Giving up a child?

[oesdog]

Well DH had to go to hospital today. He is having a lot of issues with the spine.
They are going to try to inject stuff into the neck and spine in 4 weeks time. I guess they have to monitor his heart. They had said they were not going to do that due to the heart condition. I am wondering about that? He had to have injections in both elbows before we went away. He has also had injections into both his hands too. But the spine is different. I am not sure what they will inject into that as they said they couldn;t do it before? Also DH has had issues with the heart again recently sore tightness of the chest and clammy sweats again. All very concerning.
Anyhow they have said that after the injections the next step will be surgery on c4 and c5 - Of course that means DH will not be in any fit state to be caring for Danny. So I am going to have to fight for some kind of help/support service or perminent care for Dan if we go down that route. Thing is I am not able to care for both of them. IF Dh is going to be that sick and need that level of round the clock care after surgery then I am not going to be able for them both. Even their rules of claiming careres allowence don;t let me have more than one care allowence ( Because they believe it is not possible to "care" adiquately for two disabled folk at the same time hence me having to chose which one of my children I "cared for"! ) If that is what they believe and thus will only pay out one set of care allowence by their own deffinaition I am unable to "care for both of these people at the same time and so they will have to do something to help. They will have to stop dropping all the care responsibility at my feet and organise proper outside of the home care. It is going to be a long road ahead and I am hoping that - actually it sounds bad but I am and so is my DD hoping that DH will have the spinal surgery. The injections of pain killers are just masking the problem but surgery may fix it to an extent that he gets some quality of life back.

Anyhow I am exhausted so am for bed.

Oes

 

[warmheart]

Oh dear OES, so much on your plate right now. May those injections help your DH to feel much better.

Is acupuncture a possibility for DH? If insurance will not pay for it, there is something called "community acupuncture." This is very, very affordable. Three or four people in a room sit in comfortable recliners as the acupuncturist attends to each during the hour. To find community acupuncture in your area, it takes some Googling.

I am sending good thoughts for you and your DH and your son right now.

PS-- Another visit with DH's heart specialist might be helpful for you right now. I know you have so many things going on, so many appointments to manage already-- but this one regarding his heart can either give you better information, or help reassure you regarding his condition. In any case, I am sending my good thoughts your way!

 

[oesdog]

Oh dear OES, so much on your plate right now. May those injections help your DH to feel much better.

Is acupuncture a possibility for DH? If insurance will not pay for it, there is something called "community acupuncture." This is very, very affordable. Three or four people in a room sit in comfortable recliners as the acupuncturist attends to each during the hour. To find community acupuncture in your area, it takes some Googling.

I am sending good thoughts for you and your DH and your son right now.

PS-- Another visit with DH's heart specialist might be helpful for you right now. I know you have so many things going on, so many appointments to manage already-- but this one regarding his heart can either give you better information, or help reassure you regarding his condition. In any case, I am sending my good thoughts your way!

Thanks for this mail
No accupuncture wont help. The spine has crush injuries (alot of this is from lifting danny) The vertabra are crumbling and collapsing into eachother. This is what is causing the weakness down one side and the problems with falls and dropping things for DH. I am not sure what exactly they will do maybe put in metal supports for the spine????? I will need to get to talk with the specialist. Also We don;t have an insurance sistem in the UK it is all done through the NHS. You don;t get to pick a specialist. You just get sent. We have a different sistem here than the USA. As for the heart yes he will need to go back and have that sorted out again. There is an issue with it again which is upsetting for us all. His BP is through the roof again and he has had nose bleeds and headaches and hot sweats and lack of colour when he goes pale and grey. He also gets very tired qickely. All of this points back to a heart issues again. Of course he has had the tight chest pains and needs ot take GTN a lot more. We will see what is said in the next while. I think his meds need tweeked again. Anyhow I have to go as guests here for Sunday dinner!

Oes

 

[Alibabe]

Wow, I have just read this entire thread and just want to send you

and good wishes that all gets sorted out for you soon. I cannot comment on the difficulties of raising disabled children or looking after a spouse who is ill but I do sympathise with you about the NHS and all I can say is, keep pushing for help and don't let the NHS push you around and let you down.

Love and prayers coming your way.

 

[silkiemomma9]

Took me a long while to read the thread. I wasn't sure if I should comment, but I have to. I want to offer peace & hope for you and your family. May you all be safe, healthy & content soon

 

[Labmum2]

I couldn't read this whole thread, but certainly, giving up a child isn't easy, but sometimes, it's the wisest choice. Sending prayers for all of those who may be facing a heart-breaking decision such as this.

 

[diamond3girl]

Im sorry for what you're going through, I'm partially paralyze down my left side after 5 spinal surgeries. the first 1 worked and I was fine for 2 years, then a second car accident change that and I needed several more surgeries for different reasons but in the fourth surgery I woke up with the left leg completely paralyzed and screaming in pain. the pain hasn't stopped in 5 years and I have to have my meds tweeked regularly even though I don't take very many as I'd rather be alert and in pain than off my head.. Now, getting to the point!! DH may deteriorate without your full time care & let's face it you will have your work cut out for you just assisting him, the heart is such a delicate organ u really need to look after that. You wouldn't be giving up your child just getting help if you needed to place him in care. as long as you can visit regularly to make sure the care is top notch. you need to look after yourself as well so don't feel bad just make the decision that you need to as you are just as important as your family members that are suffering. My heart goes out to u. No guilt just do whats best for all of you

 

[diamond3girl]

By the wayI have had a stalif and screws put in and its made me stronger

 

[oesdog]

Thanks for the mails - You ar right of course. I certainly cannot cope with looking after everyone fulltime. I am struggling myself to get about as I am in constant pain too with Fibromyalga (soft tissue arthritus - brought on by stress! ) I know what it is like to have someone paralized down one side. My mum had Polio at the age of 16yrs it left her that way. So I have seen how frustrating that can be. We just got a chair in for DH from the OT department to help him get up and down. Cool - accept the first one they delivered was filthy with chunks taken off the bottom by what looked like a dog? So much for the NHS here trying to stop the spred of disease and infection????? I naturally told them where to put their chair and told them it was an insult. So anyhow got another today a better one that is wipe down but again you could see where someone had sat in it and their head had made a mark on the back.So I went and got disinfectant and sprayed the whole thing down and cleaned it before DH used it - gets me mad the way they treat the disabled. Like I want MRSA and Cdif brought to my door. The message is clear - "We don't care if your disabled get sick and die because then we wont have to pay for their care needs!" - Thanks PMinister! It was the same when the rollator arrived - the first one they brought - even though they swore it was clean had an old ladies tights and gloves in the pouch! Yeap real clean that was? So it got sent back and we got another. Thing is if those are not clean it makes you wonder about other things provided like Bath and toilet aids? ARE THEY ACTUALLY CLEAN??????? Steralised as they should be?????? Thing is this sort of equipment is primerily used for the sick, elderly, disabled and dieing - they are a very high disease carrying group and so these things should be steralized. Over in England they are only used by one client and then dumped. Here they are passed around. I don;t mind a used item because I know these things are specialised and very costly however I do think it isn;t much to ask to have the properly cleaned!

Oes - more grumping - I am turning into a grumpy old bag! All I need now is a cat ( oh darn I have one!)

 

[Cochin378]

Oh man I am sorry you are going through this. I have tried reading this whole thread. As a "disabled" person myself I feel I might have some interesting commentary to add. When I was younger no one ever thought that my life would amount to much of anything. They thought that I was cognitively impaired and that I was going to be in a wheel chair for the rest of my life. They were wrong. Currently, I can walk, talk, drive a car, I am applying to colleges , in other words I can function at the level of a normal adult. You never would have guessed that if you met me when I was younger. Speaking for myself as well as working with a varieties of disabled adults and children , most of the time we can understand a lot more than you think we can. We just have difficulty communicating that with you. It is like being locked somewhere and not being able to get out. It causes both sides immense frustration and sometimes, especially among younger people, it causes us to lash out.
It took me longer to learn how to control my disability enough that I could start functioning normally. It was a slow, painstaking process, but once I caught on I made rapid improvements. I have seen other people do the same thing. Sometimes we surprise you. I am so sorry sometimes life gives us all more than we can handle. I am glad you are considering all your options.

Another common misconception among people is that you have to feel sorry for someone with a disability. The fact is that most people I have met don't want anyone to feel sorry for them. They are just trying to live there lives like everyone else. Treat them exactly like you would want to be treated.
I hope this provides some helpful insight for everyone on or looking on this thread.

I hope things get better for you in the future. I commend you for doing such a great job with everything on your plate.