Psp

[Baily2357]

This disease has to be the most awful frustrating ever I feel like making a record of my voice (don't do this ) do this HE WILL JUST DO WHAT EVER

[AnneandChris]

Hello there

I'm afraid it is all part of this horrid disease. Sadly there will come a time when he won't be able to do whatever. So, be patient, I know it's hard, but believe me it's going to get harder. As this phase passes he will be safer and not so prone to falls etc. etc.

So please just keep on keeping on.

Hugs

Anne

[NannaB]

He will I’m sorry to say. I bought a baby monitor so I could see him when he was seated and ran to him the minute he got up saving many falls. I could also talk to him and him me which settled him as he liked me being with him. I also found that changing the way I spoke helped. Instead of saying don’t get up, I said stay sitting on your chair etc changing everything to a positive as he only seemed to remember the last few words. It’s very hard but try not to get annoyed with him. I never got cross with my husband and frequently told him I wasn’t cross with him but only the illness. If I shouted, (which I did often during the first few years) it was at God, not him. This has helped me since he has died as I have never looked back wishing I had done or said something different, no feelings of guilt have helped me create a new, very happy life after 44 years of a very happy marriage. As Anne said, it’s going to get harder, for you but especially for him.

Very best wishes.

XxxX

[SewBears]

It is frustrating to have to repeat yourself over and over and then wait what seems like forever for them to communicate back to you if they understand. Only to have them ask the same question 2 minutes after you think the issue (whatever the topic was) was resolved. I try to be patient but sometimes I roll my eyes and then I hope that he doesn’t see me. The saddest part is knowing that it’s not going to improve. He’s in there but I never really know if he’s with me or not. I try to remind myself that his brain is being eaten away and that helps me to be more calm with him but this is the HARDEST challenge that I ever had to deal with. Whatever will I do when it gets worse? Today I caught my husband leaning too far forward in his recliner while I was making breakfast. He had dozed off and he came very close to falling out of the chair and onto the top of his head. I’m so thankful that I was able to catch him in time.

Tonight I can’t sleep. For crying out loud! Just telling it like it is, I guess. Sorry, needed to vent and thank you for letting me do that. Phew!

[SusieTess in reply to SewBears]

I’m so glad that I read your post because I’ve been feeling the same way and have felt guilty at times because of it. My husband tries to make things easier for me but it just makes it worse...example...he decided to set the table for dinner by taking the soiled dishes and utensils out of the dishwasher, thinking they were clean, and proceeded to set the table...I know it will get worse but it’s so difficult to see “ my rock” slowly leaving me after 57 yrs. together....my consolation is knowing I’m not alone....

Take care and keep sharing....Kathy

[SewBears in reply to SusieTess]

57 years together is amazing! I know what you mean about them wanting to help. My husband tries to shrink himself if he thinks he’s in my way. It’s funny but annoying. I mean, to me it would be easier if he stepped aside, but he tries to roll his shoulders in and crouch down instead of moving.

The best medicine for me is laughter!

Sometimes they understand what’s happening and you never really know what they’re thinking.

My sister is having a Christmas party and we’ve been invited, even though she knows that my husband cannot tolerate huge crowds. Hubby’s comfort zone is here at home with one guest at a time. My sister doesn’t understand that I don’t want to go to the party by myself. She called and told me that she knows someone who is 20 years old and she could sit with him while I go to the party. When I hung up the phone my husband wanted to know what the call was about. I explained about the upcoming party and I mentioned what she said. Without missing a beat and with a smirky smile on his face, hubby said “can she bring two?” Meaning 2 twenty year olds. Now there’s that sense of humor that I married! Made me laugh.

[Heady]

I know, I know!!! We would be at the top of the hit parade if we reIeased the record. I can remember it very well. I could never trust my husband not to get up and wander, even when he was totally wheelchair bound, he could still surprise me (and the dog), by getting out of his chair. Listen to NannaB, make the last few words be positive. Instead of, "don't get up" try "sit still". Same with everything, try changing how you ask a question or give instructions. It even works occasionally!

Try not to get upset, this is part and parcel of PSP. I always felt two people have this evil disease, one has the symptoms, the other suffers from them. I am afraid, this is you suffering. Your temper is caused by PSP, so don't let your frustration turn into guilt. There is no room for that in your lives. Anyway since when was it a crime to shout at your husband??? Thought it was part of the contract! Makes them feel that life can still be normal, well that was my excuse and I'm sticking to it!!!

Sending big hug and much love

Lots of love

Anne

[Kmacgamwell]

It is so frustrating.

I am beginning to believe that my husband's defiance is how he fights PSP.

[JCRy in reply to Kmacgamwell]

Yes...that is Ian's way of fighting for his independence for as long as possible, though, fortunately he doesn't get angry with me...just so tired and frustrated.

I don't think I provoke this, but I do like yo see this spark of determination occasionally! Everything takes sooo looooong, though!

Juliet x

[Wifey4U in reply to Kmacgamwell]

Yes I’ve suspected that as well.

[Baileyboo]

Hi, I can't say anything that can help but I know how you are feeling.

PSP is vile and unrelenting. You will become frustrated at times. Whatever you do don't feel bad about anything you do or say. I remember being in that protection mode. You can't help wanting your partner to be safe and unhurt.

I hope you find a way to deal with this vile disease that doesn't make you feel guilty. I know it's hard.

Love and hugs to you both

Pat xx