Family Matters

[Stanley]

"It's going to be an exciting few months!" That's one way of putting it! Didn't know you were off booze, you'll have to start smoking a pipe..... I don't feel sorry for you, I feel angry on your behalf because I see someone who is acting in a selfish manner, whatever the cause. You both deserve better than this. I suspect I would be giving him the hard word whether he understood it or not.

[Sue]

Not read this for a bit, how sad for both of you. It brings back memories but non as severe as these stories. Mum was never that angry with her dementia, by the time it really kicked in she was too ill with lymphoma for scenarios such as these. Dad got angry and frustrated in the home but always acknowledged he was better off there. Keep smiling and remember the good times.

[Stanley]

That's what Janet and Peter need Sue, a bit of acknowledgement... It's very unfair that they should be getting flak for doing the best they can but I suppose that's the nature of the beast. I am so grateful to my parents for having long lives and swift and quiet ends. I was so lucky!

[LizG]

That's what Janet and Peter need Sue, a bit of acknowledgement... It's very unfair that they should be getting flak for doing the best they can but I suppose that's the nature of the beast. I am so grateful to my parents for having long lives and swift and quiet ends. I was so lucky!

How right you are. But acknowledgement or not you still have to live it day by day.

Whilst it was a shock to loose Dad without notice it is so hard to see Mum going downhill. Lack of dignity springs to mind. Give me Dad's way every time.

[Tizer]

Too right Liz. I hope I drop off my perch one day and miss all the distress and pain to myself and others. A farmer neighbour in his 80s died here about a week ago. A couple of days before, when we passed his house he was out in the vegetable garden tending his plants. The last words we heard from him were "Old age brings a lot of other things with it". He used a stick to walk, was a bit weak physically and was frustrated by his condition but he had all his mental faculties, so I think he was lucky to suddenly depart. Many other people are trapped, kept alive by the miracle of modern medicine but distressed and possibly in pain and wishing they could die quietly. It's no good having a long life if you don't have the health to go with it.

[Stanley]

My daughter was telling me about an old lady she cares for at a local 'home'. She is basically completely knackered, no quality of life at all. She recently had a severe stroke, was rushed into hospital and dragged back from the brink. She is now back in the home worse off than before. Susan was saying that whilst she loved caring for her she couldn't help wondering where the sense was in the system. It's a puzzle......

[Sue]

Exactly Liz. My mum was misunderstood, frightened , and until she went in an excellent home was largely ignored in hospital. She was very ill physically but because of her mental disposition the nurses on the surgical ward did not know how to handle her...not their training you see. I watched her retreat painfully into a desolate and lonely world and eventually die holding dads hand. Dad on the other hand was given the dignity of choice DNS or not. We and he chose the former. He lived long enough to say goodbye to all his close relatives and died peacefully in his sleep on his 95 th birthday. I know what I want.

[Tizer]

You've raised an important point there, Sue, about the training of nurses and carers. Many times when my Dad or Mrs Tiz's parents went into hospital, particularly in an emergency, the nurses weren't able to properly cope with them. Another factor is the failure of the NHS's IT system which results in the hospitals not getting immediate information on the patient from their GP and from other hospitals they've visited, and then not passing on information when they leave.

The latest doctor is a breath of fresh air, very proactive, communicative...and unconventional. A big bloke with tattoos all down his arms, he looks more like a wrestler than a doctor. When we explained about my Dad living in an Extra Care House he asked "Is it one of those places where they charge you extra for a bath?" "Yes", we replied, "He has to pay for the carer's time which is about £20 an hour with a minimum charge of half an hour, so it's £10 a time". His immediate response was: "That's disgusting, making a 96-year-old man pay for a bath!" If ever David Cameron has to go into hospital for major surgery I hope he finds this big tattooed bloke standing over him, wielding a scalpel, and asking whether it's a good idea to charge elderly people for a bath!

[Sue]

When my dad first came home from hospital after mum died and he had had an amputation he was living downstairs with no access to upstairs. It was MONTHS before I found out he was having a sitting down wash in the kitchen by himself. When I asked social services about him having a bath they said it hadn't been asked for in his care plan ! After some degree of pressure it was arranged that he would have a bath when he went to the day care centre he went to. That was before they decided he wasn't eligible for day care anymore( early days he became eligible again later when he was older ). Eventually they fitted a stair lift for him and were persuaded ( if that Is The word ) to provided him with one visit a week from a carer for a bath . No good for dad he started having a bath by himself. Using the electronic seat that lowered him in. I told him not to but his comment was that he liked having a bath.

[Stanley]

Essential but depressing posts.... You lot should have the power to direct policy...... (I like the tatooed doctor....)

[Tizer]

A warning for anyone else out there who might have relatives in a similar situation to the parents we are talking about...
When they have hospital visits (which can be frequent) they are assessed before being `let out' by an occupational therapist (OT, they love acronyms in the NHS) or a person with similar duties. An elderly person, especially if they have an infection or have had an injury, will often give answers to the OT's questions which they think are the `correct' way to answer or are simply wrong and a result of their memory loss or confusion. Now you would expect that OT's and the like are trained to work around this problem but we get the impression that they often accept what the patient says. A example is the patient saying "Yes" to "Do you have anyone at home to look after you" because they don't want carers coming in or simply because they have relatives who see them now and again.

Sometimes you have to check what the OT has asked them and what answers the patient has given. At the moment my Dad is liable to tell them all sorts of tales because he wants to seem independent and able to look after himself, and also because his mind drifts away. When he moved from the big hospital in Taunton this week to the local one he was saying he'd just come from Preston hospital. And he sometimes thinks he's still living in a normal house rather than the Extra Care House flat. The OT's can get a thoroughly garbled description of a patient's home and lifestyle but they are obliged to ask the questions.

[Wendyf]

When I was coping with my Dad's cousin a few years ago it seemed that unless the person in question had been declared to not have capacity for making their own decisions then they had to be believed. It can be an incredibly frustrating and upsetting time until you get an official diagnosis. I sat in a room with a group of professionals questioning Muriel about her life at home and how she coped, listened to her telling them that all was fine and despite my trying to tell them that she wasn't without causing too much distress, the question came "Would you like to go back home, Muriel" answered with yes and I couldn't believe my ears when they said she could! This was after at least two hospital stays and incidents where the police had to attend. Luckily she was put into an emergency care home to get her out of hospital and in the time it took to get a care team in place they realised how bad she was.

[Cathy]

I have always followed this topic and my heart has gone out to all of you. I haven't gone thru what any of you have, my father died when I was 14 and my mother died recently while still living with her second husband. For lots of reasons we never really kept in touch. I have been very lucky/fortunate (I feel awful trying to put a word to it), that I haven't had to go thru looking after an ageing parent, but it seems to me that for those who are in touch and caring of their parents, there should be something in the caring system akin to the power of attorney, in that you have the final say. You should be able to sit down with these so called professionals and explain that you know your parent(s) in much the same way that a parents knows its child. A lot of professionals seem to work from textbooks, when really it comes down to family history, living with each other, past conversations, a child knowing the changes that has happened to its parent(s) etc, and knowing instinctively what is best for the person involved thru the emotional connection.

[Wendyf]

My experience with Muriel might have been exceptional because I wasn't a close relative. There is now a personal POA Cathy.

[Cathy]

From the problems portrayed on here it doesn't look like the POA is recognized.

[Stanley]

Cathy puts her finger right on the problem. The most knowledgeable 'experts' are the people who know the patient best and have been with them all the way on their journey. hey should not be dismissed as amateurs....

[Sue]

In my case dad insisted on doing all the talking but the Social worker always phoned me to ask if I could be at each meeting. The doctor too was very inclusive and was also happy to speak to me without dad present. However the system fell down if they only listened to what dad said as he forgot things, he also just wanted the carers to talk. I have to say he lost care because the carers didn't fill in his daily care log properly ie jim didn't need anything today, or Jim told us not to do anything because his daughter would do it, that way it was all transferred to me and as you know I didn't live locally. Dad didn't trust his carers to do things as he liked. His visits were usually 15 minutes in length and half of that was filling out the care log. The visits were too short to be of value. He eventually had an excellent carer , a mature lady, who took his shopping list home with her and did his shopping with her own , delivering it to him the next day. That way his shopping allocation time could be used for other care needs. Like giving him a bath! She listened carefully to how he liked his bed made and did change the sheets as needed.

[LizG]

I agree with everything that has been said. The problem is that unless a family member is there all the time you can't control anything. We have a POA but that doesn't give you total control. I went to the doctor with my sisters and we insisted that we review Mum's medication. We took her off everything that wasn't necessary to her current requirements. That meant reducing medication from $160+ per month to $6 per month. (She had never taken anything until she broke her hip in November.) Why was she taking it at all?

We got call last night (Saturday) to say they were very pleased that she had put on 75g. There were so many problems with this phone call; apart from the fact that it was Saturday night they also told us they made a mistake last time with their critical incident report, she only weighs 43kg with this last increase!

I'll stop ranting now - sorry.

[Tizer]

Don't apologise Liz! We've seen the prescription problem too. It happens because each `incident' results in another drug being prescribed but no-one takes the responsibility of removing the previous ones from the list. On POA Liz is right, it doesn't give you full control, especially if like us you have the earlier Enduring Power of Attorney (EPA) which gives you `legal authorization to act on someone else's behalf in a legal or business matter' (which essentially meant in property and financial matters) rather than the new Lasting Power of Attorney (LPA). There two types of LPA, one which does the same as an EPA and the other which covers health and welfare. But even if you have both LPAs the care services can over-ride you if they think their decision is in the patient's interest.

Yesterday I think there must have been a change from weekday to weekend staff in terms of who provides meals for my Dad. Either that or someone simply forgot that his dentures are broken. They gave him a standard meal and he told them "I can't f***ing well eat that!" I've never heard him use such 4-letter swear words before, in fact I don't recall him swearing at all. He could be angry and frustrated but he didn't seem to have a need for swearing. It's all to do with the breakdown of inhibitions.

[Stanley]

And perhaps increasing frustration with his condition. No matter what the immediate manifestations of his age are, inside there is still a sentient core which will occasionally break through. Like being imprisoned in a body and a system you hate. This is why the patient should always be regarded as a human being, not a problem. What a minefield.....

[Tizer]

With his confusion over time of day he usually does a lot of sleeping in the daytime and then is wide awake at times during the night. This isn't compatible with the hospital routine with all the various people coming to check him, test him, monitor him etc during the day and the general noise and hubbub of the ward environment. Mind you, he adds to that by repeatedly getting up off what we call his whoopee cushion, the pressure cushion to warn the nurses when he starts wandering! But I have to admit that I'd probably commit the same crime.

[Stanley]

They wouldn't like me getting up at 03:30 onwards and sleeping two hours in the afternoon then......

[Tizer]

Trouble at the mill...
We knew that two women were going to visit my dad yesterday afternoon to assess his needs for care and this would decide what sort of home he would go into. They were going to do it last week but he had a urinary infection and this would invalidate their assessment. One woman is concerned with the financial aspects and the other with mental assessment. I got an email from them this morning saying that when they arrived my dad was sedated and therefore, again, they couldn't do the assessment and will have to do it next week.

I wondered why he was sedated, whether he was being even more difficult and rang the hospital to find out. In a long informative chat with the staff nurse she told me that sedated was not an appropriate description. They were now giving him the lowest tablet dose of diazepam tranquillizer to help him cope better with the hospital environment, he was wide awake, had been watching TV and seemed quite content. This satisfied me - the 2mg twice a day of diazepam wouldn't have much noticeable effect other than calming him, so I'm definitely in favour of it. He'll be a happier man and I hope they do the same for me when the time comes.

A little while later I got a call from dad's doctor (the `tattooed wrestler', as I describe him) and he was not a happy man. First of all he didn't like the two `assessors' using the word sedated. He said they hadn't needed to `sedate' my dad and he didn't like the procedure anyway. Secondly, when the two women visited my dad he hadn't had any tranquillizer; he had decided dad no longer needed the afternoon tablet. And thirdly, regardless of saying they couldn't assess him they have filed an assessment and he read out to me their decision: to put him in a standard nursing home. Fortunately this is what we and the doctor wanted. He doesn't need the more drastic dementia care.

So the outcome looks likely to be what we believe he needs. But the doctor is now on the warpath and wants to find out why the two assessors told me they hadn't assessed dad yet. We suspect they might be delaying the process and that irks the doctor - NHS staff are currently up in arms about care services not being capable of sorting out proper care arrangements for elderly people waiting to leave hospital.

On top of all this is another problem. After seeing my father yesterday the assessor concerned with mental health decided that dad had `an urgency to go to the toilet' and should be sent to the main hospital for a bladder scan. The doctor has said "I make the medical decisions here and the patient has nothing wrong with his bladder and doesn't need a scan". We have little confidence in the woman concerned and it doesn't surprise me that she's wound up the nurses and doctor - she did the same on her visits to the care home. It looks like there's going to be trouble at the mill!

[Stanley]

Oh God! We have a problem here! I have little doubt that she thinks she is right! I like the tattooed doc, he's quite right, leave the clinical decisions to him! You and J don't need this, Broad shoulders Mr Barnes!

[LizG]

Trouble at the mill...

I'm so sorry to hear that things haven't improved in your life. It does your head in trying to cope with the stupidity that goes on as well as worrying about your Dad. Some advice if I may, take care of yourself too, it's easy to forget with everything else to think about.

Before Mum went into the nursing home she was in hospital and time after time we had to talk to them about her meals. She couldn't choose from the menu because she couldn't read and had lost the ability to make decisions, so they gave her nothing. Eventually I had to get cross with the dietician to make her take notice. She told me that Mum loved the food they gave her. She had no idea that she wasn't eating anything, every time she asked Mum if she liked the food the answer was a resounding 'yes' - she had no idea what they were asking her.