The Long Goodbye

[Tokki]

This is the title of one of my favourite novels. It also seems to be the way PSP works.

A little more than 15 months after the final diagnosis, Bugs died at 6.30am yesterday. She had been in hospital since mid October. Firstly admitted because of urinary retention, then developed UTI. A CHC assessment was completed and eventually rejected. Meanwhile the care package was being sourced and when finally in place, another UTI prevented her discharge and the package went elsewhere. In the meantime Bugs condition worsened - hallucinations and aggression towards staff, rapidly reducing ability to eat, speak, mobilise - just about everything.

I was able to persuade the ward Sister to look at the CHC again as I felt circumstances had changed. Guess what, every category bar 1 was upgraded (2xA, 1xC and rest B's) That same afternoon the Neurologist visited Bugs and advised that she thought things had moved so fast the a palliative care regime was now appropriate. Tear up CHC and submit Fast Track application.

So many false hopes- typical PSP

I was in shock. Bugs swallowing had become almost non existent and so PEG was the only real option. Bugs had always refused this in the past but this last meeting with the Consultant might have indicated yes. However, Bug was so confused with the dementia like symptoms that they felt she lacked capacity. I had 4 meetings to try and fully understand this but finally had to accept the clinicians view that the benefits - v - the risks were such that it was not worth proceeding. It would have given some longevity but so many things had gone , not just downhill but off the cliff edge, that improved quality would not happen.

Meanwhile CHC arrived along with hospital bed etc. Cats loved the air mattress - jumped on and started kneading/ treading. Little claws - they didn't give me a puncture repair kit. Told Bugs this and got a brief smile, nothing more. By the time everything was ready, Bugs was too ill to come home.

Last Friday, Bugs seemed more distressed than usual and I was worried about dehydration again but the Doctor said she was not and a final discussion about IV fluids took place. The Doctor (he looked so young that I thought he might not have started shaving but has was actually the most thoughtful and careful with explanations and time) said , just like the PEG discussion, that it would not benefit Bugs. To help her, they introduced medication via a syringe driver and from last Sunday, Bugs never awoke. I stayed at the hospital from Tuesday so know she was ok and well cared for.

I am still trying to understand my feelings. At the moment, I am inclined towards giving thanks for this final phase being relatively very short. I expected some of the symptoms to worsen gradually but everything just crashed. When I left yesterday, arrangement were being made for brain donation. I hope this final act will help others in the future.

Why the title, it occurred that this is PSP. It just chips away at the person. Little bits are lost day by day. Someone asked me yesterday if I was ok coming back to an empty house - well I have been since mid October when Bugs went into hospital. More than that though, the person in the armchair all this year was not the Bugs I married nearly 40 years ago - little by little things changed certainly over the last 6 years and probably more. I have been saying goodbye for many months/years.

I am writing this from a carer's perspective. I know many of the people with this illness read and contribute and I am truly sorry if anything I have said causes upset. It is just my thoughts.

I have never been in a position to offer the advice and information that many of you contribute - not through lack of knowledge but experience. Now I have a great deal of the latter so maybe I will be able to add something in the future.

I read earlier comments about Christmas greetings. There is a pile of cards in the lounge. People mean well. I just wish all of you "a good as it can be time" over this season and into the new year but above all, times of peace.

Bye.

[Debbieann]

My thoughts are with you, I am sorry for your loss.

Sending you a hug

Debbie xx

[Yvonneandgeorge in reply to Debbieann]

My thoughts are also with you, PSP is the most horrible illness going, people don't understand what we go through do they, she is in a better place, sending you a massive hug, merry Christmas to you and your family xxxxx

[jzygirl]

Tokki my heart goes out to you.. may you find some comfort in the fact that Bugs suffers no more.

And yes as you said it is a long goodbye. Piece by piece they slowly die in front of us and each infection hastens the final journey.

Be brave and grieve in your own way and time.

Thinking of you Jane xx

[carehope]

Dear Tokki,

If only I could offer condolences that would lessen your grief ! I hope that close relatives and friends are able to provide the love and support to help you deal with the pain of this parting. You helped to lessen the suffering that Bugs dealt with by being right there with her through it all. Nearly 40 years together ! Your donation of your loved ones brain in order to further the search for knowledge and treatment of PSP is inspiring and selfless. My sister has spoken of donating her brain when her time comes and I think that I now feel better about the idea. The need is clear and crucial in discovering an effective method of dealing with the beast !

Bugs is no longer suffering. I am glad for that and hope that you will heal and be aided by the many memories you must have from the years you spent together.

Thank you so much for taking the time to make a positive difference in our lives . Thank you Bugs. We who met you through Tokki will remember you always.

Take care and be well,

Elise in NY, USA

[easterncedar]

Thanks for letting us know. I'm very sorry for your loss. Even though it's a long goodbye, it must still be a shock. I hope you can rest now, and take care of yourself. Hugs and love, Easterncedar

[Satt2015]

My sincerest condolences to you, Bugs will now be at peace and it's now your time to grieve. Hugs x

[doglington]

Sorry to hear that Bugs has died. It sounds a very traumatic time as things crashed.

Hope you have support as you sound shocked.

Hope we will hear more from you,

Love from Jean x

[PSPwife]

Thank you for your beautiful and accurate post. So sorry for your loss.

[Kevin_1]

Tokki

Such a moving post. So full of understanding.

I read it to Liz and she was nodding all the way through.

We are sorry for your loss, though as you say PSP is a long goodbye.

Thanks for your well wishes.

We wish you peace.

I hope you do post here again if you feel to.

Warmly

Kevin and Liz

[am2015]

I can only offer heartfelt words of condolences on the loss of your wife. Your emotional post moved me to tears, the deterioration was so, so rapid. I hope you can find some peace in time that your dear wife is no longer suffering. Xx

[NannaB]

My condolences Tokki. No words can make things better but hope by knowing there are people thinking about you, it will bring you peace.

Sending you a big hug and the confirmation that although our loved ones are never far from our thoughts, there is life after PSP even during the grieving period.

Lots of love.

X

[abirke]

It is a long good bye It started the moment of diagnosis. I am sorry for your loss and I hope that can go ahead and have a good Christmas anyway.

Thank you for the donation maybe something in her brain or my husbands will lead to a glimmer of hope to others who will someday be diagnosed and have to start that long goodbye.

AVB

Know therefore the that the Lord thy God, He is God, the faithful God which keeps his covenant and mercy with them that love Him and keep his commandments to a thousand generations. Deuteronomy 7:9

and maybe your lovely wife's donation will be that which will help a thousand generations!

[SuzeW]

Fabulous words - so true. Wishing you peace, strength & sending love at this time X

[Amilazy]

Tokki I send my condolences but you must realise she is now at rest the fight is over. Now after you have had a period of bereavement you must start to rebuild your life little by little. You will never forget Bugs but try to concentrate on the happy times.

Best wishes at this time. Tim

[vlh4444]

Dear Tokki, I am so sorry for your loss, it must have been such a shock for you that Bugs' deterioration was so rapid.

Your post is so accurate and mirrors my experience with Derek in the last few days of his life (although he did not have a UTI and was not in hospital). I afraid when things begin to shut down there is nothing to be done apart from making the last bit as comfortable and peaceful as possible. He too donated his brain to research. I do hope you were able to say all you wanted to say during those last hours at her bedside - you should have no regrets as you did all you could and were a wonderful carer to the end.

I hope you have family to support you now and in the weeks ahead.

Love

Vicki

[Heady]

Hi Tokkie, sorry to be late in posting. Steve will be following Bugs very soon. We were also trying at the last minute to get a Peg fitted, but by Friday he started to go down hill quickly. Yesterday, we decided enough was enough, he is so peaceful, we are not going to do anything that will disturb him. The DN is coming in to give him medication to keep him calm. The driver is ready to be set up, if needed.

No words can help, or solve anything. I am sure, like the replies I have got to my post, you are getting comfort, from knowing people are thinking of you.

Our loved ones have been on a very long journey, for Bugs it's finally over, free from this evil, evil disease. Steve will be, I pray, very soon.

Sending you lots of love and a big hug.

Lots of love

Heady

[Marie_14]

Tokki, I am so very sorry to hear your news. You must feel wrung out with all you have gone through? You have been so good to Bugs however, that you can rest knowing you did your best.

I am so cross for you both that she was denied CHC funding until it was too late. How many more times does that need to happen? Poor you and poor Bugs. You have both been to hell and back. Now she is at peace and this awful illness can't harm her anymore. Please take care of yourself. Rest and grieve and don't be pushed to be 'normal', until you feel you are ready. You will never forget Bugs. You have a heart full of memories. God Bless you and help you through this, I do hope you will keep in contact with us.

God Bless you again.

Marie x