Parkinson’s affects people individually
was one of the first statements made to us when my wife was diagnosed.
am mindful to ask the question
Do you have a backup plan should you fall ill and not be able to care for your loved one in the short term?
Difficult….If you have family / friends would they be able or want to help with the type of care you may need?
Paid for professional care seems the way to help,
But this is surly not available for everyone.
Has anyone hit this situation and been forced find an acceptable answer?
Back up plan - social services offer a carers link in Lancashire. They have all the permissions to come in should anything happen to me. They know childrens names, tel no’s etc and can send someone urgent to help look after husband. They ring me annually or I can contact them to talk about hubby’s care needs, offer a friendly voice, and supply me with info about what else they offer carers, courses, meet ups, details of respite etc.
Maybe see if your local council or county council offers the same. If not try your local Parkinson’s group, they have loads of help
Good to hear …We are involved with the local Parkinson’s group
I am cautious to involve others who did not know my wife’s original identity.
But with your experiences I have somewhere to enquire.
It is an important point that is rarely discussed or given much attention and maybe it is something that should be higher up the agenda if we are serious about provision of quality and truly person centred care. It is a fact that as the Parkinson’s progresses the number of disciplines involved in the care of that individual’s may also increase often atca critical point. They only meet the person as someone who has Parkinson’s and don’t really see the person behind the label. I have used this example several times on the forum of when I was on student placement at a day centre I met a lady with severe dementia who was both physically and verbally aggressive, meaningful conversation was limited at best. This lady was for many years the senior buyer at a large department store. She had travelled extensively with her job, was well educated and full personal life. This was difficult to see in the lady I met, but it doesn’t make any less true that she was the sum of all these things. It had a big impact on me and something I’ve never forgotten. In my own work I have always tries to get a sense of the whole person. I had my own personal experience of this when admitted to hospital a few years ago. For reasons that are not relevant here I went right off my feet for a week or so I could hardly move. They asked what care I had at home. I told them truthfully that I lived alone and managed all my needs and that I had privately arranged for a lady to come in 1/7 for 2 hours as I no longer drove and it was the simplest and most cost effective way of getting to appointments or going to places not easily accessed by public transport and that I didn’t know what would happen now as my.current state wasn’t normal and hadn’t happened to me before. It was quite evident that some of the staff had trouble believing what I said because it didn’t match the person they saw in front of them.
I just wondered what anyone else may think about this and if there are any ideas what can be done about it if if is thought to be important. I am considering writing a page or two potted history of myself together with any
Important information such as getting medication on time that I can give in those situations where it may help them know me as more than the person with Parkinson’s that they meet.
I would be most interested to hear any views on this.
It’s probably worth contacting a local Carers’ centre as suggested. You should maybe also request a carer’s assessment from social services. It would be an opportunity to air concerns about emergency care. You are legally entitled to an assessment. The Carers UK website has information about how to request an assessment and has template letters you can use.