Almost 7 weeks ago, my dad arrived home from work as he usually would and even brought the bin in from out on the street… me and my mum wondered why is was taking him so long to open the back door so I said I would go and do it. When I opened the door, he was picking up all his things off the floor which I though he had just put down so he could get his keys out of his pocket, I found it a little strange when he didnt reply to me saying hello and just put it down to ‘he’s had one of those days’ when a few seconds later we heard him mumble something, again we just thought he was in a bad mood and not happy that there was some washing up in the sink still to be done… however he came to the door of the room we were in and his whole right side of his face was twitching as though he was having a stroke. My mum managed to walk him through to the living room where he proceeded to have 3 seizures, one after the other… luckily my mum knew what to do and was able to ring an ambulance as I just froze and didnt know what to do, something which I deeply regret to this day… in the midst of his first seizure, he managed to call me in to the room he was in and try reassure me that everything was going to be ok. He was taken to hospital via ambulance and was admitted to have further tests. These revealed a lesion on his brain. This has later turned out to be a stage 4 glioma and is progressing that fast that they have now decided it isnt even treatable despite promising us just 2 weeks ago that it “isnt cureable but is treatable”. Dad is just getting worse day by day and has now fully lost the use of his right side and isnt able to speak much at all… I just feel so lost and as though he is slipping away day by day… at just 21 years old, this isnt something I could of ever imagined happening, especially seen as though I already care for my mum. Dad has always been the glue to the family, the one to hold us all together and make sure everything is going to be ok, yet I now feel that in such a short space of time, the roles have reversed and I feel so alone and unsure on how to support both of my parents and my 16 year old brother… Each time I try and help I just feel as though I’m in the way and that im doing the wrong thing despite having the best intentions. I do have many friends around me and a fantastic boyfriend who supports me very well but I feel bad as he feels helpless too and like he is unable to help me in the way he normally would…
Appologies for the long story/ conversation but I have only just come across this community site and have been looking for somewhere to express how im feeling as I dont want to burden my friends and family with it as I know im not the only one going through it and that it must be far worse for mum and dad who have been to all of dads hospital appointments…
Thankyou for reading.
Dear Spanner04,
You have had so much to deal with in just 7 weeks. It must be overwhelming. It sounds like you are part of a very loving family. To have seen your dad have seizures must have been so scary. Don’t feel bad about not knowing what to do, not many people would.
You wrote that you try to help but feel you are doing the wrong thing. I am sure you are not. Just being there, and wanting to help will be such a support to your mum, your dad and your brother. It is good that you have a supportive boyfriend too. This is a very difficult time for all of you. Just try to make the most of the time you have left with your dad, telling him how much you love him and doing things for him that he likes. When my dad was at the end of his life, he just wanted to be at home with his family around him, and we found his favourite music on our phone so he could listen to that. Sometimes little things can mean such a lot.
It would be good if you could get support from outside your family as well. Recently I lost my mother-in-law to cancer and when I had a day I was struggling, I contacted a helpline and chatted with a lovely nurse. The two charities that you may want to look at if you have not already done so are MacMilllan and Marie Curie. They are there for people like your family who are faced with a terminal illness. Here are the links to their websites:
It is good that you have come to this site. I hope that you will find it helpful to read posts and replies from others in similar situation. Please feel free to post as often as you want. No need to apologise for sharing your feelings, it is the best thing to do and this a safe place where everone will understand.
xxx Jo
My sister was just 50 I lost her to a brain tumour. It was, all over even with a operation to remove the tumour within 14 weeks.
My advice is get a second opinion from another hospital. This is something my brother in law wouldn’t agree to and now well never know if the outcome would have been different. I don’t know where you’re based but christies in Manchester is a starting place.
I’m so so sorry you’re haveing to watch you’re father go through this I know how awfull it is. My sisters, daughter was just 20 when she lost her mum, my sister.
I was so sorry to read your post.
My mum was diagnosed with a grade 4 glioma last summer and died on new years eve.
I am sure you are doing a great job, just having you around must be a comfort to you Mum. All you can do is take one day at a time.
Thankyou both for your replies it really does mean a lot! We are sticking my dads motto of just trying to find brightness and joy in everyday and making sure we spend time together as a family… Dad has had a number of consultants involved in his care and to be honest I dont think its his wishes to get another opinion as he is just so tired and fed up with there being so many people involved anyway. I am starting to get support from the family support team at the hospice who are caring for him
So pleased to hear you are getting support and that you are able to look for brightness everyday
Hi everyone, I just wanted to say thankyou again for your replies it means a lot… sadly Dad passed away 2 weeks ago, he was at home and had me and mum with him right until the end xx its all been a massive whirlwind, it was only 10 weeks from when everything first started to him passing however im taking comfort in the fact he didnt have to suffer too much and that the only people who cared for him were his family and his assigned palliative care nurse as he didnt want carers coming in xx its all a massive shock and im absolutely heartbroken, especially at the fact that he isnt going to be here when I graduate in the summer however I know he will always be behind me in spirit, just like he promised when he was first diagnosed xx sorry to hear touve all been through similar xx
So sorry to hear you’re dad’s passed away.