My little brother who is 53yrs has been battling bowel cancer for the last 3yrs. He is now end of life care, at home with my 80yr old mum looking after him. He has a hospital bed, nurses going in daily and is bed bound. He is very agitated and says that he just wants to go. I"ve never experienced anything so sad. We are just waiting for Lee to die and i find this very hard to cope
Dear Fiona,
Thank you so much for reaching out and posting on this Community. We are so sorry to hear about your brother Leeās years of living with bowel cancer, and that he is now in terminal care. It sounds like the recent changes, including the change in his health as well as your home environment with the introduction of the hospital bed, are difficult for you, your mum, and Lee. It is natural to find a situation like this difficult to cope with, and I cannot imagine how hard this must be for you both physically and emotionally.
I hope that other members of this forum will feel comfortable sharing their experiences with you, whether they are currently in a similar situation, or whether they have had a loved one in terminal care in the past.
When I found myself preparing for a loved oneās final stages at home, I found it useful to know more about what might happen and how to make them more comfortable, and also how to look after myself. If that is something that you would like to explore, there is much information on the Marie Curie website: End of life information. If you would like talking to someone to receive support and information, the Marie Curie Support Line is open 8am to 6pm Monday to Friday, and 10am to 4pm Saturday to Sunday at 0800 090 2309 (calls are free). There is also an online chat in the bottom right corner of the Marie Curie website during the same hours, if that is easier to access for you - I know from personal experience it can be hard to talk sometimes.
Take care,
Anke
1 Like
Good evening Daffodil,
Thankyou so much for your kind and reassuring words. I am finding it really difficult to cope as iāve never had a family member with cancer. It is really nice to know that there is people like yourself offering help and even taking the time to read my post.
Thankyou so much.
Fiona 
1 Like
Good afternoon Fiona,
Thank you very much for your reply. Caring for someone with cancer is often a challenging experience, and you say that this is the first time that you are having this experience, too. It is understandable that this is difficult for you. You are always welcome to post here.
If you have the time and inclination to read the Marie Curie guide to caring for someone in the terminal phase at home, including information on how to look after yourself during this time, the guide is available here: Caring for someone dying at home. This is a bit more targeted than the link I sent earlier this week, and I found this very useful when my family member entered the final stage of life.
Finally, like you, I also found it comforting to know that Marie Curie is available for support - that is not the case in all countries. I should mention that staff on the Support Line, chat, and also here include Marie Curie nurses as well as volunteers like me, so no matter whether you are looking for information or support on caring matters or would like to share your thoughts and worries with a friendly person, please feel free to get in touch as often as you need and in whatever medium suits you best.
Take good care,
Anke
Good evening Anke,
Thankyou for getting in touch. I work and stay in Edinburgh which is 1hr 30mins from my home in Hawick. I travelled home last night and spent all day with my brother Lee. He is so pale and very agitated. Every now and again he would say iāve had enough, i can"t move or do anything and i just want to be away. Its heart breaking, iāve cried all day. Even though he has no pain, when the nurses try to reposition him, Lee will scream in pain due to the build up of lactic acid with him being bed bound and his muscles wasting. Its awful to ask but how long will this agitation last. Lee is cathaterised and has a stoma, and both are working fine, which i suppose means things are still working. Im finding it so hard and upseting to whats going on.
Kind Regards
Fiona x
1 Like
Good afternoon Fiona,
Iām so sorry to hear that you found Lee agitated after a long journey - it sounds like this is not only upsetting but also very exhausting for you. Do you feel like you can look after yourself as well as Lee a little during this time? This could be taking a few minutes to have a cup of tea, go for a walk - no matter how short - or listening to music. It can be hard to think of oneself while caring, and little breathers like that can, in my experience, have a disproportionately soothing effect amidst everything.
I am not a health professional - just a normal person who volunteers here - but I have heard some carers for terminally ill loved ones say that their loved ones also benefit from hearing music they love, or having those who visit share good memories with them. Is that something you and Lee might try today?
I hope other readers of this thread will feel comfortable sharing their experiences with you - or maybe even just log in and āheartā your post for support.
As always, please feel free to write again.
Take care,
Anke
Good Afternoon Anke,
I am still working and visiting days off. My mum is 80yrs old, looking after my brother at home as well as my dad. My mother has been quite nasty to me off and on as iām not there all the time. I find it too upsetting to be there all the time seeing my brother fade away, so i continue to work. My wee brother and i are so close. I know my mum is grieving but so am i and its really hurtful when she says nasty things to me.
Thankyou for listening Anke.
xxx
Good morning Fiona,
Thank you for writing a bit more about your situation. It sounds like this is rather intense for everyone involved. You are aware that your mum is dealing with her emotions and the care for your brother and father. Her reactions to you nevertheless feel hurtful to you, and that is completely understandable. We hear this quite often - family dynamics can change when someone is terminally ill, and there is no right or wrong way to feel in this situation. (Marie Curie has put together some information on this on this webpage.)
It can be difficult to look after oneās own basic needs, like meals, sleep, and having some time to oneself. This is, however, important - both for yourself, and for your support for your family. It has often been said that you cannot pour from an empty cup. Can you maybe start with one aspect, even if it is only a nice cup of tea, to do something for yourself today?
Take good care,
Anke
Good evening Anke,
Thankyou again for listening. Leeās doctor has been brilliant also, coming up to see him every day and even weekends. She put his medication for agitation up today so hopefully this will help. I just have an awful feeling that my brother will pass away this week and iām ready to rush home when things change.
Kind Regards
Fiona x
Good Afternoon Anke,
My mum has phoned me to say the doctor has been in today and increased the medication for agitation. The doctor thinks that the cancer may have spread to the brain due to how Lee is acting. My brother is only 53yrs and i really wish it was me as iām 56yrs and done loads throughout my life. I asked my mum if i should come home now and she said no and is being so awful to me. I canāt stand it. Sorry to land all this on you but i feel you listen. Kind Regards
Fiona x
Good afternoon Fiona,
We are so sorry to hear about Leeās condition. Thank you for writing and reaching out again. It may not feel like it, but it sounds like you are continuing to show strength throughout this process. Not being near physically your brother at this time and dealing with new information would be difficult under the best of circumstances. You also negotiate conversations with family and gauging when to go visit. There is no right or wrong way to feel about this, and your emotions are a natural reaction. It may be a comfort that, from what you are saying, Lee has a good medical and nursing team looking after him?
It continues to be important to look after yourself at this time, especially your meals, sleep, and taking breaks either alone or seeing or talking to a friend, if possible. You may also find it beneficial to read about anticipatory grief here. And please do stay in touch if that feels comfortable.
I also hope that other readers of this thread can send you some support. There will undoubtedly be others who recognise elements of what you are experiencing right now.
Take good care,
Anke
Hi Fiona
Iām so sorry to hear about your brother at this time. I can only imagine what you must be going through. It is absolutely understandable to feel the way you do and with tensions high with the family, this can be an added layer to navigate.
Please take comfort in that your brother will know you are there and very much appreciate your visits, it seems as though the nurses and doctors are reviewing your brother daily to try and get on top of symptoms.
Whatās really important at this time and often pushed to the side, is taking respite periods to look after yourself. Carer fatigue is a big factor and itās vital that you take time for a breather and a cup of tea away and not to feel guilty about this. Itās also healthy that you are taking the time to seek support in Marie Curie. I know they can also offer overnight support with the team, whom would sit in with your brother and give you and your family that important respite time. Is this something you would consider?
Take care
Jenny
1 Like
Hi Fiona
Iām sorry to hear about your brother. This must be such a traumatic time for you and your family.
My uncle got bowel cancer at a similar age and it also spread to his brain.
As said by others, please take time out when possible and look after yourself. Support from Marie curie has been set out and I hope it helps should you wish to use it.
Pat
Good evening Anke,
Thankyou so much again for your support. It means so much to me.
Thankyou
Fiona x
Good evening Jenny,
Thankyou so much for your support, it means so much to me. Iāve never had anyone so close to me with cancer and just waiting for my brother to pass away.
Thankyou
Fiona x
Good evening Pat,
Thankyou so much for your support. Its very comforting to know that people are reading my post and Iām not alone. I often wonder why this has happened to my little brother.
Thankyou
Fiona x
1 Like
It breaks my heart to read this. You are absolutely not alone. You have support from the Marie Curie team day or night.
You are absolutely doing amazing, take it day by day and look after you.
All the best
Jenny
Hi Fiona
I am so very glad that you have reached out in such a difficult time for you, with emotions running high in every direction I`m sure.
The one reassuring thing is that you are truly not alone, and can vent your feelings in this safe environment whenever you feel the need. Talking about how things are going also helps keep things in perspective when it all seems so overwhelming. I guess also dealing with Mum`s feelings of resentment towards you also adds even more stress, and I do hope she too has someone she can speak to, whether it be in the care profession or personal friends etc. I cared for my dear Mum for over six years whilst she fought terminal cancer and therefore can truly empathise with how you are feeling. Not knowing how long you may have with Lee and seeing him in such an agitated state at such a critical time is distressing so I hope upping his medication with give him some respite. As Anke suggested, music can be very theraputic for you both - is Lee into any particular genre? Please keep us posted on how you are, our thoughts are with you.
Yvonne1
Good Afternoon Yvonne, everyone has been so nice and i really appreciate hearing peoples experiences and views. I just feel i cant do anything right and every time i visit my mother has a go and says really nasty things. The other day on the phone she said that Lee had said āFiona dosenāt like meā. Which i find hard to believe as we are so close and been through a lot together with mum and dad not getting on for years. Just so nasty. I just donāt know what to do, feel guilty if i donāt visit as i work 1hr 30 away and she jus has a go everytime i visit. The sad thing is i own the family home. Thankyou for listening.
Fiona x
Good evening Yvonne and all iāve spoke to.
Just spoke to my mum. She had to get nursing team up as my brother really agitated and midazolam put into driver. Lee is now sleeping but feels really cold. Is this final stages and should i be heading home.
Kind Regards
Fiona xx