AM I THE ONLY CARER WHO NEVER SLEEPS!!!!!

FormerMember over 17 years ago

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Well here i am again at 4.30 in the morning and i can't sleep yet again!! My husband Darryl has terminal small cell cancer and, at the moment is going through a really good phase. Which, i would have thought, would set my mind at rest and enable me to sleep. But no, here i am again having had 2 hrs sleep tonight wide awake with mad thoughts running around my head!! This is driving me crazy and i just seem to be on auto pilot all the time. Darryl is 44 years old and we have been given a prognosis of a 2-3 year life span for him. I can't seem to let go of this thought, and maybe part of me can't sleep because of that, as i feel if i'm asleep i'm wasteing precious time!! Darryl is sound asleep and resting well, and if i stay upstairs next to him listening to his breathing, i keep thinking is this the last time i'll ever hear that and end up getting so uptight and worried that i find it better to just get up again. So i wander round the house do a few chores, have a hot caffiene free drink and will myself to sleep all to no avail i might add!! hahaha surely i'm not the only carer who never sleeps, or am i????? any comments gratefully recieved. Take care my friends and hope your all sleeping well. love and hugs mel xxx

FormerMember over 17 years ago

Hi Mama hen and chickies Kate and Karen

Dear Kate am so sorry to hear about your mum, and feeling for you and your dad too, know it hard cos of all your doing for your mum but you need your rest too else you'll wear yourself out!! sorry to be bossy I got the bossy talk from mum last nite so thought id pass it on to you, I hope the duracell bunny manages to pick up slightly over the weekend and like Karen said dont hesitate to ring Gp if you're more worried than you obviously already are, is the Mac nurse not 24/7? or is it bloody protocol yet again cos its the easter weekend?? its so annoying!! Here for you anytime (well as much as i can be at the mo honey, sorry!) sending you and mum and dad a huge hug lots of love teresa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Karen, how you feeling and how is that bug of yours? hope you feeling better, well down to protocol and being easter weekend I have to stick to the proper visiting hours this weekend so cant see Michaela till 2.30pm (bloody ginger haired ward manager) sorry to all gingers!!, her temperature raged all night last night so they have started her on another antiobiotic to try and get her blood levels to rise, she really is a mystery to them, find it really annoying that they waiting till tuesday to do more tests WHY??? not do them now as its obvious that what they have had her on since Monday is not doing anything? bloody bank holidays!! but nothing in significance to people on here, anyway hope you have a good easter weekend, have you got snow? we did earlier (i was going to take Michaela up a snowball) as she loves the snow but its now turned to rain!! lots of love and hugs Teresa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Mel
Hows things? Hope you, daryll, kirsty and daley are ok and that you have a good easter weekend, sending lots of love and hugs to all of you teresa XXXXXXXXXXXXXXXXXXXXXXXXXXXX

FormerMember over 17 years ago

hi teresa hun

i cant believe there waiting till tuesday to do more for michaela, poor girl she must be so peed off now bless her.
i cant even send a snowball as ours has turned to rain now, but i will send her a cyber one!!!!
and cant believe you have to stick to visiting hours for god sake how rediculous!!

gingers .... lol you are funny.

i so hope michaela feels better soon
i bet you are shattered mate, hope you get some sleep.
did angie have a good birthday? and hope samuel is doing well.

hope you manage to relax a bit this weekend, and i know its hard but try not to worry too much
sending lots of love and hugs karen xxxx

FormerMember over 17 years ago

Dear Karen

I dont know about Michaela feeling p'd off i am as there a lot of washing up that needs doing so Ive told her she best get better very soon!!! I do understand that Michaela isnt the only patient in there but its just so frustating and the fact that as her mother Im not allowed to be with her out of visiting hours is absurd especially seeing that she is in her own room!! but thats protocol for you was going to add something to that but think if I did it would warrant me a ban!!! She got upset yesterday as she'd dreamt about Dad and imagined him sitting in the chair next to her bed so we had a bit of a cry plus her door keeps opening on its own, twilight zone me thinks!!

Angie enjoyed her birthday as best she could but she got upset as well as 6weeks to the day with Dad and the 1st without him and what with Michaela as well and obviously she is very hormonal having just had Samuel, couldnt believe how much he has changed in the last week can definately see James in him and also Dad, he has his lips and when he sleeps he crosses his hands like Dad used to but he is even more gorgeous than when I last saw him!! didnt get any pics but when I do I will send them.

Mum sent me to bed last night at 11 as I'd fallen asleep in the chair and I slept through till 6am then bless her she bought me a bacon sarnie in bed!! so feel bit more refreshed today unlike Kate bless her, hope duracell bunny picks up. Well sending you lots of love and hugs Teresa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

FormerMember over 17 years ago

Hey chicks
Thanks for your support, Firstly sorry Teresa you must be worried sick so Im sorry to heap my problems on you,hope you get some answers and Michaela will be fine, also Karen chick sorry I am bringing back unhappy memories for you and thanks for all your support too. Its good to have friends like you and Mother Hen if you are reading this you cant be on line 24/7 ok ??? xxxxx

I keep asking myself am i over-reacting due to being worn out, things seem a million times worse when tired, but dad is agreeing with me, your right Teresa everything has stopped for Easter? Mac nurses back On Tues ?? Mum has had diarrhoea since Tuesday, I know this is due to chemo but it isnt getting any better, They prescribed immodium and we are now on the 3rd bottle? The dietician changed her food from ensure on thurs to one prescribed to patients with chrones disease and chronic diarrhoea ( name escapes me) but its meant to be gentle and sods law its diet ,so far less in calories so said give her more cartons and the dieticians will also be back Tues ? Meanwhile mum is loseing shed loads of weight is sooo weak and deteriorating and this is with the 20% reduction. Mum is drowsy but coherant so not dehydrated and GP said he wanted to admit her, mum pleaded and he said ok cos nothing would probably done except a drip till (.as there is no sign of infection or a bug)........You guessed it Tuesday aaaaaahhhhhhhhhhhh
Im at my wits end without being too graphic I have had to put plasic sheet on the bed, the washer has been on non stop poor mum has no control. thank god I got the commode, if she makes it, and I just want to cry with tiredness, you know when you feel sick with tiredness? well I keep wretching and im not usually quesy ive worked in a nursing home, oh god I am waffling
Her next one is april fools day !!!! Im so scared she cant lift a feather and she should be picking up

Tuesday seems so far away, what do I do chicks,motherhen? ( made myself cry now)
Loads and loads of love
Kate xxxxxxxxxxxxx

FormerMember over 17 years ago

hello kate my hunni
i know this is all so very hard, everything your saying is what my poor mum had too, my heart is breaking for you both its terrible to see what our loved ones have to go through mate, and they dont like to keep going in hospital do they? bless her!!
i know its hard hunni, but your doing everything you can and if anything gets worse dont be scared to phone docs or hospital again.
please dont worry about bringing back horrible memories, at least i can understand what your'e going through, and i am here for you for sweetie.
my mum also had the toilet probs and it took ages for them to sort the right meds out, but they did to manage help with it.
the tiredness and the worry is awful hunni, and you feel so bloody useless and helpless too dont you? but your doing an amazing job in an awful situation.
i dont know what else to say, just if your so worried or things get worse, i would phone and ask for advice, i was an expert at phoning mate, but if it puts your mind at rest a bit till tuesday then all well and good. why does everything go on hold for bank holidays? bloody rediculous.
sorry i'm not much help, but i am a good listener babe
love to you, your mum and your dad
speak soon
love karen xxxx

FormerMember over 17 years ago

hi teresa chick

hope your ok and feel bit more rested after your better sleep last night.
tell michaela to hurry and get better as she will have tons of washing up to do lol
cant understand why you cant go and visit when u like as she got her own room, and especially with it being easter, bloody rediculous.
i bet your dad is there with her, esp as door keeps opening, how lovely to know hes there eh babe???
i can understand angie was upset on her birthday, i still cry and especially on special dates, this grieving journey is awful and one you cant explain unless you have lost your loved ones.
i bet samuel is getting more gorgeous bless him!! you and poor kate are having an awful time at the moment, my heart is aching for you both.

i have waffled on now, you take care and hope you sleep ok tonight
sending lots of love and hugs, karen xxx

FormerMember over 17 years ago

hi mama hen mel

i hope everything is ok with you all, and that darryl is still feeling good.

have a good easter tomorrow hunni, and dont eat too may eggs lol

sending lots of love and hugs

chicky karen xxxx

FormerMember over 17 years ago

My dear Karen,

I have just logged on and yet again have had to catch up with everything that has been said.

First i would like to thank you for being there for chickys Kate and Teresa, as they go through their difficult times this holiday, you have been very kind and supportive to them so i officially announce you as the surrogate mother hen!

You have made me very proud of you, and it's so hard isn't it when people are going through hard times, which are often distressing to try to know what to say?

But we do our best babe to be there and sometimes just listening to peoples worries is enough to make them feel better, but you have done a good job of supporting the other chickys which i'm sure they will agree with.

You are such a strong lady and amazing as you have been through so much pain yourself, but at least you can understand how Teresa and Kate are going through.

I hope you have a lovely day tomorrow with your boys and hope they don't wear you out too much. We've nothing planned just starting to dec the living room mon so sorting things out and be busy moving furniture tom.

You take care and thank you for today. Take care babe hope to hear from you very soon love and hugs mother hen mel xxx

FormerMember over 17 years ago

My Dearest Kate,

Hello my little chicken! ans first i feel i will say i'm sorry i wasn't logged on earlier to be there for you. But i am glad Chicky Karen was there and i have now officially appointed her surrogate mother hen! What do you think?

I'm so sorry the duracell bunny is not doing so well, and babe i wish i could be there with you. I know you're so worried and i can understand that, and i also know that the bunny doesn't want to go to hospital, but babe if you're really worried and she is in loads of pain then please ring the chemo numbers you rang last time. They will help you and if she has to go back in then so be it, because it's not fair on her to be in such a state and in pain. They do have cover at weekends and holidays so she will get treated i'm sure, although it probably won't be by her usual onco, but they won't just leave her in pain i promise.

One of the reasons to ring the chemo leaflet was if the patient has bad diahorrea, so please ring them for advice. They will suggest something i'm sure. Flat cola is good to help to stop the diahorrea, as Darryl had that problem at some point after chemo and the chemo dept recommended that. Not sure if your mum is able to drink that though?

My heart goes out to you and i know how distressed you must be feeling sweet, but please don't just suffer on your own you get some help cos you definatly need it.

Sweetheart you must be so shattered with the lack of sleep and so much worrying but please remember we are here for you always and forever through the good and bad. United we stand and United we fall, so we are here for you forever! Sadly for you, you don't get rid of us that easily! lol

Let me know what happens and i hope all works out ok for you and your mum and dad. Take care sweet, love you loads love and hugs mother hen mel xxxxx

FormerMember over 17 years ago

My Dear Teresa,

I'm so sory i wasn't about my little chicken when you needed a chat.

I have just logged on and i'm glad that Karen was there to support you so i have appointed her the surrogate mother hen! What do you think?

It must be very hard for you to be away from Michaela and i totally understand that! But she will hopefully be home soon babe then you can get on with spoiling her at home! I do think it's bad that you can't visit her outside normal visiting hrs as i used to visit Darryl outside of visiting hrs but sit in the day room or draw the curtains around his bed. I suppose diff hospitals have different protocols. But seeing as Michaela is in a side room can't you just sneak in and draw the curtains i know i would? Then if any staff asked why you was ther you could say Michaela rang you and was very upset at being on her own away from you so you couldn't just leave her upset! I know it's a little lie but i'm sure if Michaela backs you up they wil give in as not helping her being on her own and getting upset, which just will cause her temp to go back up. Be strong babe, and even if you get looked on as a pain in the bum at least you're with your baby!!!

I don't suppose i'm being much help really, but i know what i would do if it was Kirsty or Daley in there they wouldn't get rid of me!!! I'm a very determined woman when i want to be!! Maybe i should come up with you and give them what for, i'm sure they would leave you alone then! lol

I know what you mean by saying that when your kids are away on holiday or with friends that you don't feel the same as when their in hospital, as it's a totally different situation. At least when they are on holiday or with friends at least you know they are well and ok thats the difference.

I'm here for you and support you 100% we're here for each other, all of us, through the good and bad, in sickness and in health forever(sounds bit like wedding vows then!!!) Maybe we should all get married to each other!! lol oooohhh eeeeeeeerrrrrrrr!

You keep smiling babe and if you are asleep i hope you are sleeping well love hugs and big kiss love mother hen mel xxxx

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