Denial

[PUTLAND]

Please could anyone tell me how to deal with someone who is in total denial. Says he only falls when I am around, even thought people tell me when he is out and about they see him falling all the time. He tells me he needs no help from me. I am at my wits end, his speech is practically gone, his eyes are closing he gets botox but it is becoming less effective.He is becoming a danger to himself when he is out because he tries to cross roads and may freeze on the middle of the road. Will not go to the crossings where it is safe. I know his strong will is keeping him going, but I find it very hard when I do a lot for him and he says he does not need my help. It is such a hard disease to deal with. We have not had one conversation about his disease. He hates visit to his neurologist because the doctor questions him on his falls he denies that he falls a lot even though that morning he may have fallen about 5 times. I feel so sorry for him but I may have to continue down this road with his denial.

[Heady]

Hi Putland, what can I say, except welcome to the club! I'm afraid your husband is showing typical signs of PSP! Not much help I know, but it might help you cope.

I'm sure if you talk to anyone caring for someone with this evil disease, they will tell you, "it's all my fault." The times I have pushed or pulled S over, or too deaf to hear him, I rush him all the time, I force him to do something, I could go on, but I'm sure you understand!

It's one of the many frustrating elements to PSP. Don't understand why the symptoms cause this attitude, but if you go back through old blogs, you will find loads of examples. How do you cope with it? Well that's the 64,000 dollar question! PATIENCE I suppose! He IS so frustrated about what is happening to him and you are the nearest thing kick. My husband hasn't got a clue what is happening to him, when he falls for no reason, then by definition, somebody else must have caused the accident! He is still talking exactly the same as far as he can hear, it's just his voice has softened and is now slurring, that I can't understand him, so I must be deaf!

The denial part, you mention, well I think that's the only sliver of good in PSP, it helps the sufferer to cope. It may be your enemy, but it's your husbands friend!!!

None of this is what you want to hear, I know! But if you can, at least of few times, remember, he can't help any of this, life will seem a bit less stressful,( every gram helps!!!) I do get very cross with S at times, when he is blaming me, but I then make a serious effort to be kind the next time. I know us carers, are meant to to angels, but we are not, just normal folk, who's lives have been turned upside down by fate. Our loved ones have got a terrible disease and we have to look after them the best way we know how. You KNOW you are looking after your husband well, it is OK for him to deny this awful condition, equally, it is OK for you to get cross occasionally!!!

Be kind to your yourself and to him, remember - one day at a time!!!

Lots of love

Heady

[PUTLAND in reply to Heady]

Hi Heady, Thank you so much for your response, its a comfort to know that I am not at fault and lots of carers are going through the same thing. You are so right" One day at a time"

Thank you so much Putland

[NannaB]

I'll welcome you to the club as well. We can't chain our loved ones to the bed or chair so just have to hope and pray they don't do themselves any serious damage as they try to carry on as if there is nothing wrong with them. My husband is past this stage now and is unable to walk unaided but 3 weeks ago managed to get off his chair and fall resulting in 8 stitches in his forehead, almost an identical scar to the one he got when he dived head first from the top to the bottom of the stairs whilst picking up a "bit" from the landing in the middle of the night a couple of years ago. Other than making the house as safe as possible, there isn't much else you can do. At first I panicked when he fell but I was shocked by my reaction the other day. I have a camera and monitor so seeing the chair empty, walking into the lounge, seeing him lying on the floor with blood pouring from his head my first thought was, another meal ruined. I know it makes me sound dreadful but I've just become used to it and although falling is rare now, it is always when I'm trying to cook that he starts to get restless and tries to get up so I can never start a meal and serve it without at least two interruptions. That's life caring for someone with PSP but I know he would rather be in the kitchen helping me like he used to and oh how I wish he could be.

Let's hope your loved one doesn't do too much damage to himself.

Best wishes to you both.

Nanna B

[PUTLAND in reply to NannaB]

Hi Nanna B, you are so right we cannot chain them down, I am just finding it hard to stand back a little. I can relate to your husband bending down to pick a "bit" off the ground. My husband seems to go out of his way to try and do things like that. I just have to let him and be right behind him and hope he does not do damage to himself.

Regards and Thank you. Putland

[LynnO]

Hi Putland,

Heady is right.

PSP can make your loved one seem unrecognizable sometimes. My husband too, tells people that I push him over. He tells our friends and his PT that I pushed him into our pond! I thought he was joking around with them, but I asked him one day why he keeps telling people that, and he said because I did it!! He truly believes that I pushed in in the pond. He also thinks that I secretly call nursing homes to get him a room. (I've never done that either!) He gets VERY angry about that. The only thing I can do is talk to him calmly and quietly about whatever he's upset about. Sometimes it works sometimes not.

B also says he doesn't know what is going on, so I explain what I can about this horrible disease without saying too much to upset him. Mostly just explaining what is going on at the moment and why. The next day he'll say...I don't know why my balance is so off or I don't know why I can't think straight. And I'll explain again. I do think some of it is denial and sometimes his cognitive abilities are impaired and he really doesn't understand. B will tell me sometimes too that he doesn't need my help. I say ok, and walk pretty close and let him do what he needs to do. We live in a rural area, so I don't have to worry about busy roads or too much traffic. His legs are becoming pretty weak, so he won't walk outside too far. I'm sure for him it probably feels like he's in a very deep dark hole, someone throws him a rope and just when he can just about crawl out of that hole, he falls back down again.

This is indeed a very cruel disease. One that if you have a dr. or neuro that has the slightest clue, consider yourself blessed. B and I don't have it figured out at all, we just deal with things each day the best that we can. You're going to get angry and frustrated with each other, as we do, but I try to do my best to remember that B cannot always control his frustration or understand what is happening. Sometimes I go into another room have a good cry, be angry about how things are, then move on. Sounds silly but it is helpful to me.

Stay on this site, it's VERY helpful!

One day at a time...

Lynn

[PUTLAND in reply to LynnO]

Thank you Lynn, Yes I have had many a good cry, and I know people who are not dealing with PSP do not understand. Its a great comfort to talk to people who understand this horrible disease. Yes I will try and take One day at a time.

Best wishes Putland

[jillannf6]

hi putland

i am sorry that yr other half is in denial as it i s a difficult disease to deal with anyway

i have PSP and since dxd 3 and half year s ago have tried to learn as much as i can about it and it is helping me get thro it-this site is great too with practical advice

i do nto know what to suggest other than your husband / partner is allowed to do as much as he can without damaging himself otherwise it will b a long hospital stay for him if he breaks a bone or two

(way b4 i iwas dxd i broke my ankle - fell out of my chair1 evening and was in hospital for 2 weeks then at home non weight bearing for another6 weeks

then i recovered but my balance was still poor and i tended to fall over now and again but not as much as now - 14/15 times on a good day

oi am still here upright most of the time apart from when i am on the floor having fallen ad have the slower sort of PSP which means i may have a couple of years left b4 i can do nothing for myself

scuse the dyslexic typing !

lol Jill

[PUTLAND in reply to jillannf6]

Hi Jill, It is so good to speak to someone with PSP and accepting it. I agree to let him do as much as he can, and keep a close watch on him, but at times its hard as he can just go out on his own, and I am sure he is having much more falls than I know about. He is so lucky so far that he has not had serious injuries, and hope it stays like that. I wish you the very best and thank you so much for replying to my plea, and letting me hear from someone who has PSP and it looks like you are dealing so well with it.

Love and best wishes Putland

[jillannf6]

hi putland

i forgot to say welcome to the site1

lol JIll

[jimandsharynp]

You are in a tough situation for sure. You are not superhuman though. You can only do what you can do within the parameters he allows. Just do your best and keep trying to convince him. Don't give up on trying to get him to change. He might just change and take your help at some point and you don't want to miss that point in time by not asking. Jimbo