Hi Jolamine, yes I think the relief of getting her home was huge. I know it's going to be tough but I just want to try and make the most of it. I know that she could become more and more sleepy. I try not to think about it to much but I know I need to say everything I want to now. Her confusion doesn't seem as bad so hopefully she can stay like that for as long as possible. I think being in the hospital was too much for her. She said she couldn't take it any more. 

My dad is ok, he's not really getting too involved. He's not a big fan of carers but  as it's just for my mum he doesn't really mind and accepts it. I'm sorry your Father in Law didn't like it. We get a lot of visits and it feels like my mum is getting more tired but I know that is natural. She is managing ok for pain at the moment. I will be sure to tell the nurses if anything changes. We are just trying to make her breathing comfortable as she constantly feels hot. We have a fan next to her and are using a cold rag to cool her down. I feel happy that I'm spending time with her but sad that's she's dying. It's a whole mix of emotions. It's too much to process but I know I need to take one thing at a time.Thank you for everything Jolamine, your support means a lot to me. X

Simon

Hi Simon,

The relief of getting your mum home must be tremendous. I can fully understand how your mum felt when she was in hospital. My in-laws were in a one-bedroomed sheltered housing flat at the time, so there was really nowhere for my father-in-law to escape to when the carers were in. He wasn't all that fit at the time, so couldn't go out for a walk. At 97 he was having a lot of back pain. We had him to the doctors 5 times about this and they kept saying that it was just arthritis. Eventually, on the 5th visit, a GP said that he wanted him to get assessed at the day hospital and, referred him within 2 days. He was diagnosed with cancer throughout his body that day and died 5 days later, just 3 months after we lost my mother-in-law.

Your mum will get more tired with time. She will also posssibly eat and drink less and less, but this is all part of the dying process. You may also find that she evenually appears unresponsive, but if this happens, remember that the hearing is one of the last senses to go, so don't stop talking to her. She will still be able to hear you. Yes, there will be a whole mix of emotions there for you, but remember to deal with one thing at a time, as it is just too much to cope with everything at once.

Wishing you the strength to get through this.

Kind regards,

Jolamine xx

Hi Jolamine I'm so sorry to hear you went through that. It is so difficult to lose one person but two that quick is awful. It must have been horrendous for you. My mum is ok but she is very tired and she doesn't seem to be eating anything. She has tiny sips of water but now she's not really able to take her medication. She is having difficulty swallowing. The District nurse told us that her skin has some mottling which I believe is a sign that the end is near. Sometimes I'm ok and other times I breakdown. I know I am lucky to have this time with her. She is so brave and I'm so proud of her. I am scared of when she can't talk to me. I know that will be it. I just can't bear the pain of her going. I know she has to go and it's her time, it just hurts so much. I am trying to take one thing at a time as I can't process everything as I know it's too much to do. Thank you so much for the support Jolamine. X

Simon

Hi Simon,

2019 was a particularly difficult year for my family. We lost seven close relatives that year. The last straw was just after my father-in-law passed and my brother-in-law, who was only 52 and had always been perfectly healthy, was found dead in bed. We held a post mortem, but the cause of death was inconclusive. He was the youngest of 3 brothers, so, as you can imagine, this came as quite a shock.

I know that it is hard to see your mum not eating, but this is all part of the process. There may not come a time when she cannot talk to you, but it could happen. My mum was talking lucidly until 5 minutes before she passed. I know just how awful this situation is and how much it hurts, but concentrate on looking after your mum for now. I am sure that, despite her bravery, she will still be worried about leaving the family behind. Tell her of your hopes for the future and reassure her of how you are going to cope once she is no longer here.

Can the nurse give your mum her medication in liquid form? This might help if she cannot take her medication.

Don't look any further than tomorrow. There will unfortunately, be more than enough time to grieve once she has passed.

I am always here for you.

Kind regards,

Jolamine xx

Hi an so sorry to here even though you going through this. I am 64 an live with my daughter an 2 grandsons age 15 an 14. Have 3 daughters who were devastated when we were told I had stage 4 oesophageal tumour an spread to stomach nodes an slightly on liver. Told 3/6 months without treatment or 1 year with. Chemo didn't go well so had to be stopped after 4 days but had radiotherapy an that has shrunk tumour so can eat well now. My grandson 15 isn't coping well at school an I am at a loss what to say to him as he is sad that he doesn't know how long is nan is going to be here for. Try to reassure him I am well at moment. I j is my daughter is on an emotional roller coaster too. 
I did feel very tired during radiotherapy and had side effects after for 2 weeks. Twice ended up on drip which made me feel so much better an enabled me to fight back. Each day the tiredness has got less an now managing to take dogs for short walk. Hope they can sort medication out to keep your mum comfortable an yes just let her know your there. I will only take one day at a time but I also understand how awful this is for my family to be going through this too. Stay strong x

Hello JaniceMe, I'm very sorry to hear you are going through this. I'm glad the radiotherapy worked and you are feeling a little less tired. It must be nice for you to walk the dogs. I do hope you continue to feel better. Thank you for the support, it is a awful time. I don't think you can understand how hard it is until you go through something like this. Nothing can prepare you for the heartbreak you feel. We are trying to get the medications to keep her comfortable. It feels like an impossible task to watch your mum deteriorate in front of you. The most important person in the world who I adore with all my heart. It is so tough. Thank you, you stay strong too and I hope you continue to feel better. X

Simon

Hi Simon,

Has your mum totally stopped eating or is she getting any build up drinks? This is so very hard to watch, but we all reach a stage when we don't need food. You are doing more than you realise by just being there for her and trying to comfort her.

I hope that the syringe driver is making her pain free now. The agitation, reduction in speech and difficulty in communicating what she is trying to say is, I'm afraid are all part of the process. I am glad to hear that you have the Macmillan nurses on call and that they were able to come and settle you mum the other night.

Thinking of you all.

Jolamine xx

Hi Jolamine, she has stopped eating totally now. We were giving her sips of water and trying to make her feel better but the hospice nurses said we really need to stop giving her anything as she doesn't need it. That was really hard to take as when my mum asks for water I want to give it her and help her if I can. She had been having a couple of patches where she was getting quite restless and comfused so we called the hospice nurses out. They said she has terminal agitation. I didn't even know about that and was just trying to make her feel better any way I can. They also said she really needs to be sleeping at this point so they have been adjusting the medicine so she stays peaceful. That was difficult to take as I know she needs to be asleep now to be peaceful to move on.It is so hard but I know it's the best thing for her. Its like a rollercoaster of emotions, you can't go very far without bursting into tears. She is doing so well and fighting, she is so strong. I am happy she is at home where she wants to be. That does give me some comfort. The nurses have been really good too, we have been lucky to get such great support. Thank you Jolamine, I appreciate the kind words. It really means a lot to me. X

Simon 

Hi Jolamine, my mum passed away yesterday morning. Devastated doesn't even begin to explain how I feel. We were with her when she passed which was a comfort. Me and my sister had stayed with her for 6 and a half days caring for her and doing everything we can to make her comfortable. She was so brave and I'm so proud of her. She's the most beautiful person in the world and I will love her forever, she started with the rattle about 5am in the morning so the District Nurses came out to give her some medicine to help her throat. Her breathing became more difficult and then she passed while we were with her holding her hand at 8:05. I love her so much. We stayed with her for a little while, I found it so hard to let her go when the funeral directors turned up. I've never felt pain like it. I just want her to rest and be in no more pain. I've lost my best friend and life will never be the same. 
I want to thank you Jolamine for everything you have done. I'm glad there are people like you in the world who are there to ease others pain. Your support has been very important to me and given me real strength. Thank you for being the kind caring person you are. I know now it's the next part of my journey now, to live without my mum feels unbearable but I know I have to do it for her. She has given me strength and I know she wants me to be happy. Thank you for everything Jolamine. X

Simon