Shocked and confused

[Stephanielayell82]

Hello to all of you wonderful people! I'm happy and confused all at once. My loved one has suffered from PSP since 2015 maybe a little longer. The last 2 years we've been in declines examples speecg almost gone most days, lack of eating due to swallowing complications, sleeping more, vitals getting lower. She is completely a 100% assist shes beem chair bound since 2018. We still get her up everyday dressed and everything normal people do. We still even take her out shopping and adventures. She went from 170 pounds to 90 pounds. She has hortible fluid retention. But the last couple of weeks she begins to put weight back on and can even more her feet a little more then previous years. The brain is getting worse but everything else seems to be getting better. Has anyone experienced this of coming all the way back to normal? We have had hospice for almost 2 years they have told us several times the end is near. I tell them no matter how bad and for how long she declines she will spring back and she has. I know one day she won't be so lucky to do so. And i would love for her to be with us here on earth. But with that being said I've dealt and found ways to deal with the.physical part of the disease but nothing can be done about the dementia part. Just wondering if anyone has seen this in their loved one? Have a bless day!

[redyi]

Hi we have had exactly the same thing with my partner who has had PSP for several years but in the last few months has suffered a marked decline in loss of speech, mobility, eye sight and weight. He has started eating soft foods again. This condition is so unpredictable and so many strange things happen at different times. I do not think there are any answers we just have to be there to support them as best we can. My partner has been in a care home for nearly 2 years and at least I know they can keep him safe from falling 24/7 which I could not continue to do. Thoughts are with you.

[Stephanielayell82 in reply to redyi]

Thank you for sharing your experience. I could understand more if she intakes more or a very fatty diet...but yes unpredictable it is. Good luck to you and your partner!!

[LuisRodicioRodicio]

It has not been in our case. I can't make suggestions.

Hug, luck and courage.

Luis

[Stephanielayell82 in reply to LuisRodicioRodicio]

Thank you for your kind words!

[easterncedar]

yes, we did experience some sudden improvements as well as downturns. The improvements didn’t last, so I tried to take advantage of them to boost food intake, enjoy the communication, do a little PT if it was possible. We had a few quite dramatic happy swings, one that lasted a few days and made it possible for me to get him home from care just a few weeks before he died.

[Stephanielayell82 in reply to easterncedar]

Thank you for sharing your experience. Hope you are finding comfort he is no longer at the mercy of this horrible disease. Do you mind telling me what made him pass other then the PSP? We've always heard asperating phenomena was the thing to watch for but have learned it could be a handful of things. If that is to personal to share i understand completely. God Bless you!

[easterncedar in reply to Stephanielayell82]

He had been having some confusion and difficulty swallowing, but when he learned we had called in hospice, he decided to die. He ceased to eat or drink, refused even ice chips. He accepted a little morphine only when I assured him it wasn’t anything that would nourish him. He lasted 10 days. I couldn’t believe he would stick with it. I thought he might forget from day to day. But he didn’t.

[Stephanielayell82 in reply to easterncedar]

Thank you for sharing! We have a lot of that happening currently as well. I just wish her to be free of this horrible disease.

[Dogshit1]

my partner was diagnosed November 21 after years of different consultants trying to find out what the illness was. He has deteriorated really quickly being now completely bed bound and doubly in continent and his speech is really quiet.

We do however have really good completely with it days where he’s aware of what’s going on but mostly he’s tired and sleepy, he has also lost half his body weight. It’s so sad to see someone you love completely change and knowing they’ll never return to the person they were

We are lucky to have carers four times a day to look after his care, so he can st@y at home.

I’ve just read the report about Dudley Moore who also had this horrible illness

He knew exactly what he had but my partner doesn’t seem to grasp what he has and it’s awful to watch him suffer every day in this way

My heart goes out to every carer who has a loved one suffering from PSP

[Stephanielayell82 in reply to Dogshit1]

Yes we have 7 carers hired as well!! I admire everyone who has any dealings with this nightmare. My loved one is home as well. Prayers to you guys on this journey!! Thank you for sharing your experience.

[Cantiga]

I am so bewildered. I was getting ready to start hospice and now I’ve had three days of pretty good speech and walking. Then this afternoon I started to groan again. I don’t understand how in a progressive disease you can go back and forth

[Stephanielayell82 in reply to Cantiga]

Yes it is the wildest disease I've ever dealt with. The loss and gain of it. It's almost like being able to see what is to come in the future sometimes. I'm sorry your dealing with this disease! Best wishes to you