PSP Association
5,296 members7,289 posts

Tumbling Down

Charles is not eating anymore, the jaws are so painful. Just drinking fluids.

The antibiotics for the UTI aren't working yet and he is sleeping a great dea.

Morphine plus infection makes him clammy to the touch, hot while cold.

We see the journey ending and I'm not handling it well.

He told me not to cry, it reminds him of the disease. Well, I can't help it, I'm not a robot.

And, anyone out there, PSP patients' sometimes don't know what they are saying, right? I'm hurt but will persevere until the end. I love him so.

Cuttercat

20 Replies
oldestnewest

Cuttercat,

I am so sorry for what you are going through right now. From what I have read, PSP patients will say things but aren't really feeling the emotion of what they are saying. It is almost like just stating a fact and not emotionally invested in what they say. I know it is hard to always be the strong one but just being by your husband's side will comfort him. Hugs and prayers for you and your loved one.

Diane K

5 likes
Reply

I'm so sorry. It is just so hard to watch our loved ones suffer this way. He might be thinking of you when he's telling you not to cry, I know that is impossible. Just talk to him and tell him that you love him. This is a difficult journey we're all on, I wish the both of you a tranquil end xx

4 likes
Reply

PSP is so hard to deal with and no one knows what the sufferer is going through it is unimaginable. Love hugs and comfort are all that can be given.

With tears in my eyes I am so sad for you. Jx

4 likes
Reply

Thank you honey. Quiet here now.

I'll persevere but it's so hard as everyone here knows!

Cuttercat

1 like
Reply

MORE THAN HE NOT KNOWING WHAT HE WAS SAYING, IT WAS i WHO DID NOT KNOW WHAT HE WAS SAYING....SORRY ALL CAPS,,,

It is jsut a good time to reassure him that you are still his wonderful wife. rise above the pain if you can. Read to him listen to some music or watch tv....even though he is sleeping, the sounds may comfort him that all is alright with the world.....I could not help but cry....but then I would find resolve and tarry on to what needs to be done.....It is good for you to step away from PSP for awhile and think on happy things,,,,If all you can do is walk down the hospital hall....I just encourage you to be as calm and comforting as well as comforted that your husband loves you ....so does the Lord CC and so do your friends here at PSP....remember to lean on all of us.....

((HUGS))

AVB

7 likes
Reply

Hi Cuttercat, another heartbreaking post, I'm so sorry, Psp is so bloody evil! Sending you much love at this most awful time ❤️ X

5 likes
Reply

Hi cuttercat sending you a big hug at this so sad time, my prays are with you xxxx

3 likes
Reply

Of course you both love each other as you always have.

Its hard to see the other suffering and we are all trapped. I am often in tears trying so hard to interpret what Chris is saying. At times he has said things I know are not true, like wanting to go in a Home ! For him there are times when he says the opposite of what he means. PSP plays games with the brain.

We are left with the love that has been there all along.

Big hug, from Jean xxx

4 likes
Reply

Yes Jean, yes. The PSP plays games and he doesn't remember, but we still have the love that was there all along. I have to live with that. The rest is disappearing and my gut is anxious as the days wind down.

Thanks,

Cuttercat

3 likes
Reply

I know. xxxx

1 like
Reply

Sorry to hear about all the difficulties you are having. Just try to keep in mind he is your husband and very ill, things may get said/done that aren't a true representation of how he really feels.

Dad's psychologist, she visits about once a month to watch for any dementia, says emotional outbursts completely unrelated to the situation are not uncommon and just take them with a grain of salt so to speak.

Wishing you the best possible.

Ron

3 likes
Reply

Sending you both much love and strength xx

3 likes
Reply

So sorry Cuttercat to read your post . I get completely howbyiure feeling it's so difficult . I hope some peace comes both your way xxx

2 likes
Reply

I'm so sorry for what you are going through. I know it's easier said than done, but be strong to help him through this disease. It's horrible for anyone to go through it. Talk about the good memories you have together. My dad never wanted to talk about the end but Mom said he did start talking to her about old times and the people he would be reunited with. I think that was his way of accepting what was to come and maybe make it easier for mom knowing he would be OK. Prayers and hugs to you.

2 likes
Reply

Yes I think Charles is like your dad, doesn't want to talk about the end.

Bless you.

Cuttercat

Reply

I'm so sorry to read this, it made me cry, I'm thinking of you both at this difficult time...

With my love and hugs....Pat xx

1 like
Reply

Stay strong. My prayers are with you.

💛🙏

1 like
Reply

Dear Cuttercat, I'm so so sorry to hear about your plight, you must feel so helpless after caring and coping for the last few years and now can feel Charles slipping away from you. I'm dreading when Ben gets to that stage and I only hope that it all happens quickly and painfree, I can't bare the thought of him suffering for a prolonged period it would be just too much. Sending all of my love to both of you.

Kate xx

1 like
Reply

Thank you Kate. He's in such pain with the jaws. But you know PSP, his brain is lucid so we have some time for memories. He doesn't want to leave the bed either. I just hope I can keep him at home. He wants that.

Cuttercat

2 likes
Reply

My Mum has PSP and speaking is virtually gone for her. Whilst she is not suffering from an infection at the moment she is declining quickly. She is being cared for by an old boyfriend who has moved into her house to look after her for as long as possible supported by carers . He rang me in a distressed state because as he was dressing her one morning she said quite clearly and distinctly I am not worth it. I told him she probably didn't really mean that and it is the disease speaking.

Hang in there

Steph

Reply

You may also like...