Not sure who to reach out to

New to Carers Connect
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First, I’m new here.
2nd, I’m not sure anyone will be interested because I think most carers go through what I am.
3rd, I feel like I should be able to cope easily and yet, I am struggling. I think I’m burning out a bit.

My husband is 10 years older than I am. He has T2D and had his right leg amputted above the knee in Jan 2023. He was in and out of hospital and suffered a lot of trauma over the course of 8-9 months. He contracted Covid in one hospital before being moved to another for rehab but because he had Covid and a G3 bedsore, they couldn’t rehab him. Then they dropped him from a hoist into a commode on his amputated leg. Once they got him back and settled they sent him to a nursing home (for people with dementia) so they could heal the bedsore. They failed to do that but dropped him twice from a hoist during transfer to an ambulance because he had a UTI they couldn’t treat. He went back to the acute care hospital and once they treated the UTI (which was resistant), they were going to send him back to the nursing home with the bedsore still not healed. He refused, I refused and they sent him home once I got the hospital bed in place and had what was necessary to receive him. He was, as you can imagine, not himself. I was given the task of healing the G3 bedsore (which I did with the assistance of District Nurses). Then he started having seizures so he had to go back into hospital where they put him on seizure medication without actually checking first to see if it was epilepsy or not. It wasn’t. It took me 3 months to get him off a medication that they started in less than 48 hours. He was having PNES (psychogenic nonepileptic seizures).

Now, I’m dealing with bowel issues which are not cancer (we checked). I suspect they are a result of trauma being processed through his body.

Anyway, it’s been quite some time since I started caring for him. Yes, we had carers coming up to 4 times a day at one point but the stress and disruption was just too much (the care company was not helpful). Now, we are down to one carer one time a day and it has alleviated a lot of the stress and disruption. However, it is exhausting dealing with everything 24/7.

He has, on now 4 occasions, threatened to hurt me… physically. He will act as if he is going to hit me, head butt me, or strike me with his elbow. I know he feels frustrated and trapped. I do, too.

I am irritable and snappy on most occasions because it feels as if he just wants me to do everything from all that I have to do to telling him what he needs to do next. We’ve been going through the routine of care for nearly two years now and it seems like he has no idea what the routine is.

We have an overhead hoist and try to get him in his wheelchair at least 3 times a week. Unfortunately, with his bowels being problematic, it isn’t always possible. It seems like things improve and when I think all is well, we have bowel issues once more. It’s seems like one step forward and six steps back.

I know it might seem like I’m moaning and complaining. I feel invisible, unseen, uncared for, and frankly, fed up. I know a lot of you do, too.

I keep telling myself that this is temporary and things will improve. I’m just not sure I believe it right now.

Thanks for reading (if you got this far). Thanks for letting me release this. All my best!

PS. It would seem I’ve told you nothing about me. I’m 63 and disabled. I have a rare degenerative genetic disease that is slowly taking away the use of my hands and feet (Charcot Marie Tooth disease type 1a). I am still walking (though they don’t know how). I can type but not for long. I find writing with a pen difficult. I lost two of my sisters in less than a year recently (I am the youngest of five–now three). My children (grown) and grandchildren are in the USA… I am an American/British person. I am trying to support myself as it would appear that pensioners and disabled people are going to beblasted by this government in the future. To that end, I have a TV show premiering on 16 Jan and am doing more things online. I left the NHS as a senior manager over 10 years ago due to my disability. I hope that helps you get a clearer picture of who I am and what I’m doing.

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Hi @tootsie, sorry to hear that you are having trouble with hubby. I would suggest that you contact the carers helpline for further information and advice but speak to you GP as perhaps hubby needs some respite from you and you needs some break from him. I don’t know if any of union you were with whilst in work could help you? Some of them know other adveunes for help. I would suggest also speak to social services if he start to get to much out of hand for help. All the best

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Hi Michael.

Thanks for your well-meaning response. I appreciate it.

Respite care isn’t an option. We won’t put him back in a nursing home and having people come here to look after him isn’t possible. He still exhibits PNES when it suits him, he cannot tolerate certain foods (it’s a long list), and his meds can be problematic. Not only that, we are not trusting of strangers in our house when they will be here for only a short time.

Our GP is useless. He hasn’t been to see us since my husband came home from hospital. I’ve had to fight the GP and sometimes, hospital staff, to get them to understand that they need to speak with me regarding his care. My husband doesn’t retain what he is told and to get it from him secondhand is ill-advised.Besides that, I have followed him and his progress from pretty much day 1. I am a goldmine of historical information about him.

The NHS unions don’t really care about their members (I know, I was a member when I was working). They certainly aren’t interested once you retire.

If he actually ever physically hurts me (right now it’s just psychological and emotional games), I will be in touch with social services. I’ve told him if he gets combative that I won’t be able to care for him. He seems to think that the games he is playing aren’t valid because he hasn’t physically hurt me and it’s my word against his.

Anyway… life goes on. It will give me plenty of opportunity to reframe, reflect, and redirect how I choose to go forward, I’m sure.

Thanks for being there, Michael.
All my best!

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@tootsie….Hi, welcome to the forum. I think that just by you being on this website it will help you a lot. You’re dealing with an awful lot on your own and if you’re unable to have respite or carers to help at least you can chat on here about how you feel and how things are without coping completely on your own. I’ve found this website a life saver. I’m 55 and my husband is 59. He’s been disabled for many years but over the last 2 years his health deteriorated drastically. He spent 7 months in hospital and rehab last year into early this year. He nearly died twice, once from a hernia causing a twisted bowel where they had to operate and then from sepsis. He’s had liver failure, a stroke and severe mobility problems. He came home last March and we had carers in 4 times a day doubled up. He couldn’t/wouldn’t work with the physio team and ended up in a care home where he still is now. He no longer talks to me and blames me for where/how he is because
I could no longer cope with him at home. I work full time and my 85 year old parents live with me as well.
Always here if you need to chat at any time.

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Awww… Sue. Thank you for your reply. I appreciate it.

You touched my heart and brought tears to my eyes. It’s heartbreaking when we lose the people we love before they are gone.

You are right. Just being here will help. Big hugs to you. I know you’re dealing with a lot, too.

All my best!

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@tootsie….it is so hard to watch someone change before our eyes and for them to not try to help themselves where they can. Thanks for the hugs, sending one back to you too.

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Hi @tootsie and welcome to the Forum. You are quite wrong about people not being interested. I am sure you will find out that we do care, because so many of us can empathise with your situation even if we aren’t in exactly the same.

One of the great things about the Forum is that you can sound off without fear of anyone judging you. We each have our own problems and we find ways to deal with them - sometimes with help from friends on here. Take it from one who knows, everyone on here needs help and support from time to time, even though we don’t always realise it. That support is freely given.

I know two people with CMT - one was a patient when we had our clinic and I know how he struggled to deal with the issues regarding his hands and feet, but we found ways round it as we knew him well. He told me once that some people judged him because he couldn’t always pick up change or an appointment card from a desk and I found that particularly hurtful on his behalf. I am fortunate as my parents taught me not to judge people with physical differences from a very early age.

I had to smile when I read about doctors and other medics having to be educated to tell you things and to use your encyclopaedic knowledge of his medical history as I’ve had the same issues. Our GP is amazing and very supportive, but until la hospital medic gets to know us I have to keep butting in and pointing out that since G’s stroke his short term memory is shot and I explain that we debrief on the way home and then again once home and settled so it starts to stick. During his recent hospital stay he was delirious for over a week and still has no memory of that time. Doctors told him things which he cannot recall and I have had to chose to fill in gaps. One sat there while I recounted the last three years medical history without any notes and then said “Wow! I am glad you are here - I had no idea of any of that”. I told him that was why I had shown Ward staff the LPA and asked repeatedly to be the one who was given important information as he would not remember it… Cue the slight reddening of doctor’s face. It’s infuriating isn’t it? Who knows a patient best - usually their spouse!

To deal with your own problems as well as your husband’s must be extremely difficult and if he makes to threaten you I can understand how scary and upsetting that can be too. I think @Michael_1910123 's suggestion of contacting the CarersUK helpline could be a good move for you. They are experienced in guiding and can refer you to the right place to get more help.

Do keep posting and chatting on here as it can be a great source of comfort to share. The “Roll Call” thread is a good welcoming, safe, place as well - many of us chat on there regularly and share how our day is going - as well as having a moan about things.

:people_hugging:

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Thank you, Chris.

I appreciate your response. I’m glad to know that you have known others with CMT. It isn’t easy to find people who do.

CMT has made me extraordinarly creatively resourceful, as you might imagine.

I may contact the helpline. I don’t know yet. I’m thinking about it. Do you know if it’s confidential? I’ll have a look.

I’ll look for the Roll call thread, too. I haven’t seen it yet and I’m relatively new so it might take me a bit of time to acclimate.

Thanks again, Chris.
All my best!

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Just a quick welcome for now. My brain damaged son has just gone back to his flat. I’m sat in my recliner in front of the wood burner. Jobs all around me but my get up and go has got up and gone! A feeling you will know, I’m sure.

It’s really important to introduce a third person to your house so that in the event of you suddenly being unable to care, who would/could help? Starting with someone to help you with domestic stuff, to reduce your overall workload, but from a care agency.
Have you investigated the possibility of NHS Continuing Healthcare?

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Thank you, @bowlingbun. The quick welcome is lovely.

No, I haven’t investigated the possibility of NHS Continuing Healthcare. I will look into that, too.

The conversation I had with Integrated Social Care who wanted to do a Carer’s Assessment was that if anything happened to me, I knew they would put him in a home where he would die. We have no family here (he is British BTW) and no one nearby to help.

I don’t know if you’ve used a care agency but the care agency they put me with here is problematic at best. I don’t have the time and energy to vet or train anyone (which is what I had to do with the carers that came).

Social Care take as much as they can from us to mitigate costs. And they do it with GLEE! I called once to ask about the financial side of things and they said because the govt had put up our benefits, they wanted their share. I was gobsmacked! It was an unnecessary and uncalled for comment.

You’re right. I put my feet up at every opportunity. There are some things that can just wait… if necessary, for years.

Thanks so much for replying, @bowlingbun. Big hugs your way and may you find the opportunity to rest and recharge.

All my best!

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Hi - Here’s a link to the Roll Call for December. As it gets quite long the oh-so-lovely @susieq (who is one of the Moderators on here) starts a new one on 1st of each month, but there’s always a link to the next month when she does that.

https://forum.carersuk.org/t/roll-call-december-2024/126141/811

Have a mooch around and you’ll see we have a laugh, joke and tease as well as being serious. It all helps to relieve some of the feelings of being ‘alone’ in our role.

More later - got to tidy the kitchen…if you saw it you’d know why!

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Thanks, Chris! You’re a STAR! :star::star::star:

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:innocent: Twinkle… twinkle…!!

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@tootsie
Welcome to the forum. As others have said it’s a friendly non judgemental forum.
My circumstances are different to yours.
Now an ex carer as my lovely husband passed away after suffering strokes vascular dementia and other health issues. Was a very sad long goodbye. Unfortunately I had no choice about him going into a nursing home. His consultant wouldn’t allow him to be home with me for his safeguarding and mine.
I do hope you will stay on the forum. It’s been a lifesaver for me. Joined at my lowest ebb

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@tootsie welcome, never feel that people here aren’t interested because we are all part of the same club (you know, the one that no one would choose to be a member of!) and we get it in ways that people who aren’t carers can’t possibly understand. Try if you can, to shed the guilt and self-blame for ‘not being able to cope easily’, we all have days (sometimes weeks!) like that and there is no shame in admitting that you are struggling.

Sometimes it does feel easier to just get on and do everything yourself rather than taking the time to train paid carers, but you need to have a contingency plan for if you were unable to care for any reason, especially if you don’t have family available to help.

Please do contact the helpline: 0808 8087777 they are open 9am-6pm Mon-Fri - it is confidential unless they think there is a serious risk of harm to the caller or someone they care for.

Alternatively Samaritans can be contacted 24/7 in complete confidence on 116123

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So sorry about your husband, @Pet66. Thank you for your reply.

I’ll be here and checking in when I can. Big hugs!

All my best!

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I wasn’t actually suggesting that you had someone initially to do anything for your husband, more someone to reduce your workload as “ housekeeper”. To vacuum up, do the laundry, clean the bathroom, and food prep. Initially, maybe just a few hours. This worked well for my disabled mum, after I was badly injured in a car accident. Once mum got used to it, she enjoyed be ing able to ask someone to do jobs, and enjoyed having someone else in the house.
Does your husband have his own income or savings?

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Thank you for responding, @EEG. Guilt and shame are the two traps we all seem to visit on occasion. Thank you for that. :blush:

I appreciate your support. I will reach out if needed. I do understand about a contingency plan. I’m just not sure how to set that up right now.

I’m feeling better. I had a bit of a heart-to-heart hard talk with him and while he understood at the time, we’ll see how much of it sticks.

All my best!

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Thank you for clarifying, @bowlingbun, and the suggestions.

No, he doesn’t have his own income or savings. Benefits only. And he lauds that over me like he’s the only one with anything coming into our account and that it’s his money. Let’s not open that can of worms.

I’m not earning anything yet, either. So the meagre bit I get through benefits is something he calls, ‘paltry.’

Anyway… it’s one day at a time and we are doing it the best we can. It is enough.

All my best!

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It’s definitely confidential :slightly_smiling_face: Details can be found here

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