My brother is married, 47 & has two sons, 16 & 14. He fell down 4 stairs in 2007, broke his neck & after 3 operations is now paralysed from the neck down.
Tomorrow his wife will take the remainder of her stuff needed & is leaving him taking both boys & dog with her.
My brother is helpless & can do nothing for himself. He has carers who come in 4 times a day, they get him up, washed & dressed in the mornings, call through the day to emty his bag etc & generally just check on how he is. They come back @ 7.45pm to get him undressed & into bed.
Him & I are the only 2 kids my Mum & Dad had, I am comming 50. My Mum has been going down every weekday morning to look after him, gettin his breakfast, giving him his medication & cleaning up.
He did'nt think anything was wrong until 2 weeks ago when his wife dropped the bombshell that she had got a new house & was leaving him because she does'nt like his attitude. Tomorrow they will all be gone & he is left on his own!
My Mum & I have promised him we will look after him. He is devestated but not surprised. She has been living the life of a single woman this past 3 years by going out every wknd & not comming home until 5 in the morning etc. Going on holidays with her friends without her children & my Mum (a pensioner) has to leave her home & my Dad to sray & look after them without even being asked. His wife stopped speaking to my Mum a year after the accident because she did'nt like her cleaning up. My Mum stopped it & only cleans the extention which my brother has had to have built on for his needs. Mum has it spotless but his wife keeps saying "There is more to life than cleaning & I dont clean" so you can imagine whats left for us to clean after she's gone tomorrow.
So now its left for Mum & I to look after him & stay with him at nights. Mum is not getting any younger but says while she has breath in her body she will look after him. Both my Brother & I have talked & agree that Mum cant do it 24/7. Yesterday he told me I am going to have to do more than we thought. A social worker has been out with him to see where things need to change due to his changes. Due to Government cut backs he cannot get care for 24 hrs just the care he is getting. It means I am goin to have to leave my home & stay over night, we could'nt leave him on his own. I wont give my home up as my son still lives here & I am divorced. I like my own bed & at times I need my alone & my own space times. Apart from the hard work we have ahead of us & new daily tasks I wonder how I am going to hold up with my fibro as I sometimes have days I cant get out of bed. I am getting myself into such an emotional tiz cos I dont k ow how I'm gonna manage in trying to put on a brave face for all concerned. My Mum cant abandon my Dad either.
What a bloody mess & state of affairs this is. All I can say is I hope she will discover the grass is not always greener on the other side. She has become a heavy drinker & I can see her possibly becoming alcohol dependant.
Sorry for such a long rant but I feel I am breaking up inside.
Hope you are all feeling not too bad yourselves & are taking things as easy as you can.
Gentle hugs, Jac! This is a horrible situation to find yourself in, and I don't envy you or your Mum. I wonder if it might be worthwhile discussing with your brother care in a more residential setting. I know it's a thoroughly unpleasant thought, and it's probably too early in the proceedings to consider it, but if you and your Mum struggle, it may be one of the only options remaining. Or what about a paid carer - is your brother getting all of the appropriate benefits?
I'm sorry to give the nasty options, and I'm sure you won't be happy to think of them, but I'm a healthcare professional by trade, and I'm afraid these are the things that we're trained to tell people to consider if their own health is at risk from caring for a relative.
I really hope that you and your Mum find a workable solution very soon, and that it doesn't impact on your health too badly.
Hi Jac, if you look online there will be carer support that you can contact, it sounds like your going to need it. also look at what voluntary services can offer you, such as sitting service so you get a break also look at geting an adivercate (spelt wrong sorry) who can help you go through all this.
Also have you talked to your newphew about them getting involved and supporting there dad? Just because there moving out doesn't mean they cannot support, and does your brother have any neighbours who can offer some support such as poping to the shop, cuting grass etc. What is it about nights that worries you and the family?
Sorry for woffling as with Sara,I am a MH nurse so become practitcal but i send big hugs and smiles and were all hear with lissening ears at anytime, use us for the support and hopefully things will settle down soon Ingrid xx
Hi Jac I know how you must be feeling, I had the same sort of situation caring wise that is...and sadly I had to think of a care home.....however if you have the room it would be a really good thing to try to get a live in carer. or two to look after your brother with you and your Mum ,and not put all the pressure on you two.
I dont know your situation but as we had a house and annex and mum had had her own flat we have to pay all the nursing fees with no help . But we get PC and AA but I am sure if we had had the room it would have been better at home with carers. I dont know how much help you get here but in Scotland they help you to care at home,My freind had two carers living in and her husband as backup.
your brother is entitled to many things including attendance allowance. he needs a welfare rights advisor to visit, plus a full reassessment with his OT, social worker, carers and you and Mum. as Tess says an Advocate will work for him and liaise with the different agencies involved. Your parents can also get advice from age uk on his behalf as carers.Please keep in touch.
your brother is entitled to many things including attendance allowance. he needs a welfare rights advisor to visit, plus a full reassessment with his OT, social worker, carers and you and Mum. as Tess says an Advocate will work for him and liaise with the different agencies involved. Your parents can also get advice from age uk on his behalf as carers.Please keep in touch.
regards, sandra.
just googled "vunerable adult advocate" and it brings up many replies if you add your area it will find your nearest free service.- this is how mine was found.
Thank you all for your supportive replies, they help a lot. There is no way we could or he would go into a residential home. He was told by someone who came out to see hime they are stopping 24 hr carers in April 2013. I must look into it.
Someone asked what I was affraid of at night. I am affraid of him being left alone in a house & if he takes sick or something. I could'nt sleep at the thought of him alone & helpless.
I will take onboard all your advice & gently break him in with it. He is very uptight & anxious so we are having to pussyfoot round him. His mind is all over the place & is tired of people telling him what to do. Its a delicate situation with him as he also has panic attacks & its is very hard to watch him when he takes one. Also when he is really stresses to the max he can take like a fit & has a tablet to put under his tongue when this happens. It would be terrible if he took one when he was left alone.
I think your post has made it pretty clear that you and your Mum are just not going to be able to cope with your brother, his physical needs and his mental demons - for all that you feel very negatively about your sister-in-law she must have been devoting a lot of time and effort to your brother. It sounds like she reached the end of her tether with it all.
I think personally that a residential home is the only way to go - I'm sure your brother won't like it, but unless he can come up with a workable alternative then he is just going to have to learn to accept it.
Sorry to sound harsh but if you are going to start giving the level of care your brother requires of you then you'll be the one going into residential care trying to do it whilst suffering from Fibro is just impossible. I know I must sound a real uncaring creature - but I think your brother is being very selfish demanding all this of you and your Mum when the answer is staring him in the face!
Put yourself first in this Jac, you are not well either.
So sorry Julie, I have just noticed this post. Please dont feel bad, I was feeling a bit emotional & I really dont think I explained the whole position properly.
I do know that you had our best intrests at heart & I have explained I hope better to you.
Dont worry I am not upset now. I feel a lot better in my head myself & things are not going to be as hard as I thought. I do know if my brother see's any of us struggle he will say.
Its not a hard job. We are all lucky we live in the same area. He can go uo to Mums easily in his wheelchair, its electronic & Mum got ramps at both her doors so that he can easily get in. I also live in an aoartment with a lift to my place, everything is on the one level so he can also come to me if he wants. On the days he does'nt feel up to it or is bed bound if he is sick or gets sn infection which he is prone too he cn have bed rest & either Mum or I can stay at his place during the day. Hopefulky the eldezt nephew will carry on staying with him at night. He has said he does'nt like the house & I have only just discovered how much he dislikes his Mums drinking & socualising habits. I dont think she can see she is pushing him away. Things are coming to light now for us as we were pushed away & did'nt know what was realky haplening.
I am not saying its all her fault or my brothers. Therd are three sides to everyines story, his, hers & the truth & to be honest I now feel I dont care ir want to know. Its stressful enough without getting all stressed & angry. I feel let go of it & move on. Life is now a new chapter.
Sorry that I made you feel annoyed that you uoset me & sorry for not explaing properly. You where trying to help & I do appriate it now that I have. calmed down & things are not going to be as bad as we thought.
Lots of Luv & Hugs winging their way to you.
Jac
in reply to
Please excuse the typing errors. Its because I'm using my phone & cant see the screen when typing in a lot.
xx
Hi I hear what you are saying & maybe I have'nt made myself clear or told it like is really is. My brother has'nt made any demands on us. We feel he is our bloody, an important family member. Before his accident he had Anglo Spondylitis Arthritis diagnosed at 17, he was determined it would not beat him. He worked hard & often long shifts through his pain. I myself admire him for it , he never complained. Just like now & how he is he does'nt comain. He is the one who is insisting that he will be ok staying on his own at night. Its me who is worrying about him being on his own.
Regards my sister in law she was not driven to the end of her tether. My brother made no deands on her. He never complained about her going out, infact he encouraged her as he thought she needed time out & away from the situation. It was her who was pushing us away frim them so we stopped going to visit as often but she did need my Mum to look after my brother in the mornings while she went to work, which by the way was her choice, it was not that she needed too to make ends meet. She put in place rules which Mum had to abide by like not washing dishes & generally tidying up as she thought she was helping.
I believe its because of the freedom & new lifestyle that my brother gave her has been too much & as I said she went out at wknds sometimes forgetting to come home, not even so much to her husband but more importantly her children. I heard today that she has forgotten to buy the 14 year old a new school uniform for him starting back on Monday & thats to me because she is so busy thinking about herself the important things dont matter to her. I can also add that there has never been any help offered by her family. To me by moving to a new house with both boys who are not disciplined for their wrong doungs etc is making her own life harder. At least when she went out forgetting to come home that the boys had their Dad in the house with them & my Mum to sort them out with breakfast & dinner many times. She wont have that line of care anymore.
I could not for one moment think of him going into residential care. He has come to terms very well with his disability & never complains about sitting in his wheelchair seeing 3 walls & a tv for entertainment.
I'm just getting myself worked up. Once we get it cleaned & into a routine it will all sort itself out & if I need a rest I will be able to do it once he gets new bedroom furniture in as she has taken the furniture she needs.
Hi Jac, please don't think that you shouldn't have posted - we all have our problems and yours are pretty severe, by anyone's standards. I hope you are feeling more settled in yourself soon and I send all my good wishes to you and your family
We are just taking things slowly at the moment. One day at a time.
My shift is not starting until next Thurs, Fri, Sat & Sunday in the mornings. I will be there & get ready for carers comming. I like to get things set up for them. Once they have him up washed/showered & dressed I wil shave him, get him breakfast & his morning meds. Then I'll just get his bag ready & he's gonna go up to Mums for the day times & come home in time for Carers to get him into bed. His eldest son has been sleepin in the house & then goes round to his Mums.
For now we are just doing as my brother wishes, he does'nt want to start thjnking about clearing out yet until he gets his head together. God luv him he has a lot to think about re his finances etc. My Mum just wants to charge in & get a skip to clear out all rubbish, his wife is a hoarder & she has'nt taken the rubbish with her. I've had to tell Mum to calm down, its not her house & we need to let him make the decisions at his own pace. He has a lot going through his mind & we should not rush & push him. The split up was a shock to him & not what he wanted. I've been through that & know how it feels, I was able bodied & at the time I dont think I wanted to immediately start making changes & havin my family coming in & making chanes to suit them. I have explained all this to Mum & although she means well she is listening & gonna go by his wishes. Thank god. Thats one hurdle crossed.
Thank you for your reply
Luv & Hugs
Jac
Hi Soma thank you for your kind words. They help me feel better. As the saying goes it may take a while but we will get there.
Of course you should have posted the blog! It sometimes helps just writing things down, but you have been given some good advice on here that hopefully helps.
I understand you want to help your brother, just don't do to much at your own health's expense!
What about getting cleaners in? Either to do a one off spring clean or on a regular basis? That will take a load off. Shopping could be done on line and delivered direct to your brothers. You only need to put it away. Make sure the bed you sleep in at your brothers is comy for you too. I know how swamped you must be feeling, and sometimes it's hard to see a way through, so focus on sorting out what is in your control and instead of working at your brothers look on it as spending some quality time with him. Good luck. Also share breakfasts at your brothers with your son and your mum and dad. Only one lot to prepare that way. Make your brothers place the hub.
Thank you the Shadow & Cat
I have been thinking through the night when I cant sleep & have thought about getting cleaners in to do a one of clean. I will just have to try gettin Mum round to my way of thinking.
The shopping wont be a problem as he already has a DLA Car which is specially adapted for him & his wheelchair. He has to stay in the wheelchair in the car. He has mentioned about putting me on the insurance & taking his wifes name of. She did'nt like driving the duabled car as it does'nt suit her new image & had to get herself a sport new car which my brother has told her he will no longer be paying for. Hopefully this way I will be. able to get him out & about on some days. He is reluctant to go out because he thinks everyone is looking at him. It will do us both good on that front as I can be a bit of a recluse myself sometimes.
Thanjs for the support guys. I will keep everyone up to date with what is happening.
hi jac, changing drivers on the car is easy and you can do it on the phone, you'll need your driving licence number.
regards, sandra.
Hi Julieevh
Upon reading your reply during the night whilst I think you thought you were helping. It did upset me & thought you where a bit harsh. He does not deserve to be placed in a residential home because I have no faith in these places. I have seen & heard too many bad stories & I think it would destroy him mentally. His brain is fully functional. He eats like a bird & once we get into a routine everything will be fine. I know if he see's me struggle he will tell me to take a break. He is in bed at around 8pm at night & has all his needs in his bedroom. He will be buying new bedroom furniture once the bedrooms have been cleaned out & decorated.
I know you thought what youbwhere saying was for the best but we could'nt do that to him. I have been through an unwanted separation/divorce & lost my home too boot & it was a far from easy time for me mentally &:I think it will be for him. At least he worked hard &'was always sensible with his money & luckily he is fine on that point. Money us not a problem for him.
I would strongly suggest that you and your Mum both contact the Carers Trust asap to see how they might be able to help you, either with signposting to services and contacts near your brother or with support for you in your local area.
julie, can I just say I respect you for doing that. It's such a old,hard medium email as it doesn't reflect the care behind the words and misunderstandings happen. I was in the process of writing to justjac to say that you wrote trying to help not hurt when your new letter appeared. I also respect justjac for taking the time to explain how she felt and how her brothre is. These days, some people have not got the consideration you two have shown and I applaud you both, you restore my faith in human nature.
You needed to sound off and you did. I must admit I had similar thoughts as Julie from your first post but now you have explained more your brother sounds lovely while your sister-in-law sounds a right cow. I do wonder what the boys think and If they were given any choice in the matter. My own marriage broke down a few years ago and we divorced after 24 years of marriage. Whilst he would deny it I am sure my deteriating health had a lot to do with his decision although I was not diagnosed with fibro until it was too late and an old girlfriend had got her claws into him. Your brother will still be in shock at the moment and whilst you have some good advice from the others for the present I am sure if you or your Mums health start to suffer your Brother will have a rethink about his situation. Just an afterthought If money is not too much of a problem perhaps he could pay privately for a night carer to take some of the stress of of you. Good luck with finding a solutions that keeps everybody well and best wishes to you Brother too. xx
Yes I think he would but for now his eldest son is now wanting to stay at nights. He does'nt like the new house. He knows & see's what his mum is doing. He does'nt like how much she drinks & the way she behaves. With it her not coming home or coming home late. Things are looking brighter.
I would prefer my Brother gets his finances sorted & a will made up if the worst was to happen & she would get everything. When the accident happened & after spending a year in hospital before being able enough to get home he made her power of attorney of everything.
I agree, he needs to take the power of attorney off her immediately.
I think you are doing a great job in difficult circumstances. Asking your Mum to let your brother stay in charge of things - inc the clutter! must have been hard, but fair play to her for respecting that, its hard when every instinct is to rush in and rescue.
Do you have dial-a-ride services? these are wheelchair adapted minibuses that, for a small charge, [similar to the local bus] can be booked in advance to take you and your brother (or another] out locally maybe to the park, shops, place of interest, without worrying about driving. if your parents are over 60 they can use them too anytime [book in advance].
there is also nhs patient ambulance transport for him and 1 other to get to app'ts at the hospital [again book in advance].
hugs to all,
respect, sandra.
Hi Sandra, yes he has a taxi service num which suits his wheelchair. He also ha an adapted DLA car which I am being put on as main driver. Its not a flash car by no means, it does'nt bother me at all. It did his Mrs, she had to get a new sporty car aswell for her image. He has told her he is no longer paying for it. He's hoping to get finances sorted this week. He may be in for a shock the way she's been spending.
Thanks again for your reply & information. Much appreciated.
Luv & Hugs
Jac
Hi Jac,
I've just sat here and read all of this thread (quite a feat for my attention levels and the things I was hit by the most were your unending compassion, mental and emotional effort spent in such a selfless way and, in the middle of this seemingly mammoth task, you still have the power left to try and work it whilst keeping your brothers sense of control (at a time when that must be a breaker for him) - I mean this: you have a light inside and whatever wind of stress tries to blow it out; let it blow past; just let it go - that way the important things get done... like looking after yourself too
Bless you
Gary
PS Hope I made sense, aunty morphine is a double-edged sword - along with the fog
Thank you Gary
My ex husband & my son are both called Gary lol.
My Brother has been holding up well. I think he has now come to the decision to get stuck kn & get the place cleaned up & decorated as he wants to get new bedroom furniture & TVs for the boys if the want to come & stay.
My Mum & a couple if relations have helped out y'day & today. Unfortunately I've been hnble with by lower back, hips & leg pain. I could only do the simplest of things regarding bim. He has been going up to Mums & watching sporting things on TV with my Dad.
I start helping him out from Thurs - Sunday. I am kind of glad as I feel it will be like a bonding session, getting to know each other again, as over the years, I felt pushed away from him as did my parents.
Things will be ok. He is smart & has a good head on him & it would be unfair to let him break it mentally.
Thank you so much for your lovely words & thoughts.
I've been a bit spaced out today with the old brain fog myself.
Hope gou start to feel better.
Keep in touch.
Luv & Hugs
.Jac xx
Just jac, sending you love and gentle hugs, thinking of you, hope all is a bit better, xxxxxxx
Aww thank you Claire
Its working out well with the emptyin of her rubbish & getting the place all cleaned prperly as my cousin & Aunt are helping & I dont have to do any of the hard work.
I have'nt been feeling great myself the past couple of days & would'nt have been up to it.
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and the things I was hit by the most were your unending compassion, mental and emotional effort spent in such a selfless way and, in the middle of this seemingly mammoth task, you still have the power left to try and work it whilst keeping your brothers sense of control (at a time when that must be a breaker for him) - I mean this: you have a light inside and whatever wind of stress tries to blow it out; let it blow past; just let it go - that way the important things get done... like looking after yourself too 
feel so useless
Feel betrayed by my family
Lost My Appeal at Tribunal and feel so low
