Topic: My Lovely Sister

My sister has been in Hospice care for 3 weeks now, because she was doing some dangerous things at home in her increasingly confused state. Previously, she's improved very quickly on admission to Hospice for Symptom Control, but this time she hasn't; instead she has deteriorated rapidly whilst she's been in. She's deeply distressed and begging to come home, even though my house is woefully inadequate for her needs and I'm at risk of going under completely.

Something she said yesterday triggered a memory in me and I asked today if she's still being given the anti-depressants she's been on for many years. I'm aware I'm clutching at straws but the things she's saying (although they may be a result of medication, cancer or a gazillion other unrelated issues) reminded me strongly of things she said the last time she came of the anti-depressants.

The doctor told me they stopped all oral medication last week (abruptly and without consulting her carer [me], her family or her doctor) because of difficulties she has been having swallowing. The result is that she is in extreme physical and emotional distress at this crucial phase of her palliative care and I am screaming blue murder!!!

They've said they'll reinstate the prescription but that it will take 2 weeks to kick in again. I don't believe that will be the case with my sister, as the last time I got her back on them, she rallied within 48 hours. I know she's dying but she's not dead yet and I do NOT want her to go out crying in despair the way she is now. I can't control her death, or her life until her death, but I can and WILL do everything I can to help her leave peacefully, when her time comes.

I'm so angry ... and upset ... and distressed ... and hopeful ... and (yes) despairing myself ...

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Julia, I am so sorry and I completely understand as I went through a similiar situation with Teddy in Hospice. Please, I speak from experience, I don't care what you have to do but INSIST that they do all in their power to get her under control. I don't think you should handle this at home. If she cannot swallow what ever happened to crushing pills or liquid meds! OMG! I am livid for you as it brings back my bad memories. I only wished I had thought to bring Teddy's Morphine from home as I would have plied him with it and no one would have known. Yes, I would have, it was that bad. My heart goes out to you but do what ever you have to do! Julia, be strong and if you need to take over the care the best you can right where she is!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Lovely Sister

Thank you, Lainy. I will be strong. XX

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Dear Julia,

I am so sorry for your poor, dear sister.  But I am happy she has someone like you in her corner.  I know you will help her to be comfortable. I will pray for God to help you both through this difficult time. All the best to you and dear Susan.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Lovely Sister

Julia.....I don't get it.  If things can't be taken by mouth do we stop all medications?  There are ways to work around it.   Injections or suppositories where applicable? 
I am so sorry, Julia.  Losing Susan is about as difficult as it can get; the added stress of watching her suffer, needlessly, can put anyone over the edge.  I wish for strength to continue to guide you and for this situation to be resolved immediately.
Hugs and more hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Lovely Sister

Bless you all, thank you. X

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

7 (edited by Darla Fri, 25 May 2012 07:56:43)

Re: My Lovely Sister

Oh Julia,

I just saw this post and am so sorry that you and your sister are going through all of this.  Believe me I know how it feels.   You are strong and a great advocate for your sister.  Keep fighting for her and for yourself.  You are both worth it.  Know that I am thinking about both of you.  Lots of good thoughts and prayers coming your way from Wisconsin.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Lovely Sister

I am so sorry and so angry that you are having to deal with this - this time should be spent being with your sister with as little stress on both of you as possible.  For them to stop meds without consulting you was completely wrong.  She is lucky to have you as such a strong advocate.  I hope you are right and the meds kick in quickly, so she can relax and get some rest (which means YOU can relax and get some rest).  All my thought and prayers are with you both....


Jen

Re: My Lovely Sister

Dear Julia,

I am so sorry to hear what Susan is going through right now. It's not right and i know how hard this all is to cope with. But you are doing everything that you can for Susan and I so hope that you can get her meds situation rectfied. Please stay strong, I know it can be hard to do so sometimes but I am sure that you will. You know that we are all here for you always and I am thinking of you, Susan and Nanette.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Lovely Sister

Dearest Julia,  I have nothing more to add to the previous posts. Just want to let you know my heart is with you and your sister at this time. May you both find peace. Love Nancy

Loving my husband from afar.

Re: My Lovely Sister

Thank you, all. Thank God I found this site so early in Sue's journey. You have supported me every step of the way.

I talked to the doctors again and they said they took her off oral medication last week because she was sleeping through her prescribed medication times and their experience is that waking a patient and hassling them to take tablets they can't swallow easily causes more distress than benefit. Quite often they can't wake her, either, so they thought she was drifting into a final unconscious state. The doctor said that, frankly, Sue's consultant thought she had less than 24 hours left when he made the decision, so he believed she wouldn't live long enough for withdrawal symptoms to kick in. But this is Susan and she doesn't dance to anyone's tune (or die when any doctor believes she will - she proved this 6 months ago, when they gave her less than a week to live, and she's proving it again now). They have agreed that failing to alter her "prescribed medication times" to suit HER time schedule and failing to restart the medication when she rallied slightly and started swallowing again was a mistake and they are now doing all they can to rectify the situation quickly. Thanks to advice from you all at CCF, and from AMMF in UK, I've discovered Sue's particular anti-depressants do come in liquid form. The doctor didn't know that, but she's said she'll get some today.

Sue's major battle at the moment seems to be with her "demons" rather than her cancer, I just hope the cancer backs off long enough to give her the strength to win this battle, before she has to fight the next one. If Sue gets her emotional strength back, we all have a chance of her having a peaceful life and, when she decides to go, a peaceful death.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Dear Julia,I am not sure if the restarting of this tablet is such an issue.If they stopped oral meds there must have been a safety issue with the swallowing and also the cough reflex becomes weak so there is a danger of choking.
Also the oral medications dont seem to work that well at a certain point,Susan might not digest and absorb them.Usually anti anxiety medication is mixed with morphine and given via syringe driver and maybe this combo needs fine tuning.The antidepressant may not be available as an injection but haloperidol and or midazolam could be used.
           You sound a bit end of tetherish and you are surely very tired with all this stress.......take care and use your support people!

Re: My Lovely Sister

Thank you, Janet. I'll look into that, too.

You're right; I'm exhausted. I can't bear to see her sobbing and begging to come home, yet I can't bear not to go in to see her.

XX

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Julia, what a wonderful Sister you are. You are a real Blessing. No matter what happens I am praying for SUsan's comfort above all and hope for her to have comfort and Peace. You know that we are all here for you, Be Strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Lovely Sister

Julia,

Just checking in and letting you know I am thinking of you and Susan.  Hoping for some comfort and peace for both of you.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Lovely Sister

Dear Julia,

No wonder that you are so exhausted. I can still remember this time with my dad and I know that you are doing everything possible to help keep Susan as comfortable as is possible. You are strong, very strong indeed Julia. Just to add to what Janet has said to you about the syringe driver and meds, my dad had that also and it worked very well for him, very well indeed actually and he too had the Haloperidol through it.

Am thinking of you loads and you know that we are all here for you.

Much Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Lovely Sister

I got a call this evening that the Hospice is "concerned" about Sue; she hasn't woken since she fell asleep yesterday morning, which means she hasn't had any food or liquid either. They've thought she may be slipping into unconsciousness before (i.e. 2 weeks ago) but she rallied the next day, so this may not be as significant as it sounds but she wasn't in such a weak state then.

They've changed her to an air-mattress, because her sacrum is becoming reddened as she isn't moving (I take it this means to prevent bedsores). Our cousins visited on Friday and yesterday and her friends have been visiting in shifts, with her boyfriend staying in a chair in her room overnight for the past 4 nights. He was going to go home this evening, but since the Hospice called, he's gone back there for a 5th night. I had never realised how much loved Sue is by so many people.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Dearest Julia, you are a wise woman and so I say this to you but with tears. You and Susan fought the biggest fight ever and I sincerely hope she is on her way to Peace. For anyone else who may take this the wrong way, of course we don't want to loose anyone but you and I have been together a long time now and we both know enough is enough. I am sending you all my love, hugs, prayers and what ever else you may need at this time. Be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Lovely Sister

Julia....add to all the love Susanne is receiving, another tidal wave of love from overseas. 
My heart is with you,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Lovely Sister

I am so sorry to hear the news, Julia.  Love and prayers to you, Sue, and everyone else who loves her. My heart breaks for you.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Lovely Sister

Julia,  My heart is with you and Sue at this time. May you find some blessings in these final days and hours. Wanted to say that they should be moving her regularly to prevent bedsores and to make her more comfortable. Love Nancy

Loving my husband from afar.

Re: My Lovely Sister

Dear Julia,

My dad also had the air mattress and it helped keep him very comfortable, and I am sure that it will do the same for Susan. Much love and thoughts coming your way from me.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Lovely Sister

Lainy wrote:

Dearest Julia, you are a wise woman and so I say this to you but with tears. You and Susan fought the biggest fight ever and I sincerely hope she is on her way to Peace. For anyone else who may take this the wrong way, of course we don't want to loose anyone but you and I have been together a long time now and we both know enough is enough. I am sending you all my love, hugs, prayers and what ever else you may need at this time. Be strong.

Thank you, Lainy. I do know exactly what you mean and my heart agrees with you very strongly. Susan is now in a coma and looks very peaceful; the lines of pain and distress have gone from her face.

She looks so beautiful and calm, the thought of her reawakening to this nightmare horrifies me. I can't bear to lose her, but I've told her whatever decision she makes will be the right one. If she wishes to keep fighting, I'm there with her, but if she chooses to let go, I'm there with her, too.

What I find most traumatising is when she's awake (if you can call it that) and in deep distress. When she's peacefully asleep, I cope relatively well. I can't deny it will be a relief (of sorts) for me when she's no longer in pain.

Thank you all for being here.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My Lovely Sister

Julia, I understand completely. Teddy never went in to a coma but was really not there for about his last 5 hours. His eyes were open but he never blinked. I just want to say that when he passed his face just glowed, like when he was younger. There was not a wrinkle or sick look, it was beautiful. Do not be afraid Julia, this is the priviledged time, and Susan will make the right decision. Not sure what, but it is almost like she is waiting for something or someone. You know I am a nut anyway but it won't surprise me if she finds Teddy with a place for her waiting at his Sicilian restaurant. I remember when Jenn from Calgary told me that before her Father passed he dreamed of a table full of food! Yep, we both believe he saw Teddy. Keep hanging in dear friend and keep tqlking to Susan, she does hear you.  Wish I could just pop over and give you the biggest "Teddy" Bear hug!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Lovely Sister

Julia...speaking softly and touching her gently will comfort  Susan.  She knows that you are there.
For there is no friend like a sister, in calm or stormy weather. ~ Christina Rosetti

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER