What happens to a carer who is emotionally drained. Tired of sleepless nights. Tired of keeping an ear open for when he starts to move. Wondering if he is asleep or will want to get up. Will he be in pain - maybe just a trip to the loo - maybe a drink. Pleade make it a short trip i am so tired.
He asks if you are awake. You want to pretend you are asleep. You are so tired.
How long since the last time he wok you. It seems only seconds. You just want to sleep.
You hear yourself answering yes - i am awake.
Im huring he says. My tail and all down my legs. Really hurting.
You know he is realy hurting. he told you seconds ahgo.
ok ypu hear yourself saying again. would you like something to drink. maybe a hot water botle. shall i put the telly on quietly. good to distract you.
Can i have a pain tablet and a drink o milk.
how many times has he asked that same question tonihjt. 6, 6 or was it only 3. i am tired.
im sorry but you cant have any more pain meds but i can get you some milk. you esn it warmed.
but im hurting really hurting. his soft voice is building now towards a shout. maybe he thinks by shouting at me i will understand better.
now i am awake and any though o a short trip anywhere has gone.
I fell his arm strighten bu his side. i knw that sign.
come on bitch move. i need pain mdes NOW. call yourself a carer move you fat idle bitch. i move cos i always move. i find my slippers and dressing gown as the house will be cold and i am likely to be up for a while.
he shouts again - louder - move you frigging s;ob move i say NOW god you are your fathers daughter. no compassion. no caring. just idle frigging bitch....i am in the kitchen now and his words although still loud are hard to decipher. i don't need to know what they are. i have heard them too often. i find the time to check how long since the last meds. suddenly he is behind me. crimpled and creased in pain. i want to hug him - hold him say it will be beter soon. i don't get the chance he slides down the cupboard door with boise like a wild animal in agony.
he is on his knees banging his head on the door. the words come again. you frigging bith. why did i ever think i loved you. useless fat bitch. get me help NOW.
THE CLOCK TOLD ME IT HAS BEEN LESS THAN AN HOUR SINCE THE LAST MEDS. HE CNT HAVE ANY MORE. HE STOPS HEAD BANGING AND GRABS MY LED. GIVE THEM TO ME BITCH. HE IS STRONG. FOR ONE RIDDLED WITH DISEASE AND PAIN HE IS STRONG.
IF I GIVE HIM MORE WILL I HELP HIM. HELP HIM TO SLEEP. HELP ID HIS BROJEM BODY OF THIS DISEASE JUST FOR A FEW HOURS SO HE CAN SLEEP.
NOW HE IS CRYING. BEGGING. MAKE IT STOP PLEASE PATTY. HELP ME. MAKE IY stop. i can't.i can ring the nhs 24 duty doc. wait a few hours for him o come out. to do what. they used to carry pethadin but not any more. to risky as they could be mugged.
the clock tells me we have bee there an hour. an hor in which he has scremed abuse at me, begged for help and then screamed some more. he is quiet for now but it wont last. it never does. i crouch down beside him take his head and cradle him. maybe just this once he will relax and i can get him back to bed. he does relax briefly then he grabs me. where are the meds you frigging bitch, slut, give them to me.
he ha got them now and nothing i can do to retrieve them. i stand up, shrug and turn my back walking towards te kettle. i need tea. he can do what he please. take the lot. i am tired. so very very tired.
the kettle boils i make my teas taking it in to my snug. sitting there in the semi dark i hear him through in our bedroom.
i go to check and he is just popping 2 into his mouth. i can do nothing. it is his choice. no pat it isnt a choice he hurts beyond any reasoning and this might help in the only ay he knows how.
within minutes he is asleep and i sit on the bed for what seems like hours. it isnt of course and only when he seems calm i move back to my snug.
so very very tired but beyon sleep. i want to cry but i dont. i used to cry for the words he used. i ignore them now.
the olies who have been keeoing away come and sit with me. the old girl thumps herself down on the fllor. old bones racjed with arthritis now. my young girl sits and puts er head on my knee. just quietly and gently. she doesnt want anything aprt from to be close to her mum.
tired so tired......
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Bananas5
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Dear dear Pat . Wha t is happening to you both is horrific. I can think what I can do or say to make this situation any better. I do know that you need help badly however much you think you can manage or whether you have been turned down before. If nothing else some respite care for either of you. Please please please don't think you can carry on like this. I think you have to contact social services or your GP and tell them what is going on and insist that at the moment you can't cope.
Oh my heart goes out to you but thats no use . Practical solutions are needed. Is there anyone close who will intercede for you ?
Pat . I don't know what to do or say. Please you must get practical help is only to allow you some peace and some rest.. How can I help except say that I'm thinking of you. Not much bloody help though.
Oh my darling Pat, it's so unfair, and so wrong! How has it come to this? Where are social services? Where is the respite care? How can it be right that someone who has their own disabilities be left to fend for the both of you. Thank heavens for the love of your collie. Please get some respite care, harang social services until they wish they were dead....you can't carry on like this. Come and stay with me for a few days, I'll wait on you hand and foot, and you'll have quiet sleep, and our fur babies can play on the moors. Come here Pat my friend xxx
i didnt mean to scare you - just giving an account of what so many carers live with.
it has been part of my life for many years now but that doent make it any easier.
it is the not beinf able to help that hurts. social works. forget them. they have been cut so far back that they hardly exists anymore. carers asessments arent worth the paper they are written on. gp dont even check my bood pressure - too busy.
we were offered respite years back - 2 days in an old peoples home for him - he was 48. we declined.
no - you really are on your own as a carer.
however the pain clinic as always really do care about him. and me. unfortuantely the consultant is going on leave next week and cant squeeze him in anywhere. pain nurse has just rung to tal with him and he was overcome. they are just so kind.
mayne i was having a dig at those who moan about their invisible iless and no one understands. we do understand - more than they ever know.
so bih group hugs to my wonderful family on this forum. i need you orrible lot more than you realise.
wow i wish you both well Paton and hope you get sometime to sleep, it must be very difficult for you both, its opened my mind to how my wife is also suffering the same as me and i hope i never forget that, pain can be very selfish
Pat I think the time as come for you to accept you need help as a carer before your health suffers. Hospices can assist with pain control best. Please believe me go to your GP, when my late husband was seriously ill my GP was very helpful when I said I could not cope anymore and his GP admitted him to hospital for care that break gave me the chance to recoup myself for the future problems to come. Even carers need respite sometimes and it is good to admit your not coping well. Some people struggle to cope with pain , it does not have to be so, it can be very lonely without any back up help. Hope you feel a little better now you have shared your experience, but you need practical solutions for emergency times. Hope you can get this soon. My thoughts go with you, but that is not what you need , a good nights rest would be more help I am sure and a little me time to relax. Let someone else take the burden if only for a short time while you recoup your energy. xxx
Dearest Pat I can hardly type for weeping - I just want my broken body to allow me to travel to where you are and do something, anything to help you. But I can't, I wish to God I could believe me.
I am here, to read, type, listen to a phone call, anything that you think I can realistically do for you.
I pray that you have had some peace since that post. You truly are amazing, I've noticed since I've been on this site how you support all of us who write on here - and yet you are dealing with so much.
Here is a virtual hug for you, my arms wrapped around you to comfort you.
With love
Shirley
X
Oh Pat,that post was a lot different to the last time we spoke, we were joking around. I really didn't relise how difficult your life is. I can only repeat what others have said there's no shame in asking for help. I'm also like the other posts that say they would love to come and help you,can you imagine you'd have a house full. Joking aside Im pleading with you to get some help Pat. In my home my husbands the carer, and I can understand anyone in pain I know sometimes I get him down,but I have my boys reminding me how he feels. Please Please Pat get some help,I think you'll have to do a bit of shouting to get heard. All my love and Big Hugs go out to you. Shhhhhh she's sleeping.
Hope you feel a little better now you have shared your experience, but you need practical solutions for emergency times, especially if there is a problem with your legs you should consult your orthopedic doctor. orthopedicsurgerysandiego.com/
Dear Pat, I'm still crying for you...I truly don't know what to say...I know I'm younger than you and in a different country (45, Australia) if you and me were girlfriend's near each other "it would be time for us to have a chat.
" Well here goes (kind voice) "you are a beautiful, wonderful supportive angel, it is time for you to rest - alone. David will be alright with someone else caring for him for a little while. Katieoxo60 told you how to get the best help for you both, please have a go at doing what she said. Do this for you, David and your collies, please. "
Paton...you are so much more than a tired carer... xo
Hello Pat, Bob here
All I can suggest at this time is discuss with your Doctor to arrange for David to be taken into hospital to upgrade his medication to a possible pump so He can self medicate in safety and a Community Nurse can begin to keep an eye on him
You will need respite care for yourself and David so that Social Services and nurse can decide the best way forward now You need assistance as you will become ill and will not function efficiently on your own now and you need help. We all need to know when to back off under these circumstances.
David has been on pain medications now for quite a time, so I suppose His body is not getting relief from the medications He is taking, so now you need to stand back and allow your GP to arrange that assistance that you have fought for in the past
Remember it is not a failure to ask for help, it is from a position of strength when we understand we need assistance
BOB xxx
Hi pat
I am so sorry for what u are going though and their is me going on about my problems I'm sorry u had to listen to me going on, and I want to thank u from the bottom of my heart if it was not for u I would not be still here so if there any thing I can help with I will try and help
Respite is what you need, either they go to a health centre and be cared for a weekend. So you can re charge your own batteries. If things get too much which it seems your there now, then call an ambulance and when he gets into hospital explain what's happening behind closed doors. You will get help, you start doing the shouting to get help. Praying for you x
Dear Pat,it's wendy here,I've read allot of your posts,so feel as if I know you a little bit,I can really truly understand what you are are both going through,as others have written, I'm the one with chronic pain and husband trying to help.Could you ask your hubby,is it David? If having time away from you or time away from the house would help him,is he living in a lot of guilt? Which I can imagine both of you are,I live almost every waking moment with guilt of being in such an unseen killer of chronic pain,it's even harder when you are in a long term relationship,both retired,both with each other a lot of the time.I find that when I do get out of the house on my mobility scooter,I can thankfully walk a little bit but very painful,but being away from a person who is a loved one can make pain levels drop,well it does for me,as I then can deal with the guilt.My husband is extremely active which also has its issues,I know you are partially sighted as well pat,I think you are amazing,but is it possible for David to go to day centre,I know he'll be in pain,but being with others for a brief time may change things.It does make you very angry when in so much pain and no amount of morphine will take it away,jon and I aren't good at anger,too polite with each other,which isn't easy,as I'd love to shout my head off,but can't.Also can David write a post,or read how others with chronic pain find their lives living with chronic pain.As you know there isn't an easy answer,my pain specialist says I need to work on befriending the pain,aaaarrrh! again so bloody hard when in such suffering.For me I am looking for a room to rent locally to my house,so I can retreat to it on my scooter for a few days,be on my own.haven't found one yet and bit expensive long term,but for a short term thing,not sure if David can do this on his own,but it may be a way of him getting a bit of independence and emotional space for both of you.
i love your name - you just have to have bendy in front of wendy.
you are definitely someone after my own heart.
space. time apart. on your own. all these are so very important when you are together 24/7. i have my snug - room of the kitchen and near the teapot while david is usually in the room in his rise/recliner. fidling on his laptop, watching telly or asleep. the problem he has had for almost 2 years has been hum slipping further and further into depression. total lack of any motivation and really cant b hothered.
he has a beautiful railway layout which has been in his life in various formats for over 40 years. reincarnated each time we moved. when at sea he could make models as they took up little space. now it sits gathering dust and he has no interest. that does upset him.
i have just been throught to ask him your question. how does he cope with pain. he answered - badly. besides his broken back, he has degeneraion of both upper and lower spine. ibs. imsides all twisted. cpod, diabetes and something else. he is and probably always ill be angry with the way the royal navu kicked him out with a medical pension.
all our day centres around here, sucj as they were, have been closed. not sure he would have gone anyway. he used to belong to a couple of moel railway clubs but foun that too painful. but he des do the shopping for us. i am no good in a shop - registered blind - and wander around trying to look usefil. he also walks the collies most days which he calls his therapy. that is as painful as doing nothing he says.
i do get away. spend a bit of time t both scotland and westminster government. usually only a day trip but a friend in the village helps ut.
if you and john cn get a little respite even an hour or so it is great value and helps recharge that ailing battery. i dont know how dependent on him you are bit certainly with david he cant cook or do any little chores around.
i sometimes think a book on life as a carer might be an insite.
Pat, I had no idea how it was for you and I am deeply saddened. I am also very sad for David, your angry, frustrated, pain filled husband. But Pat, David mustn't speak to you like that. Although you must give every ounce of your patience and love, it is wrong to accept personal abuse. The account you gave sounded like an assault and it is wrong. I agree that your GP must find some help for you both and you must step back and let David be persuaded to accept it. If you don't look after yourself now, you might both go under. Xxx
please dont be sad. that was never my intention. i was judt trying to show what it is like the other end of chronic pain - the carer. no i agree - verbal abuse is totally unacceptable but that is whe i switch of usually and go into auto pilot. it has been like this for many many years so guess i am used to it. i have spoken at lenhgth to our wonderful pain team and whost they agree it is awful they are not shocked or surprised. it is more common that people realise. the unvelievable pain takes ove and no amount of persauding, reasdoning, bullying or cajoling will shift that person. it engylfs their whole being.
thy work closely with our gp.
unfortuantely care and support from social works is non existant nowadays. yes leaflets on how to care. group meetings if you can get to them but respite is a thing dreams are made of. it has never hapened and certainly wont happen now. believe me i have spent over 20 years battling both here and in england.
there is a charity called combat stress which takes ex servicemen with mh problems - gets them yo a level they can manage and sends them home. david spent 3 weeks there over 2 years but because he has chrinic pain and will never get better they wont take him any more. he loved going there. afraid that is the way ik is gone. plenty of talk but no monet so no action.
but i am a leo and a fighter. i love life and all its foibles. when lofe throws crap at you - meet i head on.
thank you for your kind words. means a lot and makes me go [ink
If you say so lass! By the way, what about SSAFA or British Legion? A very wealthy organisation and I mean wealthy! They still have convalescent or respite opportunities, as indeed they should!
oh ssafa - tweed knicjers and sensible brogues. we give them a wide berth in this house.
how do you know about them
rbl yes although it is poppy scotland up here. there are also blesma homes and several others. worth thinking about.
been having a poke around at holidays for us both. bit of warm sunshine. some good bargains to from thomas cook. means i can go even though will still have to look afte him - someone else will feed me and that my friend is a big plus in my book.
I have only just seen your post and I am in tears after reading it. I cannot contemplate what you are going through and I feel humbled that you have given me advice in the past yet you are going through so much yourself. I truly hope that you find a way to get some relief for David and at the same time some time and rest for yourself. If I can ever help or you just need to chat you know where to find me
please dont cry. i was trying to show the other side of chronic pain - from the carers. i cant in=magine what any of you go through - hour after hour day after day relentlessly. i am not saying verbal abuse is acceptable - it isnt but for many of us it is normal. i have spoeken at length to our wonderful chronic pain team and they were not the least shocked or surprised.
ypu kee[ sharing your hurt with us on here and like everyone i will answer as i can.
hugs
pat x
Hi pat,don't worry about replying to me if you are exhausted,I can't do too much on the computer as pain when sitting gets too much,as David says even when walking your dogs pain is still there,you have both been on my mind so much today,jon and I have been together 26 years now,he's mid 64,me 51,he's out playing tennis at the mo,told me not to overdo it,well I have,I wander around this large house in London,trying to escape pain,but of course it follows.My Dad was in the army,now late 70's,he has his train set too in their dinning room,guess what David,his is gathering dust too,hope this makes you feel more normal.My Dad is carer for my mum who has M.S,we have auto immune disorders and connective tissue probs,hence bendy wendy,my skin,ligaments,tendons are all too stretchy so joints disc locate,hence chronic pain for me,but not everyone does,have you seen chinese contortionists,wonder if they hurt when get older.One thing I wanted to mention was supplement called DHEA,it's from wild yams,my pain specialist said to try it,you have to get over Internet,Amazon have it,not expensive,I got 25mg tablets,it increases testosterone which in some people helps reduce physical pain,well sadly it hasn't helped me but my mum also having pain with her m.s started it two years ago,taking 25mg a day,and it's worked amazingly with her pain and energy,Mum can only shuffle along now,but pain levels manageable.So don't know if you could ask your pain specialist,don't need prescription,just maybe check David with your other health issues.My Dad tried it for a bit to see if it would help weightloss,Mum was thankful he came off it as his libido came back!! mum said that would give you nightmares,so watch out Pat.Another remediy I use are nettle stings,works similar to tens,roman gladiators used them to increase circulation and pain relief,I have them in pots outside kitchen,for a quick sting to divert pain when legs are screaming at me.Enjoy your dogs,we had st Bernard's,then basset hounds as family pets,now a big fat tabby cat.
Depression and chronic pain is like chicken and egg thing,which came first with me,but both make the situation worse don't they.Must stop op and move body as pain going up.Take good care,wendy xx
I really do share your pain, how awful it must be to hear those words coming from a loved one. When pain hits its surprising how quickly anger can surface. You both need support, you're doing all you can to help him but you're only human and you need rest, a break anything to step away from that a little while. He may not be aware of his harsh words but if he is that is crossing the line. You are strong, you are so very caring and do everything you can to help ease his pain. Those time slots between the medication is there for a reason. If they're not working and you're worried he'll take it to the extreme and accidentally over dose, I'd seek more help and more support. I know how crap the NHS can be but this experience is very traumatic for you both. You're tired because he's tired, and he's tired because the pain won't stop that reinforces the anger and he then directs that anger at you. Which is not right, he may not mean to but you need some support. I was close to tears hearing about what has happened, you're not alone.
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