GP is ringing her tomorrow morning....letter just says he needs to discuss some test results with her. Bless her she says she is starting to get breathless again, I hope it isnt the fluid building up again. Mind you chances are it is I suppose.

Jacci

Hi

Have just caught up with your thread (internet access has been up and down).  Wish you and your Mum all the very best for her next appointment/discussion with the doc. and hope she can have a peaceful Christmas and be kept pain free.  (My hubby has cancer of the lung membranes  and I am aware of the breathlessness /pain problems that your Mum will be experiencing).  Do hope she can give her doc permission to discuss things with you which may make it easier for you to help her through any discussions that take place.  I usually go with my hubby for his hospital appointments (he knows only too well what is going on as he wanted to know right from the beginning(but does not find it easy to talk about from a very emotional point of view - diagnosis was nearly two years ago now and he has palliative care involving pain relief/regularly check ups)  as he prefers not to discuss things more than is necessary.  The only thing I would say is to take a notepad/pen both with the questions you/your Mum may have and also to jot down anything the doc may say so that you can refer to it afterwards (I find it helpful as very often its hard to take it all in at the time).  The forum is a very supportive place and its a good place to offload anytime you need to share your thoughts/emotions.

Take care.  Jules54

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 can only imagine the emotional turmoil going on in your head at present.  Sadly I do not think there are any right or wrong decisions here.  Its as Hope says you have to be guided by so many feelings, your own, your Mum's and those of the professionals who are able to see it without the 'emotional link' because that is how they do their job.  As far as the Occupational therapists are concerned my insight into this was when my Mum suffered a fall and was hospitalised nearly two years ago now.  She was very weak mobility wise and they would not allow her home unless she passed their tests which included walking unaided with a frame and the ability to make a cup of tea.  This never happened and as I could not have her with me (sadly it just would not work as we have never been close and it coincided with the terminal diagnosis for my husband) they moved her to a a rehabilitation wing of her local hospital to see if they could improve her situation.  At this point she decided she did not want to go home, did not want to live  and from there on in has never attempted to help herself, which is why the council arranged(after nearly 7mths trying the rehab) for her move to residential care which she pays for at present as the council wanted her to go into a 'care at home' plan and she refused this option (a worry for all of us as her savings will not last very long but thats another story!!)

I wish I could help you with your questions but, if it was me, I would certainly talk through all your fears when you speak with Mum's occupational therapist but generally if they consider your Mum able to make her own decisions the final say so would come from your Mum if the O.T. feel she could manage with carers.  The O.T. team who assessed myMum did listen to what I had to say and took my personal situation into account at the time but this was mainly when we got to the end of the time in rehab and they moved her to a care home nearer me so I would be able to visit more often.

Personal circumstances/support  differ from family to family and even council to council but I am sure when the time comes you will find what is right for you, your family and your Mum. Do stay in touch and draw what support you can from the forum at this difficult time.  hugs  Jules 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

Hi Jacci,

So pleased to hear your mother was a little better last night. I know all too well how hard it is for us but it is also hard for them regarding their loss of independence. My mother was a lady who like most mothers had always been fit and active so when over a period of time she had to give her gardening which she loved so much, and then as the cancer progressed she wasn't able to walk so had to rely on others to help her dress etc, it became so hard for her. She accepted it but I know she hated it. Your mother shows a great fighting spirit by saying she can beat this cancer for another couple of years. It make one wonder where they find the reserve of energy at times.

Take care Jacci, sending you and your mother best wishes, Brian

Well I have booked 3 days off work as Im so tired I just need a few days to recharge, will obviously still be visiting Ma and helping get things sorted for her coming home but with not working that will be one less thing to think about.

Take care all,

Jacci xx

Hi Jacci

Just so pleased  you were able in one way or the other to pacify Mum about the whys and wherefors of care at home by those who are specially trained for it.  The plus side to this too will be that when you are able to visit you will not be too tired and she will enjoy your special times together.  Enjoy your few days off to recuperate (perhaps give yourself a little treat too as you really do deserve some TLC for all you are going through).  Hope your Mum's spirit carries you both through the coming weeks.  Take care  Jules xx

Hi Jacci,

Sounds like  you are doing really well in the way you have explained things to your Mum, it is also good that she remains positive as I'm sure that helps.  It must be so difficult accepting that you need care with everything, but little by little I know your Mum will accept the care she needs from the carers.  I really hope social services provide you with good care and I hope your few days offer will give you time to recharge your batteries.  Take care.  Hope x

I know what you feel my brother was aso suffering from Lung Cancer and it makes me weak to see him sufferring fro series of chemotherapy. He is now admitted at Basavatarakam Indo American Cancer Hospital & Research Institute in India. I don't know what happen to him he is not even smoking but he acquire Lung Cancer. I am really hoping for his fast recovery. Really Cancer is a Traitor illness!

I know what you feel my brother was aso suffering from Lung Cancer and it makes me weak to see him sufferring fro series of chemotherapy. He is now admitted at Basavatarakam Indo American Cancer Hospital & Research Institute in India. I don't know what happen to him he is not even smoking but he acquire Lung Cancer. I am really hoping for his fast recovery. Really Cancer is a Traitor illness!

Hello Monica, yes cancer is evil and random, it just seems to strike wherever it wants. Im so sorry to hear about your brother, please come and have a chat on here as I have found it really helps.this situation we are in is far from easy.

Well Mum is so so much better! She looks normal, is acting normal, the chesty cough has gone and she cannot wait to come home! Honestly to look at her now you wouldnt know she was ill!! The meds obviously affected her big time. I just hope that she can stay at this stage for some time, she is so positive now as well, bless her she is a very strong woman which is why when she was so weak last week it was such a worry..I think she will be home tomorrow or Thursday and I have decided after a chat with hubby I will stay one night in the week and one night at the weekend and obviously play it by ear.

I am still in my bed.....Booking these few days off was one of my better ideas!!

Well take care everyone and thanks again so much for your support.

Jacci xxx

Hi  Jacci

Glad you are able to manage that much needed lie-in/rest.  It must help enormously to have seen your Mum in better spirits and do hope she can maintain this and get home this week.  If nothing else she will probably be far happier in her own bed.  Also sounds like you have a good plan for your visiting time and am sure she will really appreciate it.  Its all a case of taking things as they come and coping the best we can given the circumstances and the forum helps us all along the road we are travelling.  Sending kind thoughts and hugs for a peaceful week.  Jules xx

Well Mum is hopefully going home on Thursday, I really hope so. She had a bit of pain yesterday, they gave her a small dose of oxynorm and it did work, hopefully the small dose wont give her the awful side effects.She is now her normal self mentally and is talking very matter of fact about the cancer, she had a couple of friends in yesterday and they asked her how she was and she just said I had fluid on my lung, then it collapsed and Drs say I have cancer.

She is hoping for a miracle  which is fine as it keeps her going, she is a very strong individual and wont give up without a fight bless her.

I have a very dear old friend coming round today for lunch which will be fab and then off to Mum tonight. It is much easier dealing with this when I dont have to go to work I must admit, this break has done me the world of good.

Well take care all,

Jacci xx

Hi Jacci

Good to read your update and to hear that your Mum may soon be home.  She sounds as though she is regaining her strength (mentally and physically) and hopefully her medications can keep her comfortable as this makes life a little easier to deal with.

Hope you have a lovely lunch with your friend and the break definitely helps regain your own cope-ability (think I made up this word).  Wishing you and the family all the best both now and for when  Mum returns home.  Virtual hugs and peaceful thoughts sent your way.  Jules xx

Hi jacci

I'm sorry I've not kept up with whats been going on

With you and your mum.

It's really good news that's she might be home Thursday

I will have my fingers and toes crossed all goes well

And the medication she is on now keeps your mum

Comfortable as possible, much love to you, your mum,

And family xxxx

Hi jacci

Was thinking about you, and thought I'd check

To see how things are . How is your mum doing?

How are you coping jacci? I hoe your mum made

It home yesterday and everything is in place for

Carers to come in xx takecare Hun

Hello Jacci, have been thinking of you and wondering how you and your Mum are doing?  Hope x

Hi all, I havent been on here for a while as Mum came out Friday 24th Jan and I have been staying with her.

She has dramatically gone downhill since she has come home...very breathless and in a lot of pain in her upper back. She is supposed to be having carers coming out 3 times a day and they are coming once, I must have rung 20 different depts of this , that and the other and they all tell me to call another dept to sort it out so I have left a letter for the district nurses asking them to either sort it or contact the correct dept to sort it.Im wondering if the fact that I have now come home will speed things up.  Hospice nurse came around, she was lovely but we had to talk about things like putting Mums affairs in order so it was a very emotional visit.

Mum now seems to be getting confused again I have been going through her pain killing medication with her ever since she came home and she just cant do it now, she has just rung me asking how to use her home phone which was the phone she used to call me...I feel like the lowest of the low having left her.I can only hope and pray that when the district nurses come round tomorrow morning they notice the deterioration since Friday and do something.I have written her out a note with  timings and doses on for the painkiller but I dont know how she will get on, I was going  to go back Weds to stay the night and do shopping and that sort of thing but may well go back tomorrow if she cant cope.Its very unfortunate but my work have not been at all helpful, I asked for a week off compassionate leave, as that is what mac nurse and gp told me to do, which is for death or serious illness of a close relative...guess what Mum doesnt qualify for serious illness would you believe, I must admit I got so so cross but my gp told me to self certify for a week...I have worked for my company for 10 years and have one of the lowest sickness records in my 100 strong dept!I have not felt stress like this since my brother died suddenly 9 years ago but am back to work Tuesday although how I will manage I really dont know.

I feel I am at the end of my tether now but hopefully will have a good sleep..at Mums I have been sleeping on an inch thick mattress on the floor! Mum doesnt know the timescale...on notes hospital has said weeks/shortmonths...does anyone know what short months could mean?

I cannot believe the difference a few days has made in Ma.....I hate this all so much but then I know we all do dont we.

Take care all.

Jacci xxx

Hi Jacci

Have been off forum myself for a few days.Am sure you are emotionally and physically spent at present.  Its very hard trying to cope with day to day life and it sounds as though because you have been available for your Mum the local services have been a bit slow to respond.  Have you spoken directly with your Mum'sGP as they should be able to home visit as a matter of ugency and they will put district/community nurse in place. My hubby's consultant did all this on our behalf so we feel very lucky as it helps relieve the pressure a little.  Sadly in some areas it seems its only constant calling that can make things happen and I do hope you can manage to have something in place soon as your Mum sounds like she needs more help now that she has become weaker and thus more confused.  As to your query about timings have not had to face this yet with hubby but six years ago when Dad was ill with cancer they first gave a timescale of 3 months (he was in hospital at this point), when it got to shortmonths they explained nothing was exact as people shut down when 'the time comes'. Dad told us he would make it more than they said as he wished to have his birthday at home plus his wedding anniversary.  In fact in celebrated both those in his own home, returned to the hospice 2 days after his birthday and told us he would be happy to go anytime.  His pain was controlled and the last time I saw him we were still able to laugh at his cheeky way with the staff. He died 10 days after his 85th birthday holding the hand of his 'special nurse' (his choices had been made and adhered to at the end).  Its one of those things that I am not sure any of us can know for sure the if's and whens are one of the most difficult to handle and even the experts can get it wrong.

Sending you virtual hugs and really hope you can get her 'carer's routine set up to work correctly which will in turn help your coping mechanism a little.  Takecare.Jules xx

Hi Jules, I hope you had a lovely break.

Im sitting in bed still just crying..will call Ma about 12 as carer and district nurse should have been by then. If Im this emotional I have probably done the right thing coming home maybe to let it all out today so Im strong for Ma when I go back..how I will work tomorrow I dont know but I will take that as it comes. Im very disappointed in my work so to be honest Im not too bothered about them, they can just get on with it...I have more urgent things to be thinking about. Im waiting for the district nurses to call me and will see what happens there.

Ma said to me a few days ago that everyone dies and she is no one special but as I said to her then she is special to me (even though we have had a wierd relationship prior to this. she never wanted to see me!!) she is my Ma and its all just too too horrid.

I need to sort out my own cancer check up today as Im late doing that with all that is going on so I know coming home was the right thing to do as I need to make sure Im still in remission and she hasnt called me yet this morning so maybe she is a bit less confused than she was last night, I really hope so.

Rambling again so will go now..again the support on here is wonderful, I dont think Id be coping if it wasnt for releasing stress on here...I really missed not having internet access at Mums!

Take care,

Jacci xx