Grumpy's Story

[Justamo]

Quickly, I'm so sorry to hear about Jake but I think you did the right thing. Just one of his conditions would have been reasonable grounds for euthanasia and the combination really left you with no choice. No consolation, I know, and there is a dog-shaped hole in your life now.

Good to know that you will be able to settle Dad into a stable routine and that you like and, more importantly, have confidence in, his doctor.

Make the most of this precious time Quickly, every minute is important. I hope you are able to deal with your anxiety issues and remember there is nearly always somebody around on the forum so you can ask for help any time you want. Some of us don't sleep terribly well and logon for 'company'.

Take care my dear and I really do understand your loss of Jake.

Love, Mo

[Dandygal76]

I am so sorry about Jake. It is hard enough to do that when you can cuddle them goodbye, I cannot imagine how you felt making that decision from a distance. If the doctors are talking DNR then I think you have to be realistic that you may be on that tipping point. The cancer just makes them more and more susceptible to infection. My dad got C.diff but funnily enough I only found that out today. We decided to accept the DNR and dad was still talking to us then. He never knew it was put in place. Right until 15 hours before he died he still thought he was coming home. That is the way it had to be for him. You perhaps need a more frank convo with the dr. They told us dad's organs were shutting down and he did not have long when dad was still chatting to us. Sometimes you need to ask them and get the frank brutal reality... if you really want to know then you have to ask the hard questions. It is hard to hear but I am glad we did. As I keep saying though, this was dad's case, you need to shave the bits off (from what I say) that you need as they really are all different. x

[Quickasyoucan]

Thank you everyone for your kind responses. Dg we did have a frank discussion with the doctor and short of saying how long we know we aren't far off. As dad says he can go from hero to zero v quickly. However he is up and has showered himself and so hopefully we will go home today and I hope to at least have a short while of Elaine's diamond days whilst he bosses me around on what is to be done re grooming George his v hairy spaniel and some pruning in the front garden. It could be a day or two or shorter or longer but hopefully we now have some support for nursing type stuff commencing so I can concentrate on being company. Ps he's still prolifically texting as I write this.

[sandraW]

Hi Quickly, just wanted to add I am thinking of you. The thought of loosing my little canine companion is just devastating so I understand how much you are going to miss Jake when you return home.

Its good to hear Dad is feeling so much better, just enjoy your time together, try not to dwell on what's to come and when, just live for the moment.

From your last post it sounds as though Dad is not ready to give up yet, take care love sandrax xx

[PCUK Nurse Jeni]

Hi Quickly,

So sorry to hear this news about your faithful companion Jake.

That's really difficult. Pets are a part of our lives as well. A big part.

I am glad to hear that Dad seems to be up & about today, and showered etc....He must have great strength and tenacity. It would be great for him to be able to go home to his own environment.

You know where we are should you need to contact us at any stage.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[peter2901]

Thinking of you all. Hoping that your Dad can come home and be where he needs to be. God bless xx

[Elaine123]

Just a short post to say I am thinking of you and hoping your Dad can be at home with you. I am so sorry about losing your faithful friend life just seems to keep piling on the heartbreak at times. Think inking of you and stay strong

Elaine

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[Quickasyoucan]

We have been home 24 hrs. Had a bit of a worry re temp last night but dad did not have the shivers that accompanied the previous sepsis so he had paracetamol and temp came down. He has significant liver mets now and I believe that affects temp.

It is daunting to be alone with him as although he is bossy and insists on making his breakfast and all self care he only really sits in the chair and dozes. He is not in any significant pain but says he feels wiped out. This morning I jumped out of bed as I heard a crash. Both he and dog were fast asleep and it was the newspaper coming through the letterbox!

I have been tidying up the garden and my sister has been round. I just feel sad he has no interest in anything,even his beloved George the springer spaniel. He just dozes or sits and stares or occasionally tells me off

[Elaine123]

Hi it may be a good idea to speak to the GP about his low mood as there is medication that can help with this and it may enable him to start taking an interest in his surroundings again. Pete was the exact same but he is on medication now that improves his well being and his appetite and gradually he started to take part in daily life again. None of us can ever really understand what is going on in someone's mind after this diagnosis we just need to try and alleviate the fears any way we can.I am sure the GP can be of help to your Dad.

Elaine

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[sandraW]

Hi Quickly, as well as coping with the disease your poor Dad will be wiped out as he will still be recovering from the infection, and lets be right about it, hospitals are not the best places for getting your rest even though of course they should be. Just lets hope in a couple of days when he is a bit more rested he starts to get bossier and George gets him going again, but at the moment lots of rest is just what he needs. I still think it would be a good idea to have a word with the GP if he is as Elaine says suffering from low mood, and not just feeling shattered. take care love sandrax xx

[Quickasyoucan]

Sandra your comments were spot on. Today he was up and dressed by 730 am and I have been told off more times than you can imagine. He also had a long Skype with my other sister and Kids in oz and is generally v animated today.

He is busy doing admin stuff tho he has insisted in cancelling the paper delivery as he he "no longer needs it" and car insurance but that is sensible as it was up for renewal.

We have the hospice lady coming this afternoon so hopefully that won't dampen his mood. No point in suggesting medication for mood as he won't countenance it.

Today he is more active than most 83 year olds so I'll take that even tho I'm the brunt of the criticism for putting thing in the wrong place!! Love to all

[peter2901]

I agree with Elaine - speak to your GP to see if they can give medication to help with the low moods. But none of us can ever imagine what goes through our loved one's mind at a time like this. Its important to enjoy the good days - even being told off. He probably wants to feel he's in charge of his own life and being independent. As carers and family, we want to do as much as we can to make their life better but sometimes we probably need to step back and let our loved ones take the lead. Enjoy the day and the little things each day brings - memories to treasure xx

[Guest]

Hi Quickly,

Just dropping by to say hi and hope you and Dad are in fairly good spirits. You don't need to respond, I just wanted you to know I was thinking about you.

M xx

[Justamo]

Same goes for me Quickly, hope all is as well as it can be.

Love Mo

[Quickasyoucan]

Thank you for thinking of us. Dad has had some reasonable days tho he has no real energy. He potters around the house and is still as grumpy as ever!

He has managed to catch up on a couple of emails and is still doggedly ordering milk and other things on line.

We had a temp spike last night but paracetamol brought it down. We've been told the liver can cause this.

His ascites are definitely growing but he doesn't want to consider drainage at this time due to infection risk.

We have been given a fast track care referral by the nhs which allows up to 4 carer vista a day. We have had our assessment and have a once a day visit starting tomorrow to see how we go.

I have groomed and trimmed George and am working my way through the garden. I miss my darling jake every day and am going to find it hard when I get back to oz.

[Quickasyoucan]

We are still here in a constant cycle of temperature taking as dad's temp seems to creep up in the evenings and we then take paracetamol and hope it comes down. Because of our several admissions for infection it is constantly in the back of my mind.

Dad had a bad night Friday night but we did have a reasonable day he managed a FaceTime with my aunt a call with a friend and a short walk in the garden and to the end of the street so that's a positive. Not so good today had a dizzy spell and mainly dozing in his chair. He has a low dose patch for pain now.

[Guest]

Hi Quickly,

Sounds like you are coming along as Dads apprentice! It's a weird life don't you think? If nothing much is happening we are anxious because we think it can't last and if something is happening we are anxious to try and deal with it, you can't really relax.

So glad Dad had a little walk and he is doing very well on just pain patches. We used paracetamol and ibuprofen as well as the prescription drugs because they work on pain in different ways. Even with the big scary drugs in place paracetamol can still help.

You are doing a good job Quickly and despite the grumpy nature of your patient, I know he is reassured and glad to have you with him.

I hope you have a peaceful day.

M xxx

[Quickasyoucan]

Thank you Marmalade and I know you understand just how this weird life stage feels. Did manage a dog walk with my sister this morning but otherwise we are housebound. Just wish I'd brought more oz style clothes as dad really feels the cold so we are a balmy 23-24c inside at all times and winter clothes are stifling for peri menopausal souls like me!!!

Ps he may be dozing all day but can still give reminders re lint filters and dishwasher filters that need sorting!!!

[Justamo]

Hi Quickly.

All the time Grumpy is in charge of Mission Control he is directing operations and emphasising that he Hasn't Given Up Yet. Which is good. Even if he is dozing in his chair he is still running things and that shows a positive outlook.

There was something on TV this morning outside Buckingham Palace and the Australian representatives were saying that it was warmer in UK than it was in Oz. I'm glad you got off duty for a little while to take a walk with your sister, you need a little bit of down time while you are here.

I hope you don't have any temperature spikes today, because it really is time that you changed the lint filters and sorted out the dishwasher filters. I shall be checking later on that you've done it.

Take care, Love Mo

[Quickasyoucan]

Unfortunately yesterday's temperature spike went up to 38.4 and did not initially respond to paracetamol necessitating a call to the hospice then to 111 then a call back from a gp. Given dad's history of sepsis we had to start him on the rescue pack of antibiotics which dad hates as it "upsets my guts". Um it's better than a trip to emergency or a rapid death.

Anyway temp declined crisis averted for last night. This morning he was quite chipper and wanted to stop the antibiotics. I had to get telephone consult with his own gp to convince him to continue. General consensus re doziness is first day on transdermal opioid patch was behind it but could also have been start of something which antibiotics now addressing.

Randomly the district nurse turned up today no one having called for a month "to look at dad's bottom". The division and organisation of medical assistance is mind boggling in the uk. It's hard to know who you should call when.

Anyway after quite a bright morning and a tiny bit of lunch dad is feeling "rough" again and has taken to his bed.

I have taken to drinking wine of an evening and given up the idea abstaining just in case of emergency since I am not able to drive anyone's car here anyway due to insurance being astronomical for non residents so at least I'll be calm if we end up in a and e!

Missing my m Jake terribly. Still have to deal with that empty house when I finally get back to life in Australia. I was going to say normal life but it won't be without my canine friend. Just me and silence after 13 beautiful years.

[Justamo]

I was wondering how you were feeling about Jake and now I know. Over many years i have lost 5 cats, and i have mourned each of them. One cat died about a month after my dad died. I wept buckets for my sassy little cat, in fact most of the time i didn't know if i was crying for Dad or Baby, as we called her.

There aren't really any words of comfort for your feelings about Jake and 13 years is a long time to share your life with a friend. Dogs are more devoted and faithful than cats so it's a different relationship and as you say it's going to be hard to return to an empty house. I am so sorry for you Quickly, but from what you have described you took the best course of action before you travelled here.

Try to take comfort from that if you can. There are lots of pet owners on here who all understand just how you feel.

With love

Mo

[Guest]

Hi Quickly,

The emotion is all muddled up together. It's no more possible for you to "get over" or adjust to losing Jake than it is for you to get over or adjust to the situation with your Dad. I feel for you Quickly. Try not to torture yourself with thoughts of emptiness when you go home, it's inevitable that we miss those we love but we find coping strategies, we have no choice. I am alone in the house 95% of the time and I cope by choosing to think of it as my special place, where Louis watches over me and fills my thoughts and heart with millions of happy memories. He is not here but the memories are strong and happy. I hope they will be for you too.

Night night Quickly, sweet dreams x

[Quickasyoucan]

Thank you Marmalade, sage advice.

We had the hospice visit today for a frank discussion about end of life. They gaily told Dad fast track nhs carers as we have are for people predicted to be in the last 12 weeks of life. Not like we didn't know dad's time is limited but ... graveyard humour came out at that stage and I asked her what happens to the funding and you if you exceed 12 weeks - luckily the answer is te-assessment rather than termination!!!

Perversely dad has cheered up, had a good day and eaten more since the visit and has been animated for the first time in 3 weeks. So a weirdly good day which I will take.

[Elaine123]

Hi quickly it is surreal to be sitting there talking about end of life. Maybe your Dads reaction is because some of his fears may have been addressed or a worry he had may have been answered for him. That is great he seemed to have been more animated and that can only be good for you as it can be soul destroying trying to get someone to take part in what's going on around them and getting no response. You must have caused her a bit of a hiccup in the conversation asking what happens if you live past twelve weeks lol sometimes humour is the only way past statements like that. I think it's cruel as who's to say your Dad only has 12 weeks no one can determine that and it's so negative whereas everyone should have hope. It will be good if your Dad continues to eat well today and is more talkative for your sake as it makes caring for him a little bit easier. Hoping you both have a good day . Hugs

Elaine

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[Justamo]

Hello Quickly,

Haven't heard from you for a little while.

How are things ?

Love, Mo