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Dad - not looking good

User
Posted 14 Aug 2015 at 08:21

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
User
Posted 14 Aug 2015 at 11:51

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

Stay Calm And Carry On.
User
Posted 17 Aug 2015 at 22:07

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

Stay Calm And Carry On.
User
Posted 17 Aug 2015 at 22:32
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

User
Posted 18 Aug 2015 at 06:46

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

We can't control the winds - but we can adjust our sails
User
Posted 18 Aug 2015 at 07:33

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

Stay Calm And Carry On.
User
Posted 18 Aug 2015 at 08:54
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

User
Posted 18 Aug 2015 at 20:50

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

Stay Calm And Carry On.
User
Posted 18 Aug 2015 at 22:06
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

User
Posted 19 Aug 2015 at 08:12

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
User
Posted 19 Aug 2015 at 18:30

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

User
Posted 19 Aug 2015 at 23:31

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....

 

 

 

Edited by member 19 Aug 2015 at 23:32  | Reason: Not specified

Stay Calm And Carry On.
User
Posted 20 Aug 2015 at 08:00

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
User
Posted 20 Aug 2015 at 08:44

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

 

User
Posted 20 Aug 2015 at 16:41
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 me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Aug 2015 at 19:29

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.

 

User
Posted 20 Aug 2015 at 21:59

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.
User
Posted 21 Aug 2015 at 08:17

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
User
Posted 22 Aug 2015 at 08:31

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.
User
Posted 22 Aug 2015 at 08:45

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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