Walk a Mile in... Dave's Shoes
Dave, 56, works at Shirevale Resource centre in Shirebrook but outside work he and his siblings team up to care for their mum, Betty who has Parkinson's disease. Listen to Dave's story of how his deep love for his mum, and support from colleagues at work, helps him to stay positive and tackle his role with a smile.
Listen to Dave's story and find out what it's like to walk a mile in his shoes
"I work 5 days a week full time and when I finish work at 4 o’clock every day of the week, I go down to my mum’s, who was diagnosed about 6 or 7 years back with Parkinson’s. She sits in an electric chair and she’s not allowed to go to the toilet by herself because she recently fell and broke her hip.
"My mum is a very private person and always has been, not a people mixer, not a person that will say I love you or anything like that, she does say thank you now and again, that’s one thing isn’t it. But I go down and make her a drink and toilet her every day, she gets toileted every day, it’s one thing in my mums life suddenly since she’s been poorly, she likes to talk about her toilet episodes, her bowels and if she’s not been, she thinks she’s got to go to the toilet every day and it’s an issue. It’s strange but it is in her mind, she focuses on it, sitting in that chair all day she must focus on little things and menial things. I try to say don’t worry about that mum you can’t do anything about it. The other day she said to me something like ‘how do I get muddled up’, I said ‘look mum you’ve got seven kids, you’ve got carers coming in four times a day, you’re sat here, you don’t go out the house’, I said ‘you’re bound to get confused what day it is, who’s been, things like that.
"Stories, she will get upset when she starts telling you a story and she forgets, she does forget my mum with Parkinson’s, definite, she can’t finish conversations off, she can’t even remember what she has started talking about in the first place.
"My mum is lucky because of the seven, there’s seven of us in the family, kids, four are very heavily involved with her. I used to go down seven days a week now I go down six days a week. I have persuaded my brother to go down on a Saturday to do her tea. I go Sunday to make her tea around about 3 to quarter past, and she is a very slow eater and I could be there an hour. Also Sunday’s I make my mum’s dinner, and she is old fashioned and she likes her dinner at about quarter to 12, 12 o’clock, so on them days we can’t do any shopping, me and my wife can’t do any shopping or go anywhere, because the dinner has got to be done and I have to take the dinner down for quarter to 12, give her the dinner and that can be a long process again. She used to sit at the table but she can no longer walk to the table now, so she has a tray in front of her. By the time I have left then at quarter to 1 to 1 o’clock, I am down again at 3 to quarter past for her tea.
"I feel, not duty, but probably old fashioned, I want to look after my mum. She can talk to me about anything and she does. I’ve got three brothers that don’t want to know about my mum’s toileting and couldn’t even help her in the toilet. If my mum wants assistance in the toilet I can go and help her and I have no problem with it.
"My sister is heavily involved and my two brothers, I do get a lot of phone calls from them and we talk to each other about it. My mum’s problem is, illness is, my brother can go an hour before me and my mum be poorly, like it has several times this week, where she can’t even stand up with the Zimmer frame and get to the toilet and I can go an hour later and she can be fine. I can get her to the toilet, one person can get her to the toilet. But like this week we have had about three or four episodes where she, I don’t know whether it is the heat or what, but she struggled. My brother rang me to say my mums like this, she hasn’t eaten much, hasn’t drunk much. And then I’ve gone and she’s had a drink with me and I’ve got her to the toilet. My brother has gone one and a half hours later and it’s taken him and his wife to get her up out of the chair to get to the toilet safely. So that my mum’s condition, so varied, it’s scary.
She’s had a lot, I’d say three or four, hospital admissions in the last year due to bowel problems, blockages and impacted and things like that, that’s my mums main problem. Severe, in agony.
"I think it’s you get into a routine and it’s not your duty but I don’t mind doing it but. You get phone calls to say ‘can you come down I need to go to the toilet’ or ‘I’ve been sick’ or ‘my bowel have opened’ and you just come and get on with it. But like I say there are four heavily involved so that takes a bit of pressure off me.
I have the Saturday off and it’s very nice that you can plan things. But like last week I was asked to go out by one of my brothers last Sunday, which is my day for going to my mums, so I arranged for my wife to go down. She had no problem with that and they had a good hour and a half chatting as women do and my mum likes things like that. But then again she can get tired, back to it again, the variations in Parkinson’s. The fatigue and things like that, I should say that my mum’s biggest problem, fatigue, even talking to people. You know she had four carers a day, four calls a day by carers, we’ve got a wonderful niece what calls around about 9 o’clock and 12 o’clock. We all do work though, I must stress that, we all do work. So she gets the calls at different times of the day from brothers and sisters, so in that respect it’s good."
What do think is the most difficult thing about it all for you personally, how you feel and want to live your life?
"Seeing my mums life change. My mum used to organise trips for 20 years to go on coach trips, my mum and dad did, but then my dad passed away and my mum carried them on, and she would do three or four coach trips a year. My mum is house bound now and, like I said before, she sits there and worries about little things and things go through the mind. Now she’s planning her funeral; what she wants, singing and how she wants to go out, and cars, how many cars because we are a big family and you know that’s upsetting really, at times.
If you care for anyone with Parkinson’s, Parkinson’s facial expressions and mood and all the actions that everything is slow, and my mum doesn’t show happiness nowadays that’s gone, nothing happy. I think she said something to me the other day, I said ‘are you looking forward to this’ (I cant remember what it was, I’d love to say what it was but I can’t remember) she said ‘I never look forward to anything nowadays’. But no Parkinson’s is not nice, and I see her as not the same person really as I did in that respect.
"So we get the support of carers like we talk to each other, we are always on the phone us four, so that’s the support I get and that’s the only support I need, three others that don’t get involved make you mad at times.
"But then at the end of the day, we don’t want to fall out over it so nothing is said. There are times when you’re moaning to your wife and you know first thing when I see my Mrs at 5 o’clock she will say ‘how’s your mum’, we talk to things about my mum and then we talk about what have you done today and how your day gone at work. You do get times where somebody is going out and you get a phone call saying ‘can you cover this call’ and you know if you’ve got nothing on you say yeah, think nothing of it.
I don’t know I hope she doesn’t suffer, because I think she’s suffered, so I hope she doesn’t suffer that’s all.
"I did CPR on my dad when he passed away, because he passed away with a heart attack, I wouldn’t even think about that with my mum, she’s too fragile, just let her go peacefully, hopefully like I say peacefully.
"To be there for my mum, my sister said ‘she’s never ever going to go into a nursing home’, you know, she would have to go and live with my sister. I think the package she has got at the moment is working but that will change if her Parkinson’s gets worse, which it will progress and get worse I don’t know.
She’s not got a good future my mum hasn’t and as long as I can be there for my mum I will be."
So for someone new to caring, what would your advice be about how to deal with it and handle it?
"Listen to the person, be sympathetic to how they feel and just do your best, do your best, that’s all. Try and switch off and live a life away from caring as best you can."