Maggie & Donald: Interview 01

Age at interview: 57

Brief Outline:

Maggie gave up work to care full time for Donald. Donald, aged 71 years, a retired civil engineer was diagnosed with a brain tumour. Donald died in November 2009 and Maggie is starting to adjust to a life on her own. She is looking at training for a career change in the future.

Background:

Maggie was married to Donald for 33 years. She has 2 step-children and 5 grandchildren. Maggie was a medical secretary. Ethnic background - White British.

More about me...

The first indication that Donald was not well came when Maggie had a phone call at work from Donald asking her to come home as he was feeling unwell. Maggie thought he may have had a stroke but when she did the tests for stroke it was clear that he had not had a stroke although his speech was slurred. This was very frightening for Donald and Maggie.

The next week when Maggie met Donald to go to their GP, and although he was usually a very good driver, his driving on this day was very erratic and he seemed to be unable to judge distances. The GP referred him to a neurologist and Maggie recognised the form as the cancer form for the local network. Maggie’s knowledge of medical procedures allowed her to understand what was happening and she telephoned her step-children to let them know that Donald may have a brain tumour. They discussed whether to tell Donald or not and it was agreed that as he always liked to be kept informed, Maggie would explain to Donald that he may have a brain tumour.

At hospital Donald had numerous tests known as a ‘stroke work-up’. He also had a Carotid Doppler, an MRI scan, blood tests and many other tests. A follow up appointment was set for 6 months later, which Maggie felt was too far away and she tried unsuccessfully to get the appointment moved forward.

Donald had further episodes of incoherent speech and episodes of confusion which were very worrying for Maggie. The MRI scan showed small vessel disease-cerebral but a talk with the GP was not helpful. Maggie was able to talk to the GPs where she worked to get information about her husband’s condition and any paperwork she might need to complete to get assistance. Maggie found it hard to know what to ask about and felt helpless. It was thought that Donald might have vascular dementia. Maggie turned to the internet for information about vascular dementia.

Donald’s short-term memory started to fail and Maggie pushed him to attend the Memory Clinic. For Maggie it was heart-breaking to see Donald struggle with tasks which he previously found easy, such as programming the video-recorder, or changing the blades on the garden strimmer. Donald felt lost when Maggie was away at work and although Maggie initially arranged a network of friends to come and sit with Donald, or she would take Donald to their homes on her way to work, she decided to stop work to care for him. It was a very stressful period for Maggie, as she adjusted her routines to care for Donald. She felt very alone trying to cope with the changes in Donald.

Donald was admitted to an emergency bed in the hospital after the results of the MRI scan. Donald was confused and distressed by the hospital procedures and as his condition declined Maggie gave emotional support to reassure him. Maggie found it very stressful dealing with the nursing provisions on the ward and felt she was constantly fighting to get the best for Donald, which was very draining. Seeing Donald being so unwell and unlike his old self was very upsetting for Maggie.

Tests revealed that Donald had a high grade very aggressive brain tumour with a life expectancy of weeks rather than months. The family were asked to decide whether they wanted Donald to be resuscitated should he decline further. Maggie and Donald had previously discussed dying and euthanasia so she was aware of his wishes not to be resuscitated. Donald wanted to die, refusing to eat and refusing further treatments; Maggie supported his decisions. It was a great comfort to Maggie that she and Donald had discussed his wishes previously.

When Donald’s condition deteriorated he was placed on palliative care. Maggie stayed with Donald sleeping in his room at the hospital. It was very upsetting for Maggie to see Donald distressed and in pain. Donald died when Maggie had left the room briefly. Maggie and her step-son sat with him for a while.

Maggie was prescribed an anti-depressant while Donald was ill but the side effects were unacceptable, so she stopped taking them after a short period. Maggie had 3 sessions of counselling after Donald’s death, but she did not find it helpful at that time. Maggie found much comfort in the love and support of her family and friends throughout Donald’s illness.
 

Because of her experience as a medical secretary, Maggie recognised that Donald's GP was using a cancer referral form; later the family agreed that he should be told that the doctor suspected cancer.

So the following week he was supposed to see the GP anyway and that morning he was going to work at the bowls club so he drove down and I drove down too. I walked down to meet him afterwards and I got in the car with him and, my husband was the sort of person who could drive anything anywhere. We got in the car. We came out of the bowl’s club, bowl’s club car park and he turned the wrong way, which really threw him. Going round a roundabout, to sort himself out, he nearly hit the gate post. We, eventually, we got to the, we were near the complex where the doctors is and we missed that turning so he turned into the station car park, once again, narrowly missing the entrance. We came back along the road to the mini-roundabout and if I hadn’t shouted he would have hit the person on the left hand side, who fair enough, should have slowed down, but wasn’t giving way. When we got into the car park for the doctors, which is part of the shopping centre next to Halfords there were no spaces so he parked on the zig zags, where which is used for the ambulances and fire engines and I said, “Darling, you can’t park there.” I said, “I tell you what, go in a disabled space and I’ll keep an eye out.” So he pulled into the middle of two disabled spaces and he parked diagonally across them and couldn’t see anything wrong with the way he’d parked.

So went into the doctors and he spoke to her and I explained what had happened and he explained that he was, he didn’t have headaches but he had times when his head didn’t feel right and he just, he just basically didn’t feel himself. And he and I think he was having trouble with distances and things like that.

Anyway, she said that she would refer him to a neurologist. I asked her for a copy of the letter and she said, “No. She was going to do a form. Well, I knew immediately it was the local, it was the cancer form for the local network so I asked her this, using the initials so that Donald wouldn’t twig, and she agreed that’s what it was.

So she, we came home. He immediately fell asleep on the couch in the conservatory and slept for a couple of hours and, in the meantime, I rang my stepdaughter to say, “Look. I think this, think he may have brain tumour.” And I said, “I think perhaps I need to tell him. What do you think?” So we agreed that Donald always liked to know what was going on so when he woke up, I explained, as gently as possible, that this is probably what they were going to test him for and he was all right.
 

Although some of the health professionals advocated radiotherapy to try to prolong Donald's life, he and Maggie chose palliative care only.

I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said… I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should think positively. He should, he might be able to go home. It wasn’t a bad diagnosis.” And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So then I was talking to Donald and sort of trying to look on the bright side but he wasn’t having any of it and, eventually, we saw the neurologist and he said he’d got the histology back and it was a high grade astrocytoma. When I said, how it had it been missed the first time, he said it presented backwards. Normally, apparently, the core comes first and then the shading, the nucleus round it but Donald had present differently and also, astrocytomas are more prevalent in children. So that was why they’d missed it.

So then we had this case conference, and this conversation about, you know, whether he should be allowed to die or whether it had, and I said, “Look. Donald’s had enough.” I said, “And it’s not because he’s depressed and it’s not because he’s cross and he’s not because he’s given up. I said we’ve always said, right from the very beginning both of us that, if it’s inevitable then let’s get it over with.” So the neurologist then acquiesced that Donald would be left alone and to get palliative care in and he could have what he wanted, which is a quiet and reasonably dignified death.
 

When Maggie's husband's mental confusion worsened she realised that he couldn't be left alone, so she handed in her notice at work.

So how did you, because, obviously, you, your world changed.

Yeah.

You took, did you say you took time off work? How did you find dealing with his illness and caring for him?

It, it was very difficult. I mean the fact that he, it soon became obvious that you couldn’t leave him for any length of time on his own because he got very confused. Now, I’ve got a very small kitchen and one day someone had popped in to see him and they couldn’t find the fridge to find the milk and we I gave notice, I gave them three months’ notice at work in September because it was obvious that he was, and they were very grateful that I wasn’t going to go straight away and then about a month into this, I, one day I’d arrange for Donald, someone was going to come and pick him up at eleven and take him to a friend’s house. And as I was leaving he just got so confused that I rang my friend and said, “Look. Can I bring him now?” And when I got into work I said, “Look. I’m sorry. I can’t do this anymore. I’m going to have to finish today. I’m really sorry.”

And once I was here he wasn’t so bad but he would wake up in the middle of the night, there was, he would wake up in the middle of the night and he wouldn’t know where he was. He wouldn’t know how to get out of bed. He wouldn’t know where the bathroom was.
 

Maggie's husband Donald wanted treatment to stop and Maggie was frustrated with a nurse who tried to change their mind. After a team meeting a Liverpool Care Pathway was adopted.

I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said... I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should he should think positively. He should he might be able to go home.” It wasn’t a bad diagnosis. And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So but before we could do this, because the surgical staff were still hanging on to him and weren’t ready to give him up and wanted him to have radiotherapy and they had to ask, Donald had to agree that he didn’t want it. They came and all sat round his bed and asked him the question and the first time they didn’t get the answer they wanted, because he was confused sometimes. So they tried again and this time he was very, very definite he, he said he wanted to finish it and, and so it was agreed that he could be moved to a local hospice but, because once again it was Friday, they couldn’t do anything over the weekend. So they got all the paperwork in place and he was going to go in Monday morning. Then there was a hiccup because one of the oncologists at the hospice had said that Donald didn’t sound as if he was ill enough.

So our neurologist re-presented the case. It was agreed that he would go. Saturday, he was fairly, he was fairly quiet because the palliative, no, palliative care hadn’t taken him on because he was going to go to the hospice, that’s right. But he could have, they were advising about his medication so they’d got the medication a bit better and he, he was fairly quiet and reasonably peaceful, wouldn’t eat or anything. And we had the odd raving, when he was cross with us and he couldn’t understand why he was still there and why weren’t we helping him.

And then Sunday, he wasn’t too bad either. In fact, he was he fell asleep on Sunday and so I left early because he was he was asleep and they were going to give him sleeping tablets so he’d go through the night and then the phone went at about ten to twelve. I was in bed and one of the nurses said that his breathing, he was having difficulty with his breathing and his condition was deteriorating and I said, “Do you want me to come in?” And she said, “Well, I can’t, I can’t say that.” So I said, “Well, okay then. I’ll be in a little while.” So I rang my stepchildren to say that, “I will go myself.” And I was getting ready and at first, the stepson rang me and said, “No, stay there I’m coming to get you.” And then my stepdaughter rang and said she would meet us at the hospital. So we got there and we sat with him all night and his breathing was really label laboured but he did rally round and he got through the night.

Come Monday morning, we were still there. The neurologist’s registrar, new registrar, came to see us and they’d said that he was too ill to move. They could move him but it would be very traumatic so I said, “No, no, let’s not. Let’s just leave him where he is.” So they moved him into a side-ward. Palliative care were alerted. They came to see us. They were really lovely. They put him on something called the Liverpool package, which meant they would stop all unnecessary treatm

Maggie and Donald had discussed assisted deaths in Switzerland before his illness and agreed that they didn't want to 'linger' when their time came; however, Donald deteriorated too quickly to arrange this.

We were still waiting for the biopsy. It was set for the Tuesday. When we got in Tuesday afternoon, it hadn’t happened. Donald was attached to a nebuliser. He had a very, very bad chest infection and there was some problem with his heart rhythms. In fact, they were so worried that they called us in to a side room, the family, my step son was there and I was and my sister-in-law, and they asked us whether or not, in the event of Donald deteriorating, did he want him to be resuscitated. So we said, we’d thought about it, and we said no, we didn’t in view of the brain tumour.

You, you mentioned about your joint decision with Donald not to resuscitate?

Yeah.

Had you discussed that previously? Was that something that you had talked about?

I knew what he, I knew what he would want. We were we were always great Holby City and Casualty watchers and we’d see items on the news and we’d always said that if either of us had anything terminal then we didn’t want to be, we didn’t want to linger.

You mentioned a trip to Switzerland. Had you actually, I know you mentioned it in passing, alluded to the assisted deaths in Switzerland, had there been thoughts about that at the time?

Well, Donald said that, we used to watch Holby City and there was a storyline there and, and he said to me he wanted to go to Switzerland and, in actual fact, if we’d had, if the prognosis hadn’t been so late, if they hadn’t misdiagnosed the tumour, yes, then we would have considered it. Donald probably would have wanted to and I wouldn’t had, well, I say I wouldn’t have had any objection. Obviously, I wanted him to live but if he wasn’t going to live I wanted him to die with dignity. So yes, if we could have done that I would have been prepared to do that and the, and the kids, definitely, were a hundred per cent with me in that. And, in fact, I’m going to make a will I’m going to make a living will so that the same thing doesn’t happen to me.
 

Maggie had just left the room when her husband died

Donald was having difficulty, he was obviously getting fluid on his lungs and he was, they had to drain his lungs a couple of times. That had happened the night before but this time it happened once and the charge nurse came and said there was something they could give him that would stop that, “Was that okay?” So they did that and then he had a peaceful night and at eight o’clock, ten to eight, probably, about ten to eight on the Thursday morning, which is the 19th November, I said to my stepson, “Right. I’m just going to go and get us a decent coffee and move the car.” And he said, “Do you want me to come with you?” I said, “No, no, no. Stay with, with him. You know how difficult he is.”

Well, he must have died as I closed the door and my stepson tried to ring me but the ceilings are so low in that hospital that I couldn’t get a signal. So when I came back, the doctor was sort of round him and my stepson son said to me, he said, “I’m sorry, Maggie. He’s gone.” And I looked at him and I said, “How could you do that to me?” [laughs] The poor, the registrar looked absolutely nonplussed and, and my stepson said, “No, no. It’s okay.” He said, “It’s just, it’s just exactly, [laughs] it’s just exactly what he would have done.” “I’ll teach her to go and get a coffee.” Died when I was out of the room.
 

Hospital staff had not explained to Maggie the procedure for issuing the cause of death certificate and she and her stepson waited unnecessarily in the hospital.

So the doctor said that he would do the paperwork and we assumed he’d be back. So we sat there for an hour and a half. We, we rang my stepdaughter, who was on her way, said, “Don’t come in, darling. Dad’s died. Come here. Come to my house and we’ll be there as soon as we can.” And after about an hour and a half my stepson went to see what was happening and apparently, we could have gone at any time, that we thought we were waiting for the certificate, not the death certificate not the death certificate but the certificate to say that he’d died that we needed to get the registration. But, apparently, they said, “No, the bereavement.” They get they then gave us an hour and a half, they gave me a leaflet about the bereavement office and said that they would be in touch and then we’d have to go back in to get the certificate to take to the registrar and because Donald had died out of [county] we had to go to [town] to register the death.

I’d been home about twenty minutes when the bereavement office rang me to say they had it. So I said, “Well, we’ll have to come in tomorrow and do this.” And that’s what we did. End of story.