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Why is being a carer so hard - Carers UK Forum

Why is being a carer so hard

For issues specific to caring for someone with dementia.
Hello,I care for my wife who has dementia and from the start i have had to fight to get what i need for her and when i ask for help i just get trouble,for example people kept on at me to get a break as i looked tired so i took her to the MIND centre to see if it would help where the people there decided that i had raped her that morning! Unbeleivable but true,just because she was upset and crying,they didnt even give me a chance to explain her condition, get help? yeah right those people are just plain nasty and vindictive.I ask for a different meal replacement as often she will not eat and is diabetic,at the moment they give her fortisip which put her blood sugars in orbit,i ask for an alternative but am told there isnt one.I asked for a higher grade incontinence pad for nightime as the bed was often soaked in the morning and after much fuss they agreed but at the sametime downgraded her daytime pads and so now when we are out if she has an accident it shows on her trousers and must make her feel terrible,do people go out of their way to make life as hard as they can for a carer or am i just the exeption?

I copy and pasted this from the Fortisip web site. I'll go and check out ensure now (that's the one my mum had, but she's not diabetic.

Which products are suitable for people with Diabetes?
It is important to note that, as with any patient who is not managing to achieve an adequate diet from 'normal' foods, it is essential that a patient with diabetes receives some form of nutritional support to ensure that their nutritional requirements are met. In addition, patients with diabetes on medication should receive a regular intake of carbohydrate in order to prevent low blood sugar levels. Fortisip Multi Fibre and Fortisip Neutral are a good choice of fortisip drinks . Many of the other Nutricia oral nutritional supplements may be considered, however these should be used under medical supervision and advice sought from a dietitian or doctor as to the most appropriate sip feed for that patient and how it should be used. Where oral nutritional supplements are being given the following is recommended:

Supplements should be sipped slowly over a period of approximately 20 minutes in order to avoid any rapid rise in blood glucose levels.
Blood glucose levels should be monitored regularly and oral hypoglycaemic tablets/insulin modified accordingly.
The number of cartons a patient requires should be decided by a dietitian or doctor.
Thanks for your valueable reply,i did ask before if there was a sugar free version and i was told there was not,i will now get the gp to amend the script and she cannot argue with me this time,they moan and groan about the cost of this but maybe if they were put on performance related pay there might be a better drugs budget to pay for these things.
people kept on at me to get a break as i looked tired so i took her to the MIND centre to see if it would help
Hi tony, the MIND centre may not have been the best place for her. Can you get some-one in to sit and chat to her for a couple of hours to give you a break? I believe that there are some voluntary workers who will do this, Crossroads in my area, but there may be a different organisation in your area.
I expect you have already checked out the Alzheimers web-site, but have a look to see if they do anything in your area, there may be a drop-in session nearby.
Caring is indeed very hard work. Has your wife had a needs assessment recently to make sure you are receiving all the help you can? And have you had a carers assessment to see if there is any help that you can get? Has anyone talked about respite care?

Get back on to the continence nurse about the pads, its disgraceful that she has been downgraded. Unfortunately, it seems like carers really do have to fight for everything.
I feel your pain!
I'm now the main carer for my mother in law, as I'm on maternity leave (not going back though, as pregnant again) and my husband is in full time employment and in total earns more than double, almost triple, what I earned myself lol. My husband though, is my carer, as I'm partially disabled from arthritis :/

Having read your post this evening, I think, in actual fact, that we've got it quite easy Image - we get hassle ALL the time from my husband's sisters, and no support from them really, but mum has a carer every morning to get her up, showered, dressed and breakfasted. After which, she goes to a local day centre for the day, Monday-Friday (although we're having quite bad problems with them at the minute)... however, I do get respite every day (although only for 5-6 hours, which is my time to be a "real" mum, as I don't have to worry about mum.
Also, the first Saturday each month, she goes to the same day centre for a Saturday Social Club, which is provided by the local respite charity, crossroads - another person mentioned them - I'm in Surrey, obviously I don't know where you are, but I'm SURE there's something similar near you. We also have a lady come to our house for 3 hours a week to provide free respite care. This means we can go out, knowing if mum has a fall or a toiletting accident, there's someone there to help her, and also that she won't just wander off somewhere. - We live in a very private area, but it's still a concern, because she can open the door, but can't get her coat (+ probably wouldn't think of it) and would forget what she was doing/where she was going etc etc etc.
Anyway, we were put in touch with crossroads by another charity called carers support. Again, this may only apply in Surrey, but there must be a similar scheme near you. Our local one also put on free respite and information days - I went to a respite day in February, which was a pamper day, and I had a massage and reflexology - for FREE. They cover ALL your expenses: mileage, plus costs if you have to get a carer in for you to attend... it really would benefit you, I'm SURE!!

Chin up, anyway... the people who we have to go to are ignoramus's and clearly haven't the first clue on the job we're doing (and most probably couldn't do it themselves, which is why they're so useless at giving us what we need). Plus, when you're having a hard day with your wife, just remember it's not really your wife... It's this horrible disease that means she can't use her brain as she would usually

From reading your post, although we're
My husband is 61 and has been diagnosed with dementia for 5 years now! he was diagnosed with Alzheimer's which was then changed to fronto temporal dementia! Now written up as Atypical early onset dementia, complicated by superimposed depressive illness and paranoid psychosis! He seems to be experiencing a lot of the symptoms now of dementia with Lewy bodies, hallucinations and the stiffness and shakes relating to Parkinsonism. So still feel confused about his diagnosis, however he is how he is and the name is not always important!
He is unable to shower, dress himself, needs help with feeding and gets lost even going to the bathroom!
I have been coping very well up to now, but starting to feel under too much pressure with no support! he won't tolerate having anyone in to help, so am still doing everything myself as well as trying to continue to run our own business!
Something's got to give!!
Caring is hard!!! So hard!!!
Just letting off steam!
Hi Tonytress

Please don’t think I’m trying to teach my grandmother how to suck eggs here, but bare with me, for “I have a cunning plan,” to quote Baldrick from Blackadder.

I tend to get a bit obsessional when I can’t find something. After scouring the Ensure website for drinks suitable for diabetics and coming up with ZILCH, I then decided to try and track down other companies… surely they must exist?
Well, if they do, their websites must be using Klingon cloaking devices o something, because, try as I might, I sure as hell couldn’t track them down.

This astounded me, for the following reasons; I know next to nothing about diabetes; so couldn’t help getting side-tracked in my quest for the holy grail of sip drinks. I ended up clicking onto all sorts of sites, about diabetes, nutrition, etc. Bloody hell is it complicated!

I found out that there’s 3 types of diabetes, not just 2 as I’ve always though. Type 1 is genetic and type 2 is caused primarily through years of bad diet and obesity, but slim people can get it too if they have ‘baddy’ fat wrapped around their insides. Yup, there’s loads of different types of body fat: brown fat, white fat, blah, blah, blah! Eskimos have goody brown fat, which is why they have the lowest diabetes and heart attack rate in the world. We wobbly westerners have predominantly baddy white fat, which speaks for itself!
If that’s not confusing enough, it gets worse.

Type 3 is caused by being too skinny. It’s a problem primarily in the 3rd world, particularly sub-Sahara Africa and India; but it is increasing being noticed in the UK now, particularly amongst elderly dementia patients.

Now obviously your wife must be on the skinny side, or she’d never have been prescribed (begrudgingly) Fortisips in the first place. So I then decided to look up malnourishment.
I found out that malnourishment and undernourishment are two separate things, and not interchangeable terms like I thought.

Malnourishment simply means you are poorly nourished. If you eat nothing but junk food all day long, you may look hale and hearty, but you are going to poorly nourished. As such, many obese people are severely malnourished, apparently.
Undernourishment means your diet is fine, but you’re not getting enough of it, either due to illness or poverty.
Sometimes people can be both. Their diet is rubbish, and they’re not even getting enough of that.

Guess what? I also found out that the UK is in the middle of a massive malnutrition crisis. According to some government website, malnutrition is costing the UK economy £13 Billion (yes billion, not million) a year. How they came up with that figure, I’ve no idea, but I’ll take their word for it.

Which brings me back, in a roundabout kind of way, to specific diabetic sip drinks.
Both diabetes and dementia are increasing exponentially hand-in-hand across the UK.
As such, it’s obvious that more and more elderly people admitted to hospital will have diabetes of whatever type, and more and more will also be undernourished. Appetite tends to decrease with age, dramatically so in my mum’s case.
Therefore, the need for nourishment sip drinks, designed exclusively for diabetics, is going to explode.
Yet the only stuff I could track down was these multi-fibre and neutral Fortisips… and that’s it! Seems a bit pathetic to me.

Of course, that could be because I didn’t look hard enough, or did my searching wrong. But I don’t think so; I spent 4 hours researching this stuff. Surely even a computer numpty like me would have come up with SOMETHING in all that time, apart from Fortisips? And I think those are just better than the normal ones, and not designed specifically with diabetics in mind.
Therefore, your doc was more or less right.

So, I’m going to email Ensure and Nutricia, pointing out this gap in the market, and what future plans do they have to develop such a product, etc, etc.

I’ll keep you posted, if they bother to reply, with their responses. Image
Tony, i do not know why it is so hard by which I mean there is no answer. We do what we do because we want the best for our loved ones. And this sense of responsibility overwhelms us at times and frustrates us. On top of that the services and help for our carees are seldom handed to us on a plate. Politics, budgets, lack of resources???? All this and more. I have not got the answers.Wish I had.

Your wife, I assume (I am open to correction as always) has a consultant or diabetes team or at minimum a GP and I am wondering if the medics are up to date on the current situation. Sounds like they might need a nudge.

Sajehar, yes I can see you are on a mission! Forums such as this provide us with curiosity and enable us to find out more about the illnesses, disabilities and conditions that other carers deal with. I understand your enthusiasm for research. Go with the flow but please don't get depressed. I sound like Granny! Lol

Some quick tips for you now.
If you go to the main website of Carers uk (Press The key called HOME which is third line down from top of every page in the forum, top left corner) and key nutricia or nutrition in the search you might find out more things you are looking for. Of course you may have used that route already which will mean I am wasting my time! There is some sort of link or teaming up between CUK and the Nutricia company. I only skimmed it.

Diabetes. A relevant thing to remember is that people with diabetes as well as those without diabetes do also need "sugar" of some sort to survive.
You probably know that "sugars" are made in the body as it breaks down other foodstuffs.

Managing diabetes is all about balancing food intake with activity levels and with stress and with believe it or not the weather or climate.And of course with the medication. I am fairly certain that I might have missed something there but I am open to correction.Ah yes, with any concurrent illnesses or conditions and or medications for these.

With that in mind your mission to find a perfect food supplement or food substitute changes a bit. Do not let me dampen your enthusiasm though, you have already helped Tony. Image

And it's a goodnight from me. Shhleeepy.
There is an old and wise expression that a little knowledge is a dangerous thing.

And I'm sure the mysterious 'they' are right.

My reply back is, "How the hell do you have it then, without having just a little to begin with too?"

Bit of a Catch 22 that one!

I often wonder where 'they' started from..... Image
Image Image lol lol I do not know!! But I do know you are a star! And a hard working one at that.