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Dad - not looking good

User
Posted 04 Aug 2015 at 20:09

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.
User
Posted 02 Sep 2015 at 09:41
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

User
Posted 04 Sep 2015 at 23:45

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

User
Posted 19 Aug 2015 at 09:12

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 19:30

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 05 Sep 2015 at 10:24
Paul

I hope Lyn's words will comfort you. I have heard the same explanation too. I was told that the mind is not in conflict with the body at all, in fact they are working with each other very carefully to ensure the least troubling departure.

It is hard for any of us to watch a loved one die, we stay with them, hold their hands, talk to them and offer any comfort that we can. That is all we know how to do.

My thoughts are with you and your family. Some may crticise me for saying this but I do hope this can soon be over for you all so that you can leave death behind you and start remembering life again.

Best wishes and a very big virtual hug from me

xx

Mo

User
Posted 07 Sep 2015 at 16:27

Paul, I have been following this thread with teary eyes (my Father slipped away earlier this year)!

Please accept my sincerest condolences.

I will pray that he rests in peace!

You have been a loving son, which is all any Father could ask for!

Look after yourself!

Pablito

User
Posted 05 Aug 2015 at 01:36

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

 

 

User
Posted 05 Aug 2015 at 03:11

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 :-(

Edited by member 05 Aug 2015 at 03:12  | Reason: Not specified

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

User
Posted 05 Aug 2015 at 07:52

Thinking of you sixfoottwo

We can't control the winds - but we can adjust our sails
User
Posted 05 Aug 2015 at 09:20

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

User
Posted 05 Aug 2015 at 09:59
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

User
Posted 06 Aug 2015 at 22:36
Paul

that is good, dont forget to ask her to impress on your Dad that using the stick is really important.

xx

Mo

User
Posted 13 Aug 2015 at 04:15
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

User
Posted 13 Aug 2015 at 10:55

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

User
Posted 17 Aug 2015 at 23:32
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 07:46

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 08:33

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 09:54
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 23:06
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 20 Aug 2015 at 09:00

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 09:44

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 17:41
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 racing in the Sahara April 2018

User
Posted 20 Aug 2015 at 20:29

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 21 Aug 2015 at 09:17

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 09:45

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

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 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

xx

Mo

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.

xx

Mo

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

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

xx

Mo

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

If life gives you lemons , then make lemonade

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 racing in the Sahara April 2018

User
Posted 31 Aug 2015 at 18:15

Nothing except be there and to care - just like you are doing.

I feel for you, having been where you are now.

It isn't easy.

Just do your best, it's all anybody could ask of you.

Thinking of you and wishing you all the best

We can't control the winds - but we can adjust our sails
User
Posted 01 Sep 2015 at 05:43

Times like that must be a real boost.
I hope your Dad has more of those good days.
I'm thinking of you

Paul

User
Posted 01 Sep 2015 at 06:20

Oh that's really lovely Paul.
Even if it doesn't last your mum (and your brother come to that) will have that happier memory

We can't control the winds - but we can adjust our sails
User
Posted 01 Sep 2015 at 08:53

My thoughts are with you Paul,

 

Fiona. x

User
Posted 01 Sep 2015 at 09:35
Paul

that is lovely to hear, those good days make the bad days a bit more bearable.

xx

Mo

User
Posted 01 Sep 2015 at 23:12

We have tried to ask questions about Stan's treatment but the consultant was able to hide behind a 'patient is dead therefore I can't get his consent to share this information with you' and we got no further which was disappointing as we made it clear we did not want to complain but to understand whether there was anything significant that might affect John. In particular, we wanted to know whether stan definitely had adenocarcinoma or whether there could have been some small cell in there.

On that basis, my advice would be - if you really want to know this stuff - to do some gentle questioning right now of his current care team rather than wait until later.

In my experience, there is often a brief spell of brightening and increased clarity before the person slips away from you again. You are in my thoughts my friend.

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

User
Posted 02 Sep 2015 at 11:32

That's so thoughtful of you Mo and I'm sure will be a great comfort to Paul.

Paul, enjoy your golf.

You do deserve to finish what you started and I'm sue it's what your dad would want you to do.

We can't control the winds - but we can adjust our sails
User
Posted 02 Sep 2015 at 16:34

Fantastic news Paul , and lets face it you need a bottle each to be fair after a long day out . Well done you for taking some time for yourself. Our best wishes with you . Stay strong
Chris and Elaine

If life gives you lemons , then make lemonade

User
Posted 02 Sep 2015 at 16:42

Paul,

 

Sounds like your golf is the equivalent of the competitive obedience training and competing I have done with my dogs for years. Like your golf, I needed that to survive through Neil's illness and death, the dog training community of which I'm part and my wonderful dogs have given me something to live for over the last few years. Well done on your success, something to help de-stress from the situation with Mum and Dad. You are doing everything, they would be so proud of you. I am keeping you in my thoughts,

 

Fiona. x

User
Posted 02 Sep 2015 at 16:54

Well done Paul and partner. A well deserved win

Enjoy the wine when you get time.

Hope dad is still able to communicate when you get there

We can't control the winds - but we can adjust our sails
User
Posted 02 Sep 2015 at 19:14

Originally Posted by: Online Community Member
Paul

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

 

Stan was the opposite - he waited until John went off to a rugby match and the rest of us were out of the room on various errands. Devasating for all of us, particularly John, but as always Stan did things his way.

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

User
Posted 02 Sep 2015 at 21:50

If it did happen that way Paul, I think you would have to accept that he perhaps chooses - I have a friend who is CEO of a hospice and he once told me that he has known patients hang on for days because the family never left their side. His view is that for some people, their worries for the loved ones they are leaving behind keep them here for longer than expected. For others like Mick and my mum, having people close by maybe eases their mind and allows them to let go. My friend also said there are those who seem to wait to be told it's okay to stop fighting, as if they need the reassurance that everything is in order.

My mum stopped speaking quite some time beforehand but she was still able to mouth along with her favoutrite songs which we had on loop. My nanna had totally lost the ability to communicate but on her last day, was able to join in with me on a couple of her favourite hymns - music is a wonderful thing which evokes powerful memories and brings calm and recognition.

Thinking of you all x

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

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Posted 02 Sep 2015 at 22:35

I do tell my dad that we're looking after mum, and all is in order. I guess that as a family, we are with him on average between 4-6 hours per day. I honestly believe it is the thought of mum having to cope on her own that is keeping him going. I have never thought that people may choose to go alone or with the family. It's obviously come from a reliable experienced source. One thing is for certain, the human spirit is amazing.

Paul

Stay Calm And Carry On.
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Posted 04 Sep 2015 at 23:47
My thoughts are with you, I have been in your position with my mum "morphined" for weeks before finally losing her battle - I would not wish it on anyone.

Remember the good times.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
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Posted 07 Sep 2015 at 03:29

In our thoughts and in our prayers.....

User
Posted 07 Sep 2015 at 03:32

Your Dad is at peace now Paul and you gave him all you could. RIP.

User
Posted 07 Sep 2015 at 07:25

Deepest condolences to you and your family Paul.

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Sep 2015 at 07:43

So sorry from us both . At peace now
Chris and Elaine

If life gives you lemons , then make lemonade

User
Posted 07 Sep 2015 at 08:27
Sorry to hear this Paul, but hopefully you can have some peace for yourself now. You did everything you possibly could and more

Arthur

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Posted 07 Sep 2015 at 09:06

Thinking of you Paul. X

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Sep 2015 at 09:06
Hi Paul,

I'm so sorry to here about your dad. Treasure the wonderful memories you must have. He is at peace now.

Please send my love to your family.

I hope you're ok. Feel free to contact me anytime.

Steve

User
Posted 07 Sep 2015 at 09:11

Sending condolences to you and your family, Paul.

 

Love, Fiona.

User
Posted 07 Sep 2015 at 09:29
Please accept my sincere condolences on the loss of your dad.

You were a wonderful son to him.

My thoughts are with you and your family.

User
Posted 07 Sep 2015 at 10:05

My condolences to you and your family. A brave fight from a brave man. Your care for him was exemplary and surely eased his passing in the knowledge your love and thoughts were with him.

User
Posted 07 Sep 2015 at 10:49

My sincere condolences go to you and your family Paul... 

I went through a similar experience many years ago with my father

Luther

User
Posted 07 Sep 2015 at 11:23

I am so sorry Paul.

I only hope that if either myself or John are ever in the same situation, that our son will do for us what you have been doing for your mum and dad.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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Posted 07 Sep 2015 at 11:53
Paul

My sincere condolences to you and your family. Your Dad is now at peace.

You have been such a wonderful son to him and will continue to be for your Mum. I have the upmost respect for you.

My thoughts are with you

xx

Mo

User
Posted 07 Sep 2015 at 16:52

Paul

You and your family are in our thoughts.

Chris and Dawn 

User
Posted 07 Sep 2015 at 18:52

Once the initial sadness has passed Paul, I wish you the peace of mind of knowing that you did everything you could, nothing was left unsaid and no regrets.
Love Lyn xxx

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

User
Posted 07 Sep 2015 at 20:56

Condolences to you and your family Paul...

I am going through similar with my aunty...but she is clinging on..terrible to watch

Bri

User
Posted 07 Sep 2015 at 21:55
So sorry to hear your sad news Paul,.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
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Posted 07 Sep 2015 at 22:18
My condolences to you and family Paul

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

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Posted 07 Sep 2015 at 22:34

My sincere condolences to you and your family.

User
Posted 09 Sep 2015 at 20:46
Hi Paul

My sincere condolences on the loss of your dad, RIP.

Regarding your mum, this was what my mother was like and for months we'd remind her that dad had died (she often said he'd run off with some woman!). It was truly awful to witness the shock on her face each time so after a while we stopped and told her he had gone to work and she would accept that. I don't know if your mum has a similar condition to my mum's (it was vascular dementia) and she was mainly happy as long as we kept the truth from her.

A really hard time for you Paul, I hope you find a way to make it easy on you all.

With my sincere condolences

Allison

User
Posted 09 Sep 2015 at 21:05

Hi Paul,

Sorry that you're having to cope with this too.

My mum has been in a dementia care home for a couple of months now but she is slowly getting worse all the time. 

She doesn't know of my illness and I don't intend telling her otherwise I suspect it would be like Allison said, I'd have to tell her again and again and upset her.

It's not what any of us wants to have to cope with, especially on top of everything else.

Wish I could help in some way, but all I can do is try to send you encouragement in my posts.

Take care.

Steve

 

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Posted 04 Aug 2015 at 22:41
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

User
Posted 05 Aug 2015 at 00:53

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 Aug 2015 at 01:36

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

 

 

User
Posted 05 Aug 2015 at 03:11

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 :-(

Edited by member 05 Aug 2015 at 03:12  | Reason: Not specified

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

User
Posted 05 Aug 2015 at 07:52

Thinking of you sixfoottwo

We can't control the winds - but we can adjust our sails
User
Posted 05 Aug 2015 at 09:20

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

User
Posted 05 Aug 2015 at 09:52

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 Aug 2015 at 09:59
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

User
Posted 06 Aug 2015 at 22:34

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

Paul

Stay Calm And Carry On.
User
Posted 06 Aug 2015 at 22:36
Paul

that is good, dont forget to ask her to impress on your Dad that using the stick is really important.

xx

Mo

User
Posted 10 Aug 2015 at 10:01

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 Aug 2015 at 11:06
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 Aug 2015 at 14:54
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 Aug 2015 at 23:27

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

Stay Calm And Carry On.
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Posted 13 Aug 2015 at 00:51

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

Stay Calm And Carry On.
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Posted 13 Aug 2015 at 04:15
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 Aug 2015 at 10:55

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 Aug 2015 at 08:07

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

Stay Calm And Carry On.
User
Posted 14 Aug 2015 at 08:28

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 Aug 2015 at 09:21

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
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Posted 14 Aug 2015 at 12:51

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

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Posted 17 Aug 2015 at 23:07

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.
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Posted 17 Aug 2015 at 23:32
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

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Posted 18 Aug 2015 at 07:46

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
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Posted 18 Aug 2015 at 08:33

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.
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Posted 18 Aug 2015 at 09:54
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

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Posted 18 Aug 2015 at 21:50

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

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Posted 18 Aug 2015 at 23:06
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

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Posted 19 Aug 2015 at 09:12

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
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Posted 19 Aug 2015 at 19:30

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

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Posted 20 Aug 2015 at 00:31

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 20 Aug 2015 at 00:32  | Reason: Not specified

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Posted 20 Aug 2015 at 09:00

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
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Posted 20 Aug 2015 at 09:44

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 17:41
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 racing in the Sahara April 2018

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Posted 20 Aug 2015 at 20:29

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 22:59

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 09:17

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 09:31

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 09:45

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

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

xx

Mo

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.

xx

Mo

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
 
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