My Dad deteriorating,so sad.

User

Posted 02 May 2016 at 10:24

Since dad has got diagnosed end of January,he has never got any quality of life,he is now back out of hospital after 10 days,his psa had doubled to 600 odd in 3 month. He is gradually getting worse each day,he now can't get out he bed by hiself& is sleeping so much didn't even get out his bed yesterday till 5pm,is eating very little& everything is such an effort for him to do,& pain in his bones.We are awaiting a bed for the hospice,but not sure how long it will take. Though we would like him to spend his last days at home.

It's just all so heartbreaking.We haven't been told how long he has,but feel we will be saying goodbye before we know it.

Life is just so cruel😢

User

Posted 02 May 2016 at 23:19

Sorry to hear Dad is getting worse, I am sure one of our experienced members will be along soon to offer some advice.

Thanks Chris

User

Posted 03 May 2016 at 01:15

Right, this is going to seem just like a load of questions so I will apologise first, Precious.

- Is dad still having the hormones? Is it a monthly injection or a a three month dose? Can you find out what it is called?

- has he seen the oncologist recently? If not, who has been coordinating his care? Why was he in hospital for 10 days?

- has dad been allocated a macmillan nurse or been referred to the pain clinic at the hospice? Hospices are not just for beds - they usually are far better than the hospital or gP at getting pain under control. The downside of pain control is that the patient may just get more and more drowsy so it needs a special touch to get the balance right

- the hospice or macmillan nurse should also be able to arrange an assessment so that social services and health get organised with whatever dad needs to be able to stay at home. You say you would like him to die in his own home but has anyone asked dad what he would prefer? Not an easy conversation but important to be clear about whether the hospice bed would be simply to get him stabilised and back home or whether he would be in there until the end.

- it might be that he just needs a change of hormone, or an extra one added - this is unusually quick for treatment to fail but as you have realised, a doubling PSA on new treatment is not a good thing at all. Important that you find times to laugh and chat with him, to create some happy memories and to reassure him that he is safe and loved. Tell him the memories that make you happy ... it may all seem overwhelming and sad but there will be a time in the future when you will remember the smiles of this time rather than the pain and tears.

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

User

Posted 03 May 2016 at 12:53

Hi Lyn,

Thanks for replying, It is the oncologist that said about a month ago,as he was too ill to get chemo tablet and for dad to go into hospice,for pain management ,but he has terrible stomach pain,so was sent to hospital,to get ct scan first,and also he was so dehydrated as been so sick & had impacted bowel. The ct scan came back clear. He was on drip for 5 days,and was so exhausted,he couldn't even last the hour at visiting time & was sleeping while we were in.

He has been getting the 3 monthly hormone treatment,I will find out what.

Latest oncologist on Friday was to see about getting a hormone tablet but again too ill for that ( it costs something like £2000 a month) and he threw up twice while there,

We had to get doctor on call out yesterday, who wanted him to go in hospital,as dehydrated again. Bone pain at his back/spine now&Gave him an enema,& he can get a top up of morphine liquid up to 5 times in day 5ml spoonful,he already gets 15 in Mst tablet twice a day.

We are now awaiting the hospice nurse coming out for an assessment today& district nurse to get a special bed. He does want to be at home,but is ok about going into hospice as long as gets back out as we all do.

We just don't know how quickly he will get a bed there,my mum has been quite strong but broke down yesterday. It took her,my sister& myself to help him out of his bed. He still has his sense of humour though and was asking the doctor if he had a bet on the snooker!! God love him x

User

Posted 03 May 2016 at 23:26

I do hope you had some success with the hospice nurse today. My husband was in a lot of pain and feeling generally awful towards the end and taking frequent Oromorph. Our hospice nurse visited and re-jigged his medication including upping the MST to 20mg twice a day. Within 24 hrs he was feeling much better and no longer needing the Oromorph. He died 2 weeks later but during that time he had no further pain and although he gradually slept more, he was able to chat and watch TV with us.

Between them the hospice nurse and district nurse should be able to get a bed and any other necessary equipment to you pretty quickly, so hopefully he will be able to stay at home as he wants.

I am thinking of you

Rosy x

User

Posted 05 May 2016 at 09:35

Thank you Rosy, for replying and so sorry for the loss of your husband.

The hospice nurse was out& is trying to get him into hospice for a week,but unfortunately there are no beds available. He is now in hospital and on a drip,and they are waiting to give him a blood transfusion,but his temperature was too high to get this yesterday.

It was not a good visit,with hallucinating and sick while we there. The nurse did say it might be the morphine that is causing him to see things as he does remember it& told us he is having terrible dreams.

It's terrible seeing him so poorly.

Thanks for thinking of me

Eleanor x

User

Posted 05 May 2016 at 22:21

I don't have anything helpful and practical to add Eleanor, I just wanted to say that I've read your post and feel very sorry for your poor dad. It's really horrible ha ugh to stand and watch this go on, all we can do is to try to be our normal, happy self, talk about lovely things you enjoyed together and let him rest as and when he needs it. Hopefully the pain meds will get sorted and he will feel a little more like his normal self. Hugs.

Love

Devonmaid

User

Posted 30 Jul 2016 at 19:48

We buried my dad on Wednesday,he got six months from diagnosis,& a hellish 6 months at that, got out the house 3 times in all that time apart from hospital visits.

Managed to keep him at home with family,,carers & district nurses,it's not been easy but Relief now that he doesn't need to go through one more day of it.

Funeral was perfect just the kind of day he would have wanted,church packed& an amazing £2230 raised for prostate Cancer. Lets hope it's nearer to helping someone else.

At peace now,Gone but not forgotten

Xxxxx💕

User

Posted 30 Jul 2016 at 20:26

So sorry
That's so sudden for you all. Six months is no time for you all. Sending wishes to you
Chris

User

Posted 30 Jul 2016 at 20:43

Oh Eleanor,

So sad to read your post it is very easy to say thank goodness that dad is no longer suffering and not in pain but it is true. I hope you and your family can now start the long process of healing .

My thoughts are with you.

There was once a very loved member on here called Top Gun and his favourite saying was Life is For Living , please take that thought forward in your grieving .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jul 2016 at 20:50

So sorry to hear of your loss,please accept my sincere condolences. Look after each other. It is probably of little comfort that he is no longer in pain.

Thanks Chris

User

Posted 30 Jul 2016 at 21:23

I'm so sorry to hear your sad news. My thoughts are with you and your family.

Much love x

User

Posted 30 Jul 2016 at 21:25

Really sorry for your news. Please look after yourselves and accept my condolences.

John

User

Posted 30 Jul 2016 at 21:50

I wish to add my condolences to those of others for loss of a loved one.

Barry

User

Posted 31 Jul 2016 at 00:01

So sorry about you families loss, my sincere condolences. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 31 Jul 2016 at 00:18

My most sincere condolences, sometimes it's the best thing, even though it's hard. That's got me through the loss of my dad and my mum. Knowing life was so awful for them.

Hugs

Lots of love

Devonmaid xxxxx

User

Posted 31 Jul 2016 at 10:51

So sorry. Much respect.

User

Posted 31 Jul 2016 at 13:25

My sincere condolences - take care

Debbie x

User

Posted 31 Jul 2016 at 14:54

Such sad news Eleanor, please accept my condolences for your loss. I hope there are some nice memories as well as grotty ones as well from the time he was being treated.

He is at peace now, stay strong.

Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 31 Jul 2016 at 16:39

Eleanor,
I have messaged you.
It is such sad news and so sudden too, please accept my very sincere condolences to you and your family.
As Chris says, he is at peace now.

Memories live on.

God Bless
Chris.

User

Posted 31 Jul 2016 at 17:30

Thank you all for your condolences they means a lot,& yes the one thing that will get us through this is tthat at least he doesn't have to go through one more day of suffering,

I would not wish him back to go through that again,

I wish every one of you whether you have lost a loved one or a loved one is going through this all the strength in the world to get you through your journey.

Much love

Eleanor X

User

Posted 01 Aug 2016 at 11:43

So sorry, Eleanor, to hear of your loss. I agree with you, I would not have my partner back to have him suffer but it's darn hard for those they leave behind. You are in my thoughts.

Fiona. xx

User

Posted 01 Aug 2016 at 21:26

Eleanor

I am so sorry for your loss. my condolences to you and all your family.

xxx

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