Hi,

It really is not all that easy when our elderly loved ones become ill.  It sounds like you Mum really does not want any intervention other than the palliative care she is already receiving and she is doing so well in coping on one care visit a day. I can imagine you are feeling concerned and frustrated being so far away but you really are doing all that you can for her in the circumstances and I am sure social services will move up the care if you feel it would be an advantage as I know they prefer to keep people in their own homes(where they are usually happier).

My mother does not have cancer but at the age of 85 suffered a fall and lost all confidence in looking after herself (much different scenario to your plucky mum) and even after nearly nine months in a rehabilitation hospital ward, she categorically refused to return home.  Sadly eventually social services had no option but to place her into a home and luckily for me they moved her to within a couple of miles of where I live.  I am her next of kin but due to my husband's incurable cancer they felt it better for me to have her close at hand for visiting.

I am sorry to read that the past few weeks have seen such deterioration in your Mum's condition and hope that between the consultant/GP and social welfare she can be kept comfortable and painfree for as long as is possible.  Do come and chat whenever you need that little extra bit of support that this forum is so good at.

Hope you are keeping well yourself. Regards Jules

Hi Jules,

Many thanks for your kind words. My worries and concerns about my mum are pretty small compared to what others on here are going through; either themselves, or with loved ones. And I do appreciate the time people like yourselves spend on here, reasuring those, like me, with our troubles.

I think the biggest issue I have is the combination of the cancer growth AND her dementia. Although she still copes with the overall day to day activities, (cooking/ cleaning etc) anything out of the ordinary; like visits to hospital / GP cause her such stress that she simple forgets it ever happened. The last visit to the cancer consultant, when her wound bleed badly, was so traumatic. She sobbed whilst being examined, as she thought she would have to stay in hospital. A couple of hours after we got back, whilst sitting having a cup of tea, I then had a conversation that really hit home to me the level of her dementia. It went something like this :

'What day is it?' Said Mum. 'Wednesday' I said. 'But it can't be, because it says in here, (looking at her diary) that I have a hospital appointment at 3pm'. - She had completely blanked out the hospital visit from just a few hours before. She also has absolutely no recollection of having breast cancer 13 years ago, or getting treatment at that time.

When she asks why everyone is making such a fuss over the growth, or asks what it is thats caused it, I have stopped saying its the cancer come back, as she gets so upset and traumatised by it. Its like being told for the first time you have cancer, only over and over again.

Still, she is struggling on, so we will just have to see what the future holds, and I'll have to play it by ear as things develope.

Thanks again. Liz.

Hi Liz

Things are never 'small' when they affect the ones we love especially when we have no real control over things.  It is heartbreaking that your poor Mum is going through so much anguish (for you and for her) and amazingly with dementia the long term memory usually remains whereas the short term memory is non-existent.  So hard when you have to keep trying to explain things that are happening in the here and now and probably 15 mins later you have the same conversation.My Mum has bi polar disorder and sometimes dealing with the mental side of things can be harder than the physical so I really empathise with you at present.  All I can say is that  you are doing your best and she is very lucky to have a caring daughter who can at least make sure that the care she is getting at home can move along with her needs - long distance caring is an absolute nightmare as I dont think you ever really switch off.  Hope you are taking care of yourself too.Jules 

Hi

I know this post was years ago, but I wanted to reply to say I’m currently in the same position.

I live miles away from my mother, who has breast cancer, and the cancer has also broken through the skin. She’s had a few bleeds every week in the night, but she struggles to stop the bleeding and sometimes district nurse comes out in the night to apply treatment to stop the bleed. They can not operate as she has ill health. It’s horrible to see someone you love go through this and live so far away. I have a child, job and mortgage, but I travel as often as I can to see her but it’s not enough. 

I wondered how your story may be going? 

Hi Kayz00.

Sorry to hear what you are going through. Things moved on an awful lot since my original post. Mum actually managed pretty well for the next 3 years or so. The cancer that had broken through her skin on her chest did not grow, and although she had issues with it sometimes bleeding, she was doing ok, with the DN coming out every couple of days to change her dressing. And her dementia seemed pretty stable as long as she had no doc/hospital appointments etc. Then in the summer of 2016 her lovely Age UK carer mentioned to me a very small lump she had on the side of her neck. Short story was that amazingly she agreed to go to hospital to have it checked over, and the results were that it was a secondary cancer. I agreed with her Doc/consultant that there was no point putting her through the trauma of treatment, and so Social Services upped her care visits to 3 a day. I was told that chances were it would be slow growing, like the return of her brast cancer.  - Except it became obvious pretty quickly that it was agressive and fast growing, as within weeks it became the size of an apple. Oct to Dec 16 was a very bad time. As she was not self funding, we had to keep having Social Service reviews on her wellbeing. The local Hospice got involved. The DN started visiting every day to dress both her chest wound and her neck. Her dementia went up a gear with all the comings and goings - so she was forgetting why she had a bandage on her chest and removing it - meaning the carers were coming in in the morning and her bedsheets would be soaked in blood. I was doing the 240mile round trip as much as I could, with a daughter studying for her GSCEs at home and a hubby who had just lost his job. I was getting calls almost daily from the Care Manager, who was concerned for her wellbeing. I felt totally helpless. Not sure really how I held it together!! I knew that things needed to come to a head. And that happened 3 days before Xmas 2016, when I got a call from mums neighbour to say they had found her standing in her garden at 8.30am in her nightie, confused, cold and covered in blood from her breast wound. She was taken to A&E and we dropped everything to get to Kent ASAP. I have nothing but praise for the NHS with how the next 24 hours went. I was told that they would request a fast track admission to a nursing home as it was obvious she needed 24 hour care. Everything swung into gear, and liaising with the A&E Consultant at the hospital, the local hospice, social services and the NHS Fast Track Service, by 2pm the following day (the last working day before Xmas!!) I was taking her to a nearby home that specialised in cancer and dementia care. When we finally got back to Wiltshire late that evening, I counted the number of calls I'd received/made on my mobile since that 8.30am call from mums neighbour the day before - it was 42 !! That night I actually slept better that I had for the last 3 month, knowing that she was safe and being cared for. 

The move to the home was traumatic for my mum, but after a week or two she came round to understanding that she needed people to care for her 24/7, and could not move back home. The neck growth was very bad, and she deteriorated quickly from the end of Jan17, passing away peacefully in the nursing home on 17 Feb 17. She was 92 by then.

Friends and family tell me that they were actually more worried about me, and how I was coping in the lead up to that Xmas than how my mum was. It was a very difficult and stressfull time, but you just do the best you can. I look back at it all now, and feel that in the end, it all worked out ok. She was realtively happy in the nursing home. It was a lovely place, and they took good care of her. They agreed from early Jan that there would be no admission to hospital, so her passing in her own little room, in peaceful surroundings was the best I would have hoped for.

My thoughts are with youKayz00, and for anyone going through this kind of thing with their family. Please message me anytime to talk through what you are going through if you want. Sometimes just writing it all down helps......xxx