Walk a Mile in... Lynne's Shoes
Lynne has a background in care work but also looks after her mother who has advanced Alzheimer's Disease. Listen to the heartbreaking story of how the disease has affected the whole family and how Lynne manages to find salvation from her caring role through music and singing.
Listen to Lynne's story and hear what it's like to walk a mile in her shoes.
"2 years ago it was an absolutely horrible year, it started in the May, Mum, who was our primary concern if you like. There is four of us three daughter and a son and my mum, but there was only the three girls because my brother doesn’t live round here, he lives in Lincoln.
"It was May, mum had got this horrendous cough, my youngest sister had got this horrendous cough it was like a virus that was going around. Mum ended up having three months of antibiotics, going on a drip, all sorts of things, she was really poorly. She was frail as well, she was 88 at the time and obviously already in late stage of Alzheimer’s she was really, really poorly. We thought three times we nearly lost her, the doctor kept coming out saying she might not make it.
"So Marie, my youngest sister, she was still in the caring situation with me and my other sister. She wasn’t doing the sleep ins because she couldn’t because she was a single parent, so she had got responsibilities at home, but she went to mum’s every single solitary day, she did the shopping and she dealt with the money all sorts of things. She was still as much involved as we were and had this cough, she was tired, she was low, she had lumps come up in her throat, she went to the doctors and they said ‘it’s this virus, its all the coughing that you’re doing’. Anyway to cut a long story short mum survived, mum is 90 next month. My sister died, she died very quickly, she’d got secondary cancer, so come September she died. So that was May, June, July, August. She started chemotherapy, I think she had about 10 days of chemo and just died. That was a cancer diagnosis and it was sort of over and done within 3 months, it was very short. She didn’t suffer at all. She was on pain relief. She was quite low when she was told about it, very, very low. She did lots and lots and lots of crying but she also had lots of support from friends, family around her daughter.
"So what I am saying is that I dread more than anything more than a cancer diagnosis, I dread a dementia diagnosis, because mum's journey.... I mean 10 years ago the signs were there, but she was unaware that anything was wrong and things have sort of emerged. She would ring me up ‘can you come round I’ve done something’ and then you would walk in and she’d put some eggs on to boil and they had exploded and gone all over the kitchen ceiling, that was a mess. And then walked in one day and it smelt of gas and she wasn’t even aware of it. So it’s been all gradual adjustment and stuff, like we got rid of the gas cooker and got her an electric cooker, switched it off at the wall, and she didn’t know where the switch was, so she was safe. Then we got carers in to help with various things. But what the main thrust of what I’m saying is that it’s been a hell of a journey.
"Certainly since she was diagnosed, it’s been really obvious how she has gone downhill. We took her to Cyprus, I think it was about 7 years ago, and you know you don’t live with your mum, you don’t sleep in the same house as your mum and you don’t know how bad she is until you’re actually in a villa with her and she doesn’t know where she is going. It used to hit her about 6/7 o’clock at night and she’d become a completely different person, and we were all, both me and my sister were really gobsmacked. She started to be scared of things like, she would of gone into the swimming pool with us before and she was scared about getting into the pool, we had to both hold her hand to go in and she just wanted to get out, she didn’t want to get any benefit from it or splash around, and there was all those sorts of things.
"But it has been an emotional roller-coaster. Progressively she has lost the ability to look after herself, she’s lost her coordination, she’s lost her judgment, she lost her memory, she’s just lost everything. She doesn’t walk anymore, we have to hoist her everywhere. You’re up one minute and then you’re down the next and its constantly adjusting to her changing needs. Everybody knows it better to be independent but she can’t be independent, that’s the reality of it.
"She gets up about half past 9, 10 o’clock in the morning and is back in bed by 2pm. We leave her in bed and because she gets so distressed when you’re hoisting her, putting the sling on her or rolling her to change her, or washing her in bed. You’re constantly pulling her clothes up and pulling the covers down. She’s not an unpleasant woman, but she finds it really quite challenging, you can tell she gets quite vocal, she’s not able to say ‘stop it I’m fed up of what you’re doing to me’ but that is exactly what her body language, her facial expression is telling you. It’s exactly what her ‘my, my, my, my, my’ is or she starts singing really loudly, well she 'my, my, my’s’, she can’t do the words anymore to Amazing Grace and stuff like that, and you know that she’s not happy with what you are doing.
"She needs reassurance and for you to stop what you are doing, you need to calm her down and see if she can tolerate it again in about half an hour after she’s had a bit of sleep or changed the activity and give her a drink or something. But she really doesn’t want to be touched, to be hoisted, she doesn’t want to be fed, she doesn’t want to be given a drink, she doesn’t want you to turn her, change her or wash her, or roll her, she just wants you to leave her alone.
"And for me as number one daughter, it is very difficult because if I respected what she was telling me in terms of her body language and her behaviour, I would leave her alone. But then I am just leaving her to die really, which is, I think, what she wants and needs because she hasn’t got the mental capacity to do anything for herself at all. This is what I mean about it being an emotional roller coaster because I’ve got to care for this woman, knowing that she can’t do anything for herself and knowing that she doesn’t want my intervention, it’s horrible. It’s a horrible disease.
"Not for her, I know that she is loved and cared for, in fact some of the carers tell me she is over cared for. I dread getting to the position, not the early stages because I think she was pretty unaware, she was going for these memory tests and I think she was forgetting what she was being told anyway. It was me going with her to all the appointments, scans and things, she was a bit scared about that, but it was me who took it all on board when the psychiatrist was telling me that she’s got Alzheimer’s. They don’t tell you what is going to happen in the future because I think, if they did too many people would be scared.
"I suppose comparing it with cancer, and they're reassured not to worry about the pain aspect of it because we will make sure you are pain free, we will manage your pain for you, and you are sort of more managed when it comes down to cancer care. I mean I could be wrong but what I’ve seen from my sister.
"We are told that Alzheimer’s effects everybody differently, everybody. A lot of it is about judgement being affected and that’s why in specialist Alzheimer’s units they have all the flooring the same. But its knowing she needs 24/7 care, it’s the distress, every day on a regular basis she is distressed and she has been distressed of an evening for at least 7 years. When we first started caring for her, in the early stages, she fell and broke her arm and she couldn’t do anything for herself, so we took it in turns to stay with her, and we realised how bad she was dementia wise. I think we left her to it for a bit after that. Even then of an evening she would be, not distressed but in a state, sweating, uncomfortable, sweating one minute and cold the next, cardigan off, cardigan on, dressing gown off, dressing gown on. Packing, wanting to go home all the time. Then, at the time, telling her she was at home, going through this stupid rigmarole, taking her and showing her these are your clothes, this is your furniture, come and have a look in your wardrobe, here’s you jewellery. We made loads and loads of mistakes. It’s intensive, it’s very intensive and very emotional for everybody, including her.
"I don’t want it. I don’t want it for me and I don’t really want it for her but…
My relationship has broken down, I like alone now. I used to have a partner for 10 years and I was accused of living in an Alzheimer’s bubble, and leaving my partner to care for my mum didn’t go down terribly well. Then just down to me and Jane and we were doing three nights a week each and it was from 4 in the afternoon right through until half past 10 the next morning, three nights a week so that was half your life spent at your mums instead of at home. So it means that I don’t have time, you have to make time to look after yourself, and my stress levels at the minute bad, I’ve had an upset stomach now since last November, I’m really trying to get on top of it, I’m trying to do calming things. But every day I go to my mum’s and I am met with her distress, which is sort of heart breaking, to see that on a daily basis, that is the difficult thing for me.
"I said earlier it’s like an emotional roller-coaster, with your friends you do positive things to keep you sane. I do an awful lot; I sing, I dance, I go to keep fit twice a week, I try to keep myself healthy.
"Today is my day off and trying to sort myself some decent healthy food out, so I’m eating at least properly, but it takes you so long to get around stuff. I feel devastated, I alternate between feeling buoyed up because I’m in a ukulele band as well, I’m in a choir, singing has been my salvation. It makes all the devastations, the stress with mum and being a care co-ordinator and people going off sick or people leaving and the agency not being able to support you, and dealing with mums ill health, doctors, district nurses coming, coordinating that, that’s the stress inducing side of it.
"And the other side is the joyous stuff, the uplifting stuff and for two hours on a Monday night I don’t even think about mum I switch my phone of, knowing she is looked after and it will wait. I actually need that you know, it drags you down seeing someone distressed who you care about is pretty devastating, it hurts and you feel powerless because you can’t do anything about it other than sit and sing to her. There’s a few songs that get us through “It’s a Lovely Day Tomorrow” “You are my Sunshine” “Amazing Grace” “You’ll Never Walk Alone” and very often I will sit with her, holding her hand she is distressed she’s “my, my, my-ing” and she scowls and you can tell she definitely not happy and she uncomfortable, you’ve tried to meet all her comfort needs so it’s obviously in the brain or somethings doing it to her, so we sit, hold her hand and you start singing and she will join in, you are half a bar in and she will join, she doesn’t do the words like she used to but she gets the tune right every damn time and the only joy in this is that music is the only thing that Alzheimer’s hasn’t killed, its killed everything else, it killed all her brain cells, its killed her mobility, its killed her independence, its killed her choices, its killed her joie-de-vivre but it can’t get the music.