Autistic Husband with terminal cancer

[Completelydonechick]

My husband has small cell lung cancer and this has now travelled to his brain. He has received radiotherapy and they are continuing with chemotherapy, but his life is very limited. He has never been diagnosed with autism l, but I work with kids with autism, and he is clearly very much on the spectrum and we have discussed this. I have always loved and hated his autism equally! It has made him a unique and quirky person, but also difficult and awkward to live with. Since diagnosis, but mainly through hospitalisation and he has had bleeds on the brain, he has been really aggressive, hurtful and absolutely selfish with his demands. I of course realise that there is brain damage, but, also think that his autism and sensory issues have become magnified due to his condition. I do come away from caring for him feeling hurt, insignificant and wondering what our 26 year relationship has been about. Does anyone else have this experience? Looking for some understanding about if this is my relationship? If is a response to a terminal illness? Or if this is because of autism and a terminal and painful illness l? Can anyone share and make sense of my experience please?

Can you speak to his doctor and see if they can prescribe something for his mood?

There may be a number of factors at play, fear, pain, sensory, brain damage, but his doctor will know more and maybe an antidepressant
may help?

Thank you for your reply. He has just been moved to a hospice, but it is difficult to discuss as focus is rightly on the patient. I am also not necessarily comfortable discussing his autism, as he has never been officially diagnosed, but I do think that it is having a major impact on his sensory issues and emotional responses. Feel that staff would have more sensitivity about his requirements, and understand that he is not just being awkward.

Sorry you’re going through this. It’s very difficult and painful.

My mum died of a brain tumour. Even without an ND element, the tumour seemed to affect her behaviour and she went through a phase of very angry outbursts. They were at the same time each day for a while which also suggested that it coincided with what her medication was doing. That said, as she got closer to death this stopped and for the last month or so she mainly just slept.

Looking back, my sister and I also realised that it had begun to affect what she said and did some time before the diagnosis. She became very blunt about certain things. It’s very painful to be on the receiving end but it’s not personal. It is the effect of the tumour and possibly the treatment. And perhaps emotions about the situation. He may be feeling scared and angry and perhaps he has some envy because he sees other people who are fit and well.

Hospices can be amazing but in fact my stepdad moved my mum out of the hospice she was in and into a nursing home because he felt the hospice carers weren’t able to give Mum what she needed (by that time, she was basically sleeping the whole time).

All that said, given the situation I don’t see any need to withhold information that may be pertinent. Many people will understand that a middle-aged person may well have undiagnosed autism because it was much less known about decades ago. In these end of life circumstances, what harm could sharing your thoughts on this do? And it could help. In your shoes, I would be telling the hospice staff.

I think it’s highly likely that his current behaviour is totally due to his terminal diagnosis. The fact that you’re thinking it has something to do with showing signs of autism is a red herring. It’s his decision whether to speak to the staff about it or not.
This is such a hard time for you - please make sure you talk to staff about how it’s impacting on you too, there will be support at the hospice for the whole family, not just the patients.

My sister died of a brain tumour. Her whole personality changed, although in this case for the better.

She had been rather spiky and over the years had been quite unkind to our other sister. She became very sweet and caring and even reconciled with our sister. It was strange but it's nice to have those latter memories.

I realise this will be no comfort to you OP except to say his personality change could well be down to the cancer. I'm so sorry for what you're going through and wish you strength ❤

Sorry this is happening. Tell the staff it will help them do their job which is to make him comfortable

This popped up at the end of a thread I was reading, and I read your post as my brother has recently been diagnosed with autism and is being investigated for possible cancer ( I’m probably jumping the gun but can’t help wondering how he’d cope , and how I’d be able to help). Apologies if your DH has in fact passed away. I found this https://www.autism.org.uk/advice-and-guidance/professional-practice/palliative-care . It might be helpful. There must be palliative care professionals with a specialist interest in neurodivergence. Best wishes to you.

Hi OP,

I can relate 100% to what you are saying. My DH was the most laid back, funny person when we met and up until around 1 year post diagnosis. Since then, he’s been really challenging to live with. Every day is a struggle. I am thinking of you.

Maggie's or Macmillan can offer support for you as well for the impact his cancer is having on you.

My df was, in all probability, an undiagnosed autistic, and raising that with healthcare personnel made a considerable difference in the way they approached and responded to him. It got extremely difficult towards the end.

Hospital care can be absolutely brutal for autistic people. If you think about a child’s sensitivity to clothes labels and sock seams, imagine how distressing a fluid line must be? Or the sensory overwhelm of the strong smells of disinfectant, machine beeps, whirring bed pumps etc.

And then with that horrible disease consuming the very best of them, day by day, it is a nightmare. If you can, op, reach out for as much support as is available. If you can, try not to take things personally, but fill your own cup before and after each visit. It feels so trite to write this but I’m relating to so much of your situation.

Please don't re-evaluate your relationship based on this. Brain tumors and bleeds, especially if they involve the frontal lobe, can really make people selfish and aggressive. It's horrible, but it doesn't mean that's who he really was or anything like that.

Is he on a medicine called dexamethasone at the moment? It's used when cancers spread to the brain to reduce the swelling. It's a steroid and a very well known side effect of steroids is that they make people aggressive.

My dad was in the same boat last October and had the dexamethasone. His personality completely changed so made the last month of his life very painful for my mum and me to watch.

All I can say is you have to have faith that it is the disease/medicines talking, and not him. Don't let how his behaviour is now dictate your memories of him going forward. It's hard so I offer a hand hold 💐