.  There is no way to predict things, but sooner > better.

 

Grief and death complicates all relationships.  We had many relationships fall apart when our daughter was terminally ill because others couldn't handle their own grief.  I still don't understand why the people who we needed to be there for us couldn't be there, but I've chosen grace & love at this point.

 

Go. Do laundry. Make a meal. Hold her hand. Talk.  Make warm chocolate chip cookies.  Look at photos.  Ask her and her husband what you can do for them while they are there--reaching out to friends to share the news, setting up things at a funeral home, whatever.

 

They may put you off on trying to come.  Say that you want to visit, bring in a meal and some flowers, and you won't stay long.  Neither of them may be very functional, emotionally, right now.

 

All.of.this.

 

Holding all of you...

[ScoutTN]

No advice, but I am so sorry. I hope you can get there soon. 

When my dad was dying, Hospice was amazing. I don't know how we would have done it without them.

 

:grouphug:

[JennyD]

Oh Yael, I am so sorry.  

[AprilTN]

I am sitting beside my mom as I type this.  She is in her final days of life after a long battle with cancer, and we have had Hospice care for her for about 2 weeks now.  

 

If you can go to your sister, then go.  I am not staying through the nights (my sister is), but I have been here with my mom all day for the last 10 days.  I don't regret it at all.  As my mom became weaker and needed more assistance I helped out, and I have spent a lot of time just sitting next to her and reassuring her when she wakes up and needs something.  She is not really communicating anymore, but I talk to her and try to make sure her mouth is not dry and she is comfortable and not in pain.

 

Hospice has been great.  My mom is on Medicare so Hospice is 100% covered including her medicine.  The nurses are so sweet and caring.  

 

My only complaint would be with the other parts of hospice, such as the chaplain and bereavement counselor.  We are religious but we didn't want them to visit.  A few times they came by and it was always at an awkward time, so we had someone go to the door and tell them it was not a good time for them to come in.  The one time that the chaplain came in he stayed too long, and my mom seemed confused as to why he was there.  So if you have your own spiritual counselor then I would probably let them know not to send the chaplain.  I was hopeful that the chaplain would be a comforting presence, but he just wasn't (bless his heart).

 

I'm really sorry about your sister.  Cancer is horrible.  

[Rachel]

I'm sorry you are going through this. The bond with a sister is special, I hope your trip goes well despite the circumstances.

[Just Kate]

I should go down even though I have been asking to help and go down but they haven't accepted my request?

 

I hope we can clear this up. I could get down there but as an Orthodox Jew who keeps the Sabbath, my hands are tried with regard to phone calls, computer, driving Friday night through Sat night.

 

My husband is out of town until tomorrow night. I have get my husband to get tickets (he has lots of miles). It takes time. Which I know she doesn't have.

Yes, you should go. My best friend died of cancer three years ago. When she was first diagnosed, she became very private. We would talk, but she wasn't very open about the whole situation (she died 3.5 months after being diagnosed...I think she was in shock). I offered to visit and she put me off. I finally just started talking directly to her family and they arranged for me to be there (I lived 3 hours away). Those times with my friend were wonderful and I wouldn't trade them for anything. I'm so glad that I went, even though my friend wasn't really receptive to my visiting in the beginning. I believe that receiving a terminal cancer diagnosis affected her deeply (obviously) and she had to take time to process it.

 

I happened to be there the weekend my friend died. It was me, her husband, her then 9 year old daughter, and the hospice nurse. The hospice nurse was amazing. She told us what to expect and helped us to walk through it. I can't even imagine how we'd have handled that situation without her there.

 

I'm so sorry for what you're going through. My heart hurts for you.

Edited January 18, 2017 by Just Kate

[Frances]

I'm so sorry to hear about your sister. Hospice was absolutely amazing when my dad died, I can't say enough good things about them. I really can't imagine going through the experience without hospice. For my dad, it was ten days from intake until he passed. I hope you will be able to spend time with her soon. I'll be thinking of you and your family.

[Guest]

I have absolutely zero advice or experience. But l wanted to extend my love and prayers to your family through this - the logistics are stressful and it sounds like you had a lot on your plate before anything accelerated. I'm so sorry!

[Selkie]

Hospice was a huge help and comfort to us when my mom was dying. I am forever grateful to them for all they did for my mom and our family.

 

I'm so sorry about your sister.  :grouphug: And I'm sorry that the situation is even more stressful because of her husband. I hope you're able to have a good visit with her. 

 

 

[GoVanGogh]

You need to drop everything and go. Reschedule what you can, cancel what you can't. When you get there, if she hasn't already contacted hospice, do that for her. They will come out to the house, assess her needs and provide for them. They provide not only medication, but if she would be more comfortable in a hospital bed or needs a bedside commode, they will provide those things as well. They will have a social worker that can provide counsel and will have resources to help the family.

 

 

Go, stay as long as you can. Comfort, cooking, cleaning.

 

 

:grouphug: :grouphug: :grouphug:

 

Save

Save

We are living day to day with our relative. They go back to oncologist tomorrow and we anticipate they will go on hospice after that appointment. We have been living this way since Christmas - prepared to go out of town at the drop of a hat. We have already gone twice now, spur of the moment, when relative was in hospital and it will continue to be that way until they pass. It sucks to live this way, but we want to be available to them. I make sure all laundry is caught up daily. Pet sitter is arranged. All outside activities are day by day. I am not adding anything to our schedule. We will re-group when we are through this.

We went through this six years ago when anther relative went on hospice with cancer. Life just goes day to day. Enjoy any remaining time with them. Help anyway you can. Lean on friends and family. Laugh. Cry. Life is precious.

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[YaelAldrich]

So my sweet, kind husband got tickets for me while he was stuck on his plane in EWR (Newark).  I'm leaving bright and early Thursday morning and coming back Tuesday.  Thank G-d Trader Joe's carries almost everything I will need for Shabbat (challah, hummus, chicken, wine, veggies, fish, dessert), even in a place with hardly any (Orthodox) Jews.

 

Now I have to take the Bar Mitzvah boy and his homeschooled siblings to Monsey NY (about 3.5 hours one way) tomorrow to get him his hat and kosher candy for the bar mitzvah before I go.  The family will have their Shabbos meals with friends.  People are starting to make their plans to help us for the bar mitzvah.

 

I talked to my sister tonight for a little while.  She sounds a little better. She hadn't had anything substantial to eat in a couple of days (since at least Friday).  She got a good meal at my parent's house today, thank G-d.  Hospice is going to meet her on Saturday. so now I have to figure out if I should stay with her (awkward!) or at my parent's home (also awkward!). 

 

Thank you all for pushing me to get this going.

Edited January 18, 2017 by YaelAldrich

[dirty ethel rackham]

Yael,  Keeping all of you in my prayers.  I am glad that you are able to find a way to go to see your sister and that the wheels are turning for getting hospice involved.  With both of my parents and my dear friend who passed away 18 months ago, my only regret was waiting so long to call in hospice.  There is so much that they could have helped with.

[YaelAldrich]

Please pray especially for my mom.  She's a strong Christian woman (an deacon in her church) (yes,our family is a jumble of religions) and she still believes everything will be fine.  I, too, believe that G-d can do whatever He wants, but I am very worried for her.  Please pray for my father.  He is also a Christian although much less faith-full. He is showing his grief through anger and frustration. I hope G-d gives him the ability to accept what's happening without lashing out at others.  I haven't really talked to my sister's husband so much, but his mental and physical status is in great need of prayer.  Please also pray for my sister in that she continues to have as much peace and grace as she has throughout this whole ordeal (2.5 years).

 

[umsami]

Praying for you all.  Watching a daughter or son die is every parent's nightmare.  <3 <3 <3 

[LarlaB]

Praying for you and your family.... I'm so sorry. thankful you have tickets and will pray that logistics peacefully work out for you- like a road you don't yet see now, you will have the wisdom and grace to navigate at each juncture when the time comes. Additionally for family dynamics for parents and for sister and sisters DH.

May grace and mercy go with you.