Hi Lmmrose,

I am so sorry to hear about your Mum's problems and, understand how devastating this must be for all of your family. It sounds as if she has had a particularly unfortunate experience, with all of these additional complications. I lost my own Mum to secondary breast cancr, which had spread to her liver, lungs, bone and brain. That was many years ago and I am still aware of how heartbreaking  this was. 

A situation like this is never easy to cope with. It affects the whole family and is particularly difficult with the current pandemic. I am so glad that you have been fortunate enough to get her home to spend her final days amongst her loving family. All you can do is to be there for your Mum. Tell her how much you love her and don't leave anything left unsaid unsaid. Is there anything that she wants to do or anyone she wants to see? If so, you could try to help with this. Try to make the most of what time you have left instead of worrying about how much time you have left. This can be a time for making memories, if at all possible.

A prognosis is just a 'guesstimate' about how much time we have left. Many go earlier, whilst many outlive this by a long time. You don't say how old you or your Mum are, but this is a difficult situation to deal with at any stage of life.

You are all in my thoughts and prayers and I am always here for you.

Please keep in touch.

Kind regards,

Jolamine xx

Thank you so much for your reply, it's so nice to be able to just talk with people who can relate but are not involved.hope that make sense? 

I'm so sorry about u mum too.

Unfortunately mum is almost bed bound now, she is only gets up when carers come in to dress her, or to use the commode.  She always has her oxygen on too.  My mum had breast cancer a few years ago too. But with radiotherapy was able to beat it.  

All she wanted to do was get home from hospital. So I'm glad that she is there for her final days.

She turns 60 next week. So not at all old. 

It's just an incredible sad situation. 

I feel so out of control. I don't know what happens next. Or how quickly things will deteriorate. 

At the moment we can have a conversation still with her but is a little limited as her stroke. ( Or so I assume)

So just sitting with her chatting over the weekend has been presious.  But mother's day I had to say goodbye just incase. And will do now everytime I leave her. It's just so sad x

Hey [@Lmmrose]‍ 

I'm so, SO sorry to hear about your mum. Unfortunately, if you read my recent posts, your situation sounds all too familiar to me. My mum was admitted to a&e second week of January, with back pain. After numerous scans, we were told she had advanced lung cancer, which had spread to her spine, and she had to have emergency radiotherapy. Told we could maybe have some palliative chemo, but mum was put on oxygen, but then also had caught an infection. Her infection deterioated her situation so much, we were told unfortunately there was nothing they could do. She was bedbound and unable to move. This all happened in a three weeks. I found it unbelievably hard to even catch my breath, and my mum was only 55. 

You have my absolute genuine sympathy for what you're going through, and if you ever want to speak, please feel free to message me. 

The only tip that I can give to you, is when you can, spend as much time as you can with her. It's something that really I'm unbelievablely grateful for, as like you, my mum was not longer in hospital which would have been even more devastating.

I hope you have as much precious time with your mum left as you can, and I'm thinking of you, and sending lots of love your way XX

Hi,

Many of us find it easier to talk to strangers who can relate to what you are going through rather than upsetting family and friends. I can relate to your Mum's breast cancer too, as I have had 2 bouts of it in the past 11 years.

I am sure that it must be a great relief for all of you to have her home again and I hope that she can remain there without any more hospital visits. She has had a particularly rough time for someone who is only 60. I am glad to hear that she can still communicate with you following her stroke, even if this is somewhat limited. Does she know about her prognosis and, how is she coping with everthing?

You will probably find that patterns change before she finally leaves you. Although there is no hard and fast rule, most people will sleep for longer and won't want to eat or drink towards the end. Do you have nurses attending as well as carers? They will usually give you some indication as the time draws near. Make the most of these preious chats you can have with her now, as there is no telling how long she will be able to continue to talk to you for.

Please remember that we are always here for you.

Kind regards,

Jolamine xx

Thank you for your kind words.  Yes mum has had it pretty rough.  She is aware of the prognosis and seems to of accepted it. She seems to go up and down. One minute shel be in denial and spout that she won't let it beat her. The next she tells me her leaving present is I have to sort her wardrobe lol. It's good she still has her humour for now.

She does get extremely tearful. 

She doesn't have nurses come in. It's just the carers now. 

She is drinking and eating very little. But she has always done that when she wasn't well.

She seems always breathless, seems to only speak on the out breaths. But that may be copd.

She woke up feeling sick and unable to swallow yesterday. But swallowing has come back. 

They have said the lethargy and sicky feeling may be the oxygen?? 

She has a very swollen tummy, feet and left arm.

It's hard to see what is a sign of detoration anymore.

I guess thats what I was bit confused about. I think I made up in my head I'd get a warning that she was very close.  But now I only may get a call to say she's gone.  Xx

Hi,

It is good that your Mum seems to have accepted her prognosis, as some people become very fearful. The changing emotions are normal. We refer to it as a rollercoaster, as our emotions can change in a heartbeat. It is also normal to cry copiously, but this can be a good stress reliever. 

She should still have some contact with a practice nurse or Macmillan nurses. If she is feeling sick, there is medication to combat this. This is the sort of thing that a nurse would be able to help with, but carers cannot. I expect that her COPD may account for her breathlessness. If this is bad, a nurse could arrange for oxygen at home to help with her breathing.

As well as a reduction in eating and drinking, the breathing often becomes more 'rattly' towards the end. This is referred to as 'the death rattle' and, comes fairly close to the end. Do you live far away from your Mum? There can be problems with fluid retention, but again, a nurse should be able to help with this.

There are other things that you would find helpful to have in place. Has anyone arranged power of attorney for your Mum? This basically gives a named person the right to act on your Mum's behalf if she becomes incapable of making decisions for herself. She does however need to be of sound mind to be able to consent to someone taking over these responsibilities and to be able to sign consent for this.

No matter how simple and straightforward a will may seem, having a will in place saves a lot of upset and delay after a death. Nurses will often discuss whether or not a family want to put a DNR in place for a patient. This basically means that whilst they will still strive to keep the patient alive, they will not resucitate the patient. Many don't like the idea of this initially, but eventually decide that it is more humane than keeping a loved one who you know is suffering alive without any quality of life.

I am so sorry to mention these when you are already facing such a distressing situation. Please try to get some medical input in to your Mum's care, as this is likely to ensure a more comfortable passing for her.

Kind regards,

Jolamine xx

Thank you for your reply. 

Mum is already on oxygen at homes. She doesn't come off it as her stats drop rapidly without it. 

Macmillan are in contact via phone, and a district nurse came out last week and said it's now taken over by palletive care unless they are called out. I'm hoping she will have someone out soon. Coz she doesn't seem comfortable. And has quite a lot of pain. She has lots of meds to take to help with it.  Painkiller, 2 dif morphines,Plus antibiotics.

They have a will and power of eterny all in place.so that is sorted. 

  I live 2 hours away. So not local. 

Mum has a dnr in place too. 

HI,

I am glad to hear that you have all of the necessary paperwork in place, as many people don't think of these when placed in this situation. It might be worth phoning your district nurse again to let them know that your Mum is still in some discomfort and, that you havent heard anything from the palliative care team yet.

It must be difficult for you when you live such a distance away. Do you have any other siblings, or is it just you and your Dad?

Kind regards,

Jolamine xx