The last few months have been pretty hard going with Mum.
I've felt no one has listened to me and just passed the buck onto another health professional. This has been a common theme for the last few years sadly.
The hospice finally sort of engaged to support more a month or so ago but again weren't 'all in' or listening to me about the effects medication changes were having.
Tuesday a new community Matron arrived to introduce herself (they keep changing the team areas around) . She listened, I had a meltdown and she used to work for the hospice, bonus. It has taken her since Tuesday to sort something out as no one was ringing her back....Know that one very well.
Mum is today being put on the waiting list to be admitted into the hospice for symptom management and assess if we are at the end of this journey or it is all the med changes side effects. They will stop all her meds and start again. The epilepsy just complicates matters more and she is suffering and with that. I keep telling everyone make her comfortable but her wish is not to be a zombie, which she currently is.
The relief is immense but I'm so sad and can't stop crying as I see her disappear before me. I don't want to prolong her suffering but I don't want her to leave either. It is always the unknown that is so evil as to prognosis.
There maybe more time left, there may not. I'm just so glad someone is actually going to help her more and I know she will be safe.
Thanks for listening.
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Spiralsparkle
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That is good news. My wife has twice been moved from hospital to hospice for medication review which resulted in much improved and appropriate medication.
Bless you Spiralsparkle! It’s been way too long for you and your dear mum, continually crying out for help and getting nowhere. Let’s hope the hospice can help and keep your mum comfortable, if this helps, they might be able to give you counselling if you want it? My heart goes out to you at this desperate time and I’m sending you a huge hug with lots of love x
Spiral glad someone is trying to help you. Fingers crossed here. I hope they can get your Mum's medication right. I also hope you can get counselling and things work out alright.
You feel like we all do. We don't want our loved ones to suffer but we don't want them to go either. Sadly we have to let them go eventually, and hope we have done the right thing. Usually we have! If you put yourself in their place that helps I think.
Oh god yes I'd hate to be trapped in a body and mind that doesn't work and nothing can be done. It seems inhumane to me but that's another debate and one day UK may change some laws.
She has had a much better day today so not looking so awful as beginning of week
Some day the UK will have the legislation...the interesting thing to me here in Canada where we DO have it, is how little it is used so far. 35 million population and not even 2000 cases since July 2016. I've shared info about it with my CBD hubby so I know he understands it, but I've never raised it since. I have to be sure it never seems to be my initiative. So far, he is indicating no interest in it.
That is interesting. I guess everyone is individual on their choices.
I can say now if it were me I'd be wanting to pop off before it all got too bad but I guess unless you are in the shoes you don't know what your decision would be.
We have a case going on currently in UK with a man who is local to us who has MND fighting for assisted dying in the high courts.
Bless you Spiral, for being such a faithful daughter and ardent advocate for your mom. Whatever she is going through, it is so much better than if you weren't there to push for her good care!
Its about time someone is ready to HELP. Unfortuntely our hospice was unable to help as they could not cope with PSP!! Hopefully your mum and you get all the help you deserve. Love Jxx
That must be so frustrating , not feeling like anyone is listening! We are not as far progressed here, but I still feel your pain. Hugs from Texas, Karen
Sending you love and hugs on this next journey with your mum and hope you both get the support you so deserve. I understand your feelings of relief and sadness. It's heart breaking seeing what these conditions do
We are in the same situation it is utterly soul destroying and completely heartbreaking...I am sending you huge hugs and kisses to keep going my lovely xx
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Cracking up and need some help!
