Vacant look

[richmond1]

Worried about mum, I know that psp affects the eyes and I've got used to her glare but somethings different today the only way I can describe it is mums vacant, I have managed to understand her abit and she says she feels rough but that's all she says. She doesn't want me to call a doctor, which I understand because when she could communicate better she told us no more treatment or admission to hospital. I was just wondering if anybody else had come across this vacant look x

[Satt2015]

Hi Richmond

Yes my dad has a very vacant look a lot of the time!

It is worrying at first but now I'm used to it, I think it's quite normal in Psp

It's difficult isn't it? If your mum feels rough, might be an idea to call 111 but I agree with her no hospital admission it's way too stressful unless vital

X

[richmond1 in reply to Satt2015]

Mum made it clear to us no more treatment/investigation her words were (when her communication was better) no more I've had enough, it is documented in the hospices notes she doesn't even want treating with antibiotics if she develops infection. Her preferred place of death is home but she will go to the hospice if not managing/coping at home. It is difficult seeing there is something not quite right and not phoning 111 but I have to keep telling myself this is mums wishes.

It is so difficult Satt xx

[Satt2015 in reply to richmond1]

Agree very difficult Richmond but I understand if that's your mum wishes then that's your mum wishes and you can't go against that!!

Must be very hard though?!

My dads wishes are to be at home n if absolutely necessary the hospice, no where else

We've done the advanced care plan too, refusing peg but will accept antibiotics if they'll help.......

We've also done a DRO order

God, it's all so depressing isn't it?

Huge hug X

[goldcap in reply to richmond1]

Richmond 1 you are doing the right thing. I know it is difficult to do to say the least. My mom did not want interference for her heart condition and she went more peacefully than I ever could have imagined. I plan on honoring my husbands wishes for non intervention for his PSP towards the end. But really how does one figure that out? For now antibiotics are ok but no feeding tube. He was adamant a out that when he made a plan when he was diagnosed. Good luck to you and stay strong. Best GC

[easterncedar]

I think I know that look, and it comes and goes with my sweetheart, with no pattern I have detected, although I think it's progressively more frequent. It has happened when he is running a fever, for sure., but also just happens, and I think he doesn't really recognize me then, although so far it has always passed off. I admire your mother's determination. It's what I would say, but my guy wants to fight to the last, and I wil try to keep him home to the end, but realize I need to begin preparing to fail.

[goldcap in reply to easterncedar]

My husband "s stare patterns are almost identical to EC's guy. It is normal with PSP. But if she rubs her eyes or indicates head pain it could be something more. Can you give NSAIDs or other over the counter pain relievers for discomfort? Helped mom immensely .

[aliciamq in reply to easterncedar]

The same here, I told a friend once - I think he might ask me who I am ~~~~

[Escada29]

Hi my partner J has been looking really rough aswell keep thinking he is heading for the exit door. It does my head in because I just dont know its like living on egg shells I am sooo tired of all of it xxxx

[goldcap in reply to Escada29]

Escada , so has mine. Takes more to engage him. More frail looking and acting . I am exhausted as well. Looking for new helper as old one had family responsibilies to take on. Forgot just how hard this is to pull off alone

[Patriciapmr]

Keith has that strange staring look most of the time now, it's like he's in his own little world sometimes. It is one of the symtoms of PSP unfortunately, that and hardly ever blinking hence the sore, dry eyes.

I agree about avoiding any hospital visits unless it's absolutely vital, they're a nightmare to say the least because no one has even heard of PSP, let alone try to look after someone with it!

Love and hugs....Pat xx

[Heady]

Might be worth having a chat with the people at the hospice.

Lots of love

Heady

[richmond1]

Thankyou for all your lovely replies, I just got an awful feeling that something not right with mum, if still concerned tomorrow I'll speak to palliative care nurse. It's a emotional roller coaster Drs have prepared us 3 times to expect the worse and mums proved them wrong she fought it all the way but her fights gone she just looks ready (I know that sounds silly) heartbreaking wish I could post something positive for once all I seem to do is moan xx

[NannaB in reply to richmond1]

My darling has the vacant look all the time now and has done for about a year. He can't move his lips so his mouth is either clenched tightly closed or wide open, if asleep, always wide open. Very occasionally, rarely in fact, if something good happens, I see a faint glimmer of a smile; just a twitch at the corner of his mouth but as it is only when something funny happens or the grandchildren arrive, I know it is a smile and the man I married and love is still there.

He now frequently has what the GP called a neurological blip when I think the end is near but each time it lasts for about 24 hours and then he is back to "normal". His temperature rockets, he drips with sweat and has very rapid breathing. It has happened so often I no longer call the doctor. I give him paracetamol in case he is in pain and Lorazepam to relax him. This calms his breathing. It's scary when I see him like this but I'm prepared for the inevitable. It would be easier for me if I had some way of knowing when the inevitable will happen though.

I hope your mum is pain free and comfortable through this next stage.

X

[easterncedar in reply to NannaB]

Oh, NannaB, it is so hard a time, and yes,, I do think knowing would be a comfort. My guy is still aware and with me much of the time, but he conks out intermittently and then is awake and restless and it's hard to plan or pace any activities. And I feel I'm robbing him of his remaining opportunities for experience and entertainment when we go days with nothing for him but eating and sleeping.

[NannaB in reply to easterncedar]

I know what you mean. C goes to the hospice on Fridays and I try to take him out on Tuesdays and Thursdays when he doesn't have a sitter. Not if he is zonked out though. When he is like that I don't think he would want to go out so don't worry about him sleeping. We can only do what we think is right at the time can't we.

X

[abirke in reply to NannaB]

Wow NannaB. I have yet to experience this blip w B. Though R1, the mask as they call it, is something I do experience w B. when he falls or I'm miffed he didn't call me which led to a fall he gets a sort of guilty "oops" expression combined with a high whine .... Everything that he is going through I have to take care of myself, even when to see the doc and to tell doc what to do.

How amazed I am that we have gone above and beyond normal duties . It still just amazes me . there was another carer whose wife had temp spikes and rapid breathing which led, I think, to the same diagnosis, "Neurological blips"....how strong we are to to be led to the edge only to be pulled back at the last moment!

God Bless each and everyone of us, starting with the patients and continuing through to the carers...I think MY temp is spiking!

So R1 a blank stare and or a surprised stare or even I just read a Mona Lisa Look, is indicative of PSP.....Congratulations that your mom talked about and made her wishes known.....not an easy topic in the first days (denial)...and an almost impossible topic (neurologically) in the last days! Get conversation done now everybody!

AVB

[easterncedar in reply to NannaB]

P.s. And of course my life is just as circumscribed as his in many ways, as is yours and that of all of us. It doesn't bear thinking of.

[ketchupman in reply to NannaB]

This phase went on for about 7 months with Kim. Temp would be normal and then 102.5. Mouth tightly closed except when asleep. Impossible to brush the inside of her teeth. Blank stare and just looks at the ceiling while in bed. Little to no communication, except an occasional thumbs up/down, and eventually even that stopped. But sometimes out of a blue moon, she'd whisper "I love you" and I'd burst into tears. As tough as it was, I'd give ANYTHING to have her back for just one more day, to hold her, to love on her, and tell her how much I love her. Looking forward to seeing my baby in Heaven some day.

Ketchupman

[richmond1 in reply to ketchupman]

Ketchupman sending you lots of love and hugs, I can't imagine how difficult it is for you. Thankyou for posting your heart felt comments xx

[NannaB in reply to ketchupman]

And I'm sure you will Ketchupman. I hug my darling but because his arms are fixed he can only move his fingers which he will use to stroke my face if I put it close. I don't want him to suffer but I don't want him to go either. I know I'll feel like you one day.

I'm sending you a big hug. I know it's not real but just to let you know I, and many others, are thinking about you.

With my love and prayers.

X

[ketchupman in reply to NannaB]

I do feel the love my darling.

Ketchupman

[goldcap in reply to ketchupman]

K you just broke my heart . I am tired and off today but I will touch him a little gentler and whisper I love you because of your post. Pleas know we are all still here for you. PSP is an I breakable bond. Big hugs, Jayne

[goldcap in reply to NannaB]

OMG Nanna bless you! My husband is doing this right now and I was at wits end trying to decide if I should deal with the whole hospital thing as his doctor is not available on a regular basis. He is having everyone of the symptoms you described. I rarely get on here in the middle of the day but for some reason I felt compelled to look up a reply I was texted by EC so thanks to you too as well Girlfriend. Love you both.

[NannaB in reply to goldcap]

Hopefully Goldcap, your husband will be back to "normal" by tomorrow.

Love and Big hugs to you.

X

[goldcap in reply to NannaB]

Nanna he has yet another UTI and is on antibiotics. A visiting nurse changes his catheter out once a month but at the hospital they said it should be more frequently. I don't know...

[NannaB in reply to goldcap]

Oh no. It's never ending isn't it. I hope the anti bs kick in fast.

X

[goldcap in reply to NannaB]

He's much better now Nanna thank you

[NannaB in reply to goldcap]

What a relief, for both of you.

X

[Satt2015 in reply to richmond1]

It's fine to moan Richmond (I do l the time) and let's be honest you have something to really moan about my darling

Your in my thoughts

Big hugs x

[goldcap in reply to richmond1]

Richmond one thing major I have learned from everyone on here is to trust your gut instincts. No one knows your love ones like you do. That being said know your feelings or instincts are never silly. A positive note; this disease never makes sense or follows a direct corse. You just never know when an event is "it" or a major rebound is around the corner. Think we have all learned to be flexible and expect the unexpected. I'm getting confusing so I'll shut up is. Take care.

[richmond1 in reply to goldcap]

Your not getting confusing gold cap it lovely how people take the time to offer advice, I've said it before I really don't know what I'd do without all of you xx

[Tttp]

Hi Richmond, I have been noticing the last month my brother has that vacant look also in his eyes it bothers me to see that but I know it's a part of the PSP. Hope all goes well for your mother, take care. Nettie