Confusion, paranoia experiences

Hi, I really feel for you it must be so exhausting.

My husband has pca, stage 4 and spread to bones, diagnosed 4 years ago too. His psa is rising and not sure what they can do next as unable to have chemo or radiotherapy. He has been on Prostap and a short course of Bicalutamide which didn't work and has therefore been withdrawn.

Whilst on hormone therapy, you will have experienced mood swings and fatigue but what you are experiencing sounds more to me like dementia. My husband had a stroke last summer and has since been diagnosed with vascular dementia. We have long periods where he is pretty lucid through the day, but by evening we often get the 'sundowning' where he thinks we have moved, are moving, are in Spain or France and need to go home. 

I think you should consult your gp and see if you can get a diagnosis of some sort of dementia, which at least, will give you an idea of what is going on. On a practical note, you should be getting the higher Attendance Allowance and will also, once diagnosed, get a reduced Council Tax rate to help to pay for some care which you clearly need.

Best regards

Gina

Hello CJ14 

I am so sorry to read your post - it can't be easy dealing with this situation. May I suggest you contact his GP, let them know of his present condition and ask for some help in dealing with him.

You can also telephone our Support line on 0808 808 00 00 (8am to 8pm 7 days a week) - I am sure they will be able to put you in touch with additional support.

Best wishes - Brian.

Hi CJ14 , it might be worth checking in with your GP to make sure he doesn’t have a UTI . This can cause the symptoms you have described .

huge hugs to you both 

Liz & OH  xxx

Thank you, urine sample taken today xx

Thank you, everyone involved, it is certainly a huge learning curve, x

Good thinking Liz. That would normally be my first thought too.

Hello CJ14

im so sorry to hear about your struggles. This is a tough journney we are all on for umpteen reasons. 

Alongside the potential for a urinary track infection causing your husband’s disorientation, I am also wondering whether his blood chemistry has become deranged. I wonder whether your GP would consider checking this out?

my other thought is that you must be absolutely worn out! Are you getting the practical and financial support you need? I hope so! If you are in England, then I think your Local Authority has a legal duty to carry out both a financial and a care assessment. Might it be worth contacting your local social services?

I also wonder whether your husband is having reactions to medications? For example, morphine for pain can cause hallucinations, drowsiness and confusion. ( we live in the Midlands, my friend was dying of pancreatic cancer and remarked upon my son sailing by and waving from a ship  at the bottom of the garden)

Finally, if your husband is approaching the end of life, there are specific end of life care pathways that should be made available to you and , I think, there is no financial cost to yourselves but I am less sure about this.

I do hope this is a temporary glitch and that your medical team can help.

I was just wondering if there had been a UTI result and if there has been any change in his condition?

Regards

Gina

Hello, no infection but confusion still evident,  pain increasing and sleeping a lot. We have a referral in for a hospice stay but no beds available yet. Thank you x