Tuesday, January 12, 2016

A Vivid Day

Last night we had a visitation from two night nurses, who arrived at 8pm as FL was nibbling at a segment of orange,  They were here to put him to bed, and he was the first of many cases on their list, so there was no time to mess about with fruit!
Once they got him moving, he was swiftly dispatched and was soon asleep.
He slept through to 7am, when I had planned to get up, to reach the hospital on time.
However, almost as he woke, his bladder and bowels decided it was time for a violent movement, and I had no time to fetch the bucket.  Luckily, some of you had warned me that this might happen and his side of the bed was well-padded with towels and a mattress protector, so it could have been worse.
He was sick in the bathroom while I was trying to get him into the shower.
It took over an hour to get him cleaned up and the bedding stripped and into the washing machine, so we were an hour late for the hospital appointment.
But it didn't really matter, because they had decided not to give him a transfusion.
We saw the Consultant, together with the fantastic MacMillan nurse.  I told the stories of what had happened on Saturday and this morning and it all confirmed the decision to seek admission to the hospice.  FL is now in full agreement with the plan.
The MacMillan nurse went off to ring the hospice to find out how near FL is to the top of the waiting list.
Meantime, the Consultant went through FL's drug regime with me, and set about minimising the number of pills he needs to try to swallow.
He has gone from 23 pills a day to 16, and 8 of those are paracetamol.
No more antibiotics or bone strengtheners or water pills or stomach-protectors (omeprazole)

The new regime is:
A half dose of Acyclovir, twice a day (to prevent another attack of shingles)
Pregabalin, twice a day (to counteract the post-shingles pain)
Paracetamol, two tablets, four times a day
And a different painkiller:  Hydromorphone, one capsule, four times a day (instead of the Oxycodone / Oxynorm regime)
He will still take his inhalers as necessary.

The Consultant said that she did not think blood transfusions were a particularly good idea at this stage.
"This stage" is definitely coming a lot faster than any of us anticipated.

The MacMillan nurse brought me a cup of tea and the news that FL is being considered "a priority" on the hospice waiting list (of 4), so it is hoped that he will get a bed within the next few days.
We discussed the possibility of him staying in the hospital while he waits, but the system is such that if he has a hospital bed he is no longer a priority.  The MacMillan nurse said that in practice he has never known anyone make the transfer from hospital to hospice.  Ah.  

So we are home again.  The district nurse has rung to check up on us and to confirm that the night nurses will attend again tonight.  I have their number to call for help if we have an emergency.

So it is still not an ideal situation, but we are less alone.

As I write, FL is asleep with his head on the table.  I need to light the log-burner and then go and make the bed.  I bought another mattress protector in a flying visit to the supermarket on the way home.  And another pair of pyjamas.

Your continuing concern and moral support is very much appreciated.  This blog has brought so many kind-hearted people into my life over the years, most of whom I will never meet, but who feel like friends.
Thank you.

I finished knitting my first Vivid blanket square in the waiting room today.
It is pictured above with some friendly owls and gnomes :)


66 comments:

Mags said...

This is encouraging. Hang in there. Thinking of you x

Mindo said...

I am glad that people are listening to you, and helping you and FL. Here's hoping that a hospice place won't be long in coming.

poppyinstitches said...

Been thinking of you today, so glad the hospital dr's are listening. x

Sarahel said...

Phew, thank goodness this sounds like some progress. And thank goodness for the knitting to get you through this. You remind me I've wanted to knit the Vivid blanket for a while, but first I must finish the Angelus Novus that you inspired! Hoping for a peaceful night (I typed knight by mistake - but maybe one of those would come in handy too!)

Jen Forsythe said...


Hi Roo, I've been following along the blog, but haven't always had the time to comment, as I am still to-ing and fro-ing to hospital to see my dad, who is in a similar position to FL. (only a different cancer)I am relieved to hear that FL may have a place in the hospice soon. Even though it's been really difficult the past week or so, at least you know you gave it a try at home. Sometimes you have to do that to realise that there has to be another plan. I've been through a lot of that with dad, the bodily functions giving up, the bed changing, the falling asleep into meals, the slipping off the chair etc , but with all the love and support and will in the world, there is only so much we can do. I am waiting for a permanent place in a nursing home for my dad now that is nearer me. (He was 20 miles away) He is on morphine constantly too (cancer spread to bones) and so he needs constant nursing care.

At least this way you won't be run ragged trying to do all the practical caring, and you can be more 'present' when you are spending time with him. It will still, obviously, be very hard but definitely the best option in the circumstances. The hospice are so supportive to family also, as I had that experience with my mum eight years ago and it does help a lot.

Hope you hear something soon.

Jen

pamela said...

Thinking of you both. I hope the next few days are calmer while you wait for the hospice bed. At least you now have some support at home. I check in to your blog every day and was really concerned about your isolation, especially while the weather is so unpredictable. Keep safe and don't hesitate to yell for help if you need it. Warm wishes to you and FL.

sewalign said...

Its good that you are being considered as a priority. I said a prayer for you both. Caroline

Knitlass said...

Glad to hear things have progressed with the support and consultant and waiting list. Wishing you and FL much peace in the next few days.

And, lovely knitting!

Su-z said...

I am glad you seem to be feeling better about the hospice decision. Doing what's best for you family is not always what you may want to do, but it seems to be best from what I have read. He may feel better and be more alert once he's watched over by hospice. That was the case with my grandmother. And it will likely be better than the hospital! Good luck moving to the top of the list.

Athene said...

Glad that you are not on your own in this situation any more - at least having the nurses call in to put FL to bed means you won't have a repeat of what happened at the weekend. Hope that a hospice place is available for him soon, you'll be able to spend as much time there with him as you want - dog permitting of course. And yes, thank goodness for knitting as said above.

Jodie said...

I've been checking in and am glad that progress has been made in regards to support. I wish there was more I could do - if only I lived close enough. I hope that phone calls and support continue and that you both soon have hospice support. Best wishes for a peaceful night

Lorna A said...

I am glad you seem to be getting the help you need, hopefully it will make "this stage" a more comfortable memory when you look back.
I was told by my counsellor I need to stop worrying about other people's circuses and their ponies, but I think I might make you my exception. X

rosylea said...

It's encouraging that some help is being offered, and I do hope that the hospice bed comes up very soon. Wish I was nearer and could do something! Your knitting is inspiring and beautiful as ever. Wishing you both a peaceful night. R

Christine Alber said...

Hi Roo - Just another one of your faithful but silent followers ... Another quiet voice adding my support and prayers for you and FL. I am ever impressed by your humor and strength, although I'm sure your life does not feel very funny or empowered right now. Wishing you well, Chris

LinB said...

We all have to walk the path that leads through the valley of shadow, but some of us have a harder walk than do others. I am so glad that FL has you to hold his hand (and his head, and his pills, and a washcloth, and the telephone) as he makes that trip, to keep him steadily on the path back into the light. Prayers from this corner of the world are to hold you and FL in the light in the days and weeks ahead. Remember that you are loved.

Suzie said...

I have a lump in my throat as I read your blog today. I am sending you hugs and prayers in hope to give you comfort. To say I'm sorry you and FL is going through this is an understatement. You are an amazingly strong person. I hope you get into FL hospice care very soon.

agirlinwinter said...

So pleased to hear you are getting some support. Take care x

jessica said...

The last days/weeks have been trying indeed! What courage and strength you've shown. It never ceases to amaze me just how much we are capable of, when the situation asks it of us - and yet, truly, not everyone has it in them to take care of things and carry on as you have. I am glad there are small gifts in the day (knitting, kind notes, Macmillan), and hope they continue to stay with you through the coming days/weeks.

I am so sad and so sorry that things are at this stage already. Thinking of you both and wishing you the absolute best that is possible.

Jane Neave said...

At long last you are getting somewhere with the help you need. Keep strong and know you are doing your best. My thoughts and prayers are with you both. Xxx

Charlotte said...

Oh well that's encouraging news -- at least you're no longer abandoned on your own. Although I'm so so sorry that it's coming to this. Prayers for the most peaceful and well-medicated transition that is possible, surrounded by care and warmth and clean bedsheets.

Maeve said...

'They' are taking you serious at last. Hope it doesn't take too long to get the hospice bed. At least you have some support now. Take care and stay warm.

from103 said...

So glad they have started to listen. I imagine you are exhausted. So glad you did some knitting. Keep going, Steph

Miss Norm said...

Roo, the hospice will be a blessing, you can go back to being his FIRST LOVE, let the hospice look after you both.

Sending much love to you Roo, FL and the kids xxx

CarolS said...

Better news, thank you for letting us know. Well done with it all today

Jenni said...

Hoping FL can go to the hospice soon so you can go back to being the wife :)

Stephen Greene said...

You're still on your own and you continue to bear the bulk of the load as caregiver. I pray that a hospice opening is imminent. You both deserve the little bit of relief and comfort it will bring.

Blessings

Susan said...

So pleased that you are finally getting some support, my thoughts are with you both.

Jennifer Hill said...

So relieved things do seem to be progressing...hope the hospice place comes very soon. You too feel like friend now (you must be, to put up with all my daft comments!) Jen

christina neumann said...

As everyone has said, I'm so glad you're getting help. Hospice will make all the difference for you. I' sure we all wish it were different but ,we all must face what you are facing, sooner or later.
Best thoughts to you and FL.

Helen // Grosgrain Green said...

Thinking of you. I'm so glad you are finally getting some help.m

Mog said...

Just checking in, Roo. Sending virtual support and hopes that you both get back onto an even keel very soon with the support you need. You're an angel. X

Saffi said...

Thinking of you today, Roo. Hope the hospice comes through for you, and takes care of you and FL. The knitting looks gorgeous and fuzzy.

Saffi said...

Thinking of you today, Roo. Hope the hospice comes through for you, and takes care of you and FL. The knitting looks gorgeous and fuzzy.

Jackie Dean said...

I can only say what everyone else has said and hope the hospice place is available soon. Hugs, love and payers for you both x

greenmtngirl said...

So glad to hear that there is some progress towards the hospice and at least a little bit of help at home. Support and hospice will make such a difference for FL and for you; I hope that it's available soon. I think you will be able to be so much more present with FL when the threat of disaster and having to cope with it so alone is not looming over you. That's been true in our family with hospice, anyway. You are doing so well, Roo--I can't help but think of your feeling like a traitor yesterday but you are doing exactly what you need to do in order to have as much peace and comfort as possible for you and for FL. Sending love and comfort like so many others before me.

leslie said...

Just thinking of you and FL, hope the hospice comes through for you soon! Meanwhile sending strength & happy knitting wishes (your knitting is beautiful!)

Mairead Hardy said...

Sending positive vibes that all the promises being made will come to fruition and you will get the help and support you both need. Thank heavens for knitting!

Jenny Larking said...

Loved your opening sentence. "A visitation from two night nurses". Sometimes those nurses seem like visiting angels, but mostly they have so much to do and so little time they can seem too rushed. However it is much better than having to cope completely on your own as you have been. Just adding my wishes that a hospice place will become available very soon and you can just spend time with your FL rather than having to worry about how you can cope.

Redhedhels said...

Glad that you are getting some support and that everyone seems to be on the same side at last, including FL!Take care. xx

Birgitte said...

Ruth - I carry you and FL in my heart as you navigate these days. You might not feel strong, for doing what needs to be done, but you are (we see it, and we see you). I'm sure your presence and care for FL is a great comfort to him these days, and I hope this wonderful network of online friends of yours are offering you some comfort too. I'm sure so many of us wish we could offer practical help as well. All my love, Birgitte.

sewstyled said...

Glad to hear you are getting help at home and that the MacMillan nurse is in your corner. Although things are going in a direction than you envisioned, you will probably feel a sense of relief when FL is in the hospice, knowing that he (and you) will be getting the care he needs any time of the day. I hope it's close to the farm for you.

Philippa said...

I have only just started to read your blog at this particular time. I recently got divorced and moved house and retrained and haven't much time to sew, so I read sewing blogs before bed to keep my interest going. I had seen a couple of your posts somewhere before and I thought, that roobeedo knits and sews some cute stuff, I'll have a look at what she's up to. Then I read the last few posts with increasing feelings of anger and alarm. My retraining is in health and social care. I chose this because I wanted a job that would have meaning, and help people. If I could I would come straight over to help you now. I look after people with all kinds of life limiting illnesses in their own homes for as long as possible, and deal with the kind of things you are facing every day. Even in 'perfect' circumstances (say living in a town with all amenities to hand) it's hard enough. You have coped brilliantly, and couldn't have done more, but everyone needs a hand at this time. I don't see you as crumbling, but as someone who has managed admirably and should be very proud of how you've handled all that's been thrown at you. I just hope that at some point, someone will make you a cup of tea and wrap you in a big hug xx

Lynn said...

Sending warm thoughts. Hang in there Roo!

amajorbreak said...

I'm keeping everything crossed for you and FL, I hope that you get a place in the hospice soon so you can focus on FL and not have to fight for what you both need. I think of you both often and feel privileged that you are allowing us to share on your experiences; I'm glad that our comments bolster you up as I'm sure I'm not alone in wishing I could do something to help. Sending lots of love to you both xxx

seashell bluez said...

Do not be surprised when you reach the point at which you just wish it could all be over with because you are weary of seeing him suffer and you are weary of living this way yourself. That is a very normal reaction. I felt guilty when that happened but talked to others who reassured me that this feeling can occur when you are overwhelmed and exhausted and know that nothing will improve.

I do hope your husband gets into hospice care soon where professionals can monitor him 24/7 and adjust his pain meds up as needed. If he is permitted to take anything, something that smells like you might be a source of comfort to him.

MaryinTN said...

Roo, I am glad they are finally listening. I pray the hospice bed is available soon so FL can be cared for by professionals and you can be the wife again. DH and I are both very sorry at the condition FL is in. Sending you and FL warm and loving thoughts.

Unknown said...

So sorry to hear that things are progressing faster than anyone thought possible, but this all sounds so familiar. I am praying that a hospice bed will become available very quickly. I agree with MaryinTN...you need to be his wife again. I am blessed to have found your blog a few years ago through Paula K.

Mary said...

Hi Roo

I'm glad to hear things sound more under control. It is still a sad time however and I am thinking of you both and wishing you the best that can happen from now on in. Mary

Sarah said...

So glad that you are being listened to finally, and thank God for that McMillan nurse! Praying for you both. sarah@forrussia.org

Miss said...

Dear Roo,
I am so glad that the doctor and Mac nurse could make practical changes (number of tablets) and weigh in (call to hospice), and that the night nurses showed up. Are they also going to help you getting FL up in the morning? Is there room for the bed to be downstairs, is it warmer there?
I am touched, if I may say so, that FL recognizes he needs the care of a hospice.
Bless you two and your family. Thinking of and praying for you daily x

sulkycat said...

Very good news that you are both getting more support. Dearest C, who will be known to many knitters, said that being in hospice made her feel safe, calm and more 'ready' for what was to come.
It will also give FL a large degree of dignity back, and some support and space for you.
Wishing you both much kindness and sympathy.

Sewing as Therapy said...

You sound better today, despite the challenges. Here's hoping FL gets to the top of the list Really Soon! Hang in there Roo!

Isabella said...

Hang on in there. Don't you have any offers at all from friends and neighbours to help? I don't mean for practical care but for ordinary stuff, going to the supermarket for emergency PJs, walking the dog etc. Even if I was a complete stranger living next door to you I'd hate to think that you didn't feel you could knock on the door, explain the situation and ask for a few shreds of help.

Which reminds me, the dog. You've probably thought of this but you need an emergency plan for the dog. You might end up departing for hospital or hospice very suddenly and then not returning for a few days. You need a plan here. Have you a friend with a key that can come and get the dog and look after it until you return home? If not you need a willing neighbour with a key who can take the dog to the local boarding kennels, if you get in touch with the kennels now and explain I'm sure they'll understand and be ready to take the dog as and when. That's the kind of thing I as a neighbour would be very happy to help with.

(((hugs)))))

Lynne said...

I was a bit scared to read your blog today, but now I am so relieved... as you say, it is still not quite ideal, but you are doing a wonderful job. And I am so glad to hear you and your FL are a priority now!! I am so glad, and I am a bit sorry for being so scared and a bit pushy, but honestly, the fall and his condition were scaring me from afar! So... at least now you have some help, and that is a good thing. I am praying for you and your FL. It is one of the hardest things imaginable, that you and your FL are doing and sharing now.... but there is great love there too. I was always so impressed by the couples or families who had such love during these times...it is a beautiful gift. It is an awful and sorrowful time too, but there is beauty in the love and in the acts of love when you care for him in such hard times. Prayers, for whatever you and he need, that is all.

Eirini said...

What a relief to finally be able to count on external help! I hope you and FL feel safer now, I am praying for you.

Laura said...

The wheels of the system grind exceedingly slow, but it sounds like they're mobilising at least. Just having the nurses come sounds great, and that the district nurse is aware must make such a difference. And huge respect for the MacMillan nurse for helping you navigate the system - sometimes you just have to make the right noises, which is silly but sadly how the world works.

Also, you generally get the blog followers you deserve, and you definitely deserve all the love and support you've been getting. We can't do much but listen, but we're here for you as much as we can be.

Much love xxxx

Kestrel said...

Glad to hear that FL is being treated as a priority and hope the move for a hospice place is swift. You are doing an amazing job to keep everything together

Love xx

Cartervater said...

Dearest lovely lady, I've not posted before but read your blog every day. My heart goes out to you and FL and I know that nothing said can ease what you both are going through, but just know you are much admired and supported mentally.

My mother is in the early stages of multiple myeloma, having just gone through 7 months of tablet chemo. I fear the future, but hope I will be able to deal with everything as stoically and sensitively as you are.

Hugest hugs to you both
Ewa xxx

RooKnits said...

You are never far from my thoughts Roo. Hugs from afar x

Violet said...

You are doing a wonderful job.

Karen Venables said...

So glad to read that you're finally getting some support. I hope you can get FL into hospice sooner rather than later. Hang in there, you're doing an amazing job under very difficult circumstances - I'm glad you have your knitting to help you cope.

CarolS said...

The comments here are wonderful and I do hope help you with the burden you're carrying. Your continuing strength is a source of wonder to me and a marvellous exemplar of the power of love. Life is messy, frustrating, very hard, very distressing and exhausting now but you're there, right in it, not ducking a thing. Loving your FL and knitting. Getting up to it every day and facing it again. Wow. xxxxxxx

India McMillan-Dickman said...

Hope last night and today are easing up

Susie Hewer said...

Thank goodness you are getting some support at last. Hang in there lovely lady. Much love and hugs, Susie xxx

Jen said...

I'm so glad you are getting some help and have people to call if necessary. Your Macmillan nurse sounds fantastic. Like others have said, you and FL are in many people's thoughts...Take care, sending hugs and support xxx

andsewtoknit said...

Good thoughts and hugs from here, wish I was nearer to give you some practical help {{{hugs}}}