This topic contains 56 replies, has 14 voices, and was last updated by 
DaiCro 11 years, 9 months ago.
Oh Sue,
I can only describe this period you are going through as the very worst feeling in the world, I so want to give you a big hug and make it all go away.
At the very least Michael's pain is controlled a little better now, I hope he is not too distressed and you are able to talk to him about your fears as well as he is about his own, this isn't selfish on your part but purely natural. Somehow doing this made Patrick's last few week's a little more bearable. I am sure you are there at every turn to comfort him in any way you can and really that is the most you can do.
I am thinking of you both
Love Tina XX
Hi Tina I dont know what I would do without this site you are the only people who understand what im going through. There are so many questions I want to ask but then I think do I want to know the answers. I feel myself start to panick when there is just the two of us especially at night. Who do I ring if anything happens 999, the district nurse, out of hours GP, I keep thinking because Michael is terminal no one wants to know. Did you feel anything like this with Patrick? you dont have to answer Tina it must be hard for you
Thanks for the Hugs
Love
Sue
Sue
You are correct this site is a godsend for us all, Patient and Carer.
The One I would advice anyone to phone would be 999 they would be my first call.
Honest Sue please ask anything you feel you need to know more about I know it wont be easy for you but am sure if you feel its important then it is.
Stay Strong
Love and Hugs Tom xxxx
Dear Sue,
As Tom says you must call 999. I usually called the consultant on the Haem Ward at Stoke Mandeville where Patrick stayed plenty of times and they always told me to bring him in straight away. But the night he developed chest pains, the day before he died, I called 999 They wanted to take him to the local A & E but I was having none of that. I called the consultant at Stoke (this is important) and he spoke to the emergency team who agreed to take him to the Haem ward. Patrick always said he wanted to die at home but as he was in so much pain he agreed to go to the hospital that night not knowing he would never return home. I stayed with him at his bedside for nearly 24 hrs until he slipped into a coma and left me for good.
When the time comes Sue you will be strong. Don't let anyone make you do anything you don't want to you can stay by his side throughout.
If you have anymore questions I will be happy to help at any time.
Love Tina XX
Dear Sue
My heart goes out to you. My love and thoughts and hugs are with you both
Love Jean x
Hi Sue
I would agree with |Tin,I know you feel how an earth are you going to cope,but you will find that inner strength.
I have 2 friends who have both lost there husbands last year,one to Myeloma and one to lung Cancer,both stayed at home and both had different deaths.
Both the wives coped and have no regrets,I wish I could say I was there for them,but Slim was having his SCT and the other one was so quick,its the fear of the unknown that is scaring you.When the time comes,you will step up,but be firm if you want,Michael at home and thats what he wants,push the district nurse.
You are mourning now,so do not be afraid of your feelings,the thing people want is that there partner is in no pain,so be firm. Love Eve
Dear Sue
Has anybody suggested that Michael go in to your local hospice for some respite care? It can be a chance for you to re-charge your batteries and catch up with some much needed sleep, knowing that Michael is being looked after 24/7.
Our local hospice was marvelous. They had Stephen's pain under control straight away and they are very aware of how important that it is for the patient and their loved ones to be able to be with each other and communicate. They had Stephen's medication so spot on that he was able to stay awake concious and talking to me, but in no pain, right up to the end.
For some time Stephen thought he would want to be at home at the end. He changed his mind after a while realising that, for him, it would be not be the best way He thought that his pain may not be dealt with straight away, his dogs would have to be sent away to a dog minder, mind you in the hospice it was nothing to see a dog visiting . All visitors are welcome (Oh boy was that man a softie for his dogs. Loved them a great deal more than me:-) ) Our house is not big but on 2 levels. Where does the hospital bed go? no chance of putting in a hoist so that the bed can be made more comfy. The list can go on but it is a very personal choice that only the people involved can make.
For me the fact that Stephen was in St. Christopher's Hospice was a comfort, knowing that he was getting the best possible care. Some people are in there for weeks. Some go in and out. Stephen died very quickly (it even shocked his medical team. Right up until 4 weeks before he died they were sure he had 2 remaining years)
I have waffled again (as usual ) but the bottom line is I am thinking about you both and hoping that you and Michael get what is best for you.
Much love from Gill xxxx
Dear Sue,
I am so sorry that you and Michael are suffering so much. I am a community staff nurse (district nurse)and I recommend that you ask your GP to make an urgent referral to your local DN to get them round ASAP.
They will assess all your needs and act as liason between you, the GP, Macmillan nurse etc. They will visit as often as you need and will know what other resources are available to you. Here we have the blessing of a charity funded hospice at home team that we can share care with and there is cover 24 hours a day. There is possibly something similar in your area. You need all the support you can get so that you can make the most of your precious time together.
With love
Alison
Dear All Thank you so much for your replys, I would like to wrap you all up and have you posted to my address, sounds silly but would love to meet you all.
have made the decision to ring the Macmillan nurse on Monday. Gill the hospice sounds good. were the same as you we have nowhere to put a hospital bed or a hoist for the shower. At the moment im the one trying to sort out Michaels pain. Im making grafts as to when he has the oromorph then I have to make anappointment to see the GP so he can increase the MST, he doesnt even come out to see him.
Hi Alison when Michael came out of hospital a few weeks ago the DN did contact us she did ask me what we expected of them and I said probably washing etc but she said they did not do that. They do ring to see if Im ok every 2 weeks but as he doesnt need any medical care im not sure what else they could do for us.
Are things different in other parts of the country
Love
suex
Hi Sue
I just cannot believe this is happening to you.i do not think it is different we're every you live.
You should have a package sought end by now it can be different depending on your needs.were is you local surgery,in this get in touch with the district nurse,she should be able to sit down with both of you,and decide what you want.
Hospic,s are very good respite is good,they can offer you so much,they can arrange a team to come in for an hour to give you a break,if its what you want.
The palliative care team,is excellent ,people think its just about dying,it's not they are doctors there that are experts at controlling pain,by contacting them you are not moving on to the next stage you are organising care and pain relief,it is so important the last memories should not be about how much pain or induced sleep your husband was in,go and visit your nearest hospic just pop in or ring them,there is no need to be afraid of the unknown.
Please pick up that phone.Eve
Dear Susannah,
I'm so so sorry you find yourself in this position. The feeling of being alone and not knowing what to do next or for the best is bewildering. Especially when you are undergoing so much stress.
I don't know what to say to help or make you feel better. But please look up The Liverpool care plan.
I believe you and your husband are entitled to be taken into consideration with regards to this plan and perhaps you should invoke or request it or at least talk to a McMillan representative about it.
It is nationwide and has been adopted by all health authorities.
At the very least get a few days respite at a hospice.
Most care homes these days have a hospice type set up within them. You may find that there is one very near to you, much nearer than you imagine. Somewhere you are both familiar with as a care home but unaware that they offer hospice facilities.
A friend and neighbour told me that a care home 5 minutes walk away had been offering this service for some time as the government did not want bed blocked in hospitals by people who deserved more care and dignity than hospitals provide
You may be reluctant to consider a hospice per sae as they are few and far between. But. A few days to re charge your batteries or simply have some one else to listen in the night while you rest can be very beneficial.
Please don't think you need to wait until Monday you need help now, but need to ask for it.
Be brave my dear, and know I am thinking of you.
Love
Min x
Hi Sue
The posts above are correct.
A Hospice is one of the best places to go to have the pain sorted out faster than a GP or Hospital can do it.
I have talked to my young bride Elaine and said that I dont want her to have to care for me 24/7 am not fussed about going into a hospice for her to get a break and for Last stages I dont want to be at home (I dont think ??)
Get some help for you both and grab it with both hands, you are not giving up when a Hospice is used or some one to come and sit with Michael while you get out for an hour or two or just to have a nights sleep.
Am sure if you Email or phone the Nurse on this site she will be able to point you in the right direction.
Love and Hugs
Tom xx
Dear Sue,
yes it's true that district nurses rarely do 'personal care' any more, if necessary you can have carers to help with that (but you may have to pay). If you can speak to the Macmillan nurse on Monday she can advise you on what help and services are available.(If you have to wait for an appointment, get back to your DN and ask her to visit to discuss the questions you have re pain control etc) I agree with Eve's comments about the palliative care team which usually includes a Macmillan nurse and your district nursing team.
The Liverpool Care Pathway (mentioned by Min) is really designed for end of life care in a hospital setting, it allows people to discuss what treatment they do and don't want (and to stop unnecessary proceedures, medications etc).
Don't delay asking for a respite bed in a hospice if that's what you and Michael want as there is often a bit of a wait for a bed.
You need professional support so as Tom said insist on it and grab it with both hands.
Love Alison
Sue,
Mainly because of Patrick's ulcer caused by what turned out to be a terminal bacterial infection District Nurses visited every other day. I will say this reduced the strain and worry I was goibg through – they were just so helpful and understanding. They supplied me up with end of life drugs which were to be used, by them, when Patrick was in need of them as they understood he wanted to stay at home.
I could call them anytime and they did come on unshceduled days if I needed them. Patrick did not want to go into a Hospice and I could not bear to be apart from him for a minute. That was our choice, but I do think a Hospice is a good alternative.
Love Tina XX
Dear Sue
As Ali and Tom have said, get in touch with your Gp and get referred to the nearest hospice, i worked in our local one for a while and a few days of respite was often a godsend to families, especially when pain control was an issue. Even a few days break so you can recharge your batteries could help you both. Sometimes there was a waiting list of several weeks, but generally it was a needs based referral so you need to make your request as soon as possible. It's not always easy to know what help you need when someone just baldly asks the question, especially when you are so traumatised by the sequence of events themselves. I do hope you get the help you need soon. Love Helen
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