I can do it!

[TinaT]

Hello to all,

Finally got a visit from two occupational therapists to assess whether they could help with husband Ken's movement problems. I wanted them to assess him for help getting a wheelchair more than anything as shopping in town is almost impossible because of his balance problems. He suffers from Lewy Body and can at any time of the day suddenly walk like a drunken sailor (often when he is physically tired). His stomach pushes out, his shoulders go back, and he lists to one side. He aso suffers from 'restless leg' symptoms and cannot sit still for even a minute before his legs or arms are on the move, or he is pacing aimlessly around the room.

After questioning me about his difficulties they decided to put him through his paces. He marched as steady as a Grenadier Guard! He jumped up from the toilet like a sure footed Jack in the Box. He rolled himself in and out of bed like a gymnast! He was so proud that he had been able to show them how good he was. He had tried his best to show them "I can do it"

I was mortified after all I had (truthfully) told them about his difficulties. I find that often when we have visitors who stay only a short period, he is 'on his best behavior' but the minute they leave, he reverts back to all his Parkinson/Alzheimer problems. I explained this to the occ. therapists but they said they had not come across this 'on/off' behaviour before. I felt such a fool! They did arrange to visit next week and reassess him. They were only with us a short time and the tasks they set Ken were done just the one time and very quickly completed.

Now what do I do next week? Hope that Ken will perform in the way I always see? Shall I deliberately get him tired? Delay giving him his sedative which helps dampen down his problems? Ask them to stay with us a couple of hours?
I understand that in order to get help the problem has to be demonstrated to the professionals but why, oh why, can't they be understanding of this dreadful disease and accept my detailed descriptions? After all I am the one with him 24 hours each day. Also why would I ask for a wheelchair if I didn't need one?

Has anyone else come across this on/off behaviour of sufferers? Or been in a situation where you feel pressurised to prove something?

 

[Amy]

Hiya Tina, I have moved your thread to the main forum as I think it will receive more responses here. Hope that is OK.
Love Helen

 

[connie]

Hi Tina, felt moved to answer on this one.

First time physio's came home to assess Lionel he behaved exactly like your husband. He danced around as if he was auditioning for Fame.

That evening he jolted and jerked for about two hours and then just slumped to one side. Did anyone believe me? "NO" In the end we purchased our own wheelchair. How I sympathise. Hope you get something worked out. Love

 

[TinaT]

Dear Conie

I love your sense of humour and laughed out loud at the image you conjured up. Many thanks for your reply. We do need a giggle now and then!
Hugs TinaT

 

[noelphobic]

I have heard this phenomenon (sp?) described many times as 'putting on a show'. My mum did it when we had a meeting in her nursing home with a Social Worker. She appeared much more communicative than normal. When she couldn't answer the questions she turned to me and said 'what do you think'!

It did result in the Social Worker putting on the report that my mum had a close relationship with her daughters

Luckily in this case the meeting was at the instigation of the Social Worker and didn't affect funding or placement etc so we weren't particularly worried about how well or badly she 'performed' (that sounds awful but you know what I mean!)

I suppose the answer could be to videotape him but that obviously raises questions of ethics, consent etc. If he knew he was 'on camera' he could well perform for the camera as he did for his visitors and if he didn't know he was being filmed, well, that's a tough one.

 

[alex]

Hi Tina

My circumstances were different to yours, however, my partner always seemed to perk up whenever a doctor came on the scene, he was a doctor himself, so i always thought it was a professional reaction, something he was used to doing all his life.............another thing that was strange was that he was unable to move or talk, but if you put a phone to his ear, it was as if it switched him on and he would talk! (he would only yes or no, but that was more than he had said in weeks) so i used to ask my friends to phone while i was with him, luckily he was in hospital so the medics knew he was not normally like that.

It is difficult when you feel as though no one believes you, as Brenda says, i think i would be tempted to video him when he is not at his best, or have a relative there to back up what you say.

Don't give in!
Love Alex x

 

[jenniferpa]

I would say videotape him, but if they won't believe you, they probably won't believe that either, so I think you'll need to tire him out. How on earth can they say they've never come across this off and on behaviour?

Jennifer

 

[Jilly88]

My aunt is exactly the same. She will be screaming for food or screaming for me, says she's dying, screams 'HELP' all the time, says she can't walk etc etc etc.... when the GP shows his face, Honest to God, she calmly says 'Oh hello Doctor.. how are you this morning?' She holds a sensible conversation until the minute he goes... then the screaming and tantrums start again!!! It's the same when Social Services come round, so I video taped her and showed the Doctor. He said that they can hold things together with someone they know has authority. She even remembers his name - even after a couple of months. Again I was told that it's not uncommon. Like you, I felt as if the authorities were looking at me as if I was making the whole thing up, but I've had confirmation from the CPN who visits, the GP, the District Nurses, Social Services that this is something that Alzheimer's sufferers can do.
It's infuriating, but that's the nature of the illness I suppose.
Take care.
Love
Jilly

 

[Nell]

Oh yes! I sure do identify with this. When I had to take Mum to the Accountant I made sure the accountant knew in advance that Mum had AZ and not to expect too much from her. Mum was better than Donald Trump on a good day about her investments etc. (things I was sure she didn't even remember!)!! Later I said to the Accountant "you must have thought I was a dreadful liar!" - to which she replied "Oh, no! My grandmother has AZ and she does the same thing!"''Also Mum will complain bitterely about the doctor that visits the NH and when I ask staff about what she's said they'll tell me she told the doctor she was "fine thanks doctor"! How the poor man is supposed to divine that she has any complaints I don't know!!

I have another relative with a mental illness and I've noticed he can "hold it together" for short periods and appear totally "normal" if dealing with professionals or those not close to him. I think this is a very typical pattern for all types of mental illness, including AZ. Nell