I just want it to end now

[sparkle63]

So I wrote a few weeks ago saying the end was close for mum as we were in palliative care stage.

Over the weekend mums been put on the syringe driver and it’s just awful , she’s so agitated despite stat doses in between and I just want this to end now. It’s awful see her like this. And I’m so tired from it all.

I’m so disappointed in the lack of help we have had too. Mums carers are two or her friends , that’s it, we have had no other help.

I’m just disappointed in the system and in this I hate seeing mum suffer and I hate psp.

Sorry for my rants.

[PSPpartner]

I’m so sorry. I hate this cruel disease too. We all do. Don’t apologize! This is the place we can all vent and share our frustrations, and sometimes even little victories! No judgement here. We are all doing the best we can! Prayers and hugs for you both💞

[AnneandChris]

Oh dear, I'm so sorry to read this. Have the nurses given you an emergency call number? If so please ring them whenever your Mum becomes aggitated and they will come out to adjust the driver. There is absolutely no need for your Mum to be distressed.

We had one episode where my husband was distraut, but I phoned and a nurse arrived very quickly to settle him down. He had a very peaceful end in his own home.

Have your nurses or GP applied for CHC for your Mum as she is in the final stages? This is to provide care, I am assuming you are in the UK.

Sending hugs at this difficult time.

Anne

[sparkle63 in reply to AnneandChris]

They can’t adjust the driver , as she’s no on the maximum prescription that has been written for it and it’s obviously been the weekend ... so no doctor to review. That’s why the stat dose injections have been given in between as I’ve been calling the nurses .

[Goroos]

Sparkle it sounds like you live in Australia. We live in northern Victoria and we found help very limited. In fact we felt we were educating the health professionals. So little is known in Australia. Poor mum!!! We felt like we had to fight for mum every day. It took its toll on us all.

I learnt more from this site than any where else. We were so thankful when my sister found this forum.

We hate PSP too.!!!! Take care.

[sparkle63 in reply to Goroos]

No I live in uk and it’s just rubbish support. Basically because mum has £ ... no help given! makes me so cross

[AnneandChris in reply to sparkle63]

Hello there

CHC funding is not dependent on how much there is in the bank. It is a NHS medical funding, it might be worth you asking your nurses plus GP. Out seniour nurse applied for it and it sounds as though you could get emergency funding given the current circumstances. Please message me if I can be of any help.

Keep on keeping on

Anne x

[Aprilfool20 in reply to AnneandChris]

Chc funding is hard to get.a lady in our support group has ongoing problems trying to get for her husband.-nearly a year with no luck. If you are going through this you need to have someone to fight your corner(or have millions in the bank)! I dread the day my husband has to try to get it for me.

[sparkle63 in reply to AnneandChris]

My mum had her PIPs stopped because apparently PSP didn’t cut the mustard and she had to appeal. So I can’t see us getting there. As a family we are exhausted. Yes the district nurses come for the driver and for the top up injections in between but no one stays to help. There is no help that way. And that is what I find so shocking.

[AnneandChris in reply to sparkle63]

PIP payments are not the same as CHC Funding. Please, please ask about it. You sound as though you desperately need help and being a carer you need to look after yourself as much as your Mother.

Talk to the nurses, and the GP. If you can contact PSPA who have information on their web site for both carers and medical professionals that might help them and you. They have a help line and I'm sure they will do all they can for you.

Thinking of you, please don't struggle, please get some help. Where are you in the UK? I know there can be some regional variations.

Take care

Anne

[MRSYafffle in reply to sparkle63]

Ask for your mums care package to be looked into as a matter of urgency. Tell them you can't cope and need help. Tell them you want to be referred for CHC funding. There is a checklist look it up and don't be fobbed off. I'm in the middle of this. Keep on at them, there are lots of us in the same boat. I'm so sorry for you I know it's so hard. Xx

[LuisRodicioRodicio]

A big hug and courage.Luis

[Heady]

Hi, having just gone through this with my own mother (not PSP) I know exactly how you feel. I agree with Anne, somebody should be regularly checking the doses and upping them if necessary. If the driver is in, it shouldn’t be to long, but I agree, these are the longest days going.

Sending you huge hug, strength and much love

Lots of love

Anne

[highopes]

Hi, I am so appalled, shocked and angry to hear what you are going through. Is it not traumatic enough to witness this, never mind the emotional side? It is so frustrating, my Mother is not at that stage yet but where is the help and support? I have found everything is a battle since diagnosis. Whilst this forum and the people providing information and support are amazing, where is the NHS? I ask this because my Mother was diagnosed a year before the Pandemic! Sorry to sound bitter but that's how I feel!

[AnneandChris in reply to highopes]

Hello thereI'm saddened to read your lack of support which is there. Please talk to your GP about support and equipment from OT, Speech therapist and the district nurses which will be needed as the condition progresses. There is funding via the NHS for patients which can be applied for by the GP/Nurses.

If you look up Kevin-1 he is a fount of information on CHC funding, but like so many of us here, his journey has ended.

Keep going

Anne x

[sparkle63 in reply to highopes]

I hear you. I am a health care worker myself and the way mum has been treated is shocking she was diagnosed 2018 so pre covid and services were appalling then. Hardly any SALT or physio input it’s just been truly awful.

[MRSYafffle in reply to highopes]

I cannot believe the lack of services and social care. The NHS is as critical as our loved ones and I'm so frustrated by it. Unbelievably I have been campaigning for years to save our NHS and I stand by this but its so underfunded and social care is non existent. When complaining last week I had to point out that I was an actual campaigner for our NHS in my spare time ( as if I have any now) and have been for years.

We finally saw our specialist nurse this week who said mum should have been referred to her 3 years at least. I had to fight for this first appointment. It's all so very wrong.

I feel mum is a hot potato that nobody knows how to deal with, looks like further arguments ahead with O/T and CHC assessors.

[Stephanielayell82]

You are so correct there is no help from any medical field with this and yes we do educate them. I told my loved one I would have more education in the medical field then doctor's by the time this is over. We live in the US and it horrible here too. I don't know if you guys have music therpy there but it is very soothing for my loved one here. And they have the power to up the medicine with simply writing a new order for it. People have no clue how brutal this disease is unless they are hands on. Pray you all can find peace very soon. Stay strong and hang in there

[Aprilfool20]

By the time you read this, she may be out of her pain.if ever there was a case for assisted dying, anyone with this god awful disease should be given the choice. I’d take the option tomorrow rather than have my husband watch me go through what’s coming. I know some people disagree with me but it’s a subject I feel very strongly about.you wouldn’t treat an animal like it x

[sparkle63 in reply to Aprilfool20]

I totally agree but said my she’s not

[sparkle63 in reply to Aprilfool20]

She’s still here ... a week on the driver!

[Aprilfool20 in reply to sparkle63]

Happy for you!

[Doublereeder]

Have you spoken to PSPA about help with Attendance Allowance (rather than PIP depending on age?)/appealing PIP which is not dependent on finances. They have a good relationship with DWP and were able to set up an appointment with DWP for them to attend for Mum's application a couple of years ago and it went through smoothly. Don't then forget about potential Carer's Allowance for you. (Sorry to our non-UK members for yet more acronyms!).

[sparkle63 in reply to Doublereeder]

Mum has the PIP now after appealing. But I couldn’t care les anymore , we are coming to the end of our PSP fight x

[MRSYafffle]

Aw so sorry sending loads of love your way. What a horrible journey we all part of. Rant away of it helps. I know I do.The lack of support and care is dreadful, you are really left to muddle through. I hope that your mum can settle down and not be in distress and that you have people there for you, but this platform is here to lend support. You've done great and are doing great.

[sparkle63 in reply to MRSYafffle]

Thank you x

[Musicmadgran]

Don’t ever apologise about being exhausted by PSP. We all understand completely. For what it’s worth, you are doing a heartbreaking job with grace and compassion. You must be exhausted. Try to give yourself a pat on the back. You are an angel and your mum would tell you that if she could. Love and hugs xx

[sparkle63 in reply to Musicmadgran]

Thank you! A week in and she’s still here on the driver ! X

[eaglet]

You will have time to relax soon, i hope.. tight hugs and love to you and your mom.

[Willowden]

You and your mum are in my thoughts.