What are the stages of psp?

[Moojuice219]

End of life stage of PSP. How do you know what stage your loved one is in?

[pune_india]

Hi,

You can refer to this earlier post:

healthunlocked.com/psp/post...

Also, search this forum for words like "stages" or "phases" to find more posts.

[NannaB]

Hi, you can find the stages as Pune- India has said but I stopped thinking about stages when my husband was still with me. Everyone is an individual and reach different stages at different times. Some folk have gone, still able to walk and talk, some have a long time incapable of doing anything. Others have had strokes, heart attacks, aspirational pneumonia or other things that anyone can die from. No one knows when the end will come. If PSP is the only condition, which was the case with my husband, when he decided he no longer wanted to be PEG fed, his body peacefully closed down over 11 days. At 9 days he no longer responded, his skin felt cold and legs were mottled and his heart just stopped 2 days later.

We made the most of every day, not thinking about stages. We went out several times a week in good weather until 3 weeks before he died and he put his thumb up when my brother asked him if he had enjoyed the day at the sea. When first diagnosed I looked up the stages but quickly found that it was better to ignore them and just get on with whatever time we had left together as some of the later ones came earlier. My husband died 6 years after diagnosis.

XxxX

[Tippyleaf in reply to NannaB]

Totally agree

Xxxx

[Heady]

Oh my heart goes out to you. Like NannaB says, there is no definite way to say. Each is different. I can remember asking this exact same question, one of our very lovely friends, put me straight. The only stage that matters is today! Make the most of it, concentrate on what can be done, not what can't. The only thing in life that is guaranteed, is death, for each and every one of us and we never know when that bus will pull up to collect us. Take each day as it comes, don't worry about tomorrow, today will enough challanges to keep you busy!

Sending big hug and much love

Lots of love

Anne

[Moojuice219 in reply to Heady]

Thank you for your kind response.

[Dadshelper]

Try not not to think in terms of stages. Just make the most out of each day as long as you can. Eventually you will find you are reacting to whatever condition has presented itself. As already stated no two people go through this the same way, keeping the person comfortable and safe is a main goal.

Ron

[Moojuice219 in reply to Dadshelper]

My goal is to keep my husband safe and loved. Thank you for your kind response.

[Moojuice219]

Thank you for reaching out.

[Tippyleaf]

Almost impossible to answer!! There are of course recognised stages but there is also unpredictability!! My hubby died suddenly - choked. At that time he could still in the main mobilise around the house, usually communicate his needs, sort of feed himself. I had assumed we still had time together despite the difficulties in swallowing.

I would suggest cherish your time, make new memories, life is fragile and PSP is unpredictable so do not fixate on pre set stages!

Love Tippy

[Moojuice219 in reply to Tippyleaf]

Thank you! I’m so sorry that your husband passed away. This whole disease is traumatic.

[Katiebow]

I would totally agree with what people have posted about stages, I think it's only natural to try to make sense of these awful diseases but it really doesn't help to try to be specific and just take each day as it comes. Sufferers vary so much in how their disease affects them and my husband never wanted to go out as the disease progressed whilst others still want to embrace life. I went with what he wanted, always offering to take him out but he had no interest at all. Basically you generally have to follow your instincts to help them through their illness and try to stay ahead of the game by having things in place before they are needed and get clued up on all that is on offer to you.

Love Kate xxx