Young Adults who have lost a parent

I joined Katrina!  :waves: (if it worked, just signed up to the meetup site so hopefully I've not done it wrong) 

How is everyone this week? 

I think I'm stuck in a strange place between sticking my head in the sand and outright despair. 

I was due to be starting a PGCE next week but have had to withdraw for this year. I think this is adding to my "lost" feeling. 

Ami 

I have joined just now. :)

Hi Bex,

I am sorry to hear about your sister, 51 is far too young. We also live in New Zealand, I'm 28 and my sister is 25. Our Dad was 54 when he passed away earlier this year from brain cancer. We have felt the same here. The local hospice has been great offering counselling free of charge however, it would be great to speak to people around our age who are in a similar situation. Hope you are all doing as well as can be.

Leah

Hi!

I hope you all don't mind me coming here as I have not actually lost a parent yet, although may as well have done. And it will not be too long (possibly for the best) before I am part of your "group". 

In brief Dad started with severe head aches back in January 2014. After a change of GP as first was useless, he finally had scans and by the end of March we had a diagnosis of lung cancer, which had spread to a small tumour in the brain. Then we received some "good" news that he had a rare form of lung cancer, which could be kept at bay with a chemo pill. He started on this and everything seemed fairly positive. 

But a month later (June 2014) he started with confusion and memory loss. The doctor put it down to a change in steroid dose but he continued to get worse. We wondered if it could be the chemo pill as started around 3 weeks after he started on this but it was not a known side effect. So the chemo pill was stopped for a couple of weeks and we organised a private MRI (too long a wait on NHS) and this showed there was no further spread of cancer and in fact the tumours had shrunk. All we got from the oncologist was that the cancer was under control and they did not know what was causing the memory loss and confusion. 

He continued to get worse until in July we had to push for him to be admitted to hospital as he could not walk well due to balance issues, he was hardly drinking, very confused and losing weight. He went to the nearest hospital which is awful and under special measures. They basically wrote him off, did not know what was wrong, said it could be a few things but none were treatable........one doctor was a right arrogant git and made a big point of saying he did not agree with us going private for a MRI scan and seeking a neurologist. At the same time they had written all over his medical notes how expensive the cancer drug was and to make sure they only used patient's own supply. Sorry I am digressing but I was disgusted by the way we were treated. 

We went private and had a neurologist see him and got him transferred to a specialist unit at another hospital. It was determined he probably had a rare auto-immune response to the cancer that has attacked his brain and brain stem. Although prion diseases like mad cows disease were also considered. There were basically 2 options - the autoimmune response was to an antigen on the cell surface, in which case they could treat with high dose steroids and/or a massive dose of intra-venous anti-globulin and a good chance there would be some improvement. But if it was a response to something inside the cells, little could be done except treating the cancer, the underlying cause. Possibly by operating to remove the primary tumour. 

He has been in hospital for nearly 4 weeks now and getting steadily worse. He hardly drinks and so often is on a drip. He is agitated and aggressive at times when he was such a quiet person. He is so confused, cannot really talk any more, does not understand what we say and in last few days, not sure he even recognises us. He has regressed to the mental state of a severely autistic child. And that is so hard to see and deal with. I can't bear to see him like that....dribbling, wetting himself, not being able to communicate. 

Today we had a meeting with the neurologist's registrar and all very bad news. But I guess not unexpected. They feel they have tried everything possible for my Dad and nothing is working. We still do not have the blood results back to definitely confirm whether it is surface or intracellular antigen but given neither steroids or IVig have given even a glimmer of improvement and he continues to get worse, it is 99.9% sure its intracellular. This means that there is little they can do apart from treat the cancer. Which is being done anyway, although he is struggling to swallow or take his pills. And there is little point in trying to remove the primary tumour as he may not cope with the operation and recovery but mainly as will not give any improvement, except to possibly, and only a small chance, stop any further degeneration. 

But in any case, the brain damage is almost certainly irreversible and so anything else would just prolong matters, if it even had any chance of controlling the auto-immune. He basically now has a very very severe dementia caused by the auto-immune response to the cancer. He barely knows who we are, cannot communicate, does not really understand us. He is very very agitated if not kept sedated. And he wanders around and falls over and bangs into things and hurts himself. This evening the hospital phoned to say he had fallen and hit his head and has an open wound. They cannot cope with him in the hospital and are getting him transferred to a physiatric unit somewhere closer to home. And basically he will live out the rest of his miserable existence doped up on sedatives to stop him hurting himself as he just bangs himself and falls over. While we wait for death which would be a blessed relief at this stage. 

Still struggling to really accept any of this, it is has been so quick and he is so young (64). And he was beating the cancer and so healthy and active and intelligent. Now we have to see if we stop the cancer treatment and let nature takes its course, hopefully quickly. Just feel so lost and helpless and angry. Still in shock and go to bed each night having to remind myself this is actually happening. 

In some ways it is like he is already dead as he is not anywhere near the person he used to be, just mentally not there at all. 

In many ways I just want all this over, to stop his suffering as he would absolutely hate to live like this, anyone would given half the chance, but now there is nothing we can do, except wait. But then death is so final. I am not religious and don't believe in any after life or anything. 

We had hoped he could at least go into a nice local nursing home, but now that does not even seem an option and he will be confined to a secure physiatric unit. 

I am in the north west of England. We were living abroad but came back when Dad got ill. It is myself and my partner (and our dogs) and my Mum (who I had a strained relationship with before this, things are better now). I have a younger brother but he also lives abroad, only comes back for a night every couple of weeks and we don't get on. My Gran is also battling cancer and has been told maybe a year, although she currently seems fairly well. My Uncle died of cancer in just 2 months late last year. We weren't close but still a shock. My other Nan is in a nursing home - infirm, deaf and blind and waiting out her days, kept alive by pills. 

It all just seems so wrong, makes life seem so very pointless in many ways...........just such sadness.......

Hi Ben,

I lost my dad last September and really struggling to move on without him. Its coming up to the year anniversary and want to do something for it not sure what. Its so hard i was really close to him and don't want to let him go. Everyone tells me to move on but its hard to. I feel doing that I will forget him. I am 25 and its really hard when there is no-one else to talk to. 

Hi Claire, I lost my sister to lung cancer in July(10 days before her 57th birthday)

I live in Spain and my family live in the Uk.I had planned to fly over for her birthday as we all knew she was terminally ill but didn't expect her to go so soon.It was worst case scenario that I wouldn't get back in time, but I didn't make it .I flew back on the Friday and we had a birthday party for her at her home on the Saturday.

All her children and grandchildren came as well as all my brothers and sisters and mum.We all had birthday cards for her that were opened and put on display and lots of people brought flowers/bouquets and we all raised a glass and wished her happy birthday.She was buried 3 days later.

Don't ever feel that it is wrong to grieve for your dad even 10 years from now because there will always times when you think about him.Buy him cards on Fathers day and Birthdays if you  want to.If you had favourite places that you liked to visit or things that you liked to do then still do them, I'm sure your dad would want you to be happy and you can remember him with joy in your heart and not just pain, maybe not yet but you will feel better in time.

Hugs to you x

Hi Sue. 

That is such a sad story. It made me cry. I am so sorry you didn't get to see your sister before she passed away. My dad died on the morning and we were about to go and visit him. It was horrible, but at least he passed away in his sleep and he is not suffering anymore. 

That was a lovely thing to do for her birthday! 

I know i keep putting updates about him on fb about him and i think its lovely. Its coming up to a year, but everyone says that I should just forget about him and not mention him again. I don't think that is right! I want to do something for the year to remember him. I love him so much and just forgetting him means he hasn't existed. 

Lots of love.