Another stage

[jac001]

Palliative care consultant has been to see mum today and thinks that we have just weeks left. In my heart I knew it really but the wind has been knocked out of me completely.

[Hummingbird_]

Hello JA,

I can only empathize with you - you know in your heart of hearts that this stage has to come but when it does you still can't believe it.

I'm sure like many of us you have fought long and hard and done everything possible for your Mum but now sadly is the time to step back and let nature take it's course.

It won't be easy, the journey may already have been tough, but as time goes by you will feel more at ease with it.

There are no words of wisdom I can offer you, nor can I do anything to take away your pain (or your Mum's) - but I send you a hug and my prayers and hope you can find some comfort knowing there are other people who have been in a similar situation and have an understanding of what it's like and we are all thinking of you.

Stay strong and take care of yourself too, I hope the journey peaceful.

Best wishes to you both,

Tree Hugger x

[hmfsli]

Dear Jac,

As Tree-Hugger says, even though you knew this time would come it is still a blow. I pray that you and your family will be able to do and say all that needs to be done and said in the time that your Mum has left, and that her passing will be an easy one.

God bless

H

[jac001]

Thank you for your kind comments the prayers are very much appreciated.

[SheilaN]

Dear jac001,

The inevitability of this awful condition robs us of the power to help those we so dearly love. As their carers at home we do everything we can to ease their lives and make them feel as normal and comfortable as possible. The plateaus push us a little bit into denial I think (they did for me anyway) but the dips bring us back to reality. Knowing by now (in a care home or hospital) that there is nothing more we can do but love makes us feel desparate, screaming inside and raging at this cruel disease. It is little comfort to know we are not alone, but it is some comfort. Please know that we are thinkig of you and your family. May your mum's time with you be peaceful and painless.

Take care

SheilaN

[toty]

dear jac001

My dad died on 1st oct the doc came round the week before ,he told us dad had between 4 hours and 4 days to live.Although we knew this day would come ,nothing really prepares you for it.Dad fought for 5 days,the last half hour of his life was really peacefull he died 4.32 on the 1st oct ,sun shinning thru the bedrooom window.Make the most of the time you have with your mum,have hospice nurses to help,even just talking helps.My dad had this alful disease for approx 15 years.Love your mum and be good to yourself.Thinking of you at this difficult time.Love Toty

[jimandsharynp]

JA, now is the time to step up the love you pass on to your mother. Speak your love, touch her with love, do all you can to express your love in a special way.

How long was her struggle with PSP?

jimandsharynp

[Hidden]

Many hugs, it is our destiny too and we are thinking of you xx

[jac001]

Thanks everyone. Mums pain is terrible the morphine keeps being upped every few days but we just aren't hitting the pain. It is very hard to watch her suffering. But she is at home and we are all here with her and hopefully that will bring her some comfort.

[lorrainne]

Jac, we all feel your pain with you, my mum suffered this illness for 17 years, she sadly passed away on 29th September 2011, although the journey is long and hard for both you, family members and your mum, all I can say is try and keep things as 'normal' as you can, I remember washing mum down, washing her hair as difficult as it was at the time ( I knew mum would want to go with nice hair) silly as it seems. The end, no matter how much you think you are prepared will be a shock, yes I was always the strong one!! Take each day now as it comes, play her favourite music, talk to her as you normally would, hearing is the last sense to go I believe...I feel for you, be strong, the hardest part is letting her go and after. I'm thinking of you all and sending lots of hugs and love your way xx

Lorrainne xxx

[jac001 in reply to lorrainne]

Thank you appreciate it

[dllera]

Hi Jac - your mother should not be in so much pain. Have you considered using clonazepam to help with the muscle spasms?

[jac001 in reply to dllera]

They put Midazolam and Morphine in the syringe driver. Still having pain. Will speak to GP re Clonazepam anything is worth a try at the moment.

[jac001]

Mum just seems to be getting weaker every day. Still manages a few words here and there but her speech is getting really hard to understand.

[jac001]

Mum is getting weaker and weaker every day. PSP is really wiping her out. They have upped the Morphine and Midazolam. They think this will make her sleepier. Hopefully she will just sleep away. They have told me I need to bring my anxiety levels down as she is picking up on it. Really hard to do that when you are losing someone you love.

[Hidden]

jac, don't let anyone make you feel bad for the way you feel. Hopefully, they are trying to help you in your struggle to let go of her. Of course you are having a hard time. It's only natural. I am wishing for an easy passing for her and for peace and acceptance for you. Please take care.

[jac001]

Mum thankfully has been very peacefully asleep over the last two days. She is no longer responding to my voice. She is pain free and very content. Just a matter of time but we are all sitting with her and supporting her on the last stage of her journey.

[Richteab]

I am sure that everyone's thoughts and best wishes are with you. I was in exactly the same situation as you only two weeks ago so I know how it feels.

[Cagsy]

Lost my mum January this year from CBD, sat with her for a week, till she slowly passed in her sleep, I miss and think of her everyday. But am so glad I had time to tell her I loved her, held her hand and she went peacefully in her sleep ,eventually, thinking of you. XX

[BarbR]

To everyone who is with a loved one in the final stages of PSP. My plea to you is that you communicate as much as you can with your loved one. Leave nothing unsaid. Although all of the signs were that my husband did not have much time left. I did not take advantage of the last days of his life to talk with him about ....everything.