Not been on for a while but have read all the posts
At the moment my head thinks it up my backside
Archie has been up and down for last couple of months but the good thing is he’s not been in hospital since September.hes had about 5 bouts of infections which have been managed at home with the great care he gets from the carers. His speech now is totally crap but we try to understand him he also thinks he’s going to get better and walk again but no chance he’s now hoisted altogether also thinks he can have his peg out eventually but his swallow is that dangerous nothing passes his mouth anymore and that’s after a year on peg . The thing now that is so puzzling is he wants to go see his mum because today he thinks she is still alive after 19 year when she died . This has been my hardest challenge as all afternoon he done nothing but cry cause he cannot believe he didn’t know that she was gone . Ive seemed to manage all throughout is thing he has but today it’s gone to a different place.
On saying all this cause I’ve wrote it down makes it feel a bit better as nobody but this site understands
Sorry that I have rattled on about this as I know everyone is dealing with the complications of PSP
Sending all my love to everybody
Sue xx
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Suebatt
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Hi Sue, you’ve just brought a memory back and a lump to my throat. I remember my mum having a very similar conversation with my dad and his mum has been dead for over twenty years too. It’s a natural reaction to want your mum in times of trouble, no matter how old you are, it’s a primeval instinct I suppose, a need to be comforted and reassured by the person who has known you since before birth and complicated by the brain playing nasty tricks. Mum just gently reassured dad at the time and tried to calm his obvious distress, it’s heartbreaking, all you can do is to be there for him and I hope that you have someone to be there for you too. Thinking of you with sadness. Ruth x
Yes PSP is heartless and cruel and it is difficult to truly explain to outsiders the complexity of the horrors our loved ones are forced to endure at times. Just when you think you have a bit of a handle on it, something comes completely out of the blue and catches you unawares. It’s emotionally exhausting. I’m very relieved to hear that you are not alone in this and wish you all strength to cope. Regards, Ruth x
Oh what an awful ilness Sue. It's very tough. My husband diagnosed July 2016. . I have had an awful lot of visits recently and really takes its toll on both of us. Then night's are not good at the moment. X this is truly a great site.
Gosh, you are really in the PSP wringer. My heart goes out to you.
Yes, its an emotional and practical / medical roller coaster, with knobs on.
FWIW - My take is that honesty (with petty deceits) wins thorough every time.
What I have consistently done with my lovely is to tell her the truth, point out that it is the illness causing this flawed thought and then to say that this memory flaw is most likely a passing thing, because PSP does not affect memory as such. Then to go on and re-enforce the fact, with examples, that they are still cognitively competent and not loosing it.
I do everything to bolster her confidence in her her thoughts and perceptions. For without that she would have nothing.
One thing that I’ve always been with him is honest unfortunately I tell him straight when I say things he doesn’t like he calls me a 1st class bast—d .it least I come 1st in something.his new thing with him too is that I’m having it off with the joiner upstairs .well we live in a bungalow so that’s different and I always walk away smiling
That really made me smile Sue, after your earlier, sad post. Humour really does help us through the bad times.
Yesterday evening my husband could do no right with calming his Mum down. It was a constant "I want to go home. I want to go home. I want to go home. Neil, I want to go home" Then, after trying to distract her and chatting about something on the TV an advert for O2 came on, then it was "I want to be on O2. I want to be on O2. NEIL *shouts* I want to be on O2." Off and on for about an hour. Not funny at the time for Neil, but quite amusing afterwards.
Yeah I would be lost without humour but they all are very trying at times
He was at it again 9.30 last night telling me and carers it was morning I go into let’s have a reality check then I have to walk away cause I have a gob on me that gets carried away but 20mins later he is asleep and night carer looks after him
Hahahaha My husband was the one with the girlfriend....It was his carer, infact they danced together a couple weeks (months?) before he moved on to Paradise....
As I remember B could've had several lady friends in his day.....he never did; though he did have a crush on a young German girl.... Sprechen sie love anybody? haha
I like what Kevin said Sue, and remember how I would help dad , B, with dreams and such and just give him the truth and words maybe he could hear and make sense of and solve the problem with.....I am glad your family is near ....and um....keep smiling hahah
Hi Sue, I never saw this with Steve, but I did go through it with my grandmother who had Alzheimer's. It's very sad, I agree with Kevin, gentle honesty, if you have to face the truth. Or try and avoid the subject if you can.
I would talk to your doctor though, could be yet another UTI.
Thanks for that he had a uti a few weeks ago and he’s clear now we had Matron here today to check him as she comes ever 2 weeks and I text her if I need her before hand .my home is like a mini hospital only thing we haven’t got is oxygen when needed
Sue my heart goes out to you, George also thinks he can walk, and is going to get better, the other day I went to the loo found him trying to get out the chair, when I was coming out the door, send shivers down my spine. George was always saying I was having an affair with the man next door, sending you a big hug. Yvonne xxxxx
This disease seems to enjoy dishing out the dirt doesn't it! As if things aren't difficult enough it starts to play mind games. I hope this phase soon passes for you Sue, it must be so difficult to deal with. Ben hasn't ever asked or accused me of having affairs or talked about people who are no longer with us but I know it can happen, I'm hoping it's a phase he doesn't go through. I'm not sure I would understand him even if he did as his speech is so poor.
Hope you're feeling better now, Sue. Chris never thought I was having an affair - although he offered to divorce me so I could find another man ! - but he did often get confused about reality. It seemed to me that he had had a deep dream and couldn't separate it. It felt cruel bringing him into reality - he looked so puzzled.
Hey Sue, hows things today. Is husband still having a moment of sadness? I don't think B ever did that but we did go to a store once (actually a salvation army I was looking for just a 2d hand I can't remember and my husband started looking for suits! Why? i inquired. He wanted one for his dads funeral.....You're dad isn't gone dear he's fine.....Luckily he did not find one to 'suit' him and I did remind him of the ones he already had....His dad is still alive...
If he continues to progress in a dementia like behavior, your doctor may be able to help him with mild antidepressants or others meds used for such consuming sadness....
I hope you are doing ok .....and please, thankyou so much for sharing darlin....always welcomed words
So sorry, I totally understand....What a wicked disease, robbing people of their minds and ability to function with dignaty. I pray for those on this sight...you are not alone albeit we feel all the time
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Just when things looked ok!
Psp pueomia in last stages
Swallow test - passed with colors, just not flying colors
I have been dreading the day that I would post this message.
