Monday, January 11, 2016

On the Waiting List

Today was a day of emails and visits and phone calls.
I started my morning with an email to the hospital-based MacMillan nurse, setting out the events of the weekend and letting him know that we are not safe here on our own.  Because that is what it boils down to now.
And as I expected / hoped / perhaps even prayed, the MacMillan nurse did not let me down.  He rang me to confirm receipt of my email and then sent up the distress flare on my behalf, contacting the district nurse, the GP and the community MacMillan nurse to spur them all to action.
A pair of district nurses came at 11am, took FL's blood in readiness for tomorrow's hospital appointment, and asked for the story of what had happened on Saturday night.  They had a look around, to see how far FL has to walk to get to bed and bathroom and wondered about supplying a commode for the bedroom...?  But when they started to talk about installing a hospital bed I began to panic.  They seemed to be saying that we could continue to manage on our own, that gradually he would spend more time in bed and that would make it easier in many ways....?
I explained that there is only me and I can't do it all on my own.  I can't cope on my own.    And maybe that was the admission of defeat they were waiting for.
Was it some sort of a test?  I don't know.  But by the time they left, they said they would be recommending to the GP that a place be found for FL in a hospice or the acute ward of the hospital.
The next incoming phone call was the GP, who had heard from the district nurses that FL was "not so well"... how many painkillers was he taking?
The GP was still on the phone when the MacMillan nurse arrived at the door and had to be let in. The GP told me to talk to her, and to ask her to contact him later in the afternoon, and hung up.
The MacMillan nurse talked to us for a long time.  She asked what we thought she could do for us:  I explained that I hoped she would be able to coordinate some support, because we were getting nowhere.
She said that was not her role:  that this was what the GP was supposed to do.  The polite version of what I said in reply was that he had not demonstrated such skills thus far.  I told her that he had not returned phone calls I had made to the surgery, that he had only met FL on one occasion, so had no way of assessing how he is now compared to how he had been until maybe 3 weeks ago, and that I had not been impressed by the said GP's professionalism on the night of his only visit (the detail of which is not for blogging, but which I shared with her).
Her eyebrows shot up and she declined to comment but agreed that it did not sound as if the GP had been of much assistance in progressing FL's care.
She was concerned that nobody had asked to test his urine despite me reporting to the district nurses that he had not been able to pee for 24 hours and had then produced scarily dark liquid.  At the very least she thought he might have a UTI, but equally likely it could be evidence of his kidneys shutting down.  She was appeased by his report of "ordinary" pee this morning... but nevertheless...
The  ridiculous irony of all this was that FL was completely engaged with the conversation.  Positively perky.  And this made it very difficult to communicate that just two days ago he was incoherent and confused and unable to stand up.  That he had been so sleepy that he had let pills dissolve in his mouth, unable to swallow.  I tried to explain that he spends 22 out of every 24 hours asleep and that I never know how he is going to be when he wakes up - perfectly fine, or totally out of touch with the world.
She frowned, as if she didn't believe me.  And I can understand why - he was presenting as a perfectly normal, if somewhat frail elderly man, who had maybe had a bug over the weekend.  She said she did not see why the hospice had been suggested:  it is for assessment of people with symptoms that suggest they are near the end of their lives, which was clearly not the case or the GP would be aware...?
 I pointed out that the GP had only met FL once, so how could he possibly make any sort of assessment of FL's health?  And that the Consultant at the hospital, who has known FL for 8 years, was the one who proposed the hospice and had made a referral last Tuesday because she recognised the change in him and his rapid decline.  That this was not my idea!
She asked why we did not have nurses visiting, a zimmer, a wheelchair, a hospital bed...?!
And at that point all of my frustration poured out as I explained that I had tried to get help but that I didn't seem to be able to make anyone understand... and how was I supposed to keep him warm in a house that is cold and wet with inefficient heating, or wash him in a wind-tunnel of a bathroom with intermittent hot water... that the only time he gets a wash is when he soils himself in the middle of the night and I have to get him into the shower despite his protests against cold and hot and wet... and what are we going to do when the snow comes and we get cut off for days at a time, as we always do...?!
And somewhere in the middle of the outpouring, she understood my fears.
We are not safe.
I am not coping.
The house is not suitable for an invalid.
And this situation is absolutely not sustainable through an Aberdeenshire winter.
She put down her pen.  And finally it seemed that my words had made an impact.
It would appear that FL's symptoms are not in themselves enough to get a bed in the hospice, but his crumbling home and his crumbling wife most certainly are.
"The whole picture" was how she put it.
It is suggested that we make our own way to the hospital tomorrow as planned, and that his prospective blood transfusion may actually take place in the hospice.  We should take his overnight bag with us when we go.
And FL agrees that this is the only possible course of action.

The district nurse rang a short time ago, to tell me that a nurse is coming to help put FL to bed tonight "sometime between 8 and 10".  Better late than never.

The hospital-based MacMillan nurse rang to find out how the day had gone and what had been agreed, to wish us a good night and that he would see us tomorrow.

And so it is that FL is now on the (short) waiting list for a place in the hospice.

I feel like a traitor.





73 comments:

sulkycat said...

Never a traitor. Simply someone battling to do the best in an impossible situation, for the man she loves and for herself. Mum did all the caring for my lovely Aunty (she went to stay for a week, ended up being there for a year, literally)yet now berates herself for not doing enough - she couldn't possibly have done more. Such is the nature of loving someone.
Sending lots of sympathy, empathy and caring wishes to both of you.

Catherine said...

NOT a Traitor - absolutely doing the right thing in the circumstances! Good luck...

Kel said...

Oh, Roo. I am a long time reader and have never commented before but have tears in my eyes on the bus home reading this. You are NOT a traitor at all. You are the only person with the whole picture, and you are doing your very best. You are insisting on the best care for FL through love and through wanting what is best for him, no matter what. That is very brave.

My experience with the health service is they are so stressed that you have to jump up and down and say you can't cope before anyone actually listens and takes you seriously. I can generally only make them understand I am at the end of my tether by bursting into tears. There are so many people needing help that stoic coping and measured responses just don't get you anywhere.

My thoughts are with you xx

Alex Kiernan said...

Roo, you are anything but a traitor. You are making sure that your beloved is safe, warm, tended, cared for in the best possible place by the most expert people available. To do anything else would be failing him. Battling on solo - and battling officialdom and bureaucracy to boot - would put you both at risk. You have coped amazingly, but must recognise that others can take physical care of FL while you provide all the love he needs. He needs you to be at his side - not running yourself ragged, exhaustedly trying to cover all bases and being too shattered to support him and take care of yourself.

Sorry, I hope I'm not ranting, but you need to be well enough to do what only you can do - love, advocate, support - and let others do the rest. Sending love.

Alex Kiernan said...
This comment has been removed by the author.
Violet said...

You are not a traitor. You're protecting FL and fighting for him. You're being amazingly strong and are doing what's best for him. I'm only sorry that it's being made so hard for you.

Jessica Walker said...

Roo, that last sentence makes me so sad. Please try not to think that. You are doing your very best to be an advocate for FL under extreme circumstances, and this sounds like the best course of action for you both. You need to be able to spend your time together in comfort, warm and dry, so you can actually focus on each other. As always, sending you my very best. JW

andrea said...

I add my voice to those who say you are not a traitor. Your two previous posts had me despairing for your situation. Damp cold rooms are not suitable for a person in FL poor state of health. Neither is it any good for you to be struggling to do the best that you can. As the weather worsens you stand a good chance of being cut off from the outside world. Not only does that mean you can't get out but carers can't get in either. You can't keep trying to half drag FL to the bathroom and back on your own. It will wear you out and put too much strain on his body. Please cry at every opportunity and tell the powers that be that this is not an acceptable situation. As for the GP, he needs reporting in my opinion. I hope and pray the hospital visit tomorrow gets the best results for you both. A warm bed with on tap decent nurses who understand the situation and know what they are doing.

Andrea, in North Yorkshire.

Lizzi said...

Noooo - just a caring wife who doesn’t understand the system (do any of us?) and who is human and cares about her husband very much.

Your frustration is totally understandable - I really feel your anxiety - and hope that you will get the outcome that you all need.

Alison said...

You are absolutely not a traitor but I know how you feel. When my Mum went in to the hospice it was to get her off morphine as it was making her loopy, unfortunately taking her off it highlighted the fact that she was rapidly deteriorating. In the hospice she was put on steroids and better pain meds and perked up and wanted home. My Dad and I had to have words with the doctors about her coming home as we knew physically it was not at all possible for any of us to cope with. I too felt like a traitor making that decision but ultimately we knew she did not want to die at home but she didn't realise the end was so near. Hope tomorrow goes as well as possible.

Melissa said...

Roo, I have been keeping up with your daily posts and feel your pain and anguish. (I had written a lot of comments today which got wiped out so I am starting again but making it shorter.) It is so sad that "they" won't do anything until the caregiver cracks. A caregiver is expected to do so much today. And it's sad and ironic that FL perked up just as you were trying to express how out of it he is most of the day.

Please, please, do not call yourself a traitor. You've been doing the best you can but you are not a medical person and you live in an isolated area, you need help/support to help FL. I hope you will finally get some help after this.

Sending you many hugs.

Knitlass said...

Oh! Roo - you did and said the right things. The events of the weekend have demonstrated that you cannot carry on at home without support, and since the support you have had has been zero, then you need FL to be somewhere else. Here's hoping the wait is short, and the snow waits for a bit longer.

Mags said...

In awe of what you have coped with thus far. You are an amazing wife to your FL. So glad that there seems to be a glimmer of hope that you will get the help that YOU deserve. Don't ever think of yourself negatively. Hope you have a peaceful night x

Mindo said...

What everyone else said - not a traitor. I had to fight for my father to go into hospice when everyone from the hospital nurses to social workers thought he should go home. I could see that it was the case of one department shoving the responsibility onto another, or ultimately onto me. I was adamant that he should have the best care given by professionals, with access to skilled nursing and hospice care.

You can't be expected to cope as you are, and should not have to.

Athene said...

I'm saddened that you had to reach this stage, but relieved you are finally getting some help. You're not a traitor. Of course FL wants to remain at home but he isn't the one having to cope when he falls over/out of bed/needs urgent care - you are. Being at home to him means carrying on as normal, not lying in the floor in a cold room while you wait hours for help to arrive.

The hospice will give him dignity, relief from pain and hopefully enable him to be more 'present' and you can be his wife and loving partner again, not his carer. It's not an admission of defeat to ask for help, it's a courageous act in support of FL.

MCKGJK said...

Not a traitor. Never. In my experience, the healthcare system doesn't kick into action if the patient or the carer appear on the surface to be coping. So you have to shout and stamp your feet to make them understand that despite what they may think, you need help. You deserve help and shouldn't feel guilty about that. You can only do what you can do. None of us are superhuman.

Donna Hensley said...

Ditto the other comments! You are coping the best you can and making the best decision in the circumstances! Stay strong!

Denise said...

Oh no, honey, not a traitor. You are NOT. You need help just as much as FL does. It's okay to say so.

Rosesred said...

The feeling of being a traitor might be more a result of exhaustion than of any of your actions. I've never met a main caregiver who does not feel guilty all the time about being 'not enough', regardless of what they are doing. Saints probably felt guilty all the time. This feeling is not a reliable source of information. You are doing the best you can, and you are not taking your frustration out on your first love, but direct it instead to the people who should act. That's pretty much the definition of a responsible course of action.

Jennifer Hill said...

So pleased that 'things' are finally moving and hooray once again for the hospital Macmillan nurse. Of course you ARE coping, by doing all the right things, this being the latest. A sad but all too necessary course of action, for which you can't possibly blame yourself. Jen

Sadie said...

Oh Roo. You're not a traitor. You're an incredibly brave and strong woman who is doing the best she can to ensure that life for you and FL is as easy and as comfortable as it can be over the next few weeks, and taking steps to ensure that you don't end up in a situation where FL desperately needs medical help which physically can't reach him.

Sending you both love and strength.

Wakeymakes said...

What would you hope FL would do for you? Love cherish protect. You are doing all that. You are a good wife, friend and carer for his and your health and dignity. No one could ask or give more. Virtual hugs K xXx

weegie wummin said...

Oh darling dont ever think traitor...your thinking only of him and being realistic. Thinking of you both huggs Ellie

Mog said...

Roo, you are not a traitor. You are asking for the dignity FL deserves. The dignity you deserve too so you can come to terms with things, and be his wife, not someone utterly shattered by having to everyone else's job. You can't do it alone. No one can do that without the added concerns of geography, weather, and everything else.

Be kind to yourself. You deserve support as well. You deserve a medal. X

agirlinwinter said...

You are NOT a traitor. You are trying to do your best in an impossible situation. I hope you get the help you need. I don't know you, but I am thinking of you x

Joyce Ward said...

I read your posts every day and I am amazed that you have held in there this long. You are not a traitor. It has sounded like it was getting to be a dangerous situation for both of you. Perhaps you might not get what you want, but what you both need. Some comfort and support. My brother died from liver cancer 5 years ago. He did not want to be in the hospital and was furious with me. I had just recently been diagnosed with post polio syndrome and newly using a wheel chair and working full time. While I wish I could have kept him at my home, it just wasn't possible. He was well cared for in hospital and I was there every day. My only regret is that he loved the outdoors and once in hospital, they wouldn't let him out for even an afternoon. I wish we could have at least taken him outdoors for awhile. But, that being said, all we can do is play the hand we are dealt, with love and do our best. I hope that a bed becomes available for your beloved soon so that you both might get some rest, TLC and comfort. Sending hope and best wishes your way. You are not alone.

verykerryberry said...

Go easy on yourself Roo, you have been pushed to the edge of sanity with the all the different events. You always come from a place of love, no one could ask for more. xxx

Brenda said...

You are doing an amazing job in spite of tremendous burden and adversity. You are a hero for how you have managed so far. I hope you can see all of the good you have done and the impossibility of going forward without support from hospice. You can become a wife again and not be a carer. You are doing the right thing!

Stitched Together said...

I'm so pleased things finally seem to be moving. The complicated care system in this country, marvellous though it is, is not very joined up at times and it is often the burden of managing the situation is left in the hands of the patient or their loved ones. I'm so very relieved that you managed to finally get someone to understand that you are so close to cracking. You should not be expected to manage FL's care to the extent you have been doing with so little help.

If you get him into a hospice or a hospital bed you can concentrate on him and you and not the behemoth of task of managing his care by yourself whilst navigating the NHS. You did absolutely the right thing. You can stop panicking about the details and start to prepare yourself for what comes next. FL deserves the best possible care, but so do you, and don't forget that.

thornberry said...

Oh Roo, I think that everyone before me here has already said it - you are not a traitor, no matter how you feel, and you are doing your absolute best in an impossible situation for both you and for FL. I have to admit that I am more than a little horrified on the way that the health system hasn't assisted you both.

Your writing here has been so eloquent. Maybe one day your experiences as documented here could be passed on to the relevant health authorities, in the (vain?) hope that they may learn from it.

Take care of yourself, and be gentle to yourself.

sewalign said...

You are a wonderful wife who loves her husband and wants the best for him which includes a warm and dry environment that he needs. Your husband cannot be cut off from healthcare professionals and you cannot be left to cope on your own during the harsh winter. God bless you.

Heather said...

At last you are getting the help that you both so desperately need far from being a traitor you are a tiger in support of your husband, and a loving wife who WILL get him warm, comfortable, cared for and calm. I hope that tomorrow goes well.

Jodie said...

NO! Not a traitor. You are simply at the limit of what you can handle in the place you are at. Don't feel badly - if you and FL were reversed I hope that you wouldn't be betrayed. Because you are right - the weather might get worse, cold, wet, snow and you might be cut off and..and..and...
I'm glad that you've got some support (hopefully) set up for tomorrow. Thanks for keeping us all in the loop. I'm thinking of you both,

Charlotte Tilley said...

Xxx

Charlotte Tilley said...

Xxx

Lorna A said...

My god woman, you are not a traitor.I have been worried sick about you both, not commenting because I didn't have anything useful to say. You should have been offered proper help when FL was discharged, I would have been round in an instant if I lived closer.
Remember Roo, you would be no use to FL if the stress had taken you out.
You are both in our thoughts. X

Andrea said...

Agree with the others that you are in no way a traitor! You are doing exactly what needs to be done. I don't know how you are coping, what on earth is wrong with your medical service? I hope things get easier soon.

Emma said...

Dear Roo,
What everyone else has said.
{{{hugs}}}
xxx

Redhedhels said...

As so many have already said you are not a traitor but a woman in am impossible situation. You must have help and support, for both your sakes and I'm glad that people are finally listening. Hold on to your hospital Macmillan nuts. He seems to be the only person able to kick the right arses hard enough to make them shift. Hugs, love and thoughts all heading your way.

Redhedhels said...

As so many have already said you are not a traitor but a woman in am impossible situation. You must have help and support, for both your sakes and I'm glad that people are finally listening. Hold on to your hospital Macmillan nuts. He seems to be the only person able to kick the right arses hard enough to make them shift. Hugs, love and thoughts all heading your way.

poppyinstitches said...

please don't feel like a traitor, you have done so much - there should be more help being put in place for you both. Thinking of you x

Lynn said...

No, no, no, you are NOT a traitor! You are fighting hard to make sure the man you love gets the best possible care and is safe, warm, clean and dry. It cost you too much to admit that you cannot give him those things for it to be the act of a traitor. It is a brave, unselfish act of love.

Helen // Grosgrain Green said...

I always read but rarely comment, but you are absolutely not a traitor. You are doing what is the best for FL. I'm appalled that the professionals are making this so impossible for you when you are already in such a difficult position. I hope that the situation improves this week. You are admirable, and so impressively coping, but you are human. X

Joan said...

You have to be the strong one (and you are doing that wonderfully) for the both of you. It is the kindest and most loving thing you can do for FL now. Even if he can't always see it.

P.S. Your Generalist is a disgrace.

Sarah said...

Dear Roo, you are not a traitor. You are, as you have always done, a wonderful advocate for FL. People forget that it is just as difficult to be the carer as the patient. You need help and bravo to you for getting it!

colleen said...

Please don't feel guilty. You are not being weak or underhand. This is something you have talked about with FL. He knows that you can't risk being cut off without help, care, strong hands, appropriate medication, experienced support, comfort, peace of mind, all things that you both need at hand. Get that sorted and it should help you both to negotiate the time ahead more peacefully. Hoping that things will settle down soon.

ambermog said...

My dear Roo you are doing what you have to do to help the man you love and indeed to help you. As you know we are going through similar and your journey together has echoed ours in many ways. Sending much love and strength for you both from Mr Mog and I . Thinking of you xx

clb said...

You're a total bloody hero, and absolutely not a traitor. But you're also not a weightlifter, and he is a heavy chap who can't bend his feet and could easily fall again, with maybe not such a lucky landing next time. You need extra carers who can lift him, and if you can't get them to come to you then you need to get to them, asap. And the hospice is warm and dry and will have superior pain control. And maybe when FL is better sorted out with that, he will even approve of it.
Many many heartfelt good wishes from another longtime reader (who could cheerfully come and thump your GP!)
Clary

Sox said...

Do not feel like a traitor. You are doing what is best for your FL given your rapidly changing circumstances. In order to look after FL you have to look after yourself. If you were to hurt yourself, the outcome could be dire. It is better to get things organized while you can than to wait for a bigger crisis.
I've lurked your blog from the beginning and I have been feeling for you the last few weeks.
Take care.

Stephen Greene said...

Suppose the weather causes a loss of power and heat and you're unable to carry FL from the house to the car. If you become trapped hypothermia becomes a lethal threat to both of you. A traitor? You're the only one in FL's life with the strength and courage to do what is best for him.
Blessings Ms. Roobeedoo.

naomi said...

i've read your blog for such a long time now and my heart goes out to you and FL. You are anything but a traitor, you're doing the very best you can in the most difficult of circumstances. I'll continue to read your blog and I hope that everyone who is supposed to pulls together to give you and FL the support that you need, and deserve

K.Line said...

I understand that you feel like a traitor but - as no doubt everyone before me has said - you are not a traitor. You are doing the wise thing, not only for yourself (and you are just as important as FL) but also for him. He needs constant care from professionals so that you can do YOUR job - being his greatest emotional support and love. You know they say it takes a village to raise a child. It takes a village to care for someone at the other side of life. That's how it is. No one can do everything. Just do what matters. xo

SewTypical said...

NOT a traitor! Finding a safe situation for him is the best thing you can do for both of you. FL is so lucky to have you.

Charlotte said...

Oh Roo -- what a frustrating, humiliating day! I'm so sorry it came to that as you had to make it clear that caring for him at home, alone, is not going to work. If the hospice is a safe place, then that's by far the best solution, and it sounds like you're making that happen. Try not to beat yourself up with traitorous feelings -- they're totally natural, but also something to try not to pay too much attention to -- we none of us feel we can do enough for the people we love. But you can't be stuck out there all alone on that property with no help, not with floods and snow and winter and bad roads. You just can't.

seashell bluez said...

You are not a traitor when you ensure that he receives the MONITORING and CARE that he needs. If he were to get up and fall in the middle of the night during a snowstorm, and he were to break something, what would happen? I think you are being very prudent. Obviously, the people who should be monitoring his condition have been doing so only sporadically. In a hospice, he will get that regularly and will be given the level of pain meds he needs as soon as he needs them. He will also be far more comfortable than at home.

You know all this. You are just feeling guilty and frustrated and helpless. You get to feel all of that in your situation. You are in a very rough place right now, and you know you have many decisions to make in the near future. Go easy on yourself and accept that you are doing the very best you can for your husband.

JAG said...

You are not a traitor.

You are an amazing advocate for FL's safety

You are loving.

You are caring.

You are looking out for FL's best health.

You are doing everything right.

Also, please keep in mind, that any decision you make now or later doesn't have to be final. You have a better idea now of the resources available to you--such as they are--and all your future decisions will be more and more informed.

You are wonderful.

Eileensews said...

You are not a traitor. Not at all. Hospice can take care of the meds, bathing, bath rooming type of tasks. You will have more time and energy for the loving, talking, hand holding , reading to , playing his favorite music CDs type of things.
You are a great advocate for your loved one's needs.

lilysgrannie said...

I'm not sure how hospice works in the UK but I had experience with it in the US. I oversaw the medical care for my father and my aunt after they were unable to care for themselves. My father and aunt lived in skilled nursing centers the last month of their lives. I had to ask the doctors if I should call in hospice and in both cases the answer was YES! Their doctor's never suggested it to me. I was not familiar with end of life issues and was unable to physically care for them properly. In the case of my aunt she lived 2 days after hospice was called in and my father lived less than 12 hours! This always bothered me because I feel like the medical profession should have suggested hospice to me earlier. Perhaps the quality of their lives could have been better.

As a result of this I really agree that we are an advocate for our loved one which is very different that personally providing all the care for them. I also learned that trained strangers can often get them to do things they won't do for us.

Minnado said...

Please dont think yourself a traitor, you are not. I know how hard it is to convince health professionals when the patient presents well, and in contrast to a few days before. I am sending you hugs and hope. xx

Isabella said...

You will feel far differently when you get to the hospice, I promise. It will be safe and the staff there will take the burden of nursing care from you leaving you time to actually be WITH FL, talk, hold hands, be supportive. His pain will be controlled properly, he'll be clean and warm and fed, he'll feel better for that and he'll probably get more responsive. No it's not what he wanted. But it's simply not possible to care for a sick dying man in a cold wet house that is too far for the health support to reach to assist you and when you could be cut off any time. You've got to do what you can do, not try to do the impossible. Don't waste time feeling guilty about this, it really is for the best.

Sewing as Therapy said...

Oh Roo, you are not a traitor for wanting these precious last days to be spent with FL as his loving wife and partner offering support and company while he is cared for with dignity and kept as comfortable as possible. That is what you both need, not for you to be struggling trying to do everything without any proper help! The professionals should be supporting you both. Im furious for you both from afar.

Wishing you the strength to argue until you get the services you both need, so you can make the most of this precious time, and when his time is up, you will remember these last weeks positively!


Hugs hugs hugs.

rosylea said...

What everyone else has said. You just want him to be safe, warm, dry, and as comfortable and free from pain as can be managed. If professionals could do that for you both, you could be free to perhaps have richer and less stressful time together during this period. In no way is wanting that a betrayal. Wishing you both well, R

Sew little time said...

You are not a traitor at all. You want the best for FL and have had to admit to yourself that you arent able to it on yoir own in your current house. Really hope someone follows through on their promises this time. Much love. X

Jen Arnall-Culliford said...

Sending all good wishes and prayers from Somerset. Not much else I can do.
You've inspired me to do a dressmaking course by the way. I bought a pattern and fabric yesterday, and am incredibly excited to start in February. You make the most beautiful wearable garments.
You may not have friends physically there with you right now, but there's an army of us online who are with you in spirit. x

Sarahel said...

I read this last night. It made me so sad. You've been through so much in the last while, and shouldering it alone must be so hard. Don't doubt your instincts, you have to make the decision for both of you - although it sounds as if FL, at least yesterday, agreed with it (when awake and alert he must be very concerned about the burden on you). So many people speak so highly of the support hospices provide I hope a place is available very soon to lift a little of the load for you both.

Kate Babbitt said...

I've never commented before, but I want to reiterate what everyone else is saying. And to say that my thoughts are with you and FL from across the ocean. You're a fierce warrior woman, and the events of the last day only prove that. I hope that all the virtual love and support and encouragement is providing a bit of comfort for you. So many people are thinking of you and sending the best kinds of thoughts your way. And you're not a traitor. So not a traitor. You're a fearless advocate who will clearly do anything to see that FL gets the care he needs.

Lucy said...

Others have said this and more but I am going to repeat it again because you need to hear it as many times as your brain thinks it: you are not, not, not a traitor.

I am so sorry that it took a frustrated rant to get the message across, because don't tell me this is the first time that the system has failed someone...

Laura said...

"And FL agrees that this is the only possible course of action."
Because it is, which doesn't mean it's what either of you want, or that it's the sort of thing either of you expected. Right doesn't always mean good, but it sounds like you're both finally going to get the relief you need.

As everyone has said, you're not a traitor at all (you can't be, if he agrees), but it must so hard not to feel that, even when you know the facts. Hang on in there, because it sounds like the cavalry (or MacMillan, who sort of sound like the same thing :)) is on the way. I hope the nurse who came last night was actually of use, and that all has gone smoothly today. You're doing all that can be done - more than many would manage - and you can hang onto that.

Much love as ever xxxx

Roisin Muldoon said...

What everyone has said above is true. It's a tremendous act of selflessness, what you're doing - not just the caring, but ensuring that the right decisions are made for FL's safety and to give him the best quality of life he can have. It's bound to be very hard for you both to make that decision but, as his wife and his carer, you're doing your loving duty in advocating for him in this way. It can't feel good, but the right decision often doesn't.

I don't generally comment, but I'm reading and wishing all the very best for you both xxx

CarolS said...

Moved to tears again tiger, in the best possible way, lady. I hope you can take all the above assurances that you not not not a traitor. It's not your proper role to be the only care in this scenario, first and foremost you are wife (lover, cherisher, best friend) and can be a better one without the huge worries you are having to carry just now.
I hope to learn you are staying beside him in safer warmer medicalised more companionable environment next time you post.

Nita said...

If I was there I would give you a hug and make you a cup of tea. Then I would sit with my knitting beside your belived FL while you took a nice long walk and had some time to yourself. And then I would do it again the next day. Your readers are all standing behind you.

Carmen Bouchard said...

No! Nope! Not! You need the help. Be strong and assertive in asking it. We are with you in thought but it's not going to help you. Much much love, you are doing the right thing.

MaryinTN said...

No Roo. You are NOT a traitor. You are a fabulous, wonderful, loving, courageous, caring wife who loves her husband beyond words and that you need the help you have been trying to get immediately rather than later. I do not know how you have made it this far, but Roo, you have a spine of steel! Hugs, much sympathy, love and prayer for both you and FL. Praying FL gets the hospice care he needs and you get some help. That GP is a total disgrace to the profession.