Newbie feeling lonely and abandoned at xmas

[minimouse]

Hi everyone. sorry I'm a newbie so if I'm posting on the wrong page please direct me. My beloved husband was left with an hypoxic brain injury post cardiac arrest 18 months ago. I have fought hard to bring him home after he did not respond to rehabilitation. He's now home and we have 2/1 care me being his main carer. I love having him home and already after only 4 months myself and our wonderful carers can see some improvement. So I know I've done the right thing by bringing him home. What I cannot get my head around is the lack of support from my husbands family. They say he is so precious to them as he is to me....but refuse to help. Stating their support is to help me. Yet I spent xmas eve and xmas day looking after him so no time to cook an xmas lunch. I've not had one of them ask if I need any help and I'm always criticised for anything myself or the carers do to help my husband. They clearly have no idea now hard and tiring it is looking after someone. I love my husband very much and would never ever give up on him. but I'm tired and just wish at least one of them would help me even if it's just to say do you need something to eat or I'll sit with him for 5 mins whilst you go and have a cuppa. My husband is in a minimal conscious state so is not able to do anything for himself or even tell me if there is anything wrong. I have to work this out for myself by his vocal sounds and signs of distress. Sorry if I'm rambling on....just need someone to help.

[cat3]

Hello minimouse and welcome. I'm so sorry you are feeling so overwhelmed by your situation and let-down by relatives. It must be so hard without emotional and practical support...........I gather the carers are attending to your husband's physical & medical needs only. And Christmas really emphasises the isolation if you're tied to the home: you can't turn on the tv without being bombarded with images of happy families and very normal lifestyles.

Have you told your relatives how tired you are and how you need their help ? Yes, they should BE there automatically without being asked but could it be a matter of their believing that you have everything under control...........not wanting to interfere etc ? Personally, I think you should ask, straight out, for some help and if it isn't forthcoming I would not welcome them at my home.

I do think it's appalling that they're not on the doorstep with sleeves rolled up...........or bringing a ready-cooked meal occasionally, but people never fail to surprise me.

You might try talking to one of Headway's professionals for further advice and/or counselling...........they've helped many people who haven't known where to turn.

The helpline no. is 0808 800 2244.................It's free, there's nothing to lose & they're very approachable.

There isn't much we on this forum can do in practical terms but there will always be someone here, ready to listen and try to offer advice and empathy.

Come back soon minniemouse. Best wishes Cat x

[Hidden]

Hi there

It's difficult to advise, but you are definitely not alone in what you are experiencing....

I am truly "amazed" and "gob smacked" by the lack of help and support from family and friends. When I needed help, I/we assumed it would come automatically, it didn't....why????..... We don't know?????

All I can say is when my hubby eventually asked for help it was forth coming, not as we wanted or expected, but it was a start. Rightly or wrongly people automatically assume you are ok, even when your not so Cat is absolutely right....ASK FOR HELP.... and....Speak to Headway.

I wish you all the best and fingers crossed 2014 will see you get all the help you need and deserve

[enableme]

You are most certainly not rambling....

You are in a difficult situation and need some help, there is no doubt it is out there but can be difficult or usually more that it takes time to sort out.

I'm an occupational therapist who works with people who have had head injuries, but I have also spent the past 10 years as main carer for my late husband.

Unless you experience caring for somebody with a disability your/his family will not be able to fully understand how you are/ are not coping.

I wish I had asked for help, but didn't, thought I could cope, since my husband has died I have really understood how much he needed my help and the impact on me. I didn't realise at the time. Doesn't mean that I don't love him any less, just that how tired I was, how it reacted to things and how isolated you can become made more sense.

His family may not be ready to help (we all react in different ways) not because they don't care but because that can't and don't understand. Why not ask them round and start by asking them to care for him while you make the coffee, they are also probably scared (of doing something wrong, upsetting him, upsetting you and becoming upset informs of him and you) none of this changes how you feel, I just hope they will do that, but you do have to ask them for it to happen.

You should be able to request respite care (takes time to organise) and as suggested ask for rehab support from headway and your specialist / GP.

I hope I didn't ramble too much there, but do know you are not alone, and we do understand how hard it is. Also, I found it good to go and have a cry sometimes, when no one was looking, always made me feel better.

Good luck :0)

[TwoCakes]

Hello Minimouse

Welcome to the forum.

My friend had a bike accident and suffered a severe brain injury. She is still in rehab after 18 months. When she was first in hospital there were loads of people visiting to begin with and then, as they realised there was no 'quick fix' and some of B's behaviour was strange and could feel quite frightening the vast majority have disappeared. This, from what I read from others, appears the usual state of affairs. B's Facebook page is full of people sending emotional messages and yet nearly all of them have never visited B following her accident.

However, I will say that once B became more capable of some things one or two did 'come back on board'. I feel this was because B's behaviour, though different was at least more predictable, and also because they could suddenly see a role for themsleves. I agree with other posters that perhaps directly asking for a clear task to be completed by your husband's family may be a good route.

You mention that your husband's family say their job is to support you. Could you say "What I'd find really supportive would be if you sat with him for 30 mins while I relax with a cup of tea / brought over a hot meal / etc"?

Good luck however you decide to tackle it and use the forum. I've found is very helpful.

[Petehat]

if You want someone to talk to Im on Facebook Peter Corfield Langres I am not a doctor I had a massive a vim stroke 1 st June 2010 here in France I was left hemiplaegic My books may help on kindle if you don't have a kindle you can download the software for free the royalties go to Arni Institute go to their website books are called Peter's Stroke Of Luck Part1/2 but please feel free to talk I am not an author or doctor but Dr. Tom Balchin Lingfield is an amazing man who helped me If you can think of anyway to help raise money look at his site or contact me hope the new year is better for you I know what it's like for patients and families If yo email me And you have a landline in England I can ring you for free don't hesitate

Peter

[BaronC]

Hi and welcome,

You are most certainly not rambling. It seems to be quite a common theme (sadly) then when the proverbial hits the spinning thing, that's when friends and family start to show their true colours. All you can do is learn to rely on those people who ARE there for you and I'm sure there are many of them.

And remember, the people on this site are always here for words of advice and general support whenever you need it. Very best wishes to yourself and your husband

Andy

[Danslatete]

Caring for a loved one is a very difficult place to be in. Please invite them( the family) over, maybe all together and ask them what they would be comfortable doing to help.

Could someone come and read to him a while, maybe someone could cook you a meal on a regular basis. Make a list of things you would really love to do If you had the time.

Maybe they don't want to get involved in the difficult stuff, maybe they are just scared as to what is left of th person they once knew. If you had a list they could maybe find something they were comfortable doing and feel positive about it.

When my dad was ill, I just wanted to spend an hour in the bath with a good book! Unfortunately we knew his illness was time limited so although we had an intensive period of stress we knew it would end. I'm not sure how we would have fared if it was for time unknown.

I hope you find some help and also feel supported by people here.

[Hidden]

Hello and welcome!

You are not rambling. Your feelings are real and not uncommon. Sometimes family and friends just don't know what to do. The family may be in denial. Many carers are like swans..... all calm, collected and capable on the surface but underneath paddling like fury. Sometimes we can be our own worst enemy by being too independent; giving the impression that we are coping and have everything under control. So often, the emphasis is on the person with the medical needs and the carer; trying to hold it all together understandably gets overlooked. Caring is a tough role. They get tired and overwhelmed at times, but folk just don't seem to be able to see it! I know how difficult it can be to ask for help. It is not a sign of weakness. If friends and family lack intuition or are not forthcoming it may be because they don't know what is needed, or may not want to intrude, for fear that it will be perceived as interfering and/or criticising. You need to be specific and give them instructions. The genuine friends and family will then rally around. Take care. x

[Stardrop]

Hi,

A lot of people are frightened to offer help in case you ask them to do something they don't think they can cope with. I knew a lady who had triplets when her toddler was 18 months and learnt a few lessons from her. When someone said 'if there's anything I could do...' She would whip out a notebook, and ask what days they had off work, their phone number, experience and would they like to bring a friend when they came to help as lots of people 'buddied' when they came to help.

I only had twins and admired her efficient way of mobilising help. I did find that encouraging someone to bring a friend worked, and it meant I could get to my own doctors, dentist and hair dresser appointments. A lot of people actually enjoy helping once they've got over the initial steps. Can you be bold and ask for the help you want? I had a retired neighbour who could come in and do some brain exercises with me. Another person would occasionally pitch up and take me out for a drive for an hour.

[pigletmumma]

First of all, you aren't rambling! You are tired and shattered and need a break, that's all. And as your man's primary carer the secondary carers should take note of the things you need done. You are the Generalissimo, if you like! I doubt they mean harm - but people can be remarkably thick-skinned, and sometimes need a very big prod to get them moving in the right direction. Love to you and hubby and I hope things get better for you soon.

[minimouse]

Thank you everyone for your kind replies and offer of support. I'm afraid I've just resorted to the fact that I'm on my own to deal with this. I've asked over and over for some support. Sister in law has offered but never shows up. Now down to 1 visit a week and then only pops in for 5mins and its only if "the family" think I'm doing something wrong and she has her input, brother in law once a fortnight and step boys come once a month if we're lucky. They have all said, they have their own lives. So that's it me and hubby are on are own.

Thank you for the number Cat3 I will be calling them for some support.

[cat3 in reply to minimouse]

Good for you minimouse & please let us know how you get on. xx

[Ettenna]

Hi, I don't know where in the country you are but have you contacted Brain Injury is BIG? I found that Headway are great but not so much for people who are in a minimally conscious state. It has been acknowledged that BIG fill that gap. My daughter is in a low awareness state and they are a massive help. They have members all over the country so you may find someone close to you or someone in the same position on the forum. braininjurygroup.org.uk

[spartan300]

I was ill all over Christmas and the new year on top of my brain damage and other problems from the vaccination, did I get any help what a laugh more chance getting help from the Fairy's at the bottom of the garden, come to think of it ? or was I dreaming.

[cat3 in reply to spartan300]

You haven't lost your sense of humour John.........I think that's what keeps us going ultimately. Hope you're OK(ish) now. My best wishes, xx

[spartan300 in reply to cat3]

thank you I like a good laugh sometimes gets me in trouble, do I care no, if people cannot see the funny side of life that's their problem, and it is very difficult to offend me, I have lost count now how many people have said you have all ways had brain damage, makes me laugh then I think of all the stupid things that I have done and the stunts I have pulled over the years am smiling now. lots of love john, xxx.

[cat3 in reply to spartan300]

The thought of you smiling makes me smile.........it's infectious isn't it ?

You sound just like the man I used to be married to & who I remained friends with until he had a SAH 6 months after mine. That was 18 months ago & he still doesn't speak or move. But he does respond to others with shakes of the head, winks, enormous smiles and an occasional rude gesture, so his humour is still going strong.

And I too have an occasional giggle to myself when I recall some of the crazy stunts he pulled. Of course it's tinged with sadness now but, d'you know what John, we still keep the humour going (son, daughter & I) .......it's what's kept us sane through some rough times.

Hope you still have some laughs in your life........ & give that grandson of yours a big hug from me. xxx

[spartan300]

just one more thought , I think I will be changing my will so that the ones that have been truly loyal to me and loyalty is one thing I truly admire, my grandson is the first one that comes to mind.