I am disabled main carer

I am disabled with osteoarthritis in spine and hips. Also have bronchiectasis. Diabetic. High blood pressure. High cholesterol. Blood clot in my brain. I can suffer with infections. And pain all over my body
I look after my wife who has bio polar disorder. High blood pressure. Diabetic. Sleep apena. Dystonia. Arthritis. Over weight. Learning disability. She won't take advice from professional or me.
All though we met in 1996 I didn't know that she suffered from bio polar but over the years of being abused. Physical. Sexual. Mentally. I have looked after her even after she gave up our first baby without telling me all though unwell at the time but under social services. But I don't blame her for what she done I blame the professionals who was involved at the time.. Since then I have had problems with professionals no matter who they was.
All though my wife says I would like xyz eg in garden but she won't help to make her dream a reality she won't help even with household chores. My wife lacks motavation in some areas but not others she will lay down. Play her pc game for hrs on end. Etc etc
She won't even help with weeds in the garden and yet she wants raised pots for flowers. And veg. She wanted decking some where to feed the birds. She wanted a fish pond etc for wildlife. She won't even help to look after our dog.

How would you encourage someone like my wife?

Thanks

 

I understand you are frustrated with 'professionals', but getting in touch with your councils adult social care department will go a long way to them being able to steer you towards the correct assistance you require. Nothing we could suggest on here would be beneficial to your situation.

 

But your suggestion is a good one.

 

Ah 'm so sorry to read about your situation Gizmo. Like Flounder mentioned, it sounds like she needs social services to step in or similar. Things have changed a lot over the years so things might be different now.

If I were you (just my opinion based on what you have told us), I would focus on what makes YOU happy. If your wife doesnt want to get involved, that is her look out. Look after yourself and do what YOU want. You sound like you've got it pretty tough yourself already. If you make sure you are OK and happy, then you will be better able to cope with your wife's situation. We only live once so make sure your life is a happy one.

Hope that helps, I really feel for you.

 

Many thanks for your reply. I have been involved with asc for a few years and had plenty of complaints against asc and care company's. As I have been trying to get support for 25 years due to mental health. Been to health in mind. Well being. Dr Surgery. Etc at the moment I am under care for the carers as they feel I have ptsd as well as personalty disorder. Reactive depression. But waiting to see what happens.
I thank you for your ideas and help

 

Ah it is so hard getting care - the mental health services in the UK/NHS are wholly inadequate and need better funding etc. I also found out I had PTSD but ended up paying for treatment privately after years trying to get help via the GP.

Please keep your chin up. xx

 

Motivating people who are inwardly fighting a private battle within themselves is so very difficult.

I am in a similar situation with my brother , trying to sort things out for him now in preparation for when Alzheimer's take on an even firmer grip.
He still ,in the eyes of everyone, has mental capacity to make his own decisions....but will he make them???....no!
I know he's fighting for his rapidly decreasing independence and this urge to do things for himself when he decides the time is right is also fuelled by his denial of having the condition. But time is running out and trying to make him understand that soon all decision making will be taken out of his hands, so it would be far better for him plan his future himself...now.

As @Snorky85 said above....all you can do is to look after yourself.....you wouldn't be of much help to her if you didn't . Keeping a watchful eye on thing's allowing her to choose her own pathways in life while you continue to follow yours.
Just ' be there for her' that's all you can do ...for the time being.

Take care @Gizmo .

 

Thank you for your reply and kind thoughts.
I find it extremely hard to support my wife some time and other times I just give up trying.but I feel responsible and worry that she makes the wrong choice in life. for her all though she says I won't get that bad she has ended up in itu through misdiagnosed by NHS unfortunately and I made complaints never got anywhere really.
Due to bio polar. Learning difficulties my wife will do things that she wants to do even towards me.
As we are in the world of covid every one feels the strain of what covid has done. But hopefully vaccine will help if we survive. With people who are mentally ill have learning disabilities find it alot harder to understand. Since May 2020 as a carer and disabled vulnerable person we have had no support all though it was asked for plenty of times. It's hard to understand why no support. I am not even aloud to go to our Dr Surgery if my wife has a appointment not even as a carer.
They won't even give me a appointment only phone calls.
I have written of to our mp as well about issues of refused covid test by 119.
Thanks

 

The health services have in some areas been cut back to the bone and yet when needed in some other areas the spending seems to be there by the bucket loads..What good advice from JWK and good to see lots of kind thoughtful people offering as much as they can. My granddaughter suffers with self harming from time to time and it was only the fact that my daughter was not going to take no for an answer that she managed in the end to get a good support network for her.
Sweetest child, so young yet can be so troubled at times.
Hope you can get through to somebody Gizmo and get some good support.Just do not give up.

 

Thank you for all your support

I have been trying for 25 years and even when I was younger as I was ending up in hospital due to self harm. Since I have been married I have only overdose once when my wife gave up our baby with out telling me but I don't blame her I blame the NHS at the time.
Since we have been together and my wife has been admitted to hospital I as husband and carer informed NHS staff what my wife can be like. All though NHS don't seen alot wrong and discharged her when she got home she can be violent so the police are called and again re admitted so why does not health professionals listen in our experiences they have not. I have got a issue with professionals who say I can't help but these can. You take advice and they say I can't help but they can so a door is opened then shut in your face. I was with health in mind who can't help they tried to refer to ats no help I am like alot of people in between services and its unfair
Thanks

 

It's so very hard to witness @Gizmo . You never stop worrying about a vulnerable loved one that's for sure.
To make matters worse ( especially throughout Covid ) my younger brother lives alone. He has mastered the art of bluffing his way through my concerned phone calls, saying that he has taken his meds ( and he has absolutely loads to take ,sometimes as many as 8 in one go) , he's done an online shop etc.....then when I pop round a couple of days later I discover the real truth....he hadn't done any such thing and there's no food in the house and yet again he has got into a muddle with all his medication!!
My brother is also physically disabled and has been so since he was 18yrs old. We had carers for him ,calling in twice a day to help shower him , check his meds etc.
A year ago unbeknownst to us he cancelled them all, saying he could manage!!!!!....but hey the mental health team deem him to have 'capacity ' so we can't do a thing.

His frustrations can build up, understandably so, although he would never be violent ,I have learnt to just walk away to keep the situation from escalating. Very hard to do, I come home crying . I promised my mum years before she passed away that no matter what happens ,we, his 3 sisters would always be there for him. However one is poorly herself now and doesn't live nearby and my other sister has mobility issues and is also classed as vulnerable, due to covid restrictions I am the only one in face to face contact with my brother.

I do however receive all medical reports on my brother.......but reading them I'm always left wondering if they are talking about the same person!!!! They don't see the real person that we do behind closed doors and all his smiles and joking banter that he displays publicly...only we ,like you @Gizmo , really know the true life lived by our loved ones.
I had a letter 3 days ago saying he was now discharged from Adult Mental Care, and that they have requested that his own GP annually checks on his Alzheimer's.......they don't even check on him due to his physical disabilities!!!

I know funds are tight and Covid has impacted on all areas of the NHS. I can't help but wonder though that because our loved ones are in a fortunate position of having family support they are placed lower down on the list for receiving additional help.
On paper...yes family are and always will be there, but they should look at the wider picture..are the family members healthy and able to offer such support??
My health has had a bit of a tumble lately so I have had to step back a bit but l still visit him at least once a week, this makes me sad as I know that apart from his lunchtime meals on wheels delivery man I'm the only person he gets to see.
This adds to the pressure because during such visits I have to hide from him the fact that I am secretly checking his state of health and personal care, his medication, his mail, his grocery needs, and household tasks.
Found him on one occasion without light in his lounge because the bulb had gone and he can't stand to change it....normally I visited during the day so I was unaware of it...and he wouldn't think to mention it.

I am in no way meaning to dwell on my situation Gizmo, I just wanted to add strength to my statement of saying to you that I can understand totally your distress on feeling overwhelmed by the whole situation, and the feeling of abandonment in being left to cope.
Do you by chance have a Social Perscriber at your surgery, we do, but I wasn't informed just came across it by chance when desperation led me to search the internet for support. She was chatty but to be honest not that helpful, but you never know ,anything is worth a try.
One thing she did echo, as others have done, was to ensure that I looked after myself and to some extent put my needs first as without me things could get a lot worse for him.


This applies to you too Gizmo, most definitely.

Think of yourself as no.1 priority...so that she can have your continuing love and support.

Love and hugs to you both.xx

 

Thank you for help and advice. I suffer with a lot of stress and anxiety bought on by professionals and my wife as she can play what I would call mind games. Eg when she had carers in after admission to hospital for mental health I informed care company and carers what my wife can be like. when she was having a wash with carers support she got them even to wash between her legs and my mental health went up as its not like she can't do it for her self.

Since being together like a lot of couple we have disagreements and I remember a couple of yrs ago we had a argument and I said I can't keep looking after you as she can do things for her self if she puts her mind to it. And she said why should I not be looked after which for me it sounds like she wanted to go into a care home asc was informed they won't except her as she is only 58
My stress levels goes up due to she don't want to help around the house or the garden like she use to. So I feel like a slave. Unwanted. Lonley. Etc

My wife has a certain desire. Eg after we got married she said that she had been abused but didn't say who untill approx 15 to 20 yrs later and it seemed it was her father who adused her so I tried to get her help she didn't want to know. In our marriage I have been told that she is abusing me as she likes to touch my body but when it happens I can be so destressed and it takes me back to our first baby and midwife issue all the time I can be in tears phoning Dr Surgery. Asc over the issue I went to counciling didn't help. After I was told that my wife was abusing me the next time it happened I picked up the phone and she was arrested but I couldnt press any charges against her as I know she can't help it.

When she was in hospital I saw her 3 times a day every day as I knew that she needed someone that she knew to bring her out and back home.

I have been through a lot in 25 yrs it seems that she has changed as she used to do more positive things before her meds was changed for her desire over me. The meds that she was on had some effect on her behaviour as she was not acting right. Since then she was put back onto her original meds for bio polar but now lacks motavation all though I told Dr Surgery. Asc.

Everything including my health issues impacts on my mental health as well but my focus is on my wife and as they say marriage is for life... I even got a open eye tracker for her though asc lifeline as I want my wife to be more independent and to go out by her self on occasion but she won't. Due to waterworks. And can't get from a to b as she can't drive due to dystonia so she depends on me even when I am not well my self...

Thanks

 

@Gizmo I'm so sorry to read about all the on going issues that you have to battle with every day. I find it beyond my imagination to comprehend the complexities of your wife's condition, she obviously has severe emotional scarring from past events that have impacted drastically on her mental health.

You obviously love her so very dearly and have stood by her through thick and thin, and yes I too believe in the wedding vows we took...but!!!

You could just keep asking and pushing for help and support, but to be totally honest nobody would think bad of you or indeed question your love for her if you decided that enough is enough now and you really can't cope anymore with providing care for her.
In my opinion ,and don't get me wrong I know this would be extremely tough, I think it sounds like she needs professional care, the time you would then get to spend with her would be more meaningful as you wouldn't have the burden of all the tough day to day issues to deal with.

You would both get to spend more quality time together and she would benefit from on going assessments that would undoubtedly be required to be carried out....who knows it could be that you see a significant improvement in your wife's behaviour because of being provided with care and support professionally tailored to meet, match and treat her needs.

You are doing a grand job Gizmo....only you know how to proceed from here. I just think, personally, that it would be nice to be able to reconnect with your wife and get to see her as the lady you fell in love with and not a never-ending problematic challenge that you are having to face on your own daily.

I know I'm looking at it in an idealistic way ...even maybe through rose tinted glasses. I'm out of my depth here ....all I can see it that 1...it's all too much for you alone to cope with, 2 ..your wife needs professional care, support and help...and 3 ..you both deserve to be able to regain the pleasure and enjoyment of each other's company...without the problematic mundane issues blocking the way.

Tough thinking I know , do you carry on as you are now, both probably not being very happy....or is there a better solution, albeit a tough one.

Keep asking .....even begging for help , do whatever it takes to make people stop and listen... before you come to the crunch point of having a break down.

Not much of a help really, as only you know what you both need and how much you both can endure.

Keep posting and sharing with us Gizmo ...it really is good to talk and get the words out. There will always be a friendly ear....well eye !! ready and very willing to be by your side.

Take care my friend.xx

 

Many thanks for your support

I have tried for so many years trying to get support for even my mental health / past history but doors keep getting shut so I think to my self is life really worth it. When I was younger all I wanted was a family but we can't all ways have a fairy tale ending.
Some one said to me once if you love me let me go.... It was very hard to do I was suicidal I had a craving knife in my hand and said I have to do something with my life. I got married we had 2 children both were adopted but it was down to the first child and disbelieved NHS at the time.
Since I got married I have been hit. Kicked. Abused sexually. But I am still here why.? I feel responsible for her all though she treats me the way she does. Yes she has medical problems apart from mental health. I asked her once why don't you help me any more and she said I don't know!
We keep saying that it's not working out anymore but she don't want to separate as she says she won't be able to cope. When I ask her what she would like to do today she all ways says knookie people might think it's funny but I can't have that sort of thing with her due to the first child.
So far I have been to health in mind. Asc. Social services Dr Surgery. At the moment care for the carers are saying possible ptsd as well as reactive depression personality disorder.
All I wanted was a fairy tale what's wrong with that at the moment I am trying to do the housework my back is killing me and doubled over in pain but some one has to try and keep things going and yet all she does is lay down... I cry alot due to no support and chronic pain
Well the only one keeping me going is rocco the dog as he needs looking after as well
That's life?
Thanks