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Posted 6/17/2018 8:58 AM (GMT 0)
A little update, as always I find it helps to post here when times are tough.

Very frightening afternoon yesterday, Dad was not good and particularly weak. Late afternoon he decided he wanted to move from his chair, like usual I helped him up and helped him in to the wheelchair. Within seconds I can only describe it as some sort of seizure šŸ˜“ I honestly don't know, he jolted forward, was shaking and wet himself šŸ˜“ The whole episode lasted for maybe 10 seconds, possibly less. I was so frightened. I thought it was time. We sat with him, we held a fan to his face as he was very flushed and sweaty. He came round and was ok again. It was difficult to know what to do so we called the district nurses who advised us to call the ambulance service as it would be the quickest way for him to be assessed. Paramedics came out and decided to take him in. He's currently in hospital, he had chest X Rays etc.. He's very anaemic and his bp was very low. The hardest thing now is that they want to do a CT scan. We are very torn as we don't want Dad to have any invasive kind of treatment considering his condition but at the same time... we know Dad absolutely is not giving up. Whilst I was on the phone to the clinicians waiting for the ambulance it was mentioned that we should think about having a 'do not resuscitate' note .... for ... well.. When it's necessary. I discussed it with Mum, but how do we make that decision for Dad?! It's not a subject we can discuss with him, we know that he will not want to talk about it.. But how on earth do you make that decision for someone. He wants to live.

They suspect a clot on the lung but they're not sure. They also mentioned it could be down to low bp and was a fainting episode... The way he was jolting makes me think it was some sort of seizure though. His face looked unusual, glassy eyed.. confused. I guess it could be a number of things... I'm suspecting that the cancer has spread to the lungs which is something we didn't really want Dad to be aware of. Ughhh... I was reluctant for him to go in to hospital but now he's there I'm guessing it's the best place for him as should he need anything they will know exactly what to do.

I shall post again when I know more. I'm sorry, this is a rather miserable post.. I just needed to vent X
Posted 6/17/2018 9:24 AM (GMT 0)
Kathy, Iā€™m so sorry to hear this. I think a do not resuscitate order means only if there is no hope of recovery, not to put him on machines or take other extraordinary measures, to keep him alive, at least thatā€™s what I believe it means in the US. You might want to ask, and then if thatā€™s the case, you and your mum can decide together whether you should discuss it with him.

Iā€™m guessing he is not close to that point so better to discuss now than later.

This is a terrible situation and I feel,for you. My prayers are with you, I hope he can recover from this episode and be made comfortable, so you can have more quality time with him.
Posted 6/17/2018 9:35 AM (GMT 0)
Thank you for your message Pratoman. I hope he recovers from this episode too šŸ˜˜ Prior to this he had had a really good few days.

I've just been reading a little about DNR, it seems to be that in the UK, guidelines vary according to area. Another tricky thing is that because he's at a more local hospital to the one where he was treated for PCa, they don't have access to his records. I find that quite surprising.. So I guess they're a little in the dark and going off what we have told them. I think I might take a copy of his hospital notes in today.. They might be of some use if they haven't located the necessary information already.

X
Posted 6/17/2018 10:40 AM (GMT 0)
Here in the US, a DNR order means that no invasive nor extraordinary measures will be taken (for example, if he goes into cardiac arrest, they will not roll the crash cart and shock him back). The exact meanings vary by State law in the US.

This kind of thing is why (again in the US), a health care power of attorney is required: It is a legal document, prepared before a time like now, that grants permission for the family member to make those decisions.

Kathy, this is getting into the really difficult times. Seriously, after an episode like this, the hard conversation HAS to happen. Yes, he wants to live, and you want him to live--but at what cost? It's not easy, but it's necessary. I've been there, just a year ago. And I'm glad we had those conversations long before the decisions were needed: In my mother's case, for various reasons, she lost the ability to speak so we had to make decisions based on what we knew from before.

Keep writing as you need to. We're here to listen and to virtually reach across the big water to hold your hand in ours.
Posted 6/17/2018 11:04 AM (GMT 0)
Kathy,
My wife and I are keeping you and your dad in our thoughts and prayers in the difficult time.
SP.
Posted 6/17/2018 11:45 AM (GMT 0)
Praying for your dad, you, and your family. As you've seen since your first post here, this community is there for you as much as we can be. Reach out whenever you need to. You are a special daughter to him.
Dennis
Posted 6/17/2018 12:53 PM (GMT 0)
Kathy,

I'm so sorry to hear of these developments. Being strong for your Dad will always be painful for you, that is simply part of our burden. When I see family who don't find it somehow painful, I am even more concerned for the person being cared for.

As to a DNR, here in the States (at least in the ones I deal with), it is the decision of the patient, directly through a DNR order, by way of a Medical Power of Attorney that gives the decision to a trusted person, or a document defining how you wish to be treated. I have not given that right to anyone, nor would I accept not having had the discussion with those named in my documents. I have defined at what point I want no more extraordinary care.

I am not surprised that the local hospital wants a CT scan. I don't see that as invasive, but they may actually need it to care for him if other records are not available.

As I also had blood pressure issues, I can say that falling into a heap and having difficulty briefly thereafter can be caused by a sudden movement while your BP is low. I'm afraid I've done that all too often.

My heart is with you.
Posted 6/17/2018 1:16 PM (GMT 0)
Oh my goodness Kathy. Please keep us updated about your dad and you, consider us your detached family ready to listen.
Posted 6/17/2018 1:23 PM (GMT 0)
Kathy.. Keeping you and your family in my prayers. You will never regret spending as much time as you can with him during these times. And keep talking to us a lot of us have been where you are and it's not easy but sounds like you are doing a great job of supporting and being there for you Dad!

Larry
Posted 6/17/2018 2:17 PM (GMT 0)
It is likely there will be counselor in the hospital whose job it is to discuss end of life issues with the family, to ensure that the patient's wishes are carried out when the patient is not longer able to make decisions. These are wrenching decisions, and you should get a professional involved, because they can discuss the options in a way that makes clear that no one is trying to pull the plug on him.
Posted 6/17/2018 3:04 PM (GMT 0)
Youā€™re all amazing ā¤ļø Thank you so much for your prayers and messages. It helps so much.

Spoke to the consultant, it isnā€™t a pulmonary embolism, it was caused by low bp so theyā€™ve taken him off the meds he takes for what used to be high blood pressure.

Thankfully the DNR decision was taken out of our hands and he, a a senior consultant, has made that decision for us. He explained that we can disagree and the decision can be passed on, but of course we didnā€™t argue the case. We want a peaceful and dignified passing, thatā€™s all that matters.

He explained that we are looking at a couple of months, at most, which I guess is a little better than I thought. But... whoā€™s to say what happens. Thankfully he has arranged for every day care at home for Dad and also explained that there was no reason for him not to pass peacefully if we have the right palliative care. He was surprised that a proper care package had not been put in place, really we have only been getting weekly visits. Itā€™s good to know that we will now have nurses there to help with his day to day needs.

Hard, very hard but ...keeping on keeping him as cheery as possible.

He will be allowed out of hospital once the care package is in place.
Posted 6/17/2018 5:46 PM (GMT 0)
Continue to be strong -- as much as possible. It's ok to have a good cry alone or with Dad -- it's all part of the process. We are all here for you as often as needed. It's been 29 years since my Mom passed - it was a tough final year for her and it was a blessing when her suffering ended.

Enjoy each good day as they occur. You're just being there with him I'm sure is very comforting for him.

You and your Dad and Mum remain in our collective thoughts and prayers.
Posted 6/18/2018 1:18 PM (GMT 0)

Kathy77 said...
...He will be allowed out of hospital once the care package is in place.

It will be good to have your dad in a home environment. When my wife's mom was getting worse (melanoma), we insisted she move in with us. We had a hospital-type bed set up for her and we (mainly dear wife) could take good care of her and make sure she was comfortable. We were right there for her until she passed. Gosh, it's still hard to think about that.
Posted 6/18/2018 3:35 PM (GMT 0)
Kathy,

I'm so sorry that you and your family are having to deal with this. We continue to keep you in our prayers. Your dad is blessed to have you.

Donna
Posted 6/18/2018 8:26 PM (GMT 0)
Kathy, I am SO surprised to hear that a DNR was not in place for your dad already. It really sounds like he has gotten inconsistent care--stopping curative treatment in favor of palliative care IS the start of hospice care, but hospice care is completely ineffective without a DNR. Most people under hospice care want to die in at home, not in the hospital with family having to make stressed, anguished decisions under time pressure. That's the whole point, and the blessing of end-of-life hospice. I hope your family gets onto a better track of care. You can wait for someone to guide you; but you could also get the upper hand on understanding this from the book Being Mortal, by Dr Atul Gawande. Iā€™m glad to hear, however, that this step is now completed.
Posted 6/19/2018 4:30 AM (GMT 0)
Thank you for your messages. What a whirlwind of a few days!

With regard to the comment about inconsistent care... I do have to agree. I donā€™t mean in terms of the choices made by his oncologist. He did what he could.. and Dad did well for a number of years. Iā€™m talking about the after care/palliative care. Over here, maybe itā€™s just the area that we live in, it seems to be very complicated as to what the role of the palliative care nurses and district nurses is. Dad has visits but sometimes itā€™s just been a phone call a week to see how heā€™s doing, not great but we have managed. Now... we canā€™t. We arenā€™t medical people/nurses and in terms of helping him move/wash etc we need help.

The last few days have been stressful to say the least. If i hadnā€™t called the district nurses to let them know what had happened, we would not have been fast tracked for the care package that is now being put in to place. The district nurse told me not to let him leave the hospital without one ... the hospital were ready to discharge him! Thankfully I made that phone call and we got the opportunity to speak with the consultant the other day. I think I mentioned previously that the consultant said this should have been in place months ago. Anyway.. we have done our best and now hopefully we are on the right track.

With regard to his time in hospital... quite honestly.. itā€™s not been good.
Fortunately heā€™s on a better ward now, the first ward... was... absolutely dreadful. To the point that a nurse came to us yesterday and Informed us that what had happened had been reported and is being taken further. Basically... Dad had the wrong name and drug chart on his bed, he hadnā€™t been given any of his meds for hours which resulted in him vomiting (something that we had under control) it was shocking. He has a very strict regime to follow and although I appreciate that could be slightly out of whack on a hospital ward, with lots of other patients to tend to... to not be given anything and for them to think he was a different patient entirely... was totally unacceptable. .. Iā€™m not one for complaining but I think itā€™s probably our duty to complain as I donā€™t want that happening to anybody else. The other nurses told us we should.. and although itā€™s been passed on already by members of staff who realised what had happened.. I guess we need to inform someone too. Nightmare!


Anyway... Dad will hopefully be coming out today and we can get him back in to his routine and make sure heā€™s comfortable. He was a lot better yesterday and has some colour back in his cheeks. No pain, like normal.. weak... but still making little jokes.

I shall keep you updated xx
Posted 6/19/2018 10:05 AM (GMT 0)
Kathy,

Oh my, that's terrible--to get the wrong chart? Totally unacceptable. Even if you're told it's been reported internally, please report it to the hospital administration immediately. Heads should roll.

Keep us posted about how the 'next step' protocol is working, as far as the assistance you're getting.

What's important now is that you and your Mum get the help you need. Yes, it's for him--but it's also (very important) for you. Just over a year ago, we took my mother home for the last time. Because it was late in the day, we didn't get an aide till the next day. I'll never forget the night shift aide who came the next evening. She was a middle-aged African American woman--who as we dimmed the lights (with classical music radio on), took my mother's hand in hers and said, "Miss Audrey, my name is Dolores, and I'm going to sit with you tonight" Perfect. May you find the help you need to give you the rest you need.
Posted 6/23/2018 1:22 AM (GMT 0)
Hi Kathy! I hope your family is doing ok, well as well as can be expected anyway.
It sounds to me like your dad blacked out, but it may be a seizure like you said. My grandma was having those for quite a while. She'd get that look and then she'd come back around. My aunt was caring for her at the time and she thought that my grandma was dying right then and there.
It sounds to me like the care you are getting from the hospitals and doctors is horrible! They can't even get the right chart? Idiots! They were probably giving someone else your dad's medicine. You should not have to do their jobs for them. I am in a position where I am questioning the doctor now as well.
I admire how strong you are at this difficult time. I hope I will be able to be as strong. Please keep us informed as to how your dad is doing!
Posted 6/23/2018 1:56 AM (GMT 0)
I think Kathy77 is staying in a positive place as time expands her fathers being...Not sure she needs the the ifs whys and horribles...she is dealing with her fathers transition...don't see how all the angst and gnashing of teeth...can help her or her dad at this time...she's got the picture...no shame no blame...just a different perspective...let it be...let it be...
Posted 6/23/2018 10:05 AM (GMT 0)
Hi all and thank you for your messages smile

Dad is out of hospital... Thank God. I've got to say, it was absolutely dreadful. They weren't giving him his medicines, at one point we were told 'we didn't want to wake him for his morphine'... He was given the wrong type of morphine... The list is endless. The poor man opposite him, similar things happened and he was without insulin. Sadly the hospital in question does have a poor reputation. Never again!

To top things off, after very carefully trying to co-ordinate his discharge... Dad is unable to sit for a long period of time... We were informed that we would be called so we could help him move and that an ambulance would take him home. What actually did happen... No phone call to tell us he was being discharged, no ambulance booked, no meds re-issued and he was put in a wheelchair and left in a room to wait until my Dad actually had to call us himself to tell us he was being discharged. So poor Dad then had to struggle to get in a car... Paramedics helped and said what had happened shouldn't have happened and that it was a disgrace. Dad is on what's called the gold standard register (something put in place when life is limited basically) and those patients have priority care.

I'm beyond words really.

On a positive note... He's home, (although sick as he hasn't had his meds regularly) ... This was all under control prior to the visit ... Care is in place though and the carers so far have been good, very gentle and helpful.

I felt the need to add to this as I sound very critical of nurses! Most do an absolutely wonderful job ... Some of the nurses we dealt with were good, especially the auxiliary nurses who washed him ... The problems arose when there were hand overs and critical infornation wasn't passed on. I also want to note that this isn't the hospital that Dad was under for his PCa treatment. The problem seemed to be that they really had no idea of what his history was because they had no details about him because he was treated in a different area. I don't want to come across as hypersensitive about my Dad but it wasn't acceptable. The district nurses visited last night and said they'd seen 4 families that day with the same kind of complaints. I will be making a formal complaint as I can't rest easily knowing that this is going on.

Post Edited (Kathy77) : 6/23/2018 7:10:34 AM (GMT-6)

Posted 6/23/2018 4:21 PM (GMT 0)
Kathy, now that he is home, things will be better. With the regular help at home, all of you can relax. The next steps are what they will be. Hopefully he has friends who want to visit, perhaps his (or yours) spiritual advisor as well. There will be good days and poor ones, and hopefully the aides and nurses will be there to keep him comfortable.
Posted 6/23/2018 8:53 PM (GMT 0)
Thank you Halbert smile you are right... I'm hoping that he will settle, the district nurses did say that it might take a couple of days ...

Apologies for ranting... I just had to vent somewhere.

Although Dad hasn't eaten anything really, he's as comfortable as is possible in bed. He's incredible, throughout all of this the only thing I've seen him get visibly upset over is his brother's death..Mum and I attended the funeral the other day. He doesn't seem to be dwelling on the situation he's in, he just gets on with it and is thankful for the help he's getting. He must the politest patient they've come across šŸ˜‚

I'm just happy he's home X
Posted 6/24/2018 2:46 AM (GMT 0)

Hello Kathy77,

Thankful you are there, through and through, for your dad.

I can tell that you are giving thanks for the meaningful moments ...

As you can see, you have ongoing support from everyone here.

Thankful that your dad is enjoying "HOME, SWEET HOME" at the present time, once again.

Thinking of you,
CYCLONE ~ Iowa State University
Posted 6/30/2018 2:52 AM (GMT 0)
Hi Kathy! How's your dad this week? I always wonder about him. I am so happy that he has a good attitude because not only does it make it better on him but also for everyone else around him. I am sorry to hear his brother died. How is he doing as far as that is concerned? Was he close to his brother? Your dad sounds like such a sweet man. You are lucky to have each other!
Posted 6/30/2018 8:51 AM (GMT 0)
Hi Lisa smile heā€™s picked up again since coming out of hospital. Heā€™s back in to the routine of having his medicines, sickness is back under control. The only difference now is that heā€™s in bed all the time. Heā€™s not in pain, heā€™s eating a little... no proper dinners or anything... ice creams, puddings.. whatever he wishes. The carers are very good in terms of looking after his personal needs although he is supposed to have 4 visits a day, yesterday they forgot about the afternoon call. We gave them the benefit of the doubt thinking they might be late but .. it was missed... so next time they told me to call if that happens again. I canā€™t fault the carers when they do arrive though. Wouldnā€™t be without them.

Things are as good as can be expected really, heā€™s enjoying watching the World Cup and tonight I think we are going to watch another Hitchcock classic šŸ˜‚ heā€™s still smiling and has adapted so well to his situation. Mum worries about his lack of movement but heā€™s happier just resting, waking for some food/drink/tv and then dozing off again. Iā€™ve said it before, mentally heā€™s in a better place than he was when he was first told there was nothing more they could offer him.

I know you worry about your father Lisa but try not to let the anxiety get the better of you. I know, easier said than done but when I look back I think to myself... all the worrying in the world would never have changed the outcome. By all means be proactive, keep asking questions but try and take each day as it comes. Bear in mind, my Dad was metastatic at diagnosis in March 2015 and itā€™s only since Dec 17 that he became noticeably poorly. Itā€™s a horrible thing but somehow you just keep on going... the smile on my Dadā€™s face keeps me going. Iā€™m never negative around him, ever, only once have I had a little weep in front of him. Stay strong... youā€™re nowhere near this stage from what I can gather.

Oops..nearly forgot to answer your question about his brother. Itā€™s the first time Iā€™ve seen my Dad get teary, he got upset when talking about it whilst he was in hospital. He couldnā€™t go obviously.. so we went in his place. We talked about it ... to be honest, his brother had Alzheimers and Parkinsons and in recent years had not been able to move/talk... do anything at all. I canā€™t imagine how awful that would be.. We all feel heā€™s better off now and at peace... I donā€™t mean to be disregarding of life but for that poor man... those last few years wasnā€™t life. Very sad for all.

Anyway, I shall be off now... Dad is wanting someone to trim his beard šŸ˜‚ we are a bit nervous in case we make a mess of it hehe... he really wants a full on spa day I think šŸ˜‚

Keep in touch and stay strong smile get on Skype! Itā€™s easier to communicate that way... your last few e mails I think I missed.

Xx
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