My husband was diagnosed with Parkinson's 16 years ago. Dementia was diagnosed in 2009. He is unable to walk or stand and we have carers at 4 hour intervals to change him as he is now doubly incontinent. His speech is inaudible despite many speech therapy sessions in the past. His cognitive problems prevent him using techniques learned earlier despite reminders to take a deep breath, focus on words he wants to say etc etc. there is very little real communication between us and he often fails to answer questions or chose from alternatives which I realise is due to his mental health issues.
He often grips hold of parts of the equipment being used and is unable to release his grip. He also holds on very tight to carers' hands or wrists and this can be quite painful. Any advice on dealing with this would be helpful. Does anyone else have this problem?
I have quite a good care package but that in itself is intrusive although without it I would be unable to care for him. Is anyone else in my situation? I am 68 and my husband is 70.
I do try to take my husband out in the wheelchair but he finds the activities which we used to do together eg singing, Group Meetings, meeting up with friends very difficult. We invite friends for coffee or tea and cake and I try to get out and develop my own interests when I can.
We no longer have a Parkinson's Nurse in our area. A regular visit from her was so useful and she was a great source of information. Please can we have a replacement PD Nurse!