A conversation with a carer and spokesperson for people with dementia 19 July 2022


Ray Johannsen-Chapman (RJC) interview with Barbara Benedek (BB) about her personal views on specialised community based palliative care.BB was a carer for Mick her husband who had dementia.  We would like to thank Barbara for sharing her very moving thorughs and experiences.

RJC: Following our discussion about this engagement review, we briefly spoke beforehand dementia and palliative care, you raised lots of interesting points in the small scale survey. Can we talk here about your experience and what you think we need to take into account?

BB: I feel very strongly about this, what generally happens, is that you're diagnosed, well this is what happens in in Hounslow or under the West London Trust, which is Hounslow, Ealing and Hammersmith and Fulham. As I say, you are diagnosed at some point and that stage, you are gathering new information about your condition. You are not anywhere near terminal and you really don’t want to discuss that part. You don't want to talk about dying, you are in psychological shock.

I mean, we are all going to die, but then you are put on medication or not, and of course you stable. They, the patient/s are discharged to a link worker who checks with them once every six months just to see if they're still alive, basically.

RJC: And was there any change in that six months when your husband was first diagnosed?

BB: No, I mean, he was diagnosed in 2008 and died in 2018. So it's a long, slow process and unless the GP, is on the ball and refers the patient to the carer to specialist palliative care, there's sort of no one. Unless, you demand or know how to seek support.

RJC: So, in your survey you mentioned that the geriatricians were really helpful. How was that?

BB: Well, that's only because I'm a bully and I bullied. I made the dementia service or the GP refer to a geriatrician. That was really important because of the information I received.

RJC: When was he referred to palliative care?

BB: He was referred to palliative care actually by the hospital. But it is true of almost all the carers and patients, there is little help, because dementia is a long, slow illness and the deterioration is slow and some have serious behavioural problems. My husband luckily didn't.

BB: So he had other problems with walking and for example, he went to a Parkinson's class. I persuaded them to take him, so he could do some activities and they were working with play dough, you know, to strengthen hands and everything. But the dementia got in the way of doing many activities.

It is tough, he couldn't put his socks on, and things like that. Slowly, I finally found a carer. I didn’t go through social services I found them to be more trouble than they were worth. I had to personally stop working in in 2011. Then there were lots of things going on with the local Alzheimer's Society. I wanted the best for him, they had activities two or three times a week, and it was great for Mick to try to get involved with the people who went regularly.

BB: In terms of palliative care, you don't think about talking to your GP about these things, or when is the best stage. But, I had a care coordinator at SIDS at the Dementia service.  I don't know whether they still have them, but she was doing cognitive stimulation with Mike. And it was her, who talked to me and I think she actually wrote to the GP, suggesting that Mike should be seen by specialist palliative care, before he fell.  You see, he was too frail to walk. It got so bad, the hospital team were thinking that it might be best to amputate. And I thought, oh my God, I'd never let him go through that. But eventually, when he was discharged from hospital, he got continuing healthcare and we cared for him at home until he died.

RJC: How long for?
BB: Two years.

RJC: When I recently spoke to a dementia group, I asked them questions, in terms of, why do you think referrals to specialised based palliative care are generally low. The ongoing point that people made was because they've cared for their loved one for such a long time, that they know all the nuances. Palliative care felt like an added burden and/or they just didn’t have the information.

BB: There are some clinical things that you and some staff just don’t know, this is where specialist based palliative care becomes really important.  And you know, information about the medications in the house. They talked to me about what to expect. I saw them as there for me. I clearly didn’t want him to go to hospital and neither did he. He hated the hospital, they are loud places and confusing places for someone with dementia.

But getting to your question, I don't know. I mean, people have bad experiences with carers and as they said to you, they just don’t understand about palliative care. But they are right, we do absolutely know the person

You see, the thing is for people with dementia, they can't really tell you about the pain. They don't know when they hurt.

RJC: That must so tricky, what about the TV, could he watch anything like that?

BB: No, there came a time when he stopped being able to watch a TV. He said to me one day, Hey Barbara, I think we'd better call the police. There's a lot of crime around here. He couldn’t differentiate, He was so sweet, though. He really was. He, as person was never difficult. But the dynamic between husband and wife changes. He was still the man I married but the condition changed him.

RJC: That must be so draining?

BB: It's draining, it's absolutely draining. You don't realise how exhausting it is. As I think about your question, I suppose the first thing is, as we said, people don't know about palliative care, no one is really telling them. I constantly looked for information, but we have already said how draining it is. You run out of energy. But secondly, I absolutely take on board that they feel that they don't want anybody else in the house. No one has spoken to them about this before, they have managed, or found ways to manage while under extreme stress. Added support, can seem like extra stress, unless you know what to say and when to ask for it.

So we could change the information support. I think that when people are firstly diagnosed, they don’t want to know about palliative care, but after a period of time there could be a serious discussion about end of life planning. Like, have you done your will? Do you have a power of attorney? Do you want to burial? Do you want to die at home? Are you afraid? What do you want?

RJC: It is a subject that is scary to discuss.

BB: Yes, it is, but at some stage, we have to consider and think about it. We already said, we are going to die. We could have, within the dementia classes, a section on the introduction to end of life. In other words, to help people how to have those difficult conversations. The palliative care centre in Meadow House, where Chloe Hillman works, she's fantastic. You could do a dementia webinar with her, to talk about end of life.

RJC: going forward, that could be really good for Meadow House to be part of the end of life discussions.

BB: That's why it's so tricky with dementia. If you're dealing with cancer or motor neurone disease there's a relatively well known timetable for that. But with Parkinson's and dementia, people live with Parkinson's for over 20 years. I understand that the GPs are now so stretched and so it’s not straightforward for them to talk to us, so other means like Meadow House, could be one of the ways.

I know that the West London dementia service had a way of keeping track of its patients. You know, every 18 months or something, they could have a get together and they could be the places to talk end of life care? Od The Alzheimer’s society who run number of activities maybe someone from specialist based palliative care could do a talk about end of life care.

But that is your real challenge for people with dementia and other diseases like Parkinson's that run for such a long time. How do you find the right moment to start talking about palliative care and end of life care?

I remember Mick had a terrible event and we called the ambulance service, but I refused to let them take him to hospital. And the only way they were allowed not to take him to hospital is because they knew he was under the care of palliative care. So, training and teaching session throughout the journey for carers and for people with dementia.

RJC: Barbara this has been such an enlightening conversation, with wonderful insight from and wonderful suggestions. I also have your other responses which I will feed into the engagement process.

BB: Just to let you we have set up our own Hounslow, End of Life steering group and we have a very active End of Life group, which Chloe used to run. You are welcome to speak to the group.

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