Friday, December 18, 2015

Advent sock day 18

Today was unexpectedly stressful.
Having developed a plan for FL's release (and yes, it has started to feel like a penitentiary in that ward) I thought that this day would be a calm one.  
I said goodbye to work for the year - hooray!
My dear friend Christine was up from Glasgow and we met for lunch - hooray!
And then I went to the hospital.
FL was fast asleep, lying down.  It has been weeks since he was last able to lie flat without coughing, so hooray again!
When he woke, he said he had a day of disturbances:  the Occupational Therapist had been to check if he needed adaptations at home and he had said no; there had been blood tests; there had been lunch, just at the point when he most wanted to sleep.
But there had been no sign of a doctor, a physiotherapist, or social services.  
I settled in with my knitting and he dozed beside me.
I was just thinking it was time to head home before the rush hour, when the ward doctor arrived. "Would FL like to go home?"
Um... sorry?!
"Well there is no point in him being in hospital when he is well enough to go home, so why doesn't he go home - he can go NOW if he wants!"
I was taken by surprise.  I explained that the MacMillan nurse was working on a plan for help at home and for the management of future care at the community hospital, but that nothing was in place yet and I had thought we were aiming to go home early next week...?
"Well, tomorrow then.  How about tomorrow?"
FL thought this sounded like a good idea.  And seeing the hope in his eyes, I could not bear to be the obstacle to him getting home, so I agreed.
As soon as the doctor left, I went into panic mode.  I went to see the staff nurse to ask about the social services referral.  Nothing had been done yet.  She said she did not understand what help I thought I needed:  if we had managed before FL came into hospital, why would we not manage now?  He had told her he was fine and didn't need any help at home.
FFS.
So I emailed the MacMillan nurse from my phone, hoping against hope that he might still be on duty.
FL was waiting for me, all set to go home there and then.  Quite apart from anything else, I knew we didn't have enough morphine to last until the GP's surgery opened again on Monday.  FL said he would manage.  Ridiculous!
I was just trying to explain the very many reasons why we needed not to leave hospital there and then when the MacMillan nurse appeared, with the staff nurse at his side.
The relief!  I cannot tell you how pleased I was to see him.
He listened to my concerns and to FL's plea for release.  The staff nurse had just then made a referral to social services and we were told he would be assessed in 7 to 14 days, but that this could be done at home.  7 to 14 days?!  That was the clincher.  There is no way I could have FL spend another 2 weeks in that place when his weeks are limited!
The MacMillan nurse could sense my panic and saw the pressure I was under to agree to FL going home.  He asked what he could do to help me.  I explained I did not know who to call upon if we needed help, particularly at the weekend.  What was the plan for his future blood tests / review / support?  It was just all too fast, there were too many uncertainties.  
So he suggested making an immediate referral to the district nurse service, to have someone come in on Monday to make sure we were coping, and to check FL's blood count as a medical justification for the visit.  He said that if we were having problems, the district nurse would be able to help hurry along social services - brilliant!
Once again, MacMillan to the rescue!
It was agreed that FL can come home tomorrow, with a big bag of drugs.
FL is still mystified by my insistence that we need help.  As far as he is concerned we were doing fine on our own until now and will continue to do so.
But something has changed in my mind.  Before he went into hospital, FL was the same man I always knew, the man who has lived with a cancer diagnosis for over 8 years, for better and for worse.
But now?  Now he is "terminally ill".  I feel the weight of a terrible responsibility to care for a dying man in his final days / weeks / months and I really don't know how to do that.  
I don't know how to look after us.
There comes a point where "us" is not enough.
Thank goodness for MacMillan!



Let's turn back to sock B. Pick the colour according to the colour of the day in Thai tradition. If you don't know the day of your birthday, use e.g. this calculator.

I was born on a Friday, which is Light Blue.  18 rows.  Off I go...
A picture will have to follow tomorrow.
Have this morning's sunrise instead!


28 comments:

Redhedhels said...

I always await your posts eagerly but especially now, when life is throwing you such enormous challenges. Although I rarely comment I think of you as a friend and wish I could do something to support you. But Yorkshire is a long way from Aberdeenshire and so all I know how to do is send digital hugs. Make the most of the season and accept all offers of goodwill. I'm glad Macmillan are there for both you and FL.Good luck for tomorrow. ❤❤❤

Redhedhels said...

I always await your posts eagerly but especially now, when life is throwing you such enormous challenges. Although I rarely comment I think of you as a friend and wish I could do something to support you. But Yorkshire is a long way from Aberdeenshire and so all I know how to do is send digital hugs. Make the most of the season and accept all offers of goodwill. I'm glad Macmillan are there for both you and FL.Good luck for tomorrow. ❤❤❤

twistle said...

Breathe deep, sweet Roo! - FL is in the right place with the right person, how can that not be true, when you care so much that you are doing the right thing! Don't forget this is a time of transition, and that maybe your mind is playing tricks on you, although you now know more about the course of this journey, it doesn't change that FL is actually physically improved from when he went in to the hospital, not in a long term, sustainable way, but in a "how much oxygen his blood can carry and how his body feels to be alive" way. You are enough for him, trust yourself *hugs*

Mog said...

I have no wise words, but know you are amazing, Roo. Virtual hand-holding from one of many wanting to hold you up. Xxx

Haze said...

Macmillan for the Christmas donation from this household.

Years ago when my brother had cancer, my mum referred to the Macmillan nurse as being like a grown up who helped navigate a very strange world.

My thoughts go to you

Knitlass said...

Sending good thoughts your way. Thank heavens for your Macmillan nurse. Everything has changed, but it's all the same - you do know what to do, you've been doing it all this time.

Christmas at home - you both deserve that.

Jenny Larking said...

You're earlier than usual tonight. I always wait to read your post before I go to bed. I can go earlier tonight :) As others have said you DO know what to do, having years of experience BUT you need to know where the support comes from when things start to change, especially living in such a remote area. Macmillan will be your right hand man (or woman).

Lynn said...

While I agree with everyone that you will most likely be just fine over the weekend and going forward, things will change during the next few weeks. You have to think of the future and what you might need and have a right to be worried. There is no reason on this earth that you should feel like you are the only support FL has especially in regards to his physical and medical needs. You should remain his wife, love, and partner. It is perfectly acceptable to be afraid and want help and support for you both.

I wish you the best and an easy passage through this last trip together.

HappyAcademicRunner said...

Thinking of you and FL. Glad you are on annual leave and free to be with him. I'm sure the MacMillan nurse mentioned the Community Macmillan nursing teams :http://www.palliativecarescotland.org.uk/content/services_by_nhs_board/?id=41

HappyAcademicRunner said...

Also Roo, Marie Curie community nurses offer help
https://www.mariecurie.org.uk/help/nursing-services/what-marie-curie-nurses-do

annieloveslinen said...

Bonkers, the nursing profession bang on about end of life care, liaising with family putting a care plan together etc.etc when the actuality can be so very different, it was irresponsible to raise going home right away without preparing you first, but you are where you are so look at the practicalities.

Pain management sounds like your main worry, talk to the MacMillan about how much and how often. Fl will be comforted by being at home and may show some improvement yet there may come a point where you are physically unable to manage, ask now of whoever visits what is available when that time comes and whether the hospice is an option if things deteriorate.

Prepare too for the inevitable, what you would do if happens when you're alone, talk to your family, make a plan, if this, then that, having a course of action planned will go a long way to relieve anxiety about coping.

Saffi said...

Ugh. So sorry that you're having to deal with all of this. Hope the district nurse is able to help. They've always been reassuringly practical when I've needed them.

Saffi said...

Ugh. So sorry that you're having to deal with all of this. Hope the district nurse is able to help. They've always been reassuringly practical when I've needed them.

colleen said...

Sorry that your day was stressful. Hope you had get all the help you need and feel able to ask for it if not. There's some good advice above to think on.

Jenni said...

Thank goodness for McMillan x

Athene said...

If think Lynn ( and others) have said it - you will need support and it's OK to ask for it. MacMillan sound wonderful. I'm so glad they are there to see the bigger picture and to help you with immediate needs. Fingers crossed you can take FL home tomorrow WITH support.

I make a donations each year instead of sending cards, after what you've said I am going to send it to MacMillan this year.

Sabs said...

Roo I don't think you should have FL home until you are ready. And I'm saying this as a doctor and as someone who saw what her in-laws went through in a similar situation. I've so far resisted saying anything medical as it's not my place but I think I must now. You need to be sure that you will be able to cope with caring for him, physically and mentally. I know he wants to come home and I know you want him home but it will be hard to do it alone. District nurses will only come in for a short time, will they be enough? You could asked for the palliative occupational therapist to see you before FL is discharged and there is also a fast track social services referral for end of life care that exists. Could you maybe see if that is an option where you are? As a consultant, I wouldn't be encouraging FL to go home without you having the proper help. I really hope things get sorted xx

Sian Sanford said...

I've never commented before but I have followed you for a long time. I can't do anything for you in a practical way but I think about you and FL a lot and I really hope you have a peaceful weekend.

rosylea said...

I do hope the weekend is as comfortable as possible for you both; thinking of you often. R

Marilla Walker said...

Such a desperate situation and I'm sure all your readers (including me) wish we could be there to help out and reassure you in any way possible. Thank goodness someone was there to listen to you and I hope Monday's assessment goes well and you continue to feel heard. You and FL are of equal importance at this difficult time. My thoughts are with you and FL a lot at the moment xxx

Lizzi said...

It is great for you to know whom you can turn to just now. Macmillan nurses are worth their weight in gold. Just keep leaning on those who can support you - you need that now. Don’t be afraid to ask - again and again.

Kitkat Krispie said...

Of course FL thinks everything is fine! You have been managing everything brilliantly even though you know it is an illusion! You have every right to feel concerned as your are about to sail into un-chartered waters which are different for every individual. Yes it is a huge responsibility, and yes it is tough both emotionally and physically, but you have the best navigator by your side in the shape of a Macmillan nurse. They are simply the best! Not only do they support with the care of the patient they also look after the carers. You will be supported and they will know when to step in. They are trained to spot exhaustion at 50 paces! So get FL's toothbrush packed, in the car and home! Have a good weekend x x

PaisleyPirouette said...

I cannot give you any advice but I am happy that there are others giving you good ones. Take any help you can get. I am always enjoying reading your blog and now, I am thinking at you and I am wishing you strenghth to have a last good time with your FL.

TempestKnits said...

Yes, thank goodness for MacMillan!!! They bring support and compassion where there is a none within the NHS. Ruth, a discharge like this is not unusual. It's because its the WEEKEND, and they will do practically ANYTHING to get people out of hospital so that they are not there over the weekend. I have had experience of this myself, and also with my Father. Much has been reported about there being critically low Consultant cover at the weekends, and with staff sickness at an all time high in the NHS (resulting in the obvious staff shortages) added to by seasonal illness absences, you get the picture. It's woeful, truly! I am hoping for the support so that you can now manage at home. I very much trust that it will happen if MacMillan are involved. Be sure also to make it clear to District Nursing that you are finding it hard to manage. It's not a sign of weakness; rather it's a case of keeping the pressure on so that you do get the help and support you need. I know my Father was the same with his partner insisting 'we managed before' and got rather upset at times, but it really was very, very hard for his partner so we had to gently explain that SHE needed the support and help so that she could continue to care for him. I think if you could in some way speak to your wonderful MacMillan nurse about this, he will very gladly have a very gentle word with FL and explain. Believe me, this is a very familiar scenario to them and they know how help.

Alison said...

I hope FL's release home today has gone as smoothly as possible. We have just reached the end of the journey that you are on and it is not one I would wish to repeat. My Mum died of oesophageal cancer on the 28th November. She got her terminal diagnosis on the 1st August and once the district nurse team were involved it was such a relief. We had a 'just in case' box of very strong drugs that the nurses could administer over the weekend etc to avoid any further hospital stays and doctor call outs. When the morphine started to cause Mum to go a bit crazy she went in to the Marie Curie hospice where she died 17 days later. We are in Edinburgh so I don't know if the district nurse services are the same up north but I hope they are just as good. Try and take care of yourself. Alison x

fabric epiphanies said...

I see so many parallels with your situation and my own at the moment. You see my father was diagnosed with motor neurone disease a month ago. You wouldn't think that necessarily would make our situations similar but he was diagnosed so late that it is also end stage. Even though it is my father I also feel a little out of my depth at times and so sad for him. I work 5 days a week and have 4 kids living at home so can't help my Mum as much as I would like and I know she needs it as she usually doesn't cope well. The most difficult thing to get my head around is that my Dad who was always my sounding block and helped me out when things went pear shape is dependent on everyone. The pendulum has shifted.

We have the district nurse coming in as well as palliative care which is a huge help. It doesn't do us any good to look too far ahead and the only way we can do this is to be thankful for each day and not look ahead.

I think I have only commented on your blog once before but have been reading all of your sock posts and that of your FL's health. It has taken me until now to comment mainly because writting it down makes it somehow more real.

Roobeedoo said...

Thanks so much for reminding me that he is coming out better than he went in! The voice of reason! This was a really helpful comment Twistle! 😊

Laura said...

I'm only just catching up, so I hope all went to plan today. The Macmillan nurse sounds wonderful, and I'm sure between you, him and the district nurse, you'll come up with a cunning plan :)

It's going to be a team effort - you're not doing this on your own, any more than FL is. You've done amazingly already, and help sounds like it is at hand.

Hope you have a peaceful Sunday - we're travelling tomorrow, so I will look out for good news on Monday xxx