Thursday, January 14, 2016

Welcomed in the Hospice


Today was one of the hardest days so far.

I felt like I was driving my love to the scene of his execution.  He was very reluctant to leave the house and could not bear to acknowledge the dog as he went out of the door.  I thought he would regret it if he didn’t, so prompted him:  "Ha!  Goodbye dog!” he said gruffly.  And as we drove out of the farm road I caught him taking in the view of Bennachie, sidelong, in case I noticed.  In case I thought he was looking at it for the last time.
Which he probably was.

I don’t think I have ever driven with such care and attention.  The roads were icy, on top of recent flood water, but we made it safely.  We got the last space in the tiny car park.  The receptionist showed us to his room:  he has his own room there, with a lovely view of the garden.

We waited almost an hour before a nurse came to talk through the admission form.  In that time, he tried to say the things he needed to say to me, but was stumbling over the words.  “Don’t worry,”  I said “There’s no rush!”  “But I’m on my way out!”  he said.  “Like I said – there’s no rush... you’ve got all day!”  I replied, which got a laugh out of him.

The admission form was the usual stuff about the size of our home and whether there were stairs, and his recent medical history.  And somewhere in the middle of it, I started to panic, in case we were about to be told he was a fraud and how dare we take up a precious space in the hospice, when other people were in greater need!  But it wasn’t long before he started to fall asleep halfway through a sentence, and for obvious waves of pain to pass across his face.  The nurse had to leave twice to administer medication to other patients, and on her second return we agreed that I should answer the remaining questions, to let him rest.

We were given a leaflet setting out the facilities available to him in the hospice.  He smiled to hear that ice cream is available in place of standard meals, if that is all that he can bear to eat.  This had already become my substitute offering when the mere thought of healthy eating made him wince!  And he brightened up quite a bit when he heard that there is a writer in residence, whose sole function is to help patients get their words onto paper.  I persuaded him to bring his book project with him and now he will have the chance to share it with a "professional".  Truly fantastic news!  The burden is no longer mine alone :)

His lunch came at noon, and I was asked to go to the visitors’ room where there was tea and coffee available.  When I got back, he was asleep with his head on the table.  He had eaten only a little, but he had tried.  I carried on with my knitting.

At 2pm, the doctor arrived with another long list of questions.  But she had lots of good answers too:  ideas to adjust his pain medication, to give it as a liquid rather than a pill;  a nebuliser to help clear his chest;  a drip to rehydrate him, now that swallowing is painful.  She really listened to him, giving plenty of time for him to try to explain exactly where the pain was situated, to talk about how hard it is to eat and drink, now that everything tastes like medicine.  And this is the crucial difference between hospital and a hospice:  life is conducted at an entirely different pace.  FL is at last being given the time he needs to try to explain how he is feeling, without people snatching the words out of his mouth and forming their own conclusions.

But it exhausts him to think about his body and how he feels.  At one point he asked to be excused to go to the toilet.  I helped him through, and returned to talk to the doctor.  I checked on him at ten minute intervals, and I am pretty sure he was asleep every time I went through.  It was round about then that I realised that the young doctor had tears in her eyes.  She said it was lovely how calm and patient I am with him.  Oh me oh my, that's when I lost my composure.  Far from them thinking I have been over-reacting to his condition, they totally understand and agree with me:  FL is in a really bad way and is finally in the right place to get the personalised care he needs and deserves.  And I can't bear for that to be true.

Talking to the doctor about how things have been, she told me that his latest blood tests show that his kidney function is deteriorating.  This is the critical factor in the prognosis for a patient with Multiple Myeloma.  She said that he is very frail now... and asked me then if we had thought about whether or not he would wish to be resuscitated in the event that his heart stopped.  And although I know it is a question that has to be asked, it was suddenly absolutely clear to me that he won’t be coming home again.

She was incredibly kind and compassionate.  Everyone we met today was the same.


I stayed until 3.30, when I left to beat the rush hour and to see to the dog.  Hero had been through the recycling bin again and there was a pile of shredded paper on the floor.  He was very glad to see me, and relieved that I wasn’t mad at him.  But he was looking everywhere for his master.  Poor dog.

101 comments:

Twelfthknit said...

Oh Ruth. You are the best of wives and partners. So glad you now have help. Best wishes

Knitlass said...

Tears in my eyes too, but happy to hear your FL is safe and cared for. My heart goes out to you both. And Hero.

Carol said...

Words are inadequate. Thinking of you both.

Mags said...

How very brave you both are. So relieved that FL will get the best of care and that you can be his precious, loving wife. Wishing you strength for what lies ahead. You have loads of friends on here sending you lots of love. You are in my thoughts. xx

thornberry said...

Tears in my eyes as well. How wonderful that you finally have the support and care that you both need. And how sad for you both too.

Charlotte Tilley said...

Love xxxx

Charlotte Tilley said...

Love xxxx

Melissa said...

I think we all had tears in our eyes and there's a sadness right here (in my center). I am glad there is the 'right' support finally. I can't imagine what this must be like. Sending you lots of hugs and strength when you need it most.

Wakeymakes said...

Oh my. What a week. If the shoe was on the other foot we could only bless FL for looking after you. Hopefully you will both rest well tonight K xXx

vanDoor said...

Years in my eyes as well.
Glad your FL is taken care of properly now. Lots of love for you roo, keep strong

vanDoor said...

That should be tears... Weird auto-correct

Heather said...

I hope you get some sleep, strength to you, Pleased FL is being listened to and cared for as he needs.

RooKnits said...

Roo, You and FL have been in my thoughts all day and I am in tears reading, so I can not begin to imagine how you are feeling. I am so glad that FL is getting the care he needs and deserves. Sending a big hug and much love.

Sewing as Therapy said...

The people in the Hospice sound like what you need right now, even though this is so heartbreaking. Here's hoping that the remaining time allows the two of you to spend as much precious time together just enjoying each other as possible. Hugs, and wishing you strength and courage for the hard decisions and conversations ahead. May the writing go well for FL too!

Charlotte said...

Oh floods of tears for you both, but such relief. He's being looked after and you can breathe a little again. (And poor dog. My brother's dog was with me when he died, and for the rest of his long life thought every diesel pickup truck was Patrick coming back.)
Get some rest, and I'm so glad you two will get to spend what time is left without worrying so much.

Sew little time said...

So glad you and fl are finally getting the help you both so deserve. Thinkong of you both. X

Sew little time said...

So glad you and fl are finally getting the help you both so deserve. Thinkong of you both. X

K.Line said...

Lord - you have the soul of a journalist. You are recounting this with such poignancy. I am confident, that in years, you will be grateful to have taken the time (and tremendous effort) to chronicle this experience and your strong feelings about it. Right now, of course, I don't know how you're putting one foot in front of the other but you are managing as well as any human could. This is hardcore horrible, Roo. It's entirely right that you should see it that way and feel that way (or all the other ways you may see it and feel it in the course of a day). I am so grateful though that you have support and that he has the medical care and personal experience that he should have at this time. My prayers are all yours.

Lizzi said...

He is so lucky to be loved by you.

Mad about Craft said...

You and FL are going through this terrible ordeal and I'm crying buckets - for you, for me, my Dad & my Mum.

My Dad had to go into a care home Dec '14 after a long battle with heart disease became to much to bear at home. Mum & I have gone trough those emotions that you have been through in recent weeks. Dad settled well and even improved for a while which was good to see.

FL will be really well looked after and his symptom management should be much improved and hopefully you should get the good bits of him back!

Look after yourself and hero!

Jenny Larking said...

Wanted to say exactly what K.Line said. Your writing is so eloquent and reading it we feel as though we are there with you. We all are, in spirit. I have had quite a bit of experience with my local hospice and it is truly a happy and peaceful place.

Jane Neave said...

Sending you love and strength. Hope you manage to get some sleep tonight xxx

Lorna A said...

Such a difficult day for you all. I don't have anything useful to say other than I admire you immensely. X

Star speckles said...

I have tears in my eyes and lump in my chest reading this, I can't imagine what you are going through. I'm so glad you have some support and such caring people. I think hospices are run by angels, I hope they are able to offer FL some comfort and ease his pain (and yours).

I wish I could do more, but my thoughts and prayers are with you. Your experience and honesty at this time is so brave, and I'm sure it offers comfort and hope to others who are going through a similar time.

xx

Siga said...

I have been a long time reader of your blog, but do not even know if I have ever commented before...
I do not even know what to say. It's horrible that he's away even if he's taken such good care of now. I feel your pain for being alone.
I can only send you hugs and my very best wishes your way...

Siga said...

I have been a long time reader of your blog, but do not even know if I have ever commented before...
I do not even know what to say. It's horrible that he's away even if he's taken such good care of now. I feel your pain for being alone.
I can only send you hugs and my very best wishes your way...

HappyAcademicRunner said...

I am so glad that you and FL are getting the right support now. Much love. Xx

HappyAcademicRunner said...

I am so glad that you and FL are getting the right support now. Much love. Xx

MaryinTN said...

Roo, I am in tears for FL, you and Hero. Thankfully FL is where he can get the care he needs but it is so very hard and sad. Is it possible that Hero be brought to visit and comfort? My heart is breaking for you all.

Alison said...

SO glad you are both getting the care and support you need.

Saffi said...

I'm so glad that you're both getting such wonderful support, but so sorry that you're going through an experience that makes the support necessary. Thinking of you both.

Maureen said...

I hope you can squeeze every drop of love out of each other and more hugs than you ever thought possible xx

Saffi said...

I'm so glad that you're both getting such wonderful support, but so sorry that you're going through an experience that makes the support necessary. Thinking of you both.

Gillian Hall said...

So glad, Roo, to hear that the hospice staff are loving and caring. Just what FL needs and deserves. My father died recently in hospital, and they did their best, but it was not like a hospice. I, too. have been crying with you. Thank you for sharing it and send you heaps of love and support.

happymousefairy said...

Roo, I've been thinking of you both for some time.
I now want to add my small voice to the many others to show my support, love and pain for you.
It is good to hear that the hospice is so in tune with FL's and your needs.
Much love, Happymousefairy

greenmtngirl said...

So sad for you both, Ruth--as well as relieved at the understanding and compassion you experienced, and the slower pace. I hope Hero can visit. I hope the care FL receives can bring the two of you a time of gentleness,and connection, maybe even some laughter like today. Humbled and honored that you let us be part of this passage through your words. Wishing you peace and comfort.

Jenni said...

Don't have any words x thinking of you both.

colesworth said...

I think I've been holding my breath, reading and waiting to hear he has reached the hospice. You've done so well managing in the lead up to this. So nice to hear he has a garden view and there is a writer, and that all the staff are geared towards his comfort.

Kitkat Krispie said...

I am so glad FL is finally in the Hospice. They will do all of the things you have been wanting all this time. Most importantly, they will sort out his pain management so that he is comfortable. You have done an amazing job but now it is time for more expert hands. Trust me they will treat him with the respect and care you have been desperate for him to have. You should be proud of yourself you have managed so much and done a sterling job. You can sit and knit by his bedside and enjoy his company knowing that all the responsibility is now in the hands of others. Enjoy these precious moments. My thoughts are with you. x x

Unknown said...

I haven't been online much this year, and have only just realised what you are both going through. Utterly heartrending reading, but I am very glad that your dear FL is now in a place where the staff seem to actually care about him, and that you are at last getting some support. You write with incredible grace and dignity in the face of such a traumatic situation. My heart goes out to you both. Hugs from Lorna B.

ambermog said...

Dear Roo what a hard day for you both:( can't put into words how I feel too tearful think g of your day. Much love and strength xxx

colleen said...

From here it sounds as if you - as a couple - have negotiated this most painful obstacle with courage and dignity. Sounds like you have a good doctor, the promise of sympathetic environment, and the space to talk, share be together with less worry.

poppyinstitches said...

I've been think of you today, it is horribly difficult - the staff are wonderful and so caring. I've been through this and know how hard it is, x

christina neumann said...

so hard..... you love him and he loves you.....so hard.
But he is in the best place possible. May it be a peaceful passing for him and strength to you to carry on.
When I think, this will be me someday, its difficult. but you're right, its kidney failure or pneumonia that usually does it for us myeloma patients.

gt said...

I've followed your blog for a while and admired the things you have made. I am now in admiration for your spirit and the love that you demonstrate for your husband. I am grateful that during such an exceptionally difficult time that you are writing so eloquently about it. Thank you.

Helen // Grosgrain Green said...

So glad that you are getting the support you need. Sending you hugs.

from103 said...

My heart goes out to you. Thank you for sharing this with us- you write so honestly, I really appreciate it. I am glad there are some people listening at the hospice and the writer too. Hugs to you, FL and Hero.

Mog said...

Roo, sending you love and strength. Sitting here totally choked and utterly powerless. We're here holding you up. Xx

liza jane said...

I don't know what to say. Big hugs to you. Thinking of you.

sewstyled said...

Such a sad day, but there must be a bit of relief, in a way, that FL's needs, and I hope yours are being heard! Can Hero visit at the hospice?

Miss said...

Oh Roo.
xxxx

annieloveslinen said...

A bittersweet post. It took a lot of courage to take this step yet it was the right thing to do, try to be kinder to yourself. The situation at home would have soon become unbearable and guilt-ridden. It may seem an odd thing to say but you will remember the hospice with gratitude because the time you have now will help to sustain and comfort you in time to come.

Lynn said...

Poor Hero, poor FL, poor Ruth. There is nothing I could say that would ease your way through this. Strength Andy peace to you all.

Jill said...

I've been reading you for some years now, and have tears in my eyes (at work) today reading this. You're in my part of the world - I was born in Aberdeen, and when we were growing up in Lanarkshire, our family had such a connection to Aberdeenshire that we called our house Bennachie. I'm so pleased that your FL is being well looked after and that this will hopefully give you some breathing space to enjoy being with him and perhaps worry a little less. I'm thinking of you from far far away.

Mindo said...

I'm so glad that hospice is there for you both at this incredibly difficult time.

Cherie said...

Roo, another reader in tears for you and FL, but relieved that you now have help. I loved the bit about a room with a garden view. And hopefully Hero can visit. (I'm a garden and dog person!) Many blessings for you at this difficult time.

Athene said...

So sorry - can only imagine what you must be feeling today - but relieved to hear that at last FL is receiving proper compassionate care. And hurrah for the writer in residence!

Brenda said...

Thinking of both of you and sending comforting wishes.

Suzie said...

I am so sorry. Holding you in my thoughts and prayers!

Virginia at A Sewing Life said...

I don't know that I've ever commented on your blog before, but I wanted to say that you have so beautifully expressed the different shadings of emotion and meaning that the day held. The unimaginable sadness of looking for the last time on one's beloved dog and home. The sweetness of the realization of the writer in residence. The gratitude you felt at the care you both received. I hope that now and in the future your beautiful reflections will comfort you.

Marie said...

This is unfathomably heart-wrenching, Roo. I hope that the respite you'll both get from this support will improve the quality of time you spend together. Sending positive thoughts and warm hugs to you both, xxx

Jodie said...

I can't even imagine and really have no words. You are living a personal nightmare as I'm significantly younger than my own beloved husband. I hope that should we reach this point that I have your strength and grace. What you are living is unfathomably hard. And all I can do is bear witness and pray.

Nursebennett said...

I'm not sure I've commented before, but as a former hospice nurse, I'm grateful that your precious FL and you are in their care. I have been following your daily posts carefully, praying specifically for your needs. Praying now for strength for you and comfort for both of you as you continue on this journey. You are making each step with grace.

Eileensews said...

I am hopeful the new care will give you and your loved one more comfort.
Rest when you can .

jude said...

As another long-time reader and first-time commenter, I also find your eloquence, courage and clarity just breathtaking. I hope that being at home alone, you did manage some rest and are not beating yourself up. You certainly don't deserve to do that. I wish there were more practical ways of helping than just sending positive vibes your way through the ether. Be as kind and strong to yourself as you are to FL so you can cherish this time. Much love.

Carmel said...

This is utterly heartbreaking...but also uplifting ..by generously sharing your experiences with us we know that regular folks can summon the courage and resilience to bear these most difficult life events. Best wishes to you both for strength, peace and joyful moments. Carmel

Stephen Greene said...

Dear Ms. Roobeedoo,
I've read all the comments following your last several posts. I think it's beautiful; these many people care so deeply for you and FL that they dig for just the right words hoping you will feel their spirits reaching out to hold you. Your writing is delicate as a blade, quiet and determined. Your words have shapes that walk without permission into your readers hearts. And it's good, even when tears escape and run down paths of age and worry to fall, where a void would be, but for the heart rending sadness of loss.

Isabella said...

(((Hugs))) What can I say? But he (and you) are in the right place.

The dog might be allowed to visit btw, briefly, if you thought it would be good for both of them.

Kerry Green said...

That sounds like the longest day. Your compassion and care for FL always shines through X

Karen Venables said...

Many hugs and much love x

Cazz said...

There are no words.
You regularly bring me to tears
I hope the hospice will make this very difficult time a little easier for you all.
((Hugs))

Laura said...

The hospice sounds just right, and I can't imagine the relief of being understood at last. Nothing about any of it is good, but it sounds like they're going to do their best for you and FL and lift some more of that weight from you. Take care and much love xxx

Jo H. said...

Dear Roo, I can't say anything that hasn't been said before & more eloquently by others - but just I want to add my voice, so you know there is yet another person out there thinking of you and sending all the love I can in your & FL's direction. I'm so glad the hospice care is good, for both of you. x

Sarahel said...

Tears again here too. Hugs & love.

Jen Arnall-Culliford said...

Heart-breaking as it is to be at this point, I'm so relieved that you are both getting the compassionate care that you need. Much love.

Tania said...

This post is both heart-breaking and heart-warming. I wish I knew you so that I could hold your hand and give you some comforting words. My hope is that FL is getting the care he needs and you can find some comfort in knowing that. xxx

sulkycat said...

No words. Just caring thoughts. x

shivani said...

Echoing the sentiments of those above. I'm so glad that you are both getting the support you need. Thinking of you x

LLBB said...

There is nothing more beautiful and painful than hospice care done right. It is good to hear they are taking the appropriate pace and caring for you as well. Peace strength and love to you and your family.

Elizabeth Brennan said...

Reading your blog is an immense privilege. Whilst heartbreaking... I am always uplifted and humbled to share in your story. At the very core, it a beautiful story of love, of two entwined souls in a turbulent world. And it should be chronicled just as FL's book should be treasured.
I am so glad you are both receiving the assistance that you deserve.

seamedstraightforward said...

FL is finally in the hands of the right people. Roo, you are a devoted and loving wife, please banish all those thoughts of self doubt.
Hospice care is wonderful, for both patient and family. It does however come at enormous financial cost and is funded almost wholly by charitable donations - at least, that is the case in my locality. So I hope that reading your account of the beautiful care your FL is receiving will prompt as many of your readers as possible to do whatever they can to raise funds for their local hospice and Macmillan services.
Thinking of you both, as always.

Violet said...

I'm so glad that you're finally somewhere where you are both being treated with respect. Thinking of you both.

deborah said...

I am so glad that you have found such a caring and supportive place for FL. My heart goes out to you and am thinking of you xx

Emma said...

Dear Roo,
You and your beloved FL are in my thoughts and my heart goes out to you.
xxx

Susan said...

Like so many others, the tears were rolling down my cheeks as I read your post. So pleased that FL is finally getting the care he deserves, and can end his days with dignity.

sewalign said...

FL is in the best place for him as the doctors/nurses can make him feel comfortable with the right drugs to control his pain, help him with his breathing and swallowing. You can now have more of a rest, especially at night, and also spend time during the day at his side. You have been a most caring, loving and devoted wife. God bless you.

Kestrel said...

Thinking about you both. I hope writing and knitting are helping you throughout this xx

blue hands said...

Oh my, Roo. You are so lovely and so is your FL and your dog. Thank goodness for the wonderful hospice movement. Love to you all. xx

Minigranny said...

So glad that the hospice is there for you both - they are such wonderful places! Thinking of you both. x

Alex Kiernan said...

Glad that FL is being listened to and cared for in the hospice. Hope that you can now rest and be there for him as a loving partner, rather than caregiver. Thinking of you and FL

Carmen Bouchard said...

All that I want to say has been said above. There are definitely two writers working here, FL whom I have never read and you. I don't know if this will come as a revelation but you write beautifully and this is a very special gift you should be developing.
Love more love lots it and then some.

lilysgrannie said...

I'm thinking of you both this morning and sending prayers your way.

Jennifer Hill said...

Real kindness and understanding gets you, doesn't it? Slips right in, through the chinks. I do so feel for both of you; so tough (that is it's tough, but you're both tough, too). Hoo-flamin-ray that FL is finally in a place where the medical professionals properly know and understand, and you where you can finally stop worrying over his safety, but I understand how hard that journey must have been. My very best to you both. Jen

wendy said...

I have no words that have not already been said, so I send you hugs. You have been in my thoughts every day.

Ms Goodenough said...

Roo- you and FL have had the most precious thing- true love. It is right that FL can have this quality of care and attention and you can know he is receiving the things he needs that you can't give and you have the space to give the precious and special thing that is your relationship. So sad, so overwhelming, so important, so special. Sending love.

Dottie Doodle said...

How lovely that the doctor recognised how wonderful you are. Thinking of you both.

Sadie said...

Oh, Roo. I can't imagine how hard that must have been, but I'm so glad that the hospice sounds like a warm and compassionate place where FL will be comfortable and cared for. And especially pleased to hear about the writer in residence - what a wonderful idea.

Louise Perry said...

Xxxx thinking of you both at this horrible time.

wotsybaby said...

oh gosh, it sounds like you have some wonderful help at last, not just for the patient, but you too.

what an amazing and thoughtful space - thank you for your writing.

xo

Debi said...

Sending all my love your way! So glad FL is getting the attention and support from doctors at his pace! xx

Glasto63 said...

So glad that you have both found this safe haven at last, and that you have had your amazing patience and kindness recognised. Hopefully FL will be able to take full advantage of the resident writer. With kindness regards to you both.