I looked after my wife Eileen for 3 ½ years at home. She has Alzheimer’s. Towards the end of that time I had a carers assessment and was awarded 2×3 hours paid care for me to get some time for myself.
In some ways 6 hours sounds a lot, but it isn’t actually that much. I had to divide my time between doing things that needed to be done – which isn’t actually respite. Picking up prescriptions, sorting out pads for her etc.
The other part of the time was great. I have two allotments, which had been totally neglected. Growing vegetables is something I’ve been doing for years and I find it a relaxing way to spend a couple of hours. It creates a feeling of wellbeing.
Unfortunately the respite wasn’t very long lived. We’d just got it sorted and everything was going well. Then Eileen fell on the stairs and went into hospital. In May she went into a care home.
Eileen will only eat when I’m helping her. The care home is 14 miles away and I go twice a day, every day. I’m constantly in planning mode – how am I going to fit all of this together. I always promised Eileen that I would look after her at home. I didn’t know any better at the time not foreseeing how the house would need modifying and how it became almost impossible to keep Eileen safe single handed.
I have experienced feelings just like grieving and still am, but I’m probably through the worst. I’m still tearful and feel in limbo.
For quite a long time I felt guilty for having triggered a series of events that meant she ended up in hospital, on an acute ward, not geared up for dementia patients. It was the wrong environment, which the nursing staff acknowledged, in the middle of Covid.
I was looking after her but was worried about her falling. The en suite bathroom was totally inadequate. I had to get in the shower with her and hold onto the doorframe while getting her dressed – it took half an hour or more. She never walked again after those first few days in hospital as it was deemed unsafe by the Occupational Therapists.
The hardest bit now she’s in a care home is the shared responsibility. My perception is, are they really giving her enough to drink? Things like that. I see myself as Eileen’s ambassador. I need to work with the care home, not in a confrontational way.
There might be 20 carers with varying levels of knowledge of Eileen’s condition and needs. From a practical point of view Eileen is looked after by the care home but I feel my job is to be vigilant and make sure she is being looked after well.
I’m out of the house for 7 hours a day visiting Eileen and travelling to and from the care home, but if I am using public transport, or relying on a lift, it can take much, much longer.
The only time I’ve felt really alone is at 1am when Eileen would get up and get dressed and try to head to town. Or the three months when she didn’t know who I was at all. She thought she was being held in a different house. Couldn’t work out why her belongings were here. What do I do? I was worried she would be sectioned. You slog it out on your own.
There was a period of time when I was getting no sleep at all. She was asking me endless questions through the night. I was never clear if it was the dementia or if she was over medicated.
I’m quite an open person – I’ll tell anyone my problems. Because of that I’ve had incredible support from neighbours and friends. It’s been a lifesaver for me.