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?
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?