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Dad - not looking good

User
Posted 04 August 2015 19:09:42(UTC)

My dad (now 86) was diagnosed with PCa and bone spread 2 years ago after having prostate problems and operations since his 60's. Today, we have had confirmation of rapidly expanding bone mets in his pelvis, although I don't think the news from the GP was put quite as bluntly as it was to me.

He doesn't take all the painkillers he should as he hates taking tablets, but has now also been prescribed ibuprofen  to help manage the inflamation.

I have contacted MacMillan nurses and hope to hear back from them tomorrow.  He is very stoic and was cooking for my mum, who has short term memory problems, earlier this evening.

I've got no idea how long he has - all I can do is try and make things as easy for him and my mum as I can.  My brother is bipolar and is already in pieces, so I'm now trying to calm down after a long day of seeing the doctor, collecting prescriptions and applying for Blue Badges.  (As well as trying to deal with someone else's cock up at the Golf Club!!)

 

As I say under my name....

 

Paul

Stay Calm And Carry On.
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Posted 02 September 2015 08:41:09(UTC)
Paul
I don't see it that you are taking a chance at all, you are getting a little bit of "you" time in and seeing out a season long commitment to your club. You have been there for your Dad and have told him all the things he needs to hear. If anything did happen then you rushing to try and get to him would not change anything. There is one thing I can say having seen many patients in end of life care. There is no set pattern but in almost every case the medical staff at the hospice have known. They observe signs that they are trained to see.

Mick was very lucid right up to the last 8 hours or so. On the Saturday we had three of our American cruising friends come up from Southampton having just completed the cruise we should have all taken together. They even brought him some KFC (disgusting I know but he loved it) He was excited that they were coming and asked me to dress him in a special T shirt, one which one of our visitors had bought him for Xmas. He sat and chatted with us all for hours and ate a good amount of his chicken too. He wanted to know all about the cruise and asked after some of the staff we knew on the ship. He wanted a photo taken with the Ladies which was a little unlike him,but I think he knew it would make them happy. I love that photo he has one lady either side hugging him and guess what he is smiling, a genuinely happpy smile not just a pose.
Then on the Sunday about 2pm he decided he wanted to talk with our friend Joy out in Georgia USA, so I called her, He chatted away with her for 30 mins or so. Then our next door neighbours popped in for a cuppa and to see Mick, he chatted with them until about 6pm. Then he ate a small meal every little bit of it. He went to sleep about 8pm and simply did not properly wake up again. He stirred a little about 6am and I called Karen because I thought she might want to say something, she talked to him and although he said nothing his facial expression showed that he knew it was her. I stayed with him holding his hand and talking to him until I realised his breathing had almost stopped. I called the hospice and Si at about 8 am. The hospice team arrived at 8.30 and pronounced Mick, then Si arrived about 5 mins later.

It was just as if he had known and wanted to say goodbye to some of the special people in his life and to some who he had not had the chance to see for a while. I drew a lot of comfort from that.

I hope that sharing this will help you when the time comes.

My very best wishes as always
xxx
Mo
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Posted 04 September 2015 22:45:31(UTC)

This will perhaps be a detail that some members would prefer not to know, in which case they should stop reading.

Paul, the human body is an amazing thing. It was explained to me (when I was in a situation similar to the one you currently find yourself in) that when someone is approaching the final stages, the brain stops sending signals to eat and drink. As a result, the person begins to dehydrate and this prompts the brain to produce a sort of natural painkiller. The body still behaves as if in pain, but the person doesn't know they are in pain because that part of the brain disconnects from the rest. So, as terrible as it is to witness, your dad's mind will not know that his body is feeling pain.

I hope that gives you some comfort - it certainly helped me when I needed it most x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 19 August 2015 08:12:25(UTC)

I agree with you Allison. i only have the one daughter and I'm sure she would be there for me, whereas my son perhaps wouldn't notice or want to involve his wife, so you are doing really well Paul to be so caring.

However, for you and I Allison we are assuming we could take in and understand the need for spring cleaning or housework.
Perhaps if we were confused we wouldn't understand strangers in our house and be frightened and resentful.

If that ends up so in my case then I hope my daughter takes me to stay with her for a few days and lets the cleaners, painters, whatever, sort it out for me to save me any stress.

Congrats on the win and the wine Paul

We can't control the winds - but we can adjust our sails
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Posted 04 August 2015 21:41:46(UTC)
Paul
Life really does deal us a bad hand sometimes.
I know you will do everything you can for your folks but don't forget to look after you as well.

Thinking of you
Xx
Mo
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Posted 04 August 2015 23:53:17(UTC)

Mo

He's had a great innings, and we know the time will eventually come when we have to say our final goodbye. It is still a shock when you realise that time is fast approaching, and that the brunt of the responsibilities in dealing with it will fall on myself. It was because of the problems my grandad and dad had with their prostates that led me to the 2 visits to the doctors, 2 years apart, that led to my diagnosis, and apart from the incontinence and ED, which are far better than they were, I'm as well as I can be.

I am just hoping that his pain can be managed, and no matter when the end comes, it will be with dignity. We have a local hospice with a great reputation - what I don't know is how soon we will need it. Days, weeks, months? It's the not knowing what the future holds that is worse. We have mini breaks booked, golf days, etc. I think I will try and keep some semblance of normality for my own sanity.

There is a guy only 2 years younger than my dad who came 2nd at our Captain's weekend (2 day comp), with a score equal to the winner, (aged 20) only failing to win on a technicality. His performance gives hope to us all, and shows that life can still have much to offer if we can keep our health. It's what I'm aiming for, so I definitely will be looking after myself as well.

Paul

Stay Calm And Carry On.
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Posted 05 August 2015 00:36:52(UTC)

Hi Paul,

Really sorry to hear about your dad, I wish him well.  It's a difficult time for you all.

You're having to cope with an awful lot just now.  Make sure you take care of yourself too. 

Hope your dad gets all the help he needs.  It's not easy to be with someone you love when they going through this. 

I watched my father-in-law slowly fade away with motor neurone disease, at least most of us here, have a chance.  I count myself lucky that I survived my heart attack, my dad wasn't so lucky.  We lost him when I was only 18.  I nearly lost my mum recently, I would have been really sad, but at least I've been really fortunate to have her here for so long.

Enjoy as much time as you can with him.

Take care.

Steve

 

 

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Posted 05 August 2015 02:11:12(UTC)

Sf2, I hope he goes on for years and continues to be able to do the things that are important to him. Stan bought a new tent and went camping for a month in France at the age of 83 - he died a month later but he knew how to live the moment.
Is he steady on his feet? My biggest worry would be him falling and breaking his hip or pelvis :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 05 August 2015 06:52:16(UTC)

Thinking of you sixfoottwo

We can't control the winds - but we can adjust our sails
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Posted 05 August 2015 08:20:31(UTC)

Hi Paul
I was so sorry to read this this morning . Maybe some of the elder members knew your dad had PCa but I wasn't aware . It is making me very aware how this disease runs in families so i'll watch my son . I so hope things don't progress too rapidly yet for everyone as it can be a shock left juggling so many balls so quickly ( dad , mum , brother ) . My wishes are with you and thankyou for your kind words
Chris




If life gives you lemons , then make lemonade
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Posted 05 August 2015 08:52:28(UTC)

Lyn

You're bang on about falling. I keep telling him to use a stick, but he won't, and it's just stubbornness! He is very stoic in his attitude - he is just beginning to admit he needs more help.

Hope you enjoyed your hols, Lyn, but it's good to see you back on here.

Paul

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Posted 05 August 2015 08:59:02(UTC)
Paul
I had just typed a post for you and when i hit the post button something went blip and it just disappeared. It was just a bit about hospice services so when I get back from the gym I will PM you with some info that might be of use.
xx
Mo
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Posted 06 August 2015 21:34:08(UTC)

The MacMillan nurse is visiting my dad on Monday. Things are moving.

Paul

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Posted 06 August 2015 21:36:16(UTC)
Paul
that is good, dont forget to ask her to impress on your Dad that using the stick is really important.
xx
Mo
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Posted 10 August 2015 09:01:36(UTC)

We had to get the emergency doctor out on Saturday night. He could hardly move due to severe pain. The doctor prescribed an anti sickness drug, his stomach was severely extended due to gas from not emptying his bowel, (not that we knew the reason before)so a laxative was prescribed. He also prescribed a top up 30 mg painkiller. It all meant my parents missed the family meal for their wedding anniversary. Anyway, he was up and seemed a million times better last night.

My question is about the GP. The full strength co codamol made him sick, he has an enlarged stomach, so could all this have been foreseen, and prevented?

Anyway, were off to meet the MacMillan nurse this morning and put other things in place to help my parents. I just can't help thinking all this could have been avoided.

We went to the hospital on Saturday night to collect the drugs and the doctor told us that the cancer was in his spine, (hadn't been told that.) When the GP was round last Tuesday, surely she could have given us more information re the diagnosis. I'm not a happy bunny.

Paul

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Posted 10 August 2015 10:06:56(UTC)
Paul
I really hope the Macmillan nurse has shed more light on your Dad's current situation. I am sad to say that GPs have so much they have to know and look out for, their knowledge of specialist situations is all really down to experience rather than training. Often things are not recognised or just take a time of trial and error for them to get right. After all they are general physicians or practitioners and not specialists.
A lot would also depend on how much your Dad has taken on board or understood when he has had reviews with his medical team. If the cancer has spread into his spine then this can have an impact on all sorts of things. One of those is bowel management. Mick used to have a lot of trouble with bouts of constipation which filled him with gas and caused his tummy to extend badly. They could also be very painful. This was all happening even before his first SCC. Of course using painkillers of any description can compound this. When Mick was using painkillers all the time our GP suggested he use Macrogal every morning (a sachet that you maix into a drink with water) If Mick had not had a poo in 2 days we would increase that to 2 a day and also start him on Dulcolax every 6 hours which normally did the trick within about 24 hours. If not we would increase the frequency to every 4 hours. Dulcolax is a very mild treatment and does not cause a swing the other way. The intense pain could be from his mets but it could also have been down to the constipation too.

If there are spinal mets and they are causing any suppression of the nerves that send the messages to the bowel or bladder then this is one area to monitor very carefully. It can be an early sign of an SCC and it can also be a sign that a bowel blockage through impaction is forming.

I am so sorry your parents missed their anniversary meal I know how much you were all looking forward to it.

Best wishes
xx
Mo
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Posted 10 August 2015 13:54:18(UTC)
Thanks Mo

He is considerably better now and we have written down what he needs to take and when.
Mum's memory problems are getting worse and she tidies away things and then nobody can find anything.

He had the Macrogal prescribed on Saturday and that has released a lot of the gas although he is still yet to perform.

The hardest thing is my dad won't admit to things. There is a record of a fall a few months ago which he won't tell us about and he even tried to tell the MacMillan nurse he was fine!

The MacMillan nurse said she'd do the application for the upper level of attendance allowance. A cleaner has been arranged to start next week, a golfing friend looks after the garden. I think we will need caters going in before too long to help with dressing, meals etc as my mum gets mixed up doing any task involving planning.

Not easy times.

Paul

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Posted 11 August 2015 22:27:50(UTC)

Further updates - I found out my dad was originally diagnosed in 1999, but he has only been on HT for 2 years. If he is fit enough, I will try and find out why he never opted for removal or RT. He is seeing the urologist on 10/9 when surely he should now be seeing an oncologist. Why does everything seem to move so bloody slowly?

His last PSA result in March showed a further decline, so the recent spread has come as a bit of a shock, just at the wrong time in his 6 monthly cycle of appointments.

Paul

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Posted 12 August 2015 23:51:26(UTC)

More from today. My mum, who was a nurse and was used to dealing with death, rang after lunch to tell me dad was fast asleep and she thought the end was near. She is not used to him deep sleeping in the day, but the effect of all the painkillers is leading to the tiredness.

Of course, when I got there, it's about a 15 minute drive, he had just woken up. Anyway, I sorted the multitude of tablets out, went to the chemist for some paracetamol as they were running short, and called at the doctors to order some more codeine as they were running short of this too.

I also called the MacMillan nurses again and a district nurse visit is being arranged. Mum was trying to help lift dad from his lying position on the sofa, as he struggles on his own. I just don't know where we're going with this - dad's pain and difficulty in moving, mum's memory problems and inability to plan and remember anything short term. I want to see them at home together for as long as possible, but it's going to become increasingly difficult.

Paul

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Posted 13 August 2015 03:15:37(UTC)
Paul
It sounds as though you are having a really difficult time right now, it is hard enough dealing with your own day to day issues without having both parents needing extra assistance.
I can also understand you wanting them to be together at home for as long as possible.
Maybe you can ask the Macmillan nurse what home care assistance can be arranged. Maybe their GP can help given that part of the problem is your Mum who may not be able to cope with herself let alone the additional needs of your Dad.
It is almost as if there needs to be a joint assessment. I would hope that the various medical parties involved could work together to get something better in place.

I have no experience in dealing with social services so I really hope someone who has can give you some support or advice here.

all the very best
xx
Mo
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Posted 13 August 2015 09:55:56(UTC)

Paul, I don't think they will refer him to an oncologist just to manage end-of-life issues, that is the point when some oncos pass their patients back to urology!

Do you have a pill sorter from the doctor/pharmacist? They are pre-filled with the tablets needed each day and make it easier to track who has what when. We had one for m-I-l whose dementia meant she was overdosing fairly regularly.

Just an afterthought - are you sure it is recent spread or could your dad have just not told you everything?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 14 August 2015 07:07:36(UTC)

Another bad day - a quick summary - constipated, system blocked, sick with bile and not even keeping water down, doctor came pm, prescribed anti sickness tablets and got more codeine, health visitor came, dad badly sick, health visitor rang doctor, got anti sickness injection at 6 from doctor, home by 6.30, health visitors come at 9.15 to adminidter injection, wait 40 minutes, dad has water and a small piece of bread and butter, codeine tablet and 2 paracetamol, and is delirious by this time not having a clue what is going on.

Health visitor and MacMillan nurse coming this morning. Suppository to be administered. Hoping that clears system, he can rehydrate, and start improving.

Paul

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Posted 14 August 2015 07:28:44(UTC)

Hi Paul
So sorry to hear things moving so quickly for you . Stay strong mate
Thinking of you
Chris and El




If life gives you lemons , then make lemonade
User
Posted 14 August 2015 08:21:10(UTC)

Ah Paul, so sorry things are not getting any better. Doesn't codeine constipate?

We can't control the winds - but we can adjust our sails
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Posted 14 August 2015 11:51:12(UTC)

This is what's causing g the issues. He's now had a suppository and am hoping this will help sort him out. He's brighter this morning but still a bit confused.

Paul

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Posted 17 August 2015 22:07:57(UTC)

It's been quite a distressing few days. I got home at 3 am last night after dad was admitted to hospital. The heaving, constipation and eventual freeing up of this, the pain and now total confusion were all too much to bare. No places at the hospice and my brother and mum just feeling they couldn't cope.

In hospital today he had a fall, no damage which was surprising as apparently the affected part of his spine looks like a honeycomb. Conversation is difficult often giving yes or no answers, he stares into space, and makes strange comments that are disjointed. He had a brain scan before we left him this evening. I am not an overly emotional person, but it is all very distressing.

Paul

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Posted 17 August 2015 22:32:05(UTC)
Paul
My heart goes out to you, it's very upsetting seeing someone you love like that. I have no words of advice other than try to be there as much as you can, distressing though it is. I have found this helped me each time I lost a parent. Knowing I had done my best was a blessing.

I'm hoping that the hospital can treat dad and improve the situation but it isn't always possible and in which case, making him comfortable would be a great relief.

Kindest thoughts go with you
Allison
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Posted 18 August 2015 06:46:20(UTC)

Allison says it for me Paul.
Having been where you are now with my brother in law last year I can understand how you feel.

I hope he hospital can sort him out.

The yes no answers and staring into space is his way of coping with his fears and his pain. Perhaps he's frightened that is he starts talking it will all come pouring out and distress you all more.

He was so so lucky not to have further damaged his spine. Was nobody keeping their eye on him?

He and your mum need you right now. You can only do your best and having done that you will have nothing to reproach yourself for.

I am thinking of you all.

I don't pray much so can't claim to have a direct line to a higher being but if He's there He gets it in the neck quite regularly from me !!

Course, that might explain why he doesn't listen. I might have to rethink that one.

All the best
Sandra

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Posted 18 August 2015 07:33:04(UTC)

I am not religious either, I feel people who claim to be helped often have a more positive attitude. I still think the hospital are thinking of sending him home, but there is no way I am going to have mum looking after him.

My brother was reading a paper from America that suggested 10% of PCa sufferers developed dementia, although whehter there is a direct link, I'm not sure. As he was yesterday, it would be impossible to have a conversation - most answers to questions were just yes or no.

Anyway, I've got a game of golf this morning at an away course, a long standing invite, will go to see him tonight, and will have mum all day tomorrow. I'll update when I can.

Paul

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Posted 18 August 2015 08:54:14(UTC)
Paul
my heart goes out to you. hospital really is not always the best place at a time like this.Sadly the wards all seem to be under so much pressure with resources stretched to capacity. The hospice may have a palliative care consultant who works with the hospital to help prioritise care for those that need it the most. It may be worth contacting the Macmillan nurse and laying things on the line to her. Clearly your Mum is not going to be able to manage just now and the responsibility should not fall directly to you either. The Pastoral care team (social worker, occupational health etc) should work closely with you to ensure that your Dad has a proper care package if he can be safely looked after at home. Whilst there may not be a bed for him at the hospice right now that changes daily for many reasons.

If your Dad is getting recurrent constipation it could be down to a number of factors, all of these could require medical intervention at some point to prevent a more serious problem. Regrettably in late stage PCa it is one of the more common issues, so much so that many hospitals and hospices implement a bowel management policy. I have to confess when Mick was in EOL care I hated the policy and fought it tooth and nail but in hindsight and with the benefit of more experience it is actually much kinder to the patient.

Allison and Sandra have both made some great comments, this is a really distressing and emotional time for any person and when you have your own medical issues it makes it even harder. I like you am not religious, I respect that many people are and that is where they draw strength and comfort.

However I do believe in somethings and they are human kindness, destiny and fate. These are all things we have that we can influence and even control, to me they are therefore far more credible.

I am pleased to hear you are getting a bit of "you" time even half a day hitting a ball around will be somewhat therapeutic I am sure.

One thing many of us who have experience of a similar situation to yours would probably say is, do not give up, nag the authorities, pester those that can help and most of all do not give up on human kindness.


Thinking of you

best wishes
xx
Mo
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Posted 18 August 2015 20:50:40(UTC)

Dad has now been moved to a ward where he will get care on an almost 1;1 basis. Unfortunately, he has been suffering bad nose bleeds today - he does suffer them from time to time - but these are worse than before.

He is to be seen tomorrow by the oncologist and urologist. He was still showing signs of confusion and the reason for this is still unknown. Goodness knows how things will develop. Just one day at a time I guess.

Mum will be with us tomorrow. My brother has had 2 days with her and has found it a bit stressful, especially as food in the fridge has needed throwing away, and needs a good clean. Mum thinks she can cope with the tablets she has, (they are in blister packs but she has 2 others as well), but my brother said there were tablets everywhere. The whole house which has been their pride and joy, also needs a thorough spring clean. I want to organise a professional cleaning company as it will take 2 days for 2 people imho. Getting the right support for mum is the next task.

At least the golf went well. Came 1st and won a couple of bottles of quality wine and hit the ball really well.

Paul

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Posted 18 August 2015 22:06:11(UTC)
Paul
You are a wonderful son. I have experience of my MIL's house going to rack and ruin due to her health issues, it broke my heart to see her, always immaculate, becoming scruffy and unkempt. The house also. I wish I had done something, but she wasn't my mum so I felt helpless. It was easier with my own mum as I felt able to take charge. I dread that happening to me and have told my girls in no uncertain terms that they are to make sure I'm clean and tidy and my house is too, cleaners welcome, should I ever lose the ability to care for myself.

Glad you had such a successful day, I bet the wine was tempting....hope you treated yourself.

Lots of love
Allison
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Posted 19 August 2015 08:12:25(UTC)

I agree with you Allison. i only have the one daughter and I'm sure she would be there for me, whereas my son perhaps wouldn't notice or want to involve his wife, so you are doing really well Paul to be so caring.

However, for you and I Allison we are assuming we could take in and understand the need for spring cleaning or housework.
Perhaps if we were confused we wouldn't understand strangers in our house and be frightened and resentful.

If that ends up so in my case then I hope my daughter takes me to stay with her for a few days and lets the cleaners, painters, whatever, sort it out for me to save me any stress.

Congrats on the win and the wine Paul

We can't control the winds - but we can adjust our sails
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Posted 19 August 2015 18:30:54(UTC)

Sf2, having been sort of where you are more times than anyone should have to bear, all I can say is leave nothing to regret later. Say what is in your heart, tell him the things you want him to know, talk about love and the old days. For some (not all) the confusion leads gently into a peaceable and quiet phase where sleep comes more often and then takes over. Your voices will soothe him more than any medical intervention could. For others, the confusion is linked to calcium in the blood or down to the combination of different meds and once these things are sorted out, there can be a rapid improvement back to clarity.

I am thinking of you all

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 19 August 2015 23:31:28(UTC)

Another day when you could write a book. We met a lovely young doctor - I bet the female staff swoon over him as he is nearly as good looking as myself!

Basically:

changing pain medication as morphine is believed to be causing confusion

nose bleed wouldn't stop because of lack of platelets due to cancer in spine affecting bone marrow - he was on a blood drip to replace lost blood and had a stopper up his nose

we were told that if his heart stopped that they wouldn't resuscitate which we agreed to, my dad had fallen asleep then, so he was woken up and asked. He suddenly became very lucid and agreed saying he didn't want a lack of quality in his life, but it was up to us. It was though a switch had been pressed to return him briefly to normality. The response was so well said and thought out, it was as if he had been practising it

he cannot be given radiotherapy as he is too ill at the moment and would cause more harm than good

I asked about how long he had and was told about 3 months. Things can change quickly though so I will cancel my golf trip to Tennerife at the end of September. never done a golf break abroad before but dad and the family come first.

We then had a bit of a do with my mum's tablets. She thought she could cope but had the wrong tablets in her warferin box! We are going to contact the GP re solutions. She is very realistic about my dad, but short term memory is virtually non existent.

I think I am pretty down to earth so all I can do is....

 

 

 

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Posted 20 August 2015 08:00:56(UTC)

Sounds like dad already had it planned out in his mind. Perhaps he's been anxious to say it but needed the prompt.
Glad it's sorted out for you all.
They'll be other opportunities for golf trips and you already know in your heart and mind that you needed to cancel.

I hope you get your mum's meds sorted out. Even if she is currently realistic about your dad it must be grim for her to feel confused a lot of the time.

Thinking of you all and wishing you

All the best

We can't control the winds - but we can adjust our sails
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Posted 20 August 2015 08:44:40(UTC)

Paul, You're doing brilliantly, I'm so sorry you and your family are having such a tough time and it really is tough when parents are involved.

I had a similar time with my Mum a few years ago and fully understand how it must be for you. All I could do at the time is put trust in the medics and just be there for her. I just tried to keep on her case and make sure that everything that could be done, was being done, and you seem to be doing just that.

Being down to earth, really does help so.......................

Wishing you all the very best,

Cobbles

 

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Posted 20 August 2015 16:41:59(UTC)
Hi Paul, so sorry to read where your dad is now, I hope he is as comfortable as possible and that you get the help you need to ensure he is supported well so you can "enjoy" what time you can with him.
As someone who may be where your dad is in the not too distant future it is good to read and therefore understand what it is like for you so that I can ensure my kids are supported when it's my time, keep posting, God bless.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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Posted 20 August 2015 19:29:17(UTC)

Hi Paul,

At least you know more or less where things stand now with your Dad. So glad you have your golf as an outlet at such a difficult time. I remember a few years back before my Mum died how hard it was visiting her as the bungalow was so dismal and chaotic but she was very independant and it wouldnt have worked for me to take over but very sad to see. You are doing everything you can, the time you have with Dad is perhaps the most precious. Thinking of you,

 

Regards, Fiona.

 

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Posted 20 August 2015 21:59:08(UTC)

Another day, and more changes. Dad was far less confused today with the change of medication. However, he seems to have lost bowel control as he has had to be cleaned up twice when both my brother and I arrived at separate times. I asked the nurse whether there was any chance of control returning, and although we are unaware of any spinal cord compression, we were told probably not. The pain was more intense though, it seems you cannot get on top of everything.

His nose bleeds have stopped but he did pull out the stopper, but there was a tube there when we arrived. Although he was much more with it and alert, he only ate a small amount of soup, and has little appetite. He does seem to be drinking well, though. He had gone for a walk with a zimmer frame which pleased him. It is hard to believe he was still caring for mum 3 weeks ago.

The hospital are also planning his release. Going home to mum is not an option, so we are left with nursing homes - and would mum want to join him there temporarily. We have made an appointment for mum at the GP on Monday to review the problems of her taking tablets, and also to ask for an urgent Social Services review of her situation living on her own.

I also spent much of the day dealing with my parent's financial admin, cancelling their holiday flights, (£700 up the swanny, as no cashback from Easyjet, and there'd be no chance with the travel insurance)) and other matters, as well as dealing with well meaning calls from relatives. A friend also called to tell us how successful his lung op had been in removing over a quarter of his lung capacity. No wonder I'm knackered!

Off to mum's tomorrow for more admin and to take her in the afternoon. It's also our wedding anniversary, which reminds me I'd better go and write the card, (always on the last minute), so hopefully we'll be able to go for a meal tomorrow night.

Just got to...

Stay Calm And Carry On.
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Posted 21 August 2015 08:17:57(UTC)

Firstly, Happy Anniversary to both of you. Would have been better under different circumstances but that's life eh?

Good for you taking on the responsibility of making sure your mum gets the help she needs. Good luck with that. That sounds like irony doesn't it. Wasn't meant to be but unless you are really really lucky with you GP then you'll have a fight on your hands.

Have as lovely a day as you can manage

We can't control the winds - but we can adjust our sails
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Posted 22 August 2015 08:31:10(UTC)

Not much change yesterday, the biggest concern now is they are planning dad's discharge.

He wants to come home. When we visit, he hardly moves due to his pain, he is number 2 incontinence, suffers nose bleeds which are difficult to stop. It would bring around mu mum's demise as quickly as my dad's regardless of the care package thrown in. We have somehow got to persuade dad that a nursing home would be a better option, if we can find one to take him.

Mum had a call from the local hospice support at home leader, but we could not get round to finding what was discussed as she couldn't remember. That will have to wait now till Monday.

We also have an appointment on Monday morning to discuss mum with the GP. There is confusion with taking her tablets, and we are going to ask for an urgent social services review. I don't know whether the GP will be able to support us in dad's situation.

Still having to......

Stay Calm And Carry On.
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Posted 22 August 2015 08:45:47(UTC)

When you see Social Services, the magic words 'carers assessment' might help. I would mess with their heads by formally requesting an assessment of dad as mum's carer AND an assessment of mum as dad's carer. Ideally, the assessments will both conclude that the carer's needs cannot be met - it isn't the same everywhere but in my area this is by far the fastest route to a care package.

I am saying all this but probably Bri has already given you advice and he knows far better than me.

Don't get so embroiled in the sorting that you forget to keep on being the loving son. And don't forget to treat yourself kindly. Keep strong x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 22 August 2015 12:34:51(UTC)

Hi Paul,

The other thing is that your Dad should be classified as a vulnerable adult and if care is not set up sufficiently at home, it is not safe to discharge him back there ? I had this with Neil, the hospice and other staff would simply not allow him to go home from hospital  until he had appropriate care in place and adaptations to the house which, awful though it was, took some pressure off me. It felt like walking on a continual knife edge ! Thinking of you, anyway. Good advice from Lyn, it is your right to ask for a carers assessment.

Thinking of you,

 

Fiona.

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Posted 23 August 2015 00:10:05(UTC)

Crunch time is fast approaching.

Hospital want to discharge dad, who is increasingly compos mentis, but with the problems referred to in previous posts.

Mum cannot look after herself at home, without significant support.

Dad wants to go home.

Mum doesn't want to go into a nursing home with him, and knows she can't support him at home.

Dad would hate a nursing home as he'd be worried about mum. The possibility of a nursing home has not yet been discussed with him.

Do we separate them after 64 years, when dad has only a few months left, when dad being at home would have a severe affect on mum's health?

There is no easy solution here, nor a best one.

I would like to see dad in the local hospice asap, but I don't know how long we'd have to wait.

Oh for the wisdom of Solomon.

Proving very difficult to ............

Stay Calm And Carry On.
User
Posted 23 August 2015 07:36:43(UTC)

What a dilemma Paul.
I know you have their best interests at heart but knowing that your dad has a limited time left and they been together 64 years, well if it was me I'd do my damndest and pester and pester and pester for help to keep them together.
I realise you probably are doing that anyway.
I hope one of the others with knowledge of hospices and social services will be along and offer advice.
Stay strong, but you take care of you too.
Sandra

We can't control the winds - but we can adjust our sails
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Posted 23 August 2015 09:07:16(UTC)

Hi this isn't particularly my area of specialism. However, as Lyn says if there is a degree of Co - dependency here ie they are caring for each other then they should be entitled to carers assessments. Recent legislation has a strong focus on the role of the carer.
You mentioned that they have said his prognosis is three months. If this is the case he should have a Continuing Care health assessment. A care package may be able to be put into place to care for him at home as a result of this. Has your mum had a formal diagnosis if so she may also have a right to a social care assessment of her needs.
There should be a discharge meeting to make sure the discharge is safe. I would think a social worker and Physio and/or OT from the discharge team will be involved you could ask who these people are and ask them what plans are in place. The OT may have to do a home assessment to see if any aids and adaptations are required. All this should happen prior to discharge.

So to summarise
There should be a discharge plan
If your dad still has the capacity to decide where he wants to go that has to be considered
If they have given a three month prognosis he should have a Continuing Health care assessment
Other professionals should be involved in his discharge ie physio and or OT
Social care assessments should be carried out
A care package should be put into place including any aids etc prior to discharge

Speak to the discharge team

Hope all goes as well as can be expected

Bri

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Posted 23 August 2015 09:13:56(UTC)
Paul
I really feel for you, this is such a difficut situation to handle,I am hoping someone with social services knowledge will see your post and give you some pointers. I know there is a specially funded package for emergency care it covers a 12 week period and whilst that may not be long enough, it will at least buy you timme to get things sorted out.

At the moment I rather suspect the hospital are playing you a little bit and hoping that you will accept responsibiiity for your parents care. If they are then that is not acceptable your parents have a right to proper care and to a full care assessment, they both do individually and as a couple too. Unfortunately getting that is sometimes one hell of a battle.

As far as your local hospice is concerned a lot will depend on their relationship with the hospital and the charitable organisations there (Macmillan, Marie Curie, Maggies etc) also they will have their own policies on self referral etc. I can tell you what happens at our hospice but each one is independent and has their own procedures so that probably wouldn't help too much.

I would definitely try calling their clinical director or maybe their social worker/pastoral care manager though. You need to be quite explicit though, the hospice does not cater for what is often referred to as respite care. There needs to be a medical reason for your Dad needing to go there. It can be pain management, to improve appetite and general well being, for bowel management, to improve mobility, for psycholgical help or for end of life care (that would not be considered the case just now from what you have told us)

If he did manage to get a bed at the hospice they would work with you all to try and get the best care for him elsewhere as quicky as possible. Regrettably that could still be in a nursing or care home if returning to his own home is not safe or practical.

In my limited experience of situations like yours there is a duty of care that the hospital should follow as part of his discharge from them. Again I hope someone who knows a lot more abut this than me will post.
When Mick was sent to the hospice from the hospital I went to a meeting with all the relevant parties incuding Occupational therapy, social services and the medical staff. Same again when he was allowed to come home from the hospice.

Thinking of you Paul and hoing you get some answers and a clearer way forward.

all the very best
xx
Mo
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Posted 23 August 2015 09:15:29(UTC)
Paul
pleased to see in the time it took me to post that Bri has posted for you, I was hoping he would.
xx
Mo
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Posted 23 August 2015 21:44:49(UTC)

Thanks for all the help and advice. It is much appreciated. After today, my dad won't be going anywhere anytime soon.

We had a call before 10 this morning saying he had had a major nosebleed, but it had been treated and he was stable. 10 minutes later, we were being asked to go in, so I picked mum up and got to the hospital by 10.40.

He was open to all in the ward wearing just his protective pants, and blood down his side as he had pulled out his canula. Very distressing, but at least they cleaned him up straight away and got a gown on him.

After being so perky the evening before, he was back in a world of total confusion. The doctor told us he was now nil by mouth due to concern about blood in his lungs, was being given anti-biotics to counter the possibility of pneumonia, more blood to build his platelets, and a new stopper was in place up his nose.

Only when these had been given was he given a drip to build up his hydration. To be fair, his high blood pressure and heart rate were much improved when we left him.

It was the confusion, asking for various drinks, (manlly alcoholic!), seeing trains and ships and not really knowing where he was, his desperation to go home, and the sentiments that we were letting him down that was the most distressing. We stayed for 6 hours, and I was praying he would fall asleep, but in the end, I said to mum that we weren't helping him nor us he, so we left him in the hope he would settle.

We rang tonight to see how he was. He had pulled the stopper from his nose, but this was refitted so he can't remove it now. Blood pressure and was OK but his pulse was up. I am glad my mum has a short term memory, as what we saw today would break her heart if she could remember everything.

And it is for her I must....

Stay Calm And Carry On.
User
Posted 23 August 2015 23:10:23(UTC)

Paul, forgive a blunt question but have you given much thought to the end game? Will it be too distressing for your mum to be there or would it be harder for her to believe he has gone if it happens while she is somewhere else? Has your dad ever expressed any views about what and where he would have preferred? Do you think you could cope with him at home if Mum was somewhere else?

You are on my mind x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 24 August 2015 07:00:01(UTC)

Lyn

Mum was a nurse and has experienced death first hand many times. She's not impressed with the current nursing methods - but it's over 30 years since she last worked on a ward, she finished her last 10 years on out patients.

She honestly thinks the sooner he passes on, the better. She is very realistic about the current situation and knows she can't cope with him at home. In my dad's mind at times yesterday, he felt when he was slightly more lucid he could still look after her if he came home!

We are off to see the GP with mum this morning, and I have written all the points that need addressing - her tablets, care, my dad, with notes of all the symptoms of her memory problems. Social services reviews, district nurse help - we are doing all we can. I cannot begin to think where we are going with dad after yesterday.

We will however be talking to the local hospice at home care leader today as well - it will be interesting to hear what she has to say.

Dad has set up a funeral plan and written down his wishes for the funeral. We have found most of the financial paperwork and are helping mum as much as we can.

Another day to......

Stay Calm And Carry On.
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Posted 24 August 2015 07:35:40(UTC)

Good luck today Paul.
I'm sorry you had to see your dad like that yesterday.

You're doing the best you can for your mum (and your dad too) and nobody can ask more of you.

It's good (in a way) that your mum has her prior skills and remembers enough of them to be aware of today's trend in nursing care and that she is capable of understanding what is best for your dad.

Like everyone else on here I feel for you all, especially as you have your own problems to contend with.

My very best wishes to you
Sandra

We can't control the winds - but we can adjust our sails
 
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