Death

[jprall]

My brother passed peacefully in his sleep. For those of you who have it or family members I hope this happens for you and who has it.

[jennifer-nind]

Sorry to hear of your loss. I am pleased the end was peaceful. Thinking of you and your family at this sad time. Love and hugs. Jenni

[hmfsli]

Sorry to hear about the loss of your brother. Praying you will be comforted by memories of happier times.

h

[teena2]

We managed to have my husband at home to die. He was in respite care at the time but the hospice staff worked with me to get him home and they put in nurse care 3 times a day and a night sitter, with district nurses to turn him. I had promised him he would be at home and not in pain and I achieved those two things for him.He had a very peaceful end for which I was very grateful.

with love

Teena2

[LizzieF in reply to teena2]

Hi Teena, sorry to hear about your husband, thankfully he is now at peace. My mum is in the final stages of the condition and I wonder how the end will come about - whether it will be sudden or if I will have time to prepare. I hope you don't mind me asking you but how long was it from when he left the hospice until he died? Mum goes to respite every 6 weeks for a fortnight and I go back home to Hereford from Birmingham (66 miles) and I was worried that if anything happened I wouldn't be able to get back in time to be with her. I know everyone is different but it might give me some idea. I hope my mum has a peaceful time as at the moment she is waking me up each night screaming, it's dreadful. I hate to think of her in pain or distress as she can no longer speak or communicate in any way. I would be grateful if you could help.

My condolences and best wishes to you

Liz

[teena2 in reply to LizzieF]

Liz, My thoughts are with you. I know how frustrating it is for everyone when communication is such a difficulty.

Have you talked to the Occupational Therapist at the hospice. If your mum is still able to see and touch the buttons they might be able to supply a touch board style of communication.

I do think the most important thing here is to talk to the staff at the hospice and make sure you speak to the doctor in charge of her care. I found the hospice staff very understanding and caring. Share your concerns and worries with them and they might be able to help you and reassure you over how you can manage the end stages of life between you and them.

Certainly they could not have been more helpful to me.

If your mum has had a lot of chest infections it MAY BE the time to watch and be on the alert when the next one comes around. This is what happened with Chris - he just had no strength left to fight anything. It seems to be the warning of the end stages for many people.

I had asked Chris to go into respite two weeks early because I was exhausted. On the morning he went he was developing a chest infection and when he arrived at the hospice the doctor called me in to talk about the way forward. The staff phoned me again 4 days later to say they could not get the chest infection under control and as I had already told them that i wanted him home because i had promised him he would be at home, . they moved heaven and earth to make sure that he was home. He died just over 24 hours later. They gave him some intravenous drugs to help his restlessness, stop any pain and make sure that he was calm. this helped a great deal. He was aware of us up until the last few hours before he died. Chris and I had been communicating by me asking a question which required just a yes or no answer and he would squeeze my hand once for yes and twice for no. As I say he was able to respond in this way up until about 4 hours before he died.

I do hope that this is helpful, but do leave another message if you need to know more of our situation.

you will be constantly in my thoughts

love

Teena 2

[LizzieF in reply to teena2]

Hi Teena, thanks for your prompt reply.

Thanks for your help and suggestions. The communication touch board sounds a great idea as communication is next to nothing. Unfortunately I cannot tell what she can see. When she could speak she said that she had double vision. She has Prism glasses but don't know if these help as she can't tell me. It's a vicious circle. My 9 year old nephew who is autistic uses little cards (PECS) to help him communicate and my sister thought we could maybe use something similar for mum. She used to put her thumb up to answer questions. We have tried the hand squeezing but she just squeezes my hand constantly so you cannot tell if she is saying yes or no.

Mum doesn't go to a hospice for respite, she goes to a hospital with a respite care ward. They don't know anything about PSP although they do have a Parkinson's Disease Nurse Specialist. How much input she has I do not know.

I am in contact with a charity (Bridges Cancer Support) that is based at the local hospice and coincidentally they rang me today asking me for an update on mum. I returned their call asking them to ring back but as yet they haven't, so it might be worth mentioning these things to them. Sadly last year they had to withdraw funding for a weekly sitting-in service I used to get from them so they could direct it towards those who were terminal! Mum is terminal but obviously with PSP, unlike terminal cancer, the end is in-determinable. If I explain the situation they may re-consider about that.

You probably understand this - sometimes I haven't got the physical/emotional/mental energy to keep chasing people about stuff and things tend to get on top of me and overtake me, so unless I write things down I forget!

Thank you so much again for all your advice, I really appreciate it. It's great to have this forum so that we can talk to other people in the same situation it makes me feel less alone.

Take care

Love Liz xx

[jillannf6 in reply to LizzieF]

hi liz

i am sorry you r so exhausted - i have PSP a nd so far have done everything mself

but it is so tirign having to re refer to the services which i knpw r nder stress

and stress si no good fo ranyone

take care

and stay on thsi great site

lol Jill

[jprall in reply to teena2]

Dear Teena,

That is the most horrible,honest, and loving description . Thank you.

That is the same way my brother went. Sadly, we only had 2 and a half weeks. Or maybe that is a blessing.

My heart goes with you.

J

[LesleyB]

I am so sorry to hear of your loss. I am glad it was a peaceful end for your brother. My thoughts are with you and your family at this time.

Lesley

[Peter2]

I am so sorry to hear of your sad loss. But what comfort that your brother had a peaceful death from this awful condition. Hopefully in the weeks and months to come you will be able to think of the happier times you had with him.

My love to you and your family at this time.

Peter3.

[jillannf6]

hi j

so sorrry 2 hear of your loss

plz stay o =n hte site

we need you

lol JIll

[jprall]

Thank you all for your kind words. How strange is it that I find comfort from people I have never seen nor know on a personal basis.

There is the not brave part of me that wants to throw things, scream at the world, say what the !@@##$$. This should not happen, but I can't say those things to people. Reminds me of scene from Steel Magnolia's when Sally Fields looses it over the death of her daughter.

I will stay on site, jillannf6. Just for you and the kind strangers that sent me messages.

Jessie

[jillannf6 in reply to jprall]

jhi jessie

thank you

why did i think your were male when u r femiale

?

LOL jiLL

[jprall]

youtu.be/lGZu8gwfpQc(Not working as expected?)

[jprall in reply to jprall]

did i say something that made people think i was a man?

No, I am a female, from head to toe.

I have worked and lived in a man's world but very female. Maybe, I gave the wrong impression.

I am a girl.

J.

[jillannf6]

Hi jessie

I know now u r a girl

Like Somelike it hot when he says I'm a girl .im a girl

Lol Jill

Ps hope itnis not being insensitive thinking of that great film