Hi Sighill,

I am so sorry to hear of your current circumstances. This is a particularly hard and heartbreaking time. I have been through it with my own mum. While you have her try to  get past the fact that you are losing her and support her as much as you can. Tell her how much you love her and don't leave anything left unsaid. 65 is certainly not old, but sadly cancer is no respector of age.

Do you have any help or support to care for her or are you trying to do this on your own? In situations like this, you somehow or other find the strength to get through this ordeal, but it helps tremendously to have someone to support you.

Thinking of you both and I sincerely hope that your mum's tiredness settles down soon. Please keep in touch. We are always here for you.

Kind regards,

Jolamine xx

Thank you for the kind words Jolamine. It means a lot knowing that there are people who can support you through this. I do have some support. My sister comes round and helps out. My father is at home but he is disabled so not able to do much. I know you are right about appreciating my mum while she's here. I do always tell her how much she means to me all the time and I appreciate every minute I can spend with her. It's so difficult thinking of what will happen in the future without her. I can't bear the thought of living without her. She's everything to me and I don't want to imagine her not being here. I think everything will be so empty. I think the pain of seeing her get worse is unlike anything I've ever felt before. It physically hurts, I have never felt pain like it. I am trying best to get through it and enjoy the time I can spend with her. Thank you so much for the support, it means a lot. X

Hi Simon,

I hope that your sister manages to make some headway with social services tomorrow and that your mum can get home soon. I'm sure that your mum will be delighted to see a familiar face in person. What an awful year we've had, when we cannot even visit our loved ones in hospital! It is easy to get confused in hospital, where one day seems the same as the next. In better times we would have visiting times and relatives to keep us right.

I'm glad that you managed to speak to her tonight, even though I can tell that you are upset by her confusion. Confusion can come with cancer, but here's hoping that this is more to do with the constraints of the pandemic than anything else.

You should certainly have a chat with your doctor about re-visiting your condition after so long. Be prepared to insist on getting a referral to get this investigated, as it is all too easy for GP's to let sleeping dogs lie, but it's not them who have to deal with this day in day out.

Jolamine xx

Hi Jolamine, thank you for the kind words. Hopefully we find out more tomorrow and we can start to begin getting mum home. Yeah I'm glad that she will finally be able to see a familiar face. It's awful what's happening with this pandemic. I really feel for all the people who are suffering with this, it really doesn't seem fair. Any other time we would be with our loved ones every chance we got as you said. I am a little worried about the confusion but as you said when you are in hospital every day can feel the same and you don't really know what time it is. Hopefully it is just that she has been resting and was a little groggy when I asked. 

I will do, I know doctors do like to push things to one side if they can. You seem to have to really work to get things done. I will definitely push though, as you said it's easy to do nothing but another to live with it. It can be quite difficult. Thank you again Jolamine. X

Simon 

Hi Jolamine, I just got some awful news. My sister was supposed to be going to find out when my mum could go home but my mum had been put on oxygen. She was having trouble breathing. When they checked they found out her lung had collapsed and the stent they put in was no longer working. They were going to see whether they could drain some fluid from her lung but once she had a scan they found out that she had had a heart attack. The doctor them said there's nothing more they can do and my mum said can I go home. We have just had oxygen and a bed delivered and she is coming home tonight hopefully. I am absolutely devastated and partly numb. I just keep crying. I jist want to be with her. They asked the doctor how long she had left and she just said not long. I don't know whether that means days or weeks. This Is so heartbreaking, I feel like my world has just stopped and I'm struggling to function. X

Oh Simon,

I am so sorry to hear this, but I am glad to hear that your mum is managing to get home. It sounds as if they have been quick to deliver the hospital bed and oxygen and I hope that they have put a care package together for her too. It sounds as if your mum is being strong about this and is still able to express her wishes, when she asked to get home.

 You will feel absolutely devastated, but you will need to be the strong one for your mum from now on in. It is so hard to cope when you know that there's not long left, but at least she is home with the family again. I'm sure that you'll all find it easier having her in the midst of the family again - so much better than not being able to even visit your mum in hospital. It is hard to know whether it is days or weeks and, this is something which we all want to know at this stage.

It goes without saying that I am always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, thank you for your kind words. My mum is home now. I am still shocked but it is good to have her home. I feel like there is a little more calmness now as I can help her. It is such a terrible feeling when you cant see your loved ones. It almost feels like a reassurance that she's here now. The hospital and doctors did amazing. They got the oxygen here within 3 hours and the bed was there at night. I was so happy to see my mum, the relief was huge.

It is hard when you don't know how long you have left. I just want to enjoy the time we have, how ever long it will be I know it won't be long but I do feel lucky to have her home where she wanted to be. My mum is a lot happier at home which makes it easier for me. I am a bit worried everytime I walk out of the room but I guess that's normal. I'm sleeping with her and my sister is round too to support. We have had lots of support, the district nurses and carers are coming round 4 times a day which is good. Hopefully my mum can stay pain free. Thank you so much for the support Jolamine. X

Simon

Hi Simon,

I am so glad to hear that your mum did get home last night and I expect that you are all feeling much happier about this. It is so hard when you cannot visit a loved one in hospital, but all the more difficult when you know that the time is limited. There is always the knowledge that they could pass without any of the family being present - I expect that this was a scary possibility for your mum, as well as for the rest of the family. The hospital has done well to arrange all the necessary contingencies and to get her home as quickly as it did - it just shows that they can move when they want to!

You know that your time togethe is finite, so I'm delighted to hear that you want to make the most of whatever time you have left. If there's anything that you want to speak to your mum about, make sure to do it soon, as there may come a time when she speaks less and less and sleeps a lot more. I hope that her confusion is not so obvious, now that she is back home again.

How is your dad coping with having the carers in 4 times a day? We had this with my mother-in-law and, although my father-in-law found it an intrusion, he couldn't have managed without them at the end. Keep an eye on your mum's pain levels. If you don't feel that her medication is managing this, mention this to the nurses, as they should be able to keep her comfortable, provided that they're aware of the need to do so.

I sincerely hope that you can all get some quality time now that you are all together again.

Kind regards,

Jolamine xx

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 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 Jolamine, I'm so sorry you had to go trough that, it must have been a horrendous time for you. You must be a very brave person. My condolences for the loss of your loved ones. Your brother-in-law must have been a terrible shock for you. Life seems so cruel and unfair at times. You must be a very kind caring person to help others when they are in need. I do appreciate all the support you have given me.

It is hard to watch mum not eat but I do understand that she doesn't need food at this point. It feels so hard to not protect her, I want her to feel ok and I know I can't do anything to help her apart from comfort her. It feels so hard at times, the emotions are unbearable. I just end up crying then stopping then starting again. I am trying to make the most of the time. It just feels so hard with whats about to come. I do know these are precious times. My mum has now been put on a syringe driver. She started to get a little agitated the other night so we called the Macmillan nurses and they gave her a sedative. She's still getting a few words out but it's just a word or two. She does sometimes wake up and wants things that we can't understand which is very distressing as I just want to help her. I understand this can happen though. I love her so much I just want her to be ok. As long as she isn't in pain I will be ok. Thank you Jolamine. 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

Oh Simon!

I thought that something might be amiss when I never heard from you yesterday. I am so sorry to hear this and send you and your family my sincerest sympathy.

You will feel relieved that you and your sister were with your mum right to the end and, I'm sure that your mum got great comfort from this too. You were all fortunate to be together at the end, as there are many people in the world who haven't managed to be with loved ones due to the pandemic. I am so glad that your mum got out of hospital when she did.

I know that you didn't want to let her go, but it is just as well that her passing wasn't too prolonged or her pain too drawn out, as this only adds to the agony. It is always difficult to let the funeral directors take over, especially when you have all been so involved in her care throughout the past few days.

It sounds as if your mum was strong for you all right up to the end and, it is now your turn to show the same strength, although I know that your world has been turned upside down. Your mum would not want you to be miserable.

There is absolutely no need to thank me, I am pleased to hear that I was able to help in some small way. I only wish that I could take your pain away. The next few days will probably pass in a blur, as you make funeral arrangements and deal with your mum's affairs, but rest assured that I am still here for you and, I am here any time you want to talk.

Thinking of you and your family.

Jolamine xx

Hi Jolamine, thank you for your kind words. I do appreciate that we could be with her at the end. It's what she wanted and I know at this terrible time lots of people are unable to be with their loved ones. I am thankful for that. If mum had of been stuck in hospital I don't know what I would have done. I was out of my mind with worry. 

My mum was so strong and battled right up till the end, she's my hero. I did want her to stay but I know that is selfish. She needed to rest and we had to let her go. The worst thing I can think of is her in pain so I know it was time even though it's so hard to let go. I didn't feel ready but I'm sure no one ever does. It was difficult with the funeral directors, I know they have a job to do but it felt awful to let her leave. I wanted to be with her and protect her but I know I did that as best I could. I am trying to be strong. The first day was tough, I couldn't stop crying. Today has been a little less. I know this is a long road and to just take each day as it comes. It's too much to look too far ahead now, I can't get my head around her not being here. I know she is looking over me and I am sure that she will guide me wherever I am.

I do want to thank you Jolamine, you have been a tower of strength at a time when I was lost. Your support helped me feel like I wasn't lost and alone. What you did means so much to me and I will always be grateful for your support. I do imagine there will be lots of things going on. There's already phone calls and things that need to be sorted. I don't think you get a time to stop and reflect until after. I am going to try and stay as positive as possible and just take one day at a time. Thank you again Jolamine, your continued support means so much. X

Simon