Dad - not looking good - - Page 3End-of-life issues - Prostate Cancer UK Online Community

User

Posted 22 Aug 2015 at 13:34

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.

User

Posted 23 Aug 2015 at 01:10

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 Aug 2015 at 08:36

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

User

Posted 23 Aug 2015 at 10:07

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

Edited by member 23 Aug 2015 at 14:23 | Reason: Not specified

User

Posted 23 Aug 2015 at 10:13

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

User

Posted 23 Aug 2015 at 10:15

Paul

pleased to see in the time it took me to post that Bri has posted for you, I was hoping he would.

User

Posted 23 Aug 2015 at 22:44

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 24 Aug 2015 at 00:10

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

User

Posted 24 Aug 2015 at 08:00

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.

User

Posted 24 Aug 2015 at 08:35

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

User

Posted 24 Aug 2015 at 09:09

Paul

you are doing an amazing job looking after your Dad and your Mum, if neither of them are able to ever tell you that then let all of us assure you that you are. They will both be deeply appreciative.

You must also look after yourself Paul, I know you cancelled your golfing trip for all the right reasons but when the time is right you must make sure you re- book. in the meantime make sure every day that you set aside a little time for you and your wife. I am sure she is very worried for your own health and well being right now.

I hope your day with the various authorities and medical people brings you a much more cohesive plan of action for your parents care, thereby giving you some much needed breathing space.

thinking of you Paul

all the very best

User

Posted 25 Aug 2015 at 07:54

Dad was a bit more settled yesterday, although breathing was weak and he is still taking the oxygen mask off. When I was out of the ward, he did ask mum to take her clothes off and get in bed with him!!!!!

Most of what he says is difficult to understand. I was supposed to be playing in a competition at another course today, but I pulled out - I was told my partner's wife did have a stand by. I would have had to have left the house by now as tee off was 8.50.

I was glad I did as I found out afterwards my dad's sister and my daughter are both coming - my aunt to stay with my mum for a few days, and my daughter from MK just for the day. I have to pick up my aunt, who is not in the best of health herself, from the station with my brother, then come home straight away by taxi once she arrives.

I just hope dad has had a good night's sleep as it will be good for him to see some different faces.

Another long day to.......

Stay Calm And Carry On.

User

Posted 29 Aug 2015 at 02:39

I've not updated for a while. Basically, I feel worn out. Dad is hanging on and I think it is mainly because he still thinks he can get home and help mum.

We have agreed with the doctors not to replace his canula when it has to be taken out which will probably be later this afternoon. (Saturday). His arms are swollen now as well as his legs, so the only reason they will canulate again is if he has another nosebleed as they would try not to let him bleed to death.

Earlier this evening he had half a bowl of soup, some ice cream and coffee, which considering he was nbm on Sunday and Monday is a miracle. Although we have been told he only has days left, if he keeps battling away for mum and can take food and doesn't suffer another nose bleed, this could go on for a while yet.

He can really only breathe through his mouth due to the nose being blocked up to prevent the bleeding, and it is difficult to pick up what he says due to his weakness. He did flirt with the nurses earlier, mum and I missed that, but his sister was most amused!! He has also been entertained by by brother's girls over the last two days, which has helped my brother, who has done really well considering his mental health.

My younger daughter is coming up from the Smoke tomorrow, and dad will love hearing stories about her recent trip to NY, (she returned on Wednesday), and the elder daughter may also come up again.

Along with all the admin I'm trying to do for my mum, I am fast running out of steam. I have woken up after sleeping earlier, which explains the stupid time of this post. I haven't cried since I was a little lad, but I think that is about to change. Mum has been doing well but the strain is telling on her, and I fear for her health once dad goes. Seeing dad continually for the last 3/4 weeks is truly upsetting. He is too ill to be moved to a hospice or home. I am so full of admiration of him but it's becoming increasingly difficult to find the inner strength to........

Stay Calm And Carry On.

User

Posted 29 Aug 2015 at 08:04

Sad to read of this Paul,

So much going on for you and your family to have to deal with all at once. Nothing I can do or say to make it better or easier but I hope you get some respite soon.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 29 Aug 2015 at 09:13

Paul

you have had so much to deal with so far this year I am not surprised you are tired and beginning to feel as though you are running out of steam.

Looking after one parent with needs is one thing, looking after two simultaneously is a really big challenge, physically and emotionally. Then add in your own issues as well and it is very easy to understand why you are finding it all a bit much.

It does sound as though your Dad is losing his battle but he is doing so with as much dignity as possible and with a family around him that love him dearly. He may not be able to say it but he will appreciate it more than you will ever know. Of course he will want you to be there to look out for his wife of so many years, your Mum. This lady who spent her life nursing and caring for others may just surprise you with her own fortitude. Yes she will need care and some assistance but the wheels should now be in motion to ensure that does not all come down to you.

I know that nothing I or anyone else might say will make you slow down and take some time to look after yourself, not right now. However when you feel the time is right you will stop and gather your own strength. One of the first things you will probably do is release all of the emotions that have been building up over the last year. You will cry, probably a lot and at the least little thing. There is nothing at all wrong with that. Those tears will be shed for all the sadness, hurt, anxieties and frustrations. Your wife and your family will be there to support you through that too.

Know that we are thinking of you Paul, the door to this house is always open.One of us will be here to give you the virtual hugs and any comfort that we can.

All the very best

User

Posted 29 Aug 2015 at 09:27

Thinking of you all Paul, but especially you.

Cry your tears, there's nothing wrong with that, it merely shows you have a great capacity for love.

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

User

Posted 29 Aug 2015 at 13:20

Hi Paul,

I'm so sorry for the situation you find yourself in. Sometimes life doesn't seem fair. I hope they can make your dad as comfortable as possible. I'm praying for you both. Treasure all the years you've had together, I'm sure you have some wonderful memories. No one can take those from you. Makes you realise how precious life is and how we should all make the most of everyday.

Stay strong but don't be afraid to show your emotions (I cry all the time, it's nothing to be ashamed of, as Sandra says, it shows you really care).

Steve.

User

Posted 29 Aug 2015 at 15:13

Hi Paul
Shedding tears doesn't make you any less of a man. I guess you already know that . I read a post from Lyn Eyre the other day that just let a months worth go . On my own . But that was fine . Spend all the time you need with your dad . You will recover afterwards . So sorry
Chris and El

User

Posted 30 Aug 2015 at 22:59

I've felt much better today. I have alsoo visited twice, the 2nd time on my own this evening. He is hallucinating because of the drug regime, but although he seems to hear what we are saying, we cannot have a conversation as responses are virtually nil.

The staff are brilliant with him. This afternoon, I thought he could go any time soon, yet this evening I thought this could go on for some time yet. The staff understandably won't commit to a time scale.

So it's just a case of having to......

Stay Calm And Carry On.

User

Posted 31 Aug 2015 at 08:47

Thinking about you Paul, you are being the best son a dad could want right now. Kev

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

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