Thursday, January 21, 2016

Toilet Dishtowels

Have you ever had word-finding difficulties?
Where you know what you mean, but you just can't identify the right word?
My go-to substitute is "cauliflower", because it is such a ridiculous word in itself.  Much better than "thingy" or "wotsit".
My poor dear FL has been utterly lost for words this week.
He can barely speak now, as his throat is so tight and dry.  Sign language is helping with simple requests:  "I need to lie on my side now" is a tilted hand gesture, and rounded fingers lifted towards his mouth indicate the need for a drink.
But he had me foxed this afternoon as he pointed soundlessly towards... what?  Where?  I made at least a dozen suggestions, all of which met with a frown and closed eyes.
After taking a sip of water he managed to croak:  "Toilet... dishtowels".
Oh lordy, what did that mean?  Did he want a pee?  A heat pad for his sore ribs?  Something to do with water?  Pillows?
The nurses tried too, until he gave up in frustration.
And then the penny dropped:  "Tissues?"
He smiled - yes!
Who knew?!

It had been another bad night.
It has not escaped my attention that he really struggles at night.  It is dark and he is alone with his morphine-induced nightmares.
He told me he missed me when I was gone.  There was no mistaking those words.

When I arrived this morning, the Consultant was with him, listening to the few words he was able to squeeze out and agreeing with him that there is no need for him to be in pain.  They had tried reducing his dose of Hydromorphone overnight, with bad consequences.

The Consultant explained to me what I already knew:  that he is no longer eating, and drinking is painful.  As his ability to swallow reduces, they will have to administer his pain relief through a syringe.  Food is no longer offered in an attempt to sustain his life, but as a comforting gesture, to make him feel cared for and nurtured, with no real expectation that he will manage more than a tiny taste of something very soft and smooth on his palate.  They had tried mixing his pain medication into a spoonful of yogurt, but he could not get it down.

I know that he is absolutely worn out and weary.  He cannot change position in bed without assistance.  He cannot reach for the drink at his side.  He cannot stand up without the support of two nurses.  He is defeated.  It is unbearable.

So when it comes to be time for me to head home, I try to make it a lighthearted parting:  a gentle kiss, a silly dance to the door and maybe even a chorus of  "So long!  Farewell! Auf Wiedersehen! Goodbye-ee!"  But it is so hard.

Today as I was leaving he whispered, pointing:  "Tablet?"  and by a process of elimination I understood that he wanted his watch.  As if knowing the time will make morning come around that little bit faster.

Today I dedicated myself to my handspun Qwist hat.




57 comments:

Star speckles said...

Thinking of you. I can't imagine what you are going through, FL is so lucky to have you. Your love and care shines through your blog.

Your hat is also very gorgeous

xx

seashell bluez said...

Fruit-flavoured Icicles perhaps?

Knitlass said...

Poor FL. I hope tonight is more comfortable and peaceful for him. I hope you are ok. It sounds heart breaking to leave. Sending good wishes to you both.

Lorna A said...

Ruth, my admiration for you grows daily. Telling us all about these difficult days when I fear I would be a mere wreck. Leaving must be hard, I think I can imagine what it is like.
I like your shoes. Xxx

Carol said...

Roo, know that you're being heard, your love for FL shines through and your own pain is palpable and being borne with enormous courage and grace. Holding you both in thoughts (( )).

seashell bluez said...

Ice lollies? Icepops? Nor sure what you call them there.

Carol said...

Ps. Can I 'borrow' cauliflower' for the times when words hide behind the rocks in my brain?

Karen Venables said...

I check in every day to see how you are both doing. Sending warm thoughts your way, for you and FL. Love your shoes, so cute :)

lorna brown said...

Oh. Tears. I am so sad for you both. I'm a total stranger, but if I wasn't a couple of hundred miles away I'd be round to yours with hot soup and a hug. Wishing you the strength to get through this. Xx

PS the hat is beautiful indeed.

lorna brown said...

Oh. Tears. I am so sad for you both. I'm a total stranger, but if I wasn't a couple of hundred miles away I'd be round to yours with hot soup and a hug. Wishing you the strength to get through this. Xx

PS the hat is beautiful indeed.

poppyinstitches said...

it is so very difficult, like others check in every day to make sure your ok and send you a big hug. x

Lizzi said...

Me too - same as the last post.
x

Sarahel said...

You make my heart ache, I can only imagine the pain in your own. Wishing you peace and love,

Emma said...

I cannot think of what to say that may be of any help to you. Expressing my sadness is, I feel, selfish. Yet I feel so very sad, for a man that I have only 'met' through your words. My heart goes out to you both.
I hope that your beloved FL is more comfortable tonight. Less scared. Less pain.
Take good care of yourself, dear Roo, so that you have reserves to give to your FL.

Suzie said...

Hugging and praying.

colleen said...

This makes for painful readiing, evoking memories of similar situations. Hope there's enough space on that bed for some gentle stroking and hugging.

Mags said...

Still thinking of you both. Much love xx

Mapmaker said...

When my dad was in hospice, we left a small lamp on in his room at night. Maybe they do that where FL is, but I think it helped.

Susan_in_Peckham said...

Thinking of you both and hoping for a quiet and restful night

from103 said...

Thinking of you both during this heartbreaking time, Sx

CarolS said...

Health food shops usually sell fruit juice in tubes that can be frozen, then sucked easily by the unwell.
This is all so sad, and you are so strong and patient.
I'm with everyone here, thinking about you both, daily
XXXXX

Gillian Hall said...

It is hard to read this post without breaking down. How much more difficult for you. I hope writing it helps, even just a little. Your love for each other shines through every word.

Athene said...

Thinking of you.

Mog said...

I hope you both have a better night, and that tomorrow is less painful. Sending love.x

Charlotte said...

Oh oh oh. So very hard -- on the both of you. Poor FL. But you must continue to care for yourself ... you just must. Mexican saint candles lit for you both here ... I left the One True years ago, but I took my favorite Mexican saints with me. Candles, prayers, good thoughts for you both flickering all across the globe ...

Spikeabell said...

Hello Roo,

Another of your blog followers who rarely comments. Love your knitting, sewing and spinning but it is your character and spirit that shines through in your bright clothes, human relationships and thoughts about finding your 'ethical' spot in the world that make your posts so compelling.
Such a difficult time it is right now... thinking of you, FL and Hero...
with Love

Unknown said...

Do they have mouth swabs there? They come in a package and you can just run them around your mouth to ease the dryness. You don't have to torture yourself swallowing. My parents were both on liquid morphine towards the end, because you don't have to swallow it, it absorbs through the mucous membrane. Since they were at home, we were in charge and we just gave them as much as they needed to keep them comfortable. We really didn't mind if it meant that they slept all the time or that their life was a little shorter. We had said everything that needed to be said. I hope that everything works out for you and FL.

K.Line said...

Oh, Roo. This is heartbreaking. But you are awesome.

Rachel said...

Thinking of you and wishing you strength. This time is so hard.

Adele Terrill said...

I'm sorry Roo, it is just not fair what you are going through. Checking In each day to see how you are doing, I am amazed at your stamina, your love and care is amazing. X

Jodie said...

Oh my goodness life just sucks some days doesn't it. Thinking of you both and hoping for better for tomorrow

MaryinTN said...

Oh Roo. My heart is breaking. This is so unbearably sad! I pray you and FL have comfort and less pain.

Nursebennett said...

Your deep love and devotion for him is tangible, I wish someone were there for you, to hold your hand, but then I know each moment , no matter how difficult, is treasured. There are so many who believe themselves unable to stand by their loved one, believing it is too hard to bear the sights, smells, the watching life leave bit by bit, but I think it is the greatest gift you can give FL and to yourself and in the days ahead you will be ever so thankful for each moment you spent by his side. God be with you always.

Andrea Peterson said...

Dear Roo, As hard as it is, it is such an honor to be with a loved one in their final days, such an expression of love for you both. I know that I am one of a large number of people feeling the honor of making this journey with you and thinking of you every day. Andrea in Denver

Philippa said...

By sharing this with us, I hope you are getting even a little comfort in knowing that people are thinking about you and sharing with you and wishing your path as smooth as can be xx

Susan said...

Every day I check in and read. You are doing amazing and I pray that you and FL are comforted in these difficult days.
I also thought of ice lollies and I too love the shoes! And hat!!

opakowana said...

I am reading your posts with a bigger and bigger rock/thing/cauliflower growing in my throat. and more and more tears in my eyes.
If , by writing that I feel for you and send you hugs, it helps you carry this enormous weight on your shoulders and in your soul, then I want to write more and carry at least some of your pain.
I wish you strength to carry on leaving FL lightheartedly...

and I feel exactly the same as Andrea Peterson above. She has put those feelings in much better words.

sewalign said...

As FL finds it painful to swallow, the nurses need to give him 'mouth care' - dipping tiny (pink) oral sponges (on a tiny stick) into water and refreshing his mouth as this will make his throat less dry and less painful. My sister had this care when she couldn't swallow in hospital.

Kitkat Krispie said...

My thoughts are with you. There is nothing I can add, everything has already been said by others equally wise and experienced. Mouth swabs do work a treat as does slightly melted ice cream. I drove around for hours, in the winter, for any tubs of Losely Ginger ice cream I could find! It was worth it to see a smile of satisfaction on a love ones face. My thoughts are with you.

Jenni said...

I can only echo the words of others here and let you know you ate loved by the strangers you have let into your life through this blog as we no longer feel like strangers but friends x sending you strength xx

rosylea said...

I would underline what others have said, oral care packs with little pink sponges and a sort of neutral mouthwash can give some comfort. Wishing you both well. R

agirlinwinter said...

This is heartbreaking. I'm sending you a virtual hug and hope you have the strength to get through this time x

Wakeymakes said...

My mum in law was on an oxygen mask which dried her mouth and throat. She had the pink sponges soaked in pineapple juice as that helps stop sores in the mouth and is tasty. Yorkshire love and hugs K xXx

Eirini said...

Loss of words is really unbearable - when I couldn't understand what my husband wanted from me I was feeling that I was failing him - it was so hard to take...Hold on..Just be there for him and don't give up on communication- you can whisper to him, sing and touch him even if he cannot respond. Wishing you whatever it is smoother and less painful...

Louise Perry said...

Deeply sad for both of you. Poor FL my thoughts are with him.

Lynne said...

Today brought tears reading your message... poor things, both of you. Music? Is there a gentle music he likes that might remind him of you? A sweater with your scent on it for him to snuggle,.. I mean scent of you... seems silly, but might be a comfort. A way for you to be there, without actually being there? And as a nurse, such things are not silly and do mean a lot to patients. So I am sure they would understand as well. Hugs, gently, to both... prayers... like warm steam rising up from my heart's teacup for you! ;-)

Carmel said...

Poor, dear FL. What agonies for the both of you. Best wishes for strength and peace.

Susie Hewer said...

Dearest Roo, there really aren't any words are there. Watching your first love fade away and just waiting for the inevitable must be unbearable. Your pain is palpable and my heart goes out to you. Much love and gentle hugs, Susie xxx

Sew little time said...

thinking of you both as ever roo. wishing you all the strength you need for such a sad time. x

Sharon said...

Tears to go with my tea and toast as I read this post this morning. Words are inadequate. I hope you can feel the support and thoughts and prayers and love from all of us around the world.

coyotewoman said...

Seems every morning I wake up and wonder "how is my faraway cyber-friend, Roo, today?" I say friend - I as others feel more than a reader, a blog follower or a voyeur; I feel allied to to you and FL though we've never met face to face. Sending support (through thoughts and prayers), empathizing with your struggles and rejoicing in every triumph. I read your words and I hear your voice. Hoping for much goodness today.

JustSewJenna said...

I'm thinking of you both in this heartbreaking time. I hope you are coping, and like many others I wish I was close enough to offer some support like a dog walk or a hot meal. Sending lots of love xx

Alimak said...

My best, warmest wishes to you both.

Your hat: the yarn looks heavenly soft and... hmm... shimmering in the photo. But I think I'm having problems with my sense of scale -- I thought I was looking at the body of a bottom-up sweater. Now, that's quite different :-)

Susan said...

I am another reader that checks in everyday now to see how you are both doing. I could not even begin to imagine the pain you must be feeling,yet your strength never seems to waver. Love and peace to both of you.

TempestKnits said...

The same happened with my Father with the finding of words. His throat too was very dry and sore, and he kept asking for 'a black square'. We had no idea, until we suddenly realised he was referring to his favourite Jakeman's cough sweets. Of course, we couldn't let him have one, as he would most certainly have choked on it. Telling him this gently seemed so cruel. We were offered lemon swabs instead, with which we could help him to moisten his lips. If this becomes an issue Ruth, the hospice will certainly have some. You are so brave, and FL is a dear heart indeed.

Jennifer Hill said...

Thinking of you. Jen

ambermog said...

Oh Roo, my heart hurts so much for you both and the painful steps on this part of your journey together. Sending more strength and love for you both xx