There is no doubt that I have to up my game where dealing with decline is concerned. Anyone who sees Maureen on a regular basis comments on the rate of her decline. One of the dangers of being here day after day you don’t always notice the rate of decline: you just adjust to it.
I have possibly got a little better at accepting that decline is inevitable with dementia. On occasions i still kid myself that I can mitigate the damage from the ongoing brain injury. However, I do accept that dementia is controlling Maureen’s presentation. Even though I still gasp at the lack of empathy and compassion on many a day. Where I am falling short is taking account of her limitations in our daily living.
It is time to run this household like a Care Home for residents with dementia. I have to make some fundamental changes if we are to have a life with dementia, rather than a nightmare with the condition. If my current level of exhaustion continues collapse will follow and events will be taken out of my hands.
A visit to Dennis’s Care home on Friday led me to shudder and vow to keep Maureen out of places like that for as long as I am able. Maureen’s uncle looked to have aged ten years since I had seen him a couple of months ago. His only unsolicited comment of: ‘Look at the state of that’ summed it all up in a simple sentence. He is no longer able to hold a conversation but clearly felt unhappy about his new home and the state of his fellow residents. I left his side after a short while: struggling to hold back my tears.
One thing I need to do pretty quickly is to get more help with our daily living. There is little point in getting hung up on a Carers Assessment – that will happen in due course. We need the likes of Chloe in here more than three days a week. My conversation with her on Friday helped me to see a simple way forward. I have to be the Manager of this Care Home: I can no longer do it all by myself; those days have gone. There are areas where delegation is desperately needed so that I can concentrate on other things. Perhaps I need to share my current thinking with the followers of this blog.
There are aspects of Maureen’s support that are better carried out by experts. Chloe has two advantages over me: she is a woman and has considerable experience of cajoling clients with dementia. I need to leave issues connected with clothing and personal care to the likes of Chloe. My role has to be on creating a supportive environment to Maureen’s presentation, I also have to deal with the issue of resentment: the fact that being a Care Partner has taken over my life and there is a simple way forward on that front – pay for what we need.
You get what you pay for in most aspects of life. We have always been sensible with money bailing each other out throughout our time together. Neither of us worry about: ‘Spending the Kids Inheritance’. Our savings will be spent on ensuring a good quality of life for both of us. There is little point in worrying about what we are entitled to from the State when professional staff are on training courses or too busy to deal with such matters. We will buy in what we need and argue for retrospective adjustments in our savings where necessary.
So some good news for all concerned in my family. I will be down to see you soon. We can make that happen by buying in the care that Maureen needs, so she can be looked after in her own home by staff who are well tuned into her needs.
Please Note: I am very early with this post at 6 am for good reason. Some things are missing that need to be found if we are to have a safe day. Also the Sky Blues are on Sky the afternoon and as an avid Coventry City supporter I need to find a venue that will be showing the game These are both important matters for any Manager of a Care Home!
You are doing an amzing job to have Maureen at home with you so don’t be hard on yourself. I like your thinking though, regarding being the manager. I think you should adopt my new job title: Wellbeing coordinator. 🙂
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Thanks Jenny for helping me to clarifying my role and new tile; Wellbeing Coordinator it is.. I am going to use your YouTube idea for a post on LinkedIn.
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