So after the ‘We promise we will give you 48 hours to prepare for her coming home’- useful when you are autistic and have ADHD, I got about 12 hours before they delivered her home and got her upstairs into the flat. Then, after a quick run through her medication, they vanished into the mists and we were left alone.
So what’s changed?
- Her medication. It’s a whole new ball game now. New blood thinner, more heart meds, a statin, and out of the blue, a diabetic medication because she had one borderline Hba1c reading. Thankfully I had a weekly organiser all lined up so in they all went.
- Adaptations. Her walker is a bit like a battering ram, and I am the medieval castle. I’m sure she’s running over my toes deliberately, lol. We also have something to help her off the toilet, a step to help her into bed, and our landlord has agreed that we can have another banister put in to assist her in getting down stairs.
- Carers. All very lovely, and coming in twice a day to help her with her hair and to wash/ shower etc. Karen is living in her Pyjamas at the moment so she doesn’t need dressing or undressing save to change them, and she has me for that. We have them for two weeks before the situation is reviewed.
- Support. The community team rang, said something vague about getting in touch in the future about setting up a visit (though why they couldn’t just arrange that on the phone is a mystery) at some future date, and that aside, nothing at all. Chasing doctors so we can discuss her outstanding medical issues. No calls, not even a message from her children to find out how she’s getting on.
- Day to day. We spend an hour a day just looking at photos, reminding Karen of who people are, their relationship to her, places we’ve visited etc, and also recognising various objects and what they’re used for. We also play games like noughts and crosses, and a ‘magnetic’ game in which you try not to attract magnetic pieces to the ones you place on the board, which she enjoys. She watches a bit of tv, but mainly occupies herself with YouTube videos and catching up on things she has missed.
- Me. I have gone from the person she cared for to caring for her. I clean, cook (very badly) and generally try not to wear myself out (Not easy when your Fibromyalgia is rampant). I encourage her to use her right hand and arm as much as possible, seem to constantly check she’s okay, field any awkward phone calls, make her numerous drinks, and generally try and reassure myself that she’s doing okay. I organise medical staff, deal with the landlord, make phone calls (I’m autistic and hate doing that!), and try to keep the place from falling apart. My diabetic bloods are high, but then my diet just sucks at the moment. I hope it will settle down in time. I also organise home deliveries of food because I can’t leave her alone for any length of time, oh, and I chase the CAB about a visit so we can get her benefit claims up and running, and arrange home deliveries of her medications.
I’ve probably forgotten something- like the car. Like telling her insurance company and the DVLA she’s had a stroke, but since shes not driving and nobody else is using the car, and she wants to drive that car again in the future despite me not being able to drive it, and despite me thinking we need an automatic to help her (and me, because I would drive an automatic!), I just haven’t got round to it. And I am already worn out and nowhere near back to ‘normal’ after 10 weeks in hotels.
So yes, a lot has changed, and I’m sure it will change again.
. Take things easy for a while, don’t try to do too much too soon. As things progress and Karen gets settled at home, things will slowly improve and you will feel more confident. My husband slowly increased the amount of time that he left me home alone and he now goes to work 3 days a week and we both enjoy the time apart.