Making the most of it

So sorry to hear your sad news, my thoughts are with you and your family xx

Edited by member 22 Mar 2019 at 10:48  | Reason: spelling

Thank you so much to all of you - what kind words and strengthening support from you all.  We are doing OK.

Devonmaid and Kentish - I think of you as my sisters in arms - thank you for your insight and understanding.  I can most definitely feel the love across the airwaves.

Kentish - hoping you've had some reasonable days.

Teacups

i am on my retreat in Portugal and found a small amount of internet to let you know that you remain in my thoughts as the days pass. you will never be alone here. 

Kentish,

Is it too much to ask that the Enzo is making a difference? I sincerely hope so.

with love from the juicy oasis in Portugal, where Brexit and cancer doesn’t exist.

with my love

Devonmaid xxxx

N’s upward swing lasted a few days, results back today (26/3/19) show a severe infection, probably uti, and very poor renal function, probably the demeclocycline. So back on co-amoxiclav and stopped taking the demeclocycline. N also chose to stop the enza , he was having trouble taking them and felt it wasn’t really going to help. Who knows? So his renal function is expected to improve and they are hoping to get on top of the infection. However, N was asked if he would want to have intravenous antibiotics and Iv fluid if the oral antibiotics didn’t work. N has chosen to not go back to hospital, of course he may change his mind but at least I know what he wants at this moment in time.

The plan is for N to come home again, I don’t know how many times “this is not a long term facility” has been said but it’s clear they think he has long enough to be able to come home. I cannot put into words how distressing this is. I’ve talked to the kids and explained that I will do the best I can. But this feels like a hopeless situation.

N wants to come home and he can’t stay at the hospice, there are nursing homes locally but some of the hospice patients have been in them and had to come back to the hospice because the care home couldn’t cater for their medical needs. This does not inspire confidence and N asked me not to put him in a home.

I have asked for night care to be added to our package and when this is confirmed he’ll come home.

28/03/19: N has been about the same for a couple.of days, taking the antibiotics and just getting on with it really. He’s very weak and a bit confused at times but on the whole he just sleeps and chats a bit when he wakes up. I know that the sodium will be falling and me and the kids are making the most of lucidity while he has it.

30/3/19: N is ok but very tired, finding the energy to drink his coffee is an effort and he just wants to sleep.

31/03/19: A little better than yesterday but much the same, the kids came up and we watched a bit of a film for an hour together, they are coping as well as can be expected. Son finding it hard to concentrate on his A levels so I have asked to talk to school to see what they can do to help him through these last few weeks. He flatly refused to talk to anyone at the hospice again but was open with me that he is struggling. I asked a social worker for guidance on what to say, I just don’t know what to do for the best, I certainly don’t want to say the wrong thing and make it worse!

01/04/19: Things are much the same. A little more sleepy.

02/04/19: Just a bit more slurred than the day before. Set to come home Thursday, he’s looking forward to it. It feels me with dread, of course I want him to be at home and for it to be the same as the last few days but the anxiety I feel over losing the safety net of the doctors and nurses is almost overwhelming.

03/04/19: Much more slurred than earlier in the week, a bit more confused and started talking to himself and staring into the distance again. Finishes antibiotics today so probably not infection, probably sodium.

Son has broken up with his girlfriend of a year, He said he’s been unhappy for a while but we’ve had such a shitty few months that there was never a good time to break up.

And to top off the day, no night care...got to keep a diary to prove he needs it. Other options presented were, pay for it privately, which I’m willing to do but how will I know if they’re nice or not, got to have faith and I’m sadly lacking in that at the moment. I asked about Marie Curie referral and the answer was that they have never been allocated to our area which is probably down to funding. Or ask friends and family to rotate care, poor Nigel, the only way I can see that working is to be on night duty myself and ask friends and family to sit during the day when there are at least carers to come out. Was told, you have carers 4 times a day, the morning one can sort out anything that’s happened in the night!! Sit in mess from possibly 11pm (the latest the carers come) until anytime between 7 am and 11am (the 4 hour morning time slot )? What planet do these people live on!

I send my best wishes in what I realise is a very difficult situation.

Hugs.

I am so sorry to read of all your going through.  It’s atrocious timing for your son with his A levels coming up.  As well as the school submitting a request for special consideration to the exam boards, if he is planning to go to university, call the admissions team and explain what is happening.  They can put a flag on his application and if he marginally misses his required grades, they may still admit him.  I’m a secondary school headteacher - send me a message if you need any more advice on this.

N's preferred place to go when the next deterioration occurs is the hospice, however if they do not have an available bed it is either, stay at home (this will depend on the type of deterioration ) or go to hospital. Once in hospital he is no longer a priority for a bed at the hospice. To get back on this merry-go-round is what makes my heart thud, N's track record for admission to hospital is what makes me nervous, the physical and emotional caring for him is the easy part but the medical care is out of my hands and very much always done in a crisis. I think it is anticipatory anxiety, which is what I meant by "get a grip" it hasn't happened yet so I need to try and settle that anxiety instead of letting it be overwhelming. It requires a conscious effort to stop the circle of thoughts going around in my head, it's just this time seems a bit harder than before.xx

Anyway, p**s poor communication again....the local provider of services MCH, do indeed provide night sitters and a referral has been made and hopefully at least 1 night will be in place for next week. Continuing Care wanted the diary etc but it is the CCG for our area who provide the carers not Continuing Care. A little infuriating to say the least! I can't be the first person to have asked for this service..I would have thought both Continuing Care and the hospice team would have known. I have spent a fair amount of time alternately worrying and arranging an army of friends to take turns. ..all unnecessarily, hhhrmmmph.

And so he is home, I have administered optiflow bladder flushes, various controlled narcotics and also a fragmin injection, changed him several times, used a slide sheet on my own and tried very hard to squash the palpitations in my chest. We have watched the pilot episode of a series called the umbrella academy, weird but we liked it, and eaten Maccie D's with the kids. We will be ok. I hope he bl**dy sleeps!!

But no sign of any carers, I truly cannot be ars*d to deal with it tonight, I shall ring them in the morning to find out what's happening.....ffs, why us???

Bri xx

1st night sitters will be next Wednesday 10pm-6 am, carers have also been doubled so 2 come 4 times a day.

Chris, he's so deaf he doesn't need an ear plug! We live in a no through road, so only the sound of people parking their cars or trying to turn around...the noisiest thing is his air mattress!

Xxx

Best wishes ,thinking of you and your family.

Debby

Oh, Kentish, everyone is right, you are doing a magnificent job.  Glad you had a quiet morning - coffee and listening to the kids getting ready sounds perfect.  And a night's sleep (at least for N, but did you keep waking and listening??).  And yes, I know why you feel the caring is part of who you are, and of who you and N are.  But I also know how hard it is.  The physical stuff is one thing - your comment about the slide sheet took me back - I never managed to do that on my own.  The mental stuff is another dimension entirely - the never ending worry about every decision.  Apart from the carers what other medical support do you have coming in - district/community nursing?  palliative nursing? sympathetic GP?  They can all make a difference in making you feel (at least temporarily) a little more in control.

I am sending my usual love, hugs, and am here with a sympathetic ear if you need one.  And I am wishing you more snippets of quality time with N at home, with the family.  Hold his hand as often as you can, and let that imprint on your brain.

I am doing OK - grown up granddaughter is with me until next week, and we are enjoying getting out and about.  Still numb, I think, and may fall into a hole after that.

Kentish

You are one of our real troopers, even with all the issues you are dealing with you still give consideration to other members. Keep going gal.

Thanks Chris

I remember that we wrote to our son's school as he was doing gcse's at the same time as his grandfather died of pc. He coped and got pretty good results and the school were very supportive . Children do seem to cope although you always worry about them so much.

I can't tell you how much I admire the way you are coping with all of this - sending prayers for some good sleep to give you strength for each day. x

Don't know what to say Kentish.   Just sending hugs x

I would second that, as I am sure many other people who don't post often will. It is hard to find the right words, just know there are many people out there sending love and wishing we could do more to help.

Thinking of you and sending hugs.

We were unpacked in time for a spot of sweet and sour chicken from the kitchens for lunch. He only eats a tiny bit but enjoys it still, he swings between disorientated, fully conscious, very sleepy/fatigued and vacant. We watched the last episode of a TV series we had been following. That felt like a mammoth achievement to have got to the end! It's so hard to justify him being there when he is lucid and I wonder if we could have just manged a few days more. But this time is different, we had several people advising us that N would be able to be more comfortable if he returned to the hospice and we were able to do this in a calm and planned way, so different to our other experiences.

Going to try and get some sleep. It's hard to stay asleep when he's not here but I wouldn't sleep if I was with him anyway...

I had an opportunity before he came home to talk to family support about how I felt, we went through how sometimes the right thing is said at the wrong time, it's so easy to be hyper sensitive but that sometimes the professionals don't recognise this is how you are feeling in the moment.

I think I just don't want to be left with lingering regret, I need to feel in myself I did everything I could for N.

Xx

Hello Kentish

i feel very sad that N has had to go back in but I guess the week at home will go down in the memory banks as a time of ease and love and homeliness and that’s a lot to be grateful for at a time like this. It feels from your post that the time is fast approaching when things are going to get worse and the advice from the professionals seems to point this way. You seem very accepting and I think from being here so long, that this is what happens. I hope I can be the same when the time comes, I’m very afraid of panic and scaring my girls. 

I think of you every day, even though I don’t always come in to the forum. You are so brave and a wonderful wife and mother. I hope your strength will carry you through.

with love

Devonmaid xxxx