# Needing support as a carer



## Johnsgirl (Oct 21, 2020)

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.


----------



## Kaylz (Oct 21, 2020)

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


----------



## Docb (Oct 21, 2020)

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.


----------



## Johnsgirl (Oct 21, 2020)

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.


----------



## Johnsgirl (Oct 21, 2020)

Docb said:


> 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.





Johnsgirl said:


> 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.


----------



## Docb (Oct 21, 2020)

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.


----------



## Kaylz (Oct 21, 2020)

Johnsgirl said:


> 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


----------



## Johnsgirl (Oct 21, 2020)

Docb said:


> 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.


----------



## silentsquirrel (Oct 21, 2020)

Is the GP surgery aware you are a carer?  My repeat prescription has something on it about letting them know if you are.


----------



## Johnsgirl (Oct 21, 2020)

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.


----------



## Toucan (Oct 21, 2020)

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.


----------



## Drummer (Oct 21, 2020)

Johnsgirl said:


> 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.


----------



## helli (Oct 21, 2020)

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.


----------



## Johnsgirl (Oct 21, 2020)

Kaylz said:


> 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.


----------



## grovesy (Oct 21, 2020)

Johnsgirl said:


> 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?


----------



## Johnsgirl (Oct 21, 2020)

Drummer said:


> 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.


----------



## grovesy (Oct 21, 2020)

Johnsgirl said:


> 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?


----------



## Johnsgirl (Oct 21, 2020)

grovesy said:


> 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.


----------



## Docb (Oct 21, 2020)

grovesy said:


> 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.


----------



## Johnsgirl (Oct 21, 2020)

grovesy said:


> 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.


----------



## Johnsgirl (Oct 21, 2020)

Docb said:


> 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.


Thanks Docb - I will click the envelope.


----------



## Johnsgirl (Oct 21, 2020)

Toucan said:


> 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.


Hi Kay,  thanks - I may well do that when I can be alone.  Maggie


----------



## everydayupsanddowns (Oct 22, 2020)

Just catching up with the difficult time you are having @Johnsgirl

How much do you know about pump therapy? It sounds as if you have been heading in this direction for a while, and John’s nurse daughter sounds keen, but they can be a bit fiddly to maintain, and do need to be kept an eye on. The infusion set will need changing, and the reservoir will need filling every 3 days, additionally if the plan is to use continuous sensors to help protect against hypos, these also need changing and calibrating.

I just wanted to make sure you knew the practical ins and outs before making the switch, as I don’t believe there is a pump which is adapted for blind/deaf users, so some of the process (eg ensuring the reservoir has no bubbles in, and navigating the menu systems on the pump itself) may be easier done by someone without sight loss or hearing impairment?

I hope you are able to keep the lines of communication open with his daughters - is there any chance you could get together to talk things through (not sure if you are in part of the country under extra restrictions)?


----------



## SB2015 (Oct 22, 2020)

A late Welcome to the forum @Johnsgirl.  Sorry to read of the difficulties you are having.

Keep in touch and let us know the outcome of John’s forthcoming appointment  and ask any questions that arise.


----------



## everydayupsanddowns (Oct 22, 2020)

Johnsgirl said:


> Thanks Docb - I will click the envelope.



If you were finding the envelope hard to spot I’ve tweaked your account and it may now be appearing for you


----------



## Flower (Oct 22, 2020)

Hello @Johnsgirl welcome to the forum, I'm sorry to read the challenges you're having.

Is there any way you can go with him to the pump start day - probably not possible with Covid restrictions - or arrange to join in via Zoom so you know what's involved. As @everydayupsanddowns says a pump/reservoir/cannula is fiddly and does need ongoing tweaking to settings and insulin rates especially at the start of pump use. Two minds dealing with the general pump maintenance would be a good thing if at all possible. I'm partially sighted, blind in one eye and limited in the other and have got a good magnifying stand from the hospital low vision clinic that I use to fill pump reservoirs under so I stand a better chance of seeing air bubbles.

Do ask if there is a specific glucose meter that sends reading direct to the pump as I find that really useful and one less place I can make mistakes if I don't see the numbers clearly. I use a Medtronic pump with a Contour 2.4 meter than links directly to it.

Is he waiting for a vitrectomy or cataract operation? It seems very tough to make someone wait in that situation if something can be done to help. Sorry if that is absolutely nothing to do with it but I hope something can be done if possible. 

Wishing you well.


----------



## Johnsgirl (Oct 22, 2020)

everydayupsanddowns said:


> Just catching up with the difficult time you are having @Johnsgirl
> 
> How much do you know about pump therapy? It sounds as if you have been heading in this direction for a while, and John’s nurse daughter sounds keen, but they can be a bit fiddly to maintain, and do need to be kept an eye on. The infusion set will need changing, and the reservoir will need filling every 3 days, additionally if the plan is to use continuous sensors to help protect against hypos, these also need changing and calibrating.
> 
> ...


I didn't know any of that!  I doubt that it has been considered that I would be involved in maintaining the thing.  It is clear that John doesn't want me around any more, so he'll have to have a nurse whatever the scenario.  Thanks for the info.


----------



## Johnsgirl (Oct 22, 2020)

Flower said:


> Hello @Johnsgirl welcome to the forum, I'm sorry to read the challenges you're having.
> 
> Is there any way you can go with him to the pump start day - probably not possible with Covid restrictions - or arrange to join in via Zoom so you know what's involved. As @everydayupsanddowns says a pump/reservoir/cannula is fiddly and does need ongoing tweaking to settings and insulin rates especially at the start of pump use. Two minds dealing with the general pump maintenance would be a good thing if at all possible. I'm partially sighted, blind in one eye and limited in the other and have got a good magnifying stand from the hospital low vision clinic that I use to fill pump reservoirs under so I stand a better chance of seeing air bubbles.
> 
> ...


Hi Flower,  thanks for understanding the situation.  I have been told that I will not be needed tomorrow.  The appointment is all day and so hospital transport will be sent, presumably because the hospital doesn't encourage "hangers on".  Perhaps they haven't taken into account his blindness.  His daughter stressed that he should get a Freestyle Libre but whether the hospital will offer that is up to them.  Daughter is in London: hospital in Suffolk.  It's clear to me that his sight is far worse than he would admit.  He has glaucoma.  I am in the dark a lot these days about what is going on.  I only find things out by sneaking around.

It is Moorfields policy not to operate on eyes that have any sight left in them, particularly as the operations were in the early stages when we went there some years back, and now there's Covid to hold up almost everything.  Perhaps the pump start day will spark a new investigation.  I got him a large flat magnifier which e never uses, preferring his hand held one with a light on it.  To use the large one he would have to make a frame.  Thanks for taking the trouble to write all of this.  Maggie


----------



## Johnsgirl (Oct 25, 2020)

helli said:


> 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.


He got the Libre fitted on Friday.  Unfortunately he says that on Sunday I should have called an ambulance as soon as he went into the hypo and that he doesn't trust me anymore.  When the ambulance brought him home from having is Libre fitted, they arrived so late that he was having a hypo.  I sorted him out but should I have asked them to turn round and take him back?  The clinic closed at 5.0;  there is no food after 6.0 and the ambulance team was coping with everything including poor satnav in a new vehicle, so it was well after 8.0 when they arrived home.


----------



## Johnsgirl (Oct 25, 2020)

Johnsgirl said:


> I didn't know any of that!  I doubt that it has been considered that I would be involved in maintaining the thing.  It is clear that John doesn't want me around any more, so he'll have to have a nurse whatever the scenario.  Thanks for the info.


He has not had a pump fitted;  he has a monitor which is really what he needs I think.


----------



## Johnsgirl (Nov 12, 2020)

Hi Docb, I wanted to update you but I've had unbelievable trouble getting back onto the site.  It seems they stopped recognising me but have now changed my password and got into the thread.  

I have been in touch with CarersFirst (Essex) and am waiting for a phone call.  I had an appointment with my GP and asked if I was John's registered carer, and she said No.  We then went back to the Diabetic Clinic and I was given loads of helpful literature, and was alerted to the fact that I should have been there at the first session but my partner had told the nurses that I was doing something else that day!  (In Lockdown?  Really?).  The Freestyle Libre is great.  We had a palaver changing the sensor after two weeks and I've told him he shouldn't wait until he's "going low" to do it.  I found that YouTube had lots of help but convincing him took so long, when all he had to do was stick it on his arm and press down.  

I understand that he is now rewarding one of his mischief-making daughters by taking her on holiday on my birthday.  My GP isn't taking John's behaviour seriously and I'm hoping CarersFirst might be able to help, or perhaps the Diabetic nurses, who as well as the ambulance crew, picked up on the signs of dementia.  She isn't taking my health conditions seriously either and am considering changing to a GP who is more tuned in.  I may need to go for surgery at some point, so who's going to care for John then?  Will he learn how to order groceries online?  I hope CarersFirst ring me soon - the issue of PoA needs to be addressed before it is taken out of my hands.


Docb said:


> 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.


----------



## Docb (Nov 12, 2020)

Thanks for the update and sorry you have had access problems.  

If CarersFirst(Essex) are on the ball then they should get you registered as John's carer and should carry out a carers assessment, part of which will be to think through what happens if for any reason you cannot carry out your caring role. 
If you think that things are not moving fast enough, just give them another call.  No need to be pushy or anything like that, just tell them that things are getting more difficult and ask them when they expect to make contact.  I know that current restrictions have made carer service provision more difficult but I know the local providers have found work arounds and are operating as normally as they can be.  Hopefully CarersFirst(Essex) have got themselves organised.


----------



## Johnsgirl (Nov 12, 2020)

Thanks Docb,

I emailed them and got a message that they will ring me today or tomorrow.  At my wits end now.


----------



## Johnsgirl (Nov 12, 2020)

everydayupsanddowns said:


> Just catching up with the difficult time you are having @Johnsgirl
> 
> How much do you know about pump therapy? It sounds as if you have been heading in this direction for a while, and John’s nurse daughter sounds keen, but they can be a bit fiddly to maintain, and do need to be kept an eye on. The infusion set will need changing, and the reservoir will need filling every 3 days, additionally if the plan is to use continuous sensors to help protect against hypos, these also need changing and calibrating.
> 
> ...


Thanks, Everydayupsanddowns,  He has had a Freestyle Libre fitted which is great.  Everything comes with its downsides, so he struggled to change it after two weeks and today he's been struggling to link it to his computer.  He really doesn't want me to help because then he'd have nothing to complain about.  So  no pump planned, thank goodness.

Sorry it's taken a while to get back to you;  it's been an ongoing struggle and wasn't able to access the site again until today as I wasn't recognised.  There is no was the lines of communication can be kept open because he has five and none of them live close.  Also, we are shielding in North  Essex.  The nearest, the nurse, is an hour's drive away but she is busy doing research and it wouldn't be a two way communication anyway as the youngest three daughters are intent on damning me.  I'm just counting on my guardian angel taking care of me, since there's no-one else.


----------



## Drummer (Nov 12, 2020)

Do keep a record of all that goes on, somewhere it can't be vanished away.
If you need to get things done, tell as many people as possible that it needs to be sorted out, and don't worry about them getting back to you - let them sort it out, just update them. If your partner can't manage to change the sensor and link it up, then tell other people that he needs help and they ought to get involved to give assistance. 
Do not just sit back - put yourself forward as the one who is trying to be involved and caring in this rather sad situation.
Maybe contact anyone involved in his medical care and ask them about information sharing - if you tell them that he is being deliberately obstructive as his ability to cope alone deteriorates you might get their help in becoming registered as carer and be kept in the loop in future. Ask if anyone can come to assist John learn to manage the changeover, as you aren't allowed to help at the time.
If you can get through to John you might ask, gently, what his plans are as he needs more and more help. If you get any response from the daughters, ask them what they intend to do in the future.
My own sister in law got quite a shock when she insisted that her mother move to be closer to her, to where we could no longer be part of her care.


----------



## Johnsgirl (Nov 12, 2020)

Drummer said:


> Do keep a record of all that goes on, somewhere it can't be vanished away.
> If you need to get things done, tell as many people as possible that it needs to be sorted out, and don't worry about them getting back to you - let them sort it out, just update them. If your partner can't manage to change the sensor and link it up, then tell other people that he needs help and they ought to get involved to give assistance.
> Do not just sit back - put yourself forward as the one who is trying to be involved and caring in this rather sad situation.
> Maybe contact anyone involved in his medical care and ask them about information sharing - if you tell them that he is being deliberately obstructive as his ability to cope alone deteriorates you might get their help in becoming registered as carer and be kept in the loop in future. Ask if anyone can come to assist John learn to manage the changeover, as you aren't allowed to help at the time.
> ...


Yes, indeed.  Thank you Drummer.  I have started to keep a record on my computer, though I have sent various versions off to friends so that I can avoid having to go through it over and over again when we are speaking.  Not different versions - just what happened first and not what happened at the hospital later(there's only so much people can take!)  I will attempt to make this a bit tidier and daily, but am having computer problems with my documents, and while I am waiting for phone calls, I can't get out to the computer shop (I'm meant to be shielding anyway).  

With changing the sensor, I had figured it out, and he had done what he was supposed to do by the time the nurse got back to us.  It is not that I need more information but the other people involved need it from me because he hasn't been honest with them.  I think they recognise that I am trying to be involved and caring and also that he is being obstructive.  Everyone who has any experience of dementia says that his behaviour is symptomatic but our GP won't take it seriously.  I've read that the sooner you get medication the better.  It's dealing with this on my own that is the killer as I have no family to speak of.

I heard his younger daughter on the phone from Singapore (word gets around, doesn't it?) and she was urging him to sell our house ASAP and move closer to family i.e. Southampton.  She was saying things like "I don't want you ....." didn't hear the rest of these sentences.  He left me once to go and live with her on the Isle of Wight and after a few weeks she and her husband couldn't take any more of him and he came back to me.  I made the decision two years ago to have nothing more to do with her because every time I tried to build bridges I got a slapped face and the rudeness, inconsiderateness and pushing around is not how I wish to be treated.  Like her father, she is a control freak - more so.

What is the difference between being a carer and being a registered carer?

I got a call from my physiotherapist yesterday to say that my MRI scan showed recent changes to my bones and he has sent the report to my haematology team.  Not entirely sure why, or whether he would send it to my GP as well, but anyway, there is a possibility of surgery at some point, which means I would be out of action for quite a while.  I just feel so hurt that while I need support, instead, I am being accused and it is affecting my health.

Your final sentence rings so true!  Sorry for the rant, but I feel you really understand what's going on.  Thanks,  Maggie


----------



## everydayupsanddowns (Nov 12, 2020)

Thanks for the update @Johnsgirl 

Hope things get easier for you.


----------



## Johnsgirl (Nov 12, 2020)

Thank you.


----------



## Docb (Nov 12, 2020)

Johnsgirl said:


> What is the difference between being a carer and being a registered carer?



Good question.  Maybe I should have said recognised carer because I do not think there is a register as such.  It should come from your contact with carers services.  They will decide whether a carers assessment is appropriate for you, and from what you have said I would be surprised if it is not, and this will be done and entered into their system which will recognise the fact that you are a carer.  It will be reviewed on a regular basis.  The GP should be told about it so that it can be added your, and his, notes and should help in contacts with the surgery.

When it comes to powers of attorney, I know a little about that having set them up for myself because of my concern for what would happen to the person I care for if I became incapacitated for some reason. It would allow the people I have appointed as attorneys to take over my affairs quickly and make sure things could be kept going. It was all very straightforward.  I think that your situation is more complicated and you need to speak to somebody who can advise you properly and confidentially. I am not sure that a public forum is a good place to discuss such things. The citizens advice bureau may be a good place to start.  One thing I do know is that the Court of Protection (the body that oversees PofA matters) takes a dim view of coercion in these matters.  

You may feel at your wits end but there will be a way forward and when you find it things will clear.  Getting the system to work for you is what I would recommend and you have already started on that.  It might take a little time, but you will get there.


----------



## Drummer (Nov 12, 2020)

Are you certain it is 'our house'?
Half a century ago now I heard of an elderly man who's long standing partner was thrown out of their flat with nothing when two of his daughters turned up unannounced. She was unable to recover anything - not even her clothes or handbag as she was accused of stealing his money. They even tried to take money out of her bank account. Luckily she was well known to the bank clerk, and had contacted the bank to alert them to the situation.
With things as they are now I doubt that you could get power of attorney easily, but of all the various places involved know that you are looking after him, and that they ought to organise appointments, medication and updates with both of you in order to keep him safe.


----------



## Docb (Nov 13, 2020)

@Drummer, things are very different now and anecdotes about something that might have happened 50 years ago are not relevant.  

I am no expert and have no qualifications in this area.  As I understand it there are two basic forms of power of attorney.  

First, if somebody is considered to be incapacitated then somebody can apply to the Court of Protection to be granted power of attorney to handle their affairs.  This is only granted after a rigorous examination of all aspects of the case and involves the use of lawyers.  You cannot simply turn up and demand it.  I does not work that way.

Second is the Lasting Power of Attorney.  This is where somebody who is not incapacitated decides that it would be wise to make arrangements so that if they did become incapacitated somebody competent of their choice would be able to handle their affairs. This is a straightforward process which does contain protections for all interested parties. You do not need a lawyer.  It is what I did.


----------



## Johnsgirl (Nov 13, 2020)

Docb said:


> Good question.  Maybe I should have said recognised carer because I do not think there is a register as such.  It should come from your contact with carers services.  They will decide whether a carers assessment is appropriate for you, and from what you have said I would be surprised if it is not, and this will be done and entered into their system which will recognise the fact that you are a carer.  It will be reviewed on a regular basis.  The GP should be told about it so that it can be added your, and his, notes and should help in contacts with the surgery.
> 
> When it comes to powers of attorney, I know a little about that having set them up for myself because of my concern for what would happen to the person I care for if I became incapacitated for some reason. It would allow the people I have appointed as attorneys to take over my affairs quickly and make sure things could be kept going. It was all very straightforward.  I think that your situation is more complicated and you need to speak to somebody who can advise you properly and confidentially. I am not sure that a public forum is a good place to discuss such things. The citizens advice bureau may be a good place to start.  One thing I do know is that the Court of Protection (the body that oversees PofA matters) takes a dim view of coercion in these matters.
> 
> You may feel at your wits end but there will be a way forward and when you find it things will clear.  Getting the system to work for you is what I would recommend and you have already started on that.  It might take a little time, but you will get there.


Hi Docb,
I had a call from CarersFirst today and I had PoA on my list of questions but they brought it up.  I will be getting another call next week to discuss an assessment and see what else can be done in general to help.  I also had a call from my physio to show me the MRI picture of my spine, which showed three bones that had changed size and shape.  He said this was caused by my blood cancer.  Onwards...


----------



## Johnsgirl (Nov 13, 2020)

Drummer said:


> Are you certain it is 'our house'?
> Half a century ago now I heard of an elderly man who's long standing partner was thrown out of their flat with nothing when two of his daughters turned up unannounced. She was unable to recover anything - not even her clothes or handbag as she was accused of stealing his money. They even tried to take money out of her bank account. Luckily she was well known to the bank clerk, and had contacted the bank to alert them to the situation.
> With things as they are now I doubt that you could get power of attorney easily, but of all the various places involved know that you are looking after him, and that they ought to organise appointments, medication and updates with both of you in order to keep him safe.


Hi Drummer,  I just picked up your message.  Yes - the house is in both our names and I have paid out more than half over the years.  I had heard that story and don't want it to happen to me as I have no-one.  At this moment he's just allowed himself to go into a hypo - 2.2.  I've brought his blood sugar up higher than it should be but it's coming down. Now (20.40) he's just put his coat and shoes on and left the house with a torch but without a word.


----------



## everydayupsanddowns (Nov 13, 2020)

Sorry to hear about your husband’s hypo @Johnsgirl - sounds nasty!

Does he leave the house late like this often? Any idea where he might have gone? Might be still be in a state of confusion because of low blood glucose?


----------



## Johnsgirl (Nov 13, 2020)

No, he doesn't do this.  He hasn't taken his phone but he has taken his Libre.  His blood was up to 10 just before he left, going down.  I have no idea where he's gone.  It's pitch black outside and narrow roads.  At least at this time of night there won't be much traffic.  He's angry with me because I didn't pick up his pain killer prescription.  He asked for some of mine, which were actually his, but he didn't take them.  I had got my long awaited first phone call from CarersFirst and it slipped my mind, but I don't believe it's urgent as he hasn't been taking the pain killers he already has.  I am taking him out tomorrow and I thought I would do it while I was out in the car.  

I don't think he's in a state of confusion because he's just been commenting on the events of Coronation Street.  I did the same thing a few nights ago and went for a drive by myself.  Apparently, we have no food in the house (not true) and while I am shielding, I should "get off my backside and go to Tesco instead of playing on the computer all the time".  I asked him why he couldn't remember that I was shielding.  He was fuming when I told him I couldn't get a slot until Tuesday but I have managed to amend that to Sunday.  There is always (oh, he's back) standby foods in the house.  You just need to be a bit creative.


----------



## Docb (Nov 13, 2020)

Hi @Johnsgirl.  Great that you have had a positive first contact with the carer services.  If the follow up goes well and an assessment is done then that should open up the avenues to get the support you need.    As you say, onwards and onwards and dont give up.


----------



## Drummer (Nov 14, 2020)

Oh - I'm surprised if the situation I knew of was ever made public - I was living in Southsea, Hampshire and the woman was able to go to the home of someone we knew quite well due to our being on the folk club scene at the time. She was able to re-establish a life for herself quite quickly, and came back to the folk clubs, but we never saw the man again. 
Glad to read that he's back - if it is anything like here, the nights are a lot colder now and so it is far more comfortable to be indoors.
A phrase we use to use a lot with my mother in law was 'Don't worry, it is all arranged.' rather than trying to give details of the day and time when things were to be done. It seemed to help as her confusion and agitation increased.


----------



## Johnsgirl (Nov 14, 2020)

Drummer said:


> Oh - I'm surprised if the situation I knew of was ever made public - I was living in Southsea, Hampshire and the woman was able to go to the home of someone we knew quite well due to our being on the folk club scene at the time. She was able to re-establish a life for herself quite quickly, and came back to the folk clubs, but we never saw the man again.
> Glad to read that he's back - if it is anything like here, the nights are a lot colder now and so it is far more comfortable to be indoors.
> A phrase we use to use a lot with my mother in law was 'Don't worry, it is all arranged.' rather than trying to give details of the day and time when things were to be done. It seemed to help as her confusion and agitation increased.


Perhaps you have written it before and I read it.

Yes he went out in the dark last night, having had a massive increase of sugars.  When he came in he said "It's warmer out there than it is in this house!"  Where we live it is quite mild but the house isn't cold.  I had just turned the heater off. Before he went out I had given him sugary tea, two digestive biscuits and a slice of his homemade bread with lemoncurd.  On top of the dextrose he had taken.  His blood sugar went soaring to a worrying height and I was afraid of the repercussions.  However, his mood had improved considerably and he had his meal and gave himself 12 units of insulin.  By the time he went to bed everything was normal but I had to stay up into the early hours to make sure, only to have him go upstairs to recharge the Libre reader and eventually, when I decided to go to bed, I found him doing whatever it is he does on his computer.  Totally unconcerned with my yawning.  When my painkillers have kicked in I will go and get his prescription.  We are not at the stage of you and your MIL;  he meticulously keeps a calendar in front of the TV that has all his appointments etc on it.  His problems are keeping track of time and having any consideration for anyone else.  I have my prescriptions delivered but he refuses.  I'm thinking of taking that into my own hands;  things can't get any worse, and if I don't have to drive to the nearest village pharmacy it's going to make my life easier.


----------



## daducky88 (Dec 20, 2020)

Johnsgirl said:


> Hi Docb, I wanted to update you but I've had unbelievable trouble getting back onto the site.  It seems they stopped recognising me but have now changed my password and got into the thread.
> 
> I have been in touch with CarersFirst (Essex) and am waiting for a phone call.  I had an appointment with my GP and asked if I was John's registered carer, and she said No.  We then went back to the Diabetic Clinic and I was given loads of helpful literature, and was alerted to the fact that I should have been there at the first session but my partner had told the nurses that I was doing something else that day!  (In Lockdown?  Really?).  The Freestyle Libre is great.  We had a palaver changing the sensor after two weeks and I've told him he shouldn't wait until he's "going low" to do it.  I found that YouTube had lots of help but convincing him took so long, when all he had to do was stick it on his arm and press down.
> 
> I understand that he is now rewarding one of his mischief-making daughters by taking her on holiday on my birthday.  My GP isn't taking John's behaviour seriously and I'm hoping CarersFirst might be able to help, or perhaps the Diabetic nurses, who as well as the ambulance crew, picked up on the signs of dementia.  She isn't taking my health conditions seriously either and am considering changing to a GP who is more tuned in.  I may need to go for surgery at some point, so who's going to care for John then?  Will he learn how to order groceries online?  I hope CarersFirst ring me soon - the issue of PoA needs to be addressed before it is taken out of my hands.



God, that all.sounds very complicated.  Good luck to you and your Dad.  You're good un.


----------



## daducky88 (Dec 20, 2020)

Johnsgirl said:


> Hi Docb,
> I had a call from CarersFirst today and I had PoA on my list of questions but they brought it up.  I will be getting another call next week to discuss an assessment and see what else can be done in general to help.  I also had a call from my physio to show me the MRI picture of my spine, which showed three bones that had changed size and shape.  He said this was caused by my blood cancer.  Onwards...


:'-(


----------



## Johnsgirl (Dec 20, 2020)

Hi all, I'm still here, still on a rollercoaster.  It seems most of my partner's rants are either when his blood sugar is low (no surprise there) and also when he is high, though he shows the reading to me as evidence that what he is saying is not caused by diabetes.  Last time, he had been speaking to mischief-making daughter on the phone.  He started a rant and said I wanted him dead.  Next time he says that, I will ask for evidence.  For now my best defense is to "button it" and "ride out the storm".  That works but it is hard to do.  It has also been proved that my partner's perception of high pitch needs hearing aids but as our GP is on leave, he is leaving speaking to her until New Year.  It would be good to be able to communicate properly when things are somewhat calm, because his not being able to understand what I am saying only makes things worse.  

My MRI shows I have four compression fractures.  I spoke to GP two days ago and he says they can heal but I think they started 18 months ago, and I now have a cracked rib (probably) to add to my pain.  He has prescribed something to help strengthen my old bones.  Well, Christmas is not going to be the same for anyone, is it?  Make the best of it in whatever way you can, friends.


----------



## daducky88 (Dec 20, 2020)

Johnsgirl said:


> Hi all, I'm still here, still on a rollercoaster.  It seems most of my partner's rants are either when his blood sugar is low (no surprise there) and also when he is high, though he shows the reading to me as evidence that what he is saying is not caused by diabetes.  Last time, he had been speaking to mischief-making daughter on the phone.  He started a rant and said I wanted him dead.  Next time he says that, I will ask for evidence.  For now my best defense is to "button it" and "ride out the storm".  That works but it is hard to do.  It has also been proved that my partner's perception of high pitch needs hearing aids but as our GP is on leave, he is leaving speaking to her until New Year.  It would be good to be able to communicate properly when things are somewhat calm, because his not being able to understand what I am saying only makes things worse.
> 
> My MRI shows I have four compression fractures.  I spoke to GP two days ago and he says they can heal but I think they started 18 months ago, and I now have a cracked rib (probably) to add to my pain.  He has prescribed something to help strengthen my old bones.  Well, Christmas is not going to be the same for anyone, is it?  Make the best of it in whatever way you can, friends.


Do you need external agency support?


----------



## daducky88 (Dec 20, 2020)

I guess what the carer's first is about isnt it.  Heres to next week or is this week now.


----------



## Johnsgirl (Dec 20, 2020)

Yes, I do, but it's not the end of the world if the house gets dirty, is it?  I'm supposed to have contacted a company who can supply me with some help but I think it's going to be hard because of us living in the sticks.  Also, expensive and I'm not sure if I can get any financial help.  I have a short list of companies to phone but it's the wrong time of year, and someone is ringing me on Wednesday to see how I've been getting on.  To be honest, I haven't had much time to myself in the last week or so.  Thanks for asking.


----------



## daducky88 (Dec 20, 2020)

Johnsgirl said:


> Yes, I do, but it's not the end of the world if the house gets dirty, is it?  I'm supposed to have contacted a company who can supply me with some help but I think it's going to be hard because of us living in the sticks.  Also, expensive and I'm not sure if I can get any financial help.  I have a short list of companies to phone but it's the wrong time of year, and someone is ringing me on Wednesday to see how I've been getting on.  To be honest, I haven't had much time to myself in the last week or so.  Thanks for asking.


Well a little bit of dirt helps keep the immune system primed i tell myself ':-o.  I hope you find some sort of solution anyway even if deciding what has to slide.


----------



## Johnsgirl (Dec 20, 2020)

Yes - it's a case of can I do anything today?  If so, what, and what do I need to do before I can do it?  I've just had a shower, so the floor will have to wait a while.  I think I can clean the hob.  Thank you for your understanding, daducky.  Hope you have as good a Christmas as possible.  Tomorrow's the solstice.  YAY!


----------



## everydayupsanddowns (Dec 21, 2020)

Be kind to yourself @Johnsgirl 

Hope you can get some carer’s support in place in the New Year.

Hope you have a peaceful and happy Christmas


----------



## Johnsgirl (Dec 21, 2020)

Thank you everydayupsanddowns - you too.


----------



## daducky88 (Jan 9, 2021)

Johnsgirl said:


> Yes - it's a case of can I do anything today?  If so, what, and what do I need to do before I can do it?  I've just had a shower, so the floor will have to wait a while.  I think I can clean the hob.  Thank you for your understanding, daducky.  Hope you have as good a Christmas as possible.  Tomorrow's the solstice.  YAY!


No sweat, JG.  Christmas was quiet for me shhhhh.....  ButI hope your Christmas was OK..
Did you get a dance in around the patio in morris gear for the solstice?  I seen morris men in a few in the countryside pubs now and then and also surprisingly but nicely in Borough market in London.  They attracted quite a crowd. Hey!  But I haven't seen any for a while.


----------



## Johnsgirl (Jan 10, 2021)

Wish I was able to dance!  Wish I had clean decking to dance on!  I haven't been anywhere for a year and wasn't aware the morris men were dancing at this season.  But I do feel that the solstice is something that people from all or no faiths can celebrate because it is a tangible sign of better things to come.  Better things for me, being learning how to deal with the unpleasant things that come my way.  I am becoming Teflon.  Happy New Year to you!


----------



## everydayupsanddowns (Jan 10, 2021)

Happy new year to you too @Johnsgirl 

Bring on the lighter days and fingers crossed it won’t be long before we see some effect from the vaccinations and easing of the burden on the healthcare system such that restrictions can start to lift.


----------

