Tuesday, January 05, 2016

The Prognosis

a picture from our last holiday in Ullapool

An entirely unapologetic life-and-death related post.

The fire is lit, the man is asleep.

I have just written to The Boss to request information on my entitlement to paid time off, offering to go into work to discuss it if required.
I told her that it had been made very clear to me today that I should not leave FL home alone for extended periods as he is terminally ill and increasingly unwell.  I am waiting for support from the local hospice, on a day patient basis, to discuss pain relief, as he has refused to consider admission there.
And that pretty much sums up what happened today.

We were at the hospital at 10.30, having overslept  til 8am, after a pain-filled night.  I then had the dog to walk before we set off.  There were several floods to drive through on the way.
When we arrived (walking very very slowly from the front door) I told the receptionist he might need another blood test, as it had not been done since Thursday.  And then we waited.

At 11.45, a nurse appeared and woke him up - she was from "upstairs" where they had been waiting all morning to give him a blood transfusion, but they couldn't go ahead without another blood test today and it was now too late for that to be done.  I knew nothing about "upstairs" as we had been told to come to the clinic as usual.  The nurse went off to find out what to do next.

At noon, the Consultant came to fetch him and we each had to take an arm to help FL along the corridor at a snail's pace.

She asked how he had been since leaving hospital and I told her the highlights.  She tried to engage him, but even once his hearing aid was in, he was struggling to keep up with the conversation.  I explained that he was asleep for about 22 out of every 24 hours and that I had even tried withholding top-up painkillers in an attempt to keep him awake long enough to take his pills and eat breakfast - he hasn't eaten a proper meal for days.  He can't bend his feet to get his trousers off and on.  He can no longer stand upright.  He can only walk with the support of my arm / the wall. 

The Consultant explained that she has stopped monitoring his myeloma because it is no longer relevant.  The only thing they can really offer is pain relief, and when the myeloma begins to upset his kidneys it will have to be something other than morphine.  He may find blood transfusions helpful in future, but his haemoglobin is at an acceptable level without one this week. (Phew!)

She said to him that she needed to discuss with us whether home is the right place for him now... 

He heard that alright and was very abrupt with her.  He said he didn't want to go to the hospice. She asked why not.  He said it was somewhere that people went and didn't come out again.  She smiled and said that this was not the function of the place:  it was somewhere that people who are already terminally ill go to be cared for in an appropriate way, where people understand their needs and are professional palliative carers.  "So are you telling me that I am in that state?"
Um.... yes.
He was visibly shocked. 
I thought he understood.  I really did.

She asked me what my situation is as regards work and I explained that I was due to talk to The Boss tomorrow.  She proposed getting the MacMillan nurse to investigate outpatient support from the hospice, and to involve the GP.  I explained that the GP had not followed through with his promise of support once FL came home from hospital and had not returned phone calls.  The holiday period was obviously a factor in this, but nevertheless...

I also told her that Social Services has offered an alarm pendant and "possibly" help with a wash once a week. She was surprised that this was all that had been suggested.  She asked if we had been offered a wheelchair so he could get out and about?  No.  

FL bristled at the idea of a wheelchair and said he was disappointed that nobody had suggested a physiotherapist to help him get his strength back.
There was a pause.
The Consultant very kindly explained that his muscles are wasting due to the cancer, that this is not reversible and there is nothing to be gained by tiring himself further.

It was clear that FL was upset by the conversation, so we took him back to the waiting room and then went to find the MacMillan nurse.  The nurse has undertaken to speed up a hospice outpatient appointment on the back of a referral from the Consultant (to be made today), liaise with the GP, and investigate whether the local hospital could offer anything along the same lines as the hospice, if only to let me get to work / some respite for a few hours a week.  We agreed I would report back once I had been able to talk to The Boss.

So there we have it.

We go back to see the Consultant next Tuesday, by which time she hopes that we will have a proper support network in place, with the help of MacMillan.

You are going to ask me how I am feeling?

A bit tearful, but in some ways relieved that it has been properly spelled out that this is IT.  Nobody can tell us how long it will take, but he is dying.  Deep breath.

How is FL feeling?

He has been asleep since we got home.  And that is the problem at the heart of the situation right now.  He is not really "present" any longer.  If I was his daughter and not his wife, perhaps I could cheerily deliver him to the nearest care facility, whether he wanted it or not, and carry on with my life.  But it's not like that.  He is still my First Love.  We have history. He is The One.  So I have to knuckle down and do the best I can for him in his final days / weeks / months.  And he is still a proud man - he is having no truck with wheelchairs or walking sticks or elevated plastic toilet seats or being helped to wash.  He would just rather not.  Which is only fine up to a point.  Sometimes I have to just make the decision and follow it through, for both of our sakes.

This is a blog post that I believe needs to be written because there are other carers out there with as little idea as me of what it is actually means to care for their dying husband.  Nobody tells you.  The only information on "end stage myeloma" I can find from UK-based health websites just tries to tell me that everything will be alright:  there are support networks and people who care and they will take over and you will not have to worry. 
Um no... not exactly.

Let me tell you now:  it is pretty much like having a new born baby but in reverse:  no sleep unless the child sleeps, feeding, toileting, washing, and never leaving the infant unattended.   And however much you love that child, it is hard work and it is exhausting.  And unlike having a baby, which grows up and becomes more able to do things for itself, the more time goes on the less your husband will be able to do for himself.  Your life will be consumed by caring for the other person, with no possibility of a positive outcome.

The only possible end to this situation is The End.

And that is why I write this down.  And why I indulge myself in crafty pursuits.  And why I make lists of books I want to read and why I buy myself a new raincoat and wellies. 

I am shoring myself up against the incoming storm that WILL wipe away the life we have built together.

And if you don't want to read about that, please just stay away from this little space of mine. 
It's for the best. 
Thank you.
Roo



141 comments:

threadtension said...

As a long time reader but rare commentor on this blog, I can only chime in to say that I wish you peace and strength during this difficult time.

Robynn Weldon said...


Oh, Ruth. What an impossible situation. Thank you for writing about it so clearly; I wish we could send something more useful than just good wishes.

from103 said...

Sending you hugs and thoughts. I really hope that there is some form of hospice at home service for FL. Thinking of you

Alex Kiernan said...

Keep writing, we will keep reading. It's a valuable outlet for you and I know there are lots of us wondering how you and FL are and sending love your way.

Lilbitbrit said...

In critical stressful situations you think that you know the type of support that will be extended to you and has been promised, and you lean on that in your mind and expectation. However the reality when in that critical situation is so different to how you envisioned it, that, that in itself becomes a total let down and one has to cobble together a working programme. So just to say my thoughts a with you and FL.

twistle said...

I'm another one of the regular readers but only occasional commenters. I'm so sorry that your beloved FL is being stolen from you by a disease that you can no longer fight - I have been given a gift in life in that all the people who have left me, have done so very quickly, either acute disease, or accident. and your description of the process of caring for someone who is not given that dignity at the end is heartrending, and I wish you strength and fortitude to be there for FL to the end. Any place you can find that strength and comfort sounds like a great idea to me!

Melissa said...

Oh, Roo, I was teary just reading this. It is brave of you to write, and write of this so beautifully. No one wants to really write of 'the end' and what it takes. I had a friend whose husband passed away from cancer and she didn't/couldn't talk about it. Even almost two years on. I hope your words will help others.

It's interesting to read about FL's shock at the "diagnosis". I had a similar situation with a friend who's had a disease for a number of years and who was still thinking she would go back to work one day. Perhaps we all try to think positive? I don't know.

Sending you hugs. It's good you have your crafts, and your dog near by too.

Liz Harris said...

I rarely comment but I check in every day now to make sure you are ok. Best wishes Roo. One day at a time x

Carol said...

I can only echo what others have said. Keep writing and know that you are being heard. X

crazyestonian said...

I have been a reader and not commenter. Wishing you strength! All I can really say is one day, one hour at the time. And keep knitting, it helps a tiny bit :)

Vivienne Macphail said...

I'm so very sorry that you and your darling FL have to go through all this. All I can tell you is that there is some comfort to be had from knowing that you have done every thing possible to ease the passing of a loved one. And however distressing it is a privilege to be there for them at the end. Keep writing, Roobedoo, and be strong.

Sarah said...

FL is a lucky man. It takes a special person to care for their dying spouse and you are one amazing lady. I know that you will not think that what you are doing is worth praise as you are doing only what you expect of yourself, but you do deserve to be praised for your strength, your love, and your devotion to FL and your marriage.

My thoughts and prayers are with you and FL during this time.

Keep writing. We will keep reading.

wendy said...

I hope your employer comes through for you and allows you to do what you need to do, in a way that's best for you. My thoughts are with you.

Wakeymakes said...

I wish I lived closer that I could come over and hug you both. Our words are just that but know you are not alone. Please keep writing and crafting. Virtual hugs K xXx

Sadie said...
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Sadie said...
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Sadie said...

Oh, Roo. I am in tears reading this, and wish that there was something more I could do than send you both all my love and support from far away, but I'm doing that, for what it's worth. Take care xxx

(Also, apologies for multiple postings and deletings - Blogger is playing silly buggers!)

Charlotte said...

We're all out here keeping vigil with you from afar -- I lost someone very early in my blogging career, and it did help, knowing that there were readers who wanted to know how I was, who held me in their hearts during that time. So, I hope it helps to know we're all out here -- tiny points of light across the interwebs, wishing we were physically close enough to bring soup and keep you company as you go down this hard road.

Sian Sanford said...

I can only say that I read everything you write, I hope that you get some support, I think about you both a lot .

Brenda said...

I don't comment much, but I regularly read your blog. Last summer we had a family member in Hospice and I didn't think they were particularly helpful aside from providing pain relief. I hope you get the help you need. I am glad to hear about the support from the MacMillan nurse and suggest you use that organization when you have questions about how things "should be". It's tough to go through the end of life process. My thoughts are with you.

Jodie said...

I've been checking in each day at lunch (in Alberta) to see how you are doing. I'm so sorry to read this. But as I am far away, if all I can do is read and bear witness to your struggles and amazing strength then that is what I will do. Keep writing and crafting and planning because now it is whatever gets you through. I hope that you get supports in place that FL will live with soon. I can't imagine the two steps forward, three backwards routine that you are doing right now.

Miss Norm said...

xxxxx

ambermog said...

Keep writing, it's a way that we your online friends can offer support and love and vibes your way. He is your FL and always will be and you feel all the pain and the hurt with him and for him Ruth so it makes it much more stressful in some ways for yourself. I too have a man who thinks that Macmillan isn't for him as he isn't ready to be nursed. I've explained that I too need Macmillan to keep me sane and give me a neutral person to tell my fears to. Love and vibes to you both xx

Amphibiaknitter said...

Hugs to you, Roo. I'm so sorry for your impending loss and for the loss of the life you have and the time you have with FL. Dealing with dying is so much more difficult than dealing with death. Dying is the long drawn out process of mourning. Take care of yourself. Remember to eat. Tell FL how much you love him and how much he means to you. Allow yourself to grieve. Good luck with the work conversation. Do what you need to do.

Your supporters are here in the background rooting for you and feeling useless that there is nothing we can do other than to offer words of comfort and expressions of support. I think of you daily and hope things are okay with you.

Star speckles said...

Oh Roo, I wish there was something we could do. If it helps, I'll keep reading, and I'm thinking of you.

Take care of yourself as best as you can, and treat yourself as much as you can

xx

Carmen Bouchard said...

You are an example of dignity in facing incredible hardship. Holding a virtual hand to you both.
It's all about love.

Gillian Hall said...

This is a very tough place to be and I am so sorry for what you are going through. But I was also grateful to read your unflinching account of what it is really like - not only because of the therapeutic value of writing, but also because it is so valuable for others to know the truth so that it will not come as such a shock. It is, as you have rightly said elsewhere, imperative to look after yourself. I hope you will be adequately supported in order to do this. It was a constant battle for me with social services et al. I am thinking of you both and send my love and prayers.

Dottie Doodle said...

This could happen to any of us. Thank you so very much for sharing your experiences. I often think of you both. Xx

Mary Danielson said...

Thank you so much for writing about this and sharing your world, Roo. I'll be keeping my fingers crossed that you get more support, this week! Sending love and peaceful thoughts, from across the pond.

Jane said...

Ruth, please know that I'm reading every word you write and sending all my love and support. Easier said than done, but don't forget to eat my friend. Thinking of you both every day. Jane xx

Jenni said...

As i am unable to offer any useful advice or help, I will say that if you keep writing we'll keep reading without judgement because if I can do nothing else for you I can support your endless creativity x

Dilly said...

Another regular reader and rare commenter chiming in. I don't have much to add to what people have already said, but I want to say how valuable it is that you can write here completely frankly - both as catharsis for yourself and for everyone out there who reads it. Serious illness and death is something that affects everyone at some point, and it is important that people realise how raw that time is. Not that you need to be thinking about the rest of the world now, but thank you. I wish you much strength in the coming time, and hope you get support for you to look after yourself too.

Knitlass said...

Sorry to hear this news. Glad you are able to share, and like everyone else wishing there was something more concrete I could do than send positive thoughts and prayers in your direction.

Keep on keeping on. I hope that the support networks start to provide a bit more support rather than just promises. And, don't say no to the wheelchair. I worked with someone who nursed his wife through cancer. She didn't want to use a wheelchair, but he she persuaded her, and he said afterwards that he didn't realise how much fun it would be to push her fast and make her hair blow in the wind, and make them both laugh.

Denise said...

We're here.

Rosesred said...

Dear roo,

This is maybe my third comment on your blog in 4 years. As alone as you must feel right know, I hope it's a small comfort to read about other
people who read every word you write.

stripeybea said...

We are all here with you, you are not alone.
Write as you need, say what you feel, we shall understand.
My thoughts are with you both x

Kitkat Krispie said...

Dear Ruth, I so understand where you are at this moment in time. The battling to get the patient to accept care on offer is as exhausting as the caring. If it is any comfort getting engaged with the Hospice will bring you so much ease. Their knowledge, and ability, to manage pain is second to none. Why? Because they deal with it all the time and know how to manage it. I was told that in this day and age no one should be in pain, and that was their goal.
This is a hard journey to make but know that you are not alone. There are so many across the world reaching out to hug you. But, most importantly of all, you are building an excellent support team around you who will guide you along the road. With Macmillan and the Hospice you are in great hands. Keep those knitting needles busy and try to give yourself some respite time.

vanDoor said...

Dear roo, you are strong and brave. I wish I could help you and your FL. The only thing you can do is keep loving him. That's all that really matters

lemon said...

<3

Jenny Larking said...

I hope that writing your thoughts on here helps you in some way. Thinking of you along with all your other supporters.

Fiona said...

Reading yesterday's and today's posts: just night and day. I hope you have people who are there to support you in person. It's so isolating, The blog is a form of therapy for you, an education for us. With warmest wishes.

Bibliophile said...

Thank you for sharing such a difficult subject so bravely and honestly. It is clear how much love you have for FL and that he really is very lucky to have you by his side. I lost my dad a couple of years ago and he was a stubborn old bugger during his last months and would not accept any help, from anyone else, which made it very difficult for our family. I think he just could not accept or process what was happening to him, which seemed totally frustrating at the time, but much more understandable with the benefit of hindsight. I feel such sympathy for you and truly hope you find an acceptable path through all of this, together. You are not alone and you can only do your best, as each day unfolds, with what is presented. I'm sure you will find the strength and support you need.

Louise Perry said...

Thinking of you and FL. Love and best wishes.

annieloveslinen said...

Oh my darling girl, what a position you find yourself in, you're damned if you do and damned if you don't. FL loves you too, I hope that he can accept going to the hospice sooner rather than later for your sake.

Mog said...

Oh Roo, another one feeling totally powerless to lighten this load. I check up on you as soon as i get in each day. Your blog kept me going through difficult times, and I so wish I could do something other than send you love and a big hug.

I hope the powers that be give you the support you deserve in this most difficult of times.

Meanwhile, keep talking here; we aren't going anywhere. In spirit at least there's an army here willing things to ease so you can do what you need to do in your own time.

Much love. X

Linda said...

I had to comment today. Such a heartfelt post. I cared for my mom for two years before she died in her room in my home. She had chronic leukemia and Alzheimer's. I thought I couldn't stand it, not only because it was physically exhausting and emotionally painful, but because I was envisioning it going on for months. With my mom, the stage you're describing now did not last very long. The hospice people explained to me that as death approaches, our loved ones sleep more and more as they are "detaching" from this life as well as refusing to eat. It is so hard. I feel for you and will include you and your FL in my prayers.
Linda Nichols

TempestKnits said...

Ruth, can I tell you something? I shared your Blog with my Father's partner a couple of weeks ago, because this time last year she was in exactly the same place as you are right now. Her name is Rosemary, and we speak every other day on the phone. She has asked every time we speak how you are doing, how is FL? She wishes she could reach out to you, and I said that I would write a wee note to tell you that although she is a complete stranger to you, both of you are very, very much in her thoughts at the moment. We both know this isn't much - God knows how SHE knows this having been where you are and, as she says, living in something of a surreal twilight world where the one you love is slowly, but too quickly, slipping away from you. Rosemary very much had to deal with the same difficulties also in helping my Father realise what now must be faced as gently as possible, and trying to stay strong and deal with a 'system' that just wasn't moving fast enough to allow my Father or her to share the best of the precious time they had left together. She has asked me to say that if you think there is anything she can do (and she means this - whether she be a stranger or no), please just mention and I will pass on her details to you if you would like them. We hope this isn't being too intrusive; but the offer is there only if and when you feel you might like to take it. We really are thinking of you. Please remember to try to take care of yourself too - we are sending you and FL much love.

Sew little time said...

Oh roo my heart is breaking for you. This is so difficult and i am so sorry that the nhs arent coming through when you need them. I hope your boss is suppprtive. Lots of love. X

Lynne said...

Oh! I am sooo ... I could scream. At home, in the states, I worked for a hospice, but it was a homecare hospice. So you called us... or the doctor... and a nurse and social worker would be there in a day to enroll you and set up all the things you needed... special bed delivered usually next day, and one nurse, your nurse... to come and help once a week or even daily as needed, usually just for an hour... but to monitor meds and request changes or do wound care .... and there were nurses available at all hours if an emergency came up... even just to call or to come out, and then homecare aides for a few hours each day... was it perfect, no... and did it mean that the family had a lot on their hands, yes... and in your situation, wow... it is rough, but I really do hope they send in some home health aides or carers... even just to give you a little relief, to know he is cared for. And supplies... we brought all kinds of supplies too. I wish I could wave a magic wand and get you all set up!!!

And yes, you are spot on, no one talks about the actual caregiving aspect... or the dying. But the dying depends so much on each person and which organs are affected etc... it is not easy, and if you do have someone who could at least come and sit with him while you slept... friends or someone... it is hard to ask, I know, but for your own safety and his, it might be a good idea to have someone else with you all. I mean, you both need sleep, but you need to be able to really rest and know someone is watching... and if he did try to get up, then someone would be there.

Giant hugs and prayers... truly, from the bottom of my heart. I too have a One and I met him a long time ago and we just got married this spring, and my heart aches for you... so truly, wishing you the best. He is a lucky man :-)

SΓΈlvi said...

Sending you all of the hugs and all of the love - thinking of you both. Keep on writing, I´ll keep on reading.

Charlotte Tilley said...

Love xxxx

Charlotte Tilley said...

Love xxxx

Twelfthknit said...

I so wish I could say something wonderful to you. I hope that the Maillan nurse will be able to get more support put in place for you both. My brother's wife is terminally ill. He has had caters come in to sit with his wife to let him get out of the house for an hour or two. Would FL agree to that if such a service

Twelfthknit said...

Cut off my post.

As was mentioned above, you need support too so try not to be hard on yourself if you do need to take such decisions that help you both as a whole, even if it means not doing everything FL's way. To look after him you need to look after yourself too. Best wishes

Emma said...

I send to you all enveloping, heartfelt hugs. Not practical, but all I have.
I am so sad that FL is so disconnected, yet, when he heard what the consultant had to say, so shocked. I can only imagine how hard this is for you.
I wish that there was some way that I could support you through this, other than being here and virtually holding your hand.

Susan_in_Peckham said...

I wish I could do or say something to ease your path through these next days and nights. Please know we are all thinking of you and your FL and I hope our thoughts and prayers can be of some comfort. x

Maeve said...

Like everyone else has said keep writing and know we are reading and in our thoughts every day. I hope you find a comfortable situation at home or at a hospice very soon. Stay strong.

Lizzi said...

I am glad you have written this down - it is so hard to put into words how you re feeling/what is happening but you have made a really difficult subject accessible for lots of people - and hopefully it will help you just a little.

Nina Waters said...

I haven't commented before but have been following your blog for some time. I am in rather in awe of your strength and courage in sharing this with so many strangers/friends. I'm so sorry that you have such difficult times now and to come. I only wish that those of us who read your words could help in some tangible way. You and FL are definitely in my thoughts.

crochetyknitter said...

Big ((((hugs)))) and much love to you and FL xx

Miss said...

I'm sorry this is happening to FL and to you, Roo.
Love and prayers for you both x

Kate said...

I rarely comment, but have read and enjoyed your blog for years.

Thank you for your honesty. You are right that no-one tells you the reality of some things. I hope the knitting helps (it's got me through some bad times). I wish there was something I could do to help - other than thinking of you, way down here in New Zealand.

christina neumann said...

All you can do is be there. It is so difficult ,I'm sure. No one tells us how the end of life will be.
Along with all your supporters, I send you the best and loving thoughts i can.

sewstyled said...

All I can say is that I 'm sorry about what an incredibly difficult day you and FL have had on top of all the other difficult day you've had.
You seem so strong and keep writing about your experience as it seems to help you.
I hope the conversation with your boss and HR or whoever gets involved goes well.

Christine Sweeney said...

Hi Ruth - long time reader, first time commenting.
Thinking of you and your FL. Wishing you the best, at what is in reality, the worst of times. FL has just turned another corner. There are more to come. Take care. Keep writing if you can. M-C

Suzie said...

Like so many others, I regularly read your blog and seldom comment. You have an entire community surrounding you and your family supporting you the best way we can. You are not alone and so many of us are sending you hugs. I live in the US, so this is a world wide group sending you prayers, hugs, tears, compassion, and strength. Stay strong, know that you aren't alone.

Suzie

K.Line said...

I'm not staying away. I am very here and willing and happy and grateful to listen and to offer you my support and positive thoughts. Thank you for sharing your experience. It's as important for us as it is for you.

Witchknit said...

Oh My Dear; I am another reader who seldom comments, and I too live in the USA. I find myself checking your blog daily, I guess because I want to be sure that you are OK at this terrible, terrible time. For what it's worth I am in awe of your courage and your honesty. Please keep writing and just do the best you can. It will surely be enough. Many prayers and blessings to you and your FL.

JuliaRu said...

I wish you peace.

Lynn said...

There is so much pain there, for you, for FL, for the future. I wish there was more that I could do besides offer moral support, but it is all I can provide from here in the US. Remember, you have to take care of yourself too, please be gentle and kind to yourself as well as FL. Many prayers for peace and an easing of your way through this.

Rachel said...

Sending you strength and love (from another quiet but loyal longtime reader)

Taran said...

I'm so sorry. He is so lucky to have you there by him. I hope you are able to get more help, and also that you are able to be with him in all the ways that will let you remember, when it is done, all the good things about your time together. Hugs.

tim's wife said...

Again, so very sorry. And how awful that you think there will be services available and doctors who follow through and then don't. I sure hope that you get a better response now from those services. And I wish for you both strength, and peace, and mercy.

Janine said...

No words can express my sorrow , care etc . I cared for my dying father at home for the last 5 weeks of his life with my mother. It was both a special and terrible time. We had support of the palliative care nurses ( eventually ) and occasional GP visit. I think My job as a GP came into play too much - I really should have just been a daughter but I am glad I could also alleviate his distress at times more quickly had we had to wait for the limited meducal resources. In the end though I am glad he died at home with our care. However neither my Mum or I could have done it alone. I hope you can get as much support as you can.

Cherie said...

Roo, I'm reading your writings still, and as everyone has said, want to help in some way - but have to settle with listening. You have courage to write such difficult thoughts and times, I so admire that. We're all thinking of you as you tackle the supposed caregiver helpers, hoping they finally step up to your needs. Blessings to you and FL.

Wendy Rader said...

Roo, another long time reader here. Thank you so much for sharing with us through your blog. Your words reach across time and space to us all. We are all supporting you and FL, sending gentle good thoughts your way.

Kaye from Adelaide said...

i have been following your journey for quite a while but not commenting. My thoughts and prayers are with you.
Kaye from Adelaide

justmejay said...

...I have never commented on your blog before (which I am also sorry for) - but read most if your posts. I am so deeply sorry for what you are both going through - sending love and hugs from Sydney x

rosylea said...

So sorry for you both. No one tells us about this bit of life experience really, and although it makes for sad reading, I am glad you are writing it. Your honest sharing is very greatly appreciated. R

Sabs said...

Roo, I'm sending lots of hugs to you both. You've been on such a difficult journey. There may be more difficult times ahead but remember FL as he was, not as he is. And please make sure you look after yourself too, you need to so that you can carry on. I wish you both a peaceful time ahead xx

sewalign said...

I hope and pray that you will both receive the help and support that you both need at this difficult time. You are an amazing carer and your husband is blessed to have you. My dad spent his last two weeks in a hospice (cancer) and the doctors and nurses made my dad comfortable and they were wonderful.

Karen Venables said...

Another long term reader, rare/never commenter here. I just wanted to add my voice to the chorus of love and support at this very difficult time for you. I hope you can access some meaningful help very soon and I wish you peace in the days and weeks to come. xx

Lily M said...

Oh Ruth. I want to come and give you a big hug and make you unlimited cups of tea. The world is bloody cruel.

Athene said...

I'm sorry that FL is being taken from you, and sorry at the woeful failure of support (always excepting the MacMillan nurse). However I am glad that you and FL have such a strong bond of love and glad that you're both able to acknowledge where you are, hard as it is for FL to accept. These are precious days but this is a hard time for you - look after yourself, and remember that whatever you do, it's the right thing. Much love.

Laura said...

My dear Roo, you already know this, but writing this down is IMPORTANT. Not just for you, as you say, but because these are things we don't talk about. Trying to get through stuff like this is hard enough without the feeling that everyone else knows what they're doing and it's only you that doesn't. By putting it down, hopefully it's helping you, but it WILL be helping someone else as well, I guarantee it.

Much love to you, as always, and I hope the meeting with The Boss goes well. xxx

deborah said...

I send you love and just want you to know I am thinking of you xxx

Sarahel said...

Oh Roo. My heart goes out to you. Some of what you describe is so familiar to me from caring for an increasingly frail elderly husband. Mine has been losing mobility slowly but steadily over the last couple of years and so has equally slowly been persuaded to adjust to aids (sticks, the use of a wheelchair to move around the acres of hospital corridors, a raised toilet, & most recently a rollator at home) to permit the maintenance of a greater degree of independance - but I totally understand that making that adjustment quickly is much harder. I'm interested that you compare the caring required to that of caring for an infant. I'm not a mother but have regularly thought that my responsibilities are not dissimilar to that of parent of a young child. And you're right, that responsibility includes making decisions about what is in the best interest of both of you.
I so hope that your employer and all the relevant health & social care agencies come through for you this week. OXOXO

The Coffee Lady said...

I am so sad and frustrated reading this. I work for a cancer support charity but we are miles away from you. I want to drive up and shove you into my car.

Jane Neave said...

I am so sorry this particular point in your lives is not going as it should be. Someone's not doing their job properly you should be receiving so much help and support and i am so sorry this is not the case. Take strength from us all reading your blog and know we are giving you support and love. Take care. Thinking of you with love xx

sulkycat said...

Sometimes there simply are not the right words. Love that good man with everything you have, but take care of YOU too.
Thinking of you both- and Hero of the BionicBladder.

Isabella said...

Some advice.. sort things out now, while you've still got some spare energy and before you need them. Hospice out care, hospice admission ready and waiting when he needs it (and he will), drug supplies etc. Don't wait for his expression permission before you set things up, if he's sleeping 22 hours a day on morphine he's not at top thinking ability anyway which is why he's not taken on board the terminal diagnosis. There's only one of you, you're not physically up to the process of lifting him on and off a bed onto a toilet or off the floor if he falls, YOU need the extra assistance as much as him. DDon't try and argue the finer points with him, you've jus got to do it. The time may well come where you say that he's going to the hospice because you simply can't cope alone any more physically. This isn't a lack of love, quite the opposite in fact.

(((hugs))). Been there too. It's not easy. You can only do the best you can.

Violet said...

I'm so sorry for you both. One thing that it might help you to know (don't know if you are aware of this or not) is that in the end stages of cancer it isn't always a steady decline. In the final two weeks of my mother's life, she would sleep all day for a few days, and then she'd have an amazing burst of energy where she was hungry and coherent and wanted to go for walks (even though she had lost the ability to do so) and spoke about leaving the hospice. It was like having her back again, and the first time it happened, I thought that perhaps the doctors were wrong about how gravely ill she was. Then she'd go back to the sleepy, only half present state. This happened a few times before the final decline. It's a bit weird to write that, but I never read anywhere about that happening at the end of life and I would have like to have known.

The other thing is, if you do decide to admit FL to hospice, it won't necessarily mean leaving him there. Our local hospice had guest bedrooms for family members and there were no visiting hours - you could be with him constantly, if that's what you wanted to do. In the final week of my mother's life, a member of our family was with her 24/7 - the hospice fed us and provided us with somewhere to sleep. The hospice was also significantly more comfortable and pleasant that our local hospital ward, so my mum didn't hate being there as much as she had hated the cancer ward.

colleen said...

I read your post yesterday with much sadness and sympathy, but wanted to think about how best to support you. Isabella has covered much of what I would have to say, from experience with elderly relatives. My unmarried 90 year-old aunt with terminal stomach cancer wanted to stay home. We were provided with a hospital bed to help with lifting and comfort. She was not happy about this but we could not manage toileting and soiling without it. Our wonderful district nurse visited and organised help with washing: my aunt did not like this either, but my mum, her main carer, was at the end of her tether, very stressed and shouty. This relieved the burden considerably. There is a balance to be struck between pain relief and clarity - my aunt did not take morphine and had considerable pain. Do have that conversation with your sweetheart so he has as much autonomy as possible. Do press for all the help you can get. Do ask for help from your family. Do speak to your practitioner privately about timescales- they might shield you otherwise. Do look at hospices if you have a chance. (See Marion Coutts memoir "The Iceberg"). Tell FL how much you love him while you can. In my experience you will know when your sweetheart is close to The End. Prepare to make that as good a memory as it can be knowing that you did your very best - as indeed you are doing.

Diana Burrell said...

I am so so sorry for everything you and FL are going through with this damned multiple myeloma. You both have had such a difficult journey, and you're absolutely right -- no one really talks about how rough it is for the caregiver, and I can't imagine how hard it is to watch one's beloved go through the transformation as you've so eloquently described. My 73-year-old mother was diagnosed with multiple myeloma several years ago, plus I'm a knitter, thus why I found your blog. Many of the things you've written about with FL's treatment have helped me in my care for her -- for example, when she started going manic. I suspected immediately she was getting some dexy, which the doctor confirmed. He was able to cut the dose down so she wasn't so hyper. I will let her know how "my Scottish friends" are doing, and we'll both keep you and FL close to our hearts these coming days. Best wishes and [[[hugs]]] di

Jen Arnall-Culliford said...

Not much I can do beyond sending best wishes. I helped to care for my father with terminal cancer, and it was hard. xx

greenmtngirl said...

I am so so sorry. I have watched my aunt, mother, and other relatives go through the deaths of husbands and other loved ones. I know it's so difficult. If it's good for you, I'm glad that you are writing about it. I am too far away to help, and a stranger really, but I've been reading your blog for years and it's a blessing for us to be able to accompany you in this way, by reading, if you want us there. Sending comfort and strength. May it be well.

MaryinTN said...

Roo- you and FL are very much on my mind and in my heart today. I wish I could do more than pray and send hugs. When my uncle was close to the end due to colon cancer he had several periods of rallying. He used those to try to get things in order but they were increasingly shorter duration. He wanted to pass at home and had to recover enough to be discharged to hospice. Like others have said: please use this time to not only love FL but also get the financial and other obligations squared away. Work on his book together. He will sleep more and more. Take care of yourself too. Home care aides are miracles. You need to be in condition to make decisions and for that you need some downtime yourself. It is not surprising FL did not understand. There are various stages of denial. I am so sorry this damn disease has invaded your lives and your happiness. Wishing you strength and peace.

Kaeman said...

Wishing you the strength to carry on, the calm to make decisions and all the help you need in this time of pain and sadness. We, your virtual friends, are here and here we will stay. Laura xo

Alimak said...

Wishing you strength and peace, and some moments of happiness in this extremely difficult time. Thank you so much for sharing what is happening and how you are feeling. As you said, there is so little help and guidance in these situations beyond the kind of disembodied reassurance on health care leaflets about support that you've cited... But your current situation is very real and, in fact, though we have so little guidance, so many people find themselves in this situation with a loved one, be it their spouse, parent, or close friend. And as you said, some might find a "practical arrangement" for the person who needs end-of-life care, and seemingly move on emotionally, but, really, many people not only struggle to figure out what would help in a practical sense but also to figure out how they can be there for the other person in a loving way... and not get eaten by their own suffering. Therefore I'm glad to hear about your new coat and rain boots as small elements of self-care, and always very, very grateful for your openness about what is going on. I do hope you have some friends either close or who could visit to help a bit (if you would be comfortable with that, of course). Sending you my best wishes for you and your FL.

Jennifer Hill said...

Dear Roo, we know that's why you craft and do those other things. I read all you write and its a privilege. Though I can only listen I do so with heartfelt warmth and the greatest sympathy. I truly feel for both of you. Perhaps FL had forgotten his prognosis for psychological reasons. I agree with others who say that there's a balance between what FL wants and what he (and you) needs. Like, as you say, a parent and child. Perhaps if a wheelchair, toilet high seat etc were just there he would accept their use and the comfort they may afford without having to cross the psychological barrier of explicitly agreeing to them. Perhaps also the hospice, if you could be there too. I do appreciate how damn HARD, agonising and draining this must be for you in every possible way. If there's anything AT ALL I can do, whether listening or practical - I am in the UK - please email me (jen.id144@gmail.com) without hesitation. Warmest wishes, Jen.

Paula K said...

I am in tears reading this. I can't imagine what you are going through, but want to thank you for writing it down for the rest of us to know. We (as a society) want to sweep death under the rug, as if doing so will make it go away. It is a part of life. I know this is one of 100+ comments, but please know you are not alone. A dear friend of mine turned me onto this quote, and I have found comfort in it in the past: "Don't cry because it's over - smile because it happened..." - Dr. Seuss. May you smile because you have had this time with FL. Much love to you and FL. -Paula

andsewtoknit said...

Sending you virtual hugs and I hope you get all the help you need, take care of yourself X

Lucy said...

We are not leaving you, Roo. You are not alone xxx

Nick UK said...

Do what you need to, to get through this, it is a finite period of time and you are giving your love the great gift of dying on his own terms and not at the convenience of strangers.
Make a fuss, get the support you can and if writing it out helps in any way then get writing.
much cyber support Nick

Mairead Hardy said...

What can I add? Just lots of virtual hugs, and positive vibes to help give you the strength you need during this time.

pennylibrarian said...

I'm struck by the many parallels between birth and death:
Mountains of stuff that can be read, none of which is much use because in the end you mostly have to muddle through as events overtake you.
Both events are unpredictable, painful and messy. Many people want to be at home few people seem to manage it.
As the previous commenter has said, enabling FL to be at home where he wishes to be at this time is a gift. And it's an immensely generous gift.
I hope that some pucker, practical support finds its way to you. xx

Sue said...

I rarely comment on blogs, but check on yours daily at the moment. I wish you all the strength you need to get through this difficult time. Xx

Sue said...

I rarely comment on blogs, but check on yours daily at the moment. I wish you all the strength you need to get through this difficult time. Xx

Lorenza de Medici said...

Thank you for writing this down and putting it out there. Such important subjects that you've written about.

It seems to me that you are finding ways to keep going (the crafts, the books, etc) in order to be the person you want to be for your FL, and to be the one he needs right now. I think that to keep giving, and to keep going, we all need ways - however small and momentary and perhaps "lightweight" to others - that refresh us and are right for us: and you're the one who gets to decide what's right for you.

Sending you warm thoughts.

Roobeedoo said...

You have painted such a lovely image there 😊 thanks for that

Roobeedoo said...

Thank you for telling me your story. I would like to think this is not going to be a prolonged struggle.

heatherybean said...

I have read and enjoyed your blog for a long time but I am not sure that I've ever commented.

You are doing so well, even if it sometimes feels like a struggle. To feel fear and to keep on going is true courage and you are showing that so much right now.

Sending you both thoughts of peace, and please know that there is a whole world out here rooting for you.

Heather x

Roobeedoo said...

Please let Rosemary know that I greatly appreciate her kindness in thinking of us. I am so touched by the concern expressed by people I don't even know. Say hello to her from me.

Roobeedoo said...

I keep thinking I must have misunderstood what is available because I truly thought it was what you describe. Maybe I will only be able to access such a service when it comes to a crisis. I am hoping that the MacMillan nurse will provide the missing link before we reach that point. Thanks for your kind words.

Roobeedoo said...

Thanks India. I am hoping the MacMillan nurse will be the link to such assistance.

Roobeedoo said...

Thanks Denise 😊

Roobeedoo said...

Your experience confirms the need for me to ensure
help is put in place before I need it. There is only me and him and the dog can't do much!Thank you 😊

Roobeedoo said...

As FL said last night, it all seems to have come so fast despite being long anticipated. I don't think anyone is ready to be told the end is near. Thanks for your kind words. I hope you have many more happy years ☺

Roobeedoo said...

Ooh where shall we go?! It made me laugh to think I could stage an escape from it all!

Roobeedoo said...

Sssh! You are giving that stinky hound an inflated opinion of himself! πŸ˜‰ thank you 😊

Roobeedoo said...

Advice accepted. You are absolutely right. Thank you for reminding me that I need to take control of the situation before it gets out of control.

Roobeedoo said...

This is so important to know. We had a long and lucid conversation last night that was almost like normal. But tonight he is fast asleep and was unable to eat dinner.One day at a time.

Roobeedoo said...

Thank you so much for such down to earth practicalities. I talked to FL last night about the physical aspects of care and he realised that he didn't want to put me through that on my own. I think he will consider the hospice now. We are waiting to hear about a visit there.

Roobeedoo said...

I am so pleased that I have been able to help someone else by writing this blog.Good luck to you and your mum 😊

Roobeedoo said...

Thank you 😊 I am not sure that home care aides exist here but I will certainly ask MacMillan about the possibility.

Roobeedoo said...

Thank you for reaching out a friendly hand 😊

Roobeedoo said...

Thank you for a Dr Seuss quote! That is lovely 😊

Roobeedoo said...

It may not be a gift I am able to grant him but I have to do what I can. Thank you 😊

Pam Bochel said...

Dear Roo - I too check your blog daily, but rarely comment. I hope your work and the care/support issues are sorted very quickly so that you can make the most of the precious time that is left with FL. You are both in my thoughts. X

Chelle said...

Somethings can only be carried with us as there is no fix. And in these times we rely on the wonderful memories and the love of others to carry us through. Thinking of you with empathy.

Debi said...

Oh Roo, I am so sorry. I'm sending lots of thoughts for comfort and strength! We love you! xxx

Mela R. said...

I'm sorry for all that you are dealing with. I wish you lots of strength and peace with what lies ahead. I really hope some support comes your way. Sending you a massive hug.

zangmo said...

Dearest Roo, I don't think there is anything much more that I can add to all the comments above from a practical point of view. I echo what someone said above about the lucid moments in the final weeks. The week prior to my Dad passing he had moments where he was very alert. I think that he had finally accepted that this was it and he wanted to get certain things in order. That week I spent a lot of time with him....doing spreadsheets and helping with paperwork. He kept me up all hours and we had such a laugh and lots of tears. I would not trade that week for anything. It was very special. Like you I could not find much information on what the final moments would be but I did meet a very special lady (fellow knitter)who told me what could happen and what I should do. Anyhoo I know you have never met me but I can help with anything at weekends or evenings. email me sus1200@btopenworld.com if there is anything I can do. Big hugs Sus X

Lorna A said...

I keep seeing adverts for Marie Curie nurses, ask if they are available in your area. X

Eirini said...

Hi there, your post touched my heart, because my husband died 6 months ago from cancer and it was our decision for him to remain at home till the end, so I know very well what are you talking about. Although this decision put a considerable amount of stress on me, as his prime care giver, my husband was tremendously grateful for this arrangement, so now I know it was worth more than I can describe and one of the few things that make me feel good afterwards. Of course this decision wouldn't be sustainable without the support of our devoted GP and a qualified nurse, both of whom visited on a daily basis for the last days in order to regulate the pain killers, fluids intake etc. The turning point in his situation was when he stopped being able to be fed orally and he went on parenteral nutrition (intravenus). This was when I stopped going to work. At this point he was so weak he couldn't walk, so we had to move him around the house in a wheelchair, but most of the time he was bedridden. This last stage lasted 15 days. Various friends helped with other things, from bringing the necessary medication to cooking for me or simply dropping by to keep us company. It was hard, but help flowed towards us from unexpectable places and in unexpected ways, so I felt that I was not alone in this, and this gave me a lot of endurance and strength. I truly hope that you will find ways to make this transition serene and dignified for you and for him.

Lorna A said...

I keep seeing adverts for Marie Curie nurses, ask if they are available in your area. X

Sharon said...

I wish you could know how often I have thought about you and FL and sent mental support and prayers across my continent and on across the Atlantic to you. I'm sure there are many, many others like me here in the States who follow you. I have checked your blog every day during this past Christmas season, willing you strength. I was with my mother through her end-of-life process, and like you, was surprised to discover that I had to figure it all out from scratch step by step (overseeing care, advocating for her when necessary which was frequently). No one teaches you/prepares you for that, and it made me shudder to think what it must be like for the acutely ill who have no family or friend to step into that role. You assume (until experience teaches you otherwise) that medical caregivers will oversee and direct things, but it just isn't so. You are remarkable. Everyone would be blessed to have a Roo in their hour of need.

RooKnits said...

Thinking of you and FL. I hope you get the support you need. Look after yourself. Sending much love. x

Catherine Cottingham said...

Thank you for blogging and writing these things down. They are so important. Thinking of you both.

liza jane said...

Big, big hugs to you. You are most definitley in my thoughts.

velosewer said...

Go with your plan because he is the One.
Thinking of you both and do what you can.