Washing and changing - the use of sedation
Hi Vivienne
As the other posters have said, washing and bathing can be extremely challenging especially when the person you care for no longer understands the need to wash. All I can do is tell you what we did and have done with mum (she has had AZ for 12 years now and although has severe AZ is still physically fit) as we have found it really difficult to get any advice on this matter even from our PCT, her consultant psychiatrist and mum's social worker. In the end, as others said you just have to keep trying different approaches. However, it is really important that you keep all services involved and let them know the difficulties you are having so that it can be recorded in your husband's care plan.
When she first started refusing to change her clothes / wash we would just let her go without, interspersed with attempts at getting her to have a bath/ wash as others have described. We used to try and pretend we were getting ready to go out, put music on even 'accidently' spill water on her so that she would change (everything that has been advised previously). All this takes a lot of time, patience and trial and error. Try to remain calm and cheeerful (I know this is easier said than done) and for my mum maintaining eye contact and saying sorry a lot seemed to help. However, what I also found is that even if one method worked one day it didn't necessarily follow that it worked the next day. The one predictable thing about mum's behaviour was her unpredictability...
This was all fine up to a point and when mum's behaviour just became so challenging and non compliant it started to become more of an issue because we had to think about her safety and the safety of those people who were washing her. It was also becoming more critical that we could help her to get her changed and washed as she was becoming incontinent. It was therefore decided that mum should be fairly heavily sedated (20mg of diazapam) and we would have at least 3 people (mum was a nurse so fortunately has a lot of nurse friends) who would the help to wash her. We had the bathroom converted to a wetroom so that we can sit mum on a chair and keep her covered at all times using a towel with velcro. We wash her twice a week in the evening so that we can put her straight to bed and she can sleep off the effects of the valium.
For me, one of the lessons I have learnt is that sedation is a really important part of treating AZ especially when they are going through an extremely agitated phase. Without managed sedation, the whole process of washing would have been dangerous for mum and the carers. We also used what is termed as 'gentle restraint' - this basically meant holding mum's hands to try and stop her hitting us. I have noticed there is very little discussion on the use of sedation and restraint while washing /bathing on any advice sheets but without them mum just would not be washed / changed. I realise that these are extremely sensitive issues which is why all those who care for my mum were always involved in decisions about what to do. The agitated phase does not last forever - mum is now extremely content and takes no sedation now whatsoever even when we wash and change her. It is bitter sweet I suppose in that as the disease gets worse it does actually become easier to care for her. The most difficult phase is the one you are in now. So I suppose my advice would be to use as much sedation as possible and to do the wash at night so that your husband can sleep it off. I really wish that someone would have told us that sooner as, looking back, I think we were all put through a lot of really unecessary distressing situations - as you will get to a point where no amount of cajoling, persuasion diversion tactics will work, all of which all take up a lot of time / energy and emotional distress which quite frankly we could do without when caring for a loved one with this dreadful condition.
Lots of love xxx
~~~~~~~~~ONLY JOKING 
