Family Matters

[Tizer]

Fortunately the carers who look after him in his care home flat are good, they're trying their best but the problems arise when other services become involved and communication fails. There needs to be somebody with responsibility for making sure that communication, coordination and collaboration are drummed into all those concerned. When I worked in big companies from the 70s to the 90s one of the worst mistakes you could make was the failure to appreciate the importance of those three words. Sadly many of those companies have now lost their way, although you can still see it working in some of the companies featured on TV such as the CrossRail engineers.

My intervention with the surgery seemed to have some effect, and it was reinforced when they realised he might have deep vein thrombosis. I think they now realise they've let Dad down and they're desperately trying to make up for it. He's getting a daily visit from a nurse for injections and is being taken to the hospital on Monday for a scan of his swollen feet. A carer is driving him there, waiting with him and bringing him back.

All this is happening while we are getting to the end of the big building project. We've now got the kitchen back (lovely and warm) and there's a just a few days more work for the builders to do. but the house is still chaotic in places. Just to add to it all we got a phone call about 9.00 last night from the nursing home where Mrs Tiz's parents live. Mum couldn't be roused and the paramedics were there, they were about to take her to hospital and think she's had a stroke, so we had one of those nights were you're not sure whether your parent will still be alive in the morning. The last we heard today (Sunday) is that she's in the same state, so it's a case of wait and see. Mrs Tiz and the nursing home are trying to get her moved back to the home so that if she's going to die it can happen in familiar surroundings, near her husband and with the best care possible. She has supranuclear palsy, can't move by herself, can't speak and is gradually losing the ability to swallow; she's always been a very bright and active woman, hates being disabled and deprived of her dignity and desperately wants it to end as soon as possible. And although it inevitably creates feelings of guilt, we all want it to end too for her sake.

[Stanley]

Dead right about the guilt trip Tiz and I always warn people about it when an aged parent is nearing the end. I've never experienced it myself because I cared for my mother and father up to their deaths but I've seen what it can do to other people. I wish you both a speedy resolution whichever way it goes. You certainly have nothing to reproach yourselves for.

[Sue]

I keep saying that it is the admin systems that are flawed. Everyone is treated like a job number rather than a person, the doctors nurses etc are great but the administration is terrible.

[Tizer]

Thanks Stanley, mum's still the same but the doctors are refusing to let her out because they want to give her `therapy'. They're sending in a speech therapist...even though she can no longer speak. That sounds to me like sending an ophthalmologist to treat a blind man. They're young doctors and nurses who haven't cottoned on to the fact that sometimes a person is yearning to be allowed to die peacefully and without pain, disturbance and distress.

Sue, you've got it in one. Admin? What admin? The carers are normally with mum & dad all day every day but do the doctors and nurses ask for their advice? No.

[Stanley]

See my comments on the Diabetes Programme on another topic. Exactly the same syndrome and it makes you wonder if your mother is seen as a human being or a 'case'. Add in maladministration and bad communications and you end up in Kafka country. Stafford Beers once told me that the essence of communication was 'what is understood'. Understanding seems to be thin on the ground.....

[Tizer]

In the debate about assisted dying we seem to be forgetting that there are many elderly people who have reached the point where they simply want to be allowed to die. They're not looking for someone to give them the deadly pill but just want to be allowed to fade away and escape the pain and distress. Mrs Tiz's mum had reached that stage some time ago when she could still speak and swallow food and drink. The nursing home have been looking after her well but she had a stroke about 10 days ago and was taken to hospital where nobody knows her and she doesn't know them, and she's separated from her husband who also lives in the same nursing home. She's being fed by a drip whereas she could manage some liquid food at the home. We've tried to get her returned to the nursing home so that she can come to the end of her life with dignity and peacefully without distress; the nursing home wants her back for the same reasons. But the hospital staff are holding on to her and won't let her back unless she's fed on a `nasal-gastric tube', which they've tried out but admit they did it wrongly at first. They can't seem to grasp that she is never going to `get better' and instead they want to try out various treatments as if she'd been healthy before the stroke. To us, it seems inhumane to treat someone in this way who can't communicate, can't say "Leave me alone, I've had enough".

[Stanley]

Absolutely right Tiz. Once again she is not being seen as a sentient human being but as a 'case'. I believe that part of this is the staff looking over their shoulders at the medical negligence lawyers hovering there. They fear repercussions and litigation whether this is well founded or not. I made a very similar case to the Diabetes Nurse the other day when I pointed out that the protocols that she is forced to work under seem to posit that 'recovery' and 'improvement' are always possible. I told her that when you get to my age and have a fairly clear view of the world this ethos becomes slightly ludicrous. I am going to die, the final event will be heart failure and I have already made an Advanced Directive and lodged it with my medical records that in a case like this I am not to be dragged back but allowed to slip away. My kids know this as well, I have talked to all of them about death.
When it comes, it will be a welcome release!

[Tizer]

But will the medics take notice of such directives? Mrs Tiz's parents both have `do not resuscitate' and have made their wishes clear to the doctors and nursing home while they were able...but it doesn't seem to work in practice.

[Sue]

I feel for you Tiz. At least when Dad was in hospital in his last days, they said there was nothing more they could do and he returned to the home where he died peacefully in his sleep after two happy days.

[Stanley]

I rather think my daughters will go into 'attack dog' mode when we get there. I pity any medical team that tries to oppose them and they know what my views are.... That's the best I can do.....

[Tizer]

Thanks Sue, that's what we want for Mrs Tiz's mum. The nursing home staff are trying hard to get her back but the hospital is still resisting. They've tried the nasal-gastric feeding tube three times now but mum has pulled it out each time. The medics can't seem to grasp that she wants to be allowed to die.

Stanley, `attack dog' mode is almost essential now. Members of the family have had to persist in chasing doctors and nurses to get information about mum, both physically and on the phone. A lot of the time they fob us off with yes/no answers to questions and nothing more. If you insist then you might get further or they might just tell you they're too busy. One response is "I'm her nurse for the day, so I can't answer questions, I don't have all the details". The most annoying response was two days ago when Mrs Tiz made her daily phone call to enquire about mum, announced herself as the daughter and was told "I can't talk to you about her because I don't know who you are". Mrs Tiz was not amused and pointed out that they've been talking to her for 10 days so why not now? They asked Mrs Tiz her name then went and asked her mum if she had a daughter of that name in Somerset. Mum can't speak and is hardly awake most of the time but they managed to get a nod from her. Then they demanded a password was set up which has to be used by anyone wanting to speak to them about mum. How on Earth have we got into this situation? We're not asking for mum's bank details or any kind of personal information. Why can't anyone enquire after the health of someone else, whether or not they are related to that person? You may remember that I came up against the same problem a week ago when asking about my dad at his GP's surgery. The world is going barmy!

[Stanley]

Thanks for that Tiz. I've copied your last paragraph and I'm going to mail it to my daughters. They had similar problems when Vera was dying....

[Tizer]

After my post Mrs Tiz rang the hospital and - surprise - got a lovely, helpful nurse who didn't ask for a password and provided plenty of information. That's how it should be but you can call at the same time every day and get a different nurse each time.

[Stanley]

I had mail from one of my daughters yesterday after I mailed them to confess I had been spending their inheritance again on the shed. Susan mailed back straight away that I should go for it. She would much rather have me upright in the shed doing interesting things than lying dead behind the door... That's the way to rear 'em!

[Tizer]

Would you believe it! I've just had my Dad's care house manager on the phone to say that his doctor's surgery won't speak to them about his medical details without my permission. They've had no trouble in the past and a few weeks ago it was the other way around - the surgery refused to speak to me but told the carers his details and they had to phone me with them! I've had to ring the surgery and get them to agree to speak to the care home staff. At first they wanted to speak to only one named person. I pointed out they work shifts, have holidays etc and that, like most care homes now, there's a high turnover of staff and finally they reluctantly agreed to talk to any staff member.

[PanBiker]

We went on our annual walk for Dan today. It's two years today since he died. We went up to Bolton Abbey and walked through the woods and by the river and then back to the Cavendish Arms in Embsay for lunch. Carla and Jack were with us as well. A time to think of Dan and also chat about Carla's wedding in December. Mum and daughter planning more of what seems like endless logistics over lunch. It was a nice day for it weather wise and we finished off with a visit down to Ghyll.

[Tizer]

Sounds like a great way to remember Dan.

[LizG]

Sounds like a lovely thing to do for your son Ian. Bolton Abbey was my favourite place to visit when I lived in Barlick.

[PanBiker]

Thanks for the comments, it was one of the places we used to take the kids as they were growing up. Plenty of other places to go as all the kids were brought up to enjoy walking the fells. It's good that Carla and Jack can get the time off work as well. Jacks firm are very good in this respect. Carla is only teaching part time until both her children get into full time education and last year and this the 18th fell on her non working days. We see them all the time of course but it's nice to walk as a family.

[LizG]

After 7 weeks of being in bed Mum got up on Saturday to get herself a new book, fell up the step and broke her hip. She refused to do anything but go back to bed but Dad convinced her the next morning that she needed to go to hospital. She was operated on late yesterday; apparently too frail for a hip replacement they've put a plate in across the break(?).

After not eating much at all for the last 5 or 6 weeks she now weighs about 6.5 stone ringing wet. Hopefully the nursing staff will make sure she is eating properly before she comes home. Probably a while before that happens; could be a sad Christmas this year.

[PanBiker]

Sorry to hear that Liz, any break in an elder person is not good but I hope she can be made comfortable.

[Marilyn]

Worrying news Liz. Hope your Mum starts to rally soon.

And so easily done. I caught myself just in time this morning...we had lots of rain overnight and I didn't realise the little strip of floor tiles between the inside laundry door and the external security screen had collected water. Of course, I stepped right on it and started to go whoosh! Luckily I was able to wedge myself against the door with the full laundry basket of wet washing I had under one arm. No harm done. (Mind you, I can feel a few muscles after gardening yesterday)

[Stanley]

Maz is right, so common. That's why I am always super careful coming down the stairs and on icy pavements... Worst thing is that even when it gets better she will have lost confidence in walking. I hope she gets better soon.

[LizG]

Thank you all. We spoke to the medical staff today and apparently the hip dislocated as she fell and it broke a piece off the bone. The physio was there when I visited today and gave me a list of the exercises she has given her. The motivation will be getting out of hospital.

[Wendyf]

Sorry to hear about your Mum Liz. How is your Dad coping with it all?