Feeling like a child

[Africanmonkey]

Folks today I have broken down as the pain is to much for me but I have noticed I seem to be getting more and more like a young boy. I crave comfort and hugs and cuddles like my mum used to give me.

[Blue-52]

ahh, we all have these days, and they are dreadful, sending you lots of positive vibes and healing hugs 🤗🤗🤗🤗

[Africanmonkey in reply to Blue-52]

Thanks 111 has sent an ambulance now so see what they say

[Scooterz in reply to Africanmonkey]

Are you in danger? Do you feel suicidal?

[Africanmonkey in reply to Scooterz]

Yes is the answer, but I am OK thanks 111 has sent an ambulance to make sure. It's funny but yesterday evening the man we care for was sent an ambulance as he was in a state. He was trying to get the Dr to give him the botox injection as he been waiting weeks. He then said he might as well be dead. This morning he has just slept

[Scooterz in reply to Africanmonkey]

Oh that’s so sad

I hope you get the help and support you need.

[Africanmonkey in reply to Scooterz]

It's hard to get the help I need as he doesn't give us time to do anythingThis evening I have been in AE but he has still been phoning us as he wants to get out of bed for his exercise

[Scooterz in reply to Africanmonkey]

You do need to look after yourself and keep yourself safe mate

[MaggieSylvie in reply to Africanmonkey]

OMG - someone else in a similar position to myself, except that my partner, the man I care for is in hospital (He's in hospital most of the time). He has carers 3x daily but somehow I am on my feet cooking, cleaning, caring, etc. all day and then he expects me to get up at 3 am to take him to the toilet, which is a yard away from his bed (in the conservatory). Unfortunately he has been in hospital so long, so used to having someone on hand all day, but they have totally changed our way of life by saying he can't climb the stairs, and that is untrue. So I get where you're coming from.

You need to take the opportunity to rest now that you are in the hospital. They won't let you sleep for long, as they'll probably be taking your blood pressure every few hours. He needs someone to be with him to help him out of bed etc., but clearly it can't be you at the moment. You say "we", so can the other person help him? I think if you have FM and now anaemia, you probably should not be doing that job; you have seen the toll it takes on you.

I hope you feel better soon, and take more care of yourself in the future.

[Africanmonkey in reply to MaggieSylvie]

Thanks for the support, I didn't stay long in hospital they just gave me 2 drips and then out so we my wife and I had to go back to him. This is the problem he only thinks about himself even today I started off OK but by lunch time I was in the same situation again

[MaggieSylvie in reply to Africanmonkey]

Again, similar to me - I was only in the hospital 2 days three weeks ago, with a more or less constant drip. Then they discharged me. Then they discharged my partner (from the same hospital) and then they requested me to go back for an MRI the next day! My partner thinks only about himself, although he will sometimes say he's worrying about me in silly ways that he would never have bothered about before. I've just been told that he may soon be mored to a home and that (and this was a shock) he may need to be there long term. I have been given a leaflet to read and guess it may be permanent. So far, coming home has not worked but they won't take him to the dentist to have a replacement denture, saying he is not fit to be discharged. All of this is a worry. It is all exhausting. Do you and your wife care for this man 24/7? It is a lot when you are not well.

[Africanmonkey in reply to MaggieSylvie]

Hi Maggie, I am at work with him 24/7 but my wife has 2 days off or did do he has now changed the routine to 3 visits a day. So now she only gets 2 mornings off but not paid for the 2 visits she does. This morning he threw a tantrum and told us to go, so we just leave as he does that often when he can't get what he wants. So I get no rest at all and he might call us at night so we have to go

[MaggieSylvie in reply to Africanmonkey]

Oh gosh, I can certainly relate to that. My partner has "boo hoo" tantrums when he can't get his own way immediately or if he perceives what he says has been contradicted. Very difficult to keep a conversation going. I have my own health issues so I can't be available 24 hours a day. They see that I can't and so he is shortly to be discharged to a care home. I am going to look at it this afternoon. It's a bit further away than the last home but I hope it is better able to look after him. At least it's in the town where his friend lives, but his friend seems to be going the same way - not blind but deaf. You can't hold a conversation, just let him talk. I don't know whether the home is to be permanent, and feel very sad about it, but at least I can rest, but I don't know what to do about all his stuff.

[Africanmonkey in reply to MaggieSylvie]

We had sorted out a care home for him to have restbite for 2 weeks but 2 hours before the ambulance came he cancelled it. So we are back to stage one. Now he wants to get rid of the bed he is in its a proper hospital bed so for us it's good but he wants his old one back

[MaggieSylvie in reply to Africanmonkey]

He's enjoying being "king of the castle". It's not right that he should cancel what is effectively your respite.

I don't know what to say about the bed. If it's a hospital bed there must be some connection to the hospital that could help you. Is his old bed somewhere in the house? I think occasionally the word No could be used when dealing with his demands; none of us can have everything we want - without paying for it!

[Africanmonkey in reply to MaggieSylvie]

His reply to No is to call the police

[MaggieSylvie in reply to Africanmonkey]

Call the police for what? They are not going to give him what he wants. As for actually calling the police, I did just that when my partner started to attack me the last time he was at home, and he couldn't believe I was actually doing it. The police came, and there was no usual way of dealing with the situation as we have no support around us. So they said to put a wedge under the bedroom door in case he tried to come in, and not to have any contact with him. So at 3 am, he was calling out and I made no contact, so he went into the kitchen and started smashing all sorts of things. They came back in the morning and swept everything up, so I didn't know exactly what had been smashed until the day went by. They took him back to hospital - where he still is at the moment. In your case, surely, the social services has to be able to help you.

[Africanmonkey in reply to MaggieSylvie]

He dials 999 so they have to come but not quickly now as they know him. But he takes over an hour to tell his story and he even tells them to shut up social services are stuck as he declines most of the help

[MaggieSylvie in reply to Africanmonkey]

He needs a psychiatrist and a firm hand.

[MaggieSylvie in reply to Africanmonkey]

I don't know how you sustain 24/7. Can you sleep on the job? You say the patient has changed the routine so that your wife only gets 2 mornings off - 3 visits, not 2, I guess. They are terribly selfish and ungrateful for the help that they get for nothing. How do we overcome this resentment when we know it is the illness - whatever that is - that is causing the behaviour. It's hard for me because I have no-one to share my feelings with.

[Africanmonkey in reply to MaggieSylvie]

Well we are both in the same situation so if you want to get rid of things just message me I am always around. He is not bothered about us as long as he gets what he wants. Even his social worker can't sort things out as he is always demanding, even his GP calls me now to see what is going on

[MaggieSylvie in reply to Africanmonkey]

I don't feel I have the authority to do that, even if he does trust me to make decisions for him. It's books that he can no longer read (some of which may have value) tool boxes full of tools that he can no longer use, but Blind Veterans provides him with all sorts of things - he has a huge woodworking tool that is not here, but I don't know if he has a dream that he will be able to use these things at some point. A year ago he was able to do anything with help, but being in hospital for so long has made him more blind, weak, and more "demented". An ordinary hospital just can't look after him in the way he needs. His GP never rings me. It's possible she doesn't know he has been in a hospital out of county. For that matter, my GP probably doesn't know that I have as well. I'm still waiting to hear the results of my MRI scan from a week ago. Blind Veterans hasn't been in touch for over a year. Daughters don't want to know anything.

[MaggieSylvie in reply to MaggieSylvie]

Surely your man should be in a care home.

[Africanmonkey in reply to MaggieSylvie]

He still has mental capacity so he is adamant that he is going to die in his house. He has made his will and done everything he needs to do. So it's just a case of making him comfortable in his little room. He has a TV and music and records alot of programs that I have to set up each day. All his food is made into soup except for his pudding and custard. He has lots of chocolate and sweets, but now he takes his medication when he wants to and the amount he wants. He has strong pain killers but doesn't want them

[MaggieSylvie in reply to Africanmonkey]

On the face of it, that sounds really good, but if he still has mental capacity, he should be able to see that his behaviour is not conducive to good relations with those who care for him. I would worry about him taking his meds as and when he wants, though. I suppose you are responsible for liquidising his food into soup - presumably because he cannot chew? My partner has no front teeth but the hospital has refused him access to the dentist, and I have cancelled so many appointments because of it, but now if he is going in to a care home, his dentist is only a stone's thrown away, and when I phoned the admin staff last week, they said he would be able to go. So that's good. He doesn't need pain killers but I do, but they wouldn't help if I was on my feet all day long - something he doesn't understand.

[Africanmonkey in reply to MaggieSylvie]

Just got home again and he was still awkward with us he had to get out of bed for his exercise even though I couldn't lift him up, as he has to sit in his chair right back or he slides out. He now wanted to try a new way as he says he can't hold his legs open.so he had a piece of soft tubing filled with sticks stuck between his thighs but he still gave up and expected me to hold him. I said No and he just starts to get annoyed then his legs started to spasm so he went back to bed

[MaggieSylvie in reply to Africanmonkey]

Oh, so you are live-in carers! It still seems like a lot of work and that you are pushing a boulder up a hill all the time. I think that guy is playing you.

I got a call from the hospital today to say that John is being moved to the care home tomorrow. They rang at 9 am today, which is Sunday. I was awake but resting my back. I've geen deleting emails between my friend and me, and it reads like a diary. It answers a lot of questions about what happened when and documents some of my partner's behaviour. I am often asked how long he has been like this, and so far, I have got back to 2017, so it must be ten years anyway.

It does sound as if your patient can do quite a bit for himself if he got back to bed when his legs spasmed. He probably needs to be congratulated when he does something for himself to encourage him to do more and stop demanding so much from you.

[Africanmonkey in reply to MaggieSylvie]

We are not live in carers but are at the end of the phone all day long. I have been today by myself as Betty is at church. But he still wants the same things and I had to write a letter to the solicitor about his electric bill as he says 40 is to much even though he has used it.

[MaggieSylvie in reply to Africanmonkey]

What's the point in writing to a solicitor, when he has used actually very little electricity? I suppose he's blaming someone else for its usage. And you are at the end of a phone (how far away from him?) ready to go out in all weathers. I don't know where you live, but what if you are snowed in?

[Africanmonkey in reply to MaggieSylvie]

I have a 4x4 car a Freelander so I can get out in all weathers. Yes he says his supplier put it up by 10%in September rather than October. But he is not bothered he says it is wrong so wants them to sort it out. We know he has used it as even the meter readings say so. He is going to owe about £1000 by the time he has finished. So we are going to pay the £40 and tell the solicitor to say it has been cleared by the supplier to stop all this stupidity. We can get it back slowly from him

[MaggieSylvie in reply to Africanmonkey]

I pay mine by direct debit. You should not have to be involved using your own money, especially as you have other expenses getting to him. I do get why you are doing this, though - it could be more trouble demanding that he pay it properly.

[Africanmonkey in reply to MaggieSylvie]

Yes you have the reason correct

[Yassytina FMA UK Volunteer]

Sorry too read this how did you get on ? sending big hugs too you, we all need some comfort for sure and hard when we miss loved ones, someone always here too chat .

[Africanmonkey in reply to Yassytina]

Thanks, I ended up in AE have 2 drips in me. I am also anemic

[Gigiruth in reply to Africanmonkey]

Thank you for letting us know you are in A&E safe and have drips in to help.I hope your health and situation improve.

Look after you.

[Yassytina FMA UK Volunteer in reply to Africanmonkey]

Thankyou for the up date, I hope they get on top the doctors of giving you the right tablets I hope you will start too feel better soon ,take care.

[Gigiruth]

If you need advice on workers rights when you are too ill to work and live in UK talk to Citizens advice or a Trade Union if you have one.I hope you feel better soon

Take care

Gigi.

[SpidermanLuvva]

I feel like this more often than not lately,I've completely regressed in my interests too

[Smilesalot]

Sending hugs 🤗🤗🤗🤗🤗😍 ur way hun ❤

[Ladame]

Sending hugs. This horrible illness makes us very depressed at times and we need hugs to help us cope, yet when we're at our lowest is when it's the hardest to ask for help. I'm so glad you phoned 111 and are receiving care. I wish you peace in your heart and understanding from your employers as well as relief from pain. 🙏

[Africanmonkey in reply to Ladame]

No understanding from the man we care for as all he wants is what he wants nothing else matters.. I have been to him again today and am back now doing just what he wants

[Princess61]

Thinking of you 🤗🤗

[Africanmonkey in reply to Princess61]

Thanks need all the thoughts I can get