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Newbie.Caring4 my Mum who has Mesothelioma (Asbestos Cancer) - Carers UK Forum

Newbie.Caring4 my Mum who has Mesothelioma (Asbestos Cancer)

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Hi there!

My name is Sarah, and I am 26 (will be Tuesday 16th July)

I have just started caring for my Mum, who has been diagnosed with Mesothelioma (cancer caused by asbestos).

I have three children (7, 6 and 2).

We all live together, along with my Dad (step-Dad - however he's as good as) and my little sister (17).

I have two things that I am concerned about:

The first thing is that, before we found out that it was Mesothelioma (we were told it was definatley cancer, it was either breast, lung or asbestosis, but they had to find out which one), I was very very upset and cried and cried. However, since we found out it was what the doctors called the worst one out of the three (not that any of them are in any way better for the person diagnosed, Mesothelioma is the worst one for prognosis e.g. 40% of people only live over a year from diagnosis), I have not once cried, got upset, angry or any of the emotions that I have read are normal. I do not feel anything. Somehow I have managed to carry on as before being a Mum to my children and also now looking after Mum. My Mum has always been my rock and my best friend. So why do I not feel anything? Is this normal? Everyone around me is crumbling, why am I not?

The second thing is, as I just said everyone around me is crumbling. My Dad, my little sister, my older brother (who does not live with us) etc... How do I support them and make them feel better? I see my Dad crying, and I do not know what to say to him. My little sister, I know she's bottling everything up and cries herself to sleep. How am I supposed to make it all okay for them?

Thank You for reading and if you reply thank you in advance.

Sarah x

p.s. I have had enough people say "I'm sorry" etc... and I don't want pity or sympathy, Just good solid advice or suggestions. x
Hi Sarah, you are in shock and your system has closed down. When my dad died unexpectedly from a heart attack I did the same. Dry eyed and comforting everyone else around me - I organised the funeral and everything. People said how brave I was, but really I felt numb. It felt like I was acting in a film and half expected people to jump out saying "cut, cut, we need to do that bit again" Image
Be gentle on yourself and dont beat yourself up over it, the grief will come out eventually.
Are you allowed a hug? ((((((hugs)))) anyway.
Hi Sarah,
Sorry to hear about your mum's illness. Your time to cry will come, you can't "make it better" for the others, we all have our own journey through this sort of thing, allow everyone to cry if they need to, saying little, offering a hug and a cuppa is my way of handling horrible situations, a simple demonstration of caring. When my husband died suddenly, sometimes I was the strong one, sometimes it was my son. If one of us was having a bad day, we just understood. Knowing that we were there for each other was enough, we couldn't put thoughts into words for a long time. You asked for practical advice. Has anyone talked to you about support services, benefits etc. yet? My dad had prostate cancer, and our local hospice had all sorts of services which helped, so although mum was very disabled, he was home apart from the last few days. Has anyone talked about a Macmillan nurse? Did you know that there are special "fast track" arrangements for DLA to be paid to someone who is terminally ill and life expectancy is under 6 months? It can be claimed by a relative without the person concerned knowing, to help with extra costs. Ask your mum's GP about Continuing Care - free care at home funded by the NHS. Do you know if mum wants to end her days at home? If so, where would she sleep, bathe, use the toilet? Has she made a will? Is there anything special she would like to do while there is still time? If she has a life insurance policy, that might be payable now, in view of the terminal diagnosis. Which funeral director will you use? Is there anyone who you can leave your children with at short notice/take them to school etc. should you need to? I believe that there is a special fund for asbestosis sufferers, but can't remember the full details. If your mum can work out when she came into contact with asbestos, at work, or her father's work clothes, etc. she might be able to make a claim against the company concerned.
Hey, thank you for the replies.

I am so sorry about both of your Dad's.

It is nice to know that this is a normal reaction as I was worried that it was because I didn't care enough. Does this mean that when I do finally feel something, it is going to be too much? That is what also worries me, that I am going to one day just crack and not be able to cope.

bowlingbun - My kids' dad has come back to live here with us now (happened today). So I now have someone here to help with the kids as and when I need it. All payments are either through or on their way, so money is not a problem now. Image

Continuing care? That sounds exactly the thing that we will need, I know my Mum wants to be home as much as she can, and I'm hoping she will be able to die here at home. We have everything set up for her to stay here. My Mum's Mother had Mesothelioma, and we are living in the house she died in. My Granddad adapted the house so that my Nana could cope here with her illness until the end. He added a toilet downstairs as she was unable to climb stairs due to being so short of breath. Conservatory etc...

With the continuing care, will they let her die here, at home or will they want her in a hospital or hospice?

Thank you in advance

Sarah x
It is nice to know that this is a normal reaction as I was worried that it was because I didn't care enough. Does this mean that when I do finally feel something, it is going to be too much? That is what also worries me, that I am going to one day just crack and not be able to cope.
Dont worry, your body will know when it is safe to start grieving. Yes it might come in a flood, but dont try and be strong or hold back the tears - grieving is a continuing process.
Im glad you have someone to help you with the kids, that will make life a little easier.
Im afraid, I dont know much about continuing care or Macmillan nurses, but why dont you talk to the doctors about this?
Dont worry, your body will know when it is safe to start grieving. Yes it might come in a flood, but dont try and be strong or hold back the tears - grieving is a continuing process.
I know this may be rather personal, and if you are uncomfortable answering - don't. How long did it take you to "get over" your Dad's death? I know that it is something that a person never completely gets over, what I mean is: How long did it take before you felt as though you could, you know do the dishes, the washing, go to work etc...?

Yes, I think I will, I keep reading about Macmillan Nurses but we haven't had any one get in contact yet, and Mum starts chemotherapy Monday/ Tuesday. The hospital and Mum's GP have been really good at making sure Mum is not in any pain, and giving her any medication she needs. I just feel as though (after reading the leaflets they gave us) that they could be giving us a bit more support and/ or information. For example I have asked the inevitable question "how long has she got left?" and they won't say. They are saying that it varies so much person to person and every one is different etc... but surely they have an idea as to what stage she is at? I mean she has had 2 CT scans, at least ten x-rays, fluid drained from her left lung and a biopsy.

Thanks

Sarah xx
Hi Sarah[quote]ow long did it take you to "get over" your Dad's death? I know that it is something that a person never completely gets over, what I mean is]
I went around in a daze for a few months - not helped by the fact that I was pregnant when my dad died (I was convinced that I would give birth to a still-born, but that was just an illusion from the grief, I gave birth to a perfectly healthy boy). Once I started grieving there were many days when I just seemed to cry a lot, but I was never at the stage when I was unable to look after my son, get dinner etc. I went back to work part-time when he was several months old. It is different for everyone though, so it may not be exactly like that for you.
There is a section for former carers where people who are grieving can post. I dont know whether you would find it helpful to read some of it, or whether it will be too much information at the moment.
Hi Sarah, I've lost too many people I have loved, grieving never stopped me doing the basics, like cooking, housework etc. but it was more of a huge sadness. Each grieving was slightly different, I'm a very practical person, when all the practicalities were over, letters written, etc. etc. then I just felt very very very tired and couldn't be bothered to do anything other than the basics. Try not to be too frightened, you are stronger than you think, and don't be afraid to say when you are struggling and would like more help. Once you have worked out a plan in your head, and perhaps written it down, who is going to do what, where, when, how, then you can put it aside and enjoy as much as possible the time you have left. This is a very special time. When dad was in the hospice, drifting in and out of consciousness, mum and I chatted about things we had done when my brother and I were little. I asked mum what grew in the large greenhouse we used to walk past on the way to the beach, when we thought dad was asleep. "Grapes" came his immediate reply, so he'd obviously been listening, but with eyes shut. Mum might enjoy looking through some old photo albums, for example, re reading a favourite book, listening to her favourite tunes. When dad was clearly seriously ill, his GP refused to talk to me about time left, but I rang up BACUP and they were very open and honest. They asked me what symptoms dad had, treatment, and told me how long they thought he had, right within a week or two. They answered all my questions. You might find it useful to speak to them. Continuing Care assessments are done by your local health authority, there have been so many changes in the NHS recently I'm not exactly sure who is responsible, but ask your GP or Practice Manager to find out for you. Last, but by no means least, make sure you have some "me" time arranged, perhaps an afternoon a week. It's really important that you look after yourself, as well as everyone else.