*Audio Interview THE LONG GOODBYE * Transcript Download Here
Hi, my name is Madeline from Carelocal Magazine, what you’re about to hear is an audio interview with Adrian, whose parents both suffer from Dementia. We’re going to hear his story and how it affected him and his parents.
M: First of all, introduce yourself Adrian.
A: I’m Adrian, Adrian . I’m 50 years of age and my Mother is Jean, Jean Lillian and my Dad is Phillip Roy. My Mum’s 80 and my Dad’s 89, both with dementia. Two types of Dementia.
M: Tell us more about your parents’ conditions.
A: My Mother’s is frontal node brain so she has no mood swings, she’s mute in a sense, she won’t speak until spoken to.
M: How did you react to the news?
A: At first, a blessing. She never used to shut up, but afterwards I noticed it. I first noticed Mom and Dad falling off a cliff when I took them for lunch at with my daughter, and no sooner had we arrived than my Mom said “Have we had a pudding?” Length of time had no meaning…
M: Right, ok…
A: Like the Goldfish syndrome, so she had no recollection of memory, of time. So we’ve only just sat down, so as a family joke started we had a pudding, you know…
M: Yes, yes, yes…
A: And I thought somethings not right but because you see them every day, that was when I was living here at the time, it sort of creeps up on you. Then I always used to supply my Dad with a car, always have done, always would have done, and I said to Dad, “Nip to the supermarket with mum and get some bits and bobs,” because I noticed she was buying a lot of pineapples. One of the clues was that Mom never used to like pineapples, so she’d forgotten she didn’t like them.
M: So she’d actually forgotten she didn’t like that particular item? And your dad?
A: So Dad, we got to the roundabout, we used to call it the roundabout, he said “I’m glad you’re with me today.” I said “Why is that?” He said “I always forget what to do at this point.” I said “This is where you get out Dad and I’ll show you,” that was the last time I let him drive. That’s when it all kicked off.
A: Within 6 months, alarm bells rang with Mum because I dropped Mum into town outside at the old part, where the Post Office used to be, I remember dropping her off and giving her a kiss on the cheek and she looked at me, it was a very distant look as if to say “Where am I?” She wanted to go into town to buy Dad some aftershave for his birthday.
M: Where she’d been born, bred, all the time, all of a sudden no recognition?
A: She managed to find her way back to the bus depot, got on the bus and went straight back home.
M: Right, ok… So she was concerned herself?
A: I then spoke to her sister, my Aunty Pat. I said “Pat, can you just be a little more visual,” because I get a phone call from Mum saying “I can’t get the lights to work.” They weren’t switching them on properly.
M: Those everyday tasks, the things you don’t think about, you automatically do these things…
A: Then I noticed around then that it wasn’t as tidy as it used to be because my Dad’s very pedantic.
M: Personal hygiene had changed, just habits were changing?
A: Getting old, a 5% slip but he was still active. He cut the grass, still washing the car before I took it off him, so I then spoke to my Aunty Pat and we called the Memory Clinic. I’d never heard of the Memory Clinic.
M: No I’ve never heard of the Memory Clinic, tell me more.
A: So she told me one of her neighbours has an NHS resource called the Memory Clinic.
M: Wow, that’s fantastic!
A: Now what they do, they come out to the house, they recommend 4–5 close family/friends and she just sits there, and we all sit in a circle, have a cup and Mom thought “What’s this all about? It’s all a bit of fun.” “It’s for you Mom, we’ve just got to make sure if you’re poorly we can deal with it.” She wouldn’t talk to anybody else but me about it, I think because Dad’s dementia is psychosis dementia.
M: Right. So we have 2 different types here.
A: The lady sits there and she starts off with
“What’s your favourite TV programme?”
“Can you remember last night’s episode?”
“No, no. I can tell you what happened at Christmas though.”
“Ok,” and then she did, chapter and verse.
M: It’s the beginning?
A: She explained what the brain with dementia’s like, in a big filing cabinet, here we are today so I’ve just filed what I’ve done today there and it’s fallen straight through.
M: And that’s just gone, everything that’s filed years before, that’s all there. That’s a great way of describing it actually.
A: So my Mom, at this moment in time, is asking for a school uniform. My Dad’s already past that.
M: How did you feel?
A: Well it’s a gradual thing, that’s why I’ve called it the long goodbye. So let me go back to the memory thing. She couldn’t do that, and the biggest thing they do is the single, most foolproof test: They give whoever it is being tested a blank piece of paper, a pen, draw a circle. Now draw 3 O’clock. Couldn’t do 3 O’clock
M: Couldn’t do 3 O’clock?
A: So then it’s all about is it dementia 1 or dementia 5.
M: What’s the difference?
A: Dementia 1 is the beginning, once you’re at 5 that’s it. You’re not going to get any worse. Medication will help, what I don’t know, never understood the meds that my Mom takes, mainly for cholesterol and blood pressure. As far as treating her memory it’s gone, because it’s the size of an orange, it’s gone, can’t be replaced. So if someone lost their arm you’d go “Oh dear!” But because they’ve lost part of their brain you can’t see it.
M: You can’t see it so this could have been happening over a period of time, it’s slow, not actually been aware as you say.
*A: *It’s been happening for a good 5–8 years. What I said to the lady when I sat there “Any chance of testing my Dad? I think he’s worse than my Mom.” She went “That’s very unusual.”
M: Yeah I’ve never heard of two parents before.
A: So she said ok and my Dad said “Don’t be so bloody stupid,” got all upright. I said “Dad, you got nothing to lose have you?” Same problem. And that was it so it was “So what do we do now?” “Well we’ll invite your Mom and Dad into the Memory Clinic and we’ll go through some questions and some more tests and then we’ll write to them.” I said “Why write to them? They can’t remember anything; they don’t even open their post now.”
M: Oh gosh that is hard… So everything that had to come through you, as their son, as their carer, taking that responsibility, but someone had to nominate themselves almost didn’t they?
A: So I was aware of dementia because of the ‘care wizard’ thing we’d been working on prior, I understood the concept of what happens to people with it. So I went into Mr Fix It mode. I said “Andrew, Gary, I’m going to get Power of Attorney on Mom and Dad’s estate. Gary you’ve got no chance of being involved because you can’t be trusted. My eldest brother and my Aunty Pat, we need to do it now before we get into crisis mode.” Really important if you’re going to emphasize what people do fairly quickly. Don’t wait. First sniff of a sign, get Power of Attorney’s in place. Health & Wealth. Once you’re in crisis mode you can’t communicate with them.
M: And what does that mean? Power of Attorney?
A:: I carry their credit cards, I’ve got all their money, they can’t touch their own money, they’re not responsible enough. And I go in and make medical decisions when they go for tests in the sense of “Is that an operable problem?” or “Is that not a problem?” or “I don’t want them to have that medication.” Do not resuscitate.
M: So you’ve got all of that?
A: Yes, and its key to their quality of life, people with dementia still have a life, be it not a very good one, but the’re entitled to quality. I fought tooth and nail for both Mom & Dad for that. Now I then instantly made the decision to rent their bungalow out because they were not safe. I spoke to the lady in the village shop next door, Mom & Dad have lived in the same house for over 50 years.
M: So they’re part of the community…
A: And they all knew Dad as very stiff, pristine and upright and he’s in the shop in his dressing gown. So it all comes out after that, dark, not locking doors at night. Got to get them out of there.
M: That makes perfect sense…
*A: *We then applied to Social Services for an attendance allowance, about £80 per week each.
M: Did they get assessed?
A: Yes, the doctor and the Memory Clinic work side by side, so the Memory Clinic then send them off for a doctor’s examination, and all this took about 3 months for the process. You don’t get a certificate but you’re then registered as dementia. So in the meantime I’m then talking to Kingfisher Court Stoneground special unit, it’s a ward and apartments. Brand new. Lovely. Get them in there, the bungalow washes itself. Before we moved them in Dad fell with a water infection because as much as we tried to look after them…
M: It’s the not drinking isn’t it? So they forget to drink, forget to eat that then causes other health issues.
A: It’s not the dementia that kills them, it’s the consequence of having it, so nasty infection, had a stay in hospital, he then gets released back to before we move him to Stoneground, and we had carers coming in at this point looking after Dad. Mom said she could do it, I got blister packs made by the doctors and there’s tablets left here and tablets left there, Dad wasn’t taking them. We had alarm clocks set. It didn’t work.
M: It’s not viable is it?
A: There’s so much paraphernalia out there for reminding people, alarm sets, but the alarms are ringing. “What’s it ringing for?” I’ll have an alarm clock with her then something comes across the tellie, take your tablets “Ok, what tablets?” At 2 years of age would you give an alarm clock and a 2-year-old child a bag of tablets?
M: No. It’s a lot of responsibility, there is the safety issue.
A: That’s right, the gas fires been dismantled, the oven got disconnected.
M: And they’re very vulnerable to people knocking on the door. I know when my Grandmother started with the beginnings of dementia and she thought a care assistant was coming to the door, or it was a care assistant. She opened the door and in fact it wasn’t, it was somebody who had actually come in to rob her for want of a better word. And because she was so vulnerable, what with dementia, living on her own and I think very, very vulnerable people in those positions.
M: So what happened?
A: So my Mom stayed in Stanground no problem, Dad then went back into hospital, he was then into hospital because he had a, of all the time my Mom was in Stanground, Dad had 3 nights there, the carers came up and said he’s too poorly. They thing they got at Kingfisher Court was 4 visits a day, 15 minutes a time. Not acceptable. I thought it was a lot more but that’s another story. We thought we were going to lose him over Christmas he was so, so poorly. The doctor said “How’s he been allowed to get this bad?” I said “Stamford only released him a week ago, we can’t neglect him that much in a week. You need to shut the front door and tell me have we got him for a week, a month, whatever?” They said “He might not see through the night.” “Ok I’ll let everybody know.”
A: One half of me wanted him to die, to see someone go from my size, 16 stone, to 9 stone, try and pick him up and he’s “Uuuurgh…” because his psychosis was really, really bad. He was abusive to the black staff, he was lashing out and he was hitting things. I mean he went mad.
M: And that’s because of the disease itself, this is not him as a person before he got the disease, the water infection. This is him due to the disease and, as you said, the water infection as well. So this isn’t the real man he was.”
A: He was this crazed creature so they were giving him meds as a medical gag I think they call it, which calmed him down. Then they couldn’t get on top of his eating so they fed him steroids which had the reverse effect. So he became a crazy man and then they had to, what they call in hospital, 1 to 1 so he couldn’t be left on his own. So he went into a side ward where he was 24/7 1 to 1 because he’d get up and put things in people’s mouths when they were asleep, steal their clothes. I said “Well put him in a strait jacket.” “We can’t.”
M: The cuckoo’s nest comes to mind! I hate to say it but it does!
A: We needed a good laugh because you couldn’t write what he used to say, he’d go “That fucking black bastard out there. He’s only given birth to five black Bentley’s and Rolls Royce’s and Labradors” I said “How do you know they’re cars Dad?” “Cos I smell the petrol.” But it was B.O. It got to the point where old Dad would just roll over and give up, he kept falling, his face was smashed.
M: Oh that’s terrible…
A: But quite a key thing for the readers to understand is if their parents, parent or parents, is in that situation within a hospital do not allow them to be discharged back home.
**A: ** They tried really hard at Peterborough City hospital, they did a very good job looking after him, but he then became fit to go home physically.
A: So I said “There’s no one there, my Mom’s got dementia, she’s in a special unit, where’s he gonna go?
A: Who’s gonna pay for it? I can’t afford it. My older brother’s got nothing, my middle brother’s a recovering alcoholic, and I’m bankrupt so he’s all yours. Ta ta!” So there’s no forwarding address. “Well he can’t stay here forever.” “Well he’s paid his taxes forever,” and I got quite animated. I meant no disrespect but he’s paid his dues, he was in the war, he’s got war wounds to prove it. They then write to me and there’s a crisis meeting with the discharge team. So bearing in mind we’d built quite a nice relationship with them, the nurses, cos Dad was in hospital for about 3 months and sit with the dementia team and the discharge guy, he was alright, a bit suave. I said “Ok, this is very simple, you need to find a solution.”
A: The solution was that he had to go home, there’s nowhere for him. I said “Ok, so on what grounds is he fit for purpose? Let’s get him in and let’s do the 3 O’clock test.”
A: “We’re not interested in his mental stability, our job here is to make him better, he’s eating, walking, sleeping, drinking.” But I said “He’s 1 to 1.” “But he’s not a threat.”
M: Well he’s a threat to himself I would have thought.
A: If he hurts himself it’s A&E ( Accident and Emergency ) that is a problem.
M: Ok so it’s a different department.
A:I t’s just the ward, they’re all under pressure for beds, as you know this is a problem. I said “So the fact that he groped your nurses.” “There’s nothing down in the report.” I said “One second,” I knew the nurse. “Could you come in here please? How many times did my father inappropriately touch you?” And then the woman, the discharge lady said “What’s classed as inappropriate?” I said “If I stretched over and felt your left tit how would you feel?” She said “That would be inappropriate, you’d be with the police wouldn’t you?” I said “So why is it ok for my Dad who you are telling me is fit for purpose? So how much more are we going to talk about this?” I said “Give me the list.”
M: And what was their response?
A: The list was Care Homes, funded by the NHS. The key to it is, if I’d have taken him home, no funding.
M: So all of a sudden this list appeared so to speak. But wasn’t the care home a cheaper option to the NHS anyway?
A: It is but they want it to come out of their budget, so technically my Dad’s still in an NHS bed.
M: Oh right. So it’s just a different bed under a different system.
A: There’s thousands and thousands of beds out there billed by the NHS but the discharge team are on targets. We don’t want your beds and we don’t want to pay for anybody else’s. It’s a business. [19:40] “So my Dad’s costing you 1500 pound a week. Fact. These care homes on this list and it ranged from a BUPA one right next to the hospital all the way down to some pretty nasty ones.”
M: Did you go and view some of these care homes?
A: All of them, the worst one was the only one that could take him, that was at [20:04]. That’s a full on mental institution, strait jackets, and what happened was, I can’t get this picture out of my head…
M: And they want to put you there because you have dementia?
A: Because it’s a psychiatric ward, deals with psychosis. “Oh, he’s got psychosis, he can go into that one.” So when you go on this list, if you look closely at care homes they’ve got initials beside them. Some is special needs. D for dementia. A for Alzheimer’s and so on and so forth. Each care home has its speciality.
M: Each care home has its niche…
A: We looked through 4, they sent someone in to assess “No he’s too difficult for us.” The only one that could take him at that mental state was. Gary went to view it, I was away, he said “I’m not putting Dad there.” I said “We’ve got to.” I said “If we come out of the system he won’t know where he is,” and they dropped him off and put him there and Gary and I went to visit and the first thing we did was gag at the smell, beautiful people, how they could work in it I don’t know, and then we went to find him then there was just this horrible vision of him in a dressing gown that wasn’t his and a nappy on, and he was just crawling along the guard rail trying to find his room. The thing with dementia patients, people with dementia patients have to introduce yourself to them every single time.
M: Right, ok, that’s interesting. Can you share that side of the experience with us, that’s really good advice?
A: You can’t come at them from the side, direct, and if they’re down low, cos people with dementia , their eyes, their focus disappears so they’re more tunnel visioned, cos that part of the brain is corroding, that side. Hearing, you need to come straight at them, to the side you’ll scare them, and every time I have to reintroduce myself to them.
M: Wow that’s really, really good advice to share with our readers.
A: Because noise, just on some of the symptoms that they suffer from, cos I went on that dementia course…
M: Can you tell us a little bit about this dementia course?
A: It’s fascinating, an American lady spent 7–8 years developing it and what they basically did was put you in a room, first of all, the lady who took the course was “You sit. Sit there. Put these in your shoes.” Which were prickly soles you put inside your shoes, put these gloves on, they then put speakers on and these glasses and say “Follow me.” In 30 second intervals Gary goes in the room, this other woman goes in the room and I do. Your headphones are sirens, music, pans crashing, kids crying.”
M: Does everything sound really loud?
A: No because you’ve got these ear things on, it’s really intense, it’s the worst rave you’ve ever been to. The room is pitch black pretty much, you’ve got glasses on which are like sunglasses that are covered in grease, you can’t really see out of them. And you’ve got things in your shoes which hurt when you walk, and you’ve got 3 pairs of gloves on. Then they give you these tasks to do. Simple task, do something useful. I started puffing the cushions up on a couple of chairs, someone would tap me on the shoulder “Go put a shirt on.” So you then go fumbling around in the pitch dark to find a shirt and I said “Is it ok if I take my jacket off first?” No answer. I flapped about for about 10–15 seconds and I thought “I’ve gotta get this shirt on.” So I took my jacket off, tried to put the shirt on, you try and do 2 buttons up…
M: With the thick gloves situation, it would be impossible.
A: I managed 1, and then it was “Sort some socks out,” and on the bed there was this big pile of clothes. Socks, and that’s the end of the test. So then you come out, take off the stuff and they sit you in the room and the same lady comes in and says “Hi, my name’s Emily, nice to meet you all. How was your experience?” Completely different attitude. I was almost in tears cos that’s how I see how my Mom and Dad see the world, and the whole concept of the thing was for you to be there, in their shoes literally for 4 minutes. So the noise was horrendous. The vision was horrendous. The whole thing was to prove to people, it’s designed for carers to understand how to care for people with dementia.
M: Even family members actually you know, because my Dad’s got dementia and I’ve just understood, so you’ve explained that to me, I understand now a little bit more about how difficult it is when people are asking him to do things, things around the house. Not because he doesn’t want to, it’s cos he can’t.
A: If you spent 20 minutes putting on a shirt and you’ve got the buttons the wrong way and the carer comes in and goes “Oh Maddie!” You’ve just spent 20 minutes, you think you’ve done really well, so they’ve been trained to go “Excellent Maddie, well done.”
M: So it’s like positivity rather than negativity.
A: You know, to try and arrange a few socks for you and I it’s a snap of the fingers so it was a massive, massive learning curve and the first thing that I learned was if you don’t introduce yourself to Mom and Dad every time they don’t know who you are, they really don’t know who you are. “Hi Mom it’s Adrian.” “Oh yeah? Have I got 3 sons?” So you go back to something she remembers from many, many years ago, what she called me when I was a child. So when she looks, she turns slowly because she has no vision, dead straight on. Amazing.
M: So this course, is this something anyone can go on? Or can you invite them along?
A: It’s designed for a roadshow for carers, she makes her living out of being employed by for dementia, and it’s to train the staff, and if you, as a family member are there then you can go and have a go. Brilliant.
M: But it is important isn’t it for carers and for family members to understand.
A: It makes life so much easier, you don’t get frustrated, I don’t have to coach my brother Gary. “Remember the course. Remember the experience.” “Yeah I know.” One of the key things was the carers said was “Why didn’t anyone just turn on the light or open the curtains?” “We don’t know if it was allowed.” People with dementia can’t process right or wrong so they don’t do it. “I don’t know, could I? Should I? What am I thinking of? Where am I?”
M: And that goes round and round and then they have these times gaps where time seems to just disappear and it’s almost like re-awakening again and it could be night then for them.
A: Last weekend we got a new carer, a full time carer now and I said “Fill her with water. Drink, drink, drink, drink, drink.”
M: Is she being cared for in her own home now?
A: Yeah, Mom’s always been cared for at home cos she lives with Gary.
M: And she has a carer that comes in what? Full time?
A: She’s there from 10 to 4.
M: And what’s the carers main tasks to do for your Mom?
A: Hygiene, food, stimulation, that’s all she’s there to do.
M: Ideal situation, she stays in her own home, she’s got all the help that she needs, she’s got the confidence.
A: She’s now got the confidence to go on walks to the shop, she’s now started to ask if she’s still married, she can’t remember Dad’s name, she can see the picture “Am I not supposed to go and see him from time to time?” So she’s recognising the photographs. I bought some old aftershaves that Dad used to wear, they’re stimulating, smell is a good one to stimulate memory.
M: Are there any other memory stimulators actually? Because that is quite a good…
A: Kids baby toys, dolls, that’s good, that’ll keep them occupied because that’s a natural instinct and that’s sometimes the great grandmothers. Photographs are really, really good but the people around the people with dementia have to be prepared for repetition.
M: Yeah, so that’s a big part of it… And how do you, every time you see your Mom & Dad you reintroduce yourselves and they know who you are. How did it feel to you when your parents stopped remembering who you are?
A: I never really thought too long and hard about it because I’ve always been preoccupied with their needs, not mine. I think it’ll hit me when they’ve gone, because I’ve not really had the chance like most people get the chance to say goodbye if someone passes away. I’ve often had this conversation, I wish both my parents had got cancer because there’s more support for them and there’s a beginning and an end. My Dad’s physical situation now is that he’s back to 17 stone and he’s a pain in the bum. He’s walking about but he falls over lots so he’s always backwards and forwards to hospital. The difference between care homes and nursing homes for dementia clients is huge for the family.
M: Describe that.
A: A care home is simply a care home, so every time there’s a medical problem, falls, slips, they don’t feel well they have to dial 999.
M: So they’ve got no medical backup?
A: No, and that’s generally why there’s a price difference. Nursing homes, they’ve got nurses who can give food, so basically nursing home/hospice. So when my Dad was in a nursing home it was just rows and rows and rows and rows of people in bed dying. Dad’s in the end banging a pan and saying “I want a cup of tea.” Again, he was misplaced. He didn’t need a nursing home, he needed a care home. What Dad gets now is 24–7, 4 meals a day, showered once a day, bed linen changed every day, he’s in a better place than he’s been in for many, many years as for as his needs go. When I went and saw him a couple of weeks ago, he was sitting in the card room nodded off to sleep, I sat next to him and he woke up and I thought “I’m not gonna introduce myself, I’m just gonna sit,” and he goes “Are you the fucking train driver?” “Um, no. Actually no I’m not.” Well he said “The fucking train drivers late. Bastard.” I went “Oh, ok.” He thought he was in Colchester, he thought he was in the army and he wanted to get back to Norfolk. He says “I’m gonna be late for my Mom’s funeral.” Cos his Mom passed away when he was 15. So I said “Can’t help you with that squire,” and I walked off. Turned around, came back round and said “Hey Dad, how you doing?” “Oh, which one,” I said “It’s Adrian, number 3.” He said “oh hello son, how you doing”
M: What a difference. So it is just that memory recognition then isn’t it?
A: They don’t know who you are again, but you always know people with dementia 5 as they categorize it, it’s that they see things.
M: Is that hallucinations?
A: They just see things in trees or… “Gosh it’s snowy this morning.” “Really Dad?” A lot of snow in that tree and you have to almost patronize him.
M: I guess play the game with them, is that the wrong term to use? Go along with it rather than be confrontational?
A: No, they can’t comprehend that. So if they go “It’s black outside, it’s dark outside,” and it’s sunny you say “Very dark Dad, let me turn a light on.” Cos all you’ll do is aggravate them.
M: And what advice would you give to somebody who recently just discovered that either their husband or their parent has the signs of dementia or Alzheimer’s or memory loss. What would be the first thing you would recommend they go and do straight away?
A: Doctor. And then Memory Clinic. And just keep filling them up with water, because the first thing they forget to do is drink. Drink, drink, drink and let the doctors do the rest. One of the other things started work on, it started from a conversation where they had no concept of time, night or day. They sleep when they’re tired, they tend to sleep after food or meds and then they’ll wake up at 3 in the morning. “I don’t know what time of the day it is.” So they start wandering about because the night staff are in uniform so they’ve started to put them in dressing gowns. “Must still be night time.” Because we talked about if we can have a moon on the telly, because they can’t read the time, they’ve forgotten. And the other thing with dementia if they’re living at home is, if you’ve got the ability to colour code doors and door handles. Red door is toilet. Green door is kitchen. Cos they’ll remember that funnily enough. So these corridors that have been built at, no 2 doors and no 2 walls are the same. So he’s shuffling back, he’s got a bright green door, he can work it out. That’s how much detail they’ve given this dementia.
A: Mom’s room, Gary when he leaves to go to work, is always shut. All the other doors are left open. So Mom knows that’s not my room, that’s the front door, I don’t go to the front door, it’s locked. So she can shuffle along. So with your Dad, if you suddenly moved all your furniture around it might knock him out. And that’s another good tip for people who have someone living at home with dementia.
M: That’s brilliant Adrian, thank you so much for sharing that with us. Would you be happy to come along again and give us an update on your parents? So we can share your journey with you?
M: That’s fantastic. Thank you very much.