topic Re: Palliative care doctors and nurses in Coping with a loved one's cancer

Palliative care doctors and nurses

maria69 — Tue, 25 Feb 2020 01:34:42 GMT

Hi all,

my dad has advanced prostate cancer. Two months ago, he essentially went from working, driving etc... to not being able to walk properly, slurred speech and breathless. He had already been on palliative care and the meds were working well in keeping his life ‘normal’.

In any case, we then went back to hospital and his medication was readjusted so that he would be out of pain, and we eliminated the drug that was making him sound drunk, confused and had him seeing things that weren’t there.

The palliative doctor was been reluctant to give him any blood at first, but about a 6 weeks ago the doctor finally gave him some blood and it really made him feel better,

The issue is that the benefits of the blood transfusions only last 2 weeks or so, and he has had more transfusions since. All of which improve his life a little.

As the cancer is advancing, the doctor is now telling us that he doesn’t want to give anymore blood as it is a precious resource and my father isn’t really benefiting from them.... but I can see the difference, he’s stronger and can even go for a walk.

To top it all off, my father suddenly lost his hearing ... This happened overnight. The palliative doc just said nothing we can do even if he didn’t look in dad’s ear. The hearing loss is making him go crazy... this is possibly worse than seeing him in pain, he can’t hear the TV and no help was offered, not even a suggestion. We placed my mum’s hearing aid in his ears and can hear with them. After much research on the Internet, Hearing Australia will come and give him a device that will help him hear .....

I’m just wondering if anyone else has come across this ‘it’s not worth it’ attitude from palliative care.... I mean my father is still here... he eats, drinks, reads... he is still with us... why make him suffer?

sorry for the long post, I suppose I’m perplexed at the attitude the palliative care are giving us.

Re: Palliative care doctors and nurses

Budgie — Tue, 25 Feb 2020 21:08:34 GMT

Hi maria69,

I understand how you feel, but I can also understand the doc saying 'no' to more blood transfusions for your dad.
Blood IS a very limited resource, unfortunately.
May I ask how old your father is? If the cancer is still progressing, the doc may not have much hope for your father lasting too much longer, & probably feels the blood could be put aside for someone who is younger & can receive more benefit from it than your father.
I am very sorry if I am sounding blunt, & like I don't care. I do care & I understand exactly what you mean. Why should your father have his right to life taken from him & given to someone else? What makes one person's life any more valuable than another's?
I suppose it's because, as horrible as it may be, your father is probably going to succumb to the cancer, regardless of how many blood transfusions he is given. Whereas, someone else may live another 50 years from the bloods that could have been given to your dad.
Try to understand that sometimes doctors are put in situations where they have to make a choice between two peoples lives....Who will society benefit from the most by receiving the blood? That is the horrible choice some doctors have to make.

I wish your father all the best maria69.

Budgie

Re: Palliative care doctors and nurses

maria69 — Thu, 27 Feb 2020 19:54:32 GMT

Hi Budgie,

thanks so much for your reply. My dad is 75. He has been battling cancer for the past 13 years. He was cancer free for 10 and then the last two years, he’s been through chemo, with some success and then about 5 months ago, he was given 6 months to live as there were no more treatment options.

We understand about the blood, and they don’t give him too much, just enough for a basic top up, and they do make him feel so much better. It’s just scary knowing that maintaining this level of ‘health’ could be taken away, and my dad knows it. He keeps saying...I don’t think they’ll give me anymore blood.... and this his causing him anxiety.

To top it all off, he all of a sudden lost his hearing...I mean overnight! He is significantly deaf. Palliative doc and nurses just didn’t give us any ideas or ways to help...as this too has now caused him to be so sad.... I had to be provocative and act fast to get him his hearing back. Thanks to the amazing people at Hearing Australia, they promptly organised a headset and voice amplifier and quickly tested his ears for a hearing aid ( I hope he makes it to receive them). The palliative doctor and nurse had said there is nothing we can do for his hearing.... but there was. His home visit palliative nurse said that as carers, we do need to be proactive in ensuring their end of life journey is ‘calm’...yes there are drugs to confuse them....but just before we get the patient to that point, they need to know that their life still counts and not be treated like ..‘ a dead person’ ...like you no longer matter to society..... it’s just a shocking realisation for me. I will continue to be vigilant with doctor advice and advocate for him ..... my dad would have done it for us.

Re: Palliative care doctors and nurses

Budgie — Fri, 28 Feb 2020 03:30:42 GMT

It would have been very scary for him to suddenly loose his hearing. I am glad Hearing Australia have come to the rescue for him, & I hope he gets the aid soon. I do find it strange the palliative team didn't give you options. They seem to not want to help your father improve, but push him towards the end. I do understand how you feel. My palliative team are very different, very helpful.

I don't listen to doctors when they give a time line. It has SO much to do with the attitude of the patient, how much fight they have in them. I hope your father has a fighting attitude.
Keep your chin up maria69.

Regards
Budgie

Re: Palliative care doctors and nurses

Patches — Thu, 12 Mar 2020 23:34:42 GMT

On Friday last week I was offered by palliative care nurse to have my husband come home from hospital under program called ‘Palliative care at home’ and was explained this means hospital bed is provided to home for 2 weeks at no cost to me and I would receive support from palliative care nurses 3 different times during each day for 2 weeks. I accepted this offer and hospital bed arrived on Tuesday.

my husband came home via ambulance on Tuesday afternoon. I didn’t even get a phone call that day from a palliative care nurse. Mid afternoon on Wednesday a palliative care at homenurse came to home and did provide great assistance in a very calming nature as my husband was discharged from oncology ward even though he was constipated. Nurse was here for over 1 hr in the bedroom assisting to ‘get things moving’. He left here after 4pm but that was only nurse I had any contact with or from for entire day. About 1pm 2 nurses came to my home saying they are the morning shift of nurses and are happy to get my husband a shower, he was still quite exhausted from the trauma of day before he declined the offer. No other palliative care nurse contacted or visited yesterday. Arrangement was made for 2 nurses to be here approx 9am this morning to get my husband a shower. 1 nurse finally arrived this morning about 10:15am. I am now waiting to see if I have a visit or phone call during the day. We are supposed to nurses come at 3 different times each day and this has only happened once each day so far. Very disappointing

Re: Palliative care doctors and nurses

Traci-Renee — Wed, 18 Mar 2020 02:59:05 GMT

Patches, is there anyone you can call? That sounds crazy, that they aren’t helping you out more. They don’t sound very organized. Maybe it’s bc of this virus outbreak. But of course they should have told you so, instead of you wondering if they are going to show or not. I’m so sorry you are being treated this way. I would definitely call and ask what is going on.

Re: Palliative care doctors and nurses

Patches — Sat, 21 Mar 2020 10:28:43 GMT

We have been told that ‘morning shift’ nurses will come each day ...... they are arriving any where from 8:30am to 2pm and have told me it depends on needs of each person. We get phone call from afternoon shift where they verbally ask few questions. We do not receive any contact from night shift nurses as they start phoning after 10pm.

2of the nurses are wonderful. One took the time to explain the benefits and full procedure of inserting needle into my husbands arm which stays there permanently and is used if he needs to be given injection.

Re: Palliative care doctors and nurses

Traci-Renee — Thu, 26 Mar 2020 03:03:30 GMT

Patches, I’m glad you like two of the nurses. I haven’t been on in awhile. How is your husband doing? How are you doing? My thoughts and prayers are with you both. ❤️

Re: Palliative care doctors and nurses

Traci-Renee — Sun, 29 Mar 2020 16:43:36 GMT

Hi Patches, I know you have your hands and mind full right now, but please know I am thinking and praying for you and your husband. ❤️🙏🏻

Re: Palliative care doctors and nurses

Traci-Renee — Sun, 29 Mar 2020 16:49:53 GMT

Hi Everyone, Please know I am thinking of everyone who is fighting Cancer and Caregivers and Families during this crazy Coronavirus scare. Please all stay safe and Healthy. Your all in my thoughts and prayers. Like fighting cancer wasn’t enough for our dear loved ones or yourself, now this. We thought cancer changed our worlds, now look at us. Most importantly please stay safe in this crazy world we live in. Take care and please keep in touch. ❤️

Re: Palliative care doctors and nurses

Traci-Renee — Sat, 18 Apr 2020 03:41:18 GMT

Hi Patches,

we haven’t heard from you so I just wanted to see how you are doing and of course your husband. Are the nurses still coming to your house? Well again I just wanted to check in with you and send you a hug.

Traci-Rene’e

Re: Palliative care doctors and nurses

Patches — Sun, 19 Apr 2020 23:52:16 GMT

Has been crazy last few weeks with my husbands health, trying to prepare to move house and few other things. We had nurses coming each day for 2 weeks only before returning to support from ‘in community’ which is usually once a fortnight. Palliative care nurse to come to our home today to do assessment regarding exactly what help we need and can my husband stay at home ..... his body is failing and he is gradually approaching last days. We want to keep him at home. We don’t want to have him go t9 palliative care unit. Is almost exactly 5 yrs since his mum died of cancer in palliative care unit in our town.

Re: Palliative care doctors and nurses

Traci-Renee — Mon, 20 Apr 2020 00:26:52 GMT

Hi Patches,

I’m so sorry you are going thru all this. I didn’t know you were moving? I thought you were with your father in-law. I live in Mass and here they give you the option. My sister in-law passed away from lung and brain cancer when she was 55, 2014. They kept asking us about hospice.( which is were critical pts go in their final days, or who need lots of care) anyways it wasn’t until she got really bad at the end that my mother in-law and sister in-law, couldn’t bare it anymore. So they finally said yes to hospice on the 30th of August, she was admitted at 5:00 p.m and at 2:05 a.m I awoke with a weird feeling and got up to look at all the kids. I checked on them and as I was heading back to my bedroom, I looked at the clock it was 2:12 a.m. I was walking by my kitchen island and the cordless phone was right there and started ringing. Of course it is never good news at that time. So I answered and got the news that my sister in-law passed away. 9 hours later. Honestly she never woke up once there and the face her morphine right in her port...she finally looked comfortable and at ease. Instead of pain. The priest came in and like I said not even 9 hours later she passed. My heart goes out to you. Know your options and if you decide it’s getting to much, then only you will know...sending you a great big Hug, you are amazing!!! Your husband knows how lucky he got with having you by his side. Xoxo

Re: Palliative care doctors and nurses

Patches — Thu, 23 Apr 2020 12:35:17 GMT

He is in final days. Tuesday afternoon we were transferred to palliative care team were, once again, we have support 24/7. Long single hire hospital bed was due to be delivered on Wednesday afternoon and my husband was looking forward to sleeping at least one night in the bed but it wasn’t mean to be. Because his mobility was getting worse and he was so comfortable in lift recliner chair in the lounge room palliative care nurse suggested to my husband he spend the night in the recliner. We slept in lounge room beside each other that night which was a rough night. I had to phone palliative care nurses at 5:30 am as he could no longer get himself off the chair. Nurses were great and had to physically lift him from recliner to commode and then back to the recliner. He had some pain plus horrid chocking cough so was given some morphine plus maxolon via needle. By 7:30am he was trying to get out of the chair, was extremely agitated and was yelling but it was not his tone. Nurses came again, asked couple of questions and just started giving him needles. Once he was semi settled one nurse put him hand on my shoulder and told me the worst was over and it would not get that bad again. She told me that I had witnessed the body and brain massive struggle to try to fight off last days. He had 2 similar but not as verbally explosive episodes this morning where nurses attended both times, giving him morphine and medication to relax him both times. Palliative care doctor came late. This morning and has double dosage of both medication, he is now on strongest dosage of morphine recommended by manufacturers. He is receiving the meds as slow release constant dosages via a machine with hope he doesn’t wake or get agitated again

Re: Palliative care doctors and nurses

VM — Thu, 23 Apr 2020 12:54:04 GMT

Good evening Patches. It sounds really lonely where you are? How are you? Thinking of you in these quiet hours...xx

Re: Palliative care doctors and nurses

Traci-Renee — Fri, 24 Apr 2020 01:28:19 GMT

Patches,

I am sending you a great big hug, saying prayers for you all...❤️

Re: Palliative care doctors and nurses

Patches — Fri, 24 Apr 2020 01:47:06 GMT

Due to my father-in-law living on his own on one side of outer town and us on the other side ( approx 30 to 40minute drive between the houses) we made decision end of last year to move in with my father-in-laws approx Easter this year. Due to my husband almost dying in early January due to severe cellulitis and 2 other infections we made decision to start to move in January. My father-in-law in law is almost 90 and has obvious signs of Dementia. His house is in small quiet court with neighbors that have lived here for years and help each other but also keep to themselves unless needed. Due to coronavirus and caring for both my husband and his dad I have hardly left the house for 10 weeks now.

within myself I feel fairly calm and am starting to get reasonable sleep, even if that is on the couch in the lounge at the moment to be near my husband in case her rouses or gets agitated. I have small number of friends and relatives who are supporting me as much as possible. First attempt back at work, which was actually working from home, was Tuesday which lasted for the morning before my husband needed me but it showed me that I am ready to go back to work when things here quieten down.

there is only my father-in-law and myself to care full time for my husband. My sister-in-law lives about 90 minute drive away but has her own mental health issues. My husbands youngest son and family lives in different state but have hardly ever contacted us since the diagnosis . My husbands eldest son lives approx 3 hrs drive away, comes here everyday he can and would do anything for his dad and me.

Re: Palliative care doctors and nurses

Traci-Renee — Fri, 24 Apr 2020 23:51:53 GMT

Patches,

wow, you have your plate full. Your step son sounds very nice. ( the one that comes every chance he can, and would do anything for you or his dad). So are you taking care of his dad also? Boy have you earned your wings my friend. Such a big heart. I’m thinking of you and your husband daily. ❤️