My partner is 82 and a Type 1 Diabetic. He came out of hospital on Xmas Eve, having had a serious diabetic episode. He says the house is "bloody freezing". It's a small cottage, and I have an oil-filled radiator and an air-to-air pump that heats our usual living space really well, and the room keeps the heat in because I got the walls insulated a little while ago. So - not always but very often - he's cold when others (not just me) are warm. He won't put an extra layer on but he will sit in his coat with the hood up, shivering. He sleeps all night and most of the day, often waking from a bad dream or hallucination.
I have told him he should get his thyroid checked, but his GP is the one who tried to diagnose me and prescribe for me as hypothyroid, when I have no symptoms and my private blood tests will take some unraveling, which I doubt anyone in the surgery is likely to be interested in.
No-one in the medical world seems interested, mainly because they only hear the story he tells them. I've tried but they don't seem to understand my concerns.
He's just told me to leave and thinks he can look after himself. I'm not allowed to speak - he's so full of accusations.
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MaggieSylvie
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Thanks, SlowDragon, I wish I could email the surgery but that's not possible. I was there last week with him at his appointment and I stressed that he was asleep all the time but I think his GP dismissed it as an exaggeration. I don't think she will take kindly to my requesting those tests (some vitamin ones will have been done).
wonder whether I could just ask reception to request the tests. Then, of course, I will have to face the wrath of my partner when he finds out I have taken these steps. I think so far that diabetes has always been blamed for everything, but basically I am living with a man who isn't there. I'll just have to check for other symptoms to enable the request to be taken seriously. Thanks for your help.
Hi Maggie, You said in a previous post that John had had covid not so long ago and I wonder whether this still could be affecting him as I've heard from others who are older and with medical issues that it took them a good 3 months before they felt anywhere near normal again. Perhaps if things don't improve you could possibly ask Age Concern for their help as you could probably do with some support of some description as it can't be at all easy dealing with this situation on your own. Thinking of you!
Thank you so much, Delgor! I hadn't thought of all this. We have young Africans coming to us, saying they are John's carer and they don't stay long. To be his carer, you'd have to sleep with him, and afterwards, he wouldn't know you had done anything, least of all saved his life. Re the Covid, if he hadn't tested positive on entering HDU, we wouldn't have known. His cough has pretty much gone and he doesn't have any other symptoms. As you say, it is difficult dealing with this on my own, although Blind Veterans have been helpful in the past. I think Age UK have as well, but I didn't even remember that John had been in hospital in October - which wasn't long ago - or what he went in with. I suppose that's just a symptom of how much his condition is ruling my life, that I forget. When I can get the phones to work again, I will give Age UK a ring. My dear neighbour may also offer me some support, even though he has smashed up one of her plates this week (the second one). Thank you for thinking of me.🤗
I just wanted to pop on and say just because he's unwell doesn't mean you have to put up with his horrible behaviour.
Being unwell is not his fault and not something he can control but how he manages his behaviour IS.
At best he's being inconsiderate by refusing to see a doctor about his body temperature issue and worst ... Well...
Reach out for all the support you can. Living with an aggressive adult in the house that is actively making life difficult for you is mentally very challenging.
Hi Witchinghour, a challenge indeed. So pleased to see your support through the sentence "Being unwell doesn't mean I have to put up with his behaviour". No-one else sees the behaviour, at least, not the name calling etc. I just have to get on and do what needs doing. And try to get to bed before 4 am.
Is this why I am shaking and twitching? or is it something I need to ask my doctor about?
Gently, I would recommend speaking to your doctor about your partner's behaviour as soon as you can. Be frank and honest. They will be able to sign post you to services. ♥️
Sending a big hug first and foremost, not that that’s a lot of help. Still, I think you could use one so here it is: {{{hug}}} Xx
I think it’s probably not going to be straightforward to figure out what’s going on here. It could be his thyroid but equally, his diabetes is probably causing all sorts of secondary issues. And there may be something else entirely going on.
What does come across is that *you* need support—never mind your husband. You mentioned not being able to get to bed until 4am sometimes—that’s asking far too much of you and I wonder whether those putting his care package in place (such as it is) have realised it’s nowhere near enough and that you don’t have support?
Did you know that you can ask for a carer’s assessment? I don’t know which county you live in—each county has its own arrangements for adult social care but if you Google the name of your county council along with the words “carer assessment” you should find it. This is by no means about criticising you—you are in a position we’d all find nigh on impossible to manage. When my husband had terminal cancer there were 2 half hour “care” visits a day and the hours on my own trying to cope in between seemed interminable—it very nearly broke me and if it had gone on for many weeks I think it might have done.
Your husband having lost all that weight is going to have a bearing on how cold he feels (I read your last post on another forum here). But the not wanting to do very much to help himself (like wear more clothes!) is only making things worse isn’t it. What’s that all about??
You said you can’t email the GP surgery to express your concerns—how about going old school and writing them a letter? I think it often helps loads to provide your concerns in writing because it’s a lot harder for them to ignore it! You could hand it to the receptionist to pass on to his doctor next time you go in (or post it with tracked delivery so they can’t say they didn’t receive it!).
Thanks for the hug, Jazz, I need that. You're absolutely right - losing all that weight will have a bearing on how he feels the cold. It might be to do with extra layers (nice warm ones) have to do with their being gifts from me (he came back from the holiday without a lovely warm sweater that he loved - don't know what happened to it). He says I'm trying to control him with the gifts I give him. He doesn't give me anything, not for birthday or Christmas, so perhaps he feels guilty without being aware of it. I have proved to him how wearing three layers makes all the difference; it could be that once he is downstairs (with two layers) he doesn't want to go upstairs, as he sees it, unnecessarily. So he just reaches for his big puffer jacket.
I have never had a reply from the surgery when I have written a letter, but that is a good idea of yours to write to my GP. I think it would be a good idea to send a copy to his own GP. She prescribed me Levothyroxine a year (?) ago but I have no symptoms, and that is why I left her, so it's a delicate subject. There are so many things to address!
My not getting to bed until 4 am is my fault - or perhaps it is a psychological reaction.
I can well understand how you felt waiting for carers to come and help. I "looked after" my mum when she was struggling with cancer in her last few months, and it was so good to have someone you could talk to. He doesn't have to behave this way but how do I stop him? He has so much hatred and says that when people come to the house I want all the attention. That's not true at all, but I often have to answer for him because his processing time is so slow, whether that's because of his deafness or something in his brain. Sometimes, questions are directed to me - or am I wrong? Gaslighting going on as well. I think there should be an assessment of that. We are waiting for a hearing test. Waiting, waiting.
My not getting to bed until 4 am is my fault - or perhaps it is a psychological reaction.
Ah, it has a name that—revenge bedtime procrastination (my son was telling me about how he’d found an article on it a few weeks ago. We both do it!). It’s when you don’t want to go to bed even though you should, because you’ve finally got some “you” time to chill and relax a bit and going to bed just means the morning is going to come around even sooner and it’ll be time to do it all again…
Oof, that’s a difficult one, regarding his anger, you talking for him (because otherwise it really would take too long!), everyone addressing questions to you and not him etc. You can see how that would irritate him—but equally, he really shouldn’t be taking it out on you and it’s really unfair of him to do so. Especially as it sounds like you’re exhausting yourself to keep him going. I’m not surprised you’re shaking and twitching.
As for the “throw him out” comment—honestly, how unhelpful. I get that they (was it a doctor who said that???) thought they were being funny, but honestly, what a crass thing to say.
I think you need more help. Even if that’s a day each week at a day centre for example, to give you a bit of a break (and him a change of scenary!).
I think, write the letter. Get a carer’s assessment. And even maybe make a doctor’s appointment for yourself, to explain to your doctor how hard this is for you and how awful his behaviour is. (Because it is. Looking after someone who needs constant care is one thing. Looking after someone being incredibly aggressive is quite another.). You deserve better. ❤️
My new doctor said "throw him out". I had been going online to find somewhere to live but things have changed financially somewhat since then, but I am tempted to start again. First, I have to return some items I ordered that might have cheered me up but didn't, and I have to find a receipt at the bottom of the paper recycling to back up a lifetime guarantee of an oven plate. I haven't managed to reach the cord of the bathroom light, so it remains switched on until I can get someone taller to have a look. There are all these things around the house that I need outside help with that takes me hours of time online looking for someone local (I'm in the sticks so some people won't come this far). Having someone to talk to might produce tears and am not sure that will help anything. I am pushing all that "stuff" down and not facing it.
I wouldn't go to a day centre or a women's institute. I have friends - but not sure I am "allowed" out. Even going shopping on my own produces a reaction. Why should I have to ask permission? He's preparing vegetables for dinner tonight, so he is, as he says, capable of that. What he is not aware of is the need for someone to be with him night and day in case he fails to take care of his blood sugar. He's very stubborn and wants to do what he wants to do and has no sense of the passing of time.
Thank you, Jazz for your warmth, understanding and advice. ❤️
Jazz, what could anyone possibly do to support me? It's not as if I'm overworked or forced to spend long hours on anything. I suppose it's my own fault for not gathering people around me. I have got some, but they are not going to want to listen to my woes for long and if they visit, they won't see anything.
No, this is NOT your fault. Stop that. Please? xx You’re doing what many of us do in trying to take it all on yourself. You’ve probably been watering down the truth of how difficult it’s been for quite a while so it’s going to feel almost wrong to tell it like it is—but please try, ok?
This is real and it’s exhausting. As for the help you might get offered, that’s going to depend on what’s available in your area but there will be something. xx
Do you have any support for yourself? You are in a challenging situation trying to help a partner that doesn't want to be helped.
From personal experience I do understand how difficult it is to be a voluntary carer for a family member. You need to look after yourself and get at the minimum some emotional support and also help with the practical and health issues that he is dealing with and also indirectly that will be affecting you too.
You mention carers coming in so did he have an assessment of his care needs before leaving hospital? What do they do for him when they visit? Is it getting him out of bed and ready for the day and getting him in bed at night time? Or is it more social support just a chat to see how he is?
They should be wearing ID often on a lanyard around their neck or on a badge pinned to their person.
Blind veterans are an organisation I'm aware of and it would be useful to get in contact with them again. There are others but I've got to go out so will add them later.
Hi Hedgeree, No I don't really have support for myself but Blind Veterans are there for me in the background. I don't know what anyone can do, really. I am convinced there is a problem in the brain but I can't get any information. I can't get to the bottom of why they asked "Didn't you know he had covid?" when they said they had discovered it incidentally. He didn't have symptoms, so how would anyone know? No-one from the hospital has spoken to me since. Apparently we are supposed to have a District Nurse; we have a carer who comes and asks him how he is and helps him bathe but usually he won't have a bath or a shower. (They will also do washing up or prepare a simple meal if asked) I expect he will go to Blind Vets choir on Thursday, now that he has his denture back, so perhaps Wednesday??? He says his denture and three natural teeth became broken when he had a fall, but how could he have had a fall in ICU? And no bruises. I am on to it with PALS. He had an assessment to make sure he could climb stairs but was prevented from leaving the hospital for at least a week while the care plan was put in place, so he became a rather vocal bed-blocker. How hard can providing one carer a day be? He takes his own medicines - no problem there. Nothing was put in place for the support he was getting in hospital being provided for when he came home. I have had to buy a urinal and have asked for incontinence pads for the bed but nothing is forthcoming. It's as if once discharged they have no further problems at all! I have one waterproof mattress cover but once that is off the bed, there is little protection. A young man came to see us last week who was above the carers (manager), with a psychological background, and I said this to him. These are all very young men, who can't even open a packet of tea bags. They can lift coal into the house, but I doubt they have any understanding of the problems incontinence causes. Thanks for your support. He tried to throw me out but I will continue to be here and do what I can.
Diabetics can feel the cold. My dad was a type 1 diabetic for many years (and a grumpy sod!).Can you get private tests arranged if the GP won't agree to them?
Thanks, klr31, yes, I suppose if the doc won't agree, I could, but the hardest thing is to persuade the diabetic that he should do it. He likes to blame me for the house being "freezing". It's so cold now that he has lit the wood burner and it's really cosy, so he's happy, or would be if his blood sugar was higher. You can't win.
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