So this is the first time I’ve had to admit I am not super human. I hate the fact I am even posting on here as I feel ashamed I cannot fix things myself. I am usually the one who helps other people, I’ve been a teacher and now work with older people and all my friends ask me for help.
After a horrendous year in 2019-20, watching my dad, who had stage 4 prostate cancer, lie on the floor in agony for almost a year during covid, from nerve pain non-covid related, and fighting to get him seen, unsuccessfully, his cancer finally spread to his organs and he was admitted to a ward after not being able to breathe. It was probably in his lungs and had spread to his liver. We tried everything we could to keep dad alive, help him, make him comfortable, get him the right drugs, it was a nightmare as we were fighting during covid and he was also deaf and blind in one eye so couldn’t talk to people on the phone, it was horrendous. The last I saw of him was mid July when I called the ambulance as he couldn’t breathe. I will never forget that day watching them take him in the ambulance.
It is a long story, so complex, he was 75, had had a PSA of 1600 and with hormone treatment they got it down to 4, he had been doing so well. He cycled miles, danced, walked, gardened, lived life to the full. He was a dance teacher who was loved by so many, but very humble. But when he developed nerve pain linked to his pudendal region, it almost killed him. They couldn’t treat it, he tried every drug and was sucking oramorph like it was orange juice but it didn’t help. He was holding on for a nerve block and not expected to die. So, 5 days after the ambulance, the hospice took him and he died there 14 July 2020 of a seizure just hours after being admitted. The day after he died they rang to give him a date for his nerve block. I will never forgive myself for not being able to be there when he died. The hospice wouldn’t let us go and see him, so I had to wait a week until the undertakers were ready.
Suffice to say he left my mum, brother and I. 15 months on, after supporting my mum every day, an hour or more on the phone each day, visits every other day, texts, etc etc I am now exhausted and have had to ask work to reduce my hours a while. They know it is related to my home situation, my mum and brother think it is work related. It has taken this long to finally be in a situation where I can have a day off from supporting or talking to my mum, and don’t get me wrong, I don’t for a minute blame her or regret that, and am not complaining. But my brother is not there for her as much as I am and it falls on me. I also love time with her, we get on really well, but some days I just need a break from it. She knows that but it isn’t so easy is it? She is also very active and sociable gets out a lot most days, but that doesn’t fill the gaps without dad, when she is at home on her own at night, lonely etc, if I am not visiting.
It has now got to the point when I’m finally finding I’m grieving more and have developed a clenching habit, which I am not aware of doing, which has caused me immense agony for the last 18 months, with a sprained jaw and TMJ issues, struggling to chew, can’t bite, wake up in pain, headaches, all linked to strained jaw muscles. I’ve seen a specialist privately as the wait list was 88 weeks, only to be told it is stress and I need CBT or medication. I thought I was doing really well until then. ??
Now I feel like a complete failure. After a phone discussion with my doctor again today, who didn’t really have time for me, where I said I don’t want medication, it won’t bring my dad back or fix my mum, he said try counselling. I have now been advised to refer myself. I am frustrated as I refer people to counsellors in my job and it seems so ironic somehow. I don’t really know what else I expected. I guess I was hoping for arthritis in my jaw, at least it would be a proper reason for all the trouble I’m having. I have a mouth guard from a previous jaw problem, years ago, for lockjaw and it doesn’t fit properly and the specialist just fobbed me off, saying teeth move as you get older! But not out of bite, surely! I have a dental appt tomorrow where I’m hoping I can get a new guard made… but It is so upsetting for me as I just hate that I’m even in this situation and it is bad enough having to explain to a doctor.
I can’t believe my lovely dad is gone or that my mum is having to live without him. So, thankyou for listening and if anyone has any suggestions or advice, or is in a similar situation, I would be ever grateful as this has been one of the hardest posts I’ve had to write. I also apologise for this being about me me me, as I normally put others first.