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Hospice experiences?


YaelAldrich
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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.  

...

 

Cancer is horrible.  

 

I'm so sorry.  Sending  :grouphug: and prayers your way through this difficult time.

 

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).

 

Sending :grouphug: and prayers for you and your whole family as well.  Take care.

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I'm so sorry you're going through this.

 

If you delay a visit, my question would be, are you ok with her passing before you get there? You may very well be and that's totally fine. My dad passed Monday. I didn't get here in time for the last goodbye, but it's ok. He knew I loved him, he was in bad shape for a while, and we did all we could to get here it just didn't work out. I have peace about it, and no guilt, and you may be in the same place with your sister. If you are, then don't beat yourself up on timing.

 

If however, you're not ok and need to see her, then go now. The cost and inconvenience will mean nothing in a year. Go. Stay at a hotel to give yourself some down time. But go. Even if it's a day long trip. Then go again later if you can. Give yourself some grace, too. This is really hard and there's no perfect way to navigate all that you have on your plate. ((Hugs))

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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.  

 

I'm so sorry.  Many hugs for you as you do this important work. :grouphug:

 

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So sorry to hear this news.

 

I would get hospice involved ASAP. They can get everything planned and either start the care immediately or just be on standby with a plan in place when it's time to start. I learned in one of my health courses that only a very small percentage of people that are eligible receive services and when they do, it's often very late. For my aunt that we were caring for, It was like a team of angels that swooped in to take care of everything she needed. It was an enormous blessing. If her immediate family is in shock or does not know what to do for her at this point, I would take the reigns for them.

 

As far as the trip, I would be worried that she cannot physically handle that. For my cousin that just passed from the same thing, we had purchased a spa gift certificate and also one to a very high end restaurant for her and her husband (she was also stage IV but was feeling fairly well at the time).

 

Also, I highly recommend these fingerprint necklace kits. We made them a few minutes before my aunt passed away. They are expensive but something I wear often and turned out beautifully. You need one kit per necklace you want to make. When a friend passed, the funeral home recommended a company that they have a connection with and I did not like the results as well (fingerprint was scanned). The kits I'm referring to are the actual print on each pendant. Hope that makes sense!

 

https://www.pricelessprints.com/

 

 

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I'm thankful you are going to see your sister.  Hospice was an enormous blessing in the only experience I've had with a loved one using it.  They were angels of mercy.  I personally found, the act of saying goodbye to my loved one to be a profound gift.  Everyone who has died in my life previously was very sudden where my dear friend's death allowed me the gift of saying goodbye.  It was one of the hardest things I've ever done but it truly was an incredible blessing too.  Your sister and entire family will be in my  prayers. :grouphug:

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I am sorry, OP.  This is a very tough time for you.  <<Hugs>>.

 

Hospice experience:  My mom's situation was close to your sister's - unexpected diagnosis of cancer of the everything.  She went into the ER because she thought she had something caught in her throat.  Nope, esophageal tumors, lung tumors, tumors everywhere.  My mom was frantic about the thought of being "trapped" in the hospital to die, so we brought her home to my house with a gastric tube thing for nutrition and an oxygen tank.  What a mess.

 

It took about 10 days for my mom and dad to come to grips with the concept of hospice and to agree to let me call them in.  Mom really couldn't make decisions due to pain and dad wasn't in a much better place mentally.  Those 10 days were awful - mom was really sick and in terrible pain and I was trying to do all the care myself because they couldn't afford help and dad couldn't manage much.  Once we brought hospice in, things got much better.  Strong pain meds could be prescribed to keep her comfortable.  Nurses came to the house check on her and were able to help with the swelling in her legs,  A home aide came three times a week to give her a sponge bath.  Hospice even provided all the nutrition stuff and tubes.  Everything was paid for by mom's Medicare benefits.

 

We had 6 weeks on hospice care at home before my mom died one night in her sleep.  After her death, the hospice nurse came to the house, did all the necessary things to remove tubes and such and contacted the mortuary folks for us.  Hospice arranged to have all the medical gear picked up afterwards and submitted paperwork like the death certificate.

 

<<Hugs>> again.  

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I'm really glad you're going. Fwiw, I would find someone in your congregation, anyone, to take care of what your family needs if you find you need to stay longer once you get there. Once people aren't eating, they don't last long. It's good that you'll get to be with her. 

 

And, fwiw, the hospice may also have a jewish support person if you ask for one. They care about *you* as family and your needs too. You can talk to them, ask for support, etc. And your poor BIL, what a hard situation. It's no wonder he's depressed and overwhelmed. Do they have arrangements made? That might be what you end up doing. Your BIL may need help. 

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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.

 

In your position, I'd seek an exemption from halakha under the principle of pikuach nefesh, which makes caring for another (and certainly a family member) whose life is in jeopardy the greater mitzvah. What rabbi would disagree?

 

I'm very sorry for the anguish and worry you must be feeling.

 

Warmest wishes,

 

Bill

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Yael, I don't have a lot to add, but wanted to send my condolences and let you know that my prayers will be added to the many already being said for you and your family.

 

My parents have both passed away in the past couple of years, and my in-laws before that.  Know that your being there will mean so much to your sister, and that your presence will be a big help in ways that none of you will foresee.

 

I was able to go be with my brother and SIL when my mother had about a week to live; hospice was already in play and helping tremendously.  Even so, having another capable adult in the home to "take shifts" watching over mom, taking turns "on call" at night, administering pain and antianxiety meds, playing music to calm my dad -- all of those were tasks that were tiny and insignificant on their own, but it was such a relief to have another person sharing them when bro and sis were at the end of their reserves. 

 

I pray that you will have precious, irreplaceable time with your sister, moments and hours that you'll treasure.

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Update:  As of Wednesday evening, it looks like my sister after some deliberation by the hospice will be taken to the hospice facility  [ETA:  at 11pm] rather than be at home.  [ETA:  Her breathing is labored and she cannot swallow in addition to not being able to get up by herself.]  My angel, the elder in her congregation, pushed and pushed the hospice people to do the intake today rather than waiting until Saturday.  She's also being the support for my sister's husband and my parents since I am not there yet.  May G-d bless her for all she is doing.

 

I drove from Boston to Monsey NY today getting the last of the bar mitzvah shopping done and to purchase my son's hat.  Thank G-d, everything was done easily and quickly if not cheaply.  My husband is due in from his trip this evening.  We will talk, get our schedules worked out and he will take me to the airport tomorrow morning.  

 

My mother found someone in her congregation that wanted to sell two plots in a cemetery.  The price is right (there is only a small insurance policy my father took out on both of us in our infancy to pay for any costs, then it falls to us) and the sellers are coming up tomorrow to transfer the plots to my parents.  Now I will have to locate a funeral home to work with.  She wants to buried next to my sister (my dad wants to be cremated).   :(

 

My parents are arguing about everything under the sun.  I tried to reason with my dad and I hope he calms down enough to talk and treat my mother with kindness.

 

Edited by YaelAldrich
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:grouphug: Safe travels.

 

And you may find spending time with her at the hospice facility allows you to be more fully "there," in the more neutral setting, than you would have in the midst of the competing claims of the household.  I hope so, in any event.  So grateful to the elder angel, and holding you all in the light.

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I'm out of likes, but it sounds like things are moving in a good direction.  Really happy that the elder was able to push hospice for an admit.  That will likely make her more comfortable, as well as make things easier on your BIL and your parents, I think.   

 

Really happy you were able to get your bar mitzvah shopping finished, that must be a relief and will make it easier to go and not worry about those things.

 

Still praying for all of you.

 

:grouphug:

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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! You're teen will get over mono. Your sister isn't going to get over her cancer at this point. Go spend as much time with her as you can NOW. It is so very difficult to lose a family member. I remember that well from when my Dad passed away, due to cancer, in 2003. I was so glad I had put my life here on hold to go be with him. If they (you, someone) can get Hospice set up, it is a GOOD thing. And hospice doesn't necessarily mean dying away from home. When Dad was sick, Hospice came to him, at his home. The nurses were amazing and always welcome. Such a help to my stepmom and my dad! Go. NOW. Be with her and help as you can but mostly just love on her as her sister.

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Update (Thursday night):  I got here to the hospice from the airport and grocery store.  She was unconscious and her breathing was agonal.  My parents and her husband were there.  Mike (her husband) said she  woke up early this morning and pulled out her med lines and IV and tried to leave the  room.  They get her back in her bed and called him.  He came and then they tried to feed her. She couldn't swallow and then had a seizure.  They gave her lots of meds and she fell unconscious.  She only woke up once today when her mucous secretions started to suffocate her.  ETA: Her breathing while still congested is not agonal anymore, thank G-d.

 

My parents purchased a pair of plots for a very reasonable price and this afternoon my father and I went to get a casket and all the services needed.  

 

Everyone here is wrung out.  I am sitting with my sister tonight.  She has had a good number of friends come to visit.  I wish she were awake to enjoy them.  Her best friend is driving up tomorrow.

 

The doctors have prepared us that she won't be here much longer.  I wish I had been able to see her while she is awake, but I can escort her to the next world.

Edited by YaelAldrich
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So glad you are able to be there.  

 

:grouphug:

 

Even though she's not awake, I know she knows you're there.  I hope she is able to be with you more tomorrow.  

 

Praying for you all and for a peaceful transition when it is time.  

Edited by umsami
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