Some help at last....

[Spiralsparkle]

Hi all

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.

[kenh1]

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.

Hope and pray it goes as well for you. Ken.

[Spiralsparkle in reply to kenh1]

Hi

Thank you, I'm hoping it will improve things for her and she starts to eat and drink more again.

It seems have to scream before anyone takes notice these days.

Hugs to you and your wife.

[cameoboy11]

Really sorry to hear of your troubles. This site is brilliant re support etc jo x

[Spiralsparkle in reply to cameoboy11]

Thanks for the reply.

I can't imagine not having this forum.

[Satt2015]

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

[Spiralsparkle in reply to Satt2015]

I had counselling last year, I asked to be put on the waiting list again the other month but not heard anything back.

She has had a good day today so we may have free fallen for a few weeks and now going to level off again.

I don't know when she will be going in yet as they don't have many beds in the ward.

How is your Dad?

[Satt2015 in reply to Spiralsparkle]

Chase them up on the counselling honey as it does help, it certainly helped me get through.....

I do hope your mum doesn’t have to wait too long for a bed, good days are rare, make the most of it

Saw dad today, very confused, apart from that is enjoying the football and sleeping a lot and so it goes on and on and on and on

Hugs x

[Spiralsparkle in reply to Satt2015]

Has he been pretty stable lately?

It is amazing how the body does keep going and going at times.

X

[Satt2015 in reply to Spiralsparkle]

Stable ish, I literally cannot believe that’s my dad though, the confusion is sooo strange x

[Spiralsparkle in reply to Satt2015]

It sure is. Hugs x

[Marie_14]

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.

Hugs to you.

Marie x x

[Spiralsparkle in reply to Marie_14]

Hi

.

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

[raincitygirl in reply to Spiralsparkle]

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.

Anne G.

[Spiralsparkle in reply to raincitygirl]

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.

[raincitygirl]

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!

XXX

Anne G.

[Spiralsparkle in reply to raincitygirl]

Thank you x

[Zeberdee]

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

[Kevin_1]

It sounds so miserable

Watching her suffer and struggling to get her what she needs.

It sounds like you have managed it. Hospices are great at sorting out medication and making people comfortable.

You have done wonders for her. I hope you can take some solace in that.

Yes, the slipping away is painful to the heart.

Here for you.

Warmly

Kevin

[Spiralsparkle in reply to Kevin_1]

Thanks Kevin.

I see you have had a tough week also. Really hope you manage to have your little party tomorrow with Liz.

Hugs xxx

[Megabrew88]

Glad to hear you finally got some help!

I hope you’ll take the time whilst your Mum is in hospice to recharge your batteries.

Hugs

Mx

[Spiralsparkle in reply to Megabrew88]

I will try to!

Thank you x

[Khartt]

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

[Spiralsparkle in reply to Khartt]

Thank you for the hugs.

Hugs back from UK

[Mamapiggle]

Thinking of you and your mum I hope you gets the help she deserves. Take care of yourself xx

[Spiralsparkle]

Thank you very much.x

[LuisRodicioRodicio]

A big hug.

Luis

[Spiralsparkle in reply to LuisRodicioRodicio]

Hugs baxj1

[wear1947]

Try to meet with people you love. Do not stay depressed at home. Try to excersize, this provoque endorfines and good mood. A big hug

Elena

[Spiralsparkle in reply to wear1947]

Thank you. Hugs back.

I do a little walk each day with the dog, it keeps me sane.

[dollydott]

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

I will be thinking of you x

[Spiralsparkle in reply to dollydott]

Thank you.

X

[Hidden]

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

[Spiralsparkle in reply to Hidden]

Sorry to hear this.

Hugs and strength back to you.

X