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Needing support as a carer

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Johnsgirl

Active Member
Relationship to Diabetes
Carer/Partner
Hi, I'm Johnsgirl. I have been with John for over 30 years and he had Type 1 diabetes when I met him. Over the years the hypos have always been a problem. We are in our late seventies and my partner is blind and deaf.

I am being accused of something - I'm not sure exactly what but my partner has turned against me after one of his daughters said that I should have called an ambulance for him sooner than I did.

On Sunday evening he was ok and he put our meal on the table at about 9.0 pm, sat down and was immediately into a hypo. He couldn't eat much and couldn't check his blood sugar. He was very confused and I couldn't get the testing kit to work either. He kept falling asleep, and at some point I did manage to get him to take two glucose tablets (he hadn't given himself any insulin). Then his mobile rang and he answered it. I assumed it was a cold call as he kept saying "sorry?" as often cold callers are not clear, and he was clearly having some problems. He was on the phone for nearly ten minutes and then the call ended abruptly at 9.40. The landline rang and it was one of his daughters (No. 3) who said that No. 4 had been speaking to him and had rung for an ambulance! I was horrified because the implication was that I either was not there or else I was incompetent. I had asked him if he wanted an ambulance and he had said no. The outcome was that her ambulance was cancelled and after further tries with testing (he pushed me away), I called the ambulance myself and they arrived quickly about 10.30. His blood sugar was stubborn but after a glucose injection, and some snacks, he quickly came round and was chatting away while I gave him some toast and jam. The paramedics left at 1.30.

Yesterday, Tuesday, I urged John to ring No. 3 to tell her that he was ok and the good news he had just received about getting an appointment on Friday to have a pump fitted. I couldn't hear the conversation but heard my name mentioned several times. At the end of the conversation he looked stern and I asked him what had transpired. He asked me if I had called the ambulance and told me that No. 3 had said he should have had it much sooner. Both those daughters are also Type one and No. 3 is a nurse. I don't think either of them was aware that he was about to eat and was attempting to test. I am usually able to bring him round without the need for an ambulance and you have to try everything you can before getting one. We lost precious minutes with those calls. I suspect No. 4 was drunk when she rang (she has been having very recent marital problems), and she had had all day but left it until 9.30 to do so.

He is still looking grim and has accused me of controlling him. I suspect there is also some dementia also at play here. Am I to blame? I am not going to have anything to eat until this cloud is lifted off me. I have no-one to turn to.
 
So sorry to hear you are going through this

It's probably not the answer you want to hear but if unable to get glucose into him then yes I would've called an ambulance sooner, if starting to hypo at 9pm and the ambulance arriving at 10:30pm and you hadn't managed to get glucose into him then the outcome could have been far worse than it was, are these types of hypos regular? Where he can't/won't take glucose by mouth? If so have you ever asked about being prescribed a glucagon kit?

Have you sought some support? Maybe in the form of some home help to get you a bit of time away from it all (although I'm unsure in the current situation how that is working at the moment) a chat to your GP would help and they could suggest things along those lines

Don't feel too bad, it happened, the outcome wasn't too bad just try and move on and do things differently should it happen again

Your always welcome to come here to vent whenever you need to, we've all done it and we're a great support when people need it
xx
 
Can I suggest that you get in touch with whoever provides carer support in your area, and do it as a matter of some urgency. The circumstances you are in are complicated and obviously difficult and you are not "to blame". You need help in working your way through things and the local authority has a statutory obligation to provide that support for carers. I might add that the quality of provision varies considerably around the country. Hopefully in your area it will be at the better end of the spectrum.
 
I did get glucose into him but I was thwarted by him answering the phone instead of eating or taking more glucose. As it turned out, he wasn't getting much help from the glucose this time but neither of us was to know that.
 
Can I suggest that you get in touch with whoever provides carer support in your area, and do it as a matter of some urgency. The circumstances you are in are complicated and obviously difficult and you are not "to blame". You need help in working your way through things and the local authority has a statutory obligation to provide that support for carers. I might add that the quality of provision varies considerably around the country. Hopefully in your area it will be at the better end of the spectrum.
I did get glucose into him but I was thwarted by him answering the phone instead of eating or taking more glucose. As it turned out, he wasn't getting much help from the glucose this time but neither of us was to know that.
Thank you Docb. I don't know who provides carer support, so that will give me something to do. I think when he gets his pump things will be much better, but in the meantime fingers pointing at me don't help and I feel sick with it all.
 
If you google, Carers Support and your county council, you will get who you need to contact. Hopefully you can self refer in your area and that should speed things up.

I will confess a vested interest... I am a carer and volunteer for the organisation who provide carer support in my area and so I know a little about it. If your local system is half as good as ours then you will get some of the support you need.
 
I did get glucose into him but I was thwarted by him answering the phone instead of eating or taking more glucose. As it turned out, he wasn't getting much help from the glucose this time but neither of us was to know that.
In which case getting in touch with his diabetes team or GP to request a glucagon kit would be a wise idea even if it's for "just in case" I am not having a go at you but in certain instances calling for an ambulance is the best idea, especially as you couldn't get the meter to work so had no idea what his levels actually were, do you also have a spare back up meter? What insulins is he using? Has he (or you) performed a basal test recently to see if his insulin is needing adjusted? It may be a waste of time if he's transferring to a pump shortly but will be needed when on the pump too to change basal rates etc xx
 
If you google, Carers Support and your county council, you will get who you need to contact. Hopefully you can self refer in your area and that should speed things up.

I will confess a vested interest... I am a carer and volunteer for the organisation who provide carer support in my area and so I know a little about it. If your local system is half as good as ours then you will get some of the support you need.
I have done what you suggest, trying both counties that we border, and there is none. I will try and talk to the diabetic nurses when I get the chance. Thank you anyway.
 
Is the GP surgery aware you are a carer? My repeat prescription has something on it about letting them know if you are.
 
Well, I'm the only person that can care for him. I don't qualify for an allowance or anything, so perhaps it doesn't count. It's not as if he's bed-ridden or needs help to bathe etc. so I don't really know. My repeat prescription has an area for sending messages to the surgery but the service isn't available.
 
Hello @Johnsgirl
It sounds as if you are having a very difficult time, and I hope you have been able to find some help from the routes that have been suggested.
If not then it may be an idea to call the Diabetes UK help line 0345 123 2399. At least this will mean you can talk to somebody on a one to one basis.
 
Well, I'm the only person that can care for him. I don't qualify for an allowance or anything, so perhaps it doesn't count. It's not as if he's bed-ridden or needs help to bathe etc. so I don't really know. My repeat prescription has an area for sending messages to the surgery but the service isn't available.
If you are not designated as carer then perhaps you should get that organised. I don't mean for getting allowances but legally clarify your situation.
It might be wise to set up a power of attorney - best done long before it might be required. They are organised and then activated when needed. It seems as though there is some animosity and if you do not have things sorted out the situation might turn nasty. I have known of families who arrived and made a long time partner homeless taking everything from her and putting her out on the street without even her coat when their father died.
 
Have you thought about getting a Libre?
I am afraid this won't directly help with the relationships with your step-daughters(?) but will allow you to keep a closer eye on John's blood sugars to notice when they are falling before the get too low.
I know some of us may get a bit stubborn when our blood sugars are low so catching and reacting to the fall before we get to that stage is useful for all around us.
If you explain your concerns with John's diabetes team, they may prescribe them for him.
 
In which case getting in touch with his diabetes team or GP to request a glucagon kit would be a wise idea even if it's for "just in case" I am not having a go at you but in certain instances calling for an ambulance is the best idea, especially as you couldn't get the meter to work so had no idea what his levels actually were, do you also have a spare back up meter? What insulins is he using? Has he (or you) performed a basal test recently to see if his insulin is needing adjusted? It may be a waste of time if he's transferring to a pump shortly but will be needed when on the pump too to change basal rates etc xx
Yes - we have had glucagon kits in the past but they expired before there was a chance to use them. I have told him that next time he has a hypo I will call the ambulance straight away. It's ridiculous to say that, and not helpful to our stretched NHS services but if we were to get a repeat of Sunday - and who's to say whether it's a similar scenario? then at least I would be covered. He has been following the advice of his daughter and testing 8 times a day with the goal of getting a pump, as it has been a year since that was last mooted and when his insulin doses were reduced, and it was thought this might speed things up. I am sure it will help when they see his records on Friday. In the meantime, I'm not in a fit state to "care" for anyone now. His spare meter is at his workshop four miles away so he can't access it at all times. The paramedics said it was working. So yes - I did call for an ambulance but I would not normally need to do that while waiting for the glucose to take effect i.e half an hour. He has had worse episodes than this, where he has fallen down in the garden and after an hour I have managed, with the help of dextrose tablets, to get him on his feet and into the house. Sunday's episode was something else. Something new. I am not permitted to go with him to the hospital on Friday. Thanks for replying. I appreciate all the help I am getting today as a newbie on this forum.
 
I have done what you suggest, trying both counties that we border, and there is none. I will try and talk to the diabetic nurses when I get the chance. Thank you anyway.
Did you try ringing Social Services as they may be able to help or sign post you to support?
 
If you are not designated as carer then perhaps you should get that organised. I don't mean for getting allowances but legally clarify your situation.
It might be wise to set up a power of attorney - best done long before it might be required. They are organised and then activated when needed. It seems as though there is some animosity and if you do not have things sorted out the situation might turn nasty. I have known of families who arrived and made a long time partner homeless taking everything from her and putting her out on the street without even her coat when their father died.
I think that day is approaching but I am already being accused of trying to control him, which isn't true or I wouldn't have allowed him to take the phone call when he was struggling. I did think of snatching it off him to tell the caller to leave him alone - I didn't know it was a daughter. Not knowing exactly what has been said, I am afraid that something might happen but I do own half the house and more. Thank you for suggesting PoA; I didn't dare mention it to anyone as he has not been diagnosed with dementia. Being blind and deaf in itself is enough to make communication and fiddling with technology difficult. I really appreciate your taking time to reply. Thank you.
 
I think that day is approaching but I am already being accused of trying to control him, which isn't true or I wouldn't have allowed him to take the phone call when he was struggling. I did think of snatching it off him to tell the caller to leave him alone - I didn't know it was a daughter. Not knowing exactly what has been said, I am afraid that something might happen but I do own half the house and more. Thank you for suggesting PoA; I didn't dare mention it to anyone as he has not been diagnosed with dementia. Being blind and deaf in itself is enough to make communication and fiddling with technology difficult. I really appreciate your taking time to reply. Thank you.
If as you said he is blind and deaf how does get to the hospital and how do they communicate with him?
 
Did you try ringing Social Services as they may be able to help or sign post you to support?
I haven't had the chance. I need to make the call private and I have had to deal with the insurance of kitchen appliances today as the cold calls do not stop when things are awry, and there seems to be some kind of muddle that shouldn't exist when I believed I had taken over all the direct debits. I asked him if there were any more that he was paying a couple of weeks ago but got no reply. But yes, I was in touch with social services a few weeks ago when he was being particularly abusive but that line of communication seems to have closed. Thanks for your help.
 
Did you try ringing Social Services as they may be able to help or sign post you to support?

Social services can be very patchy. In most areas they have basically ceased to exist with all the things they used to do being farmed out. @Johnsgirl, I have sent you a private message (click on the envelope at the top of the screen) with a suggestion for you.
 
If as you said he is blind and deaf how does get to the hospital and how do they communicate with him?
I normally drive him to the hospital but this time, as the appointment is all day, they are sending an ambulance. He can hear loud people and people with lower voices. He has a modicum of sight in one eye but I think it is time to approach Moorfields again as they won't do the operation unless there is no sight left, and then it can be life-changing.
 
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