Needing support as a carer

[Johnsgirl]

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]

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]

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]

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]

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]

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]

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 or hesring 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)?

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]

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.

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]

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]

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]

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.

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]

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]

Thanks Docb,

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

 

[Johnsgirl]

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)?

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]

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]

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.

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]

Thanks for the update @Johnsgirl

Hope things get easier for you.

 

[Johnsgirl]

Thank you.

 

[Docb]

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]

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.