Hi LizJessie, thinking of you and hoping you are ok.  How are you and your partner going?  Have doctors been able to provide you with information about your partners health?  Big hugs sent your way.  ❤️ ... View more

Sorry to hear about your mum lin78.  My husband was diagnosed with pancreatic cancer in October 2019, it had spread to his liver prior to diagnosis.  Sending my love to both you and your mum. ❤️ ... View more

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as Budgie said, you need to bite the bullet and start the conversation.  there will be tears for everyone which is to be expected.  I am an only child also and both my parents are deceased, my dad died when I was 27, my mum when I was in my early 40's.  I lost my husband to cancer in April 2020.  I have no regrets over things done or not done but, thinking back over the years I know it would have been beneficial for us as a family to have talked about final days.  I had a large involvement into the planning of both of my parents funerals plus that of my husbands.    One of the hardest things for me with planning my parents funerals was I didn't know what they would have wanted.  not long after my husband received his diagnosis he said he wanted to do pre-paid funeral to try to take some stress of me plus there was things he wanted to have played or said.  I am so thankful to him that we planned his funeral and outline of his eulogy together.  With it just now being me, I have no children, plus knowing what things I want to be said, music to be played etc whenever my time comes I am in the process of meeting with funeral director to discuss my prepaid funeral and what I want to happen on the day.   to me a funeral is the celebration of our loved ones life ..... who else is better to tell their story and decide how to celebrate that life than the person themselves.    during the last couple of months of my husbands life he and I talked about what life was going to be like for me after he was gone.  it gave him a chance to also express his worries and concerns which he needed to be able to share with me.  he used to say he was scared about who was going to be on the other side so we used to talk about our respective family members who have already passed away and would be waiting to welcome him to his new home, something we both found gave us a feeling of peace.  there was many tears during these conversations, similar writing these words I find myself in tears.  The things related to death and dying that lots of people struggle with is means we are saying a final goodbye to someone who we deeply love that we will never be able to see or hear again in our life .   lots of hospitals have social workers and chaplains that, if your mum is in hospital could come and have a chat with you all as a family.  some towns also have Pallative Care units and there is usually a counsellor specifically trained to talk to patients and family members during these times.  It is not a pleasant or nice conversation but death is something that comes to us all when it is our time.  the quicker you can start the conversation the better   take care         ... View more

Thinking of you today and sending positive thoughts to you. ❤️❤️ ... View more

some things I learnt due during the last 14 months  - ask lots of questions and keep asking questions - take some time away from the situation for one self and do something just for one self - never let medical trained staff make all the decisions, especially when not happy with those decisions   ... View more

I know I am gradually healing and that it will take time.   Thank you for your kind words   Thinking of you - always happy to chat     ... View more

Most hospitals have social workers who I found are a great source of info plus some one to talk to.  Social worker we dealt with referred me to Carers support group linked to public health scheme in our town.  He run through various questions to get an idea of our situation and possible help as time went on.  Lots of hospitals also have a chaplain that can come and talk to your  partner if he wishes, I found nurses were the people that offered this to my husband. I am also employed by services Australia and have used EAP. You can phone them direct and only need to advise management if you need time off work for appointment.   Hoping you have supportive manager etc.   I mentioned doing things as a family as my husbands cancer stole almost all opportunity for us to do these things.  Is good he is happy to be in photos they will add to the memories your family has of him. My mum lived to be almost 80years and I cherish all the photos I have of my parents.   i apologise if reading the words palliative care caused you upset. So many people, myself included prior to 12mths ago, only have knowledge of palliative care helping as some ones health gets worse.  From discussion with 2 wonderful staff in emergency section of my local hospital 12mths ago I learnt that palliative care is intended to help and support cancer patient and their family members from as soon after diagnosis as possible.  My husband said to his oncologist about it and the oncologist did the referral.   just a thought about the AFL ..... ( if he doesn’t already have) would your partner like a jumper or football signed by the players?  This might be something the local team might be willing to do for yourselves due to the Aspergers and cancer.   take care   ... View more

Hi LizJessie, sorry to hear about your partner.  I live in VIC so don’t know what is in your local area up things you could investigate are   for you - for some one to talk to, one option is palliative care counsellor - some employers provide counsellors for their staff - Carer Australia - there may be local Carer support team through your local hospital - keep in contact with your friends and go out with them on semi regular basis - talk to your local dr   for your children - family dr may be able to talk with them - school counsellor can talk with them after school start   For practical things - finds things that as a family you enjoy and start to do them when possible - do things to give everyone lasting memories including photoss, something lots of people don’t do regardless their age or health.     hope you don’t mind me asking - what stopped your daughter giving your partner the birthday card?     hope to hear from you again         ... View more

I fully agree with your comment about “not being treated as a doormat”. This was something I struggled with and nurses in general hospital ward didn’t help the situation. There were days during his various hospital admissions that my husband would get angry with me when things weren’t going the way he wanted, also when he was scared. Staff in general hospital wards used to tell me I had to understand he was physically and mentally unwell and may be it was best I not visit him in hospital. Nurses in oncology wards were much more understanding and suggested I laid the ground rules and walk out of his room when rules were broken. First couple of times i told him I had had enough and was going home it wasn’t easy to walk out on him but knowing I had support from nurses i found over time it was less stressful on me than to have stayed in his room and been receiptient of his moods ... View more