End Stage of PSP

[Blueclouds07]

What happens at the end stage of PSP? The doctor said that my mom has entered the end stage of PSP

[LuisRodicioRodicio]

Hi Blueclouds07!

Through the internal chat I am sending you the information related to our experiences and what I have been able to collect.A big hug.

Luis

[Mpsp in reply to LuisRodicioRodicio]

Please could you kindly include us with your experience of end stage PSP?

[Blueclouds07 in reply to LuisRodicioRodicio]

Luis thank you very much it is very hard to see my mother going through this stage but its life

[ncgardener799 in reply to LuisRodicioRodicio]

Luis, Would you be so kind to please send me the stages of PSP information. Thank you for sharing your knowledge and experiences.

[Aslin in reply to LuisRodicioRodicio]

Hi Luis, could you kindly send it to me too please? Thanks

[Trixi01 in reply to LuisRodicioRodicio]

Please could you also share with me your experience of end stage PSP. I’ve been told by a GP he’s in end stage but the PSPA website in the UK is rather vague. Thank you xx

[superquest30 in reply to LuisRodicioRodicio]

Hi Luis, please would you be able to send me the end stage PSP information?

[LuisRodicioRodicio in reply to superquest30]

I am sending you our informations .

A big hug and luck.

Luis

[DoingwhatIcan in reply to LuisRodicioRodicio]

Hi Luis… sorry to add to the long list, but could you also send me your thoughts and knowledge gained? Thanks so much

[LuisRodicioRodicio in reply to DoingwhatIcan]

Hi Doingwhatican!

I am sending you our informations and experiences .

A big hug, luck and courage.

Luis

[Akhann in reply to LuisRodicioRodicio]

Hey Luis - can you please send me this info as well? thank you.

[Stephanielayell82 in reply to LuisRodicioRodicio]

Could you please send me end of life stages from your experiences. Thanks

[Benpops in reply to LuisRodicioRodicio]

Hi there Luis! I'd really appreciate it if you can send me the info too? My mum is at this stage and it's so helpful to see other people's journeys... Thanks!!

[Disco4ever in reply to LuisRodicioRodicio]

Hey Luis,

Could you please send across information ? My dads in the hospital with pneumonia and I’m worried he might be in the last stage.

[CurlyJ in reply to LuisRodicioRodicio]

Hello. please could you also send it to me. Kind regards. Jess

[Heady]

One thing in life that is guaranteed, we all die. After experiencing several deaths close to hand, over the years, I have to say, for all its hateful aspects, my husbands death to PSP was one of the most peaceful I have been through.The only bit of advise I can give, is make sure others are doing the caring. This is time for you to be the child of your Mum. Sit with her, hold her hand, laugh, cry. Do what ever you need to. She will need her child by her, knowing that she is loved, not someone that is tired and stressed by doing any physical stuff.

Sending big hug and much love

Lots of love

Anne

[Blueclouds07 in reply to Heady]

Heady

I will do that thank you so much

[Sandir in reply to Heady]

Agree wholeheartedly

[AJK2001]

The PSPA website has some information about what to expect at each stage, as with all things everyone is unique and you may or maynot see these things. The end stage of PSP as described by the PSPA can last several weeks, in Mum's case I find if difficult to say when she entered it, it was 3-4 weeks maybe, but the actual end came quite quickly as she completely lost the ability to swallow and as she had decided she wanted to stay at home (and there was no point her going to hospital to be rehydrated as it would just extend the inevitable and cause her distress being somewhere strange), she was given pallitive care, looked after by a team of carers who she knew and liked, she became unresponsive and died very peacefully about 40 hours later. Talk to your Mum's GP about how you want the end managed & get end of life drugs prescribed. I found it terribly hard when the Community Matron said she wanted to prescribe the drugs but she explained she was doing it ahead of time, so/if when Mum needed them they were there and I didn't have to chase round for them at a time when I should be with Mum, which was very true. xxx

[Blueclouds07 in reply to AJK2001]

Thank you very much

[Gingerw3]

At the end, my husband became weaker and weaker and even the physical therapy wasn't helping with transfers etc. He also began to lose significant amounts of weight and eating less and less of the puree food. The doctor explained that even the intestines are controlled by the brain and that he wasn't able to process anymore. He ate a little even up to the last few days. From the time when we saw a big change in his strength and the weight loss started and when he passed was about 6 months.

[Blueclouds07 in reply to Gingerw3]

My heart is with you ❤️❤️