Hi Jacci,

I'm so sorry that your Mum's prognosis was not good; it does sound like the doctor is compassionate though which may be of sime comfort. If you are anything like I was you will be rushing around on auto-pilot: try and get support from whoever and wherever you can. Am wishing you strength at this difficult time and we are all here for you. Hope x

Hello everyone, I actually feel like my brain and emotions have been put through a washing machine today.

I could not be a Dr you know, how they do the bad news thing I dont know. He was nice though, he made sure that I knew why I was there and forewarned me it wasnt good news before we went in to see Mum, obviously I knew but that was lovely of him.

I would really like to dig myself a hole somewhere and just stay in it tbh but I know that I cant do that, Im so tired, sad, worried and I feel guilty (I will explain that in a mo) this morning it all feels too much but once Im up and about those feelings will just have to be put away as they wont do Mum any good at all.

I saw the Macmillan nurse yesterday, she  was with us when Dr told Mum her results.She was a very caring lady, she kept asking me how I was I said I was ok and just wanted to look after Ma as that is all I can do for her now.Ma is desparate to come home and that is what they are going to arrange, she is still very disorientated but much less confused than she was...now this is where the guilt comes in, my heart feels that if Mum goes home I should move in with her, they are going to arrange carers 4 times a day so I could travel to work and back so Im with her overnight,Both the Macmillan nurse and hubby have said that as I would have to travel 2 hrs each way and work during the day it is a very bad idea....the nurse says I must look after myself as things will only get worse and I will  need to be well....I have backed down and said I will stay over a couple of times a week but I was brought up a Catholic, not that I am now. and Catholic guilt is extreme! Therefore in my mind Im letting her down, I know in my mind its not rational but there you go.

Mum thinks she will go home, get herself back to normal and that life will be the same for her, obviously thats not the case.My normal Ma would hate having carers and would hate all the devices they are going to put into her home and would hate me for letting them do this.They have said that when the time comes they will arrange a nursing home or hospice nearer to where we live. Also, bless her she has now got a chesty cough, this is a new symptom.

Well that is all my moaning done for now, thank you all so much for understanding.

Take care,

jacci xx

Hi Jacci

Please do not feel you are moaning.  This is such a raw emotional time for you and whilst Iknow exactly what you mean about wanting to be there for your Mum, you will  need lots of stamina just to cope day to day with your own feelings.  In no way are you letting your Mum down by letting the professionals give her the full care she deserves and that they are trained to do.  I can understand the 'guilt')though my Dad kept telling me this was wasted energy bless him) feeling as my Dad had to have carers even though my Mum was still with him then(she was in her eighties).Physically and mentally she was unable to cope with the care level that was necessary and actually though myDad was notkeen on having 'stranger's in the home (nor my Mum for that matter) he did realise that the carers had exactly the right amount of emotion/caring to take control and the family was always on the end of the phone if required. He spent the last 10 days of his life in a hospice close to my their home and it was a wonderful support for all of us.  This is not an easy decision/journey to take but you need to be as well as can be to help you to cope.  Your forum friends are here when you need to chat and we all need to do that from time to time - its all part of the 'coping'mechanism I have come to rely on to get me through the days. My thoughts are with you.  Jules xxx

Thanks for that Jules, I do know you are right really if I was talking to any of my friends I would say he same thing to them. Its just the heart versus the head thing isnt it. They asked me about the CPR issue yesterday as well, I said not to resuscitate.....I know that was the right choice but again its the heart versus the head thing.

You take care Jules,

Jacci xx

Hi Jacci

Heart ruling our head is human nature and none of these decision are ever ones we want to have to make.  My Mum lives in a  residential care home and she herself chose the not to resuscitate clause when she discussed her care plan.  I found out later when she gave me permission to be 'in the know'. Of course that saved me a difficult decision myself and with her previous mental health issues was not a surprise but still hard seeing it in black and white.  Look after yourself  Jules x 

Hi Jacci,

I cried when I read your post, what you are going through and the guilt you are feeling is like de ja vue to me so I really want to offer you some reassurance and hope that my experiences can in some way help you.

Just like your Mum mine was desperate to get home, she didn't know her full diagnosis (never wanted to) and like your Mum had unrealistic expectations of what would happen once home.  I was so worried and didn't think it would work, however I had brilliant carers and Mum managed at home for 7 weeks before going into the hospice the day she died.  Although it was hard and although I too have guilty feelings, I am grateful that we managed for that long. I went round several times every day and phoned her constantly (while she was able to use the phone).  Although I was there a lot I didn't move in; when Mum was stable the carers put her to bed early, I would pop in later and she'd sleep around until the morning when the carers returned. In a way I do feel guilty that I didn't move in but I was trying to stay well myself (mentally and physically) so that I could do my best and I knew I couldn't cope if I was there 24/7.  Nobody can be a 24/7 carer and I was terrified knowing what to expect having just been through it with my Dad.  Spending some time at my own home with my own family was vitally important to me keeping my sanity and somehow muddling through my part-time job also helped (although I did have time off).

Things deteroirated quickly at the end so Marie Curie came in during the night (they only offer 3 nights a week).  We knew it would be impossible to cope much longer so Mum went to the hospice.  It was the hardest decision I've ever had to make and one which I still question myself about mostly because nobody expected her to die the same day she went there.  However I know deep down that it was the right decision, the hospice was an amazing place and sometimes we have to realise we can only do our best and let the professionals take over.

You must do whatever you feel is right for you and your Mum, and I can tell you that you will always have feelings of guilt whatever your choices.  But try not to be too hard on yourself, your Mum will be wanting you to look after yourself too you know.  Try and get as much support as you can, do whatever you need to keep yourself sane so that you can be there as a daughter for your Mum.  It is hard looking after somebody at home and sometimes the practical side of caring doesn't allow a lot of time for being a daughter.

It sounds like your medical team are good which is wonderful.  I had a lovely MacMillan nurse who was so kind to Mum and also so kind and worried about me.  It is good that your doctors are compassionate, I had a mixed experience of some good and some not so good.  My eldest son is training to be a doctor and I'm sure the experiences he has been through enable him to have much empathy when it comes to him being the deliverer of bad news.

I hope I haven't rambled too much and I hope that you can find some help from all your virtual friends on here.  Thinking of you.  Hope x

Thank you all again for your support,it really helps to talk to people who really know what  you are going through but very very sad that we have to find ourselves on here in the first place. I really dont know what to do about Mum. She is much more lucid now, most of the time, although she thought she was in Ireland today and told me the Drs need to inject some dye into her eyes to treat her. The rest of the time she knows whats going on and is so so depressed..she said she wishes she had never been born...very sad.

My main concern now is she is so weak, she is even saying how weak she is...I dont know if she really should be going home at all, Hubby came in to see her today and he said she shouldnt be and that in no way could she take care of herself even with carers coming in.The problem is she desperately wants to go home and get herself back to normal but I dont think she will be back to how she was before,well obviously I know she wont. I have got to call the occupational therapist on Monday, do I voice my doubts or do I hope that they know their job and wont send her home if she isnt ready?

I hate this all so much, not only is this disease going to rob me of my Mum,its in danger of making her last few weeks/months a misery...she has always said she wouldnt go into a nursing home because they can do what they like to you in there. Thats one of the reasons Im worried about saying anything as I dont want it to be my say so that takes away her independance....this whole thing just gets worse and worse.

ThenI think (Catholic gullt again). should I just give up work and move in with her and look after her till she has to be taken care of somewhere else? I know I wouldnt want my children doing that for me but maybe Mum would...I dont know what to do for the best for everyone...right rambling again so I will go but thank you all again and Im truly sorry we have to be here.

Take care,

Jacci xx

Hi Jacci,

I really hope the professional team can help you decide the best way forward for your Mum.  It is so difficult making decsions about care; probably helps somewhat if our loved one is able to understand the full picture and has realistic expectations, but if not the decisions fall upon us.  Ultimately we all want the best care for our loved ones but sometimes making the best choice is also heartbreaking.  Whatever decisions you choose you have to tell yourself that you are acting in your Mum's best interests, that is very difficult and to this day I still go over decisions I made in my mind even though I know I did everything I could.  I doubt your Mum would really want you to give up work, as Mother's ourselves we know that our ultimate goal is the happiness and well being of our children.  I'm so sorry you find yourself in this position, there is no easy way just one day at a time.  Wishing you strength in the coming weeks.  Hope x

Well Mum seemed a tad brighter last night, if she can keep like this I can see her going home. I explained to her that people would be coming in to help her once she is home and apologised for the fact that I cant. I basically said I wasnt allowed to as I havent got the training....as I thought Ma wasnt too happy with that she couldnt understand what sort of training I would need to look after her . I then said obviously with work and everything the Macmillan nurse advised me not to as well as I need to keep my own strength up..well bless her Ma wasnt impressed with that either!

I managed to sort of pacify her by saying that if the carers etc feel she is doing ok on her own they wont come round so often. That seemed to do the trick.

Bless her she said she reckons she can beat this for another couple of years...wouldnt that be nice......Good to see her a lot more positive though...

Take care all,

Jacci xxx