Jump to content

# update post 19 Question about pallative care at home?
Sadly my grandfather has passed away

  • Please log in to reply
20 replies to this topic

#1 mum2jp

Posted 16 November 2012 - 08:16 PM

*Sorry this may be sensitive to some*

My grandfather has lung cancer. He is now at the stage wherehe is too weak for treatment and has been referred from his oncologist to a palliativecare team. The nurse has been coming to the house for a couple of weeks but hehad to wait until today to actually see the doctor. The nurse has recommended oxygenfor him at home as his oxygen levels are low when monitored. So we thoughttoday would be a medication review (pain meds mostly) and having the oxygen organized.

Anyway Mum went with him and my grandmother to the appointmenttoday and said she found the doctor to be really awful. He basically said thatthey don’t just give oxygen to anybody because you can only have it free for 3months so he would need to speak to his cancer doctor about how much ‘time’ hethinks he has. Mum told him that paying for it after the 3 months was not anissue. He then asked Mum and my Grandmother in front of my Grandfather (as ifhe wasn’t there) if they would be putting him into palliative care. When mumtold him the plan was to care for him at home he sighed and told her that itwouldn’t be that easy they will need two people full time to care for him. So basicallyNOTHING got done today. So my question is who makes the decisions about what heneeds? The home nurse has recommended oxygen; he needs it to be comfortable.Can this be refused by the doctor? If they won’t provide him with oxygen athome they are basically forcing him to go into hospital.

I know this is an upsetting topic especially for thosehaving been through it but if anyone would be willing to share experiences ofhaving palliative care at home and has any advice about dealing with the systemthat would be much appreciated.

Edited by mum2jp, 30 November 2012 - 10:41 PM.

#2 adl

Posted 16 November 2012 - 08:23 PM

You don't mention where you are? We had my Dad at home and a friend nursed him privately for us

My GF was a palliative care nurse through Western Area Health services, in Sydney, its divided into geographical areas  ...she had patients referred to her , so I think you call the Health Services in your area but surely his oncologist can refer you to these services?

I am sorry to hear about your grandfather and hope you sort it  out so he may enjoy his remaining  in days in peace and comfort at home

#3 Feral Becky

Posted 16 November 2012 - 08:29 PM

Hi OP, I also have a parent with cancer and I am also a nurse.

Recently there have been huge changes about oxygen and a lot of health staff have not kept up. Respiratory physicians are downright against indiscriminate use of  oxygen and accept oxygen sats in the mid 80's and even then at a low dose, like 1 litre nasal prongs.
Nurses are the worst and we think everything would be fixed with a good blast of oxygen.
Recently I have had to rethink on patients with chest pain, if their oxygen sats are OK, they don't get oxygen , but this is VERY slow to catch on.

Doctors trump nurses in decisions and many oncologist/palliative care docs can seem very cold. I guess most of them have zoned out as a coping mechanism.They are human though under all the veneer.

Pain relief is the main goal not really oxygen.

PM me if you need.

Edited by LindsayMK, 16 November 2012 - 08:40 PM.

#4 mum2jp

Posted 16 November 2012 - 08:30 PM

We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.

#5 Feral Becky

Posted 16 November 2012 - 08:35 PM

A hospice for palliative care is a good idea.

#6 mum850

Posted 16 November 2012 - 08:48 PM

QUOTE (mum2jp @ 16/11/2012, 09:30 PM) <{POST_SNAPBACK}>
We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.

Hi mum2p

- ask the home palliative care service if then can lend you a concentrator
- ask them or the pharmacy if you can hire a concentrator
- get him admitted to your local palliative care facility for a brief symptom management admission, they will arrange appropriate oxygen on discharge
-ask your nurse to take it to his//her boss to take it "upstairs"
- go higher up to the hospital.network that rejected your request.

You have not received a good service from this doctor and not all pall doctors are like this. Your request to get O2 to care for your grandfather at home is not only reasonable but should be applauded and supported.

also, politely, put a complaint in writing.

#7 pukeko walking

Posted 16 November 2012 - 08:50 PM

Hi OP, I used to work occasionally in community palliative care. It's important to find out if the doctor was palliative care specialist. Were they actually part of the same team that the palliative care nurse is in, or were they a medical specialist or gp? I would try to clarify this as sometimes medical doctors are not as up to date with palliative care guidelines as those who specifically work in that area.

If they were a palliative care specialist I would try to discuss with your Grandad's nurse what alternatives were planned to address breathlesness (such as morphine etc), and whether these alternatives need to be discussed further. Talk with the palliative care nurse. They will know which avenue to take to ensure your Grandad has the most comfortable care - and if they firmly believed he needed oxygen to be comfortable, they will know who to approach next.

best wishes

#8 Chchgirl

Posted 16 November 2012 - 08:52 PM

My dh passed away in July, and only started going downhill in june. I had palliative care nurses come around regularly, but I can't tell you about oxygen as we didn't use it at home. I can tell you the oncologist and palliative care doctors were through Liverpool hospital in Sydney and were awesome.

The palliative care team was through Braeside at Wetherill park and I pretty much had total input and choice with everything. I ended up getting a bed for him in hospital as it became too hard at home, and he only was in hospital three days before passing. I was very fortunate to have the choice of all the decisions myself.

I don't mind answering questions at all, I wish someone was there to tell me all this..

Edited by Chchgirl, 16 November 2012 - 08:52 PM.

#9 MrsLexiK

Posted 16 November 2012 - 08:59 PM

QUOTE (LindsayMK @ 16/11/2012, 09:35 PM) <{POST_SNAPBACK}>
A hospice for palliative care is a good idea.

As someone who has gone through this recently I can see where the dr was coming from. It is 100 times harder then you think it is going to be, as hard as going to palliative care to visit every day is, it is nothing compared to what living with it 24/7 is.

We couldn't get oxygen for my relative we just had to call an ambulance if he needed it, it happened a few times, sometimes he would be admitted for a few days other times he would be let out almost straight away. We had nurses come around every x amount of days to just check on things. But you need at least 2 people 24/7 there. You need to ask yourself if your grandad fell would your mum and grandma be able to help, what if only one is there could they do it by themselves?

I am sorry you guys are going through this.

#10 mum2jp

Posted 16 November 2012 - 09:00 PM

Thanks for the replies. Passing everything onto mum as she has been going to appointments with them. If possible we would like to organise what he needs without him having a stay in hospital. He and grandma are very clear he wants to spend his time at home with her. They are scared if he goes into hospital he won't come out. The palliative doctor they saw today will see him again after he reviews with the cancer team. I think they are hoping if they get his care transferred to their local hospital where they now live now they might be lucky and get a more suitable palliative doctor.

#11 mum850

Posted 16 November 2012 - 09:07 PM

It IS possible. Sometimes, it might not be possible right at the end but that's often due to carer exhaustion etc rather than stupid reasons like not being able to get oxygen that is clearly  required.
You will be able to get it, it;s just a matter of getting to the right people.
It sounds like local hospital would be a good idea, do they have a pall care team?

#12 meljbau

Posted 17 November 2012 - 10:15 AM

My MIL had lung cancer and she "qualified" for oxygen through some testing she did, but the irony was that she was too weak to push the cylinder around so she couldn't really use it unless she didn't want to move at all. She didn't qualify for the other style of oxygen with longer leads attached to a box, so we paid for that ourselves for her. From memory we just rang the company up and organised it. My mum, who doesn't have cancer, but was admitted to intensive care interstate after an asthma attack, flew home with oxygen. That was a condition of the airline, but we organised that privately too, so there are avenues for getting it.

I'm sorry you're getting the run-around. You shouldn't have to worry about things like this.

#13 Whatnow?!

Posted 17 November 2012 - 10:29 AM

There is an outstanding palliative care hospital at Wahroonga in Sydney. It's called Neringah. My mum passed away there after a week long stay. She had advanced lung cancer. It was horrific watching her go, but the nurses were truly angels on earth.

SO sorry you're going through this. I wouldn't have been able to cope at home. Pain relief was on tap for her there and that's the most important thing with palliative care...

#14 madmother

Posted 17 November 2012 - 10:59 AM

As someone who has now cared for three people I have lost, honestly... it truly depends on each situation.

My Dad was only in hospital a few days before he passed. My Mum and I, and the amazing palliative team the doctor put in place were able to manage him at home until then. But it was hard (especially on my Mum as primary carer, she actually suffered a minor stroke from it), and we were blessed in that he was an incredibly strong person who only needed major pain relief in the very last period of the cancer.

My honorary grandfather, who had suffered a stroke, gone through rehab and came home. It was only a few weeks as he then developed pneumonia and was unable to come home (went into care). I was unmarried, no kids, and fit. It nearly wiped me out - little sleep, physically intense, completely draining as much as I loved him. He had no blood family, so I was it. Luckily for me HE chose to sign papers to go into an aged care facility because HE realised (and was mentally 100% before the pneumonia) it was not a long term solution and that I would die before giving up.

My Mum.

Only you and your family can judge if you can cope. Take what you think it will be and times it by 100 and you may be close to what the reality will be.

But it has been and can be done in some situations. Thinking of you.  sad.gif

#15 Chchgirl

Posted 17 November 2012 - 09:21 PM

QUOTE (LindsayMK @ 16/11/2012, 09:35 PM) <{POST_SNAPBACK}>
A hospice for palliative care is a good idea.

I do agree, it was the hardest six weeks of my life, physically exhausting and heartbreaking as well..I was relieved when he went to hospital ..

#16 IShallWearMidnight

Posted 17 November 2012 - 11:15 PM

i cared for MIL for the last 6 months of her life.
we had silver chain come 3 times a week, to monitor meds (she had iv pain relief at the end) and reassess. She was on oxygen for most of that 6 months, due to a collapsed lung. I did all her personal care and most meds (she had mainly pain relief and blood thinners, plus antibiotics) plus her supplements, and DH cooked and cleaned, while FIL worked the occasional day (hes a doctor and runs two practices) and BIL helped with meds and provided company and respite while I had a break (had bad morning sickness for 4 of the 6 months we lived there)
Everyone shared the toddler wrangling.
It was really hard, and has certainly made me rethink changing careers to nursing/midwifery, but Im glad we had the time with her. We didnt get along for 11 years, but certainly grew close during those dawn chats, and im so glad her children and grandchildren had that time with her

#17 ozzyhelen

Posted 17 November 2012 - 11:40 PM

Hi, this is awful for your family, I am so sorry.  I am a palliative care nurse but most experience is inpatient palliative care, I am also not in NSW so what is allowed might be different.  If your grandad is up to it and you have not done this already, it might be worth suggesting he fills out an Advanced Health Directive.  He can put down his wishes in regards to his medical treatment, this includes wishes to be at home.  Although there are situations where this is not possible if it is documented in this way the health professionals have to follow his wishes...it is a legal document.  I also agree it can be incredibly hard to care for someone at home, but it is not impossible and with the right services in place your family hopefully can manage.  If things do get hard, he can go into an inpatient facility (hospice) for symptom management/respite and usually this would be for 1 - 2 weeks.  Services in the home would be reviewed and then he can go home again.  Most hospices do not have the ability to keep people long term (months and months at a time).  I do think if this doctor did not answer your questions or put your mind at ease you should organise a consultation with another doctor.  I also agree if they are not palliative specialists they do not always understand all the rules and differences in management of a palliative patient.  Good luck in getting the appropriate information and care and feel free to message me if you wish to.

#18 mum2jp

Posted 30 November 2012 - 10:38 PM

Today sadly my beautiful grandfather passed away. Having spent all afternoon at the hospital sitting with him and the family i now am home wide awake and feeling very numb. I know he was very ill but it still seems to have come as a surprise. We didn't get to see him today before he passed as he went downhill very quickly by the time my grandmother (who thankfully was with him to hold his hand) called everyone and we made our way to the hospital he had passed. He was only in hosptial for two days due to a distended bladder and got to spend most of his time at home. He just looked at peace and he is no longer in any pain, bless him he wanted to stay but his body just couldn't take anymore.

Thank you for all your advice.

Edited by mum2jp, 01 December 2012 - 10:11 PM.

#19 bakesgirls

Posted 30 November 2012 - 11:17 PM

I am so very sorry to hear about the passing of your grandfather mum2jp. Take care of yourself at this difficult time.

#20 Chchgirl

Posted 21 December 2012 - 09:51 PM

QUOTE (Blossom77 @ 17/11/2012, 11:34 AM) <{POST_SNAPBACK}>
Hi, I am sorry this is happening for your family.  We cared for my dad at home until his death and I just wanted to suggest that you get as much info as possible on hospice arrangements, just because a) things change and b) respite may be essential even if permanent care is not what your family wants to do.

We didn't use a hospice but I wouldn't sugarcoat how hard it is to care for a dying person around the clock.  It nearly broke us and still remains the hardest thing I've ever done.  In comparison, working 16 hour days or caring for a baby are pleasant, low-stress activities.  Respite care really would have helped, just so we could have a tiny break, but we didn't know about those services until afterwards.  Also sometimes the views of the dying person change and some people prefer to go into care as their condition worsens despite having negative feelings about it initially.  So I wouldn't shut that door yet.

I hope your mum and grandma cope ok, it is hard and I am sure they are doing a great job.

I agree, it was the toughest thing by far I have done in my 45 years and hope never to again..

My dh also chose when to go to palliative care.

#21 Chchgirl

Posted 21 December 2012 - 09:52 PM

My condolences also xx

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users


Join the Real Mums Test Drive Team

Five new mums will join the Essential Baby Test Drive Team and discover great new baby toys from Fisher-Price & write a review to be published on Essential Baby.

Two children fall from second storey window

Two young boys have been rushed to hospital after falling out a second-storey window of a home in Eastwood.

Victorian Labor to introduce same-sex adoption laws

Thousands of same-sex couples with children will have the right to be jointly recognised as parents by Victorian law.

Sneak peek: Maxomorra bee dress, t-shirt and romper for babies

Cutest snap find on the planet - bee rompers, tees and dresses for babies.

Toddler found two days after going missing

A two-year-old girl who disappeared on Friday night from her great-grandparents' home in rural Ohio was found alive Sunday evening in a nearby field.

Dad builds the ultimate bed for his toddler son

The transition from cot to big kid bed might be a little easier if every toddler had a bed like this one.

Is Woolworths now cheaper than Coles?

Woolworths appears to have taken the upper hand in its price battle with Coles after investing millions of dollars lowering the cost of groceries, according to new figures.

Aussie babies and parents stranded in Nepal after surrogacy ban

Parents say Australian babies are being "kept captive" and cannot come home after a ban on commercial surrogacy in Nepal.

Wannabe dads left behind in IVF debate

If virgin women can become mothers through IVF, maybe we're ready for another miracle - genuine equality for men in the parenting debate.

The health and fitness lessons I've learned

What I once assumed about health and fitness is wrong.

Our angel baby story: Hunter James

I have two children: one living, the next an angel baby.

Newlyweds send bill to no-show guests

Planning a wedding can be stressful – and, as most newlyweds can attest, it can be very costly, too.

Your choice or theirs: the tug-of-war over baby names

They had just decided on a name they both agreed on, but then the grandparents threw in an offer of $10,000 in exchange for choosing something else.

Dad-to-be's tearful reaction to pregnancy news goes viral

After 17 years of trying, this man had given up hope of having a family.

Claire Danes: acting out postnatal depression was difficult

Actress Claire Danes found it difficult pretending to have postnatal depression in Homeland, as she had just become a new mother herself.

The moment a 92-year-old meets her great grandaughter

It's a heart-warming photo this family will treasure forever.

How to prepare for breastfeeding when you're still pregnant

While every woman's breastfeeding journey is different, many hurdles are shared. Knowing what to expect will enable you to make informed decisions if - or when - you meet challenges along the way.

Sneak peek: new Love Mae bamboo dinnerware designs

We do love ourselves some brand new designs in tried and true products. The renowned bamboo dinnerware from Love Mae has just had several more members join the family, in addition to a brand new website.

Mum who killed paedophile gets reduced sentence

A mother-of-five who killed a paedophile has had her jail sentence reduced by a judge who described her case as a "truly exceptional" one.

Sneak peek: Geleeo self-cooling pram & high chair liners

We just spotted Geleeo, a brand new self-cooling pram liner you can buy in time for summer.

Toddler's silent debate with mum about naptime

He might not utter a single word - but this toddler is having a great debate with his mother about nap time.


What's hot on EB

Stella McCartney honours mum with lacy bra

Fashion designer Stella McCartney has honoured her late mum, Linda McCartney, by designing a special bra for post-mastectomy patients.

Don't panic: A granddad midwife's guide for dads-to-be

Mark Harris has helped deliver 500 babies. And he's now telling fathers what to expect.

How to be a calm parent when you're feeling anything but

Being a calm parent takes a lot of work, sometimes more than is obvious to those around us.

The joy and isolation of being a stay-at-home dad

It's cool, kind of like a second childhood. I love him to bits and think, on average, I'm an okay dad. But I also want to talk about the other stuff.

How baby Teddy's short life is helping save thousands of lives

He may have only lived for 100 minutes, but that didn't stop baby Teddy from saving the lives of others.

A heartbreaking trail of missed chances in death of baby forgotten in car

A haunting reminder to stay mindful about babies in cars, especially as we approach summer.

What to do if your baby has tongue-tie

Tongue-tie can cause feeding problems. However once it is diagnosed, the condition can be easily treated.

How to move house without losing your mind

Some people move frequently, while others like to stay put. But everyone finds it stressful.

'She had nowhere to go': how new mum's life began to unravel

The birth of her first child should have been happiest of times for Campsie mother Phuong Cao, but friends say it marked the beginning of when her life began to unravel. 

Women giving birth to a son keep some of his Y chromosomes

It was an experiment doomed to failure - they were looking for male cells in female bodies. And their search was stunningly successful.

Photos: How babies fit in the womb

A gorgeous photo series shows babies in the first hours after their birth - as they were positioned in the womb.

Baby tries to persuade stubborn bulldog to walk, fails

We don't know what he's saying, but this baby has a very clear message for his bulldog pal: let's walk - NOW.

The best toddler gift ever? Nine gender-neutral play kitchen picks

Without a doubt, one of the best gifts for a toddler turning two or three is a play kitchen.

9 easy steps to improve your baby photography

With a few simple tips you can take your images from random happy snaps to lovely clean images that create beautiful lasting memories.



Can't decide?

Check out the Essential Baby Names section for some inspiration

Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.