My mother was diagnosed with vascular dementia a few years ago. She’s now an advanced stage dementia patient, who lives with me, in my house. It really is tough going. She needs the toilet 24 hours a day, struggles to walk at times, and can be fairly crabbit when she’s in a bad mood.
My sister in law came to visit today, and was visibly distressed at my mum, who was slightly delirious, and her eyes were not her usual. It’s a look that only people who have cared for someone with dementia will know.
My heart went out to my sister in law, as the realisation hit her, that her strong, independent mother in law, is now child-like in nature, and very very needy and dependent. I accepted that phase of her disease long ago, so for me, the day to day care is similar to raising a child, but harder work.
She has developed a very strong reaction and close relationship with one of her carers, who she sees as a very close friend. To tell the truth, she would probably have him to look after her all the time if it was her choice.
As she’s been ill of late and falling a lot, she’s got a cast on her arm, from when she broke her wrist in a fall, and we have to often use a hoist to move her around, yet she has an incredible determination to get up in the middle of the night, so falls are an inevitable part of dementia, infirmity and trying to be independent and do things for herself.
I need daily help with her. If carers come in and do the morning shift, getting her up and dressed, it means I only have to do the bedtime long routine as they do the morning. I have direct payments, and I also use more than half her pension a month, to provide this cover. Sadly, I need 7 day cover, whereas up to now, the money only covered 5 days a week for getting her dressed.
I approached the agency and asked to change my hours, so I could have daily cover, at least until I can get a reassessment from the council, and perhaps a little more in the way of direct payments money to cover the bills for help. I asked for 2 hour shifts for two days of the week. They’ve refused as they say it’s not a long enough shift. We cannot afford to pay for more than that, for those days, so I have had to go back to 5 days a week for morning cover.
Our care manager says they cannot get council carers to come to us, as although we’re in a City suburb. People don’t want to come here, as it seems there are not enough old people to do a full round. So, I’m left with 2o hours a week, out of 168, that I can afford to buy care, with 2 days having no cover at all. I don’t see how any of this is actually sustainable, considering I have three boys, yet I continue to try and manage it. Carers daily would make a big difference to our lives, yet it’s not going to happen.
She has very little money, so going into a care home would be incredibly expensive for the council. I’m not expecting them to do that.
It’s been a sad week all round here.
Tomorrow, I get up to fight another day for her. I had one of the best mothers in the world, and she deserves that from me.
Wish me luck. I’m going to need it.