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My Dad keeps getting blocked...help!!

User
Posted 16 August 2015 20:28:39(UTC)
Hi my dad has had PC for around 7 years, however over the last year he kept getting blockages urinating. He had a catheter for a long period then had a few operations to clear him.

However he is going in and out of hospital weekly because he is getting blockages. He now has a pubic catheter I believe it's called.

The support from the doctors at hospital and general care is below par. My mum has been told that it needs to be managed and is having to flush him through but this is now daily and is turning into a nightmare. She keeps having to call out a district nurse.

What advice does anyone have they can offer as my mum feels like they are just going around in circles.

Thanks
Chris
User
Posted 20 July 2016 16:45:51(UTC)
Dads very withdrawn now and muddled

He's drinking very little and eating even less. They've stopped all medicines just on pain relief.

Yesterday his bed was pushed outside and the hospice staff bought out Pimms and cake which we all had, even dad had a sip.

As I write this he is asleep and there is a little dog asleep on his bed.

I kind of just want this to end now as dad emotionally checked out.

Thanked 4 times
User
Posted 21 July 2016 09:17:30(UTC)
Thank-you.

Lastnight my 2 brothers our wives and mum all stayed in a family room with dad. It was funny as we were all trying to get comfortable on the sofas and just having a laugh. There was a punch and judy set so I performed a show with sooty and sweep!!!

I'm sure dad will hear this all going on in the background.




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User
Posted 24 July 2016 20:45:26(UTC)

Hope you don't mind me sharing, but the link below shows my lovely dad doing what he did best and that was talking a lot. This was for St Helena Hospice. My dad Geoff is sitting on the left as you watch



https://youtu.be/2vEkkNuDGJA
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User
Posted 16 August 2015 21:28:20(UTC)

Hi Chris and welcome to this forum, though sorry for the reason you join us. You don't give your dad's diagnosis or what treatment he has had and whether he is on medication now. If he believes his care could have been better he could get his GP to refer him elsewhere for a second opinion and possibly treatment elsewhere. However, if he goes along this route I would expect the second opinion would require his histology and scans which could be put on disc. If he has not had scans for some time, a new one(s) may be called for.

Barry
User
Posted 16 August 2015 21:37:49(UTC)

I read you need help asap thus suggest you call Macmillan help line

Ray

User
Posted 16 August 2015 22:01:10(UTC)

Hello Chris and welcome to the site.
I also agree re: GP and/or Macmillan.
Dad's in a perpetual spiral.
Urinary Blockage, infections.
Infections, urinary blockage and constant drain on his general health and well being.
Perhaps you could ring the nurses on this site and ask them for advice. They may have some suggestions.

If you approach the GP/Macmillan emphasis his (and your mum's) quality of life is non existent and that mum shouldn't have to deal with the current nightmare

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 17 August 2015 06:37:06(UTC)
Thankyou for all of your responses

I will tell mum and dad to do as advised and will let you know

Chris
User
Posted 31 August 2015 11:00:51(UTC)
Bit of an update

So my dad has spoken with the specialist nurse line and believe gave him some useful advice.


Speaking with him today he really is in dispair

This is the situation, he has a pubic catheter fitted this is getting blocked all the time. Mum is having to flush him through often 5-6 times a day and when she can't the district nurse comes out which probably happens every other day.

He is having to wear those incontinent pants, but he is getting a dripping tap effect of mucuss coming out of his penis which he has been told is a result of the bladder having a foreign body that being the catheter in. So he is at a complete loss because of this.


He is unable to go out for fear of blocking up,he may make the odd trip to the shops but no more than an hour and that's rare.


He has no quality if life, getting told he has to manage this is ridiculous.


He is seeing the eurologist in a week, what sort of questions should he be asking?

What are his options, I can get more of his PC details if this helps.

How do you go about sourcing a second opinion?

Are there any operations that can be done?

You can probably sense my need for answers as my dad can't go on like this.

Thanks
Chris








User
Posted 31 August 2015 13:49:08(UTC)

You're right Chris, what you describe is no quality of life at all. No wonder he is in despair.

I can't help with advice re catheters etc but I assume dad has been given antibiotics to shift any infection due to the sub pubic catheter, or are they saying that the mucus is only because of the catheter and there isn't any infection just the result of the irritation caused by it

If he hasn't got an infection yet he's likely to because of the ongoing mucus isn't he?

Second opinion? Approach your GP perhaps.

I hope (I'm sure in fact) that somebody with more experience in this area will be along to advise you, so hang in there.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 31 August 2015 14:12:13(UTC)
Thanks Sandra

He is on a continued course of antibiotics, due to continued infections

The mucuss apparently is a result of the reaction to the catheter
User
Posted 31 August 2015 17:19:23(UTC)

Chris

I am not that experienced with super pubic catheters but I had one fitted 12 days ago, I have not had any blockages in that time and no requirement to flush, my antibiotics finished 5 days ago. I do get a very small amount of green mucus coming out of the penis into the pad I wear and the urine does smell quite strong. I assume you dad has a lot more happening in his bladder than I have.  

As suggested get back to the your GP or possibly ring your urology nurses if you have their details.

Thanks Chris

User
Posted 31 August 2015 18:58:38(UTC)

Thanks Chris for your response

User
Posted 06 September 2015 13:54:03(UTC)
Hi Chris,
How is your dad getting on? This sounds so similar to my dads experience a year ago until he had an operation to sort it. He was blocking almost daily, we had the nurses out almost every day to sort it out. Nothing worse than a sick man who desp needs to pee and can't due to blockage. The discharge from his bladder was awful too. With hindsight, the urine infections and constant antibiotics were really poisoning his whole system. I hope things have improved. Ask to be referred back to urology consultant at hospital if it's still going on. The operation dad had ( forget what it was called) made him a whole lot better, although he suffered from an overactive bladder for a short while after the op (which was sorted with tabs )

Joan
User
Posted 09 September 2015 15:32:21(UTC)

Hi Joan

 

Thankyou for asking

 

So Dad had a meeting yesterday with his Urologist consultant.  During his meeting he blocked up and was in agony, in a way it was good that it happened so it was obvious that there is a problem!

He was dealt with by the consultant, however he has said that they need to have a look in the bladder to see what is going on.  

Dad is going to get this done privately as he can not wait weeks and weeks for this.  He was due to see his GP for a referral today but had to cancel because he got blocked up....you couldn't make it up!

One of the main issues is where they live and the poor care that they are receiving from the hospital, its just adds on more worry.

Hopefully this will help

All the best

Chris

 

 

 

User
Posted 08 February 2016 23:16:55(UTC)
It's been a while since I posted but bit of an update.

Dads in so much discomfort, he has a super pubic catheter in and all the blockages have stopped.however he has constant bleeding from the front which he has to deal with.

Dad just gets very tired and will often sleep for long periods then come to life but he has low energy levels.

PSA is 18 and he is 10 on the gleeson scale

He has diverticulitis and a fistula so he is sitting on one bum cheek and is so uncomfortable. He really is quite weak and very down. Tomorrow he is having a colonoscopy and the plan is to reroute the bowel to a bag which should dry out the fistula. Hope I'm getting this right!!!

He had a visit from the hospice who gave some really practical help to my mum also he is hopefully going to attend twice weekly sessions to get his muscle strength back.

He gets very tearful at the moment which is not like dad I think part of it is hormones I'm not used to seeing my dad like this.

For me it's horrible seeing a once active man asking me to water his garden and do the things he loves doing. Unfortunately he is not strong enough and able.

He just shuffles around bent over all to do with this illness.

I just hope he's able to get stronger and more comfortable if he can have these ops.

The good news is today when I spoke to him on the phone he was being argumentative so I guess there's life in the old dog yet!!!
User
Posted 09 February 2016 00:07:42(UTC)

Hi Stokesy,
I am sorry to read that dad is still having a tough time - I hope that he is more comfortable soon. As you say, the hormones play havoc with people's emotions.

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


User
Posted 09 February 2016 07:27:45(UTC)

Hello Stokesy, I too hope that dad can get some relief.

Re: the sitting on his bum cheek, would a "donut" ring help. It's a circular cushion with a hole in it to relieve the pressure on the anus.

My daughter has a bag, albeit a permanent one, following years of problems with her bowel and it has given her her life back.
She was on Essex Radio yesterday and the number of people who rang in to say that having a stoma fitted was one of the best things they had done in terms of being "normal" again

I assume in dad;s case it would be a temporary one while the fistula heals?

As Lyn says the hormones will not be helping his emotional state but then neither will how he feels be helping.

To him, he's "lost" everything he hold dear, including his independence and self respect. Hopefully if the bag helps and he starts healing he will start to feel more like his old self

We can't control the winds - but we can adjust our sails
User
Posted 09 February 2016 19:22:14(UTC)
Thank-you for your responses

Dads had the colonoscopy today so next will be a meeting to discuss having the bag fitted in a few weeks

He is going to be provided with a special cushion from the hospice to make him more comfortable as well... Lucky old him ☺
User
Posted 09 February 2016 23:10:19(UTC)
Your poor parents. You have my sympathy especially as my hubby has recently had a supra pubic catheter and also a urethral catheter inserted (yes two) and we have started down the daily blockage journey. I'm currently waiting for the district nurse and it's ten past eleven at night. If she can't sort it out then it's a trip to hospital which is the last thing we need.

Hubby had a transurethral resection last week (hence the second catheter) which involves trimming some prostate away, we are hoping this will ultimately lead to a no catheter life, but we shall see. Has dad been offered a TURP?

Kind thoughts
Devonmaid
User
Posted 10 February 2016 09:19:46(UTC)
Hi

Yes my dad has had a turp he's gone down the menu list of what's on offer and they have done most things.

I'm rubbish with all the technical stuff, spoke to him this morning he said the colonoscopy wasn't the greatest experience he's ever had.

It seems now that finally they are getting the support they need, blue badge etc

The experience so far is that they have to push the hospital all the time they are not the best which layers on stress for mum who is always chasing appointments.

User
Posted 13 March 2016 22:53:34(UTC)

Since I last posted dad has now had a stoma fitted. It's early days so there have been a few accidents as my mum gets used to helping dad.

On a plus side I'm walking with Jeff Stelling on his challenge walking from Hartlepool to Wembley.

I'm walking from Luton Town Fc to Watford fc which is 26.2 miles to raise money for PC

User
Posted 06 July 2016 20:28:42(UTC)

Its been a while since I posted on here but I wanted to update you.

 

For ages dad has been muddling along although in a lot of pain, he was on a regular dose of Morphine and was then given steriods.  This had an immediate impact and he got his appetite back and he became a little more active so all very positive.

The Hospice has been brilliant and the support that my mum and dad have recieved through the drop in centre and counselling has really helped them

However he keeps on getting infections through his Catheters and there is quite an odour.

Last week the Hospice wanted to take a look at the infection and they were really concerned and since he went in he has really gone down hill.

I visited him today and was shocked at how he is.  He was drifting in and out all day and I just sat and held his hand.  The doctors have put him on a course of anti-biotics but have seen no improvement in the last 24 hours and have said that the next 48-72 hours are critical to hopefully get a reaction.

Doctors have said that they will be having end of life discussions with us if there is no change.  Dads already filled out a form with hymns and readings which I guess you would as its your party and you want to know whats going to be played but as much as I try and make light of this I know that my dad is slipping away.

I'm keeping my fingers crossed that dad pulls his finger out so I can at least have a chat with him about anything even the weather!

 

Thanks for reading

 

 

 

User
Posted 06 July 2016 20:49:23(UTC)

Sadly, it is more often an infection that brings the final days rather than the actual cancer. For some, it is simply the organs that close down one after another, almost as if the person is leaving us bit by bit. I hope that dad rallies, even for a short while, so that you can gather just a few more memories but even if he doesn't, keep talking. Tell him the things that are in your heart, talk about happy times in the past, describe your day and what's in the news. End of life specialists say that hearing is the last sense we lose so he will hear your voice and feel reassured by it even if he doesn't join in the conversation. We played mum's favourite CDs on loop - long after she had stopped actually talking, she was still mouthing along with the songs and it still makes me smile to remember those moments.

You are on my mind

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


User
Posted 06 July 2016 21:04:13(UTC)
S

Thanks for keeping in touch, sorry to hear it is not better news. Good to know your are there for Dad, thinking of you.

Thanks Chris
User
Posted 06 July 2016 22:16:04(UTC)
Hi stokesy
I'm sorry to read of your dad's struggles. Hope he responds to the antibiotics. Thinking of you.
Take care.
Lesley x

User
Posted 07 July 2016 16:32:38(UTC)

Thinking of you. Priority is for Dad to be as comfortable as possible. Glad you are able to be there for him. Regards,

 

Fiona.

User
Posted 07 July 2016 19:13:29(UTC)
I feel for you, it's a difficult time in all your lives. As Zarissa says, it's most important that your dad is made as comfortable as possible. We talked happy talk to both of our parents in their last days, it made them smile to know how much we'd enjoyed the life they gave us.

Thinking of you
Love Devonmaid xxxx
User
Posted 07 July 2016 21:55:25(UTC)
Thank you for your kind responses.

I went to see Dad today and what a difference 24 hour's has made.

He was so much better today although still uncomfortable he was talking and eating his food.

I'm so happy to have had a chat with dad

I had written a letter to him I didn't want to read it as I found it too difficult. Mum read it to dad while I was in the hospice garden. Dad really got upset when I went to to see him but he was so happy to hear what I said in the letter. He said he'd pin it to heaven's wall if he could.

I think he's all been having us on as he actually phoned on his mobile to speak to Mum which was more surprising tonight.

I'm back to see him Saturday afternoon so I'm hoping that he can stabilise how he is.

He said to me that his life is being cut short

Having to make the most of the days and weeks with Dad .... hopefully month's
Thanked 3 times
User
Posted 11 July 2016 20:51:36(UTC)
Well I went to see Dad Saturday and Sunday and he is more with it, they are looking at tweaking his pain relief.

Looks like the infections under control and he is eating well so that's positive. It's really difficult predicting what's next but Mum said he was much better today.

Sometimes I feel like he's having us onπŸ˜ƒπŸ˜ƒπŸ˜ƒ!

Thanked 2 times
User
Posted 11 July 2016 21:44:28(UTC)

That's brilliant news. I feared last week that you were simply seeing the little rally that so many patients have just before the end. Very happy for you that dad is actually improving - enjoy x

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


User
Posted 11 July 2016 21:53:58(UTC)
People are amazing, on Friday I had the call to say that my sister had three infections, including pneumonia, a UTI and cellulitis and was out of options, she weighs less than six stone. Sunday, she's bright as a button and they are talking of sending her home.

So pleased to hear that your dad has done the seemingly impossible and turned things around, it's fantastic news.

Lots of love
Devonmaid
User
Posted 19 July 2016 04:58:28(UTC)
It now seems that Dad is starting to drift away. I was at the hospice Sunday and yesterday and he is very sleepy and disorientated. He's on a lot of pain relief so he isn't in any discomfort. I just sit holding my dads hand but it feels like we are approaching the end.

I laugh and joke about this situation and make a light of it all the time dad is still with us but it's difficult to imagine what its going to be like not to have my dad to speak to about trivial things.

I'm in the hospice today with my mum and brothers and just hope dad is a bit more with it.

I look at my dad lying asleep in his bed and it's just so sad.

I contacted one of his old work colleagues who he he spent a lot of time with and he visited him yesterday and he was so upset seeing dad when he left. It shows what a man dad is I suppose that he has made such a mark on peoples lives.

I hope that dad is going to be sitting up reading the paper or his gardening magazine when I arrive but I know that won't be the case.

Sad times



User
Posted 19 July 2016 06:35:47(UTC)
S

Your post brings back memories of my Mum's passing, thinking of you and your family.

Thanks Chris
User
Posted 19 July 2016 08:21:52(UTC)
It's very sad but people near the end do sometimes rally for a few days, which is such a blessing. I'm so sorry to hear that dad is so weak. You are doing brilliantly and keeping your dad amused with jokes and laughter, even if he cannot share it, is the right thing to do.

I'm so pleased he seems to be reasonably comfortable and that the hospice was there for him. I often wonder what I'll do when my hubby gets to that stage, I've left the thought open for him to be at home if he wishes but that may be dictated by the circumstances.

Thinking of you.

With love
Devonmaid xxxx
User
Posted 19 July 2016 08:28:56(UTC)

Stokesy this is such a difficult time for everyone.

The end is getting closer but he is at lest comfortable and pain free.

All you can do is carry on as you are. Be as cheerful as you can in his company, hold his hand and tell him you love him and thank him for having been such an amazing dad. He'll hear you even if he doesn't respond.

Thinking of you and wishing you strength

All the best

Sandra

*******

We can't control the winds - but we can adjust our sails
User
Posted 19 July 2016 10:21:12(UTC)
Thanks very much everyone

I went in with my brothers this morning and he has perked up more than yesterday and we were talking and making each other laugh and get the giggles.

Dads quite muddled which makes him mis hear us and so he says funny things which although is sad me and brothers pick him up on it and ask what he's going on about which we found funny

We asked if he remembered who visited him yesterday.... He told Anthea did!

He doesn't know an Anthea so we all found that amusing

Its a lovely sunny day and the garden at the hospice here in Colchester is amazing

We'll keep on smiling with him
Thanked 3 times
User
Posted 20 July 2016 16:45:51(UTC)
Dads very withdrawn now and muddled

He's drinking very little and eating even less. They've stopped all medicines just on pain relief.

Yesterday his bed was pushed outside and the hospice staff bought out Pimms and cake which we all had, even dad had a sip.

As I write this he is asleep and there is a little dog asleep on his bed.

I kind of just want this to end now as dad emotionally checked out.

Thanked 4 times
User
Posted 21 July 2016 07:10:35(UTC)

Hello Stokesy,

I was sad to read your post but was expecting it.

I can understand that you feel now that dad has had enough. I remember sitting by my mothers bed at home when she was in a coma and telling her it was alright to go now.

IT's love that produces those thoughts - not selfishness, so never doubt yourself in how you feel.

Thinking of you and your family

********

We can't control the winds - but we can adjust our sails
User
Posted 21 July 2016 09:17:30(UTC)
Thank-you.

Lastnight my 2 brothers our wives and mum all stayed in a family room with dad. It was funny as we were all trying to get comfortable on the sofas and just having a laugh. There was a punch and judy set so I performed a show with sooty and sweep!!!

I'm sure dad will hear this all going on in the background.




Thanked 4 times
User
Posted 21 July 2016 09:55:50(UTC)
very much thinking of you xxxx
User
Posted 21 July 2016 13:41:40(UTC)
Thinking of you

Leila xxx
User
Posted 23 July 2016 04:24:17(UTC)
My wonderful dad passed away at 3:40am.

He was surrounded by all of the us.

I love you dad xxx

Chris
User
Posted 23 July 2016 05:45:04(UTC)
Chris,

I am so sorry to read that your Dad passed away this morning. My sincere condolences to you and your family. I'm glad that you were all there for him at the end. Stay strong for the times ahead and look after yourselves.

Best wishes,

John
User
Posted 23 July 2016 06:39:45(UTC)

Chris my condolences to you all. Thanks so much for sharing the story and just how much love your dad was surrounded by at the end. It's been warming whilst obviously heart breaking.
Thinking of you




If life gives you lemons , then make lemonade
User
Posted 23 July 2016 06:45:44(UTC)
C

So sorry to hear that Dad has passed away,please accept my condolences. Don't bottle up those emotions,let them out. Nice that you were all there for Dad and remember to look after each other.

Thanks Chris
User
Posted 23 July 2016 07:04:47(UTC)
Chris,

Condolences to you and your family at this sad time.

Keep strong and Keep Right On...

KRO..
User
Posted 23 July 2016 08:11:06(UTC)

Sorry for your loss Chris, but no more pain and suffering now.

Thinking of you and your family at this sad time. XX

********

We can't control the winds - but we can adjust our sails
User
Posted 23 July 2016 11:02:28(UTC)
I am so sorry to hear about the loss of your dad. Please accept my sincerest condolences.

Remember the love you had for each other will never die - that will last for ever,
User
Posted 23 July 2016 16:39:16(UTC)

My sincere condolences to you and your family. You did all that you could and your dad was surrounded by his family at the end. Take care of yourselves in the weeks and months to come.

Rosy x

User
Posted 23 July 2016 17:05:00(UTC)
You are so kind.

I stepped out of the room at the very end as I didn't want to see my dad take his last breaths. the last 2 days were traumatic to describe as I watched dad.

I didn't cry after my dad died as I see my role as making everyone laugh.

I got back to mums after driving home and I was almost physically sick.


We've been at home and popped down to this lovely village pub for some wine and more back home.

So many of my friends and brothers friends have said what an amazing man he was.

Its so up and down at the moment

I need to cry a lot but I've been putting a brave face on to make everyone laugh

Deep breaths everyone
User
Posted 23 July 2016 17:33:57(UTC)

Well Stokesy, brave faces have their place in the scheme of things and you have your family to think of BUT you are also important so don't forget that.

Dad must have been a lovely man to have so many people saying what an amazing person he was. That is his legacy to you and how his memory lives on in others.

You will eventually grieve and it will eventually pass, however, your memories of him will never leave you. You are the person you are because that's what he made you.

Thinking of you.

Sandra


*******

We can't control the winds - but we can adjust our sails
User
Posted 23 July 2016 17:44:36(UTC)

So sorry to hear of your loss, your dad sounds like he was a good man and very well loved, you have done him so proud please take care in the weeks to come
Viv x

The only time you should look back is to see how far you have come
 
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