Sunday, January 17, 2016

A Quiet Day

Finished Christmas Day cast-on socks
The first thing to say:  thank you so much for commenting with details of dog-fostering services which might cover my area - I had no idea they existed. Amazing!

However, since asking the question, I have done some serious thinking and came to the conclusion that I need the "excuse" of the dog to get away from the hospice at night.

That sounds terrible!
Let me explain...
I have got into something of a routine.  I get up around 7am, breakfast and shower, gather together anything I need to take to the hospice, then feed and walk Hero.  I take him out on the lead, and let him run free on the way back.  He knows he will get a doggy treat when he gets home, so there is an incentive not to wander off on the return journey :)
Then I drive into the city to see FL.
Visitors are welcome from 10am and I am usually there shortly after that.
I sit in a chair next to FL's bedside with my knitting.  If he is asleep, I listen to a podcast on my phone.
At noon, visitors are expected to leave patients to have their lunch in peace.  However, as FL has not been eating, I have not been leaving him for long:  maybe fifteen minutes, while I get a mug of tea or coffee in the reception area.
I return to my seat and stay there until around 4pm, when I head home to beat the rush hour and with the intention to let Hero out again before it is dark.
My journey takes about 3/4 of an hour each way, depending on the traffic.
I get home, feed and walk Hero and then feed myself.  By that time I will not have eaten for almost 12 hours.  The hospital MacMillan nurse has already remarked that I have lost weight.  It is not intentional!  It has been difficult to look after myself when all my energy has been going on looking after FL.

Today FL was asleep for most of my visit.
He had a bad night of pain after his fall, and the doctor had allowed him to have painkillers on demand.  As a result, he had taken about 20mg of Hydromorphone:  far more than he has ever had before.  I don't think the doctor had expected him to ask for so much and is keen to wean him off it again as soon as possible.
FL did not ask for painkillers all day.
He woke at 1pm and went to the toilet with his zimmer frame and assistance from a nurse.
He tried to sit up for a little while, but was too uncomfortable, so was soon back in bed again and fast asleep.
I offered him water each time he stirred. He took a few sips.

And as I was sitting there, reading the comments about dog-care services on my phone, it dawned on me that if I stayed overnight, I would continue to behave like this.  I would spend the night watching over him, listening to him breathe and reacting to every murmur with an offer of help.
And that is not sustainable behaviour.
If were to stay there 24/7, I would be a wreck within a day or so.
I need to get away, to gather my strength, to eat and to sleep.
I need to keep a semblance of my own life going, readying myself for a future that is not entirely dedicated to my darling FL.

He has been the sun around which I have orbited for so very many years.  Sometimes my orbit has swung quite a long way out, but I have always been drawn back in.  Right now I am in danger of going into freefall if I don't keep a little distance, if I don't remember that I am my own person and that I have to go on living after he has gone.

Ziggy
So I will take care of his daft old dog for him.
I have bought a grooming brush, and Hero was shocked to find himself being de-fluffed for the first time in his life.  If he's not careful, he might find himself in the bath one of these days!

Some of you suggested me taking Hero to visit the hospice.
There is a sign saying that dogs are allowed in on a lead, and I suppose I could open the French windows to let him into the garden to chase the squirrels...  but he is not a socialised dog.  I actually think it would be very stressful for all of us:  FL, Hero and me.
Better that we continue as we are while we can.
I have the local gamekeeper on standby to let the dog out and feed him in an emergency.
I believe that is the best thing, for everyone's sake.

Tomorrow I will have a new project to work on.  I am test-knitting the Starman shawl for Helen of The Wool Kitchen, using her gorgeous Ziggy colourway.
Because David Bowie and my darling have something other than a cancer diagnosis in common:  one brown eye and one blue :)



54 comments:

Charlotte said...

That doesn't sound terrible at all! And I'll admit, I thought having the dog to take care of, his dog, an extension of FL is a very good excuse -- because it's still, by extension taking care of him. And just as he has a difficult task of separating from you and all of everything, you have difficult emotional work on your plate as well. So good for you for figuring out how to take care of yourself in this difficult difficult vale.
Dog walks can be a salvation. They get one out of the house, out of one's head, into the natural world and fresh air.

Jane Neave said...

My thoughts and prayers are with you both. Look after yourself and keep strong xxx

Jen Forsythe said...


Ah Roo, I am so glad that you've decided you need your 'away times' too. The reality is you could actually be doing these visits for quite a while. I've been visiting my dad now, almost daily, since April (and he is in a very similar medical situation) - although I love him dearly, half the time he doesn't know I'm there, he's been up and down so much. I know it's different in that FL is your husband but it is so important that you still look after yourself and eat properly etc. Even mentally, you need a break - you will get into a routine, one that suits you both. Also, the dog is company for you too and part of a routine.

Mags said...

So very relieved that you have come to that decision; you have needs too. Thinking of you both x

Athene said...

You are absolutely right. And you need to look after yourself, so that you can look after FL. Can you not get some lunch while he has his? Glad that he has been more settled, thinking of you.

Twelfthknit said...

Sounds like you are making wise decisions.

Lorna A said...

As others have said before me, I too am glad you can see that you need Hero as a means to take care of yourself. Could you not make yourself a picnic to eat midday? X

Carol said...

Agree with every thing Charlotte says, especially the importance of giving yourself some time and space. Suspect that Hero may live up to his name at present.

vanDoor said...

Glad that you are looking after yourself.

Galica said...

I've read your blog for years now and have always admired your courage and commitment. You have managed to withstand the onslaught of this illness and hold it back so well that it seemed that it would never get to this point. No-one could have done more.

You are entirely doing the right thing. You need to eat and sleep and regroup for all your sakes - yours, Hero's, your children's and even FLs. Suppose you chose the path of superhuman self-immolation now, you might completely wreck yourself and end up sick as well, just as you need all your strength. You can't afford to collapse at this time and you know it. You are not being terrible, you are being wise.

I continue to read your story and hope for the best for you while dreading the day I hear the worst. But keep strong. You have done and are still doing an amazing job.

Lizzi said...

You are a wise woman- and you have to deal with what is in front of you -however you see fit. I would do exactly the same.

Emma said...

Dear Roo,
You are, of course, completely right! You need to do what is best for you and your beloved. You won't be able to give him love and support if you fade away. Follow your heart.
Thinking of you and your FL.

Sabs said...

Please make sure you eat!!! x

GailD said...

Hello, I've been a 'lurker' on your blog for quite a while. Drawn by your sewing and knitting but also because what you are going through with FL is similar to the decisions I had to take when my Dad was ill with cancer. I often felt guilty, but in the end I realised i was doing everything I could and I would be no use to anyone if I made myself ill. And... Hero needs you too. Huge hugs xx

Jen said...

Oh Roo, thinking of you all... and look after yourself... xxx

Alex Kiernan said...

A very brave decision - and completely the right one for you, FL and Hero. Thinking of you all.

Jodie said...

Roo - you are wise in your choices - and you may well decide at a later date that you need to be with FL "round the clock". Find a way to start bringing some lunch or snacks with you. Sometimes a few different "small bites" is more appealing than a larger lunch. I know that when stressed and worried I'm not hungry...but try. Think crackers and cheese, fruit, dried fruit, chocolate, hummus, granola bars....perhaps a grocery store in the city might have some prepackaged "takeout" items - even cut up fruit and vegetables.
At least you have info and options for yourself in regards to dog care. Know that you have a worldwide collection of readers, witnesses, and supporters. Don't feel badly for taking info, being grateful for it and choosing otherwise for yourself. I won't say don't feel guilty - but try. Hugs from Alberta where it is bitingly cold clear and sunny January day. Best wishes to all of you,

Alex Kiernan said...

A very brave decision - and completely the right one for you, FL and Hero. Thinking of you all.

Philippa said...

My Mum is always telling me that if I don't look after myself I won't be able to look after anyone else, and she is always right ;) Xx

Adele Terrill said...

It doesn't sound terrible, more like wise self-care to me. You can't go on giving and giving without making some deposits in your own health, mental and physical and emotional. The dog sounds like just what you need. If you are on a plane, the emergency card tells you that in the event of an emergency you should put your own oxygen mask on first before helping children or anyone else. Completely counter-intuitive to any parent but wise because how will you be of any help to anyone if you conk out yourself? Put your mask on and take a few deep breaths and you will find you can deal with what lies ahead much better. Thinking of you both x

Sarahel said...

This seems both brave and sensible to me. But most importantly it feels right to you, for both of you, for now, and that's all that matters.
I saw a glimpse of that shawl somewhere - it looks amazing.

Louise Perry said...

Glad you had a call day. Try to remember to eat. I completely forget to eat when I am stressed so I know how easily done it is. Thinking if you both.

CarolS said...

Love the "put your own mask on first" metaphor. Do what you think is best. Do eat though, eg carrot and celery sticks that are very sustaining and thirst quenching too.

Mairead Hardy said...

You are a very wise woman who has borne so much with such quiet courage. You have made the right choice to look after yourself as well as being there for your FL. Sending you more fortitude for what is to come

Brenda said...

I'm so glad you are listening to yourself and taking care of your needs. Thinking of you!

K.Line said...

That is eminently sensible. Getting some time to breathe and take care of yourself is totally the right thing to do. Amazing that you have the perspective to recognize this.

clb said...

This is an Extremely Sensible Plan and I applaud your wiseness thoroughly. And if things change, you've got the knowledge now re dog-care if you need it. I hope Hero enjoyed his brush! About getting more food into Roo: is there a favourite meal or two that you could make a big pan of when you have time, and freeze in containers for quick easy consumption? I know sometimes it's not so much eating that's a problem as summoning up the energy to cook something. My standbys are a multi-veg chickpea stew and leek-and-potato soup, both easily decanted into a thermos for having elsewhere, like hospice receptions, if needed. There are excellent little flasks now that keep their contents hot for hours, and if you were carrying one around with you, it might remind you to eat it :)

Mindo said...

Yes, I agree that you need to have some time for yourself -to eat, sleep, bathe and have 'downtime'.

When my father was in hospice care I visited 6 days a week, spending every afternoon and early evening with him, knitting as you do, chatting when he felt like it, feeding him his dinner when he needed assistance, and settling him down for the night. On my 'day off' when my brother visited from his home 3 hours drive away, I used to go out and treat myself to an ice cream and walk along the beach. I needed that time to myself.

Gillian Hall said...

Very relieved to hear your decision; it was always a huge relief for me to get back from the hospital and immerse myself in a bit of 'ordinary' life before the next visit. And sleep is so important. Look after yourself in whatever ways you can. xx

Melissa said...

Let's start off with remarking on your last comment about the eye colours. That's amazing!

I am glad to hear that while you examined all the information that others have provided about looking after Hero, you are able to make a "stand back & examine" judgement to keep in mind that you need to look after yourself. It's very sensible as you can't support FL if you suddenly collapse like a wet noodle! And you have a back-up plan for Hero's care. Little step by little step.

I hope you and FL will have a good week together. As always, my well wishes to you both.

PS That yarn looks amazing!

LynneSews said...

You are so eloquent! And very wise. Hang in there!

jessica said...

Sounds like exactly the right decision for this moment in time - and a wise one at that!

I was also thinking that soup in a thermos could be nice (along with crackers or some bread?). Eggs can be hard boiled and stored in the fridge - I sometimes make 4 at once and eat them through the next 3-4 days, they're very handy to tote around. Anything that's grab-and-go-able, like apples/oranges/bananas, are nice because it cuts down on the amount of prep time they require. So single-serving yogurts (with a baggie of cereal/granola), while not the kindest to the environment, might be kind-to-Roo for the moment. And I don't know if avocados are readily available in your area, but they can be eaten straight up or smeared on toast/bread. Nuts, cheese (you can put a hunk + knife + crackers/bread into a tin), dried fruit, sunflower seeds, etc. Also second the idea of double/triple batch cooking and freezing (I like doing this with soups, lentils, chicken, and also baked goods like cornbread or banana bread - the nice thing about the baked goods is you can cut into single serving pieces, freeze, and then on your way out the door you wrap 1-2 in a cloth napkin and it'll be thawed by midmorning/midday). You might also think of stocking up on little "goodies" like biscuits and chocolate bars. I know those aren't terribly healthy, but sometimes it's the calories that count (especially in a pinch), and also when you're going through a tough time, little treats can be nice. I have nothing against vegetables, except they usually require slicing, which I often find is my mental block against actually eating them raw outside the home - but cucumbers, carrots, celery, bell peppers all work well as a snack on their own, with hummus, etc. You can keep an "emergency stash" of crackers/biscuits, some nuts in your bag, and a chocolate bar in your bag at all times.

Anyhow, I'll stop with those suggestions~ Thinking of you both. And what a tasty skein of yarn ... and a fun test knit project!

Christine Sweeney said...

Love the Starman connection, love that you are in a groove of some kind that works for you. This is what life and death is all about, IMHO - authenticity. I can only marvel and offer support from afar. M-C

Lynn said...

You as worthy of care as FL. I don't imagine he would have you fail yourself to put him first every minute of the day. Some peace and down time will allow you to be stronger when you are with him.

Susan said...

A very sensible decision Roo. You are greeting FL more refreshed which is better for both of you. The new project sounds perfect.

MaryinTN said...

Very wise decision. How can you take care of FL if you are out for the count?! Good to keep a routine with Hero. I like the way you have developed the walking routine to keep him in line, and that routine is probably comforting for him. I'm sure FL greatly appreciates the care you are providing to his beloved Hero too. It's too bad Hero is not good in social settings... Pets are sources of comfort for those who are ill. Please take care of yourself too. Rest, food, down time for yourself are all in order.

Carolyn said...

I'm thinking of you, and I'm glad you are taking care of yourself too. You are one of the most selfless and generous human beings I know.

sewalign said...

You have made the right decision. It is important to have some respite and look after yourself. I recall going to visit my dad in the hospice every day for his last week. Most of the time, dad was asleep because of the strong pain relief (morphine). You need your sleep. God bless you. Caroline

Sew little time said...

I completely understand re hero - you definitely need to keep some semblance of your own life away from the hospital. Is there no cafe or anywhere thelat you can grab a sandwich from? Failing that, a friend of mine makes sandwiches in batches and freezes in individual bags so that they can grab from the freezer on their way out the door. Maybe that would work for you? Lots of love and thinking of you both. Xxx

Sew little time said...

I completely understand re hero - you definitely need to keep some semblance of your own life away from the hospital. Is there no cafe or anywhere thelat you can grab a sandwich from? Failing that, a friend of mine makes sandwiches in batches and freezes in individual bags so that they can grab from the freezer on their way out the door. Maybe that would work for you? Lots of love and thinking of you both. Xxx

rosylea said...

You need time to "reboot" so that you can be there for him when you visit. It's the right decision, to look after yourself, I'm glad you are finding a way to do that. Thinking of you both, R

Jen Arnall-Culliford said...

I'm glad to read that you're recognising your own needs. Self care is vital. xx

opakowana said...

I feel for you, Roo...but as soon as I read that you would look into staying at the hospice I thought - NO, she shouldn't. One - it could go on for longer than, well - anticipated? You write frankly about the situation, so I hope you don't mind that I do, too... You need to retain your part of the mind and the soul. The intensity of caring for someone so ill burns you out. And then you are left with a chasm, not just a hole in your soul. But you need the drive home, you need the dog walks and the aftermaths of bin raiding by Hero and you need to eat your food.
I remember how quite a while ago you wrote about your future. Future without FL, because it's inevitable, no matter what we hope and believe and hold on to.
And I have always remembered ... Hayden Bridge and the little tea room....

Look after yourself, take your own food into the hospice - for yourself and maybe for FL, for his comfort, too. Then go home to recharge your batteries as you need care too.

pamela said...

Dear Roo - do please eat. You need energy, emotional and physical, and good food will also protect you against coughs, colds, chills and other winter ailments. Your wish to keep a balance between care and space for yourself (and the dog!) seems absolutely wise and sensible. It won't help FL if you become submerged in his illness to the exclusion of everything else. No loving partner would want this. Sending you both warm thoughts, good wishes, and hoping for some calm, tranquil, pain-free days.

Lynne said...

I loved reading this post and I think you are very inciteful and very wise to take care of yourself. How sad that we cannot be there to deliver warm meals or maybe a lunch for you to eat while you are there. Maybe you could take a few seconds in the morning to toss some crackers and some cheese into your bag? That way you will have something to nibble on while you knit and drink your tea? Maybe you could do that for yourself since we cannot do it for you?

JustSewJenna said...

I think you have made a very wise decision and you need to be kinder to yourself. You need to be there to look after yourself and Hero too. I am really looking forward to seeing your Starman shawl, I love the Ziggy wool - its going to be amazing. Take care xx

Mad about Craft said...

My husband is 10 years old than me so if life follows the pattern of the younger out living the older I may well be in your position one day. I hope I am half as insightful and organised as you.

gemlad said...

Recent lurker, first time commenter.

I have a rule, that I picked up from a first aid course, which I think applies to a lot of situations in life.
Rule 1: Look after yourself.

If you don't, then you won't be much help to those who also need your help! You sound awesomely strong and practical, and also very loving.

(There is a Rule Zero: Don't be on fire. I didn't pick that one up from First Aid!)

Laura said...

That all sounds very sensible. Taking time to breathe, rest, eat and just be is going to save your sanity in the long run. And I'm sure Hero will appreciate it, bath or no bath ;) It sounds like a very good routine, with enough time and enough space for both you and FL.

Hope he's more comfortable today. Much love xxx

greenmtngirl said...

You know exactly what you need, Roo. All our suggestions and comments are just placeholders for our concern and care for you and FL. I know that even though we don't know each other, I wish I could be there to help, to walk Hero, to cook for you, to make this time easier and better somehow. Do exactly what makes sense to you--you are the one in the situation and you have all the wisdom, strength, and courage you need to be in it and to walk through it.

PaisleyPirouette said...

You have made the right decision, you have to care for yourself. I agree of taking some snacks with you to hospice as others have suggested. You have to stay healthy physically and for mental health you need some time dedicated for yourself. Thinking of both of you!

Violet said...

I think you've made the right decision. The doctors in the hospice are very experienced at knowing when things are deteriorating - if they think that you should be spending more time/staying overnight there they will let you know. It's also not like a hospital where the presence of a family member is often the only thing that gets the patient the attention they need! I know that it's hard to think about food when your mind is occupied with all sorts of other things, but you need to keep your physical strength up in order to keep your admirable mental strength. Thinking of you both.

Miss said...

PS I forgot to add that your socks are delicious!

Sarah said...

Once when I was going through a difficult time in life I didn't have the will or desire or appetite to eat. What got me through were canned meals -- I think they were called Ensure -- anyway, they are liquid with a balanced amount of nutrients. Maybe that would be something you could keep at the hospice until you can find the head space to organize meals. They didn't taste great, but they weren't awful either. Praying for you both. sarah@forrussia.org