Writer and award-winning broadcaster Russ Kane was well-known as ‘The Flying Eye, delivering traffic reports on the Capital FM Breakfast Show for 20 years from his ‘funny little blue plane’. Russ tragically lost his wife Sally, aged 43, to cancer in 2004. He also lost his father in 2000 and later had to contend with caring for his mother June, who was diagnosed with Alzheimer’s disease, in her late seventies. June passed away earlier this year after having the condition for 16 years. Russ recently spoke candidly to Dementia Help’s founder Christina Neal about his role as a sole carer for his mum and pulled no punches on the stresses of looking after a loved one with dementia.

What was your Mum like before she had Alzheimer’s?
Oh, she was amazing. She was very, very competent. She was incredibly elegant. She was a brilliant cook. A fantastic hostess. Very funny, very sarcastic. Very together. She was playing golf. She was playing cards. She was going on holiday. She was driving everywhere. She was brilliant. The person she became bore absolutely no resemblance in any shape or form to my Mum. None.

I understand she was caring for your father until he passed away. You mentioned her Alzheimer’s became more apparent after he died.
Yes, my Father’s cancer went on for some considerable time. Then when he died in 2000, she started showing signs, and it was clear by 2002 that she was definitely developing it.

What symptoms did you notice?
Repeating herself and at first, I just put it down to age, stress or just bad memory. Then it just got worse and worse.

Did you manage to persuade her to see her GP?
No, she was incredibly stubborn, so I had to do all sorts of manoeuvring, because I could see that it was clearly getting worse. The next thing was her phoning me all the time. Umpteen times a day. I lost track of how many times and then there was huge confusion over the post. And it was all junk mail. She thought it was real mail. She was sending off cheques left, right and centre. I needed to control all of that. And then the food in the fridge was all out of date yet she had sworn blind she had gone shopping the day before. I think a lot of it I just blocked out because it was so shit, but we had gone several times to a memory clinic and she faked her way through that. She was very smart. And the illness makes you extra crafty. But it was too late. Had they given her Aricept (medication to treat symptoms of mild or moderate dementia) in the beginning it might have given her a better chance of coping.

What else did you have to contend with?
She went away on holiday and left the hairdryer on. It was a hotel-type hairdryer that was permanently connected into the bathroom wall. I went to her flat after a couple of days to check everything was OK and collect the mail and discovered that the hairdryer had been left on. It was red hot. It had been running for days. So I had to literally pull it out of the wall to prevent a serious fire. Then she kept saying her car had been stolen, when of course she had forgotten where she parked it. She drove right through the huge, metal double doors of her garage, maintaining that something had gone wrong. It was just ghastly. The most poignant was when she invited us round for Christmas lunch. I was so looking forward to it. We arrived, and nothing whatsoever had been prepared. Nothing at all. She just sat there telling me ‘not to make a fuss’, totally oblivious to the situation. We ate a few microwaved vegetables that Christmas. It was so sad.

Do you ever wonder how you coped?
I wonder how I managed with my wife dying of cancer when our twin boys were just five. But then my partner came along and was superb. Then watching my father slowly die followed by watching 16 years of my mother go to pieces, so yeah, it’s hard. I think I had to block a lot of it out.

How did you handle the situation when you realised she couldn’t be on her own?
My partner and I started looking for a suitable home and were disgusted by many of them. They were just awful. They smelt of wee and cabbages and they were horrible, despite the fact that the fees cost a fortune every month. And I mean a fortune. Then we found a wonderful home. The problem was she’d had a huge heart attack and that was really her time to go, but because she was so tough, she didn’t, but she was in intensive care for six months.

Did you have anyone else to help with her care?
Yes, my daughter and my partner, both of whom were brilliant. But the majority of it was me as sole carer, 16 years of it being essentially down to me. Once it had progressed, it was absolutely pointless. I considered that I’d lost my mother many years previously, because the woman there wasn’t my mother. God knows who it was, but it wasn’t my mum, because she didn’t know who I was for some years. Had no idea.

What was it like when you went to visit her?
As she had no idea who I was, I only went to visit her to let the staff know there was somebody around God forbid anything happened. The actual visits were useless and pointless. She couldn’t communicate. She talked gibberish. And I think the tragedy was if she had been propelled into thinking she was the Queen of France or something like that and was in a happy state, I could have made my peace with that, but it propelled her into absolute paranoia. She reinvented a life – none of which had ever happened. I had to keep correcting the staff at the various nursing and care homes. For instance, they all thought I had a sister who never visited her mother. I’ve never had a sister. Or indeed brother. She kept asking for her father and her mother. The irony was she hated her father. She hadn’t seen her father since she was 14 years old. She hated him with a vengeance all her life. And yet she went on and on and on about her father. It was just awful.

What sort of care did she receive?
I moved her several times, for a variety of reasons, including, frankly financial. The staff in all of her care homes were magnificent. They were angels. I can’t praise them highly enough. I really can’t. They were lovely and caring and undergoing such difficult circumstances.

I’d forgotten how disturbing it all was actually. I think I buried it along with my mum. I mean this notion that dementia affects your memory and you get a bit forgetful is such rubbish. It’s like being possessed. You don’t know who the person is any more. There’s nothing you can recognise. And you long for just a few seconds of recognition. You yearn for that, so you can come out and say: ‘That was mum’. I mean, you get so desperate for it. She gave me a little smile towards the end and that kept me going for days. That’s as much as you can hope for. I still cling onto that one little smile.

Is there any advice you’d like to offer to other dementia carers?
There’s no advice. It’s awful. There is no upside to it whatsoever. It’s a cruel, vicious disease and it destroys the person and it’s like watching them drown slowly because you can see it happening but you know you’re in denial yourself because it’s your mum or your dad or your brother or your sister. I was really in denial. ‘She’s just getting forgetful’. ‘She’s getting old’. But of course, it wasn’t that at all. And she became a completely different person. There was nothing left of my mum at all.

I feel bad. It’s like I’m taking you somewhere that’s very upsetting.
Well it does do that. It’s like you realise when you start a conversation like this how angry you are. How hurt you are, and you also realise you are putting a plaster on something that really is a vicious, deep wound and it’s never going to heal up. You leave it and think it’s OK. Then the moment you start looking at it, like now, it all comes boiling back to the surface. It’s not good. I didn’t want to see my mother suffer. It was just pointless.

Do you feel there’s enough help and supportfor dementia carers?
No. Absolutely not. Because it’s not sexy (as far as the media is concerned). You can’t get some Z lister celebrity looking all upset as they wander through a village. People don’t want to know about it because it looks horrible. It is horrible.

My mother had no idea of what affect her illness was having on me. If you have got cancer, you understand. You’re feeling terrible. You could be dying. But you’re aware. With dementia, you’re on Mars. You have no idea of what’s going on or the effect it’s having on people.

More information
Russ Kane created and runs ‘The Espresso Bar’, a Facebook group, for men over 40 to share advice and find support for health, welfare, careers and family relationships. He broadcasts weekly on BBC Radio London and in January is launching Men’s Radio Station, designed as an on-line platform for men to openly and honestly discuss a wide-variety of essential life issues. He has written a biography ‘Shout At The Moon’, has his first fiction novel appearing in late 2019 and performs his one-man show ‘Kaned Laughter’ regularly both in the UK and in Los Angeles. You can also find him on Twitter @RussellKane and Facebook.

 

 

 

 

3 COMMENTS

  1. I lost my sister with vascular dementia… I know it is unbelievably awful to see someone you love suffer but sadly we never know how much that is or if sometimes they are aware that you are there….My sister was in a home but I used to talk and read to my her on my visits…. she was still my sister and I still loved her….

  2. Nature gave a way out of the suffering for his mother by the heart attack and modern Medicine did not allow, – ‘in intensive care for six months‘ why? What justified to the staff blocking of the natural demise of someone in a limbo? To have gross Dementia for so many years is unusual and I do wonder how many courses of antibiotics for chest infections, urine infections both common to dementia sufferers, that again prevented the kindness of Nature taking her.
    This is a good example of why these days we must, while still of good mind make a Living Will, and/or make it plain to relatives that no active treatment of acute illness if unable mentally to participate in decisions and no resuscitation.

    • Dear Sadie. I argued with the hospital. When my Mother came out of the ICU after so long she was put in the High Dependency Ward. Clearly, the nurse on duty was not watching her & she tried to get out of bed, forgot she hadn’t walked in months & broke her hip. I didn’t want this suffering to go on, but the hospital said they would SUE ME if I didn’t agree to the new hip operation. We had a furious row at a meeting, but they would not back down. Me vs. a hospital board. It was no contest.

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