Words that flow...

Words and images - powerful elements of our everyday life. Most of the time we take them for granted, but sometimes something happens to make you aware of how important they are... and how thankful you are to have the opportunity to use or appreciate them. Here lies some of my words and pictures (which are untouched apart from cropping, unless I've said otherwise) - Please add your words to mine, and leave a comment. Thanks for visiting!

17 November 2006

A Voice (transferred from "Sultana Fling"

This is supposed to be a picture of mum.
This is the fifth attempt at loading it, but blogger is just not letting me do it! On the fourth attempt, I had thought, ' how ironic that the picture keeps coming up as a blank - it is how her mind is progressing, and it is how some people see her - as 'nothing', a nobody without a future'. So, I decided that if it came up blank the next time, then I will leave it here as sybolic of how she appears to be to those people who've never experienced having a close relative or friend with this disease.

The reason for this post:

When I was visiting a friend last weekend, she told me that she'd been spending a lot of time in hospital. Her treatment had been (apart from one mean nurse) fine, but she said she'd been concerned for this man who'd had a stroke. He'd been left half-slipped out of his bed. When my friend's partner had pointed it out to the nurses one had said he was just doing it to be a nuisance. Apparently, although he had no body control, he was doing it deliberately!

Well, this reminded me I'd never finished the letter of complaint I'd been writing about my mum's treatment. A treatment not dissimilar to my brother in Law's mother's, before she sadly died (I wonder if the fact they had the same consultant had anything to do with it...?)

My mum was a nurse.

As I was growing up, she was a sister in the local psychiatric home. And she was well loved. A bubbly, friendly and loving person, who didn't simply 'nurse' patients, but became their friend too.

She'd come over from Denmark with a friend, to train here in Britain, where the training was considered to be good - the best!

And now she has Alzheimer's.

Mum's Alzheimer's has been developing for a few years now [ - personally I think I set her off on this track when I moved into her house with four kids!! :-)] But, it was a slow decline, thank goodness (in many ways) and the use of Aricept (NICE - please don't take that away from those who need it!) certainly helped in this. Whilst taking it, it gave her a chance to regain a lot of her faculties she'd already lost - enough to lift the depression that had been descending on her as she saw herself going the way of her mother before her.

After a couple of years of her being able to stay in her own house (thanks to my sister and myself doing the 'caring') she finally came to the point where we could no longer look after her adequately. When we found she'd been out, wandering the streets, one night, and had no memory of it, we worried for her safety and wellbeing, and came to the conclusion she needed more 'supervision'.

We chose a residential home, which was fairly local, so we could visit regularly. It was far from perfect, as her room was on the top floor, and she could never find it, but the urgency of her situation encouraged us to take the place offered. Never having done this before, we weren't totally sure what we were looking for. At the time, it seemed more important to find a place that wasn't too much like a custom-built home, and the old, house-style of this one seemed to suit her.

As she deteriorated, this home was less and less suitable. After a series of incidents, we found a new home, which was designed to home people with mentally deterioration problems. It was perfect. Unfortunatly, not long after moving in, mum had to go into hospital. The litany of bad treatment would better be explained in my unfinished letter...

Dear Sir

In October, my mother had to go into hospital. She is unable to talk up for herself, so I feel that I must speak for her, or the treatment she received will be forgotten. However, I feel it is a matter for complaint. So much so, that I am still angry about the treatment of her two and a half months later.

A little background information:

My mother, has Alzheimer’s and was a resident of A residential home in Pembury, Kent.

She was active, affectionate, and able (with support) to go out to the cinema, for walks, to a café, other excursions etc right up until July 2005.

The only real problem she appeared to have was a dislike for being ‘trapped’ inside, due to having spent her life working and being outside. Unfortunately my sisters and I took our holiday simultaneously, and when we returned our mother was unrecognisable. She had been taken off the drugs that had been working well up until this point, and was heavily sedated. She came to the point where she hadn’t actually slept for a couple of weeks, and when not sedated was ‘disruptive’ to other residents [she managed to open a downstairs window, and lead the other residents out in a 'Great Escape'! - That,I would like to have seen! :-D ] and staff. Eventually it was agreed that it was probably the drug changes that had had such a huge effect, because more and more were being given to counteract the other drugs given – they were totally imbalanced.

Finally she was booked into Pembury Hospital, to be assessed and for her drugs to be refined. She was there for 8 weeks, in which time she was treated wonderfully, and built up a rapport with the staff. They talked to her, spent time with her, helped her without fuss and she was treated with more respect than she had been treated by people for some time. We realised that The first home was no longer appropriate for her, and they themselves were indicating that we should move her to a more secure and dedicated enviroment. So we looked around, and found a home in St Leonards, East Sussex, which was more appropriate for her needs.

In October 2005 she moved out of Pembury Hospital, and into her new home. She was now lively, and knew what was happening to her. She had regained a lot of her ability to communicate, and was able to walk more easily (as she always had been able to do before) and was no longer swinging up and down mood-wise. Obviously, the move to a new home was a bit of an upheaval, but the staff at the home were brilliant, and put every effort possible into settling her in. She was treated like a human being, with respect for the person she was and had been. Her food was good, and she was eating such things as fish and chips and peas, or a roast dinner without need of assistance, and automatically drunk water/ juice when she needed it. She was able to take herself to the bathroom with minimal assistance and washed her hands after… She was basically, within the sheltered enviroment, pretty much self sufficient.

Unfortunately, this only lasted a short while, because 6 days later she had a fall, and banged her head. Then she had a fit, and the hospital were called. By the time they got there, she’d had another fit. This is the point at which I feel my mother’s treatment deteriorated….

Conquest Hospital
On arrival at the hospital: She arrived in A&E, and was given a bed in the assessment unit. When we arrived there, she had been there some time (at least a couple of hours), mostly sleeping off the fit. One of the Staff had come with her from Southdowns, and had remained long after she was supposed to be off duty. She gave us the list of medication, Mum was taking, to give to the doctor. She hadn’t seen a consultant yet. In fact, we had to wait several hours more before anyone came to tell us that someone would come round in a while, and before vital signs were taken. However, eventually a doctor did come round, and was kind and informative.

The second day, my sister and I visited our mother. She was sitting up in the chair beside the bed, penned in by the table (which had been placed in such a way that she could not get up and move around). She had a drip in her arm, and there was a big bruise beside it, which ran round her arm, that looked like it had been banged quite hard (we didn’t get a reasonable explanation for this). She still had dried blood all round her mouth, and in her hair, which no-one had been considerate enough to clean up, so that my sister had to ask for the utilities to do so.

We were asked to get her to drink something, because she was very dehydrated, and she wouldn’t drink… However, a beaker with a sip lid, like a child’s cup, had been left in front of her. Of course, being used to drinking out of a normal cup or glass, she didn’t recognise this was a drink for her. Taking the lid off, we offered the water to her, and she drank readily and quickly. Then, looking round for more water, we found none. I had to ask at the desk if there was some more water available. Apparently they’d moved her water so that she wouldn’t spill it – to the desk top- way out of reach, because she’d been trapped in the chair.
Ok, I can understand that if she was getting agitated (especially being penned in) that the water might be moved, but then someone should have been there on a regular basis, considering her dehydration, to ensure that she drank something. (Her mouth eventually had cracks like the Grand Canyon running through it, making it
so sore to eat or drink that nothing could pass that way!)

And then, where food was concerned, we saw on her chart she’d had liquidised food, and hadn’t eaten it – not surprisingly since she was used to eating normal food, that hasn’t been cut up or mushed in any way. She was still perfectly capable of feeding herself. When I went to the desk to ask why she had been given liquidised food, I was told that it was because that was what they thought she ate. It also transpired that they had tried to spoon-feed her, and this had (not surprisingly, since she is an independent and proud person) been unsuccessful.

I pointed out that if someone had phoned the home, or either of my two sisters or myself, anyone could have told them that she eats normal food, and feeds herself. And that if they had asked, we could also have told them that she usually drinks out of a normal beaker, without a sip-top. At this point I was more than just a little fed up that no-one had asked, given that contact numbers had been specifically given. Whilst my sister and I were there, on this visit, we were able to ‘encourage’ mum to drink several drinks.

The third day my sister phoned to find out how mum was, and was told she had a urine infection. When she later visited, she found mum in bed, and was told she couldn’t get up, which was puzzling since she’d been up the previous day. The staff also believed that she was unable to get up, so had put up the side bed-guards, and left her there. She was still in the same place she’d been in the assessment ward she’d been for the last couple of days, which was of course, not ideal, since she needed a different type of attention.

When mum indicated she needed to go to the toilet, my sister was going to get her up so she could go to the toilet, but was told she mustn’t. She was told mum had to use a bedpan, even though my sister explained that our mother wasn’t used to using one, so would most likely hold on, because it wouldn’t feel right. And being as, we had been told, she had a urinary infection, this would not be a good idea. My sister (a nurse herself) said that if she could get her upright and was given a camode, she would be able to help her to the toilet.

Obviously, knowing nurses are not allowed to help lift these days, my sister asked if a hoist could be used, and was told ‘no’, because Mum was apparently unable to walk without the aid of a zimmer-frame (news to us). Again, the staff hadn’t asked, and had assumed that she was normally immobile, and unable to walk without aid! Mum didn’t have pads on, nor did she have a catheter, which meant that basically she was meant to ‘wet herself’.
This I found very dehumanising and humiliating for her. It was insulting to her as a person, who actually
did have bladder control, and was able to go to the toilet herself normally. She was being treated like it didn’t matter, no-one could be bothered to help (and there were staff around chatting about things other than work). That day, I wrote out a list of things that mum could and couldn’t do, and also the fact that her childhood language is Danish, so things may need to be explained a couple of times to get her to understand, but that she was usually co-operative if she knew what was wanted of her.

The third day: Again my sister phoned to find out how mum was, and whether she had been taken to the toilet, having complained about it yesterday. She was told there was no need for mum to be taken to the toilet, because she had a catheter. My sister then questioned this, because usually a catheter isn’t used when there is a urinary infection.

When she came off the phone, my sister was not only dissatisfied with the responses, but also upset with how she was being treated. When she questioned that a hoist hadn’t been used to get up to go to the toilet (understand mum had been up sitting in the chair the previous day), she was told that she 'didn’t understand the position of a nurse'. Well, this was a very big, and a very false assumption, considering my sister is, in fact, a nurse herself. And, she felt the behaviour she was seeing towards mum was not typical of behaviour to patients in other places. Obviously she pointed this out. She then phoned up the nursing home, to see if they would accept her back there, if we could get her discharged (released!) from the hospital. Staff there explained that they couldn’t unless she’d been discharged, but said they would ring the hospital to find out what was happening. The answers she was given were different from the answers given to my sister. One of the differences being that ‘of course she wasn’t using a catheter, because she had a urinary infection, and one doesn’t use a catheter in those cases’. Of course, hearing this, my sister felt she’d been mislead and ‘fobbed off’.

Fourth day: On arrival, mum was more alert, and looked at the magazines I’d brought. I persuaded her to drink some juice and water, which had been placed on a table an arms reach from the bed, and she ate some of the strawberries I'd brought her.

In a while she wanted to get out of bed to go to the toilet. I told her to hold on, and I'd find help to assist her. At the desk, even though I tried to catch their attention, I had to patiently wait for one of the staff to finish chatting about something that had happened to her last night (a night out), before being able to catch any attention, and ask for help. I was told that mum was unable to move, that they’d tried to get her to move earlier, but she couldn’t, even with help. She said she didn’t need to get out of bed anyway, since she had a pad on.

I pointed out to this staff member that mum was already half out of bed (she could be seen from the desk). When I finally got the nurse to come to the bed, we found mum was indeed half out of the bed, and it could clearly be seen (since her gown was around her waist) that she had no pad or anything else on. To get her back into bed, she had to be stood for a moment at the bedside, before readjusting her position, swinging her around and back to the lying position. It appeared she had been capable of some movement by herself, and of standing with support. A camode would not have been beyond her....

Mum had to go into the hospital again not long after this time, and her treatment was equivalent. If it hadn't been for my sisters and I constantly hammering on at the nurses, I believe it would have been a lot worse. She was treated as less than human, as an inconvenience. She would have been ashamed to have behaved like those nurses did! And, I know others who've been in the same hospital, in the same ward, who've had very good treatment. The opposite, in fact, to my mother's. I truly believe that if a person is unable to speak out for themselves, they get relegated the short end of the stick. Who are they going to tell?

Well, I shall complete this letter, even though a year overdue, and send it. Someone has to speak for those without a voice.

© Annelisa Christensen 8:24 pm

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At May 16, 2009 8:33 pm, Anonymous Maryam in Marrakesh said...

Holy cow! This posting is a shocker. NO WONDER you are upset. Your poor Mom and what outrageous treatment. My mother used to be a doctor for a few homes for senior citizens and she was constantly haranguing the nurses (and families) to do more, try harder. Your Mom would be so proud if she knew what you were doing on her behalf. Incidentally, I used to volunteer in the US at senior citizens home and quite a number of the seniors had Alzheimers. I would bring family photo albums and we would have long, pleasant chats. They would never remember me the following week but I was always happy to make their day a little more pleasant.

At May 16, 2009 8:35 pm, Anonymous Quasar9 said...

Hi Annelisa,
joking aside - four kids must a real hectic and sometimes drive one up the wall (mad)
But one thing is for sure children are good around an Alzheimer's patient.

I think people with Alzheimer's need be surrounded by caring and loving people, no matter how much of a handful the young ones are.

Amazing there is so little that can be done for this condition by Dr who promise so many mitacle cures to so many other diseases.

PS - If I may say, You look mighty good for someone with their hands full with four kids and a mother in need of care. But no one has unlimited energy - wish you were nearer close by, I'd be able to stop by and maybe occassionally help lighten the load a 'little'

Wishing you restful nights, to re-energise for busy filled days

At May 16, 2009 8:36 pm, Blogger Annelisa said...

Hello Maryam in Marrakesh, and thanks for visiting!

Yes, the treatment was shocking. My mum would've been upset if she'd seen anyone behave like that to anyone else.

Luckily, the home we found is wonderful, and the care is given with respect and affection.

My gripe is mostly with the hospital, where mum wasn't even treated as a person - she simply wasn't treated (so long as one of us children weren't there). The only times anything got done/ any improvements made to her situation were when we complained, or wrote letters detailing what she could and couldn't manage.

I don't doubt that there are caring, loving, considerate staff there, but the only evidence we saw of it was when we, ourselves, could be reacted to. When one of the less fortunate patients needed something, I didn't see any response. It was like the patients were only trying to be a nuisance (like the elderly patient at my friend's hospital)!

Quasar9 - We kept mum at home for 2 years, so she could be with the family. During this time, she deteriorated a lot. Although she liked being round the children, they found it really upsetting - one of my children used to hide in the bedroom whenever she was here. It didn't do a lot for my family life.

All this was last year, and this year (even though she's been in hospital with more fits, she's been whisked out of there equally fast by the home she's with, or by one of us daughters) has been better and more settled.

(I only have 3 children at home now - one has gone to live with their dad) so it's not so hectic as it was. Looking after mum and 4 children was probably the hardest thing I've had to do in my life! Each one having their own set of problems...

But, things are much better now!

A few exciting discoveries have been made recently regarding certain genes, which affect the onset of the disease... I'm really hoping that they hurry up, because, of all my family I am the most physically similar to my mum and grandmother (who also had Alzheimers), so I fear I'm the most likely to get it!

But I'm drinking my red wine to help stave it off! :-) (oh, as well as excercise, loads of fruit & veg etc...)

Thanks for the compliments :-) I reckon we'll probably meet up some day, huh?

Gotta go - sick kid and school run!

Have a good day yourself...

At May 16, 2009 8:37 pm, Anonymous Quasar9 said...

"A few exciting discoveries have been made recently regarding certain genes, which affect the onset of the disease... I'm really hoping that they hurry up, because, of all my family I am the most physically similar to my mum and grandmother (who also had Alzheimers), so I fear I'm the most likely to get it! "

You don't use that as a chat-up line at the pub. lol!

No, no laughing matter - but hey laughing can only do us good.

I remember going to my cousin's wedding. He was marrying this goregeous girl, her mother was gorgeous too (but had developed ms)
My mother couldn't resist commenting what awaited her nephew, fortunately not in earshot of the groom - before his wedding night!

At May 16, 2009 8:38 pm, Blogger Annelisa said...

:-D What makes you think I need to do any chatting up down the pub??!!

Seriously, though, it does cross my mind occassionally, that I should live life to the full - I might not remember it later, but I'll sure enjoy it now! :-)

You can't live in fear of the future, can you?! But that's what so many insurance companies prey off. Funnily enough, my mum missed insuring herself against Alzheimer's developing (which would've paid for her care) by about a couple of months... we hadn't heard of it before then. Unfortunately, it was just after she was diagnosed at the onset of the disease, so even though she was perfectly capable of making decisions, she wasn't able to cover herself!

It's a shame, though, if you've got no money at all, you get everything paid for. But if you've got any assets, they all get used in the care. So, whichever way you look at it, you may as well spend your money and have a good time with it first!

I read a really good email recently, about an old woman who kept going on one cruise after another. Turned out, it was cheaper than a residential home, and the care was better. On top of which she got to see the world... I think that's what I'd like to do! :-)

At May 16, 2009 8:39 pm, Anonymous Quasar9 said...

the bit I don't understand about these insurance companies who for 25pence a day can offer false promises £30,000 plus whatever hospital bills, surgery & treatment
A £100 a year private insurance?

The NHS gets £1500 a year for every man woman and child in the uk - you'd think with £90 billion they could offer a much better deal.
The only problem is all the NHS surgeons & consultants - open up their private surgery and private hospitals, and have no time to treat NHS patients - but they still want their £100,000 a year NHS pay -

I better not start Annelisa
Makes my blood boil, how these people can justify conning people into private education, private health insurance and private pensions - and them cream off the state to pay for their children's private education. I really have very little Time for the BMA, and the BDA, the Medical Profession, and the British Dental association - they are the most corrupt dishonest & perverse professions on earth.

Greed, greed & more greed
Money from the Public Purse, Money from the Private sector, money from charity - yeah right charity begins at home - NHS patients can wait - they are commodities to be exploited when claiming funding.
Not people to be treated cured and/or cared for with dignity

PS - I wasn't implying that you need to do any chatting up down the pub (or anywhere). lol!
Just trying to add a little humour to an otherwise serious topic

At May 16, 2009 8:41 pm, Anonymous Ashish said...

This post was shocking, all the more so because we still believe that what doctors and nurses say is a professional opinion and most lay folks would not know better.
I admire your and your sister's attitude to make sure that your mom got a good treatment and was treated with respect.

At May 16, 2009 8:42 pm, Blogger Annelisa said...

Quasar9 - yes, you're absolutely right! The whole medical/dental professions could do with a grand shake-up (maybe it would even be better for each person to have a private insurance like the states... except that the government wouldn't reduce the taxes they take to pay for it, so we'd be paying twice over!)

My friend, who has cancer, was told she must have an immediate operation to remove the initial lumps found - they put her on a 3 month waiting list!! In the end, her dad had to find the funds to pay for it himself, rather than risk her life! That I think is outrageous!

And, I could cite other similar incidences that have happened to people I know.

How is it that so much good money is still being thrown after bad? They know it's not working, so surely they should shake it up a bit.

As you say, it's not a caring profession at all - we are simply a means to the 'professional's' paycheck! Depressing.

And, when it was in the news that they deliberately don't clear the waiting lists (as if!) - that's even worse... What harm would it do to actually help people as and when they need it? What good does it do to keep people in pain and suffering, purely for political purposes?

I really don't know how they can do this!!

At May 16, 2009 8:43 pm, Blogger Annelisa said...


It's a terrible thing, that the professionals in the hospitals lie to you, or don't even care enough to check up on major details (like whether someone can walk or not, or whether they eat food normally, or can take themselves to the toilet...) Even if they had a form to fill in regarding all the things she could and couldn't do, I wouldn't have minded, since we were sitting for hours in the hospital waiting for someone to come over!

I was really glad my sister is a nurse, or we could have been fobbed off on a few things. Other people probably would have been. Like you say, people don't like to question doctor's and nurses, because they have the knowledge, but really, they're just human. And hospitals no longer breed a caring attitude.

I thought this attitude was everywhere, until mum was moved to her new home. There, she has been treated with nothing but respect and companionship - nothing taken for granted. Every meal they give her the choice to feed herself... it's only if she shows no recognition of the food they try to feed her. And if she then wants to take over, they let her. It makes all the difference in the world, allowing her those small choices.

At May 17, 2009 10:45 am, Blogger Akelamalu said...

It is disgusting the way elderly and sometimes confused people are treated in some hospitals. There are staff that shouldn't be nursing animals let alone human beings - I've seen it first hand when my Dad has been in hospital (frequently) and I have been VERY vocal on those occasions. I'm so sorry to hear that your Mum's last days were so marred by uncaring nursing staff my dear. Do finish your letter of complaint and send it to the highest authority. It is only by people like yourself complaining that things will change. It won't help your Mum now but it may help someone's elses and it will surely make you feel better. xx

At May 17, 2009 1:55 pm, Blogger Water Baby said...

My grandfather had Alzheimer's and (as I'm sure you have seen over at my dad's blog) was mistreated as well. Turns out my mother is a very passionate woman and immediately removed him from the home he was in. Daddy says that she worked wonders. I wasn't ever able to meet him (not being born yet) but I think I would have loved both him and my grandmother! It is such a great sadness when the health care system fails us. Over here in the US they still give us the run around and denied claims from insurance companies. If you don't have the 'proper' insurance, you either go into debt or just plain don't get treated


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