Coping with Terminal Illness

noonesperfect

miserly_mum wrote: »

saxy1 wrote: »

Have been plucking up the courage to post this for a while, so please be gentle with me.

My mum has just been diagnosed with a terminal illness and I'm not coping with things very well at the moment.

If anyone can offer any advise or experience I would be most grateful.

thanks[/QUOTE

My Mum died 4 years ago from Ovarian cancer.

We found out about 15 months before she died and it was a big blow for me and the kids as I am an only child and she and I were very close.

This may sound odd, but in a way knowing someone is dying has its advantages.

It means you can spend quality time with them and learn to come to terms with losing them

You can do and say stuff you would probably never have got around to in normal day to day life, its easy to forget to tell someone we love them and just assume they know.

I don;t know what condition you Mum has but not every day will be a bad day and most days will be so normal you forget theres even a problem.

Use these days to do nice family stuff together. Its memories of those days that will make things more bareable when she is no longer with you,

I would also say try to keep your sense of humour, it really does get you through the bad times, especially if you have children.

It must be awful to lose someone very suddenly and never get the chance to say goodbye so try to make use of the time you have together to do happy stuff

First of all ((((((((((hugs)))))))))):grouphug:

I second all of what miserly_mum says.

I don't really know how motor neurone disease presents itself though I realise it is a progressive disease. Like MM says, make these times as special as you can without being "over-fussy" with her.

Although I knew my Mum didn't have alot of time left it came as a tremendous shock when she collapsed and died suddenly on 29th December 2004 (it was also her 49th wedding anniversary)
I'd been to see her the day before. However, since my Dad died in 1996 I had always done my best to support her (being there for a chat every day, taking her out, on short breaks, shopping etc.)
Those are the things that will help you through and when your Mum is gone, because you will know you did you best. And you will be able to recall those times, one day, with a smile.

xxxxxxxxxxxxxxxxx

antronella

Saxy, so sorry to hear bout your mum. please make sure you and all the family get as much help as you can. If you haven't already..contact social services, they can help with personal care etc..Possibly district nurses (contacted through your GP) if not now, then in the future. The social worker can also advise on any benefits you are entitled to. They can also refer to occupational therapy for any adaptions to the home that may be needed for the future. The more input you have the more you and your mum will feel supported. I am a community nurse myself. You must look after yourself as well as your mum. Good luck xx

antronella

PS...unfortunately, Macmillan nurses only deal with cancer patients. Sure there will be a MND support group you could join, who can also give you advice and support.Try googling it. Good luck x

wolfehouse

i know quite a lot about mnd and it is only normal for you to have strong emotions when things have gotten pretty bad. i would only second that the mnd association can be of immense help. They are nice people some of whom have been there and done that and will have practical solutions for her situation as it progresses (as well as resources, a library and counselling i believe) and may have services near you.

My own approach would be to make full use of the time she has and arrange the best quality of life when she is really restricted. but i do think everyone has to find their own way.

if after she passes you're still having trouble, you can also get help with bereavement issues from cruise http://www.crusebereavementcare.org.uk/
who give free counselling and help with grief whatever the cause of bereavement.

don't forget to give yourself a bit of a break as well (some areas have stress centres which give cheap or free treatments.)

If you are caring for your mum you also qualify for your own carers assessment (from your local carers centre) to see what help you need.

sounds like it's been a lot to take in for you, and it's only right you should miss the person she was before. good you are seeking some help though.

autismmum

I am trained counsellor dealing mainly with addictions but, trained in all kinds at uni. if you need a chat do please contact me, I am off work for next 6 months due to my own berievement issues. ( standard practice so as not to damage client) but i believe i'm ok to work.

floss2

Hi, I'm sorry to hear about your mum. I've lost both my parents to cancer, my mum's had gone into her brain, so I understand about the little chats.

I still used to talk to her as though she could answer, show her photos of wher we'd been, what we'd done to my garden (as we knew she'd never see it), my kids visited (both older teenagers).

She had the opportunity to have a conversation with my now DF about taking care of me (well, he did the talking, she did the nodding!), she planned her funeral, which made things easier for us.

:grouphug:
Love Floss xx

saxy1

Thank you all.

Had awful night last night, just didnt know what to do with myself, am trying so hard to be strong, but it is so hard, I just feel a mess.

floss2

Maybe get in touch with the MND association, and see if there is any family counselling available? They will probably be able to give you some information, advice & lots of support.
Try this link for details of their support network http://www.mndassociation.org/life_with_mnd/mnd_connect.html

ALso, does you mum go to a local hospice for day visits at all? Her GP should be able to arrange this. It's not a sad place to go, they're very peaceful places, with activities for day visitors. My mum used to have massages & reflexology, did glass-painting, went on days out in the summer for pub grub....and they had a family liaison person who did counselling & would just listen as I tried to make sense of things.

Thinking of you,
Love Floss xx

saxy1

Floss - I have contacted the mnd association and they were very good, they have sent me an information pack, havent contacted my local advisor yet though. Mum has only just been diagnosed and is waiting to go back to her consultant for some medication, so it is still early days I guess.

Thanks
Saxy x

nzmegs

I have also been thru this. My Mum died in May this year and it was extremely difficult (and still is). For me tho it was different. She lived in NZ and apert from a weeks visit with her two weeks before she died, I had very little close contact. I really wish that hadn't been the case.
I would say that once you have digested the initial news, you need to make the most of all your time together. You may regret the things you were too scared to say and although she can't answer, she will be able to indicate forgiveness or happiness.
What i will say tho is that when my Mum died I actually felt more relief than anything. The waiting was over, the fear which was always there when the phone rang and the months of stress and worry were finally behind me.
I can't say the last 6 months has been easy but most of the time I am not sad. I miss our weekly chats on the phone, but i know she would never have wanted to live the limited life she was enduring before.
I hope you cope with this ok. Talking about it really does help.