NHS doesn’t understand carers who have Type 2

[MikePreT2]

Just been for an interview with the surgery nurse about my first step into diabetes. After giving me a 79 page booklet and telling me how I must increase my exercise, reduce carbohydrates, reduce sugar, prepare healthy meals, give up alcohol as far as possible. I had to tell her that is a 24 hour unpaid kepI had to tell her that is a 24 hour unpaid carer for my husband who has severe physical and dementia issues to do with PSP, is paraplegic, doubly incontinent, cannot feed or drink without help And requires 24-hour care.

Somebody please tell me how I am supposed to implement these new measures when I already have no time for my own life let alone time to add into a day that’s already full from the minute I get up to the minute I go to bed.

My husband requires three special meals a day which cannot include crunchy vegetables or nuts or things which are healthy because he will choke on them. He requires at least eight drinks a day which take 20 minutes each to feed them. The meals take at least half an hour from beginning to end just feeding him not the preparation. He requires changing and has dressings on his pressure sore which require changing frequently. Also, he cannot be left alone for safety reasons and I get six hours a week out of 168 hours with some care from a carer who is not qualified to feed him changing or give him a drink.

When I Raised this with the nurse she said to me “ if you don’t want my help that’s fine).

Well I don’t think that’s fine I think the health service needs to work on how to help people like me who have no options no time no ability to alter things for themselves.

Any suggestions welcome. If you’ve never cared for somebody 24-hour is a day you probably won’t understand what I’m going through.

Last thing, I could argue that maybe I don’t wanna live after my husband dies so why would I bother getting myself Healthy?

I can hardly begin to tell you how hard this work is but you do it for love. Paragraph what you don’t need is to be told off and that you’re doing everything wrong because now my mood has plummeted and it’s not my fault, none of this. Why can’t the health service work better at providing the proper level of personal care that patients need?

 

[Windy]

I'm sorry to hear about your experience with the nurse, I don't think she has any understanding of the pressures that you're under, or that there are barriers to you doing all the stuff she suggested.

Can I ask if you're getting any support from your local authority (ie the council), ie Carer's assessments/ breaks?

You must be exhausted, and I know you do it for love, but you also need time to top your batteries up so that you can keep going.
Please contact the Adult social care department, as they are legally obliged to do a carer's assessment. I would hope that they could offer you some support - Dont' hold back when you tell them - explain that you're suffering with a low mood, worried about developing diabetes, caring full time, except when you get your 6 hours of carer support, and that you're at the end of your tether.
My local council offers respite care breaks to give carers time to have a rest, I know it might not be what you want, as you are committed to caring, but you also need to keep yourself well.
Funding is a problem with local authorities, but it's more expensive if you fall ill and they have to pay for your husband to be put into a nursing home for a period of time, and that's why they offer support to carers.
If you could have a few days when your husband was being looked after by someone else in a respite care home, or if you could get half a day a week when he went to a day centre, it would give you a chance to get some rest. I'm concerned your burning yourself out.
As for not wanting to go on after he dies, I'm sure you have friends and family who would miss you dearly if you weren't here. I know it's tough, but please ask for support before you burn out.

 

[Leadinglights]

Welcome to the forum, I hope you will find some words of wisdom which will help you.
You are right in saying people don't realise how hard it is to be a carer unless they have been in that position. It sounds as if you ought to be able to get more help but I know that is difficult.
You have only been diagnosed as prediabetic so some modest changes to your diet will probably be sufficient to improve your blood glucose levels. So cutting out cakes, biscuits and sugary drinks and just reducing portions of high carb foods and having more veg and protein would be a good start.
Don't forget that you need to stay healthy yourself to be able to care for your husband. You do not need to rush into making big changes but just bit by bit.
If you would like to post what sort of meals you have people may be able to make suggestions where you could make some savings.

 

[Docb]

Hi @MikePreT2. There are a few carers with diabetes (I'm one) on the forum but nobody who provides the level of care that you do as far as I am aware.

I don't know what to say about the reaction of your diabetes nurse so I'll make a couple of other comments ....

You are at risk of diabetes and that means that you are below the formal diagnosis limit and your target is to make sure that you do not get to that level. To should be able to do that by making some minor changes to what you eat and drink. If you give us some idea of what your typical meals are then we should be able to come up with some modifications which will not be too troublesome in terms of fitting into your schedule. You can be absolutely assured that we will be a lot more helpful than the DN.

I would also like echo @Windy 's comment about making contact with your local authority to find out what carer support services are available, if you have not done so already. Support can be a bit of a post code lottery but there are statutory obligations to provide carer support so something must be there. In our area carer services are very good and as a result of the support given me I now volunteer for the charity who provide them. I hope they are equally good in your area.

Keep in touch. Caring can be a lonely business and forums like this can be a very useful outlet and provide something other than your caring duties to think about. I know It helps to keep me sane.

 

[trophywench]

Can I ask a question - does your GP surgery know that you are personally in this unpaid position?

If so, this proves anyway that the nurse (?) had not bothered to read your notes, which surely should include facts like you've outlined to us. Anyway - whatever - COMPLAIN about her!

 

[Drummer]

You should not be left in the situation of trying to care for your husband whilst having to deal with your own health problems.
Maybe you ought to contact the GP who gave you the diagnosis, and your husband's doctor if that is someone different and tell them that the situation is just not workable with the amount of help you are getting.
I am sure that the provider are only too glad to get away with the barest of bare minimums but perhaps if you point out that if more help is not given then they will have far more to do in the future they might buck their ideas up.

 

[Docb]

The problem is Drummer, that both care support and carer support are the responsibility of the local authority and other than expressing some sympathy for the situation, GP's don't often get involved. It is understandable that they don't because other than making a referral to social services, there is little they can do.

The care system is broken with cracks everywhere and what support you get depends on the line taken by the local authority and whomsoever is in charge. I really do hope that @MikePreT2 lives in an area where services are good because help is needed and deserved and the law requires that it is provided. It is one of those areas that cash strapped councils are cutting back on to the point where some are not even fulfilling their statutory obligations.

 

[mikeyB]

You clearly need some help with your husband. I assume you have carers allowance. I don’t think anyone on the forum could advise you, but if you go to this site:

FAQs - PSPA

pspassociation.org.uk

That page has the helpline number on it, and they will be able to advise you on getting help and support. There is no need for you to do it alone, and local hospices can give your husband a holiday bed while giving your husband the care he needs, even just for a week or two.

 

[Leadinglights]

What I hope you will get from this site is support and help with dealing with your diabetes and suggesting ways which you can make some adjustments to your diet which hopefully would not be too onerous.

 

[MikePreT2]

Hi @MikePreT2. There are a few carers with diabetes (I'm one) on the forum but nobody who provides the level of care that you do as far as I am aware.

I don't know what to say about the reaction of your diabetes nurse so I'll make a couple of other comments ....

You are at risk of diabetes and that means that you are below the formal diagnosis limit and your target is to make sure that you do not get to that level. To should be able to do that by making some minor changes to what you eat and drink. If you give us some idea of what your typical meals are then we should be able to come up with some modifications which will not be too troublesome in terms of fitting into your schedule. You can be absolutely assured that we will be a lot more helpful than the DN.

I would also like echo @Windy 's comment about making contact with your local authority to find out what carer support services are available, if you have not done so already. Support can be a bit of a post code lottery but there are statutory obligations to provide carer support so something must be there. In our area carer services are very good and as a result of the support given me I now volunteer for the charity who provide them. I hope they are equally good in your area.

Keep in touch. Caring can be a lonely business and forums like this can be a very useful outlet and provide something other than your caring duties to think about. I know It helps to keep me sane.

Thank you Docb. The only care that the local authority provides is to put me in touch with local micro carers and although they put some money in my bank account to pay for six hours a week for a carer they are presently looking at our bank accounts to see how much of that we should pay for. I find it extraordinary that if I decided not to care for my husband estate would have A much more substantial bill than giving me a little bit of support but fairness is not part of the game apparently.

Ordinarily, somebody as profoundly affected by dementia and physical symptoms as my husband is likely to be in care. Whether the would live that long, whether they would be happy with that I’ll be lookEd After with love and compassion. What he would get is food made for him every day, drinks he’d had his pressure sores treated and will be washed dressed and had his nappies changed. I can’t do that that’s why is here with me and I’m happy to do it but all I encounter with health services is a misunderstanding about the level of his health and needs and over assumption that I have endless amounts of time on my hands to pick up more tasks and more activities and spend more time doing more work.

I am now one point into diabetes Type II so I’ve gone from pre-diabetes in about a year and it’s not surprising because I’ve had no opportunity to exercise because I’m not allowed to leave him alone, I drink moderately every evening as a treat to me For the enormous amount of hard work that I do and help me relax and I prepare three meals a day plus snacks +8 drinks for my husband Every day. I don’t have time sadly to cook another three mils on top of three mils for my partner. Unfortunately he comes under a malnutrition code where I have to feed him particularly high carbohydrates, high-fat and high sugar foods to build up his reserves of fat. He cannot eat anything that raw like salads or chopped vegetables and has difficulty with meals that aren’t soft and consistency like soup. He has a good swallowing reflex but frequently chokes which can give rise to aspiration pneumonia which of course could kill him. I regularly by prunes, pears, grapes tomatoes and ingredients for curries and stews, lean beef, chicken Bacon and eggs. I occasionally get a number of meals from Cook or Wiltshire farm foods, Marks & Spencer and Waitrose. Of a lot of prepared fresh fruit like pineapple, mango and berries. Every morning we have porridge with cooked fresh raspberries and blueberries and a little brown toast. I don’t drink fizzy drinks, I drink tea with one sugar and every morning I have half a glass of fruit juice.
I absolutely don’t get out to exercise because he can’t be left alone hi and I live in a village has a very little scope for walking or running very far without risking 60 mile an hour local roads.

i’ve just ordered an exercise bike but I am 67 and I don’t expect to be losing very many calories on that.

If I sound negative it’s because I feel like I’ve been hit around the head with a big stick And I don’t feel that I have very much scope to change very much in my life let alone any time. I’ve lost that certain spark be ause Not only have I developed Type II diabetes because of a lifestyle I can’t alter and because I won’t or can’t respond to the only suggested remedies that they give.

sorry to moan it’s not my usual way of doing things but I’m tired.

 

[Leadinglights]

I can see you have your work cut out in looking after your husband but there are a few things that stand out as doing you no favours when it come to managing your blood glucose levels.
The sugar in your tea will add up to quite a lot of carbs in the day so could you try reducing it gradually so you get used to it without sugar or try a sweetener instead.
Fruit juice is very high carb so you could try flavoured water instead.
Porridge is something many people can't tolerate and together with toast at breakfast is high carb so you could try full fat Greek yoghurt with the berries and you would then probably be Ok with the toast. You could keep packs of frozen mixed berries to use.
Fruits like pineapple, mangos, grapes and prunes are the highest carb fruits but apples, pears, kiwi, are much lower.
There is no real reason to cook separate meals but maybe reduce your portion of those which are high carb and add extra vegetables or salad.
Soups are good which you can also have avoiding ones with potatoes is better. If you can do homemade then all the better.
Some people use a slow cooker where you can just throw everything in and let it get on with the job, pre-prepared frozen veg packs are easy.
I hope you don't think I am being critical but those thing struck me as things which could be easy to change and help lower your blood glucose.

 

[Amigo]

Just been for an interview with the surgery nurse about my first step into diabetes. After giving me a 79 page booklet and telling me how I must increase my exercise, reduce carbohydrates, reduce sugar, prepare healthy meals, give up alcohol as far as possible. I had to tell her that is a 24 hour unpaid kepI had to tell her that is a 24 hour unpaid carer for my husband who has severe physical and dementia issues to do with PSP, is paraplegic, doubly incontinent, cannot feed or drink without help And requires 24-hour care.

Somebody please tell me how I am supposed to implement these new measures when I already have no time for my own life let alone time to add into a day that’s already full from the minute I get up to the minute I go to bed.

My husband requires three special meals a day which cannot include crunchy vegetables or nuts or things which are healthy because he will choke on them. He requires at least eight drinks a day which take 20 minutes each to feed them. The meals take at least half an hour from beginning to end just feeding him not the preparation. He requires changing and has dressings on his pressure sore which require changing frequently. Also, he cannot be left alone for safety reasons and I get six hours a week out of 168 hours with some care from a carer who is not qualified to feed him changing or give him a drink.

When I Raised this with the nurse she said to me “ if you don’t want my help that’s fine).

Well I don’t think that’s fine I think the health service needs to work on how to help people like me who have no options no time no ability to alter things for themselves.

Any suggestions welcome. If you’ve never cared for somebody 24-hour is a day you probably won’t understand what I’m going through.

Last thing, I could argue that maybe I don’t wanna live after my husband dies so why would I bother getting myself Healthy?

I can hardly begin to tell you how hard this work is but you do it for love. Paragraph what you don’t need is to be told off and that you’re doing everything wrong because now my mood has plummeted and it’s not my fault, none of this. Why can’t the health service work better at providing the proper level of personal care that patients need?

Hi Mike, I know your concern is finding the time and energy to address your own diabetic needs but it’s hard not to concentrate on the appalling lack of support you’re receiving to care for your husband at home. It seems to me that without your constant attention, he’d require nursing care due to the frequency and intensity of care he requires. I know you provide the care out of love and devotion (and we never feel another person would be able to provide it quite as well) but you have rights that seem to have been overlooked. Forget this nurse…she sounds clueless.
Contact Social Services and request full assessments for both your husband and yourself as his carer. Ask for a Care Plan for each of you and ask how the identified needs are going to be met. Yes it’s a means tested service but there is a possibility your husband could meet the criteria for Continuing Health Care at home. This is funded by the NHS and avoids you having to pay. It’s hellish hard to get but worth pursuing. The checklist covers 11 core elements of care including continence, breathing, mobility, medication, emotional needs and cognition. What’s important is the frequency and intensity of the care and whether it constitutes nursing care. As your husband is at severe risk of pressure sores and breakdown of skin plus choking risks, insist that it is! I did this work professionally for over 30 yrs and am also a full time carer who honestly understands these pressures.
As for your diabetic situation, you can do this without any spectacular processes or masses of more time. It simply means little but important changes to how much bread and ‘quick grab’ snacks you have, generally reducing carbs and basic housework is exercise too. You’ll soon get it down without the useless advice of Nurse Ratchett!

Good luck. Amigo

 

[Docb]

The money you are being paid will be to support your husband, the person being cared for. What you need to be pressing for is support for you, the carer. You are absolutely right that if you were not there and the cost of residential care fell on the state, it would cost far more than the cost of providing you with some support. Some councils recognise this and automatically put carers in into a carer support system. Others have to be pressed even to get their statutary rights.

As a minimum you should get a carers assessment completed. This will go through loads of stuff and should identify things that YOU need to help you be a carer. Anything and everything should be looked at from money to finding ways of making sure you find ways of escaping your carer role if only for short periods. As @mikeyB says, you should be entitled to carers allowance and the carers assessment should cover that.

Sounds like a bit of a faff, but well worth it. If you are lucky you will make contact with somebody who will guide you through whatever exists in your area.

You have had some good pointers about sorting out your eating plans. Dont be afraid to ask us about anything on that subject - you will get plenty of ideas.

 

[Amigo]

The Carers Allowance isn’t dependent on an assessment. It‘s a DWP benefit separate from the community care assessment from Social Services. It’s awarded based on the benefits the cared for person receives. ‘You could get £67.60 a week if you care for someone at least 35 hours a week and they get certain benefits.‘ I’d be surprised if Mike isn’t already receiving that but of course it’s taxed and taken into account even from the Carer’s retirement pension 🙄

Carer's Allowance

Apply for Carer's Allowance - money to help you look after someone who needs to be cared for. Apply online or use form DS700.

www.gov.uk

 

[Drummer]

The problem is Drummer, that both care support and carer support are the responsibility of the local authority and other than expressing some sympathy for the situation, GP's don't often get involved. It is understandable that they don't because other than making a referral to social services, there is little they can do.

The care system is broken with cracks everywhere and what support you get depends on the line taken by the local authority and whomsoever is in charge. I really do hope that @MikePreT2 lives in an area where services are good because help is needed and deserved and the law requires that it is provided. It is one of those areas that cash strapped councils are cutting back on to the point where some are not even fulfilling their statutory obligations.

When my mother in law was in need of carers it was the GP who assessed the situation for the local authority - or so I thought. It was some years ago now, and a lot has gone on since then, of course.

 

[Amigo]

When my mother in law was in need of carers it was the GP who assessed the situation for the local authority - or so I thought. It was some years ago now, and a lot has gone on since then, of course.

That must have been nearly 32 yrs ago Drummer when the Community Care Act was introduced transferring these responsibilities to Local Authorities.

 

[Docb]

Thanks for the clarification @Amigo.

It's a while since my carers assessment was done which I why I was a bit vague on the details. I don't qualify for any benefits but the assessment showed I was entitled to some money to use to "get away" for a few days on the odd occasion when I can find a substitute carer. Much more important is that the assessment was the gateway into the local caring community where I met other carers and as I say eventually became a volunteer with the organisation that provide carer services for Lancs CC. All of that, together with helping on this forum, allows my mind to take time out from being a carer without leaving the carer environment. If you do not have some sort of get out then the relentlessness of caring will eventually take its toll.

 

[Amigo]

Thanks for the clarification @Amigo.

It's a while since my carers assessment was done which I why I was a bit vague on the details. I don't qualify for any benefits but the assessment showed I was entitled to some money to use to "get away" for a few days on the odd occasion when I can find a substitute carer. Much more important is that the assessment was the gateway into the local caring community where I met other carers and as I say eventually became a volunteer with the organisation that provide carer services for Lancs CC. All of that, together with helping on this forum, allows my mind to take time out from being a carer without leaving the carer environment. If you do not have some sort of get out then the relentlessness of caring will eventually take its toll.

Absolutely Doc. The assessment you received from Social Services is the gateway into respite/support services they can either provide or refer you to. Glad you were able to receive some support and use your experience to go on and support others. I was Carer Services Manager for the LA as one of my roles in a previous life.
The Carers Allowance from the DWP is paltry at approx £67 a week and taxable. Also doesn’t increase no matter how many people you care for 🙄