The daughter of one of our clients has shared her story about how she came to choose live-in care from Christies for her Mother and the impact it has had on her parent’s, and her, life.
My parents have lived in their house for over 65 years and have been married 66 years. Sadly my mother who is about to become 90 was diagnosed with Alzheimer’s 2 and a half years ago. I had seen signs of it several years earlier, my father who is 95 has become increasingly less mobile due to osteoarthritis, though he stubbornly refuses a stair lift!
They had always said they wanted to stay in their own home though unfortunately nowadays mum no longer recognises it as her home.
They had managed reasonably well as I live around the corner and increasingly took on running the house, doing washing, cleaning, meals and shopping etc. I got pop in care for the days I was at work to help with lunch and then again at teatime and also to help my father in and out of the bath.
My mum wasn’t too bad in the mornings, would get them both up, have her bath and get their breakfast, she did nursing in her younger days and had always been super organised and efficient.
It had got harder for my husband and I to go on a holiday, it involved arranging for my brother and his wife to pop in more often along with other good friends and an increase in the pop in care. I would do a daily diary of their menus and arrange a delivery from a supermarket midway, but I was also constantly worried and had to ring most days to check all was well. My Mum would get more and more anxious in the weeks before we went. One holiday we cancelled the night before as my father was struggling with his back and my Mum was in major panic about it all.
As my mum has become increasingly confused she started to get upset and frightened while my dad has his afternoon nap, the carers reported at times she was hard to leave as she thought she was being abandoned.
I decided last Christmas that when we went away in May I would get respite live in care as by that stage I had put a bath lift in for them and it meant I was doing her bath on a daily basis before or after work and to increase the pop in care to accommodate her baths would probably add to her confusion with numerous people in and out all day.
I did a fair bit of online research and looked into Christies and another company but it was Christies who wanted to come out and see them before giving us a quote which seemed far more efficient and fair.
About 4 weeks before our holiday my Mum wandered, only across the road to the pub –it is a busy road and she just started talking to strangers, she was so muddled poor thing, thankfully their neighbour was washing his car and spotted her and called us, I had only left her 20 minutes earlier after doing their lunch.
I realised she needed someone with her when my dad was having his nap upstairs so increased the pop in care to be continuous from lunchtime till early evening on the days I was at work, at the same time I rang Christies to request the live in care to start ASAP and to be ongoing.
It had been my original plan that if the respite care worked well I may have it every 6 weeks or so to give me some respite as it was hard to go out at the weekend unless I got someone in to be with her and after her pub jaunt I spent most of my weekends and days off there, she could be difficult with me at times and as much as I knew I shouldn’t correct her or disagree with her found it hard. I would come home upset and worn out. Even though I know it’s the disease it is upsetting when she tells me she never sees me despite the fact I was spending more time there than at home! I did laugh when she said one morning while I was putting cream on her legs after her bath, ‘So this place, it can’t be NHS’, she would often ask me how many others I had to do!
On Mother’s day I read an article in a Sunday magazine Pru Leith had written about her mum with Alzheimer’s saying how it wasn’t good for a daughter to be the carer and how great it was having good live in care as it meant she had more quality time with her mum and could just be a daughter.
I had to quickly get their spare room decorated get a new bed and get a shower fitted in their dated bathroom, I involved my Mum in shopping for curtains and she even helped me assemble the new bed. I had discussed the fact that they would have live in care and how much better it would be for them but a week before it started she quizzed me on who would help them when I was away and then she went crazy saying she didn’t want anyone there and how terrible I was to just tell her now, of course I had talked about it since we decided at Christmas.
I took the day off work the day the carer arrived, unfortunately she couldn’t get to us before 5pm as she was at a previous client and their next carer was late arriving but she came in and immediately settled in helping me get their tea and get mum in her nightie and mum seemed happy with things.
It has been a huge weight off my shoulders knowing someone is there, I no longer have to do all their meals, I still take mum to the supermarket every week and help out with housework but I can now go out at the weekend and not feel stressed or feel I have to rush home to do a meal or check on them. Most importantly it has taken away the constant worry about them knowing someone is there.
Live in care means they can stay together in their own home where I am near and still pop in several times a day but now I can do crosswords with Mum and have more quality time with them.
She has her moments where she moans she doesn’t need anyone there and at times can be a bit difficult with the carers but they are always calm and seem to handle it well. She does classic ‘sundowning’ and can get weepy and agitated in the late afternoon.
I only wish my mum could realise how lucky she is, my mum in law is in a nursing home as is now immobile following a bad hip fracture, she often doesn’t get washed till 11am and rarely gets a shower! My mum has her lovely bath every morning and help selecting what she wants to wear, has someone to take her for walks, play scrabble with and look at photos with – so amazing.
Even in good smaller care homes she would never have that one to one attention.
I agree with Christies ethos that carers need variety and being with the same client would cause burn out, or drive them crazy, we have a few carers now who rotate and its so easy when someone comes back who has been before as I don’t need to go over things or worry although they all seem to settle in pretty fast.
I have kept the pop in carers to help my father in and out of the bath 3 times a week as mum get stressed at this time and this means someone can be with her while he enjoys a bath.
I am aware I still spend a lot of time with my parents and could step back further but it is hard when you have been used to doing everything and I don’t want them to think I’m not there for them. I have to say I really enjoy having the carers around and feel like they become part of the family. I feel they support me too.
Caring for someone with dementia will try your patience and at times be heartbreaking but keep a sense of humour and enjoy the good bits, I can still laugh with Mum and I put on music and dance around the living room with her.
In amidst the muddle are always lucid moments. It must be so frightening for her not to recognise anyone or anywhere so I try to reassure her that she is loved and is safe.
I think if we hadn’t moved to live in care when we did we would have had a crisis with her wandering and feel we didn’t do it a minute too soon.