Walk a Mile in... Carole's Shoes
Carole has been supporting her mum who has Alzheimer’s for over 20 years. These days, her mum, aged 93, lives in a residential care home but, as Carole explains, making sure her mum is well cared for, safe and happy as possible is still a big part of her life.
Listen to her story of how her mum has inspired her, and how her condition has taught Carole to live for the present day.
Listen to Carole's story to hear what it's like to walk a mile in her shoes. Or you can read her story below.
"I was caring for my mother who has dementia, it started, with her dementia, it started a long time ago, we thing probably about 25 years ago. In 2000 she started to show signs that she wasn’t coping well with life, things were a bit difficult for her and her character was starting to change. It wasn’t until 2006 when she got her diagnosis of dementia which turned out to be Alzheimer’s. My father was her primary carer and I would help out wherever I could and wherever I was allowed because it’s quite intrusive to a couple’s life, even if it is their daughter, ‘yes you should be doing this’ and ‘can I help with this’.
"It wasn’t until my father died nearly 11 years ago that I realised just how bad my mum was and I actually found out that my father had opened up to my husband, about 2 months before my dad died, that just how bad my mum was and how disruptive she’d been, how violent she’d been which wasn’t her true nature at all. She was a really loving person, she idolised my father, but she lashed out at him, she wrecked their bungalow one day and my father had kept all of this from me and didn’t want me to find out.
"When he died all the caring came onto me, so I put aside my grief for my father because I had to look after my mum, she couldn’t be left on her own too long. Having said that she lived in their house for nearly 2 years after he died, she wouldn’t allow me to go and live with her and she wouldn’t come and live with us. But every day I would go along and see her and be with her, and every day was the same; going down to the cemetery to see where my dad was buried and we’d sit there for hours and she wouldn’t entertain anything else. Sometimes we would go and do a bit of shopping but we would always have to go to the cemetery.
"So that’s nearly two years of doing that and also taking a lot of physical, emotional and verbal abuse from my mum which was very difficult for me because she had always been a very loving person and very caring, and suddenly she became, I have to say it, she became a monster, which was very difficult. But it carried on like that for quite a while and eventually she fell over in the garden one day and fractured her wrist, broke her wrist and fractured her shoulder, and it wasn’t until the following day I found out she had fallen over in the garden after I’d left. So we got her to hospital and she deteriorated quite quickly after that, she ended up going into respite care and from there she went into a home.
"I didn’t really have much choice because she wasn’t strong enough, she wasn’t capable of going back to her home. So, as difficult as it was to admit that she had to go into a home, we had to do it. I justified it to myself by remembering I had told my parents years before that if either of them needed any care if the other one had gone, that I would always make sure they were cared for, and although I couldn’t do the caring myself I make sure she is given the best care and that she is in the right home. And she is.
"So, although she is in a home and being looked after wonderfully by these brilliant people, the caring doesn’t stop for me. I continue being her secretary, her accountant, her solicitor, her social secretary, her health care worker …etc. etc. …. The list goes on and right down at the bottom; daughter. I don’t feel like her daughter anymore, because I haven’t been her daughter for so long because of all these other things that have needed to be done.
"I’m from Sussex originally and when I came up to Buxton six years ago mum had got to the stage where she didn’t remember me at all, so we decided to come up here with my husband and to start life again, mum still lives in Sussex, to see if we could start having a proper married life, because he’s never known a time with me where my mum didn’t have dementia, and he hasn’t known a time when I have not been a carer.
"People with Dementia don’t like being referred to as suffering with it, you can have a good life. And that’s very true for a big number of types of dementia. But there are people, like myself and my mother, who have definitely suffered because of the dementia. My father died before he needed to simply because he couldn’t cope with my mum and the way the dementia had affected her. I’ve had major bouts of depression, suicidal thoughts and in fact my husband stopped me taking myself off to commit suicide once. It’s affected my husband because in the 18 years we have been married we haven’t really had a proper marriage because it’s always my mother and her dementia there in the background. And other members of the family, we have all suffered because of it.
"I know there are people out there that are in a similar situation to the way I was with my mother, who are suffering now and probably don’t come forward because they don’t think they are supposed to be suffering and that it shouldn’t be like this for them. There is help out there, but they do have to ask for it and it’s a huge step to actually ask for help, but they have to or else the carer’s life will suffer terribly. I’ve got all sorts of health issues since this started, when my father was ill I started to have palpitations and I was meant to go to the heart department of the local hospital back in Sussex to get it all checked out, but I never did because I was always looking after my mum. When my heart is ok I’ve got all sorts of other problems I’ve neglected, so physically I’m a bit of a wreck. And that’s all come about because of my mum’s dementia and it shouldn’t have done. There was no one there who said to me don’t suffer, we’ll look after your mum, and you go to the doctors.
"Yes looking after yourself is not neglecting or looking after the person you are caring for. If you’re not there to care for them then who is there.
"Well my husband was brilliant, he was really good, he didn’t really understand what my mother was going through. He didn’t really have a good idea of what the family dynamic was before my mum had dementia but he stuck with it, and there was a number of times I asked him to leave and go and find his own life because he wasn’t having any life with me. So he was brilliant.
"The Alzheimer’s Society were very good and the people I spoke with in Sussex. Their helpline is tremendous, they are second to none. You can phone up with any problem or even just a little niggle or not being able to cope, it doesn’t matter there will be someone on the phone that will talk to you and help you, so I can’t fault them there.
"They also worked out a carers package for me, possible holidays that we could go on or help, but it was a case of me having to make the decision to do that and follow things through, but when you are caring for somebody who is very unpredictable and it takes it out of you, it’s every day, even when you are at home it’s at night as well listening for the telephone and your worrying about them being at home.
"It’s so difficult to take that step to say ‘yes can you help me with that’ or ‘I’d like to think about that idea of a holiday’. It’s what do I do next.
"There’s always room for improvement however good anything is, and with dementia you can’t cater for everything because there are so many different types of dementia and everybody reacts differently and everybody’s family circumstances are different so you can’t see into the future to cover everything.
"There are so many people that are going to be affected in that way that just aren’t coming forward. I know someone whose wife that had a form of dementia and up until she died they had a relatively good experience, there were very tough times for them both, but she could still go out, she could still converse and they could go to the opera. There wasn’t anything like that with my mum, we couldn’t do anything like that it was just a lot of anger and a lot of quick deterioration with my mother. So although there are, people do have, very good experiences it depends on the type of dementia. And Alzheimer’s is the most prevalent one and that’s the one where people will have the most trouble, the most heartbreak.
"I gave up my life, living my life, to look after mum. When she broke her shoulder and her wrist, she was in hospital for rehabilitation and whilst she was there my husband and I could go away for 3 days and celebrate his 50th birthday. We only went to Winchester which isn’t far from where home is so that if anything came up I could get home pretty quickly. But even then that was the only time that we had away, but I knew she was being looked after so that was ok. But yes life gets put on hold.
"I have had some good times with mum and we have laughed, but it’s not the same as having my mother there. The woman that I remember, who used to be my best friend.
"I’ve learnt a lot, an awful lot from my mum over the years and she continues to teach me, to inspire me. She’s 93 years old now. She has got through a very angry period of about 4 years where she would just fight with everybody and throw her Zimmer frame at them or lash out and punch them. It didn’t matter if it was family, friends, other people living at the home. The home did brilliantly coping with her and she has now come through to a very calm and contented time of her life, all without the aids of any, what they term chemical cosh, so medication that knocks her out, there’s none of that in fact they have weaned her off some of the harder tablets that she was on and she’s a very content woman. She has taught me the importance of living in the now, living in the present day."